Glick, N.R.; Fischer, M.H.; Heisey, D.M.; Leverson, G.E.; Mann, D.C.
Fractures are more prevalent among people with severe and profound developmental disabilities than in the general population. In order to characterize the tendency of these people to fracture, and to identify features that may guide the development of preventive strategies, we analyzed fracture epidemiology in people with severe and profound developmental disabilities who lived in a stable environment. Data from a 23-year longitudinal cohort registry of 1434 people with severe and profound developmental disabilities were analyzed to determine the effects of age, gender, mobility, bone fractured, month of fracture, and fracture history upon fracture rates. Eighty-five percent of all fractures involved the extremities. The overall fracture rate increased as mobility increased. In contrast, femoral shaft fracture risk was substantially higher in the least mobile [relative risk (RR), 10.36; 95% confidence interval (CI), 3.29-32.66] compared with the most mobile group. Although the overall fracture rate was not associated with age, the femoral shaft fractures decreased but hand/foot fractures increased with age. Overall fracture risk declined in August and September (RR, 0.70; 95% CI, 0.55-0.89), being especially prominent for tibial/fibular fractures (RR, 0.31; 95% CI, 0.13-0.70). Gender was not a factor in fracture risk. Two primary fracture mechanisms are apparent: one, largely associated with lack of weight-bearing in people with the least mobility, is exemplified by femoral fractures during non-traumatic events as simple as diapering or transfers; the other, probably due to movement- or fall-related trauma, is exemplified by hand/foot fractures in people who ambulate. The fracture experience of people with severe and profound developmental disabilities is unique and, because it differs qualitatively from postmenopausal osteoporosis, may require population-specific methods for assessing risk, for improving bone integrity, and for reduction of falls and accidents
Jackson, Jeffrey B.; Roper, Susanne Olsen
Utilizing grounded theory qualitative research methods, a model was developed for describing parental adaptation after voluntary placement of a child with severe or profound developmental disabilities in out-of-home care. Interviews of parents from 20 families were analyzed. Parents' cognitive appraisals of placement outcomes were classified…
Full Text Available People with developmental disabilities can experience any psychological abnormalitiy and psychiatric illness as do people without developmental disabilities. Due to different diagnostic criteria, assessment procedures and instruments, we lack definite prevalence rates for people with developmental disabilities, also suffering from mental health problems, eventhough most studies place the rate at 20 to 40%. One of the possible treatment alternatives for augmenting psychological well-being is psychotherapy, but is extremely rarely used for people with severe and profound disabilities, where speech cannot be the main therapeutic medium. So, those that are included in the psychotherapuetic process are predominantly clients with mild developmental disabilities, and they are mostly in cognitive-behavioral therapy. Recently, two models of (psychotherapy for persons with severe and profound developmental disabilities were developed: developmental-dynamic relationship therapy and attachment-based behaviour therapy for children. Conceptually, they both originate form developmental psychoanalytic theories.
Talman, Lena; Gustafsson, Christine; Stier, Jonas; Wilder, Jenny
This study investigated what areas of International Classification of Functioning, Disability and Health were documented in implementation plans for adults with profound intellectual disability or profound intellectual and multiple disabilities with focus on participation. A document analysis of 17 implementation plans was performed and International Classification of Functioning, Disability and Health was used as an analytic tool. One hundred and sixty-three different codes were identified, especially in the components Activities and participation and Environmental factors. Participation was most frequently coded in the chapters Community, social and civic life and Self-care. Overall, the results showed that focus in the implementation plans concerned Self-care and Community, social and civic life. The other life areas in Activities and participation were seldom, or not at all, documented. A deeper focus on participation in the implementation plans and all life areas in the component Activities and participation is needed. It is important that the documentation clearly shows what the adult wants, wishes, and likes in everyday life. It is also important to ensure that the job description for staff contains both life areas and individual preferences so that staff have the possibility to work to fulfill social and individual participation for the target group. Implications for rehabilitation There is a need for functioning working models to increase participation significantly for adults with profound intellectual disability or profound intellectual and multiple disabilities. For these adults, participation is achieved through the assistance of others and support and services carried out must be documented in an implementation plan. The International Classification of Functioning, Disability and Health can be used to support staff and ensure that information about the most important factors in an individual's functioning in their environment is not omitted in
In this thesis four empirical studies dealt with children with profound multiple disabilities and their parents with regard to: (a) how parents perceived interaction with their children (b) how observed child/parent interaction was linked to behavior style of the children as perceived by the parents (c) how parents of children with profound multiple disabilities perceived child/parent interaction and behavior style of their children in comparison to parents to children without disabilities ma...
... play, learn, speak, behave, and move (for example, crawling and walking). Children develop at their own pace, ... person’s lifetime. Most developmental disabilities begin before a baby is born, but some can happen after birth ...
Nijs, Sara; Maes, Bea
Social interactions may positively influence developmental and quality of life outcomes. Research in persons with profound intellectual and multiple disabilities (PIMD) mostly investigated interactions with caregivers. This literature review focuses on peer interactions of persons with PIMD. A computerized literature search of three databases was…
One challenge to the concept of human dignity is that it is a rootless notion invoked simply to mask inequalities that inevitably exist between human beings. This privileging of humans is speciesist and its weak point is the profoundly disabled human being. This article argues that far from being a weak point, the profoundly disabled person is a source of strength and witness to the intrinsic dignity that all human beings have by virtue of being human. The disabled represent the reality of human existence that is both strong and fragile. Although human dignity can be understood philosophically its depth is rooted in Christian theological insights. The profoundly disabled occupy a privileged position and share in a theology of mission since they testify to the interdependence of every human being and human dependence on God to a myopic world that only values strength, autonomy and independence.
Schalen, Gertruud Henrike; van der Putten, Annette; Maes, Bea; Vlaskamp, Carla
Aim: Early motor stimulation may be valuable for children with profound intellectual and multiple disabilities (PIMD), however limited knowledge of their typical motor developmental trajectory may be currently restraining the efficacy and specificity of this intervention. Research on young children
Ivancic, Martin T.; And Others
The happiness indices in a Fun Time activity were systematically increased for three of four people with profound multiple disabilities by providing their preferred stimuli. The fourth showed decreased unhappiness. However, three people with profound disabilities and minimal movement failed to show any indices of happiness or unhappiness.…
Tam, Gee May; Phillips, Katrina J.; Mudford, Oliver C.
We replicated and extended previous research on microswitch facilitated choice making by individuals with profound multiple disabilities. Following an assessment of stimulus preferences, we taught 6 adults with profound multiple disabilities to emit 2 different responses to activate highly preferred stimuli. All participants learnt to activate…
Spiel, G; Brunner, E; Allmayer, B; Pletz, A
Speech disabilities (articulation deficits) and language disorders--expressive (vocabulary) receptive (language comprehension) are not uncommon in children. An overview of these along with a global description of the impairment of communication as well as clinical characteristics of language developmental disorders are presented in this article. The diagnostic tables, which are applied in the European and Anglo-American speech areas, ICD-10 and DSM-IV, have been explained and compared. Because of their strengths and weaknesses an alternative classification of language and speech developmental disorders is proposed, which allows a differentiation between expressive and receptive language capabilities with regard to the semantic and the morphological/syntax domains. Prevalence and comorbidity rates, psychosocial influences, biological factors and the biological social interaction have been discussed. The necessity of the use of standardized examinations is emphasised. General logopaedic treatment paradigms, specific therapy concepts and an overview of prognosis have been described.
Everaarts, Sanne; de Boer, Anke; van der Putten, Annette; Minnaert, Alexander
Aim: Although children with disabilities have the right to be included into the school system, children with Profound Intellectual and Multiple Disabilities (PIMD) are often not included. The aim of this study is to gather knowledge about inclusive education for children with PIMD by identifying
Full Text Available Developmental disabilities consist of conditions that delay or impair the physical, cognitive, and/or psychological development of children. If not intervened at the earliest, these disabilities will cause significant negative impact on multiple domains of functioning such as learning, language, self-care and capacity for independent living. Common developmental disabilities include autism spectrum disorders, intellectual disabilities, developmental delay and cerebral palsy. About one fourth of young children in developing countries are at risk for or have developmental delay or disabilities. Inadequate stimulation has significant negative impact on physical, socioemotional and cognitive development of children. Hence early scientific intervention programs are necessary in the management of children at risk for developmental delay.
Darling, Joseph A; Circo, Deborah K
This quantitative study assessed whether presentation of preferred items and activities during multiple periods of the day (and over multiple days) increased indices of happiness (over time/sustained) in individuals with PMD. A multiple baseline design across participants was utilized to measure changes in indices of happiness of the participants. Participants were recruited from an adult day activity program specializing in providing assistance to individuals with disabilities. For Mary, baseline indices of happiness were 26.67% of intervals, increasing 6.76% during intervention to 33.43%. For Caleb, baseline indices of happiness were 20.84% of intervals, increasing 6.34% during intervention to 27.18%. For Mark, baseline indices of happiness were 40.00% of intervals, increasing 12.75% during intervention to 52.75%. Overall interobserver agreement was 82.8%, with interobserver agreement observations occurring during 63.04% of the observations. The results of the investigation demonstrated that presenting preferred items and activities increased the indices of happiness compared to baseline rates of indices of happiness. Results may have been more robust if the participants were assessed for overall responsiveness patterns prior to the initiation of measurement of indices of happiness. Copyright © 2015 Elsevier Ltd. All rights reserved.
Griffiths, Colin; Smith, Martine
People with severe and profound intellectual disability typically demonstrate a limited ability to communicate effectively. Most of their communications are non-verbal, often idiosyncratic and ambiguous. This article aims to identify the process that regulates communications of this group of people with others and to describe the methodological approach that was used to achieve this. In this qualitative study, two dyads consisting of a person with severe or profound intellectual and multiple disability and a teacher or carer were filmed as they engaged in school-based activities. Two 1-hour videotapes were transcribed and analysed using grounded theory. Attuning was identified within the theory proposed here as a central process that calibrates and regulates communication. Attuning is conceptualized as a bidirectional, dyadic communication process. Understanding this process may support more effective communication between people with severe or profound intellectual and multiple disability and their interaction partners. © 2015 John Wiley & Sons Ltd.
Atkin, Keith; Lorch, Marjorie Perlman
Profound and multiple learning disabilities (PMLD) are a complex range of disabilities that affect the general health and well-being of the individual and their capacity to interact and learn. We developed a new methodology to capture the non-symbolic signalling behaviours of children with PMLD within the context of a face-to-face interaction with a caregiver to provide analysis at a micro-level of descriptive detail incorporating the use of the ELAN digital video software. The signalling behaviours of participants in a natural, everyday interaction can be better understood with the use of this innovation in methodology, which is predicated on the ecology of communication. Recognition of the developmental ability of the participants is an integral factor within that ecology. The method presented establishes an advanced account of the modalities through which a child affected by PMLD is able to communicate.
Guy, Barbara; And Others
This study examined whether teacher-implemented classroom measurement procedures of short duration are as reliable as methods used in research studies to determine behavior state (e.g., awake active, awake inactive, asleep, drowsed) of six students with profound mental disabilities. Results indicated that more frequent but briefer measurements…
van den Bosch, Kirsten A.; Andringa, Tjeerd C.; Baskent, Deniz; Vlaskamp, Carla
Attention to the auditory environment of people with profound intellectual and multiple disabilities (PIMD) is limited, both in research and practice. As there is a dynamic interplay between the quality of the auditory environment and well-being, a study was undertaken to test the validity of the
Petry, K.; Maes, B.; Vlaskamp, C.
Background: In a recent study, we constructed an item pool that contains items on the quality of life (QOL) and related aspects of support of people with profound multiple disabilities (PMD). In the present study, a panel of experts assessed the content and the structure of this item pool in order
Aherne, Cian; Coughlan, Barry
Background: Aquatics is an under-researched but possibly appropriate form of activity for people with severe to profound intellectual disabilities (SPIDs). Aim: The current pilot study investigates the suitability of an aquatics programme for service users with SPIDs. Method: Four service users with SPID completed an 8-12-session aquatics…
Munde, V.S.; Vlaskamp, C.; Ruijssenaars, A.J.J.M.; Nakken, H.
In the support of individuals with profound intellectual and multiple disabilities (PIMD), assessing the level of alertness is a recurring issue for parents and other direct support persons. Although observations show clear advantages above and beyond other assessment methods, there are problems
Young, Hannah; Garrard, Brenda
Supporting bereaved people with profound learning disabilities still remains an under-researched area. Moreover, the barriers of communication and disenfranchised grief mean that they often do not receive the support they require, leading to emotional and behavioural difficulties. This article describes research using a case study design, which…
van den Broek, E.G.C.; Janssen, C.G.C.; van Ramshorst, T.; Deen, L.
Background: The prevalence of visual impairments in people with severe and profound multiple disabilities (SPMD) is the subject of considerable debate and is difficult to assess. Methods: In a typical Dutch care organization, all clients with SPMD (n = 76) participated in the study and specific
Waninge, Aly; van der Putten, Annette A. J.; Stewart, Roy E.; Steenbergen, Bert; van Wijck, Ruud; van der Schans, Cees P.
Because physical fitness and health are related to physical activity, it is important to gain an insight into the physical activity levels of persons with profound intellectual and multiple disabilities (PIMD). The purpose of this study was to examine heart rate patterns to measure the activity
Ine, Hostyn; Heleen, Neerinckx; Bea, Maes
Few studies have examined joint attention in interactions with persons with profound intellectual and multiple disabilities (PIMD), despite its important role in high-quality interaction. The purpose of this study is to describe the attention-directing behaviours of persons with PIMD and their direct support staff and the attention episodes…
Hostyn, Ine; Maes, Bea
Background: High quality interactions are of crucial importance for quality of life of persons with profound intellectual and multiple disabilities (PIMD). This literature review describes and synthesises studies addressing the interaction between persons with PIMD and their partners. Method: A computerised literature search using defined…
Griffiths, Colin; Smith, Martine
Background: People with severe and profound intellectual disability typically demonstrate a limited ability to communicate effectively. Most of their communications are non-verbal, often idiosyncratic and ambiguous. This article aims to identify the process that regulates communications of this group of people with others and to describe the…
Bossink, Leontien; van der Putten, Annette; Vlaskamp, Carla
Introduction: People with intellectual disabilities (ID) undertake extremely low levels of physical activity, which is even more true in people with profound intellectual and multiple disabilities (PIMD). Physical activity approaches, particularly for people with PIMD, are more likely to be
van den Bosch, Kirsten A.; Vlaskamp, Carla; Andringa, Tjeerd C.; Post, Wendy J.; Ruijssenaars, Wied A.J.J.M.
Background: People with profound intellectual disabilities experience a high prevalence of visual disabilities, making them more dependent on sound. However, research addressing the influence of the auditory environment is scarce. Method: Observations of the auditory environments (soundscapes) and
The co-occurrence of epilepsy in people with intellectual disabilities (ID) and other developmental disabilities (DD) has received attention because it has a significant negative impact on health, well-being, and quality of life. The current research investigating the frequency and form of epilepsy in children with ID and DD is reviewed, with…
Fukushima, Kunihiro; Kawasaki, Akihiro; Nagayasu, Rie; Kunisue, Kazuya; Maeda, Yukihide; Kariya, Shin; Kataoka, Yuko; Nishizaki, Kazunori
Learning disability combined with hearing impairment (LDHI) is a poor prognostic factor for the language development of hearing impaired children after educational intervention. A typical example of a child with LDHI and effective interventions provided by cochlear implants are presented in this report. A case of congenital cytomegaloviral infection that showed dysgraphia as well as profound deafness was reported and an underlying visual processing problem diagnosed in the present case caused the patient's dysgraphia. The dysgraphia could be circumvented by the use of auditory memory fairly established by a cochlear implant.
Abdel-Salam, Ghada M H; Abdel-Hamid, Mohamed S; Saleem, Sahar N; Ahmed, Mahmoud K H; Issa, Mahmoud; Effat, Laila K; Kayed, Hisham F; Zaki, Maha S; Gaber, Khaled R
We describe two sibs with a lethal form of profound congenital microcephaly, intrauterine and postnatal growth retardation, subtle skeletal changes, and poorly developed brain. The sibs had striking absent cranial vault with sloping of the forehead, large beaked nose, relatively large ears, and mandibular micro-retrognathia. Brain magnetic resonance imaging (MRI) revealed extremely simplified gyral pattern, large interhemispheric cyst and agenesis of corpus callosum, abnormally shaped hippocampus, and proportionately affected cerebellum and brainstem. In addition, fundus examination showed foveal hypoplasia with optic nerve atrophy. No abnormalities of the internal organs were found. This profound form of microcephaly was identified at 17 weeks gestation by ultrasound and fetal brain MRI helped in characterizing the developmental brain malformations in the second sib. Molecular analysis excluded mutations in potentially related genes such as RNU4ATAC, SLC25A19, and ASPM. These clinical and imaging findings are unlike that of any recognized severe forms of microcephaly which is believed to be a new microcephalic primordial dwarfism (MPD) with developmental brain malformations with most probably autosomal recessive inheritance based on consanguinity and similarly affected male and female sibs. Copyright © 2012 Wiley Periodicals, Inc.
Cash, Stefan; Shinnick-Page, Andrea
Nurses and other carers of people with learning disabilities must be able to manage choking events and perform basic life support effectively. UK guidelines for assessment of airway obstruction and for resuscitation do not take account of the specific needs of people with profound multiple learning disability. For example, they fail to account for inhibited gag and coughing reflexes, limited body movements or chest deformity. There are no national guidelines to assist in clinical decisions and training for nurses and carers. Basic life support training for students of learning disability nursing at Birmingham City University is supplemented to address these issues. The authors ask whether such training should be provided for all nurses including those caring for children and young people. They also invite comment and discussion on questions related to chest compression and training in basic life support for a person in a seated position.
Kamstra, A.; van der Putten, A.A.J.; Post, W.J.; Vlaskamp, C.
BACKGROUND: People with profound intellectual and multiple disabilities (PIMD) have limited informal social contacts. Research to determine the factors which can positively influence establishing sound informal social contacts is required. MATERIALS AND METHODS: Regression analysis for 200 people
“I love my sister, but sometimes I don’t”. This is one of the statements made in the study focused on the experiences of family members of people with (profound) intellectual (and multiple) disabilities (both of individuals living in a residential facility as persons living at home). In recent years, there has been greater recognition of the important position of parents and siblings of people with (profound) intellectual (and multiple) disabilities and the importance of the wellbeing of all ...
Schoch, Kelly; Meng, Linyan; Szelinger, Szabolcs; Bearden, David R; Stray-Pedersen, Asbjorg; Busk, Oyvind L; Stong, Nicholas; Liston, Eriskay; Cohn, Ronald D; Scaglia, Fernando; Rosenfeld, Jill A; Tarpinian, Jennifer; Skraban, Cara M; Deardorff, Matthew A; Friedman, Jeremy N; Akdemir, Zeynep Coban; Walley, Nicole; Mikati, Mohamad A; Kranz, Peter G; Jasien, Joan; McConkie-Rosell, Allyn; McDonald, Marie; Wechsler, Stephanie Burns; Freemark, Michael; Kansagra, Sujay; Freedman, Sharon; Bali, Deeksha; Millan, Francisca; Bale, Sherri; Nelson, Stanley F; Lee, Hane; Dorrani, Naghmeh; Goldstein, David B; Xiao, Rui; Yang, Yaping; Posey, Jennifer E; Martinez-Agosto, Julian A; Lupski, James R; Wangler, Michael F; Shashi, Vandana
Whole-exome sequencing (WES) has increasingly enabled new pathogenic gene variant identification for undiagnosed neurodevelopmental disorders and provided insights into both gene function and disease biology. Here, we describe seven children with a neurodevelopmental disorder characterized by microcephaly, profound developmental delays and/or intellectual disability, cataracts, severe epilepsy including infantile spasms, irritability, failure to thrive, and stereotypic hand movements. Brain imaging in these individuals reveals delay in myelination and cerebral atrophy. We observe an identical recurrent de novo heterozygous c.892C>T (p.Arg298Trp) variant in the nucleus accumbens associated 1 (NACC1) gene in seven affected individuals. One of the seven individuals is mosaic for this variant. NACC1 encodes a transcriptional repressor implicated in gene expression and has not previously been associated with germline disorders. The probability of finding the same missense NACC1 variant by chance in 7 out of 17,228 individuals who underwent WES for diagnoses of neurodevelopmental phenotypes is extremely small and achieves genome-wide significance (p = 1.25 × 10 -14 ). Selective constraint against missense variants in NACC1 makes this excess of an identical missense variant in all seven individuals more remarkable. Our findings are consistent with a germline recurrent mutational hotspot associated with an allele-specific neurodevelopmental phenotype in NACC1. Copyright © 2017 American Society of Human Genetics. All rights reserved.
Gauthier-Boudreault, Camille; Couture, Mélanie; Gallagher, Frances
Background: At age 21, access to specialised services for youth with profound intellectual disability is reduced. Few studies have focused on parents' views concerning potential solutions to ease the transition to adulthood, and most existing solutions target young adults with less severe intellectual disability. The aim of this study is to…
Nilsson, Lisbeth; Eklund, Mona; Nyberg, Per; Thulesius, Hans
The Driving to Learn project explored ways to help people with profound cognitive disabilities practice operating a joystick-operated powered wheelchair. The project used a grounded theory approach with constant comparative analysis and was carried out over 12 yr. The participants were 45 children and adults with profound cognitive disabilities. Reference groups included 17 typically developing infants and 64 participants with lesser degrees of cognitive disability. The data sources included video recordings, field notes, open interviews, and a rich mixture of literature. The findings that emerged yielded strategies for facilitating achievements, an 8-phase learning process, an assessment tool, and a grounded theory of deplateauing explaining the properties necessary for participants to exceed expected limitations and plateaus. Eight participants with profound cognitive disabilities reached goal-directed driving or higher. Participants were empowered by attaining increased control over tool use, improving their autonomy and quality of life.
Ten Brug, A; Van der Putten, A A J; Penne, A; Maes, B; Vlaskamp, C
Multi-sensory storytelling (MSST) was developed to include persons with profound intellectual and multiple disabilities in storytelling culture. In order to increase the listeners' attention, MSST stories are individualised and use multiple sensory stimuli to support the verbal text. In order to determine the value of MSST, this study compared listeners' attention under two conditions: (1) being read MSST books and (2) being read regular stories. A non-randomised control study was executed in which the intervention group read MSST books (n = 45) and a comparison group (n = 31) read regular books. Books were read 10 times during a 5-week period. The 1st, 5th and 10th storytelling sessions were recorded on video in both groups, and the percentage of attention directed to the book and/or stimuli and to the storyteller was scored by a trained and independent rater. Two repeated measure analyses (with the storytelling condition as a between-subject factor and the three measurements as factor) were performed to determine the difference between the groups in terms of attention directed to the book/stimuli (first analysis) and storyteller (second analysis). A further analysis established whether the level of attention changed between the reading sessions and whether there was an interaction effect between the repetition of the book and the storytelling condition. The attention directed to the book and/or the stimuli was significantly higher in the MSST group than in the comparison group. No significant difference between the two groups was found in the attention directed to the storyteller. For MSST stories, most attention was observed during the fifth reading session, while for regular stories, the fifth session gained least attentiveness from the listener. The persons with profound intellectual and multiple disabilities paid more attention to the book and/or stimuli in the MSST condition compared with the regular story telling group. Being more attentive towards
Hoevenaars-van den Boom, M A A; Antonissen, A C F M; Knoors, H; Vervloed, M P J
In persons with deafblindness, it is hard to distinguish autism spectrum disorders from several deafblind specific behaviours caused by the dual sensory impairments, especially when these persons are also intellectually disabled. As a result, there is an over-diagnosis of autism in persons who are deafblind leading to unsuitable interventions. Autism as specified by the DSM-IV was studied in 10 persons with congenital deafblindness with profound intellectual disabilities. Behaviours of people with deafblindness and autism (n = 5) and of people with deafblindness without autism (n = 5) were observed in a semi-standardised assessment. All people with deafblindness showed impairments in social interaction, communication and language. In contrast to persons without autism, people with deafblindness and autism showed significantly more impairments in reciprocity of social interaction, quality of initiatives to contact and the use of adequate communicative signals and functions. No differences between the groups were found for quantity and persistence of stereotyped behaviour, quality of play and exploration and adequate problem-solving strategies. This study indicates that there are some possibilities to differentiate autism from behaviours specific for deafblindness. It also confirms the large overlap in overt behaviours between people with deafblindness and persons with autism.
Jansen, S L G; van der Putten, A A J; Vlaskamp, C
The importance of a partnership between parents and professionals in the support of children with disabilities is widely acknowledged and is one of the key elements of 'family-centred care'. To what extent family-centred principles are also applied to the support of persons with profound intellectual and multiple disabilities (PIMD) is not yet known. The purpose of this exploratory study was to examine what parents with a child with PIMD find important in the support of their child. In addition, we examined which child or parent characteristics influence these parental opinions. In total, 100 parents completed an adapted version of the Measure of Processes of Care. Mean unweighted and weighted scale scores were computed. Non-parametric tests were used to examine differences in ratings due to child (gender, age, type and number of additional disabilities, type of services used and duration of service use) and parent characteristics (gender, involvement with support and educational level). Parents rated situations related to 'Respectful and Supportive Care' and 'Enabling and Partnership' with averages of 7.07 and 6.87 respectively on a scale from 1 to 10. They were generally satisfied with the services provided, expressed in a mean score of 6.88 overall. The age of the child significantly affected the scores for 'Providing Specific Information about the Child'. Parents of children in the '6-12 years' age group gave significantly higher scores on this scale than did parents of children in the '≥17 years' age group (U = 288, r = -0.34). This study shows that parents with children with PIMD find family-centred principles in the professional support of their children important. Although the majority of parents are satisfied with the support provided for their children, a substantial minority of the parents indicated that they did not receive the support they find important. © 2012 Blackwell Publishing Ltd.
Walton, Katherine M.; Ingersoll, Brooke R.
Social skills are important treatment targets for individuals with autism spectrum disorders (ASD) across the lifespan. However, few treatments are available for adolescents and adults with ASD who also have severe to profound intellectual disability (S/PID). Several social skill interventions have been described that may improve social skills in…
Vlaskamp, C.; Cuppen-Fonteine, H.
Background This study describes preliminary stages of developing a checklist to enable practitioners to determine the behavioural responses of children with profound intellectual and multiple disabilities to sensory stimuli. Reliability of currently used checklists is low, with a focus on the
Bossink, Leontien; van der Putten, Annette; Vlaskamp, Carla
Aim: The total study aims at generating knowledge about the best way to motor activate persons with profound intellectual and multiple disabilities (PIMD) in residential facilities. The purpose of the current poster presentation is to present the results of the first step executed in this project
van der Heide, D. C.; van der Putten, A. A. J.; van den Berg, P. B.; Taxis, K.; Vlaskamp, C.
Persons with profound intellectual and multiple disabilities (PIMD) suffer from a wide range of health problems and use a wide range of different drugs. This study investigated for frequently used medication whether there was a health problem documented in the medical notes for the drug prescribed.
Petry, K; Maes, B; Vlaskamp, C
Background This study considered the general validity of the basic domains of quality of life that appear in theoretical models, in relation to people with profound multiple disabilities. The authors examined how parents and direct support staff operationalized these basic domains for people with
Lancioni, G.E.; Bellini, D.; Oliva, D.; Singh, N.N.; O'Reilly, M.F.; Sigafoos, J.; Lang, R.B.; Didden, H.C.M.
A camera-based microswitch technology was recently used to successfully monitor small eyelid and mouth responses of two adults with profound multiple disabilities (Lancioni et al., Res Dev Disab 31:1509-1514, 2010a). This technology, in contrast with the traditional optic microswitches used for
Kamstra, A.; van der Putten, A. A. J.; Post, W. J.; Vlaskamp, C.
Background: People with profound intellectual and multiple disabilities (PIMD) have limited informal social contacts. Research to determine the factors which can positively influence establishing sound informal social contacts is required. Materials and Methods: Regression analysis for 200 people with PIMD was used to analyse how age,…
“I love my sister, but sometimes I don’t”. This is one of the statements made in the study focused on the experiences of family members of people with (profound) intellectual (and multiple) disabilities (both of individuals living in a residential facility as persons living at home). In recent
Matson, Johnny L.; Terlonge, Cindy; Gonzalez, Melissa L.; Rivet, Tessa
The purpose of this study was to explore the interrelationship of social and adaptive skills in adults with bipolar disorder and severe or profound intellectual disability. A bipolar group (N=14), a severe psychopathology group without bipolar disorder (N=14), and a control group with no DSM-IV Axis I diagnosis (N=14) were compared on the…
Vlaskamp, Carla; Nakken, Han
For several reasons, people with profound and multiple disabilities may be offered a variety of therapeutic interventions. Thus far, researchers have shown a limited interest in providing an empirical base for these interventions. Research is needed on the theoretical rationale (if any), the
Axelsson, Anna Karin
Background: Children with profound intellectual and multiple disabilities need support to function in an optimal way. However, there is a limited knowledge about the role of external personal assistants working in the children's home. Materials and Methods: A mixed method study was performed including qualitative data from interviews with 11…
Munde, V. S.; Vlaskamp, C.; Maes, B.; Ruijssenaars, A. J. J. M.
BackgroundWhile optimally activities are provided at those moments when the individual with profound intellectual and multiple disabilities (PIMD) is focused on the environment' or alert', detailed information about the impact that the design and timing of the activity has on alertness is lacking.
Maes, Bea; Lambrechts, Greet; Hostyn, Ine; Petry, Katja
Background: This study provides an overview of empirical research on the effectiveness of quality-enhancing interventions for people with profound intellectual and multiple disabilities (PIMD). Method: Through computerised searches of the PsycINFO and ERIC databases, and using several search criteria specifically relating to the target group and…
Poppes, P.; van der Putten, A.A.J.; ten Brug, A.; Vlaskamp, C.
A study has shown that staff do not generally perceive challenging behaviour in people with profound intellectual and multiple disabilities (PIMD) as being of serious consequence. In this study we aimed to gain a better understanding of the causal explanations that direct care and support staff give
Hattier, Megan A.; Matson, Johnny L.; Sipes, Megan; Turygin, Nicole
Research that focuses on detecting and assessing the presence of communication impairments in children with developmental disabilities exists. However, more research is needed which compares these deficits across individuals with various developmental disabilities. This information could inform the assessment process and treatment programs.…
Arnold, Catherine K.; Heller, Tamar; Kramer, John
This qualitative study examines the support needs of adult siblings of people with developmental disabilities. A survey completed by 139 siblings of people with developmental disabilities captured the needs of adult siblings through 2 open-ended questions. A grounded theory approach was used, and the sibling responses anchored the analysis,…
Ferguson, Fred S.; And Others
In 1980, the State University of New York at Stony Brook began a program, integrated into the program of children's dentistry, to train students in care for the developmentally disabled. Management of developmentally disabled patients is provided over three years, and represents an extension of pediatric behavior management. (MSE)
Hostyn, Ine; Ine, Hostyn; Neerinckx, Heleen; Heleen, Neerinckx; Maes, Bea; Bea, Maes
Few studies have examined joint attention in interactions with persons with profound intellectual and multiple disabilities (PIMD), despite its important role in high-quality interaction. The purpose of this study is to describe the attention-directing behaviours of persons with PIMD and their direct support staff and the attention episodes resulting from their interactions, and to understand how these variables relate to each other. Video observations of 17 staff-client dyads were coded using partial interval recording. The results showed considerable variation across individuals and dyads. In general, persons with PIMD directed the attention of staff members infrequently. The staff members frequently directed their clients' attention towards a topic of interest but did not often use the tactile modality. Within the staff-client dyad, there was not much joint attention; however, shared attention episodes occurred frequently. Shared attention and joint attention are strongly correlated. A negative correlation was found between clients not using attention-directing behaviours and staff members using tactile methods to direct the attention, and joint attention episodes. This study presents both directions for future research and practical implications. Copyright © 2010 Elsevier Ltd. All rights reserved.
Dekker, Marielle C.; Nunn, Russell J.; Einfeld, Stewart E.; Tonge, Bruce J.; Koot, Hans M.
Analysis of parent and teacher Developmental Behavior Checklist (DBC) ratings on a combined sample of 1,536 Dutch and Australian children (ages 3-22) with mild to profound intellectual disabilities produced five subscales: Disruptive/Antisocial, Self-Absorbed, Communication Disturbance, Anxiety, and Social Relating. Internal consistency of the…
Luijkx, J; van der Putten, A A J; Vlaskamp, C
Raising children with severe or profound intellectual and multiple disabilities (PIMD) is expected to put extreme pressure on parental time use patterns. The aim of this study was to examine the total time use of mothers and fathers raising children with PIMD and compare it with the time use of parents of typically developing children. Twenty-seven fathers and 30 mothers raising children with PIMD completed a time use diary on a mobile phone or tablet app, as did 66 fathers and 109 mothers of typically developing children. Independent t-tests and Mann-Whitney tests were performed to compare mean time use. There are no differences in the time use of parents of children with PIMD on contracted time (paid work and educational activities) and necessary time (personal care, eating and drinking and sleeping) when compared with parents of typically developing children. There are significant differences between the parents of children with PIMD and the parents of typically developing children in terms of committed time (time for domestic work and the care and supervision of their children) and free time. The mothers of children with PIMD spend significantly less time on domestic work and more time on care and supervision than mothers of typically developing children. This study shows that the parents of children with PIMD have to spend a significant amount of time on care tasks and have on average 1.5 h less free time per day than parents of typically developing children. This is a striking difference, because leisure time can substantially contribute to well-being. Therefore, it is important not only to consider a child with PIMD's support needs but also to identify what parents need to continue their children's daily care and supervision. © 2017 John Wiley & Sons Ltd.
Maenner, Matthew J; Smith, Leann E; Hong, Jinkuk; Makuch, Renee; Greenberg, Jan S; Mailick, Marsha R
Background Activity limitations are an important and useful dimension of disability, but there are few validated measures of activity limitations for adolescents and adults with developmental disabilities. Objective/Hypothesis To describe the development of the Waisman Activities of Daily Living (W-ADL) Scale for adolescents and adults with developmental disabilities, and systematically evaluate its measurement properties according to an established set of criteria. Methods The W-ADL was administered among four longitudinally-studied groups of adolescents and adults with developmental disabilities: 406 with autism; 147 with fragile-X syndrome; 169 with Down syndrome, and 292 with intellectual disability of other or unknown origin. The W-ADL contains 17 activities and each is rated on a 3-point scale (0=“does not do at all”, 1=“does with help”, 2=“independent”), and a standard set of criteria were used to evaluate its measurement properties. Results Across the disability groups, Cronbach’s alphas ranged from 0.88 to 0.94, and a single-factor structure was most parsimonious. The W-ADL was reliable over time, with weighted kappas between 0.92 and 0.93. Criterion and construct validity were supported through substantial associations with the Vineland Screener, need for respite services, caregiving burden, and competitive employment. No floor or ceiling effects were present. There were significant group differences in W-ADL scores by maternally-reported level of intellectual disability (mild, moderate, severe, profound). Conclusions The W-ADL exceeded the recommended threshold for each quality criterion the authors evaluated. This freely-available tool is an efficient measure of activities of daily living for surveys and epidemiological research concerning adolescents and adults with developmental disabilities. PMID:23260606
Holenweg-Gross, C; Newman, C J; Faouzi, M; Poirot-Hodgkinson, I; Bérard, C; Roulet-Perez, E
To estimate the prevalence of undernutrition among children with profound intellectual and multiple disabilities (PIMD) and to explore its influence on quality of life. Seventy-two children with PIMD (47 male; 25 female; age range 2 to 15 years 4 months; mean age 8.6, SD 3.6) underwent an anthropometric assessment, including body weight, triceps skinfold thickness, segmental measures and recumbent length. Undernutrition was determined using tricipital skinfold percentile and z-scores of weight-for-height and height-for-age. The quality of life of each child was evaluated using the QUALIN questionnaire adapted for profoundly disabled children. Twenty-five children (34.7%) were undernourished and seven (9.7%) were obese. Among undernourished children only eight (32 %) were receiving food supplements and two (8%) had a gastrostomy, of which one was still on a refeeding programme. On multivariate analysis, undernutrition was one of the independent predictors of lower quality of life. Undernutrition remains a matter of concern in children with PIMD. There is a need to better train professionals in systematically assessing the nutritional status of profoundly disabled children in order to start nutritional management when necessary. © 2013 John Wiley & Sons Ltd.
Background: It is now expected that projects addressing the lives of people with learning disabilities include people with learning disabilities in the research process. In the past, such research often excluded people with learning disabilities, favouring the opinions of family members, carers and professionals. The inclusion of the voices of…
Andersen, Richard D.
The nature of chronic infections in developmentally disabled children is reviewed, along with appropriate management strategies for care providers and implications for other children. Discussed are herpes simplex virus, cytomegalovirus, hepatitis B virus, and human immunodeficiency virus. (Author/JDD)
Depositario-Cabacar, Dewi Frances T.; Zelleke, Tesfaye-Getaneh
Children with developmental disabilities are at increased risk for epilepsy with a prevalence rate higher than the general population. Some of the more common developmental disorders in childhood and the features of epilepsy in these conditions are discussed. Specifically, autism, cerebral palsy, mental retardation, and attention deficit and…
Manresa-Yee, Cristina; Morrison, Ann; Larsen, Jeppe Veirum
V-Sense is a vibrotactile interface that encourages children with severe or profound cognitive, sensory and physical impairments to move. The interface makes use of touch, in particular vibrations, as a supportive function to motivate users' actions. Specifically, we propose a vibrotactile...
DeVeney, Shari L.; Hoffman, Lesa; Cress, Cynthia J.
Purpose: In this study, the authors compared a multiple-domain strategy for assessing developmental age of young children with developmental disabilities who were at risk for long-term reliance on augmentative and alternative communication (AAC) with a communication-based strategy composed of receptive language and communication indices that may…
... university affiliated programs or for projects of national significance grants must also contain an assurance... DISABILITIES, DEVELOPMENTAL DISABILITIES PROGRAM REQUIREMENTS APPLICABLE TO THE DEVELOPMENTAL DISABILITIES PROGRAM § 1385.4 Rights of individuals with developmental disabilities. (a) Section 110 of the Act, Rights...
Tyrer, F.; McGrother, C.
Background: The study of premature deaths in people with intellectual disability (ID) has become the focus of recent policy initiatives in England. This is the first UK population-based study to explore cause-specific mortality in adults with ID compared with the general population. Methods: Cause-specific standardised mortality ratios (SMRs) and…
de Geeter, K.I.; Poppes, P.; Vlaskamp, C.
Background Parents of children with disabilities are increasingly considered as experts in the field of care. Their expertise can deliver an important contribution towards planning their child's care and education. The law is increasingly taking this factor into consideration. On the one hand,
Horovitz, Max; Matson, Johnny L.; Sipes, Megan; Shoemaker, Mary; Belva, Brian; Bamburg, Jay W.
Individuals with intellectual disability (ID) have a high risk for developing comorbid psychopathology. While researchers have shown that symptoms of psychopathology remain relatively stable in children with ID over time, little research has been conducted to demonstrate symptom stability for adults with ID. Incidence of psychopathology symptoms…
Tabacaru, Cristina Dumitru
The article aims to study ways of achieving human rights by offering everyone a voice, a communicational tool which will allow accessibility and access to quality education for all, regardless of the degree of disability. The main objective of the present study was to describe the profile of communication and study the use of verbal and nonverbal…
Hoevenaars-van den Boom, M.A.A.; Antonissen, A.C.F.M.; Knoors, H.E.T.; Vervloed, M.P.J.
In persons with deafblindness, it is hard to distinguish autism spectrum disorders from several deafblind specific behaviours caused by the dual sensory impairments, especially when these persons are also intellectually disabled. As a result, there is an over-diagnosis of autism in persons who are
Kao, B; Romero-Bosch, L; Plante, W; Lobato, D
This qualitative study explored the experiences of Latino siblings of children with developmental disabilities. Parents and typically developing siblings from 15 Latino families with a child with a developmental disability participated in separate interviews. Using consensual qualitative research methodology, domains reflecting siblings' relationships, emotional experiences and communication about the disability were identified. The child's need for caregiving was a prominent topic in the sibling and parent narratives. Parents reported concerns about siblings' experience of differential treatment, whereas siblings reported concerns about restricted social activities because of their brother/sister. Including multiple informants revealed commonalities and differences in parents' and siblings' perspectives on the impact of a child's disability. The importance of considering sibling adaptation in sociocultural context is discussed. © 2011 Blackwell Publishing Ltd.
Watson, Joanne; Wilson, Erin; Hagiliassis, Nick
Background: The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) promotes the use of supported decision making in lieu of substitute decision making. To date, there has been a lack of focus on supported decision making for people with severe or profound intellectual disability, including for end of life decisions.…
Kim, Eunha; Hwang, Jowon; Park, Sukyoung
This study examined how child problem behaviour could be related to maternal Hwa-Byung (HB; Korean culture syndrome, meaning "anger illness") among Korean mothers of children with developmental disabilities. Acceptance of disabilities and parenting stress were tested as mediators for the relationship between child problem behaviour and…
Full Text Available The purpose of this paper is to provide a preliminary, qualitative review of an approach to training centre-based carers in supporting basic communication development and providing communication opportunities for the children with severe and profound disabilities in their care. In South Africa, these children are often the most neglected in terms of planning and providing appropriate interventions. For those with severe communication disabilities, an additional lack is in the area of the basic human right to meaningful interactions and communication. Sustainable strategies to provide opportunities for basic communication development of these children are urgently sought. Several effective international and local parent training programmes have been developed, but the urgent need remains to train centre-based carers who are taking care of groups of diversely disabled children in severely under-resourced settings. Non-profit organisations (NPOs have been exploring practical centre-based approaches to skills sharing in physical rehabilitation, activities for daily living, feeding and support for basic communication development. As a freelance speech therapist contracted by four NPOs to implement hands-on training in basic communication for centre-based carers of non-verbal children, the author describes a training approach that evolved over three years, in collaboration with the carers and centre managements. Implications for training (for speech therapists and for community-based rehabilitation workers and for further research are identified.
Didden, H.C.M.; Scholte, R.H.J.; Korzilius, H.P.L.M.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.B.; Lancioni, G.E.
Objective: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. Methods: Students (n = 114) with intellectual and developmental disability who were between 12–19 years of age
Didden, R.; Scholte, R.H.J.; Korzilius, H.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.; Lancioni, G.E.
OBJECTIVE: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. METHODS: Students (n = 114) with intellectual and developmental disability who were between 12-19 years of age
Didden, R.; Scholte, R.H.J.; Korzilius, H.P.L.M.; Moor, J.M.H. de; Vermeulen, A.; O'Reilly, M.F.; Lang, R.; Lancioni, G.E.
OBJECTIVE: To explore the types, prevalence and associated variables of cyberbullying among students with intellectual and developmental disability attending special education settings. METHODS: Students (n = 114) with intellectual and developmental disability who were between 12-19 years of age
... Intellectual and Developmental Disabilities; Agency Information Collection Activities; Proposed Collection; Comment Request; Financial Status Reporting Form for State Councils on Developmental Disabilities AGENCY... hours per Total burden respondents respondent response hours Financial Status Reporting Form for State...
Davis, Kathy; Carter, Simone; Myers, Elizabeth; Rocca, Nicola
Research confirms that children and young people with severe learning disabilities do not have the same level of access to high-quality care, health education and health promotion activities as children and young people without disabilities. This article discusses a quality improvement, action research project to investigate alternative approaches to health promotion that enhance the health and well-being of children and young people with complex neurodisabilities. The project involved assessment of school records and completion by staff of an eight-question survey. It found that the proactive approach of school nurses in raising awareness and understanding through questioning was positively received, and reinforced how meaningful and relevant information could be delivered to these young people. The project also had unexpected benefits, including more integrated team working, increased knowledge, greater awareness and understanding of the importance of health promotion participation, and student satisfaction. ©2018 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.
De, Sukanya; Small, Jacqueline; Baur, Louise A.
Background: The aim of this study was to determine the prevalence of overweight and obesity in children with developmental disabilities attending a metropolitan Diagnosis and Assessment Service. Method: A retrospective chart review was carried out for 98 children (67 male) aged 2-18 years. Data on age, sex, weight, height, and severity of…
Heller, Tamar; Sorensen, Amy
This article reviews the research on health promotion for adults aging with developmental disabilities. First, it examines barriers to healthy aging, including health behaviors and access to health screenings and services. Second, it reviews the research on health promotion interventions, including physical activity interventions, health education…
Gilmore, Linda; Campbell, Marilyn; Shochet, Ian
Students with developmental disabilities have many challenges with learning and adaptive behaviour, as well as a higher prevalence rate of mental health problems. Although there is a substantial body of evidence for effcacious interventions for enhancing resilience and promoting mental health in typically developing children, very few programs…
Skouge, James R.; Kelly, Mary L.; Roberts, Kelly D.; Leake, David W.; Stodden, Robert A.
This paper focuses on "technologies for voice" that are related to the self-determination of youth with developmental disabilities. The authors describe a self-determination model that values family-focused, community-referenced pedagogies employing "new media" to give voice to youth and their families. In line with the adage that a picture is…
Ncube, B. L.; Perry, A.; Weiss, J. A.
Background: Research examining the quality of life (QoL) of children with severe developmental disabilities (SDD) is limited. The present study examines parent perceptions of child QoL in children with SDD compared with typically developing (TD) children and then examines predictors of QoL for the SDD group. Method: Parents of 246 children with…
Nickel, Robert E.
This article examines reasons parents may choose a controversial alternative treatment for a child with developmental disabilities and reviews a few specific treatments--vitamin B-6 and magnesium, auditory integration training, megavitamins and minerals, Piracetam, intravenous immunoglobulin, and melatonin. Recommendations on talking with families…
Judd, Patricia A.; And Others
The job satisfaction of 35 developmentally disabled workers (17 to 38 years old) placed into competitive employment over a 2.5 year period was assessed. The Job Satisfaction Survey which measures satisfaction with the job itself, with the work group, with the company, and with the pay and job status, was administered orally in structured interview…
Bailey, Donald B., Jr.; Golden, Robert N.; Roberts, Jane; Ford, Amy
Maternal depression in families having a child with a disability has been the subject of considerable research over the past 25 years. This review was designed to describe the literature on maternal depression, critique its research methodology, identify consensus findings across studies, and make recommendations for future research. A particular…
Shalev, Ruth S.; Manor, Orly; Kerem, Batsheva; Ayali, Mady; Badichi, Navah; Friedlander, Yechiel; Gross-Tsur, Varda
Siblings and parents of 39 children with dyscalculia were assessed for arithmetic, reading, and attention disorders. Findings indicated a familial prevalence of dyscalculia almost tenfold higher than expected for the general population and suggest that dyscalculia, like other learning disabilities, has a significant familial aggregation,…
Lignugaris/Kraft, Benjamin; Salzberg, Charles L.; Rule, S.; Stowitschek, J. J.
The social interactions of employees with and without developmental disabilities were observed in two community employment settings during work and breaks. Conversations were frequent and generally concerned work-related topics. Target workers different in how often they interacted with coworkers with and without developmental disabilities. During work, workers with developmental disabilities received commands more often than did their counterparts without developmental disabilities. Work-rel...
Reichow, Brian; Gelbar, Nicholas W; Mouradjian, Keri; Shefcyk, Allison; Smith, Isaac C
The Internet often serves as a primary resource for individuals seeking health-related information, and a large and growing number of websites contain information related to developmental disabilities. This paper presents the results of an international evaluation of the characteristics and content of the top 10 ranked results (i.e., not including sponsored results - pay-per-click) returned when one of five terms related to developmental disabilities (i.e., ADHD, autism, down syndrome, learning disability, intellectual disability) was entered into one of six country specific Google online search engines (i.e., Australia (https://www.google.com.au), Canada (https://www.google.ca), Ireland (https://www.google.ie), New Zealand (https://www.google.co.nz), the United Kingdom (https://www.google.co.uk), and the United States (https://www.google.com)) on October 22, 2013. Collectively, we found that international consumers of websites related to developmental disabilities will encounter different websites with differing content and terminology, and should be critical consumers to ensure they locate the information they are seeking. Copyright © 2014 Elsevier Ltd. All rights reserved.
Kamstra, Aafke; van der Putten, Annette Aj; Vlaskamp, Carla
Most people with profound intellectual and multiple disabilities (PIMD) have limited social contact and it is unclear what is done to maintain or increase these contacts. Individual support planning (ISP) can be used in the systematic enhancement of social contacts. This study analyses the content of ISPs with respect to the social contacts of people with PIMD. ISPs for 60 persons with PIMD in the Netherlands were inductively coded and illustrated with quotations. It turned out that every ISP contained information about social contacts. Of all the quotations extracted, 71.2% were about current conditions, 6.2% were about the future and less than 1% concerned actual goals. The social contacts of people with PIMD are mentioned in their ISPs, but this is rarely translated into goals. The results of the current study suggest that attention should be paid to ensuring that professionals understand the importance of social contacts and their application in practice.
Dijkhuizen, Annemarie; Hilgenkamp, Thessa I M; Krijnen, Wim P; van der Schans, Cees P; Waninge, Aly
The ability to perform activities of daily living (ADL) as a component of participation is one of the factors that contribute to quality of life. The ability to perform ADL for persons experiencing severe/profound intellectual disability (ID) may be reduced due to their cognitive and physical capacities. However, until recently, the impact of the significantly prevalent visual impairments on the performance of activities of daily living has not yet been revealed within this group. The purpose of this prospective cross-sectional study was to investigate the impact of visual impairment on the performance of activities of daily living for persons with a severe/profound intellectual disability. The Barthel Index (BI) and Comfortable Walking Speed (CWS) were used to measure the ability of performing activities of daily living (ADL) in 240 persons with severe/profound ID and having Gross Motor Functioning Classification System (GMFCS) levels I, II or III; this included 120 persons with visual impairment. The impact of visual impairment on ADL was analyzed with linear regression. The results of the study demonstrated that visual impairment slightly affects the ability of performing activities of daily living (BI) for persons experiencing a severe/profound intellectual disability. GMFCS Levels II or III, profound ID level, and visual impairment each have the effect of lowering BI scores. GMFCS Levels II or III, and profound ID level each have the effect of increasing CWS scores, which indicates a lower walking speed. A main effect of visual impairment is present on CWS, but our results do show a substantive interaction effect between GMFCS level III and visual impairment on Comfortable Walking Speed in persons with a severe/profound intellectual disability. Visual impairment has a slight effect on ability to perform ADL in persons experiencing severe/profound ID. Copyright © 2015 Elsevier Ltd. All rights reserved.
Namasivayam, Aravind K; Yan, Tina; Wong, Wing Yiu Stephanie; van Lieshout, Pascal
Null hypothesis significance testing (NHST) dominates quantitative data analysis, but its use is controversial and has been heavily criticized. The American Psychological Association has advocated the reporting of effect sizes (ES), confidence intervals (CIs), and statistical power analysis to complement NHST results to provide a more comprehensive understanding of research findings. The aim of this paper is to carry out a sample survey of statistical reporting practices in two journals with the highest h5-index scores in the areas of developmental disability and rehabilitation. Using a checklist that includes critical recommendations by American Psychological Association, we examined 100 randomly selected articles out of 456 articles reporting inferential statistics in the year 2013 in the Journal of Autism and Developmental Disorders (JADD) and Research in Developmental Disabilities (RDD). The results showed that for both journals, ES were reported only half the time (JADD 59.3%; RDD 55.87%). These findings are similar to psychology journals, but are in stark contrast to ES reporting in educational journals (73%). Furthermore, a priori power and sample size determination (JADD 10%; RDD 6%), along with reporting and interpreting precision measures (CI: JADD 13.33%; RDD 16.67%), were the least reported metrics in these journals, but not dissimilar to journals in other disciplines. To advance the science in developmental disability and rehabilitation and to bridge the research-to-practice divide, reforms in statistical reporting, such as providing supplemental measures to NHST, are clearly needed.
Natasha CHICHEVSKA JOVANOVA
Full Text Available Parents’ reactions, in the moment when they find out that their child is with developmental disabilities, are absolutely individual. A lot of parents need months, while some of them need years to face the fact that their child is with developmental disabilities. The state and the crises that arise are very hard to be prevented, however they could be overcomed by a good professional help and support. The aim of this research is to examine the stress level that the parents of these children experience as well as the support that they receive by the family and the local community. Thirty one parents of children with intellectual disabilities, cerebral paralysis and visual impairment have been inquired. The questionnaire referred to the way of communication between professionals and parents, the stress level that they experienced because of their child and the support they received from their close family and other family members, their friends and the local community. For parents, the most stressful thing is the moment of finding out their child’s developmental disabilities. The biggest support they receive from their partners and parents.
Sipowicz, Kasper; Żuraw, Hanna; Witusik, Andrzej; Mokros, Łukasz; Najbert, Edyta; Pietras, Tadeusz
People with severe and profound grade disabilities are the subject of interest in psychiatry, clinical psychology and special pedagogy. Unfortunately, the paradigmatic approach to special education based on postmodern philosophy is in contrast to the biomedical approach that is based on the positivist and Cartesian models. The paper is an attempt to systematize the similarities and differences between the humanistic approach and the modern biomedical model, which, despite the apparent differences, do not differ so much from each other. Work with a person disabled intellectually in the severe or profound degree is governed by the principles of methodical realism, taking into account to an equal extent the principal deficits, the concomitant diseases, limitations and the social context. The deeper the impairment and disability is, the smaller is the role of the humanistic paradigm in work with the client in the medical management and educational process. Changing the paradigms of special pedagogy has drawn attention to the social context of disability, separating, however, special pedagogy from modern medicine and psychology, cognitive-oriented and psychometry-based. The postmodern paradigm has become an ideology, which makes it difficult to work with deeply disabled people. Only the multidirectional approach including a variety of paradigms makes it possible to provide integrational aid to people with severe and profound grade intellectual disabilities. Working with such a disabled person should take into account equally the biomedical and humanistic aspects. © 2018 MEDPRESS.
Full Text Available The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD was the first legally binding instrument explicitly focused on how human rights apply to people with disability. Amongst their obligations, consistent with the social model of disability, the Convention requires signatory nations to recognise that “…persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and mandates signatory nations to develop “…appropriate measures to provide access by persons with disability to the support they may require in exercising their legal capacity”. The Convention promotes supported decision-making as one such measure. Although Australia ratified the UNCRPD in 2008, it retains an interpretative declaration in relation to Article 12 (2, 3, 4, allowing for the use of substituted decision-making in situations where a person is assessed as having no or limited decision-making capacity. Such an outcome is common for people with severe or profound intellectual disability because the assessments they are subjected to are focused on their cognition and generally fail to take into account the interdependent nature of human decision-making. This paper argues that Australia’s interpretative declaration is not in the spirit of the Convention nor the social model of disability on which it is based. It starts from the premise that the intention of Article 12 is to be inclusive of all signatory nations’ citizens, including those with severe or profound cognitive disability. From this premise, arises a practical need to understand how supported decision-making can be used with this group. Drawing from evidence from an empirical study with five people with severe or profound intellectual disability, this paper provides a rare glimpse on what supported decision-making can look like for people with severe or profound intellectual disability. Additionally, it describes the importance of
Call, Nathan A; Mevers, Joanna Lomas; McElhanon, Barbara O; Scheithauer, Mindy C
Achieving continence of one's bowel movements is a key step in development and failure to do so leads to many negative consequences. Treatments for encopresis appearing in the literature have employed behavioral strategies; medications such as suppositories, laxatives, or enemas; and in some studies a combination of these approaches. To date, attempts to extend successful treatments for encopresis in typically developing children to those with developmental disabilities have been limited. The current study included three participants diagnosed with developmental disabilities who had a history of encopresis. None of the participants had a continent bowel movement under baseline conditions. Continent bowel movements increased during treatment that included the addition of suppositories to elicit continent bowel movements. Two participants began having independent continent bowel movements (i.e., without requiring suppositories) and medication was successfully faded out for the remaining participant. Treatment took between 13 and 21 days. © 2017 Society for the Experimental Analysis of Behavior.
Salvador-Carulla, Luis; Reed, Geoffrey M; Vaez-Azizi, Leila M; Cooper, Sally-Ann; Martinez-Leal, Rafael; Bertelli, Marco; Adnams, Colleen; Cooray, Sherva; Deb, Shoumitro; Akoury-Dirani, Leyla; Girimaji, Satish Chandra; Katz, Gregorio; Kwok, Henry; Luckasson, Ruth; Simeonsson, Rune; Walsh, Carolyn; Munir, Kemir; Saxena, Shekhar
Although "intellectual disability" has widely replaced the term "mental retardation", the debate as to whether this entity should be conceptualized as a health condition or as a disability has intensified as the revision of the World Health Organization (WHO)'s International Classification of Diseases (ICD) advances. Defining intellectual disability as a health condition is central to retaining it in ICD, with significant implications for health policy and access to health services. This paper presents the consensus reached to date by the WHO ICD Working Group on the Classification of Intellectual Disabilities. Literature reviews were conducted and a mixed qualitative approach was followed in a series of meetings to produce consensus-based recommendations combining prior expert knowledge and available evidence. The Working Group proposes replacing mental retardation with intellectual developmental disorders, defined as "a group of developmental conditions characterized by significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behaviour and skills". The Working Group further advises that intellectual developmental disorders be incorporated in the larger grouping (parent category) of neurodevelopmental disorders, that current subcategories based on clinical severity (i.e., mild, moderate, severe, profound) be continued, and that problem behaviours be removed from the core classification structure of intellectual developmental disorders and instead described as associated features.
Waninge, A.; Rook, R. A.; Dijkhuizen, A.; Gielen, E.; van der Schans, C. P.
Caregivers of persons with profound intellectual and multiple disabilities (PIMD) often describe the quality of the daily movements of these persons in terms of flexibility or stiffness. Objective outcome measures for flexibility and stiffness are muscle tone or level of spasticity. Two instruments used to grade muscle tone and spasticity are the…
Waninge, A.; Rook, R.A.; Dijkhuizen, A.; Gielen, E.; van der Schans, C.P.
Caregivers of persons with profound intellectual and multiple disabilities (PIMD) often describe the quality of the daily movements of these persons in terms of flexibility or stiffness. Objective outcome measures for flexibility and stiffness are muscle tone or level of spasticity. Two instruments
Dijkhuizen, Annemarie; Hilgenkamp, Thessa I.M.; Krijnen, Wim; van der Schans, Cees; Waninge, Aly
Background The ability to perform activities of daily living (ADL) as a component of participation is one of the factors that contribute to the quality of life. The ability to perform ADL for persons experiencing severe/profound intellectual disability (ID) may be reduced due to their cognitive and
ten Brug, Annet
In order to include persons with profound intellectual and multiple disabilities (PIMD) into our storytelling culture, multi-sensory storytelling (MSST) has been developed. In a multi-sensory book, verbal text is supported by sensory stimuli, the form and content of the book are adjusted to the
Poppes, P.; Putten, van der Annette; Post, W.; Frans, N.; ten Brug, A.; van Es, A.; Vlaskamp, C.
BackgroundPrevalence rates of challenging behaviour are high in children and adults with profound intellectual and multiple disabilities (PIMD). Moreover, many of these behaviours are observed daily. Direct support staff report that most challenging behaviour identified has little impact on the
Poppes, P.; van der Putten, A.; Post, W.; Frans, N.; ten Brug, A.; van Es, A.; Vlaskamp, C.
Background: Prevalence rates of challenging behaviour are high in children and adults with profound intellectual and multiple disabilities (PIMD). Moreover, many of these behaviours are observed daily. Direct support staff report that most challenging behaviour identified has little impact on the person with PIMD and attribute challenging…
Dijkhuizen, Annemarie; Hilgenkamp, Thessa I. M.; Krijnen, Wim P.; Schans, van der Cees P.; Waninge, Aly
Background: The ability to perform activities of daily living (ADL) as a component of participation is one of the factors that contribute to quality of life. The ability to perform ADL for persons experiencing severe/profound intellectual disability (ID) may be reduced due to their cognitive and
Kamstra, Aafke; van der Putten, Annette; Vlaskamp, Carla
Most people with profound intellectual and multiple disabilities (PIMD) have limited social contact and it is unclear what is done to maintain or increase these contacts. Individual support planning (ISP) can be used in the systematic enhancement of social contacts. This study analyses the content
Ten Brug, Annet; Munde, Vera S.; van der Putten, Annette A. J.; Vlaskamp, Carla
Introduction: Multi-sensory storytelling (MSST) is a storytelling method designed for individuals with profound intellectual and multiple disabilities (PIMD). It is essential that listeners be alert during MSST, so that they become familiar with their personalised stories. Repetition and the
Ten Brug, Annet; Munde, Vera S.; van der Putten, Annette A.J.; Vlaskamp, Carla
Introduction: Multi-sensory storytelling (MSST) is a storytelling method designed for individuals with profound intellectual and multiple disabilities (PIMD). It is essential that listeners be alert during MSST, so that they become familiar with their personalised stories. Repetition and the presentation of stimuli are likely to affect the…
Academic bioethics does not appear to be interested in communication and its ethical concerns unless communication is to do with issues such as capacity, consent, truth telling and confidentiality. In contrast practitioners are interested in actually communicating with their patients and they are often particularly perplexed when it comes to people with profound disabilities where communication appears disrupted. Although some new and not so new communication strategies, and especially intensive interaction, are available, little has been written on either the ethical concerns these may present or the deeper concepts that underpin them. This article explores the practical applications of some of these communication strategies. By engaging these strategies with theology, and specifically Pope John Paul's Theology of the Body, this article identifies and addresses some significant ethical issues that may arise, notably the risk of dualism and of objectifying the human person. Moreover it provides communication strategies with a rationale that goes beyond practicalities to one based on respect for human dignity, justice and solidarity.
Chan, J S L; Chien, W T
Recent literature has suggested that relaxation activities can reduce the challenging behaviours of people with intellectual disabilities, particularly in severe and profound grades, due to the counteractive effect of muscle relaxation on emotional frustration or psychological distress. Despite having inconclusive evidence, multisensory environment (MSE) and massage therapy (MT) are the commonly used approaches to relaxation among these people. However, these two approaches have not yet practised or tested in combination for reducing these people's challenging behaviours. A preliminary clinical efficacy trial was conducted to evaluate the effects of MT, MSE and their combined use for residents with intellectual disabilities in a long-term care facility on reducing their challenging behaviours. Eligible residents were recruited and randomly assigned to one of the four study groups (n = 11-12 per group), that is, MT in MSE, MSE alone, MT alone or usual care, for a 10-week intervention after a 1-month washout period. Outcome measures, including the Behaviour Problem Inventory, pulse and respiration rates, Behaviour Checklist and Alertness Observation Checklist, were assessed at recruitment and immediately following the interventions. A total of 42 participants (17 men and 25 women) completed the study. There were no significant differences in frequency and severity of challenging behaviours and most of the outcome measures between the four groups at post-test. Nevertheless, there were statistical significant differences on the active and inactive state (Alertness Observation Checklist) between the three treatment and control groups. Many participants in the three treatment groups changed from an active to inactive state (i.e. reduced activity levels) throughout the interventions, especially the MT in MSE. Such inactivity might suggest the participants' brief exhaustion followed by a period of alertness during the treatment activities. But their attention span and
Li, S; Ng, J
This qualitative study identifies areas of expertise and deficits in the specific knowledge and practical skills of nurses in the care of dying patients with profound learning disabilities in one NHS Primary Care Trust in the UK. In response to these findings, we have developed a simple observational checklist applicable to profound learning disability nursing to identify disease-related personality and physiological changes. The method consists of a descriptive case study of five nurses qualified in learning disabilities nursing, using semi-structured interviews. The disease trajectory was used as a framework of reference to guide the data analysis. Themes showed were 'certainty of knowing' about disease-related changes in patients' habits and behaviour and 'uncertainty and ambiguity' in the patho-physiology of advanced diseases and disease progression. This study interprets a lack of patho-physiological knowledge in both malignant and non-malignant diseases leading to delayed diagnosis and timely intervention. Timeliness of observation and intervention are emphasised.
Full Text Available The Arab family in Israel is still embedded in the traditional society with extended family support systems, but we see a population in transition influenced by the surrounding society. This paper looks at the different religious attitudes toward the exceptional people in our society (i.e., the family reaction to a child born with intellectual or developmental disability, reviews recent studies on the Arab and Bedouin families in Israel, and presents data on the Arab population in residential care centers.Today, out of 57 residential care centers in Israel for persons with intellectual disability, 13 (22.8% are providing service to the non-Jewish population. The Arab population constitutes 12–13% of the total residential care population, lower than the 19–20% in the total population. In residential care, the Arab population is characterized by younger children with severe and profound intellectual disability. The informal family support system is still a very important factor in the Arab family in Israel, a fact that we believe should be strengthened by implementing the British and Danish model of nurse home visitation.
Goldbart, Juliet; Chadwick, Darren; Buell, Susan
People with profound intellectual and multiple disabilities (PMLD) have communication impairments as one defining characteristic. To explore speech and language therapists' (SLTs) decision making in communication interventions for people with PMLD, in terms of the intervention approaches used, the factors informing the decisions to use specific interventions and the extent to which the rationales underpinning these decisions related to the components of evidence based practice (EBP), namely empirical evidence, clinical experience and client/carer views and values. A questionnaire on communication assessment and intervention for people with PMLD was sent to SLTs in the UK to elicit information on: the communication intervention approaches they used; their rationales for their intervention choices; their use of published evidence to inform decision making. Intensive interaction and objects of reference were the communication interventions most often used with people with PMLD, with some differences between children and adults evident. Rationales provided conformed somewhat to the EBP framework though extension of the existing framework and addition of practical and organizational considerations led to a revised typology of rationale for decision making. Rationales most frequently related to the empowerment, development and behavioural preferences of the person with PMLD. Empirical research evidence was seldom mentioned by SLTs as informing intervention decision making leading to very diverse practice. There is a need for further research on the effectiveness of commonly used but under-evaluated interventions. There is also a need to alert SLTs to the evidence base supporting other approaches, particularly switch-based, cause and effect approaches. © 2014 Royal College of Speech and Language Therapists.
Holwerda, Anja; Brouwer, Sandra; de Boer, Michiel R.; Groothoff, Johan W.; van der Klink, Jac J. L.
Purpose Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental
Holwerda, A.; Brouwer, S.; de Boer, M.R.; Groothoff, J.W.; van der Klink, J.J.L.
Purpose Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental
Holwerda, Anja; Brouwer, Sandra; de Boer, Michiel R.; Groothoff, Johan W.; van der Klink, Jac J. L.
Purpose Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental
Full Text Available The purpose of this qualitative study was to examine how and when children with developmental disabilities aged nine to 12 years spontaneously demonstrated play behaviors indicative of intrinsic motivation. Data was collected from six child participants and four parent participants through the use of the Pediatric Volitional Questionnaire (PVQ and semi-structured photo-elicitation interviews. Overall, the children who participated in this study sought out play experiences with which they were familiar in their natural environments. Specifically, they sought out experiences that afforded them the opportunity to exercise control over their environment and create a sense of predictability. Each of the children assumed the role of “orchestrator” and conducted his or her engagement in play occupations. The children demonstrated some spontaneous play within their social environment; however, many developmentally age-appropriate behaviors were not observed.
Gilboa, Yafit; Fuchs, Reut
We aim to examine the pattern of participation of children with intellectual developmental disabilities (IDD) or global developmental delay (GDD) in comparison with typically developing preschoolers. In addition, to identify environmental and personal factors associated with their participation, 20 children with mild to moderate GDD or IDD, and 24 age- and gender-matched controls, aged 3 to 6 years, were assessed using the Assessment of Preschool Children's Participation and the Environmental Restriction Questionnaire. Significant differences were found between the groups, both for general scales of participation and for each activity area. For the IDD/GDD group, participation was significantly negatively correlated with environmental restrictions at home. For the control group, participation was correlated with demographic variables. Typically developing children participate at a higher frequency and in a more diverse range of activities compared with children with IDD/GDD. Associations between participation and contextual factors varied depending on the child's health condition.
Neely-Barnes, Susan Louise; Elswick, Susan E
The philosophy of inclusion for people with intellectual and developmental disabilities (IDD) has evolved over the last 50 years. Over time, inclusion research has shifted from a focus on deinstitutionalization to understanding the extent to which individuals with IDD are meaningfully involved in the community and social relationships. Yet, there has been no agreed on way to measure inclusion. Many different measurement and data collection techniques have been used in the literature. This study proposes a brief measure of inclusion that can be used with family members and on survey instruments.
Khalid, K.; Al-Salamah, Saleh M.
This study highlights the spectrum of general surgical problems necessitating admission on intellectually disabled adult patients. Problems encountered in the management and the ways to overcome various difficulties are highlighted. Prospective collection of data on 63 consecutive developmentally disabled adult patients admitted to the Department of General Surgery, Riyadh Medical Complex (RMC), Riyadh, Kingdom of Saudi Arabia for various indications from January 2000 through December 2004. Demographic details, clinical presentation, diagnostic modalities, associated physical and neurological disabilities, coexisting medical condition, treatment options, morbidity and mortality were analyzed. Various difficulties encountered during the management and mean to overcome these problems are addressed. Sixty-three patients accounted for 71 admissions. Mean age was 26.7 years with a male preponderance (4.25:1). Fifty-four patients were admitted for various emergency conditions. History of pica could be obtained in 33% of the cases. Twenty-seven patients were admitted for acute abdomen. Volvulus of the colon (22.2%) and pseudo-obstruction (18.5%) were the most common causes of acute abdomen. Twenty-one patients were admitted with upper gastrointestinal bleeding. Reflux esophagitis was the most common cause of bleeding (62%). Overall morbidity was 41% for emergency admissions and 22% for elective surgery. Hospital mortality was 21.4% for emergency surgery. There was no death in elective cases. Developmentally disabled patients comprise a special class of patients with peculiar management problems. The treating clinician should be aware of various unexpected conditions not found as frequently in the normal patient population. Apparent lack of pain does not exclude an acute emergency. Possible surgical condition should be suspected if there is vomiting, abdominal distension, fever, increased irritability of recent onset. Male gender and history of pica are added risk factors
Delgado, Christine E. F.
Special education outcomes were evaluated for 3,608 children (2,513 males) with a preschool history of developmental disability. Sixty-six percent of the children had an identified disability in fourth grade. The percentage of children with a disability at outcome varied across preschool disability categories from 54% to 96%. The consistency of…
Valeska Aparecida Fernandes SOUZA
Full Text Available The aim of the present study was to investigate factors associated with bruxism in children aged from 1 to 13 years with developmental disabilities. A total of 389 dental records were examined. The bruxism analyzed was determined based on parental reports. The following variables were also analyzed: gender, age, International Code of Diseases (ICD, mouth breathing, history of gastroesophageal reflux, use of psychotropic drugs, gingival status, reports of xerostomia, hyperkinesis, pacifier use, thumb sucking and involuntary movements. For the purposes of analysis, the individuals were categorized as being with and without bruxism. Variables with a p-value < 0.25 in the bivariate analysis were incorporated into the logistic regression models. Females had a 0.44-fold (95%CI: 0.25 to 0.78 greater chance of exhibiting bruxism than males. Individuals with gastroesophageal reflux had a 2.28-fold (95%CI: 1.03 to 5.02 greater chance of exhibiting bruxism. Individuals with reported involuntary movements had a 2.24-fold (95%CI: 1.19 to 4.24 greater chance of exhibiting bruxism than those without such movements. Exhibiting involuntary movements, the male gender and gastroesophageal reflux are factors associated with bruxism in children with developmental disabilities.
Souza, Valeska Aparecida Fernandes; Abreu, Mauro Henrique Nogueira Guimarães; Resende, Vera Lúcia Silva; Castilho, Lia Silva
The aim of the present study was to investigate factors associated with bruxism in children aged from 1 to 13 years with developmental disabilities. A total of 389 dental records were examined. The bruxism analyzed was determined based on parental reports. The following variables were also analyzed: gender, age, International Code of Diseases (ICD), mouth breathing, history of gastroesophageal reflux, use of psychotropic drugs, gingival status, reports of xerostomia, hyperkinesis, pacifier use, thumb sucking and involuntary movements. For the purposes of analysis, the individuals were categorized as being with and without bruxism. Variables with a p-value bruxism than males. Individuals with gastroesophageal reflux had a 2.28-fold (95%CI: 1.03 to 5.02) greater chance of exhibiting bruxism. Individuals with reported involuntary movements had a 2.24-fold (95%CI: 1.19 to 4.24) greater chance of exhibiting bruxism than those without such movements. Exhibiting involuntary movements, the male gender and gastroesophageal reflux are factors associated with bruxism in children with developmental disabilities.
Vos, Pieter; De Cock, Paul; Munde, Vera; Petry, Katja; Van Den Noortgate, Wim; Maes, Bea
Identifying emotions in people with severe and profound intellectual disabilities is a difficult challenge. Since self-reports are not available, behaviour is the most used source of information. Given the limitations and caveats associated with using behaviour as the sole source of information about their emotions, it is important to supplement behavioural information with information from another source. As it is accepted that emotions consist of language, behaviour and physiology, in this article we investigated if physiology could give information about the emotions of people with severe and profound intellectual disabilities. To this aim we tested hypotheses derived from the motivational model of Bradley, Codispoti, Cuthbert, and Lang (2001) about the relation between heart rate and the valence of emotions and between heart rate, skin conductance and skin temperature and behavioural expressions of emotions of people with severe and profound intellectual disability. We presented 27 participants with 4 staff-selected negative and 4 staff-selected positive stimuli. The situations were videotaped and their heart rate, skin conductance and skin temperature was measured. Each behaviour of the participant was coded using the observational method developed by Petry and Maes (2006). As hypothesized, we found a lower heart rate when participants were presented with negative stimuli than when they were presented with positive stimuli in the first 6s of stimuli presentation. Their skin temperature was higher for the expression of low intensity negative emotions compared to the expression of low intensity positive emotions. The results suggest that, as with people without disability, heart rate and skin temperature can give information about the emotions of persons with severe and profound ID. Copyright © 2012 Elsevier Ltd. All rights reserved.
Magill-Evans, Joyce; Galambos, Nancy; Darrah, Johanna; Nickerson, Christy
To identify the personal, family, and community factors that facilitate or hinder employment for young adults with developmental motor disabilities. Quantitative methods with an embedded qualitative component were used. Seventy-six persons between the ages of 20 and 30 years of age (Mean = 25, SD = 3.1) with a diagnosis of either cerebral palsy or spina bifida completed questionnaires addressing factors such as depression, and participated in a semi-structured interview that allowed participants to describe their experiences with education, employment, transportation, and other services. Almost half of the participants (n = 35) were not currently employed. Hierarchical regression analyses indicated that gender (females were less likely to be employed), IQ (lower IQ associated with unemployment), and transportation dependence accounted for 42% of the variance in employment. Themes emerging from content analysis of the interviews supported the findings related to transportation barriers. Social reactions to disability limited employment opportunities, and participants often felt stuck in terms of employment options with limited opportunities for advancement. Transportation is a significant barrier to employment and innovative solutions are needed. Issues related to gender need to be considered when addressing employment inequities for persons with primarily motor disabilities.
Gauthier-Boudreault, Camille; Gallagher, Frances; Couture, Mélanie
At the age of 21, the trajectory of services offered to youth with profound intellectual disability (ID) change significantly since access to specialised services is more limited. Despite the desire of parents to avoid any impact on their child, several factors can influence the course of this transition. However, there is little research on facilitators and obstacles to the transition to adulthood, and impacts on people with a profound ID. It is therefore difficult to provide solutions that meet their specific needs. The study aimed to document the needs of parents and young adults with profound ID during and after the transition to adulthood by exploring their transitioning experience and factors that influenced it. Using a descriptive qualitative design, two individual semi-structured interviews were conducted with fourteen (14) parents of young adults aged between 18 and 26 with a profound ID. At this point, many material, informative, cognitive and emotional needs of young adults and their parents are not met. Obstacles, mainly organisational, persist and result in a particularly difficult transition to adulthood experience. By knowing the specific needs of these families, it is possible to develop and implement solutions tailored to their reality. WHAT THE PAPERS ADDS?: The transition to adulthood is a critical period for families with young adults with an intellectual disability (ID), a reality observed internationally. Current literature on all levels of ID suggests some barriers to transition that lead to negative impacts on both parents and young adults with ID. However, presently, very little research exists on the reality of families of young adults with profound ID and factors influencing transition to adult life. Most of studies target people with mild to moderate ID. Considering the significant disabilities of people with profound ID, it is possible to imagine that their experience of transition will be even more difficult and they will present
Dincer, Baris; Erbas, Dilek
This study describes the communication repair behaviors used by nonverbal students with developmental disabilities in the interactions they were involved in with their teachers during free play activities. All children were students at centers serving student with developmental disabilities at Anadolu University in Turkey. Data were collected by…
Neely-Barnes, Susan; Graff, J. Carolyn; Marcenko, Maureen; Weber, Lisa
Family involvement in planning and choosing services has become a key intervention concept in developmental disability services. This study (N = 547) modeled patterns of family decision making and assessed benefits to persons with developmental disabilities (DDs) and their family members. A latent profile analysis identified 4 classes that were…
The present study was designed to examine the effectiveness of visual supports on teaching simultaneous prompting procedure to mothers to provide home-based instruction to their children with developmental disabilities. Three preschool-aged children with moderate developmental disabilities and their mothers were the participants. A multiple probe…
Palmer, S. B.; Wehmeyer, M. L.; Davies, D. K.; Stock, S. E.
Background: A nationwide survey of family members of people with intellectual and developmental disabilities ranging in age from birth through adulthood was conducted to replicate a similar effort by Wehmeyer and update the knowledge base concerning technology use by people with intellectual and developmental disabilities. Method: Survey responses…
Walling, Teresa; Potts, Bridget; Fortune, Jon; Cobb, Ginny L.; Fortune, Barbara
This report describes the outcomes of a Wyoming program that provides host families for individuals with developmental disabilities. Host families work with certified Medicaid providers of home and community-based services for people with developmental disabilities and provide residential habilitation to an adult who is accepted as a member of…
Badia, M.; Orgaz, M. B.; Verdugo, M. A.; Ullan, A. M.
Background: People with developmental disabilities are at high risk for a limited participation in leisure activities. The aim of this study was to investigate the participation in, preference for and interest in leisure activities of young and adults with developmental disabilities, and to examine the factors associated with leisure activity.…
Badia, Marta; Orgaz, María Begoña; Verdugo, Miguel Á.; Ullán, Ana M.; Martínez, Magdalena
Background: Studies of people with developmental disabilities suggest that participation in leisure activities might be a key factor for good quality of life. This study explores the relationships between objective and subjective quality of life and leisure participation of adults with developmental disabilities. Materials and Methods: A…
Hastings, Richard P.
Siblings of children with developmental disabilities were assessed twice, 2 years apart (N = 75 at Time 1, N = 56 at Time 2). Behavioral adjustment of the siblings and their brother or sister with developmental disability was assessed. Comparisons of adjustment for siblings of children with autism, Down syndrome, and mixed etiology mental…
Richards, Deborah; Miodrag, Nancy; Watson, Shelley L.
This paper presents a lifespan perspective of sexuality issues for individuals with developmental disabilities. Individuals with developmental disabilities are human beings who have historically been denied the right to express their sexuality or engage in sexual relationships due to misconceptions or negative attitudes. Using a hypothetical case…
Steinfeld, Hallie; Cho, Megan T.; Retterer, Kyle; Person, Rick; Schaefer, G. Bradley; Danylchuk, Noelle; Malik, Saleem; Wechsler, Stephanie Burns; Wheeler, Patricia G.; van Gassen, Koen L I; Terhal, P. A.; Verhoeven, Virginie J M; van Slegtenhorst, Marjon A.; Monaghan, Kristin G.; Henderson, Lindsay B.; Chung, Wendy K.
Human immunodeficiency virus type I enhancer binding protein 2 (HIVEP2) has been previously associated with intellectual disability and developmental delay in three patients. Here, we describe six patients with developmental delay, intellectual disability, and dysmorphic features with de novo likely
Ferreri, Summer J.; Plavnick, Joshua B.
Many children with severe developmental disabilities emit idiosyncratic gestures that may function as verbal operants (Sigafoos et al., 2000). This study examined the effectiveness of a functional analysis methodology to identify the variables responsible for gestures emitted by 2 young children with severe developmental disabilities. Potential…
Minch, Laura M.
Individuals with developmental disabilities are vulnerable to sexual abuse, and are often denied access to sexuality education. Public schools have vague curricula regarding sexuality education for general education students, curricula to which adolescents with developmental disabilities do not have access. The current study sought to determine…
Malott, Richard W.
A solution is proposed to ineffective but important contingencies which may be especially problematic for developmentally disabled persons. Components of instruction in self-management and other prerequisites to rule-governed behavior are considered and research on the topic with developmentally disabled persons is cited. (CL)
National Council for Therapy and Rehabilitation through Horticulture, Inc., Gaithersburg, MD.
Intended for persons establishing job development programs for developmentally disabled individuals, this training manual details the structure and procedures of Project PLANTWORK, a 21-month demonstration program which placed approximately 70 workers with developmental disabilities into employment in horticulture industry firms or into…
Ambrogi, Robert; And Others
The handbook provides information in question-and-answer format on the legal rights of developmentally disabled persons, focusing on those in the state of Massachusetts. An introductory section discusses developmental disabilities and advocacy. The main section, on legal rights, covers such areas as discrimination (including Section 504 of the…
Gallagher, Stephen; Whiteley, Jenny
The present study tested whether parents caring for children with developmental disabilities would have higher blood pressure compared to parents of typically developing children (controls). It also examined the psychosocial factors underlying this observation. Thirty-five parents of children with developmental disability and thirty controls…
Lunsky, Yona; Elserafi, Jonny
Antipsychotic medication rates are high in adults with developmental disability. This study considered rates of antipsychotic use in 743 adults with developmental disability who had experienced a psychiatric crisis. Nearly half (49%) of these adults were prescribed antipsychotics. Polypharmacy was common with 22% of those prescribed antipsychotics…
Salter, Erica K
Through an exploration of the experience of severe and profound intellectual disability, this essay will attempt to expose the predominant, yet usually obscured, medical anthropology of the child and examine its effects on pediatric bioethics. I will argue that both modern western society and modern western medicine do, actually, have a robust notion of the child, a notion which can find its roots in three influential thinkers: Aristotle, Immanuel Kant and Jean Piaget. Together, these philosophers offer us a compelling vision: the child is primarily a future rational, autonomous adult. While this tacit understanding has arguably widespread effects on such things as our concept of good parenting, of proper schooling, and so on, I will focus on the effect is has on the treatment of children with severe developmental disabilities. When examined in light of this population, the dominant medical anthropology of the child will be shown to be deficient. Instead, I argue for an expansion-indeed, a full reimagining-of our notions of childhood, not only to re-infuse dignity into the lives of children with SDD, but to better represent the goods of childhood, generally.
Kim, Helyn; Carlson, Abby G; Curby, Timothy W; Winsler, Adam
Despite the comorbidity between motor difficulties and certain disabilities, limited research has examined links between early motor, cognitive, and social skills in preschool-aged children with developmental disabilities. The present study examined the relative contributions of gross motor and fine motor skills to the prediction of improvements in children's cognitive and social skills among 2,027 pre-kindergarten children with developmental disabilities, including specific learning disorder, speech/language impairment, intellectual disability, and autism spectrum disorder. Results indicated that for pre-kindergarten children with developmental disabilities, fine motor skills, but not gross motor skills, were predictive of improvements in cognitive and social skills, even after controlling for demographic information and initial skill levels. Moreover, depending on the type of developmental disability, the pattern of prediction of gross motor and fine motor skills to improvements in children's cognitive and social skills differed. Implications are discussed. Copyright © 2016 Elsevier Ltd. All rights reserved.
Dang, Michelle T.
A significant number of children in the United States have developmental disabilities. Historically, many children with developmental disabilities were institutionalized and rarely seen in public. Currently, children with developmental disabilities are entitled to education and health-related support services that permit them access to public…
Matson, J. L.; Gonzalez, M. L.; Terlonge, C.; Thorson, R. T.; Laud, R. B.
Background: While researchers have attempted to address the difficulties of diagnosing affective disorders in the intellectually disabled population, diagnosing bipolar disorder in an individual with severe intellectual disability (ID) remains a challenge. The aim of this study was to identify what symptoms can predict a diagnosis of mania in the…
Burke, Meghan M; Taylor, Julie Lounds; Urbano, Richard; Hodapp, Robert M
With the growing life expectancy for individuals with intellectual and developmental disabilities, siblings will increasingly assume responsibility for the care of their brother or sister with intellectual and developmental disabilities. Using a 163-item survey completed by 757 siblings, the authors identified factors related to future caregiving expectations. Siblings expected to assume greater caregiving responsibility for their brother or sister with disabilities if they were female, had closer relationships with and lived closer to their brother or sister with intellectual and developmental disabilities, and were the lone sibling without a disability. Siblings who expected to assume higher levels of caregiving had parents who were currently more able to care for their brother or sister with disabilities. With a better understanding of who intends to fulfill future caregiving roles, support can be provided to these siblings.
McFerran, Katrina S.; Shoemark, Helen
Students with profound intellectual disabilities disorders (IDDs) have the right to participate in educational opportunities that recognize their unique resources and needs, as do all children. Because of their specific communication challenges, positive relationships with attentive communication partners are critical for success. In fact, the power of positive relationships in schools is recognized to be connected to student well-being more broadly. This article examines the case of one young man with profound IDD and his relationship with his music therapist using a duo-ethnographic informed paradigmatic case study. Video analysis based on multi-voice perspectives is used to generate hermeneutic phenomenological findings to closely examine the relationship between a young man with profound IDD and a music therapist. The voices of four allied health researchers were also gathered to inform the authors’ construction of an informed commentary on the phenomenon. The results suggest that the essence lay in a combination of attentive, responsive and creative being with the other person over time. Four principles of musical engagement were identified in the video footage as critical to the meaningful relationships through music: the music therapist listens; the music therapist takes responsibility for structure; spontaneous initiation is sought from the young person; and the relationship is built over time. These concepts are contextualized within a discussion of student well-being that is underpinned by positive relationships and leads to students achieving their full potential within diverse school contexts. PMID:23930986
McFerran, Katrina S; Shoemark, Helen
Students with profound intellectual disabilities disorders (IDDs) have the right to participate in educational opportunities that recognize their unique resources and needs, as do all children. Because of their specific communication challenges, positive relationships with attentive communication partners are critical for success. In fact, the power of positive relationships in schools is recognized to be connected to student well-being more broadly. This article examines the case of one young man with profound IDD and his relationship with his music therapist using a duo-ethnographic informed paradigmatic case study. Video analysis based on multi-voice perspectives is used to generate hermeneutic phenomenological findings to closely examine the relationship between a young man with profound IDD and a music therapist. The voices of four allied health researchers were also gathered to inform the authors' construction of an informed commentary on the phenomenon. The results suggest that the essence lay in a combination of attentive, responsive and creative being with the other person over time. Four principles of musical engagement were identified in the video footage as critical to the meaningful relationships through music: the music therapist listens; the music therapist takes responsibility for structure; spontaneous initiation is sought from the young person; and the relationship is built over time. These concepts are contextualized within a discussion of student well-being that is underpinned by positive relationships and leads to students achieving their full potential within diverse school contexts.
Valicenti-McDermott, Maria; Lawson, Katharine; Hottinger, Kathryn; Seijo, Rosa; Schechtman, Merryl; Shulman, Lisa; Shinnar, Shlomo
The level of parental stress in families of children with autism and other developmental disabilities and its association with child comorbid symptoms was studied in an ethnically diverse population, in a cross-sectional study with structured interview. The sample included 50 families of children with autism and 50 families of children with other developmental disabilities, matched by age/gender. Interview included Parenting Stress Index-Short Form, Gastrointestinal Questionnaire, Child Sleep Habits Questionnaire, and Aberrant Behavior Checklist. In this ethnically diverse sample, parental stress was significantly higher for the autism group and for non-Hispanic and US-born mothers. In both study groups, parental stress was related to child irritability. Parental stress was also related to gastrointestinal problems in the autism group and to sleep difficulties in the developmental disabilities group. Targeting child irritability may be particularly important in reducing parental stress for families of children with autism and other developmental disabilities. © The Author(s) 2015.
Stodden, Robert A.; Browder, Phyllis Meighen
Success in competitive employment placement of a demonstration project serving 53 persons with developmental disabilities is associated with three factors: (1) training approach and methodology; (2) program management; and (3) trainee characteristics. (CL)
Watson, Nick J.; Parker, Andrew
The aim of this qualitative case study was to explore the role of sport (longdistance running) in the lives of a father and his son who is congenitally blind and has profound intellectual disabilities. Drawing on the works of Jean Vanier, Stanley Hauerwas, Henri Nouwen and John Hull, the major themes explored are relational and religious trust, suffering, sacrificial love, embodiment and blindness. A series of one-to-one semi-structured interviews were conducted with the father (and mother) c...
Steinberg, Marc L.; Heimlich, Laura; Williams, Jill M.
Tobacco use is the leading preventable cause of death in the United States. Although few tobacco control efforts target individuals with intellectual and/or developmental disabilities, this population may be especially vulnerable to the deleterious effects of tobacco use and dependence. Individuals with intellectual and developmental disabilities…
Janeslatt, Gunnel; Granlund, Mats; Kottorp, Anders; Almqvist, Lena
Background: Children with developmental disabilities, e.g. intellectual disability or autism, are reported to have problems in time perception, time orientation or time management, i.e. in time-processing ability (TPA). The aim was to investigate whether the problems described are diagnosis specific or reflect differences in age or in level of…
Carter, Erik W.; Asmus, Jennifer; Moss, Colleen K.
Friendships are important not only to youth development but also to the growth and expansion of social networks. Although there has long been acknowledgment of this importance for youth, such relationships can be especially elusive for transition-age students with autism, intellectual disability, and other developmental disabilities. This article…
Sandoz, Charles J.
This paper documents an approach to meeting the training requirements of the Occupational Safety and Health Act (OSHA) and the "reasonable accommodation" requirements of the Americans with Disabilities Act (ADA) for individuals with developmental disabilities. It describes a training program used with three adult workers with mild mental…
Park, Hye Ran
Menstruation is a difficult topic to address with as females with or without disabilities. It is a more significant challenge for females with developmental disabilities (DD) because it stimulates a variety of physical and psychological changes. Thus, some females with DD might have a qualitatively different experience compared to the general…
Mitchell, D. B.; Hauser-Cram, P.
Background: The importance of positive parent-adolescent relationships is stressed in research on adolescents, although very little is known about this relationship when a teen has developmental disabilities (DD). We investigated the relationships of adolescents with disabilities with their mothers and their fathers in order to answer a number of…
Gray, Jennifer A.; Truesdale, Jesslyn
The Delphi technique was used to obtain expert panel consensus to prioritize content areas and delivery methods for developing staff grief and bereavement curriculum training in the intellectual and developmental disabilities (IDD) field. The Delphi technique was conducted with a panel of 18 experts from formal and informal disability caregiving,…
Manor-Binyamini, Iris; Abu-Ajaj, Othman
This is the first study that examines the coping of siblings of children with developmental disabilities in comparison with siblings of children without disabilities in the Bedouin community in Israel. For this purpose, the study examines the components of self-esteem, stress, and growth. Data were collected from 200 adolescents. The findings of…
Pitchford, E. Andrew; Siebert, Erin; Hamm, Jessica; Yun, Joonkoo
Physical activity promotion is of need for youth with developmental disabilities. Parental perceptions of physical activity benefits may influence youth behaviors. This study investigated the relationship between parental beliefs on the importance of physical activity and physical activity levels among youth with disabilities. Parents and…
Russell, Andrew T.; Hahn, Joan Earle; Hayward, Katharine
The purpose of this study was to describe the medication management and treatment provided in a specialty outpatient psychiatry clinic for 198 community-residing children and adults with intellectual disability and other developmental disabilities (IDD) referred to the clinic and discharged between 1999 and 2008. Using a descriptive design, data…
Parish, Susan L.; Swaine, Jamie G.; Luken, Karen; Rose, Roderick A.; Dababnah, Sarah
Women with developmental disabilities are significantly less likely than women without disabilities to receive cervical and breast cancer screening according to clinical guidelines. The reasons for this gap are not understood. The present study examined the extent of women's knowledge about cervical and breast cancer screening, with the intention…
Wang, Rushu [China Yangzte Three Gorges Project Development Corp., Yichang Hubei (China)
The Three Gorges dam project on the Yangtze river will have a profound effect on the people, the environment and cultural heritage sites. The dam will be the world's biggest and will provide almost 85 BkWh of hydro power per annum. A noticeable benefit will be a greatly reduced incidence of flooding in the Jingjiang reaches of the river. Additional benefits will be improved local navigation, climate and enhanced water quality. The main unwelcome impacts were loss of farmland and resettlement of people but here the government have been particularly careful to provide the relocated people with a reasonable standard of new accommodation and farmland. The loss of natural vegetation will be small but there are endangered species of birds and animals living in the region. A number of negative environmental affects (dust noise, incidence of certain diseases) and how they are to be mitigated are mentioned. (UK)
Cai, Sean X.; Kornspan, Alan S.
The physical activity patterns of students with disabilities have been studied in order to understand how much moderate and vigorous daily physical exercise is obtained. Literature suggests that students with disabilities are less physically active as compared to children without disabilities. As a result of being less physically active, these…
Namkung, Eun Ha; Song, Jieun; Greenberg, Jan S; Mailick, Marsha R; Floyd, Frank J
We prospectively examined the risk of divorce in 190 parents of children with developmental disabilities compared to 7,251 parents of children without disabilities based on a random sample drawn from the community and followed longitudinally for over 50 years. A significant interaction between the parental group status and number of children was found: In the comparison group, having a larger number of children was related to an increased risk of divorce, whereas the number of children did not increase divorce risk among parents of children with developmental disabilities.
Song, Jieun; Greenberg, Jan S.; Mailick, Marsha R.; Floyd, Frank J.
We examined prospectively the risk of divorce in 190 parents of children with developmental disabilities compared to 7,251 parents of children without disabilities based on a random sample drawn from the community and followed longitudinally for over 50 years. A significant interaction between the parental group status and number of children was found: In the comparison group, having a larger number of children was related to an increased risk of divorce, whereas the number of children did not increase divorce risk among parents of children with developmental disabilities. PMID:26505872
Palley, H A; Van Hollen, V
This article explores how the trends toward long-term community care affecting people with developmental disabilities developed. Appropriateness of care and quality of life issues are discussed. The article also reviews the development of long-term care for frail and disabled elderly people and explores the arguments for a continuum of care that have developed in this area. The authors conclude that future policies with respect to meeting long-term care needs for people with developmental disabilities must be addressed flexibly on an individual basis, related to individual needs, and must provide a continuum of care services.
Work preferences, life values, and personal views of top math/science graduate students and the profoundly gifted: Developmental changes and gender differences during emerging adulthood and parenthood.
Ferriman, Kimberley; Lubinski, David; Benbow, Camilla P
Work preferences, life values, and personal views of top math/science graduate students (275 men, 255 women) were assessed at ages 25 and 35 years. In Study 1, analyses of work preferences revealed developmental changes and gender differences in priorities: Some gender differences increased over time and increased more among parents than among childless participants, seemingly because the mothers' priorities changed. In Study 2, gender differences in the graduate students' life values and personal views at age 35 were compared with those of profoundly gifted participants (top 1 in 10,000, identified by age 13 and tracked for 20 years: 265 men, 84 women). Again, gender differences were larger among parents. Across both cohorts, men appeared to assume a more agentic, career-focused perspective than women did, placing more importance on creating high-impact products, receiving compensation, taking risks, and gaining recognition as the best in their fields. Women appeared to favor a more communal, holistic perspective, emphasizing community, family, friendships, and less time devoted to career. Gender differences in life priorities, which intensify during parenthood, anticipated differential male-female representation in high-level and time-intensive careers, even among talented men and women with similar profiles of abilities, vocational interests, and educational experiences. (c) 2009 APA, all rights reserved).
Dossa, P A
The literature refers to older people with developmental disabilities as the "new service population." How and why this population emerged as a special category is discussed conceptually with reference to social systems theory. A brief review of social systems theory and some basic systemic tenets are presented. Systemic tenets are employed in examining the historical development of social gerontology and present trends in the service-delivery system. I show that the systemic variable of the economic model of human development has significantly impacted on the making of older people with developmental disabilities a dependent population. In the conclusion the systems perspective is explored in relation to recognizing the liminal, in-between parts between components. It is argued that such a perception minimizes the dichotomy between older people with developmental disabilities and the non-disabled population, paving the way for a genuine encounter.
Brug, Annet Ten; Van der Putten, Annette A J; Vlaskamp, Carla
Knowledge about the preferences and abilities of children with profound intellectual and multiple disabilities (PIMDs) is crucial for providing appropriate activities. Multi-sensory storytelling (MSST) can be an ideal activity for gathering such knowledge about children with PIMDs. The aim of this study was to analyse whether using MSST did lead to changes in teachers' knowledge about preferences and abilities and whether this knowledge was then applied in practice. Three dyads of children with PIMDs and their teachers read an MSST book 20 times during a 10-week period. A questionnaire designed to identify the teachers' current knowledge was filled in before the 1st and again after the 10th and 20th reading sessions. Also, the teachers were asked for their opinion about their newly gathered knowledge. In all three cases, changes in the teachers' knowledge were observed. However, teachers are insufficiently aware of their new knowledge and do not apply it in practice.
Munir, Kerim M
The study summarizes supportive epidemiological data regarding the true co-occurrence (comorbidity) and course of mental disorders in children with intellectual disability/intellectual developmental disorders (ID/IDD) across the lifespan. Published studies involving representative populations of children and adolescents with ID/IDD have demonstrated a three to four-fold increase in prevalence of co-occurring mental disorders. The effect of age, sex, and severity (mild, moderate, severe, and profound) and socioeconomic status on prevalence is currently not clearly understood. To date there are no prevalence estimates of co-occurring mental disorders in youth identified using the new DSM-5 (and proposed ICD-11) definition of ID/IDD using measures of intellectual functions and deficits in adaptive functioning with various severity levels defined on the basis of adaptive functioning, and not intellectual quotient scores. The true relationship between two forms of morbidity remains complex and causal relationships that may be true for one disorder may not apply to another. The new conceptualization of ID/IDD offers a developmentally better informed psychobiological approach that can help distinguish co-occurrence of mental disorders within the neurodevelopmental section with onset during the developmental period as well as the later onset of other mental disorders.
Axelsson, Anna Karin; Imms, Christine; Wilder, Jenny
Participation throughout one's life plays a significant role for development and emotional well-being. For this reason, there is a need to identify ways to facilitate participation in family activities for children and adolescents with profound intellectual and multiple disabilities (PIMD). The study design was qualitative and explorative, based on semi structured interviews with 11 parents and 9 personal assistants of children with PIMD. The interviews revealed participation-facilitating strategies relating to the children's/adolescent's proximal environment, such as "Availability and acceptability of the activity", "Good knowledge about the child" and a "A positive attitude of people close to the child", as well as strategies related to the children/adolescents themselves: "Sense of belonging", "Possible for the child/adolescent to understand", "Opportunities to influence" and "Feeling of being needed". Children and adolescents with PIMD are dependent on support obtained through their environment. The identified strategies, individually adapted through awareness and knowledge by the parents and the personal assistants, provide important evidence to assist our understanding in gaining understanding about how to improve participation in family activities of children and adolescents with PIMD. Participation-facilitating strategies related to the child/adolescent and his or her proximal environments are identified to improve participation in children and adolescents with profound intellectual and multiple disabilities (PIMD). Examples of strategies for the child's/adolescents' proximal environment include "good knowledge about the child/adolescent", and, for the child/adolescent, include creating "sense of belonging" and "opportunities to influence". Identifying and making these strategies explicit may assist in enhancing the participation of children and adolescents with PIMD in family activities. People in the child's/adolescent's proximal environment need to set
Lauer, Emily; McCallion, Philip
Background: Monitoring population trends including mortality within subgroups such as people with intellectual and developmental disabilities and between countries provides crucial information about the population's health and insights into underlying health concerns and the need for and effectiveness of public health efforts. Methods: Data from…
Brasić, James Robert; Barnett, Jacqueline Y; Kowalik, S; Tsaltas, Margaret Owen; Ahmad, Raheela
Although the risk of the eventual development of tardive dyskinesia and other persistent adverse effects of neuroleptics is high, among adults with mental retardation and other developmental disabilities, neuroleptics may ameliorate dyskinesias, aggression, and inattention. The effects of traditional neuroleptics on a comparable population of children and adolescents with mental retardation and other developmental disabilities are unknown. The objective of this study was to develop an assessment battery to describe the effects of traditional neuroleptics on the behavior and movements of a small sample of children and adolescents with mental retardation and other developmental disabilities. 13 children and adolescents aged 6 to 16 years attending a developmental disabilities clinic were evaluated utilizing a Movement Assessment Battery to measure behavior and motions. Five subjects took traditional neuroleptic medications. Trained raters can reliably assess the movements and behaviors of children and adolescents with multiple handicaps. Children and adolescents with developmental disabilities may be vulnerable to experience functional impairment and akathisia, tics, and other dyskinesias when administered traditional neuroleptic medications.
Findings from needs assessments and abandonment studies point to issues with health care providers, particularly in their ability to listen to the needs of the consumer and important others regarding AT-EI. Professionals need to listen to what people are telling them or, in many cases, what they are not telling them. Actions and nonverbal messages can speak very loudly. Strategies to communicate and collaborate with consumers need to be developed. Regardless of ability to communicate or the severity of the impairments the person may be experiencing, it is important to withhold judgments that may underestimate a person's potential or desire to be in control of life decisions. AT-EI service have often seen people labeled with severe or profound intellectual disabilities challenge that diagnosis after accessing a communication or access system. Likewise, a person with a severe disability has the right to supportive resources and to the same level of respect, dignity, and quality of life as any other member of society. Using the technology and adapting the environment to provide opportunities for consumers to "voice" their wishes and control their lives can be an effective strategy to collaborate. When focusing on a rights-based philosophy, recognizing the difference between physical independence (e.g., physical and/or cognitive ability to do a task by oneself) and self-care management (e.g., access to and power to manage the supportive resources to live in the community regardless of level of physical ability) is important. We all rely on supports in our lives, whether it be tools or technology to help us do a job or another person, yet when we evaluate people with disabilities, the expectation is for people to function independently [23,24]. They even receive lower scores on functional assessments if they are using a piece of technology to do an activity. By shifting the focus to management of and access to resources versus level of physical dependence or burden
Thompson, Sandra; Hiebert-Murphy, Diane; Trute, Barry
Based on the adjustment phase of the double ABC-X model of family stress (McCubbin and Patterson, 1983) this study examined the impact of parenting stress, positive appraisal of the impact of child disability on the family, and parental self-esteem on parental perceptions of family adjustment in families of children with disabilities. For mothers,…
Wolfe, Barbara; Song, Jieun; Greenberg, Jan S.; Mailick, Marsha R.
Developmental disabilities and severe mental illness are costly to the affected individual and frequently to their family as well. Little studied are their nondisabled siblings. Here we examine major life course outcomes (education, employment, and marriage) of these siblings in adulthood using data from the Wisconsin Longitudinal Study. Our sample comprises 113 individuals with developmental disabilities and 337 of their nondisabled siblings; 97 individuals with mental illness and 235 of their nondisabled siblings; and 17,126 unaffected comparison group members. We find that siblings of individuals with mental illness have less education and less employment than the unaffected comparison group, whereas those who have a sibling with developmental disabilities had normative patterns of education and employment, but less marriage and more divorce. Robustness tests incorporating genetic data do not change the conclusions based on the nongenetic analyses. PMID:24607704
Di Nuovo, Santo F; Buono, Serafino
The results of previous studies on the factorial structure of Wechsler Intelligence Scales are somewhat inconsistent across normal and pathological samples. To study specific clinical groups, such as developmentally disabled persons, it is useful to examine the factor structure in appropriate samples. A factor analysis was carried out using the principal component method and the Varimax orthogonal rotation on the Wechsler Adult Intelligence Scale (WAIS-R) in a sample of 203 developmentally disabled persons, with a mean age of 25 years 4 months. Developmental disability ranged from mild to moderate. Partially contrasting with previous studies on normal samples, results found a two-factor solution. Wechsler's traditional Verbal and Performance scales seems to be more appropriate for this sample than the alternative three-factor solution.
Stephens, Dawn L; Collins, Michael D; Dodder, Richard A
Recent legislation, especially the Americans with Disabilities Act in 1990, generated the closure of institutions for people with disabilities and inclusion into community residences and employment. It has been well documented that individuals with developmental disabilities often experience difficulties with employment including both obtaining and maintaining jobs, and many researchers have looked for ways to make employment more successful [McConkey, R. & Mezza F. (2001). Employment aspirations of people with learning disabilities attending day centers. Journal of Learning Disabilities, 5(4), 309-318; Stevens, G. (2002). Employers' perceptions and practice in the employability of disabled people: a survey of companies in south east UK. Disability and Society, 17(7), 779-796; Capella, M., Roessler, R., & Hemmeria, K. (2002). Work-related skills awareness in high-school students with disabilities. Journal of Applied Rehabilitation Counseling, 33(2), 17-23; Ingraham, K., Rahimi, M., Tsang, H., Chan, F., & Oulvey, E. (2001). Work support groups in state vocational rehabilitation agency settings: a case study. Psychiatric Rehabilitation Skills, 5(1), 6-21; Gosling, V. & Cotterill, L. (2000). An employment project as a route to social inclusion for people with learning difficulties? Disability and Society, 15(7), 1001-1018; Neitupski, J. & Hamre-Nietupski, S. (2000). A systematic process for carving supported employment positions for people with severe disabilities. Journal of Developmental and Physical Disabilities, 12(2), 103-119]. While research has accumulated that has examined predictors of successful employment, this research assessed longitudinal outcomes of employment. Data were obtained from an existing data set of all known persons receiving services from the Developmental Disabilities Division of the Oklahoma Department of Human Services (N=2760). Results indicated that as people moved to employment, scores on adaptive skills increased, that as people moved
Kartal, Mine Sonmez; Ozkan, Serife Yucesoy
The effects of class-wide self-monitoring on the on-task behaviors of preschoolers with developmental disabilities were determined. Also examined were whether the on-task behaviors of preschoolers with developmental disabilities had approximated the level of typically developing peers at the end of intervention, and classroom teachers and…
Ptomey, Lauren T.; Saunders, Richard R.; Saunders, Muriel; Washburn, Richard A.; Mayo, Matthew S.; Sullivan, Debra K.; Gibson, Cheryl A.; Goetz, Jeannine R.; Honas, Jeff J.; Willis, Erik A.; Danon, Jessica C.; Krebill, Ron; Donnelly, Joseph E.
Background: The prevalence of obesity among individuals with intellectual and developmental disabilities (IDD) is equal to or greater than the general population. Methods: Overweight/obese adults (BMI =25 kg/m2) with mild-to-moderate intellectual and developmental disabilities were randomized to an enhanced stop light diet…
Axelsson, A K; Granlund, M; Wilder, J
Participation is known to be of great importance for children's development and emotional well-being as well as for their families. In the International Classification of Functioning, Disability and Health - Children and Youth version participation is defined as a person's 'involvement in a life situation'. Engagement is closely related to involvement and can be seen as expressions of involvement or degree of involvement within a situation. This study focuses on children's engagement in family activities; one group of families with a child with profound intellectual and multiple disabilities (PIMD) and one group of families with children with typical development (TD) were compared. A descriptive study using questionnaires. Analyses were mainly performed by using Mann-Whitney U-test and Spearman's rank correlation test. Engagement in family activities differed in the two groups of children. The children with PIMD had a lower level of engagement in most family activities even though the activities that engaged the children to a higher or lesser extent were the same in both groups. Child engagement was found to correlate with family characteristics mostly in the children with TD and in the children with PIMD only negative correlations occurred. In the children with PIMD child engagement correlated with cognition in a high number of listed family activities and the children had a low engagement in routines in spite of these being frequently occurring activities. Level of engagement in family activities in the group of children with PIMD was lower compared with that in the group of children with TD. Families with a child with PIMD spend much time and effort to adapt family living patterns to the child's functioning. © 2013 John Wiley & Sons Ltd.
Evaluating the Quality of the Interaction between Persons with Profound Intellectual and Multiple Disabilities and Direct Support Staff: A Preliminary Application of Three Observation Scales from Parent-Infant Research
Hostyn, Ine; Petry, Katja; Lambrechts, Greet; Maes, Bea
Background: Affective and reciprocal interactions with others are essential for persons with profound intellectual and multiple disabilities (PIMD), but it is a challenge to assess their quality. This study aimed to investigate the usefulness of instruments from parent-infant research to evaluate these interactions. Method: Eighteen videotaped…
Nishio, Akihiro; Yamamoto, Mayumi; Ueki, Hirofumi; Watanabe, Takahiro; Matsuura, Kenshin; Tamura, Osamu; Uehara, Ryosuke; Shioiri, Toshiki
While it has been reported that the prevalence of mental illness is higher in homeless people than in the national population, few studies have investigated the prevalence of intellectual and developmental disability among the homeless. In this study, we conducted a survey to comprehensively assess these mental problems among homeless people in Nagoya, Japan. The subjects were 18 homeless men. Mental illness was diagnosed with semi-structured interviews conducted by psychiatrists. We used the Wechsler Adult Intelligence Scale III to diagnose intellectual disability. Discrepancies between Wechsler Adult Intelligence Scale III subtest scores were used as criteria for developmental disability. Eleven of the 18 participants were diagnosed with mental illness: six with mood disorder, two with psychotic disorder, and six with alcohol problems. The mean IQ of all subjects was 83.4 ± 27.4. The 95% confidence interval (CI) was 96.2-69.1. Seven participants were found to have intellectual disability. Three men showed discrepancies of more than 10 between subtest scores, and all of them were diagnosed with a mental illness. We divided the participants into four groups: those with mental illness only; those with intellectual disability only; those with both problems; and those without diagnosis. The men with intellectual disability only were significantly younger and had been homeless since a younger age than the other groups. Participants diagnosed with a mental illness had been homeless for longer than those without mental health problems. Although the sample size was limited, this study revealed the high prevalence of mental illness and intellectual disability, 61% (95%CI, 35-83%) and 39% (95%CI, 17-64%), respectively, in homeless people in Nagoya, Japan. © 2014 The Authors. Psychiatry and Clinical Neurosciences © 2014 Japanese Society of Psychiatry and Neurology.
Shobana, M; Saravanan, C
Parents' positive attitudes and psychological wellbeing play an important role in the development of the children with developmental disability. This study aimed to measure the prevalence of psychological problems among mothers of children with autism disorder, intellectual disability, and Down syndrome. The second aim was to assess the differences in mothers' attitudes and psychological problems among their children with intellectual disability, autism disorder, and Down syndrome. The third aim was to identify whether negative attitude was a predictor of psychological problems in these mothers. In this study, 112 mothers of children having mild and moderate levels of autism disorder, Down syndrome, and intellectual disability were assessed using the Parental Attitude Scale and General Health Questionnaire-28. Overall, mothers of children with intellectual disability were found to have the most negative attitude towards their child. Mothers of children with autism disorder exhibited higher scores on somatic symptoms, anxiety, and social dysfunction when compared with their counterparts with Down syndrome and intellectual disability. Negative attitude was a significant predictor of psychological problems. Parental attitudes and psychological problems would vary among mothers of children with different types of developmental disability.
Bunning, K; Smith, C; Kennedy, P; Greenham, C
Individuals with severe to profound and multiple intellectual disability (S-PMID) tend to function at the earlier stages of communication development. Variable and highly individual means of communicating may present challenges to the adults providing support in everyday life. The current study aimed to examine the communication interface between students with S-PMID and educational staff. An in-depth, observational study of dyadic interaction in a class within the secondary part of a special school was conducted. The designated educational level was Key Stage 3 under the National Curriculum of England, which is typically for children from age 11 to 14 years attending a state school. There were four student-teacher dyads in the class. The students had multiple impairments with severely limited communication skills. Video capture of dyadic interaction was conducted during five English lessons and sampled to 2.5 min per dyad per lesson. The video footage was transcribed into standard orthography, detailing the vocal and non-vocal aspects. A coding framework guided by the principles of structural-functional linguistics was used to determine the nature of dyadic interaction, comprising linguistic moves, functions and communicative modalities. The relative contributions of student and teacher to the interaction were examined. Significant differences were found between the students and educational staff on the majority of the measures. The teachers dominated the interaction, occupying significantly more turns than the students. Teacher turns contained significantly more initiations and follow-up moves than the students, who used more response moves. Teacher communication mainly served the functions of requesting and information giving. Feedback and scripted functions were also significantly greater among teacher turns, with only limited occurrence among the students. Self- or shared-expression was greatest among the students. The modalities of speech, touch, singing and
Dunn, Michael; Barrio, Brenda; Hsiao, Yun-Ju
Students with developmental disabilities often struggle with life-readiness skills (e.g., literacy skills such as reading and writing, task completion, and communication), which also help prepare students for the workplace. Assistive technology tools offer these students a means to do better in these areas. In this action-research study, we…
Kirk, Hannah E.; Gray, Kylie M.; Ellis, Kirsten; Taffe, John; Cornish, Kim M.
Background: Children with intellectual and developmental disabilities (IDD) experience heightened attention difficulties which have been linked to poorer cognitive, academic and social outcomes. Although, increasing research has focused on the potential of computerised cognitive training in reducing attention problems, limited studies have…
Mallik, Kalisankar; Yuspeh, Sheldon
A 1-year demonstration project involving 24 developmentally disabled students (9- to 20-years-old) with severe physical limitations was conducted to increase their educational and vocational possibilities by using cost-effective bio-engineering techniques to modify their physical environment and develop improved adaptive devices. Phase I of the…
Parish, Susan L.; Son, Esther; Powell, Robyn M.; Igdalsky, Leah
There is a dearth of existing research on the treatment of reproductive cancers among women with intellectual and developmental disabilities (IDD). This study analyzed the 2010 Healthcare Cost and Utilization Project Nationwide Inpatient Sample and compared the prevalence of reproductive cancer treatment hospitalization discharges among women with…
Rodriguez, Anthony M.
Students with intellectual and developmental disabilities (IDD) are routinely excluded from algebra and other high-level mathematics courses. High school students with IDD take courses in arithmetic and life skills rather than having an opportunity to learn algebra. Yet algebra skills can support the learning of money and budgeting skills. This…
Kirk, Hannah E.; Gray, Kylie; Riby, Deborah M.; Taffe, John; Cornish, Kim M.
Despite well-documented attention deficits in children with intellectual and developmental disabilities (IDD), distinctions across types of attention problems and their association with academic attainment has not been fully explored. This study examines visual attention capacities and inattentive/hyperactive behaviours in 77 children aged 4 to…
Saloviita, Timo; Pirttimaa, Raija; Kontu, Elina
Background: Children with developmental disabilities who exhibit challenging behaviour are potentially subject to the use of coercive interventions. The aim of the study was to investigate the prevalence of the use of coercive measures by authorities, according to parents' reports. Materials and Methods: A postal survey was distributed, as a total…
Fujiura, Glenn T.; Li, Henan; Magaña, Sandy
Health services and associated costs for adults with intellectual and developmental disabilities (IDD) were nationally profiled and the predictors of high expense users statistically modeled. Using linked data from the National Health Interview Survey and Medical Expenditure Panel Survey for the years 2002 through 2011, the study found a mixed…
Heinrichs, Eberhard; Rokusek, Cecilia
This educational manual, an interdisciplinary effort of professionals throughout South Dakota, is intended to serve as a practical guidebook of ideas to better serve the nutritional needs of the developmentally disabled population. The manual addresses: dietary aids for specific disorders; appropriate foods or supplements for optimal nutrition;…
Gilson, Cathy B.; Bethun, Lauren K.; Carter, Erik W.; McMillan, Elise D.
The importance of supporting families with members who have intellectual and developmental disabilities (IDD) is well established in both policy and research. Yet little is known about how familiar parents are with existing resources (e.g., programs, supports, trainings), what information they would consider most helpful, and how they would prefer…
Akdemir, Devrim; Pehlivantürk, Berna; Unal, Fatih; Ozusta, Seniz
This study examined social behaviors related to attachment in children with autistic disorder and the differences in these behaviors from those observed in developmentally disabled children. Additionally, we aimed to investigate the relationship between attachment behaviors and clinical variables, such as age, cognitive development, severity of autism, language development, and mothers' attachment styles. The study group consisted of 19 children with autistic disorder (mean age: 37.9 +/- 6.8 months) and the control group consisted of 18 developmentally disabled children without autistic disorder that were matched with respect to age, gender, and cognitive development. The Childhood Autism Rating Scale (CARS) was administered to all the children by two child psychiatrists. Mothers completed the Relationships Scale Questionnaire (RSQ). Cognitive development of the children was assessed with the Stanford-Binet intelligence scale. Attachment behaviors of the children were evaluated with a modified Strange Situation Procedure (SSP). Attachment behaviors in the children with autistic disorder and in the children with developmental disabilities were similar. In contrast to the developmentally disabled group, the children with autistic disorder stayed closer toward their mothers compared with their responses to strangers. In the autistic disorder group, attachment behaviors were not associated with age, intelligence quotient, or mothers' attachment styles; however, a significant relationship between the severity of autism and the presence of speech was observed. Parents' understanding of the attachment needs and the attachment behaviors of their autistic children in the early stages of the disorder may lead to more secure attachment relationships and improved social development.
Scherba de Valenzuela, J.; Kay-Raining Bird, E.; Parkington, K.; Mirenda, P.; Cain, K.; MacLeod, A.A.N.; Segers, P.C.J.
The purpose of this article is to describe the results of a thematic analysis of 79 semi-structured interviews collected at six research sites in four countries in relation to the inclusion and exclusion of students with developmental disabilities (DD) in and from special education and bilingual
National Institute of Dental and Craniofacial Research (NIDCR), 2009
Taking care of someone with a developmental disability requires patience and skill. As a caregiver, you know this as well as anyone does. You also know how challenging it is to help that person with dental care. It takes planning, time, and the ability to manage physical, mental, and behavioral problems. Dental care isn't always easy, but you can…
Herman, Sandra E.; Marcenko, Maureen O.
This study examined effects of resource perceptions and respite use in a theoretical model of adaptation with 72 parents of children with developmental disabilities. Amount and quality of respite services indirectly affected parental depression. Both quality and respite use were related to helpfulness of the parent's social network. The strongest…
Lang, Russell; White, Pamela J.; Machalicek, Wendy; Rispoli, Mandy; Kang, Soyeon; Aquilar, Jeannie; O'Reilly, Mark; Sigafoos, Jeff; Lancioni, Giulio; Didden, Robert
We reviewed studies involving the treatment of bruxism (i.e., teeth clenching or teeth grinding) in individuals with developmental disabilities. Systematic searches of electronic databases, journals, and reference lists identified 11 studies meeting the inclusion criteria. These studies were evaluated in terms of: (a) participants, (b) procedures…
Houwen, Suzanne; Visser, Linda; van der Putten, Annette; Vlaskamp, Carla
Background: There is an emerging body of evidence showing that motor and cognitive development are intertwined. However, little is known about (early) motor, cognitive, and language development in children with developmental disabilities. The aims of this study were to examine motor development in
John, Aesha; Bower, Kori; McCullough, Samie
Although Asian Indians constitute one of the largest immigrant groups in the USA, research examining wellbeing among Indian immigrant families caring for a child with a developmental disability is relatively scarce. In response, this study examined the stressors and perceived quality of social support among Indian immigrant families of children…
Waldman, H Barry; Perlman, Steven P
To emphasise the oral health needs of older individuals with intellectual and developmental disabilities, the impact on the individual's general health and the role that can be played by nurses. All too often an examination and consideration of the oral health condition of this patient population by nurses/physicians is cursory at best. The increasing retention of the dentition into later years of life provides both the favourable abilities for eating, speech and self esteem, but also the potential for local and general health concerns. Discursive paper. Based on the findings from dental examination of thousands of international athletes in the Special Olympic Games and clinical experiences in academic and private practice settings for care of individuals with intellectual and developmental disabilities, a discursive listing was developed for use in a preliminary examination of the oral cavity. A nurse can play a critical role in the examination, preventive services and referrals for dental care for older individuals with intellectual and developmental disabilities. The specific oral health needs of older individuals with intellectual and developmental disabilities should be an integral component of the preventive and general health care provided by nurses. © 2012 Blackwell Publishing Ltd.
Stinson, Jennifer; Christian, LeeAnn; Dotson, Lori Ann
This article discusses barriers to sexual fulfillment faced by women with developmental disabilities, including: access to gynecological healthcare, limited choices regarding reproductive issues, lack of sex education, and prevailing negative stereotypes that affect the way women are viewed by others and the way they view themselves.…
This article reports findings from an interpretevist, qualitative study exploring the connections and dynamics of friendship among three groups of secondary school-aged young adults. Each group included an individual with autism or intellectual and developmental disabilities who had extensive or pervasive support needs, and at least one high…
Vander Zanden, Jeanne A.
This introduction to basic principles of psychotropic drug use in developmentally disabled patients is intended to provide personnel working in the field with information on appropriate clinical use as well as potential risks. Presented in outline form, information is provided on five classes of psychotropic drugs: antipsychotics; antidepressants;…
Dal Pozzo, Earlene; Bernstein, Gail S.
Intended for personnel in programs serving persons with developmental disabilities, the booklet provides basic information about the major psychiatric disorders and their treatment. Five sections cover: the major disorders; medications--uses and problems; assessment; cooordination of services; and psychiatric emergencies. Major disorders such as…
van der Meer, Larah; Kagohara, Debora; Achmadi, Donna; O'Reilly, Mark F.; Lancioni, Giulio E.; Sutherland, Dean; Sigafoos, Jeff
We compared speed of acquisition and preference for using a speech-generating device (SGD) versus manual signing (MS) as augmentative and alternative communication (AAC) options. Four children with developmental disabilities (DD), aged 5-10 years, were taught to request preferred objects using an iPod[R]-based SGD and MS. Intervention was…
McHugh, Meaghan C.; Howard, Donna E.
Bullying affects approximately 40% of individuals with intellectual and developmental disabilities (IDD). Cyberbullying, a type of bullying facilitated by electronic devices, may be particularly worrisome for parents of children with IDD as constant monitoring is difficult. In this study, ten parents of Special Olympics Maryland athletes completed…
Stodden, Robert A.; Browder, Phyllis M.
The paper describes a demonstrative project designed to help 52 mentally retarded or otherwise developmentally disabled adults obtain and maintain competitive employment. The trainees were first evaluated in a situational assessment covering seven areas: (1) attendance and stamina, (2) independence, (3) productivity, (4) learning style, (5) work…
Parish, Susan L.; Rose, Roderick A.; Swaine, Jamie G.; Dababnah, Sarah; Mayra, Ellen Tracy
Understanding the financial well-being of single mothers who care for children with developmental disabilities is important to ensure that public policies can be effectively targeted to support these vulnerable families. The authors analyze data from the Survey of Income and Program Participation to describe income poverty, asset poverty, income,…
Sy, Jolene R.; Vollmer, Timothy R.
We evaluated the discrimination acquisition of individuals with developmental disabilities under immediate and delayed reinforcement. In Experiment 1, discrimination between two alternatives was examined when reinforcement was immediate or delayed by 20 s, 30 s, or 40 s. In Experiment 2, discrimination between 2 alternatives was compared across an…
Piazza, Vivian E.; Floyd, Frank J.; Mailick, Marsha R.; Greenberg, Jan S.
Among aging parents (mean age = 65, "N" = 139) of adults with developmental disabilities, we examined the effectiveness of multiple forms of coping with caregiver burden. As expected, accommodative strategies of adapting to stress (secondary engagement), used frequently in later life, buffered the impact of caregiver burden, whereas…
The attitudes and opinions of special education teachers may potentially reveal insight as to how and why teachers choose to include sex education in their curriculum for self-contained special education classrooms designed to serve students with developmental disabilities. The main objective in developing this study was to gather information…
Dressler, Paul B.; Nguyen, Teresa K.; Moody, Eric J.; Friedman, Sandra L.; Pickler, Laura
Youth with intellectual and developmental disabilities (IDD) often experience difficulties with successful transition from pediatric to adult healthcare. A consultative Transition Clinic for youth with IDD was piloted as a quality improvement project, and assessed the engagement of primary care providers (PCPs) for transition planning after…
Kastner, Theodore; And Others
A public health approach was used to eliminate pinworm from a system of community residential settings for individuals with developmental disabilities. The approach involved screening and treatment of staff members and clients living and working in close proximity to index cases, and prophylactically treating many clients and staff based on…
DeLeon, Iser G.; Kahng, SungWoo; Rodriguez-Catter, Vanessa; Sveinsdottir, Ingibjorg; Sadler, Christine
An adolescent with developmental disabilities who used a wheelchair was anecdotally observed to display little aggressive behavior when being pushed, but higher rates when movement was terminated. A functional analysis confirmed the elevated aggression and the child was taught to request movement through appropriate means. Aggression decreased…
Lister, Suzanne; Tanguay, Denise; Snow, Stephen; D'Amico, Miranda
The Centre for the Arts in Human Development in Montreal has provided art, drama, music, and dance/movement therapies to adults with developmental disabilities for over 10 years with the goals of developing and enhancing self-esteem, social skills, and communication abilities. This report describes the development and purpose of the center,…
Krikeli, Vasiliki; Michailidis, Anastasios; Klavdianou, Niovi-Dionysia
This paper investigates the effect of music on the communication improvement of children with developmental disabilities. Forty subjects (18 boys and 22 girls) 7-12 years old, were divided into an experimental group (n = 20) which participated in music therapy activities and a control group (n = 20) which was discussing and watching television,…
Deagle, Elena; D'Amico, Miranda
The current study is a qualitative analysis of the results of a literacy skills intervention with a group comprising of three individuals with Down syndrome and three individuals with other developmental disabilities. The intervention was developed to address the concern that individuals in this population are often only exposed to functional…
Radtke, Frederick A.; Radtke, Jean C.
The paper deals primarily with the components of culture that preclude rejection of developmentally disabled persons with a view toward minifying these attitudes in the future. Reviewed are such components of culture as democratic ideals, religious factors, economic factors, and educational practices which foster negative attitudes toward the…
Moor, J.M.H. de; Didden, H.C.M.; Korzilius, H.P.L.M.
BACKGROUND: Young children with developmental disabilities are at risk of food refusal. In case of severe food refusal, children are being fed by nasal or gastrostomy tube. Behavioural treatment may be effective in establishing oral food intake. METHODS: A behavioural treatment package was
Moor, J.M.H. de; Didden, H.C.M.; Korzilius, H.P.L.M.
Background Young children with developmental disabilities are at risk of food refusal. In case of severe food refusal, children are being fed by nasal or gastrostomy tube. Behavioural treatment may be effective in establishing oral food intake. Methods A behavioural treatment package was
Moor, J.M.H. de; Didden, R.; Korzilius, H.P.L.M.
BACKGROUND: Young children with developmental disabilities are at risk of food refusal. In case of severe food refusal, children are being fed by nasal or gastrostomy tube. Behavioural treatment may be effective in establishing oral food intake. METHODS: A behavioural treatment package was
Tan, Xi; Marshall, Vincent D.; Balkrishnan, Rajesh; Patel, Isha; Chang, Jongwha; Erickson, Steven R.
Psychotropic medications are a common treatment for mental illness in people with developmental disabilities. Medication adherence is a critical determinant of the effectiveness of psychotropic drugs, but psychotropic medication adherence research specific to this population remains limited. This retrospective study analyzed Marketscan®…
Lindstrom, Lauren; Hirano, Kara A.; McCarthy, Colleen; Alverson, Charlotte Y.
This study examined career development and early employment experiences for four young adults with intellectual and developmental disabilities. Researchers used a multiple-method, multiple case-study longitudinal design to explore career development within the context of family systems, high school and transition programs, adult services, and…
Sinclair, James; Unruh, Deanne; Lindstrom, Lauren; Scanlon, David
Individuals with intellectual and developmental disabilities (ID/DD) experience multiple barriers that may prevent them from understanding and exploring their own sexuality. These barriers prevent them from achieving the same autonomy and quality of life as their peers. This research synthesis focuses on 13 articles published between 2000 and 2013…
This manuscript provides a review of housing and independent living options for individuals with intellectual and developmental disabilities (I/DD). While there has certainly been an increased emphasis on community integration and inclusion for people with I/DD, barriers to delivering housing supports and services in natural, integrated settings…
Gilson, Carly B.; Carter, Erik W.; Bumble, Jennifer L.; McMillan, Elise D.
Families are essential partners in efforts to elevate the employment outcomes of adults with intellectual and developmental disabilities (IDD). We examined the employment-related expectations, preferences, and concerns of 673 parents and other family members of adults with IDD. Participants prioritized paid integrated employment over sheltered…
MSc Stijn Deckers; Jan J.W. van der Burg; Jan M.H. de Moor
Total and chronic food refusal (i.e., the refusal of all types of food during a prolonged period) in young children with developmental disabilities can be treated effectively using a combination of environmental interventions. However, no guidelines for the selection of food items to offer the child
Crnic, Keith A.; Neece, Cameron L.; McIntyre, Laura Lee; Blacher, Jan; Baker, Bruce L.
Initial intervention processes for children with intellectual disabilities (IDs) largely focused on direct efforts to impact core cognitive and academic deficits associated with the diagnosis. Recent research on risk processes in families of children with ID, however, has influenced new developmental system approaches to early intervention. Recent…
Amado, Angela Novak; Stancliffe, Roger J.; McCarron, Mary; McCallion, Philip
As more individuals with intellectual/developmental disabilities are physically included in community life, in schools, neighborhoods, jobs, recreation, and congregations, the challenge of going beyond physical inclusion to true social inclusion becomes more apparent. This article summarizes the status of the research about community participation…
Van Laarhoven, Toni; Winiarski, Lauren; Blood, Erika; Chan, Jeffrey M.
A modified pre/posttest control group design was used to measure the effectiveness of video modeling on the maintenance of vocational tasks for six students with autism spectrum disorder and/or developmental disabilities. Each student was assigned two vocational tasks at their employment settings and their independence with each task was measured…
McDonald, Katherine Elizabeth
Respect is central to ethical guidelines for research. The scientific community has long debated, and at times disagreed on, how to demonstrate respect in research with adults with intellectual and developmental disabilities. To illuminate the voices of those most affected, the author studies the views of adults with intellectual and developmental…
Matson, Johnny L.; Mahan, Sara; LoVullo, Santino V.
Great strides have been made in the development of skills and procedures to aid children with developmental disabilities to establish maximum independence and quality of life. Paramount among the treatment methods that have empirical support are treatments based on applied behavior analysis. These methods are often very labor intensive. Thus,…
Jacob, Udeme Samuel; Olisaemeka, Angela Nneka; Edozie, Isioma Sitamalife
The paper attempts to discuss the place of intervention in the developmental and communication disorders of children with intellectual disability for the purpose of providing effective inclusion programme. The definition of early intervention was stated, areas affected by children communication disorder such as language comprehension, fluency,…
Problem Statement: Because communication skills, particularly pragmatic skills, are fundamental for living an independent life in society, these skills are vital to the quality of life of individuals with developmental disabilities (DD) and their families. Studies of the pragmatic skills of individuals with DD can provide important insights into…
Rurangirwa, Jacqueline; Braun, Kim Van Naarden; Schendel, Diana; Yeargin-Allsopp, Marshalyn
Objective: Measure select Healthy People 2010 Leading Health Indicators in young adults with and without a history of developmental disabilities (DD) using a population-based cohort. Methods: Young adults were interviewed to assess the prevalence of seven Leading Health Indicators: physical activity, overweight and obesity, tobacco use, substance…
Matson, Johnny L.; LoVullo, Santino V.
Children and adults with developmental disabilities are more likely to evince encopresis, soiling and constipation than the general population. This set of related behaviors can produce a great deal of stress and can be a major restriction in independent living. This paper provides a review of the current state of knowledge on the prevalence,…
Rodriguez, Anthony M.
In my experiences, students with Developmental Disability (DD) are routinely excluded from Algebra and other high-level mathematics courses. People with DD do not have the opportunity to learn Algebra, which may support the understanding and provide purpose for learning money and budgeting skills that, perhaps, could help them avoid financial…
Lucardie, Richard; Sobsey, Dick
Over the past decade, there has been increased interest in crimes against people with developmental disabilities (PWDD). While national and international information has been available on homicides of people in general, little attention has been given to homicides of PWDD specifically. This paper provides a preliminary description of homicides as…
Attention skills are strongly associated with academic attainment, social inclusion, peer relationships and mental health. Attention difficulties are commonly reported in children with intellectual and developmental disabilities (IDD), consequently increasing the already heightened risk of cognitive difficulties, behavioural problems and learning impairments. Despite acknowledgement of the core deficits in attention that characterise children with IDD, limited research has attempted to stre...
Hilton, Alan; Gerlach, Kent
Presents a position statement of the Board of Directors of the Division on Mental Retardation and Developmental Disabilities that reviews the employment, preparation, and management of paraeducators. The statement addresses role definition, employment and management, legal and ethical responsibilities, job descriptions, paraeducator training, and…
Lin, E.; Balogh, R.; Cobigo, V.; Ouellette-Kuntz, H.; Wilton, A. S.; Lunsky, Y.
Background: Individuals with intellectual and developmental disabilities (IDD) experience high rates of physical and mental health problems; yet their health care is often inadequate. Information about their characteristics and health services needs is critical for planning efficient and equitable services. A logical source of such information is…
Mazzucchelli, Trevor G.; Sanders, Matthew R.
Children with developmental disabilities are at substantially greater risk of developing emotional and behavioural problems compared to their typically developing peers. While the quality of parenting that children receive has a major effect on their development, empirically supported parenting programs reach relatively few parents. A recent trend…
Barton-Hulsey, Andrea; Sevcik, Rose A; Romski, MaryAnn
A number of intrinsic factors, including expressive speech skills, have been suggested to place children with developmental disabilities at risk for limited development of reading skills. This study examines the relationship between these factors, speech ability, and children's phonological awareness skills. A nonexperimental study design was used to examine the relationship between intrinsic skills of speech, language, print, and letter-sound knowledge to phonological awareness in 42 children with developmental disabilities between the ages of 48 and 69 months. Hierarchical multiple regression was done to determine if speech ability accounted for a unique amount of variance in phonological awareness skill beyond what would be expected by developmental skills inclusive of receptive language and print and letter-sound knowledge. A range of skill in all areas of direct assessment was found. Children with limited speech were found to have emerging skills in print knowledge, letter-sound knowledge, and phonological awareness. Speech ability did not predict a significant amount of variance in phonological awareness beyond what would be expected by developmental skills of receptive language and print and letter-sound knowledge. Children with limited speech ability were found to have receptive language and letter-sound knowledge that supported the development of phonological awareness skills. This study provides implications for practitioners and researchers concerning the factors related to early reading development in children with limited speech ability and developmental disabilities.
Bennett, Elizabeth Anne; Kolko, Rachel; Chia, Lichun; Elliott, Jennifer Padden; Kalarchian, Melissa Ann
Childhood obesity is a serious health issue, associated with medical comorbidity and psychosocial impairment that can persist into adulthood. In the United States, youth with intellectual and developmental disabilities are more likely to be obese than youth without disabilities. A large body of evidence supports the efficacy of family-based treatment of childhood obesity, including diet, physical activity, and behavior modification, but few interventions have been developed and evaluated specifically for this population. We highlight studies on treatment of obesity among youth with intellectual and developmental disabilities, including both residential/educational settings as well as outpatient/hospital settings. All interventions were delivered in-person, and further development of promising approaches and delivery via telenursing may increase access by youth and families. Nursing scientists can assume an important role in overcoming barriers to care for this vulnerable and underserved population. PMID:28349744
Hirano, Keiko; Aiba, Hideo; Oguro, Katsuhiko
The aim of this study was to investigate the relationship between developmental disabilities and brain perfusion patterns. We performed technetium-99m-ethylcysteinate dimer ( 99m Tc-ECD) single photon emission computed tomography (SPECT) in 30 children with neurological disorders using the Patlak plot method. In children without developmental disabilities, the distribution of regional cortical perfusion evolved in relation to brain maturation. At one month of age, there was a predominant uptake in the perirolandic cortex. Radionuclide uptake in both the parietal and occipital cortices became evident by three months. Uptake in the temporal and frontal cortex increased by 6 and 11 months, respectively. Brain perfusion showed a pattern similar to that of adults by two years of age at the latest. In children with developmental disabilities, developmental changes of brain perfusion were delayed compared to normally developing children. Brain SPECT is a useful tool to assess the brain maturation in children with developmental disabilities. (author)
Juneja, Monica; Jain, Rahul; Singhal, Swati; Mishra, Devendra
To identify the problems faced by parents of children with developmental disabilities in availing rehabilitative services and to find their satisfaction level. This study was carried out at a Child Development Clinic (CDC) located in Northern India. Children with developmental disabilities, who were availing services at CDC for at least last 3 mo and had at least 3 follow-up visits, were enrolled. A questionnaire pertaining to the socio-demographic profile, problems faced in availing services and satisfaction level was filled by the parents of the enrolled children. During the study period, 161 parents filled the questionnaire. 77.6% had some problems in getting the services, the major being difficulty in commuting (50%) and financial constraint (21.7%). More than 80% parents use public transport to reach CDC with 19% travelling more than 50 Km. 29.8% had difficulty in bringing their child to the clinic, either due to severe behavioral problems or physical disability. However, majority of the families were well satisfied with the services as 95% of them graded their satisfaction level at 3 or more on the scale of 0-5. Parents of children with developmental disabilities face many problems in getting rehabilitative services. They travel long distances, face hardships in carrying their child, and lose their day's earnings, apart from spending time and money for their child's therapy. However, most of the parents are well satisfied with the services.
Krysta, Krzysztof; Krzystanek, Marek; Cubała, Wiesław J; Wiglusz, Mariusz S; Jakuszkowiak-Wojten, Katarzyna; Gałuszko-Węgielnik, Maria; Czarnowska-Cubała, Monika; Szarmach, Joanna; Włodarczyk, Adam; Janas-Kozik, Małgorzata
Treatment and rehabilitation of people with intellectual and developmental disabilities is a multidisciplinary challenge, which require implementing new attitudes. The use of modern technology solutions like telepsychiatry or virtual reality may be a valuable addition to the traditional methods. The objective of this review was to explore the usability of new technological solutions in this special population of patients. The search in the PubMed was conducted using the following terms: (intellectual disability (Title/Abstract) OR developmental disability OR learning disorder (Title/Abstract)) AND virtual reality (Title/Abstract) OR telepsychiatry OR telemedicine OR e-mental health AND English (lang) AND (1995/01/01(PDAT): 2017/07/31(PDAT)). Telepsychiatry may be a useful tool in situations, when the direct access to professional assistance is limited, in solving particular problems like e.g. managing challenging behavior, also to support patients' parents and for diagnostic and educational purposes. Virtual reality can be a safe and effective method of improving different skills, developing physical fitness, and enriching the ways of spending the leisure time. Using modern technology is a relatively new and promising field in which new ideas may develop to support the already existing services for patients with intellectual and developmental disabilities.
Exploring the life stories of leaders in the self-advocacy movement can expand our knowledge about leadership development of individuals with developmental disabilities. A better understanding of this process may assist with supporting the movement and leadership development of youth with disabilities. In-depth qualitative interviews were conducted with 13 leaders in the self-advocacy movement within the USA in order to explore their life stories. Purposeful sampling contributed to a diverse sample of leaders. A grounded theory approach led to the identification of major themes and factors associated with their leadership development. Four major themes emerged: (1) disability oppression and resistance; (2) environmental supports and relationships; (3) leadership skills; and (4) advanced leadership opportunities. Findings have conceptual and practical relevance for future interventions and research. © 2010 The Author. Journal of Intellectual Disability Research © 2010 Blackwell Publishing Ltd.
Tomlinson, M.; Yasamy, M. T.; Emerson, E.; Officer, A.; Richler, D.; Saxena, S.
Objectives: The prevalence of intellectual disabilities (ID) has been estimated at 10.4/1000 worldwide with higher rates among children and adolescents in lower income countries. The objective of this paper is to address research priorities for development disabilities, notably ID and autism, at the global level and to propose the more rational…
Medeiros, Kristen; Kozlowski, Alison M.; Beighley, Jennifer S.; Rojahn, Johannes; Matson, Johnny L.
Previous research has found that individuals with intellectual disability and/or autism spectrum disorder (ASD), and those with greater symptom severity within these diagnoses, show higher rates of aggressive/destructive behavior, stereotypic behavior, and self-injurious behavior. In this exploratory cross-sectional study, toddlers at-risk for a…
Magda Solange Vanzo Pestun
Full Text Available Nonverbal learning disabilities (NVLD, a clinical condition still little reported in Brazil, are characterized by damages in the visual spatial domains, visual motor integration, fine motor skills, math skills and social and emotional difficulties. Developmental Dyscalculia (DD is a neurodevelopmental disorder that affects basic arithmetic skills acquisition, including storage and recovery of arithmetic facts, calculation fluency and precision and number sense domain. Although both are persistent Math learning disorder/disability, they cause different damages. The objective of this case report is to describe, compare and analyze the neuropsychological profile of two Brazilian children with similar complaints but distinct diagnosis.
An, Jihoun; Hodge, Samuel R
The purpose of this phenomenological inquiry was to explore the experiences and meaning of parental involvement in physical education from the perspectives of the parents of students with developmental disabilities. The stories of four mothers of elementary aged children (3 boys, 1 girl), two mothers and one couple (mother and father) of secondary-aged youth (1 girl, 2 boys) with developmental disabilities, were gathered by using interviews, photographs, school documents, and the researcher's journal. Bronfenbrenner's (2005) ecological system theory provided a conceptual framework to interpret the findings of this inquiry. Three themes emerged from thematic analysis: being an advocate for my child, understanding the big picture, and collaborative partnerships undeveloped in GPE. The findings lend additional support to the need for establishing collaborative partnerships in physical education between home and school environments (An & Goodwin, 2007; Tekin, 2011).
Sonik, Rajan A; Parish, Susan L; Rosenthal, Eliana S
In growing numbers, people with intellectual and developmental disabilities are outliving their parents, or at least their parents' ability to care for them. Consequently, adult siblings without intellectual and developmental disabilities are increasingly taking on primary caregiving responsibilities. However, adult siblings have received little study generally, and sibling caregivers have received even less. We used nationally representative data from the Survey of Income and Program Participation (SIPP) to describe the social characteristics and material hardship levels of sibling caregivers, in comparison to the general working age adult population. This study finds moderate material hardship to be pervasive among sibling caregivers, though extreme levels of hardship are possibly being abated somewhat through public benefit programs. Implications for greater service needs are discussed.
Zachik, Albert A; Naylor, Michael W; Klaehn, Robert L
Child and adolescent psychiatrists are in a unique position to provide administrative and clinical leadership to public agencies. In mental health, services for children and adolescents in early childhood, school, child welfare, and juvenile justice settings, transition-aged youth programs, workforce development, family and youth leadership programs, and use of Medicaid waivers for home- and community-based service system development are described. In child welfare, collaboration between an academic child psychiatry department and a state child welfare department is described. In developmental disabilities, the role of the child and adolescent psychiatrist administrator is described providing administrative leadership, clinical consultation, quality review, and oversight of health and behavioral health plans for persons with developmental disabilities.
Stephenson, Jennifer; Limbrick, Lisa
This article presents a review of the research on the use of mobile touch-screen devices such as PDAs, iPod Touches, iPads and smart phones by people with developmental disabilities. Most of the research has been on very basic use of the devices as speech generating devices, as a means of providing video, pictorial and/or audio self-prompting and…
One of the most important life decisions one takes as an adolescent is the choice of education and future career.This decision becomes even more difficult when the possibilities of further training are limited as they are in the case of the adolescents finishing school programmes which had been adapted to lower educational standards i.e. for persons with mild intellectual and developmental disabilities.We researched career counselling services in elementary and middle schools and found that...
Martin A. Volker; Elissa H. Dua; Christopher Lopata; Marcus L. Thomeer; Jennifer A. Toomey; Audrey M. Smerbeck; Jonathan D. Rodgers; Joshua R. Popkin; Andrew T. Nelson; Gloria K. Lee
The Gilliam Autism Rating Scale-Second Edition (GARS-2) is a widely used screening instrument that assists in the identification and diagnosis of autism. The purpose of this study was to examine the factor structure, internal consistency, and screening sensitivity of the GARS-2 using ratings from special education teaching staff for a sample of 240 individuals with autism or other significant developmental disabilities. Exploratory factor analysis yielded a correlated three-factor solution si...
Kao, Ying-Chia; Kramer, Jessica M; Liljenquist, Kendra; Tian, Feng; Coster, Wendy J
OBJECTIVE. We compared the functional performance of children with autism spectrum disorders (ASD), intellectual and developmental disabilities (IDD), and without disabilities using the revised Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) Social/Cognitive, Daily Activities, and Responsibility domains. METHOD. A nationally representative sample of parents of children ages 0-21 without disabilities (n = 2,205), with ASD (n = 108), or with IDD (n = 150) completed an online survey. We obtained predicted PEDI-CAT scaled scores for three reference ages (5, 10, 15) from a modified analysis of covariance model and compared each group's scores using contrasts of the regression parameters. RESULTS. We found no significant differences between the ASD and IDD groups. The group with ASD demonstrated significantly lower performance than the group without disabilities across the three domains at ages 10 and 15. CONCLUSION. Scores on the PEDI-CAT differentiated the group with ASD from the group without disabilities. Children with ASD and IDD did not demonstrate different performance profiles. Copyright © 2012 by the American Occupational Therapy Association, Inc.
MacDonald, Megan; Ross, Samantha; McIntyre, Laura Lee; Tepfer, Amanda
Young children with developmental disabilities experience known deficits in salient child behaviors, such as social behaviors, communication, and aspects of daily living, behaviors that generally improve with chronological age. The purpose of this study was to examine the mediating effects of motor skills on relations of age and salient child behaviors in a group of young children with developmental disabilities, thus tapping into the potential influences of motor skills in the development of salient child behaviors. One hundred thirteen young children with developmental disabilities participated in this study. Independent mediation analysis, with gender as a moderator between the mediating and outcome variable, indicated that motor skills meditated relations between age and socialization, communication, and daily living skills in young male children with developmental disabilities, but not female participants. Findings suggest motor skill content needs to be considered in combination with other child behaviors commonly focused on in early intervention.
Holwerda, Anja; Brouwer, Sandra; de Boer, Michiel R; Groothoff, Johan W; van der Klink, Jac J L
Expectations strongly influence future employment outcomes and social networks seem to mediate employment success of young adults with intellectual and developmental disabilities. The aim of this study is to examine the expectations of young adults with intellectual and developmental disabilities from special needs education, their parents and their school teachers regarding future work and the extent to which these expectations predict work outcome. Data on 341 young adults with intellectual or developmental disabilities, coming from special needs education, aged 17-20 years, and with an ability to work according to the Social Security Institute were examined. The school teacher's expectation was the only perspective that significantly predicted entering competitive employment, with a complementary effect of the expectation of parents and a small additional effect of the expectation of the young adult. Expectations of school teachers and parents are valuable in predicting work outcome. Therefore, it is important for professionals working with the young adult in the transition from school to work to incorporate the knowledge of school teachers and parents regarding the abilities of the young adult to enter competitive employment as a valuable source of information.
Gallagher, Stephen; Whiteley, Jenny
The present study tested whether parents caring for children with developmental disabilities would have higher blood pressure compared to parents of typically developing children (controls). It also examined the psychosocial factors underlying this observation. Thirty-five parents of children with developmental disability and thirty controls completed standard measures of perceived stress, child challenging behaviours and social support and wore an ambulatory blood pressure (BP) monitor throughout the day, for one day. Relative to controls, parents caring for children with developmental disabilities reported poorer psychosocial functioning and had a higher mean systolic BP. Of the psychosocial predictors, only social support was found to be predictive. Moreover, variations in social support accounted for some of the between group differences with the β for parental group attenuated from .42 to .34 in regression analyses. It appears that social support may influence blood pressure responses in parental caregivers. Finally, our findings underscore the importance of providing psychosocial interventions to improve the health of family caregivers. Copyright © 2012 Elsevier Ltd. All rights reserved.
The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was the first legally binding instrument explicitly focused on how human rights apply to people with disability. Amongst their obligations, consistent with the social model of disability, the Convention requires signatory nations to recognise that “…persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and mandates signatory nations to develop “…appropriate measures...
Hsieh, Hsieh-Chun; Lin, Hung-Yu; Chiu, Wen-Hsin; Meng, Ling Fu; Liu, Chun Kai
This study used a novel device to make video games accessible to children with developmental disabilities (DD) by modifying the training software and interfaces to enhance motor training. In the pretest-posttest design, 20 children (13 boys, 7 girls; mean age=5.2 yr) with DD received adaptive upper-limb motor rehabilitation consisting of fifteen 30-min individual sessions 3 times per week for 5 wk. Improvement in Beery-Buktenica Developmental Test of Visual Motor Integration and Peabody Developmental Motor Scales, Second Edition, scores for children with DD indicated significant differences between pretest and posttest. The rehabilitation device modified for the needs of children with DD is effective in improving visual-motor performance of children with DD. Copyright © 2015 by the American Occupational Therapy Association, Inc.
Full Text Available OBJECTIVES: Clinical use of microarray-based techniques for the analysis of many developmental disorders has emerged during the last decade. Thus, chromosomal microarray has been positioned as a first-tier test. This study reports the first experience in a Chilean cohort. METHODS: Chilean patients with developmental disabilities and congenital anomalies were studied with a high-density microarray (CytoScan(tm HD Array, Affymetrix, Inc., Santa Clara, CA, USA. Patients had previous cytogenetic studies with either a normal result or a poorly characterized anomaly. RESULTS: This study tested 40 patients selected by two or more criteria, including: major congenital anomalies, facial dysmorphism, developmental delay, and intellectual disability. Copy number variants (CNVs were found in 72.5% of patients, while a pathogenic CNV was found in 25% of patients and a CNV of uncertain clinical significance was found in 2.5% of patients. CONCLUSION: Chromosomal microarray analysis is a useful and powerful tool for diagnosis of developmental diseases, by allowing accurate diagnosis, improving the diagnosis rate, and discovering new etiologies. The higher cost is a limitation for widespread use in this setting.
Tachibana, Yoshiyuki; Takehara, Kenji; Kakee, Naoko; Mikami, Masashi; Inoue, Eisuke; Mori, Rintaro; Ota, Erika; Koizumi, Tomoe; Okuyama, Makiko; Kubo, Takahiko
Previous work has suggested that maternal developmental disorder traits related to autism spectrum disorder (ASD) and attention-deficit hyperactivity disorder (ADHD) are significantly associated with child maltreatment. However, there may be other important maternal characteristics that contribute to child maltreatment. We hypothesized that maternal impulse control disability may also affect child maltreatment in addition to maternal developmental disorder traits. We aimed to test this hypothesis via a cohort study performed in Tokyo (n = 1,260). Linear regression analyses using the Behavioural Inhibition/Behavioural Activation Scales, the self-administered short version of the Pervasive Developmental Disorders Autism Society Japan Rating Scale, the short form of the Adult Attention-Deficit Hyperactivity Disorder Self-Report Scale, and the Child Maltreatment Scale, revealed that excessive inhibition of behaviour and affect, which is impulse control disability, is significantly associated with child maltreatment (b = 0.031, p = 0.018) in addition to maternal developmental disorder traits (ASD: b = 0.052, p = 0.004; ADHD: b = 0.178, p child maltreatment, while ADHD was associated (AOR = 1.034, p = 0.022) with severe child maltreatment. These maternal characteristics may inform the best means for prevention and management of child maltreatment cases.
Pinquart, Martin; Pfeiffer, Jens P.
Chronic illnesses and disabilities may impair the attainment of age-typical developmental tasks, such as forming relationships with peers and gaining autonomy. Based on a systematic search in electronic databases and cross-referencing, 447 quantitative empirical studies were included which compared the attainment of developmental tasks of…
Sexual violence (SV) negatively impacts women with disabilities disproportionately, especially those with intellectual and/or developmental disabilities (IDD). The 2 populations are included in this article as there are overlaps in diagnostic criteria as well as similar risk factors associated with the experience of SV. Despite lacking…
Trute, Barry; Hiebert-Murphy, Diane; Levine, Kathryn
Background: Parental positive and negative appraisals of the family impact of childhood disability are tested as early predictors of parental self-esteem and overall family adjustment in households with young children with intellectual and developmental disabilities. Method: Within 103 Canadian families, 103 mothers and 55 fathers independently…
Dukmak, Samir J.; Aburezeq, Ibtehal M.
A significant number of individuals all over the world experience various types of developmental disabilities. Families of these individuals are likely to be impacted by these disabilities in different ways. This research examines the UAE parents' adaptation and stress to the developmental disabilities that their children have as well as examines…
Alwinesh, Merlin Thanka Jemi; Joseph, Rachel Beulah Jansirani; Daniel, Anna; Abel, Julie Sandra; Shankar, Satya Raj; Mammen, Priya; Russell, Sushila; Russell, Paul Swamidhas Sudhakar
There is no agreement about the measure to quantify the intellectual/developmental level in children with the dual disability of intellectual disability and autism. Therefore, we studied the psychometric properties and utility of Psycho-Educational Profile-Revised (PEP-R) as a developmental test in this population. We identified 116 children with dual disability from the day care and inpatient database of a specialised Autism Clinic. Scale and domain level scores of PEP-R were collected and analyzed. We examined the internal consistency, domain-total correlation of PEP-R and concurrent validity of PEP-R against Gesell's Developmental Schedule, inter-rater and test-retest reliability and utility of PEP-R among children with dual disability in different ages, functional level and severity of autism. Besides the adequate face and content validity, PEP-R demonstrates a good internal consistency (Cronbach's α ranging from 0.91 to 0.93) and domain-total correlation (ranging from 0.75 to 0.90). The inter-rater reliability (intraclass correlation coefficient, ICC = 0.96) and test-retest reliability (ICC = 0.87) for PEP-R is good. There is moderate-to-high concurrent validity with GDS (r ranging from 0.61 to 0.82; all Ps = 0.001). The utility of PEP-R as a developmental measure was good with infants, toddlers, pre-school and primary school children. The ability of PEP-R to measure the developmental age was good, irrespective of the severity of autism but was better with high-functioning children. The PEP-R as an intellectual/developmental test has strong psychometric properties in children with dual disability. It could be used in children with different age groups and severity of autism. PEP-R should be used with caution as a developmental test in children with dual disability who are low functioning.
Full Text Available Bridget Kiely, Sujit Vettam, Andrew Adesman Division of Developmental and Behavioral Pediatrics, Department of Pediatrics, Steven and Alexandra Cohen Children’s Medical Center of New York, New Hyde Park, NY, USA Purpose: Several professional societies recommend that genetic testing be routinely included in the etiologic workup of children with developmental disabilities. The aim of this study was to determine the rate at which genetic testing is performed in this population, based on data from a nationally representative survey.Methods: Data were analyzed from the Survey of Pathways to Diagnosis and Services, a telephone-based survey of parents and guardians of US school-age children with current or past developmental conditions. This study included 3,371 respondents who indicated that their child had an autism spectrum disorder (ASD, intellectual disability (ID, and/or developmental delay (DD at the time of survey administration. History of genetic testing was assessed based on report by the parent/s. Children were divided into the following five mutually exclusive condition groups: ASD with ID; ASD with DD, without ID; ASD only, without ID or DD; ID without ASD; and DD only, without ID or ASD. Logistic regression was used to assess the demographic correlates of genetic testing, to compare the rates of genetic testing across groups, and to examine associations between genetic testing and use of other health-care services.Results: Overall, 32% of this sample had a history of genetic testing, including 34% of all children with ASD and 43% of those with ID. After adjusting for demographics, children with ASD + ID were more than seven times as likely as those with ASD only, and more than twice as likely as those who had ID without ASD, to have undergone genetic testing. Prior specialist care (developmental pediatrician or neurologist and access to all needed providers within the previous year were associated with higher odds of genetic testing
Mazzucchelli, Trevor G; Sanders, Matthew R
Children with developmental disabilities are at substantially greater risk of developing emotional and behavioural problems compared to their typically developing peers. While the quality of parenting that children receive has a major effect on their development, empirically supported parenting programs reach relatively few parents. A recent trend in parenting intervention research has been the adoption of a public health approach to improve the quality of parenting at a population level. This has involved delivering parenting interventions on a large scale and in a cost-effective manner. Such trials have been demonstrated to reduce negative parenting practices, prevent child maltreatment, and reduce child behavioural and emotional problems. However, these trials have been restricted to parents of children who are developing typically. This paper explores the rational for the extension of a population health approach to parenting interventions for children with developmental disabilities. It is argued that a population-based implementation and evaluation trial of an empirically supported system of interventions is needed to determine whether this approach is viable and can have a positive impact on parents and their children in a disability context. The Stepping Stones Triple P--Positive Parenting Program is presented as an example of a parenting intervention that satisfies the requirements for such a trial. Tasks and challenges of such a trial are discussed. Copyright © 2011 Elsevier Ltd. All rights reserved.
Discussing the question, which elements on the path are to be considered profound. While a general view is that the most subtle practises are also the most profound, 'Jig-rten-mgon-po maintains that the most fundamental one's are to be considered the most profound....
Chou, Li-Der; Lai, Nien-Hwa; Chen, Yen-Wen; Chang, Yao-Jen; Yang, Jyun-Yan; Huang, Lien-Fu; Chiang, Wen-Ling; Chiu, Hung-Yi; Shin, Haw-Yun
As Internet technologies evolve, their applications have changed various aspects of human life. Here, we attempt to examine their potential impact on services for families with developmentally delayed children. Our research is thus designed to utilize wireless mobile communication technologies, location services, and search technology in an effort to match families of specific needs with potential care providers. Based on the investigation conducted by our counselors, this paper describes a platform for smooth communication between professional communities and families with children with developmental disabilities (CDD). This research also looks into the impact of management of mobile social network services and training on the operation of these services. Interaction opportunities, care, and support to families with CDD are introduced.
... blindness. They may affect mental ability, such as learning disorders. Or the problem can be both physical and mental, such as Down syndrome. The problems are usually life-long, and can affect everyday living. There are ...
Susan D. Moisey
Full Text Available Adults with developmental disabilities in Northeast Alberta, Canada, face numerous barriers to learning opportunities within their immediate and extended communities. The disability itself, as well as geographic distance and the circumstances in which individuals live, may hamper their access to information, interfere with their ability to communicate, and reduce their ability to achieve the quality of life they desire. There are few opportunities for individuals to meet, to get to know each other, and to share their experiences and learn from each other. Family members and guardians face similar barriers, such as lack of access to information, few networking opportunities, and limited means of providing input into decisions about service needs and policy making.
Burke, Meghan M; Lee, Chung Eun; Arnold, Catherine K; Owen, Aleksa
Adult siblings of individuals with intellectual and developmental disabilities (IDD) report struggling to navigate the adult disability service delivery system and collaborate with professionals. To date, though, it is unclear how professionals encourage sibling involvement and, accordingly, the facilitators and challenges in working with siblings. For this study, 290 professionals participated in a national web-based survey; participants answered three open-ended questions about ways to involve siblings, positive experiences with siblings, and challenges in working with siblings. Professionals reported person-level and systems-level supports to encourage sibling involvement. Also, professionals reported enjoying working with cohesive families of individuals with IDD and witnessing the benefits that siblings bring to their brothers and sisters with IDD. Challenges in working with siblings included: lack of sibling involvement, systemic barriers, and caregiving burden. Implications for future research and practice are discussed.
Smith, Ashlyn L.; Romski, MaryAnn; Sevcik, Rose A.; Adamson, Lauren B.; Barker, R. Michael
This study extended research on the Down syndrome advantage by examining differences in parent stress and parent perceptions of language development between 29 parents of young children with Down syndrome and 82 parents of children with other developmental disabilities. Parents of children with Down syndrome reported lower levels of total stress, child-related stress, and stress surrounding the parent-child interaction. Parents of children in both groups reported that they felt successful in their ability to impact their children’s communication development but did differ on perceptions of difficulty such that parents of children with Down syndrome perceived their children’s communication difficulties as less severe despite the children exhibiting similar language skills. Finally, after accounting for potential explanatory confounding variables, child diagnosis remained a significant predictor of parent stress and perceptions of language development. Results highlight the importance of considering etiology when assisting families raising a child with a disability. PMID:24753637
Harrold, M; Lutzker, J R; Campbell, R V; Touchette, P E
Child Management Training (CMT) involves compliance training with a focus on consistent use of antecedents and consequences. Planned Activities Training (PAT) focuses on teaching parents to plan for and engage in activities with their children. A multiple probe design counterbalancing PAT and CMT showed that PAT and CMT were about equally effective in improving mother-child interactions in four families with children with developmental disabilities. Responses to a social validation questionnaire indicated that parents were satisfied with the services received, and that PAT was the slightly preferred treatment. Prior research demonstrated that PAT enhanced the results of CMT. The practical advantages of PAT over CMT are discussed.
Njelesani, Janet; Leckie, Karen; Drummond, Jennifer; Cameron, Deb
Parents have a strong influence on their child's engagement in physical activities, especially for children with developmental disabilities, as these children are less likely to initiate physical activity. Knowledge is limited regarding parents' perceptions of this phenomenon in low- and middle-income countries (LMICs); yet many rehabilitation providers work with children with developmental disabilities and their parents in these contexts. The aim of this study was to explore the barriers perceived by parents of children with developmental disabilities to their children's engagement in physical activity. An occupational perspective was used to explore how parents speak about barriers to their child's engagement in physical activity. Interviews were conducted with nine parents in Port-of-Spain, Trinidad and Tobago. Parent's perceived barriers were categorized into four themes: family priorities, not an option in our environment, need to match the activity to the child's ability, and need for specialized supports. FINDINGS provide opportunities for future rehabilitation and community programming in LMICs. Implications for Rehabilitation Children living with a developmental disability may engage more in solitary and sedentary pursuits as a result of parents choosing activities that do not present extensive social and physical demands for their child. Therapists can play an important role in providing knowledge to parents of appropriate physical activity and the benefits of physical activity for children with developmental disabilities in order to promote children's participation. In environments where there is limited social support for families, therapists need to consider and be particularly supportive of parental priorities and schedules.
de Castilho, Lia Silva; Abreu, Mauro Henrique Nogueira Guimarães; Pires E Souza, Luiz Gustavo de Almeida; Romualdo, Leiliane Teresinha de Almeida; Souza E Silva, Maria Elisa; Resende, Vera Lúcia Silva
To investigate factors associated with anterior open bite in individuals aged from 2 to 33 years with developmental disabilities. This is a cross-sectional study. A total of 271 dental records were examined. The anterior open bite analyzed was determined based on clinic exam. These variables were also analyzed: gender, age, education level of mother, International Code of Diseases (ICD), mouth breathing, use of anticonvulsant drugs, hyperkinesis, pacifier use, thumb sucking, seizure, and involuntary movements. For the purposes of analysis, the individuals were categorized as being with and without anterior open bite. Variables with a p-value of open bite than nasal breathers. Pacifier users are more likely to have an anterior open bite (3.32-fold, 95% CI: 1.62-6.77). Individuals with reported involuntary movements had a 2.66-fold (95% CI: 1.26-5.63) greater chance of exhibiting anterior open bite. Users of anticonvulsants drugs had a 3.05 (95% CI: 1.57-5.92) greater chance of showing anterior open bite. Involuntary movements, mouth breathing, using anticonvulsant drugs, and using pacifier are factors associated with anterior open bite in patients with developmental disabilities. © 2017 Special Care Dentistry Association and Wiley Periodicals, Inc.
Hurtubise, Karen; Carpenter, Christine
To better understand the learning experiences of parents of children with developmental disabilities and the strategies they develop to support their caregiving role. A qualitative secondary analysis of in-depth interviews with parents of children with developmental disability was conducted to better understand parents' learning experiences and the strategies they developed to use this learning in supporting their children. A foundational thematic analysis process was used to identify the main themes, and the interpretive process was influenced by adult education theories. Findings suggest that participants are highly motivated to learn by a need to understand, to do, and to belong. They also demonstrated varying levels of cognitive, affective, and psychomotor learning. Learning style preferences are evident in participants' narratives and in their self-reported learning strategies. Conceptualizing parents, as adult learners, can be helpful in designing clinical interactions and education initiatives. Knowledge of adult learning principles may enable pediatric therapists to better meet the needs of parents and fulfill their information sharing responsibilities.
Wasfi, Rania; Steinmetz-Wood, Madeleine; Levinson, David
One of the major causes of social exclusion for people with developmental disability (PDD) is the inability to access different activities due to inadequate transportation services. This research paper identifies transportation needs, and reasons for unmet, but desired untaken trips of adults with developmental disabilities in Hennepin County, Minnesota. We hypothesize that PDD cannot make trips they want to make due to personal and neighborhood characteristics. A survey measuring existing travel behavior and unmet transportation needs of PDD (N = 114) was conducted. The survey included both demographic and attitudinal questions as well as a travel diary to record both actual and desired but untaken trips. Logistic regression analyses were conducted to determine reasons associated with their inability to make desired, but untaken trips. Most respondents did not live independently. More than half of the surveyed population worked every day and recreation trips occurred at least once a week for about two-thirds of the population. About 46% were unable to make trips they needed to make. Public transit posed physical and intellectual difficulties, however the presence of public transit in neighborhoods decreased odds of not making trips. Concerns about Paratransit services were also reported. Findings from this study can be of value to transportation engineers and planners interested in shedding light on the needs of a marginalized group that is rarely studied and have special transport needs that should be met to ensure their social inclusion in society. Copyright © 2016 Elsevier Inc. All rights reserved.
Moura, Octávio; Simões, Mário R; Pereira, Marcelino
This study analysed the usefulness of the Wechsler Intelligence Scale for Children-Third Edition in identifying specific cognitive impairments that are linked to developmental dyslexia (DD) and the diagnostic utility of the most common profiles in a sample of 100 Portuguese children (50 dyslexic and 50 normal readers) between the ages of 8 and 12 years. Children with DD exhibited significantly lower scores in the Verbal Comprehension Index (except the Vocabulary subtest), Freedom from Distractibility Index (FDI) and Processing Speed Index subtests, with larger effect sizes than normal readers in Information, Arithmetic and Digit Span. The Verbal-Performance IQs discrepancies, Bannatyne pattern and the presence of FDI; Arithmetic, Coding, Information and Digit Span subtests (ACID) and Symbol Search, Coding, Arithmetic and Digit Span subtests (SCAD) profiles (full or partial) in the lowest subtests revealed a low diagnostic utility. However, the receiver operating characteristic curve and the optimal cut-off score analyses of the composite ACID; FDI and SCAD profiles scores showed moderate accuracy in correctly discriminating dyslexic readers from normal ones. These results suggested that in the context of a comprehensive assessment, the Wechsler Intelligence Scale for Children-Third Edition provides some useful information about the presence of specific cognitive disabilities in DD. Practitioner Points. Children with developmental dyslexia revealed significant deficits in the Wechsler Intelligence Scale for Children-Third Edition subtests that rely on verbal abilities, processing speed and working memory. The composite Arithmetic, Coding, Information and Digit Span subtests (ACID); Freedom from Distractibility Index and Symbol Search, Coding, Arithmetic and Digit Span subtests (SCAD) profile scores showed moderate accuracy in correctly discriminating dyslexics from normal readers. Wechsler Intelligence Scale for Children-Third Edition may provide some useful
The number of children identified as having intellectual or developmental disability is rising worldwide and their education has been found wanting. It has been said that "they simply need better teaching." At the same time, there is an increasing evidence base that pedagogy that is based on the discipline of behaviour analysis offers the best prospect for individuals diagnosed with autism spectrum disorders. On the basis of this evidence, it is proposed that behaviour analysis should be applied more broadly to improve teaching for all children with intellectual or developmental disability.
Buskermolen, M.; Hoekman, J.; Aldenkamp, A.P.
Background and Objective: Studies on people with both Hearing Impairments (HI) and an Intellectual Disability (ID) are rare, although in clinical practice aggressive incidents such as destructive behaviour aimed at objects or other people and self-harming behaviour are mentioned as common problems.
Parent-child conflict is associated with a range of negative socioemotional outcomes for youth, including mental health problems, poorer social functioning, and long-term detrimental effects on romantic partnerships and their own parenting practices. Little is known about parent-child conflict in families of youth with developmental disabilities (DD), namely intellectual disability and autism spectrum disorders, despite their particular susceptibility to its problematic impact. Youth with DD ...
Balogh, Robert; Lin, Elizabeth; Dobranowski, Kristin; Selick, Avra; Wilton, Andrew S; Lunsky, Yona
Early hospital readmissions within 30 days of discharge are common and costly. This research describes predictors of all-cause, 30-day hospital readmissions among persons with intellectual and developmental disabilities (IDD), a group known to experience high rates of hospitalization. A cohort of 66,484 adults with IDD from Ontario, Canada, was used to create two subgroups: individuals with IDD only and those with IDD and mental illness. The rates of hospital readmission were determined and contrasted with a comparison subgroup of people without IDD who have mental illness. Compared with those with mental illness only, individuals with IDD and mental illness were 1.7 times more likely to experience a hospital readmission within 30 days. Predictors of their readmission rates included being a young adult and having high morbidity levels. The high rate of hospital readmission suggests that individuals with IDD and mental illness need attention regarding discharge planning and outpatient follow-up.
Hall, Sarah A; Rossetti, Zach
Siblings of people with intellectual and developmental disabilities (IDD) often assume key roles to support their brothers and sisters. For people with more significant support needs, siblings may undertake additional roles and responsibilities throughout their lives. The purpose of the present study was to identify and describe the roles of adult siblings who have a brother or sister with severe IDD. Seventy-nine adult siblings from 19 to 72 years of age completed an online survey with open-ended questions about the roles they play in their relationships with their brother or sister. Thematic analysis resulted in identification of several roles including caregiver, friend (social partner), advocate, legal representative, sibling (teacher/role model), leisure planner and informal service coordinator. Siblings assume key roles in the lives of people with IDD and need support from family and professionals to perform these roles. © 2017 John Wiley & Sons Ltd.
Renwick, Rebecca; Schormans, Ann Fudge; Shore, Deborah
Adults with intellectual/developmental disability (IDD), and their occupational participation, are vastly under-represented in Hollywood films. Because films often provide individuals' only experience of people with IDD, cinematic representations can influence audience perceptions. Thus, films can help inform public perceptions about desired and appropriate occupational participation for people with IDD, potentially impacting their access to meaningful occupational participation and achievement of occupational potential. Accordingly, this research examined occupational portrayals of adults with IDD in contemporary Hollywood films. Occupational portrayals, as defined here, refer to representations of the dynamic process of the person participating in occupation(s) in a context. Grounded theory methods guided coding and analysis of qualitative data collected from eight contemporary films using an occupation-focused tool. Two major, striking themes emerging from the qualitative analysis--infantilization and simplification of participation in complex occupations (with three associated sub-themes)--are discussed. Implications of the findings and future research directions are considered.
Shapiro, Michele; Melmed, Raphael N; Sgan-Cohen, Harold D; Parush, Shula
The aim of this study was to evaluate the effect of a sensory-adapted dental environment (SADE) on anxiety, relaxation, and cooperation of children with developmental disabilities (CDDs). Pharmacological treatment has been widely used to reduce anxiety, but nonpharmacological methods may be similarly effective. The standardized clinical situation chosen was a dental hygiene cleaning. A SADE was structured. Sixteen CDDs participated in an open cross-over intervention trial measuring behavioral and psychophysiological variables. There was a substantial increase in relaxation and cooperation in the SADE as opposed to the regular dental environment (RDE). This was reflected by: mean duration of anxious behaviors (SADE = 9.04 minutes vs. RDE = 23.44 minutes; P RDE = 15.50; P RDE = 1.94; P RDE = 446; P RDE=763; P < .004). The findings indicate the potential importance of considering the sensory-adapted environment as a preferable dental environment for this population.
Jepsen, Ruthanne H; VonThaden, Karen
A cognitive education program was developed to facilitate acquisition of cognitive skills and address the learning deficits of adolescent students with neurological, developmental disabilities, and autism. This study examined the outcomes of incorporating mediated cognitive education into special education classrooms. Cognitive education provided cognitive training utilizing REHABIT materials through mediated teaching. Following a matched pair model, forty-six students were assigned to either a treatment or a control group. All students received weekly instruction in Individual Educational Program (IEP) goals. Curriculum areas included IEP objectives in reading, math, social skills, health, science and social studies. Students in the control group received regular classroom instruction. Students in the treatment group participated in cognitive educated one hour per week replacing thirty minutes of reading and thirty minutes of math. Pre and posttest comparisons on measures of intelligence, achievement and adaptive behavior showed those students in the treatment group attained higher scores across measures.
Hamdani, Yani; Ary, Ayelet; Lunsky, Yona
Introduction: Stigma is widely identified as an issue affecting the health and well-being of people with intellectual and developmental disabilities (IDD), and those with mental illnesses. To address this issue, a population mental health strategy, which includes a focus on reducing stigma and discrimination, was developed by the government of…
Dart, Evan H.; Radley, Keith C.; Mason, Benjamin A.; Allen, Justin P.
Students with developmental disabilities have been found to exhibit higher rates of problem behavior in the classroom than their typically developing peers. Effectively addressing these students' behavior concerns requires the identification of interventions that can be implemented in an educational setting. Furthermore, matching intervention…
Hess, Mailee; Campagna, Elizabeth J.; Jensen, Kristin M.
Background: Adults with intellectual or developmental disability (ID/DD) have multiple risks for low bone mineral density (BMD) without formal guidelines to guide testing. We sought to identify risk factors and patterns of BMD testing among institutionalized adults with ID/DD. Methods: We evaluated risk factors for low BMD (Z-/T-score < -1) and…
O'Neill, Linda P.; Murray, Lindsay E.
Adult siblings of individuals with developmental disabilities often experience higher levels of anxiety than individuals in the general population. The present study tested whether perceived parenting could mediate the relationship between attachment styles and anxiety in the sibling group compared to a control group. Little association was found…
Halstead, Elizabeth; Ekas, Naomi; Hastings, Richard P.; Griffith, Gemma M.
There is variability in the extent to which mothers are affected by the behavior problems of their children with developmental disabilities (DD). We explore whether maternal resilience functions as a protective or compensatory factor. In Studies 1 and 2, using moderated multiple regression models, we found evidence that maternal resilience…
Parish, Susan L.
A focus group study was conducted to develop an understanding of the experiences of mothers who are trying to balance employment with caring for an adolescent with developmental disabilities. Mothers reported facing considerable difficulties balancing work and caregiving responsibilities because support services rapidly declined when their child…
Cobigo, V.; Ouellette-Kuntz, H.; Balogh, R.; Leung, F.; Lin, E.; Lunsky, Y.
Background: Effective cancer screening must be available for all eligible individuals without discrimination. Lower rates of cervical and breast cancer screening have been reported in certain groups compared with women from the general population, such as women with intellectual and developmental disabilities (IDD). Research on the factors…
Callow, Ella; Tahir, Munazza; Feldman, Maurice
Background: Parents with intellectual and developmental disabilities (IDDs) are over-represented in child welfare cases. Although IQ "per se" is an invalid indicator of parenting abilities, this study examined the prevalence of judicial consideration of parental IQ test evidence in US appellate cases. Methods: The present authors…
Francis, Grace L.; Gordon, Sarah; Kliethermes, Andrew J.; Regester, April; Baldini, Deborah; Grant, Amber
Postsecondary education programs (PSEs) for young adults with intellectual and developmental disabilities in colleges and universities expand opportunities for these young adults and result in positive outcomes, including employment and improved social networks. Although participating in postsecondary education results in numerous benefits for…
Fickert, Nancy A.; Ross, Diana
Caregivers who work in community living arrangements or intermediate care facilities are responsible for the oral hygiene of individuals with intellectual and developmental disabilities. Oral hygiene training programs do not exist in many organizations, despite concerns about the oral care of this population. The purpose of this study was to…
Flores, Margaret M.; Nelson, Cynthia; Hinton, Vanessa; Franklin, Toni M.; Strozier, Shaunita D.; Terry, LaTonya; Franklin, Susan
There is limited research demonstrating Direct Instruction (DI) as an effective reading comprehension intervention for students with autism spectrum disorders (ASD) and developmental disabilities (DD). Previous research has shown that DI, when portions of the program were implemented, resulted in increased skills (Flores & Ganz, 2007; Flores…
Campbell, Edward M.; Fortune, Jon; Severance, Donald; Holderegger, John; Fortune, Barbara
A database was assembled from data collected on all people served by the Developmental Disabilities divisions of Nebraska, South Dakota, and Wyoming, including state institutions and state-funded programs (n=5,928). Information included provider expenditures associated with each individual, allocations made by individual reimbursement rates,…
Raphael, Dennis; And Others
A conceptual model of quality of life, developed at the Centre for Health Promotion at the University of Toronto (Canada), and associated instrumentation for collecting data from persons with developmental disabilities are presented. Results from a preliminary study with 41 participants support the reliability and validity of the model's…
Moon, Sherril; Simonsen, Monica L.; Neubert, Debra A.
The purpose of this exploratory study was to survey community rehabilitation providers (CRPs) to determine their perceptions of the skills, experiences, and information that transitioning youth with developmental disabilities (DD) and their families need to access supported employment (SE) services. Supervisors of SE from 12 CRPs across one state…
Woodman, Ashley C.; Mawdsley, Helena P.; Hauser-Cram, Penny
Parents of children with developmental disabilities (DD) are at increased risk of experiencing psychological stress compared to other parents. Children's high levels of internalizing and externalizing problems have been found to contribute to this elevated level of stress. Few studies have considered the reverse direction of effects, however, in…
Leser, Kendall A.; Pirie, Phyllis L.; Ferketich, Amy K.; Havercamp, Susan M.; Wewers, Mary Ellen
Direct support professionals (DSPs) play a large social role in the lives of people with developmental disabilities (DD) and have the potential to influence their health behaviors. Six qualitative focus groups (n = 48) were conducted with DD community agency administrators, DSPs, family members and adults with DD to better understand the perceived…
Tanis, Emily Shea; Palmer, Susan; Wehmeyer, Michael; Davies, Daniel K.; Stock, Steven E.; Lobb, Kathy; Bishop, Barbara
Advancements of technologies in the areas of mobility, hearing and vision, communication, and daily living for people with intellectual and developmental disabilities has the potential to greatly enhance independence and self-determination. Previous research, however, suggests that there is a technological divide with regard to the use of such…
van der Meer, Larah; Kagohara, Debora; Achmadi, Donna; Green, Vanessa A.; Herrington, Christina; Sigafoos, Jeff; O'Reilly, Mark F.; Lancioni, Giulio E.; Lang, Russell; Rispoli, Mandy
Anecdotal reports suggest that individuals with developmental disabilities who lack speech may be enabled to communicate through the use of a new iPod-based communication device. However, there appear to be limited empirical data demonstrating successful use of this new device by such individuals. This study was designed to provide empirical…
Participant direction allows people with intellectual and developmental disabilities (IDD) and/or their families to direct services; in doing so, participant direction shifts participants from passive recipients to active consumers. Medicaid encourages, but does not require, states to allow participant direction. The aim of this study was to…
Chi, Donald L.; Momany, Elizabeth T.; Jones, Michael P.; Kuthy, Raymond; Damiano, Peter C.
We compared the extent to which having an intellectual or developmental disability was associated with rates at which Iowa Medicaid-enrolled children ages 3 to 8 had first dental checkups after an initial dental examination. We hypothesized that these children would have later first dental checkups than would children without an intellectual or…
Pieters, Stefanie; Roeyers, Herbert; Rosseel, Yves; Van Waelvelde, Hilde; Desoete, Annemie
A relationship between motor and mathematical skills has been shown by previous research. However, the question of whether subtypes can be differentiated within developmental coordination disorder (DCD) and/or mathematical learning disability (MLD) remains unresolved. In a sample of children with and without DCD and/or MLD, a data-driven…
Burke, Meghan; Arnold, Catherine; Owen, Aleksa
Although individuals with intellectual and developmental disabilities (IDD) are living longer lives, fewer than half of parents of individuals with IDD conduct future planning. The correlates and barriers to future planning must be identified to develop targeted interventions to facilitate future planning. In this study, 388 parents of individuals…
Houwen, Suzanne; Visser, Linda; van der Putten, Annette; Vlaskamp, Carla
It is generally agreed that cognitive and language development are dependent on the emergence of motor skills. As the literature on this issue concerning children with developmental disabilities is scarce, we examined the interrelationships between motor, cognitive, and language development in
Olsen, Darren L.
Social participation is an important resource for parents in old age, and may be particularly important for parents living with adult offspring with intellectual and developmental disabilities. To evaluate whether socializing with friends and family and participating in social organizations protects against depression in old age, this study…
Breau, Lynn M.; Camfield, Carol S.
Behavioral pain assessment is possible for children and youth with intellectual and developmental disabilities (IDD). However, pain behavior is often misinterpreted as reflecting psychopathology. We examined whether psychopathology alters pain behavior. Caregivers of 123 children (56 girls ages 40 to 258 months) completed the Non-Communicating…
Dammeyer, Jesper; Koppe, Simo
Research in social interaction and nonverbal communication among individuals with severe developmental disabilities also includes the study of body movements. Advances in analytical technology give new possibilities for measuring body movements more accurately and reliably. One such advance is the Qualisys Motion Capture System (QMCS), which…
Stothers, M. E.; Cardy, J. Oram
Asperger syndrome (AS) and nonverbal learning disabilities (NLD) are developmental disorders in which linguistic ability is reported to be stronger than in disorders from which they must be distinguished for diagnosis. Children and adults with AS and NLD share pragmatic weaknesses, atypical social behaviours, and some cognitive features. To date,…
Kagohara, Debora M.; Sigafoos, Jeff; Achmadi, Donna; van der Meer, Larah; O'Reilly, Mark F.; Lancioni, Giulio E.
We evaluated an intervention procedure for teaching three students with developmental disabilities to independently operate a portable multimedia device (i.e., an iPod Touch[R]) to listen to music. The intervention procedure included the use of video modeling, which was presented on the same iPod Touch[R] that the students were taught to operate…
Arthanat, Sajay; Curtin, Christine; Knotak, David
This study examined the use of the Apple iPad for learning by children with developmental disabilities (DD), including those on the autism spectrum. A single case design was used to record the participation of four students with DD when taught with their standard computer at baseline, followed by the introduction of the iPad. A six-component…
Davis, Cheryl; Bullis, Michael
This article summarizes 43 empirical studies of school-to-community transition of hearing-impaired persons with developmental disabilities; discusses data collection and interpretation issues; and recommends future research, development, and evaluation. The studies deal with such areas as career/vocational preparation, independent living skills,…
Skouge, James R.; Kelly, Mary L.; Roberts, Kelly D.; Leake, David W.; Stodden, Robert A.
This paper focuses on "technologies for voice" that are related to the self-determination of youth with developmental disabilities. The authors describe a self-determination model that values family-focused, community-referenced pedagogies employing "new media" to give voice to youth and their families. In line with the adage that a picture is…
Heller, Tamar; Arnold, Catherine K.; van Heumen, Lieke; McBride, Elizabeth L.; Factor, Alan
The study examined the differential experiences and outcomes for people with intellectual and developmental disabilities and their families receiving self-directed services based on the type of personal support worker hired (parents, siblings, other relatives, friends, and agency staff). The sample consisted of 372 participants in a self-directed…
Lancioni, G.E.; O'Reilly, M.F.; Cuvo, A.J.; Singh, N.N.; Sigafoos, J.; Didden, H.C.M.
This paper provides an overview of the literature dealing with the use of the Picture Exchange Communication System (PECS) and voice output communication aids (VOCAs) for promoting the performance of requests by students with developmental disabilities. Computerized and manual searches were carried
Hart, Stephanie L.; Banda, Devender R.
Picture Exchange Communication System (PECS) is a picture-based communication strategy used to teach communication skills to persons with developmental disabilities including autism. This article systematically reviews 13 published single-subject studies to examine the effectiveness of PECS, the effects of PECS on speech and problem behaviors,…
Conklin, Carl G.; Mayer, G. Roy
The purpose of this study is to evaluate the effects of "Picture Exchange Communication System" (PECS) training, using a multiple baseline design on the independent initiations of three adults with developmental disabilities and severe communication deficits. All participants increased their independent initiations, although at different…
Lancioni, Giulio E.; O'Reilly, Mark F.; Cuvo, Anthony J.; Singh, Nirbhay N.; Sigafoos, Jeff; Didden, Robert
This paper provides an overview of the literature dealing with the use of the Picture Exchange Communication System (PECS) and voice output communication aids (VOCAs) for promoting the performance of requests by students with developmental disabilities. Computerized and manual searches were carried out to identify the studies published during the…
Parish, Susan L.; Rose, Roderick A.; Swaine, Jamie G.
Background: Understanding how financial well-being changes through the life course of caregiving parents of children with developmental disabilities is critically important. Methods: We analyse SIPP (U.S. Census Bureau) data to describe income poverty, asset poverty, income, net worth, and liquid assets of US parents (N = 753) of children with…
Ohtake, Yoshihisa; Takeuchi, Ai; Watanabe, Kentaro
This study investigated the effectiveness of video self-modeling (VSM) for eliminating the public undressing of two elementary-aged students with developmental disabilities during urination. A multiple-probe design across participants revealed that the degree of exposed body parts decreased immediately after introduction of VSM. However, exposure…
McDonald, Katherine; Patka, Mazna
From an ethical standpoint, there are questions about the best ways to include adults with intellectual and developmental disabilities in research. Scholarship reflects divergent responses to these enduring questions and values that can be at odds with one another. To deepen our understanding of beliefs in the scientific community about how to…
Smith, Ashlyn L.; Romski, MaryAnn; Sevcik, Rose A.
This study examined communication interaction patterns when one sibling had a developmental disability as well as the role of communication skills in sibling relationship quality. Thirty sibling dyads were categorized into one of three communication status groups: emerging, context-dependent, and independent communicators. Independent…
Singer, George H. S.
Meta-analysis was used to synthesize findings from comparative studies of depression in mothers of children with and without developmental disabilities. Effect sizes were determined for 18 studies conducted between 1984 and 2003. A weighted effect size of 0.39 indicated an elevated level of depression in mothers of children with developmental…
Chan, Wai; Smith, Leann E.; Greenberg, Jan S.; Hong, Jinkuk; Mailick, Marsha R.
The present investigation explored long-term relationships of behavioral symptoms of adolescents and adults with developmental disabilities with the mental health of their mothers. Fragile X premutation carrier mothers of an adolescent or adult child with fragile X syndrome (n = 95), and mothers of a grown child with autism (n = 213) were…
Luiselli, James K.; St. Amand, CarrieAnne; MaGee, Christine; Sperry, James M.
We describe a training program to teach applied behavior analysis (ABA) knowledge competencies to paraprofessional staff (N = 47) at a habilitation services agency for adults with developmental disabilities. Before and following training, staff completed assessment of knowledge tests for three content areas: basic learning principles,…
Odluyurt, Serhat; Tekin-Iftar, Elif; Ersoy, Gulhan
The purpose of this study was to investigate the effects of school counselor supervised peer tutoring intervention on meeting IEP outcomes of six inclusion students with developmental disabilities in a public elementary and secondary school. The effectiveness of this intervention was evaluated by using multiple probe design across students.…
Williamson, Heather J.; Perkins, Elizabeth A.
Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver…
White, Susan W.; Smith, Laura A.; Schry, Amie R.
Assessment of global functioning is an important consideration in treatment outcome research; yet, there is little guidance on its evidence-based assessment for children with autism spectrum disorders. This study investigated the utility and validity of clinician-rated global functioning using the Developmental Disability-Child Global Assessment…
Seok, Soonhwa; DaCosta, Boaventura; Yu, Byeong Min
The present study compared a spelling practice intervention using a tablet personal computer (PC) and picture cards with three students diagnosed with developmental disabilities. An alternating-treatments design with a non-concurrent multiple-baseline across participants was used. The aims of the present study were: (a) to determine if…
Petner-Arrey, Jami; Howell-Moneta, Angela; Lysaght, Rosemary
People with intellectual and developmental disability (IDD) have historically had high unemployment and underemployment rates and continue to face significant barriers to attaining and sustaining employment. The purpose of this research, conducted in Ontario, Canada was to better understand the experiences of people with IDD gaining and keeping productivity roles. We used qualitative semi-structured interviews with 74 participants with IDD and their families or caregivers as proxies regarding the employment of a person with IDD. We selected a sample of persons from three different geographic regions in Ontario, Canada, and analyzed data through coding methods consistent with a grounded theory approach. Our results demonstrate the importance of parents and other members of social and family networks relative to connecting with work options and sustaining work over time, especially through continued advocacy and investment. Parents helped individuals with IDD negotiate the right job fit, though they often encountered challenges as a result of their efforts. Practitioners must understand how to support parents to be effective advocates for their adult children with IDD, assist them to develop and maintain their social networks and help them to avoid caregiver burnout. Implications for Rehabilitation People with intellectual and developmental disability (IDD) face numerous challenges in indentifying work options and overcoming barriers to employment. Parents and other non-paid support members of social networks can be instrumental in ensuring that persons with IDD not only secure initial job placements, but also sustain employment and employment alternatives. Professionals that support persons with IDD can direct their efforts to helping persons with IDD develop strong social connections, as well as helping parents to prevent burnout.
Grein, K A; Glidden, L M
Well-being outcomes for parents of children with intellectual and developmental disabilities (IDD) may vary from positive to negative at different times and for different measures of well-being. Predicting and explaining this variability has been a major focus of family research for reasons that have both theoretical and applied implications. The current study used data from a 23-year longitudinal investigation of adoptive and birth parents of children with IDD to determine which early child, mother and family characteristics would predict the variance in maternal outcomes 20 years after their original measurement. Using hierarchical regression analyses, we tested the predictive power of variables measured when children were 7 years old on outcomes of maternal well-being when children were 26 years old. Outcome variables included maternal self-report measures of depression and well-being. Final models of well-being accounted for 20% to 34% of variance. For most outcomes, Family Accord and/or the personality variable of Neuroticism (emotional stability/instability) were significant predictors, but some variables demonstrated a different pattern. These findings confirm that (1) characteristics of the child, mother and family during childhood can predict outcomes of maternal well-being 20 years later; and (2) different predictor-outcome relationships can vary substantially, highlighting the importance of using multiple measures to gain a more comprehensive understanding of maternal well-being. These results have implications for refining prognoses for parents and for tailoring service delivery to individual child, parent and family characteristics. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.
Full Text Available Yu-Pei Tsai,1,2 Li-Chen Tung,1,3 Ya-Chen Lee,4 Yu-Lin Wang,1,5 Yun-Shan Yen,1 Kuan-Lin Chen4,6 1Department of Physical Medicine and Rehabilitation, Chi-Mei Medical Center, Tainan, 2Department of Special Education, National Chiayi University, Chiayi, 3School of Medicine, Chung Shan Medical University, Taichung, 4Department of Occupational Therapy, College of Medicine, National Cheng Kung University, 5Department of Sports Management, Chia Nan University of Pharmacy and Science, 6Department of Physical Medicine and Rehabilitation, National Cheng Kung University Hospital, College of Medicine, National Cheng Kung University, Tainan, Taiwan Objective: The objective of this study was to examine the responsiveness of the Comprehensive Developmental Inventory for Infants and Toddlers (CDIIT in children with developmental disabilities (DD.Methods: The responsiveness of a measure is its ability to detect change over time, and it is fundamental to an outcome measure for detecting changes over time. We compared the responsiveness of four types of scores (ie, raw scores, developmental ages [DAs], percentile ranks [PRs], and developmental quotients [DQs] in the five subtests of the CDIIT. The CDIIT was administrated three times at intervals of 3 months on 32 children with DD aged between 5 months and 64 months (mean =30.6, standard deviation [SD] =17.8. The CDIIT is a pediatric norm-referenced assessment commonly used for clinical diagnosis of developmental delays in five developmental areas: cognition, language, motor, social, and self-care skills. The responsiveness was analyzed using three methods: effect size, standardized response mean, and paired t-test.Results: The effect size results showed that at the 3-month and 6-month follow-ups, responsiveness was small or moderate in the raw scores and DAs of most of the subtest scores of the CDIIT, but the level of responsiveness varied in the PRs and DQs. The standardized response mean results of the 3-month
Simplican, Stacy Clifford; Leader, Geraldine; Kosciulek, John; Leahy, Michael
Social inclusion is an important goal for people with intellectual and developmental disabilities, families, service providers, and policymakers; however, the concept of social inclusion remains unclear, largely due to multiple and conflicting definitions in research and policy. We define social inclusion as the interaction between two major life domains: interpersonal relationships and community participation. We then propose an ecological model of social inclusion that includes individual, interpersonal, organizational, community, and socio-political factors. We identify four areas of research that our ecological model of social inclusion can move forward: (1) organizational implementation of social inclusion; (2) social inclusion of people with intellectual and developmental disabilities living with their families, (3) social inclusion of people along a broader spectrum of disability, and (4) the potential role of self-advocacy organizations in promoting social inclusion. Copyright © 2014. Published by Elsevier Ltd.
Burke, Meghan M; Hodapp, Robert M
Although mothers of children with intellectual and developmental disabilities (IDD) experience high levels of stress and schools constitute an important resource, the relation remains unknown between maternal stress and educational services. Responding to a national, web-based survey, 965 mothers of students with disabilities completed a 163-item questionnaire about parent stress. We examined which child, parent, and parent-school characteristics correlated with maternal stress. Mothers with lower stress levels reported better parent-school relationships and low levels of parent advocacy. However, lower stress levels were predominantly shown by mothers with good-to-excellent parent-school relationships (vs. poor-to-fair partnerships) and who engaged in virtually no (vs. any) advocacy activities. Lower maternal stress levels were also noted when children had fewer behavior problems, Down syndrome, and did not have autism. Less stress was also reported by mothers who had not enacted procedural safeguards, were minorities, and rated themselves lower on neuroticism and were more extroverted, dependable, and open to new experiences. This study has important implications for practitioners and researchers.
Aman, Michael G.; Smith, Tristram; Arnold, L. Eugene; Corbett-Dick, Patricia; Rameshwari.Tumuluru; Hollway, Jill A.; Hyman, Susan L.; Mendoza-Burchamm, Marissa; Pan, Xueliang; Mruzek, Daniel W.; Lecavalier, Luc; Levato, Lynne; Silverman, Laura B.; Handen, Benjamin
This review summarizes the pharmacokinetic characteristics, pharmacodynamic properties, common side effects, and clinical advantages and disadvantages associated with atomoxetine (ATX) treatment in typically developing children and adults with ADHD. Then the clinical research to date in developmental disabilities (DD), including autism spectrum disorders (ASD), is summarized and reviewed. Of the 11 relevant reports available, only two were placebo-controlled randomized clinical trials, and both focused on a single DD population (ASD). All trials but one indicated clinical improvement in ADHD symptoms with ATX, although it was difficult to judge the magnitude and validity of reported improvement in the absence of placebo controls. Effects of ATX on co-occurring behavioral and cognitive symptoms were much less consistent. Appetite decrease, nausea, and irritability were the most common adverse events reported among children with DD; clinicians should be aware that, as with stimulants, irritability appears to occur much more commonly in persons with DD than in typically developing individuals. Splitting the dose initially, starting below the recommended starting dose, and titrating slowly may prevent or ameliorate side effects. Patience is needed for the slow build-up of benefit. Conclusions: ATX holds promise for managing ADHD symptoms in DD, but properly controlled, randomized clinical trials of atomoxetine in intellectual disability and ASD are sorely needed. Clinicians and researchers should be vigilant for emergence of irritability with ATX treatment. Effects of ATX on cognition in DD are virtually unstudied. PMID:24732041
Many young children with developmental disabilities (DD) have significant delays in social, communication, and play skills. For those children learning to use augmentative and alternative communication (.AAC% successful social interactions with peers will require explicit instruction on the same system for both communication partners. Peer-mediated (PM) interventions are recommended best practice based on more than 30 years of research with young children with autism and other DDs. Integrating direct AAC instruction within PM programs to advance social reciprocity in typical preschool routines is a necessary and important next step for young AAC users. In this article, I will summarize the design and outcomes of two PM AAC studies documenting positive social outcomes for preschool children with severe autism. I will also teach } peer partners how to use AAC highlight strategies to recruit peers without disabilities systems (e.g., Picture Exchange Communication System [PECS], Speech Generating Devices [SGDs]), and engineer the preschool classroom for successful AAC communication. I will describe data collection procedures for measuring changes in reciprocal child and peer social communication interactions.
Flanagan, O; Nualláin, S O
This is a retrospective study of children under six years of age referred to the Brothers of Charity Early Intervention Services in County Galway, a service that caters for children under 6 years with learning disabilities. The aim in doing this study was to assess the value of routine developmental screening in identifying children with learning difficulties. This study also investigates the patterns and sources of referral to the remedial services provided by the Brothers of Charity and highlights possible avoidable delays in referral. The results showed that many children were referred for remedial services late. The reasons for late referral included late identification of some children with problems, insufficient co-ordination of community-based services and a lack of awareness of the importance of early intervention in some cases. As some communication disorders such as autism, autistic spectrum disorders and specific language delay may not express themselves until the later part of the second year of life, the 18-24 month developmental assessment is of vital importance. However identification of these disorders can present difficulties and may call for additional training for professionals involved in the developmental screening of children in that age group. The interval between initial identification and referral for remedial care in many cases was more than twelve months. We propose that, in order to minimize this time, children requiring a more in-depth assessment should be assessed by a community-based multidisciplinary team, enabling integrated assessment by the different disciplines and thus speedier referral to remedial services.
Full Text Available The review presents a study provided to t the Faculty of psychology and Department of Graduate College of the University of Nebraska (United States by the Supervisory Commission draft Ed. S. Field Project. The Commission examined this study to assess the conformity of the rules of procedures for the award of a master's degree in the field of school psychology. Publication may be of interest to readers because of the unrelenting relevance of psycho-pedagogical problems of safety and effectiveness of educational environment for students with developmental and behavioral limitations, as well as the need to expand the arsenal of tools and school preventive intervention strategies in alternative schools. The publication helps to estimate the difficulty of psycho-pedagogical work and educational process in relation to children with severe personality disorderss
Rosenberg, Angela; Margolis, Lewis H; Umble, Karl; Chewning, Linda
This study describes the effects of interdisciplinary leadership training on a retrospective cohort (2001-2009) of the University of North Carolina MCH Leadership Education in Neurodevelopmental and Related Disabilities (UNC-CH LEND) program, including LEND graduates who were selected to participate in a focused Interdisciplinary Leadership Development Program (ILDP) in addition to their LEND training. Specifically, the study examined graduates' reports of the relationship between LEND training and their attitudes/beliefs about interdisciplinary practice, as well as their reported use of interdisciplinary skills in their post-fellowship practice settings. Using a post-test design, participants in the LEND and ILDP programs were contacted to complete an on-line survey. Using a Conceptual Model guided by EvaluLEAD, respondents were asked to rate the influence of the UNC-LEND training program on their attitudes/beliefs and skills using a 5-point Likert scale, as well as through open-ended descriptions. The 49 LEND respondents represented a 56% overall response rate from years 2001-2009. ILDP participants reported greater agreement with interdisciplinary attitudes/beliefs and more frequent use of interdisciplinary skills than did the non-participants. Graduates of LEND as well as ILDP reported the influence of training through a range of qualitative responses. Response examples highlight the influence of LEND training to promote outcomes at the individual, organizational and systems level. Findings from this study illustrate that MCHB funded LEND training has a strong influence on the future employment and interdisciplinary practices of graduates for the MCH workforce as well as services for individuals with developmental disabilities, their families and systems of care.
Parish, Susan L
A focus group study was conducted to develop an understanding of the experiences of mothers who are trying to balance employment with caring for an adolescent with developmental disabilities. Mothers reported facing considerable difficulties balancing work and caregiving responsibilities because support services rapidly declined when their child reached adolescence. Service cuts were related to the fact that adolescents are expected to be able to care for themselves, despite the fact that for many adolescents with disabilities, this is not possible. The mothers also reported that the preponderance of the responsibility for arranging care for their children was theirs and was not shouldered by their partners. Policy implications are discussed.
D'Arrigo, Stefano; Gavazzi, Francesco; Alfei, Enrico; Zuffardi, Orsetta; Montomoli, Cristina; Corso, Barbara; Buzzi, Erika; Sciacca, Francesca L; Bulgheroni, Sara; Riva, Daria; Pantaleoni, Chiara
Microarray-based comparative genomic hybridization is a method of molecular analysis that identifies chromosomal anomalies (or copy number variants) that correlate with clinical phenotypes. The aim of the present study was to apply a clinical score previously designated by de Vries to 329 patients with intellectual disability/developmental disorder (intellectual disability/developmental delay) referred to our tertiary center and to see whether the clinical factors are associated with a positive outcome of aCGH analyses. Another goal was to test the association between a positive microarray-based comparative genomic hybridization result and the severity of intellectual disability/developmental delay. Microarray-based comparative genomic hybridization identified structural chromosomal alterations responsible for the intellectual disability/developmental delay phenotype in 16% of our sample. Our study showed that causative copy number variants are frequently found even in cases of mild intellectual disability (30.77%). We want to emphasize the need to conduct microarray-based comparative genomic hybridization on all individuals with intellectual disability/developmental delay, regardless of the severity, because the degree of intellectual disability/developmental delay does not predict the diagnostic yield of microarray-based comparative genomic hybridization. © The Author(s) 2015.
Salt, Alison; Sargent, Jenefer
To present a structured approach for an outpatient consultation for a child with developmental disability who may have an ocular or visual disorder. Review of relevant literature and description of the approach to ocular and visual assessment which could be used by any paediatrician. A systematic approach to history, observation and examination of a child with a developmental disability will assist in identifying a possible visual problem. A structured referral letter will ensure that the child will receive the most appropriate assessment to clarify the problem and appropriate management in the eye clinic. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Miller, Rosalie J.; Shotwell, Mary P.
Translational research is redefined in this paper using a combination of methods in statistics and data science to enhance the understanding of outcomes and practice in occupational therapy. These new methods are applied, using larger data and smaller single-subject data, to a study in hippotherapy for children with developmental disabilities (DD). The Centers for Disease Control and Prevention estimates DD affects nearly 10 million children, aged 2–19, where diagnoses may be comorbid. Hippotherapy is defined here as a treatment strategy in occupational therapy using equine movement to achieve functional outcomes. Semiparametric ratio estimator (SPRE), a single-subject statistical and small data science model, is used to derive a “change point” indicating where the participant adapts to treatment, from which predictions are made. Data analyzed here is from an institutional review board approved pilot study using the Hippotherapy Evaluation and Assessment Tool measure, where outcomes are given separately for each of four measured domains and the total scores of each participant. Analysis with SPRE, using statistical methods to predict a “change point” and data science graphical interpretations of data, shows the translational comparisons between results from larger mean values and the very different results from smaller values for each HEAT domain in terms of relationships and statistical probabilities. PMID:29097962
Collins, Kyla; Staples, Kerri
One in three children in North America are considered overweight or obese. Children with intellectual and developmental disabilities (IDD) are at an increased risk for obesity than their typically developing peers. Decreased physical activity (PA) and low physical fitness may be contributing factors to this rise in obesity. Because children with IDD are at an increased risk of diseases related to inactivity, it is important to improve health-related physical fitness to complete activities of daily living and improve health. The focus of this research is on improving the performance of physical fitness components through physical activity programming among a group of children with IDD, ages 7-12 years. The Brockport Physical Fitness Test was used assess levels of physical fitness of 35 children with IDD (25 boys, 10 girls) before and after participation in a 10-week program. The results of paired sampled t-tests showed participation in 15-h PA program can significantly increase aerobic capacity and muscular strength and endurance in children with IDD. This study is aimed at understanding the role of PA in helping children with IDD to develop the fitness capacities essential to participation in a wide variety of activities. Copyright © 2017 Elsevier Ltd. All rights reserved.
Full Text Available The rapid growth in the number of individuals living with Intellectual and Developmental Disabilities (IDD along with their increased longevity present challenges to those concerned about health and well-being of this unique population. While much is known about health promotion and disease prevention in the general geriatric population, far less is known about those in older adults with IDD. Effective and efficient health promotion and disease prevention strategies need to be developed and implemented for improving the health and quality of life of older adults living with IDD. This is considered to be challenging given the continued shrinkage in the overall health care and welfare system services due to the cut in the governmental budget in some of the western countries. The ideal health promotion and disease prevention strategies for older adults with IDD should be tailored to the individuals’ health risks, address primary and secondary disease prevention and prevent avoidable impairments that cause premature institutionalization. Domains of intervention should include cognitive, mental and physical health, accommodations, workplace considerations, assistive technology, recreational activities and nutrition.
Bowling, Kevin M; Thompson, Michelle L; Amaral, Michelle D; Finnila, Candice R; Hiatt, Susan M; Engel, Krysta L; Cochran, J Nicholas; Brothers, Kyle B; East, Kelly M; Gray, David E; Kelley, Whitley V; Lamb, Neil E; Lose, Edward J; Rich, Carla A; Simmons, Shirley; Whittle, Jana S; Weaver, Benjamin T; Nesmith, Amy S; Myers, Richard M; Barsh, Gregory S; Bebin, E Martina; Cooper, Gregory M
Developmental disabilities have diverse genetic causes that must be identified to facilitate precise diagnoses. We describe genomic data from 371 affected individuals, 309 of which were sequenced as proband-parent trios. Whole-exome sequences (WES) were generated for 365 individuals (127 affected) and whole-genome sequences (WGS) were generated for 612 individuals (244 affected). Pathogenic or likely pathogenic variants were found in 100 individuals (27%), with variants of uncertain significance in an additional 42 (11.3%). We found that a family history of neurological disease, especially the presence of an affected first-degree relative, reduces the pathogenic/likely pathogenic variant identification rate, reflecting both the disease relevance and ease of interpretation of de novo variants. We also found that improvements to genetic knowledge facilitated interpretation changes in many cases. Through systematic reanalyses, we have thus far reclassified 15 variants, with 11.3% of families who initially were found to harbor a VUS and 4.7% of families with a negative result eventually found to harbor a pathogenic or likely pathogenic variant. To further such progress, the data described here are being shared through ClinVar, GeneMatcher, and dbGaP. Our data strongly support the value of large-scale sequencing, especially WGS within proband-parent trios, as both an effective first-choice diagnostic tool and means to advance clinical and research progress related to pediatric neurological disease.
Weissman-Miller, Deborah; Miller, Rosalie J; Shotwell, Mary P
Translational research is redefined in this paper using a combination of methods in statistics and data science to enhance the understanding of outcomes and practice in occupational therapy. These new methods are applied, using larger data and smaller single-subject data, to a study in hippotherapy for children with developmental disabilities (DD). The Centers for Disease Control and Prevention estimates DD affects nearly 10 million children, aged 2-19, where diagnoses may be comorbid. Hippotherapy is defined here as a treatment strategy in occupational therapy using equine movement to achieve functional outcomes. Semiparametric ratio estimator (SPRE), a single-subject statistical and small data science model, is used to derive a "change point" indicating where the participant adapts to treatment, from which predictions are made. Data analyzed here is from an institutional review board approved pilot study using the Hippotherapy Evaluation and Assessment Tool measure, where outcomes are given separately for each of four measured domains and the total scores of each participant. Analysis with SPRE, using statistical methods to predict a "change point" and data science graphical interpretations of data, shows the translational comparisons between results from larger mean values and the very different results from smaller values for each HEAT domain in terms of relationships and statistical probabilities.
Full Text Available Translational research is redefined in this paper using a combination of methods in statistics and data science to enhance the understanding of outcomes and practice in occupational therapy. These new methods are applied, using larger data and smaller single-subject data, to a study in hippotherapy for children with developmental disabilities (DD. The Centers for Disease Control and Prevention estimates DD affects nearly 10 million children, aged 2–19, where diagnoses may be comorbid. Hippotherapy is defined here as a treatment strategy in occupational therapy using equine movement to achieve functional outcomes. Semiparametric ratio estimator (SPRE, a single-subject statistical and small data science model, is used to derive a “change point” indicating where the participant adapts to treatment, from which predictions are made. Data analyzed here is from an institutional review board approved pilot study using the Hippotherapy Evaluation and Assessment Tool measure, where outcomes are given separately for each of four measured domains and the total scores of each participant. Analysis with SPRE, using statistical methods to predict a “change point” and data science graphical interpretations of data, shows the translational comparisons between results from larger mean values and the very different results from smaller values for each HEAT domain in terms of relationships and statistical probabilities.
Cassandra L. Tellegen
Full Text Available Parenting is central to the health and well-being of children. Children with developmental disabilities have been shown to be at increased risk of developing emotional and behavioral problems. Parent training programs are effective interventions for improving child behavior and family functioning. This paper describes the outcomes of a brief 4-session parenting intervention (Primary Care Stepping Stones Triple P targeting compliance and cooperative play skills in an 8-year-old girl with Asperger’s disorder and ADHD combined type. The intervention was associated with decreases in child behavior problems, increases in parenting confidence, and decreases in dysfunctional parenting styles. This paper demonstrates that low-intensity parenting interventions can lead to significant improvements in child behavior and family functioning. Such brief interventions are cost effective, can be widely disseminated, and have been designed to be delivered within primary health care settings. Pediatricians can play a key role in identifying parents in need of assistance and in helping them access evidence-based parenting interventions.
Levy, Allison; DeLeon, Iser G; Martinez, Catherine K; Fernandez, Nathalie; Gage, Nicholas A; Sigurdsson, Sigurdur Óli; Frank-Crawford, Michelle A
The overjustification hypothesis suggests that extrinsic rewards undermine intrinsic motivation. Extrinsic rewards are common in strengthening behavior in persons with intellectual and developmental disabilities; we examined overjustification effects in this context. A literature search yielded 65 data sets permitting comparison of responding during an initial no-reinforcement phase to a subsequent no-reinforcement phase, separated by a reinforcement phase. We used effect sizes to compare response levels in these two no-reinforcement phases. Overall, the mean effect size did not differ from zero; levels in the second no-reinforcement phase were equally likely to be higher or lower than in the first. However, in contrast to the overjustification hypothesis, levels were higher in the second no-reinforcement phase when comparing the single no-reinforcement sessions immediately before and after reinforcement. Outcomes consistent with the overjustification hypothesis were somewhat more likely when the target behavior occurred at relatively higher levels prior to reinforcement. © 2016 Society for the Experimental Analysis of Behavior.
Allen, Anna A; Schlosser, Ralf W; Brock, Kristofer L; Shane, Howard C
When working with individuals with little or no functional speech, clinicians often recommend that communication partners use the client's augmentative and alternative communication (AAC) device when speaking to the client. This is broadly known as "augmented input" and is thought to enhance the client's learning of language form and content. The purpose of this systematic review was to determine the effects of augmented input on communication outcomes in persons with developmental disabilities and persons with childhood apraxia of speech who use aided AAC. Nineteen studies met the inclusion criteria. Each included study was reviewed in terms of participant characteristics, terminology used, symbol format, augmented input characteristics, outcomes measured, effectiveness, and study quality. Results indicate that augmented input can improve single-word vocabulary skills and expression of multi-symbol utterances; however, comprehension beyond the single word level has not been explored. Additionally, it is difficult to form conclusions about the effect of augmented input on specific diagnostic populations. Directions for future research are posited.
Langkamp, Diane L; McManus, Mark D; Blakemore, Susan D
The literature on the use of telemedicine for children with developmental disabilities (DD) is limited and mostly describes telemedicine being used to link patients with distant subspecialty multidisciplinary care. Parents generally have reported satisfaction with such care and have perceived it to be equally effective as in-person care. Here we report on the use of school-based asynchronous telemedicine to connect children with DD with primary care providers. We developed Tele-Health-Kids, a school-based program using asynchronous telemedicine to connect children with DD with their primary care physician for the care of minor illnesses. We surveyed parents at enrollment and after the child's first telemedicine visit to assess satisfaction. We describe 4 cases that illustrate benefits, particularly for children with DD and challenging behaviors, suggesting that asynchronous telemedicine may actually be superior to traditional in-office visits in some circumstances. Most parents expressed a high level of satisfaction with the program. Benefits identified include decreased stress to the child and the parents as well as increasing the likelihood of a successful medical examination due to greater cooperation by the child. Visits using asynchronous or "store and forward" telemedicine technology may be superior in some situations by allowing the visit to be performed at a pace that can be adjusted to the needs of the child with DD. More research in the use of asynchronous telemedicine for children and youth with DD, particularly for children with DD and challenging behaviors, is needed.
Martin A. Volker
Full Text Available The Gilliam Autism Rating Scale-Second Edition (GARS-2 is a widely used screening instrument that assists in the identification and diagnosis of autism. The purpose of this study was to examine the factor structure, internal consistency, and screening sensitivity of the GARS-2 using ratings from special education teaching staff for a sample of 240 individuals with autism or other significant developmental disabilities. Exploratory factor analysis yielded a correlated three-factor solution similar to that found in 2005 by Lecavalier for the original GARS. Though the three factors appeared to be reasonably consistent with the intended constructs of the three GARS-2 subscales, the analysis indicated that more than a third of the GARS-2 items were assigned to the wrong subscale. Internal consistency estimates met or exceeded standards for screening and were generally higher than those in previous studies. Screening sensitivity was .65 and specificity was .81 for the Autism Index using a cut score of 85. Based on these findings, recommendations are made for instrument revision.
Glidden, L M; Billings, F J; Jobe, B M
Parents with children with developmental disabilities (DD) encounter a variety of stressors associated with rearing their children and must develop effective coping mechanisms in order to adapt successfully to these challenges. Previous research has failed to establish the role of parental individual differences in the reported use of different coping strategies. The current study explores parental personality and whether children with DD were adopted or born into the families and their influence on the coping strategies used by mothers and fathers. A total of 97 mother-father dyads rearing at least one child with DD were participants. They narrated stressful situations related to their child and completed the Ways of Coping Questionnaire twice. Data were also collected with regard to personality, depression and subjective well-being (SWB). Both adoptive and birth mothers and fathers used more problem-focused than emotion-focused strategies. Personality factors, Neuroticism especially, were predictive of coping strategy use. Higher levels of Positive Reappraisal were associated with higher levels of SWB, whereas higher levels of Escape-Avoidance were associated with lower levels of SWB, but only for mothers. Results were consistent with a dispositional model of strategy use in that frequency of use was associated with personality characteristics, was consistent over time, and for different children in the same families. Future research should focus on the persistence of the associations between strategy use and well-being and whether they hold true at different stages of the lifespan when coping contexts may change quite dramatically.
Kay-Raining Bird, Elizabeth; Trudeau, Natacha; Sutton, Ann
Children with DD must and do become bilingual, but the research reported in this special issue raises questions about equitable access to bilingual opportunities and provision of appropriate supports to ensure optimal bilingual growth in these children. The purpose of the present article was to apply the findings from our international collaboration to inform policy and practice on bilingualism in children with developmental disabilities (DD). To do this, we first overview the research presented in detail in other articles of this special issue: a narrative literature review, a review of site policies and practices related to special education and language education, a qualitative analysis of key informant interviews, and a quantitative analysis of surveys of practitioners. From these overviews emerge a complex set of contextual factors that impact bilingual development in children with DD. We then use the Bioecological Systems model of Bronfenbrenner and Morris (2007) and conceptual maps (C-maps) to examine the particular circumstances of three hypothetical children with DD who are in very different bilingual contexts. In so doing, areas of both positive and negative influence on lasting bilingualism are identified for each child. We end with recommendations for increasing access to and support for bilingualism in children with DD. Copyright © 2016 Elsevier Inc. All rights reserved.
Okyere, Christiana; Aldersey, Heather Michelle; Lysaght, Rosemary; Sulaiman, Surajo Kamilu
To advance understanding of practices that support inclusion of children with intellectual and developmental disabilities in inclusive education classrooms in Africa by conducting a review of the extant literature. Five academic databases were searched supplemented by a hand search of key journals and references of included studies. Two authors independently screened studies via a reference manager (Covidence) which allowed for blinding. A third author was consulted in cases of conflict. Thirty articles that provided empirical evidence of inclusive education implementation were included. Eight articles highlighted practices that support inclusion of children with intellectual and developmental disabilities. Using Bronfenbrenner's bioecological framework, findings revealed that inclusive education implementation is influenced by factors on the bio level, micro level, meso level, and macro level. Recommendations for promoting inclusive education implementation are provided. Inclusion goes beyond teachers and requires strong commitment of other stakeholders such as families and governments. To guarantee the smooth inclusion of children with special education needs and particularly with intellectual and developmental disabilities, a set of practices validated through rigorous research as supportive and unique and that can be universal to Africa is wise. Implications for rehabilitation A number of strategies were identified that can improve the classroom inclusion of children with intellectual and developmental disabilities. Development of policies that support such strategies could improve implementation. Inclusion goes beyond teachers. Rehabilitation professionals (i.e. occupational therapists) and educational professionals should partner to identify practical solutions to the challenges of creating inclusive environments for children with special education needs. Committing more resources and time towards the development and implementation of special education
Alzrayer, Nouf M; Banda, Devender R; Koul, Rajinder
Many children with autism spectrum disorders (ASD) and/or developmental disabilities are unable to meet their daily communication needs with speech alone. These individuals are considered potential candidates for speech-generating devices (SGDs) and mobile technologies with AAC-specific applications. The purpose of this study was to determine the effectiveness of systematic instruction on teaching multistep requesting skills using an iPad loaded with Proloquo2Go to children with ASD and other developmental disabilities. The participants in this study were four children between the ages of 8 and 10 years diagnosed with ASD and/or other developmental disabilities. The results indicated that for these participants, the intervention was effective in increasing multistep requesting using the iPad. All participants were successful to varying degrees in navigating across pages and combining symbols to request preferred items. Additionally, the participants demonstrated generalization of newly acquired skills by requesting different preferred items and activities during the generalization probes. Results are discussed and implications for research and practice are presented.
Van Riper, Cynthia L; Wallace, Lee Shelly
It is the position of the American Dietetic Association that nutrition services provided by registered dietitians (RDs) and dietetic technicians, registered (DTRs), are essential components of comprehensive care for all people with developmental disabilities and special health care needs. Nutrition services should be provided throughout life in a manner that is interdisciplinary, family-centered, community-based, and culturally competent. People with developmental disabilities and special health care needs frequently have nutrition concerns, including growth alterations (failure to thrive, obesity, or growth retardation), metabolic disorders, poor feeding skills, medication-nutrient interactions, and sometimes partial or total dependence on enteral or parenteral nutrition. Individuals with special needs are also more likely to develop comorbid conditions such as obesity or endocrine disorders that require nutrition interventions. Poor health habits, limited access to services, and long-term use of multiple medications are considered health risk factors. Health maintenance and avoidance of complications can be promoted by timely and cost-effective nutrition interventions. Public policy for individuals with special needs has evolved over time, resulting in a transition from institutional facilities and programs to community living. The expansion of public access to technology and health information on the Internet challenges RDs and DTRs to provide accurate scientific information for those with developmental disabilities and special health care needs. Nationally credentialed RDs and DTRs are best prepared to provide appropriate nutrition information for wellness and quality of life.
Schwartz, Ariel E; Kramer, Jessica M
Peer mentoring may be an effective approach for fostering skill development for mentors and mentees with developmental disabilities. However, little is known about how mentors with developmental disabilities perceive and enact their roles. (1) How do young adults with developmental disabilities describe their role as a peer mentor in the context of instrumental peer mentoring? (2) How do they enact their perceived roles? Thematic analysis of semi-structured reflections completed by six mentors with developmental disabilities (ages 17-35) with multiple mentoring experiences. Mentors perceived themselves as professionals with a primary role of teaching, and for some mentoring relationships, a secondary role of developing an interpersonal relationship. To enact these roles, mentors used a supportive interactional approach characterized by actions such as encouragement and sharing examples and dispositions, such as flexibility and patience. Mentors monitored mentee learning and engagement within the mentoring session and, as needed, adjusted their approach to optimize mentee learning and engagement. To successfully manage their interactional approach, mentors used supports such as peer mentoring scripts, tip sheets, and supervisors. While mentors reported several actions for teaching, they may benefit from training to learn approaches to facilitate more consistent development of interpersonal relationships. Implications for Rehabilitation Peer mentoring may be an effective approach for fostering skill development for young adult mentors and mentees with developmental disabilities. In this study, young adult peer mentors with developmental disabilities perceived themselves as professionals with a primary role of teaching and a secondary role of developing an interpersonal relationship. Peer mentors used actions and dispositions that matched their perceived roles and supported mentees with developmental disabilities to engage in instrumental mentoring. With supports and
Lauren J. Rice
Full Text Available In the present study we examined the nature and developmental trajectory of self-injurious behaviour in Prader Willi syndrome (PWS and autism spectrum disorder (ASD. The development of interventions is greatly aided by understanding gene to behaviour pathways, and this requires an accurate description of the behaviour phenotype, that is, which types and natural history of self-injurious behaviour are more common in PWS and ASD and which are shared with other forms of developmental disability. Self-injury displayed by individuals with PWS and individuals with ASD was compared with that reported in a group of individuals with intellectual disability due to mixed aetiology (ID group. Three self-injurious behaviours (head banging, skin-picking and hitting and/or biting self were measured on five occasions over 18 years using the Developmental Behaviour Checklist (DBC a well-validated caregiver report measure. Rates of skin picking were higher in individuals with PWS and hitting and/or biting self was higher in individuals with ASD compared to the ID group. Rates of head banging were similar across the three groups. Over time, skin-picking and head banging increased with age for individuals with ASD and hitting and/or biting self increased for the PWS group. In the PWS and mixed ID groups head banging decreased with age. These findings suggest that the typology and developmental trajectories of self-injurious behaviours differ between those with PWS and ASD.
Heller, Tamar; Factor, Alan
This article summarizes the proceedings of the Family Support and Intergenerational Caregiving work group that was part of the "State of the Science in Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Living" symposium. The aim was to provide a research and policy agenda that would result in a better social, health, and economic well being for adults with intellectual and developmental disabilities and family caregivers. Key issues addressed were (1) demographic challenges; (2) long-term outcomes, poverty and cultural minority status; (3) interdependent roles of family members; and (4) family support policies and practices. The group identified the following major gaps in knowledge that need to be included in a future research agenda: data on the demography of families, including information on cultural minorities and families living in poverty; research on the interdependent roles of various family members in providing support to each other, including siblings, grandparents, and the person with disabilities; and development and assessment of models for providing supports to families and that bridge the aging and disability networks. The outcomes of this recommended research agenda will result in progressive policies and culturally sensitive supports that will improve the health, social, and economic well-being of adults with I/DD and their families.
Carter, Erik W; Sisco, Lynn G; Brown, Lissa; Brickham, Dana; Al-Khabbaz, Zainab A
We examined the peer interactions and academic engagement of 23 middle and high school students with developmental disabilities within inclusive academic and elective classrooms. The extent to which students with and without disabilities interacted socially was highly variable and influenced by instructional format, the proximity of general and special educators, and curricular area. Peer interactions occurred more often within small group instructional formats, when students were not receiving direct support from a paraprofessional or special educator, and in elective courses. Academic engagement also varied, with higher levels evidenced during one-to-one or small group instruction and when in proximity of general or special educators. Implications for designing effective support strategies for students with autism and/or intellectual disability within general education classrooms are discussed.
Family-centredness of professionals who support people with profound intellectual and multiple disabilities: validation of the Dutch 'Measure of Processes of Care for Service Providers' (MPOC-SP-PIMD).
Jansen, Suzanne L G; van der Putten, Annette A J; Post, Wendy J; Vlaskamp, Carla
A Dutch version of the 'Measure of Processes of Care for Service Providers' (MPOC-SP) was developed to determine the extent to which professionals apply the principles of family-centred care in the rehabilitation of children with physical disabilities. However, no data were available on the reliability and construct validity of this instrument when it comes to supporting people with profound intellectual and multiple disabilities (PIMD). This study aimed to validate an adapted version of the Dutch MPOC-SP for assessing the family-centred behaviours of professionals who support this group (MPOC-SP-PIMD). A total of 105 professionals took part in the study. A Mokken scale analysis was conducted to determine whether the instrument satisfied the assumptions of both monotone homogeneity and double monotonicity. Loevinger's scalability coefficient (H) was used for the scalability of the entire scale and of each item separately. Rho was calculated as a measure of the internal consistency of the scales. The analyses resulted in two scales: a nine-item scale interpreted as 'Showing Interpersonal Sensitivity', with H=.39 and rho=.76, and a seven-item scale interpreted as 'Treating People Respectfully', with H=.49 and rho=.78. A validated version of the MPOC-SP-PIMD, suitable for supporting people with PIMD, consists of a subset of two scales from the original Dutch MPOC-SP. This instrument can be used to compare the family-centredness of professionals with parent's expectations and views. This information can be used in practice to match the support to the needs of the parents and family of the child with PIMD. Copyright © 2014 Elsevier Ltd. All rights reserved.
The study examined the effects of teaching presentation skills and post-school options to three high school students with developmental disabilities. While previous research has indicated students with learning disabilities can learn both academic and life skills within the same activity (Collins, Hager, & Galloway, 2011; Falkenstine, Collins,…
Schieve, Laura A.; Gonzalez, Vanessa; Boulet, Sheree L.; Visser, Susanna N.; Rice, Catherine E.; Braun, Kim Van Naarden; Boyle, Coleen A.
Studies document various associated health risks for children with developmental disabilities (DDs). Further study is needed by disability type. Using the 2006-2010 National Health Interview Surveys, we assessed the prevalence of numerous medical conditions (e.g. asthma, frequent diarrhea/colitis, seizures), health care use measures (e.g. seeing a…
Bourke-Taylor, Helen; Pallant, Julie F.; Law, Mary; Howie, Linsey
Aim: Many mothers of children with developmental disabilities are known to experience high levels of stress, and compromised mental health. Research is crucial to better understand and assist mothers with compromised mental health, and ultimately better service families raising and supporting a child with a disability. Method: Data were collected…
Far less is known about the effects of functional communication-based toileting interventions for students with developmental disabilities in a school setting. Furthermore, the currently available toileting interventions for students with disabilities include some undesirable procedures such as the use of punishment, unnatural clinic/university…
When children with profound multiple disabilities are hospitalized: A cross-sectional survey of parental burden of care, quality of life of parents and their hospitalized children, and satisfaction with family-centered care.
Seliner, Brigitte; Latal, Bea; Spirig, Rebecca
We aimed to assess parental burden of care, satisfaction with family-centered care, and quality of life (HRQoL) of parents and their hospitalized children with profound intellectual and multiple disabilities (PIMD), and determine the relationship among these factors. A cross-sectional study using printed questionnaires and qualitative questions was undertaken at a Swiss University Children's Hospital. The 117 parents (98 mothers, 19 fathers) studied indicated a substantial impact on burden of care and parental health-related quality of life. Significant correlations with the hospitalized children's well-being were rs = .408 for burden of care and rs -.368 for quality of life. Qualitative results showed parents struggling to safeguard their children and worrying most about the children's well-being. Health professionals need to be aware of parental burden and that the perception of the children's well-being and the parents' efforts determine their support needs. Easing parents' burden and fostering confidence in the hospitalized children's well-being requires coordination of care provided by advanced nurse specialists, with an institutional framework that clarifies parental collaboration. © 2016, Wiley Periodicals, Inc.
Hahn, Joan Earle
To describe the most frequently reported and the most central nursing interventions in an advance practice registered nurse (APRN)-led in-home preventive intervention model for adults aging with developmental disabilities using the Nursing Intervention Classification (NIC) system. A descriptive data analysis and a market basket analysis were conducted on de-identified nominal nursing intervention data from two home visits conducted by nurse practitioners (NPs) from October 2010 to June 2012 for 80 community-dwelling adults with developmental disabilities, ages 29 to 68 years. The mean number of NIC interventions was 4.7 in the first visit and 6.0 in the second visit and last visit. NPs reported 45 different intervention types as classified using a standardized language, with 376 in Visit One and 470 in Visit Two. Approximately 85% of the sample received the Health education intervention. The market basket analysis revealed common pairs, triples, and quadruple sets of interventions in this preventive model. The NIC nursing interventions that occurred together repeatedly were: Health education, Weight management, Nutrition management, Health screening, and Behavior management. Five NIC interventions form the basis of an APRN-led preventive intervention model for individuals aging with lifelong disability, with health education as the most common intervention, combined with interventions to manage weight and nutrition, promote healthy behaviors, and encourage routine health screening. Less frequently reported NIC interventions suggest the need to tailor prevention to individual needs, whether acute or chronic. APRNs employing prevention among adults aging with developmental disabilities must anticipate the need to focus on health education strategies for health promotion and prevention as well as tailor and target a patient-centered approach to support self-management of health to promote healthy aging in place. These NIC interventions serve not only as a guide for
de Valenzuela, Julia Scherba; Bird, Elizabeth Kay-Raining; Parkington, Karisa; Mirenda, Pat; Cain, Kate; MacLeod, Andrea A N; Segers, Eliane
The purpose of this article is to describe the results of a thematic analysis of 79 semi-structured interviews collected at six research sites in four countries in relation to the inclusion and exclusion of students with developmental disabilities (DD) in and from special education and bilingual opportunities. The participants were individuals with expertise either in special needs and/or language education to support bilingualism (e.g., second language (L2) instruction), who served as key informants about service delivery and/or policy in these areas. Six themes emerged as salient during the analysis: we include all kids, special needs drives it, time/scheduling conflicts, IEP/IPP/statement drives it, it's up to the parents, and service availability. The results suggested that access to language programs and services is limited for children with DD, even though participants at all sites reported adherence to a philosophy of inclusion. A priority on special education services over language services was identified, as well as barriers to providing children with DD access to programs and services to support bilingual development. Some of these barriers included time and scheduling conflicts and limited service availability. Additionally, the role of parents in decision making was affirmed, although, in contrast to special education services, decision-making about participation or exemption from language programs was typically left up to the parents. Overall, the results suggest a need for greater attention to providing supports for both first (L1) and L2 language development for bilingual children with DD and greater access to available language programs. Copyright © 2016 Elsevier Inc. All rights reserved.
Flore, Leigh Anne; Milunsky, Jeff M
Global developmental delay (GDD) and intellectual disability (ID) occur in up to 3% of the general population and are even more commonly encountered in the setting of the pediatric neurology clinic. New advances in technology and in the understanding of genetic disorders have led to changes in the diagnostic approach to a child with unexplained GDD or ID. Chromosomal microarray has become a first-line test for evaluation of patients in this population and has both significantly increased diagnostic yield and introduced new challenges in the interpretation of copy number variants of uncertain significance. The G-banded karyotype is now frequently utilized as an adjunct to the microarray rather than as a first-line test in individuals with GDD or ID. Fragile X DNA testing continues to be recommended in the initial evaluation of the child with GDD or ID. The presence or absence of certain cardinal features (such as microcephaly or macrocephaly, seizures, autism, abnormal neurologic examination, and facial dysmorphism) can be utilized to direct single-gene molecular testing. The availability of next-generation and massively parallel sequencing technologies has enabled the use of genetic testing panels, in which dozens of genes associated with GDD or ID may be rapidly analyzed. Most recently, the clinical availability of whole-genome and whole-exome sequencing has opened new possibilities for the evaluation of individuals with GDD or ID who have previously eluded a genetic diagnosis. Consultation with a medical geneticist is recommended when progressing beyond first-tier analyses to most efficiently prioritize testing. Copyright © 2012 Elsevier Inc. All rights reserved.
López-Pisón, J; García-Jiménez, M C; Monge-Galindo, L; Lafuente-Hidalgo, M; Pérez-Delgado, R; García-Oguiza, A; Peña-Segura, J L
Global developmental delay (GDD) and intellectual disability (ID) are common reasons for consultation in paediatric neurology. Results from aetiological evaluations of children with GDD/ID vary greatly, and consequently, there is no universal consensus regarding which studies should be performed. We review our experience with determining aetiological diagnoses for children with GDD/ID who were monitored by the paediatric neurology unit over the 5-year period between 2006 and 2010. During the study period, 995 children with GDD/ID were monitored. An aetiological diagnosis was established for 309 patients (31%), but not in 686 (69%), despite completing numerous tests. A genetic cause was identified in 142 cases (46% of the total aetiologies established), broken down as 118 cases of genetic encephalopathy and 24 of metabolic hereditary diseases. Our data seem to indicate that diagnosis is easier when GDD/ID is associated with cerebral palsy, epilepsy, infantile spasms/West syndrome, or visual deficit, but more difficult in cases of autism spectrum disorders. Genetic studies provide an increasing number of aetiological diagnoses, and they are also becoming the first step in diagnostic studies. Array CGH (microarray-based comparative genomic hybridisation) is the genetic test with the highest diagnostic yield in children with unexplained GDD/ID. The cost-effectiveness of complementary studies seems to be low if there are no clinically suspected entities. However, even in the absence of treatment, aetiological diagnosis is always important in order to provide genetic counselling and possible prenatal diagnosis, resolve family (and doctors') queries, and halt further diagnostic studies. Copyright © 2013 Sociedad Española de Neurología. Published by Elsevier Espana. All rights reserved.
Keith, Jessica M; Bennetto, Loisa; Rogge, Ronald D
Increases in intellectual and developmental disability (IDD) diagnoses coupled with higher rates of inclusion in school and community settings, has created more opportunities for exposure and integration between those with IDD and the mainstream population. Previous research has found that increased contact can lead to more positive attitudes toward those with IDD. The current study further investigated this impact of contact on attitudes by examining the influence of the quality and quantity of contact on both explicit and implicit levels of prejudice, while also considering potential mediation via intergroup anxiety and implicit attitudes. Based on past research and theory, we predicted that contact (especially quality contact) would have a strong relationship with explicit and implicit positive attitudes toward individuals with IDD. In the present study, 550 people completed a survey and short task that measured their level of contact with individuals with IDD across their lifetime, their current attitudes toward these individuals, and other constructs that are thought to influence this relationship. Multiple regression analyses suggested consistent links between higher quality of contact and lower levels of prejudice toward individuals with IDD at both the explicit and implicit levels. After controlling for quality of contact, higher quantity of contact was either not significantly associated with our measures of prejudice or was, importantly, associated with higher levels of prejudice. Additional analyses support intergroup anxiety and implicit positive attitudes as significant mediators in the associations between quality of contact and the various dimensions of explicit prejudice. Thus, it would seem that it is the quality of interpersonal interactions that is most strongly related to positive attitudes toward individuals with IDD, making it crucial to take care when developing inclusion opportunities in community settings. Copyright © 2015 Elsevier Ltd
Full Text Available PURPOSES: The first objective was to propose a new model representing the balance level of adults with intellectual and developmental disabilities (IDD using Principal Components Analysis (PCA; and the second objective was to use the results from the PCA recorded by regression method to construct and validate summative scales of the standardized values of the index, which may be useful to facilitate a balance assessment in adults with IDD. METHODS: A total of 801 individuals with IDD (509 males mean 33.1 ± 8.5 years old, were recruited from Special Olympic Games in Spain 2009 to 2012. The participants performed the following tests: the timed-stand test, the single leg stance test with open and closed eyes, the Functional Reach Test, the Expanded Timed-Get-up-and-Go Test. Data was analyzed using principal components analysis (PCA with Oblimin rotation and Kaiser normalization. We examined the construct validity of our proposed two-factor model underlying balance for adults with IDD. The scores from PCA were recorded by regression method and were standardized. RESULTS: The Component Plot and Rotated Space indicated that a two-factor solution (Dynamic and Static Balance components was optimal. The PCA with direct Oblimin rotation revealed a satisfactory percentage of total variance explained by the two factors: 51.6 and 21.4%, respectively. The median score standardized for component dynamic and static of the balance index for adults with IDD is shown how references values. CONCLUSIONS: Our study may lead to improvements in the understanding and assessment of balance in adults with IDD. First, it confirms that a two-factor model may underlie the balance construct, and second, it provides an index that may be useful for identifying the balance level for adults with IDD.
Heyn, Patricia C; Baumgardner, Chad A; McLachlan, Leslie; Bodine, Cathy
The purpose of this pilot study was to investigate the effectiveness of a mixed-reality (MR) exercise environment on engagement and enjoyment levels of individuals with spinal cord injury (SCI) and intellectual and developmental disabilities (IDD). Six people participated in this cross-sectional, observational pilot study involving one MR exercise trial. The augmented reality environment was based on a first-person perspective video of a scenic biking/walking trail in Colorado. Males and females (mean age, 43.3 ± 13.7 years) were recruited from a research database for their participation in previous clinical studies. Of the 6 participants, 2 had SCI, 2 had IDD, and 2 were without disability. The primary outcome measurement of this pilot study was the self-reported engagement and enjoyment level of each participant after the exercise trial. All participants reported increased levels of engagement, enjoyment, and immersion involving the MR exercise environment as well as positive feedback recommending this type of exercise approach to peers with similar disabilities. All the participants reported higher than normal levels of enjoyment and 66.7% reported higher than normal levels of being on a real trail. Participants' feedback suggested that the MR environment could be entertaining, motivating, and engaging for users with disabilities, resulting in a foundation for further development of this technology for use in individuals with cognitive and physical disabilities.
Woolfson, L; Grant, E
Rearing a child with a developmental disability is associated with increased parental stress. Theories of stress and adjustment and bi-directional theories of child development suggest that parenting could influence these negative outcomes. Relationships between parenting approaches and stress in parents of children with developmental disabilities (DD) (N = 53) were examined across two age groups, 3-5 years and 9-11 years and compared with a contrast group of typically developing children (TD) (N = 60). Measures used were the Parenting Stress Index-Short Form and Rickel and Biasatti's modification of Block's Child Rearing Practices Report, classified into Baumrind's parenting styles using Reitman and Gross's method. Parents in the older DD group used Authoritative parenting less than parents in the younger DD group, while the opposite developmental pattern was seen in the TD group. Multivariate analysis of variance showed a significant group x parenting style interaction for Parental Distress, Parent-Child Dysfunctional Interaction and Difficult Child. Stress measures were higher for the DD group and seemed to be associated with Authoritative parenting approaches, an effect that was not observed in the TD group. Findings suggest that the well-established effect of group on stress may be moderated by parenting style. Authoritative parenting may be highly stressful for parents of children with DD to implement, resulting in a decrease in its use across the two age groups.
Fisher, Kathleen M; Peterson, Justin D; Albert, Jon D
This descriptive cross-sectional study identified resources and programs that are available nationwide on the Internet to support individuals and families with intellectual and developmental disabilities (I/DD), with a focus on intellectual disability. This evaluation included easily identifiable information on specific resources and highlighted unique programs found in individual states that were linked from e-government websites. Researchers documented the ease of access and available information for all 50 states and the District of Columbia. A number of disparities and areas for improvement were recorded for states and I/DD websites. The researchers conclude that a number of additional health and support services will be needed to address the growing needs of this vulnerable population.
Smith, Ashlyn L; Romski, Maryann; Sevcik, Rose A
This study examined communication interaction patterns when one sibling had a developmental disability as well as the role of communication skills in sibling relationship quality. Thirty sibling dyads were categorized into one of three communication status groups: emerging, context-dependent, and independent communicators. Independent communicators and their siblings did not differ in terms of syntactic complexity but typically developing siblings dominated the interaction and exhibited greater lexical diversity regardless of communication status. Communication status did not impact the warmth/closeness, rivalry, or conflict in the sibling relationship, but siblings of independent communicators engaged in the greatest amount of helping and managing behaviors. These results represent a first step in understanding the role of communication skills in the sibling relationship for families of children with disabilities.
Nord, Derek; Luecking, Richard; Mank, David; Kiernan, William; Wray, Christina
Employment, career advancement, and financial independence are highly valued in the United States. As expectations, they are often instilled at a young age and incentivized throughout adulthood. Despite their importance, employment and economic sufficiency continue to be out of reach for most people with intellectual and developmental disabilities (IDD). Over the last quarter century, extensive research and effort has been committed to understanding and improving these phenomena. This paper summarizes this employment research base by reviewing the literature on the effectiveness of the current employment support system, employment-specific interventions, and the economics and cost benefits of employment for people with IDD. Recommendations and directions for future research are also presented.
Miguel Ángel VERDUGO ALONSO
Full Text Available The study focuses on the analysis of the central concepts that are influencing changes and transformations in the role of professionals and in the work done by organizations supporting people with intellectual and developmental disabilities in Spain. This includes the need for a global and systematic approach to the needs of the person, highlighting the importance of evidence to support professional, organizations and administrations decisions, and the influence that different systems (individual, family, organizational and social have in the life of the person. Finally, some conclusions are presented about the current moment and the immediate future.
Ballan, Michelle S; Freyer, Molly Burke
Youths with intellectual and developmental disabilities (ID/DD) are overrepresented in the American foster care system and experience heightened rates of pregnancy compared to their nondisabled peers. Yet limited information is known about sexually active or pregnant young women with ID/DD in foster care. Consequently, important healthcare needs of this population are not adequately addressed. This article explores sexuality education and sexual healthcare for female adolescents in foster care with ID/DD and recommends practice guidelines to support and prepare their emergent sexual development. Copyright © 2017 Elsevier Inc. All rights reserved.
Houwen, Suzanne; Visser, Linda; van der Putten, Annette; Vlaskamp, Carla
It is generally agreed that cognitive and language development are dependent on the emergence of motor skills. As the literature on this issue concerning children with developmental disabilities is scarce, we examined the interrelationships between motor, cognitive, and language development in children with intellectual and developmental disabilities (IDD) and compared them to those in children without IDD. In addition, we investigated whether these relationships differ between children with different levels of cognitive delay. Seventy-seven children with IDD (calendar age between 1;0 and 9;10 years; mean developmental age: 1;8 years) and 130 typically developing children (calendar age between 0;3 and 3;6 years; mean developmental age: 1;10 years) were tested with the Dutch Bayley Scales of Infant and Toddler Development, Third Edition, which assesses development across three domains using five subscales: fine motor development, gross motor development (motor), cognition (cognitive), receptive communication, and expressive communication (language). Results showed that correlations between the motor, cognitive, and language domains were strong, namely .61 to .94 in children with IDD and weak to strong, namely .24 to .56 in children without IDD. Furthermore, the correlations showed a tendency to increase with the severity of IDD. It can be concluded that both fine and gross motor development are more strongly associated with cognition, and consequently language, in children with IDD than in children without IDD. The findings of this study emphasize the importance of early interventions that boost both motor and cognitive development, and suggest that such interventions will also enhance language development. Copyright © 2016 Elsevier Ltd. All rights reserved.
Squier, Susan M
This essay draws on two emerging fields--the study of comics or graphic fiction, and disability studies--to demonstrate how graphic fictions articulate the embodied, ethical, and sociopolitical experiences of impairment and disability. Examining David B's Epileptic and Paul Karasik and Judy Karasik's The Ride Together, I argue that these graphic novels unsettle conventional notions of normalcy and disability. In so doing, they also challenge our assumed dimensions and possibilities of the comics genre and medium, demonstrating the great potential comics hold for disability studies.
Vohra, Rini; Madhavan, Suresh; Sambamoorthi, Usha; St Peter, Claire
This cross-sectional study examined perceived access to services, quality of care, and family impact reported by caregivers of children aged 3-17 years with autism spectrum disorders, as compared to caregivers of children with other developmental disabilities and other mental health conditions. The 2009-2010 National Survey of Children with Special Health Care Needs was utilized to examine the association between child's special needs condition and three outcomes (N = 18,136): access to services (difficulty using services, difficulty getting referrals, lack of source of care, and inadequate insurance coverage), quality of care (lack of care coordination, lack of shared decision making, and no routine screening), and family impact (financial, employment, and time-related burden). Multivariate logistic regressions were performed to compare caregivers of children with autism spectrum disorders to caregivers of children with developmental disabilities (cerebral palsy, Down syndrome, developmental delay, or intellectual disability), mental health conditions (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression), or both developmental disabilities and mental health conditions. Caregivers of children with autism spectrum disorders were significantly more likely to report difficulty using services, lack of source of care, inadequate insurance coverage, lack of shared decision making and care coordination, and adverse family impact as compared to caregivers of children with developmental disabilities, mental health conditions, or both. © The Author(s) 2013.
Child Adjustment and Parent Efficacy Scale-Developmental Disability (CAPES-DD): First psychometric evaluation of a new child and parenting assessment tool for children with a developmental disability.
Emser, Theresa S; Mazzucchelli, Trevor G; Christiansen, Hanna; Sanders, Matthew R
This study examined the psychometric properties of the Child Adjustment and Parent Efficacy Scale-Developmental Disability (CAPES-DD), a brief inventory for assessing emotional and behavioral problems of children with developmental disabilities aged 2- to 16-years, as well as caregivers' self-efficacy in managing these problems. A sample of 636 parents participated in the study. Children's ages ranged from 2 to 15. Exploratory and confirmatory factor analyses supported a 21-item, three-factor model of CAPES-DD child adjustment with 13 items describing behavioral (10 items) and emotional (3 items) problems and 8 items describing prosocial behavior. Three additional items were included due to their clinical usefulness and contributed to a Total Problem Score. Factor analyses also supported a 16-item, one factor model of CAPES-DD self-efficacy. Psychometric evaluation of the CAPES-DD revealed scales had satisfactory to very good internal consistency, as well as very good convergent and predictive validity. The instrument is to be in the public domain and free for practitioners and researchers to use. Potential uses of the measure and implications for future validation studies are discussed. Copyright © 2015 Elsevier Ltd. All rights reserved.
Fickert, Nancy A; Ross, Diana
Caregivers who work in community living arrangements or intermediate care facilities are responsible for the oral hygiene of individuals with intellectual and developmental disabilities. Oral hygiene training programs do not exist in many organizations, despite concerns about the oral care of this population. The purpose of this study was to determine the effectiveness of a caregiver educational program. This study used a quasi-experimental one-group pretest/posttest design with repeated measures to describe the outcomes of an educational program. Program participants demonstrated oral hygiene skills on each other while being scored by a trained observer, after which they completed an oral hygiene compliance survey. After three months, a follow-up included the same posttest, demonstration of oral hygiene skills, and repeat of the compliance survey. Paired-sample t-tests of oral hygiene knowledge showed a statistically significant improvement from pretest to posttest and from pretest to three-month posttest. Oral hygiene skills and compliance improved. Results demonstrate evidence that caregiver education improves knowledge, skill, and compliance in oral hygiene. Further studies are required to demonstrate the value of providing oral hygiene education and training for caregivers of individuals with intellectual and developmental disabilities.
Slattery, Éadaoin; McMahon, Jennifer; Gallagher, Stephen
Researchers have consistently documented the relationship between optimism and benefit finding; however, there is a dearth of research on the psychological mechanisms mediating their association. This cross-sectional study sought to elucidate the mediating role of positive reappraisal and social support in the optimism-benefit finding relationship in parents caring for children with developmental disabilities by testing a parallel multiple mediation model. One hundred and forty-six parents caring for children with developmental disabilities completed an online survey assessing optimism, positive reappraisal, social support and benefit finding. Optimism was not directly related to benefit finding but rather influenced it indirectly through positive reappraisal and social support. Specifically, higher levels of optimism predicted greater positive reappraisal and social support, which in turn led to greater benefit finding in parents. These results underscore the importance of targeting parents' perceptions of benefits through both positive reappraisal and social support in order to help them cope with the demands of the caregiving context. Copyright © 2017 Elsevier Ltd. All rights reserved.
Novo-Filho, Gil M; Montenegro, Marília M; Zanardo, Évelin A; Dutra, Roberta L; Dias, Alexandre T; Piazzon, Flavia B; Costa, Taís V M M; Nascimento, Amom M; Honjo, Rachel S; Kim, Chong A; Kulikowski, Leslie D
The most prevalent structural variations in the human genome are copy number variations (CNVs), which appear predominantly in the subtelomeric regions. Variable sizes of 4p/4q CNVs have been associated with several different psychiatric findings and developmental disability (DD). We analyzed 105 patients with congenital anomalies (CA) and developmental and/or intellectual disabilities (DD/ID) using MLPA subtelomeric specific kits (P036 /P070) and 4 of them using microarrays. We found abnormal subtelomeric CNVs in 15 patients (14.3%), including 8 patients with subtelomeric deletions at 4p/4q (53.3%). Additional genomic changes were observed at 1p36, 2q37.3, 5p15.3, 5q35.3, 8p23.3, 13q11, 14q32.3, 15q11.2, and Xq28/Yq12. This indicates the prevalence of independent deletions at 4p/4q, involving PIGG, TRIML2, and FRG1. Furthermore, we identified 15 genes with changes in copy number that contribute to neurological development and/or function, among them CRMP1, SORCS2, SLC25A4, and HELT. Our results highlight the association of genes with changes in copy number at 4p and 4q subtelomeric regions and the DD phenotype. Cytogenomic characterization of additional cases with distal deletions should help clarifying the role of subtelomeric CNVs in neurological diseases. © 2016 S. Karger AG, Basel.
Osada, Hirokazu; Coelho de Amorim, Annibal; Velosa, Andrea; Wan, Wong Poh; Lotrakul, Panpimol; Hara, Hitoshi
Compared with US or European countries, there are fewer mental health services for mothers of children with developmental disabilities in Latin American and/or Southeast Asian countries. To explore the risk of depression in mothers of children with developmental disabilities in countries with a lack of mental health professionals, we conducted cross-cultural comparisons for four countries: Brazil, Colombia, Malaysia and Thailand. Using the CES-D, we compared the participants' depressive symptoms, by which we also estimated the probability of morbid depression. In every country, participants tended to show depressive symptoms. In the CES-D total scores and the numbers of mothers who were observed to have a high level of depressive symptoms, there were significant differences among countries (F = 4.36, p = .006; χ2 = 10.3, p = .015). Considering cultural models, we could apply evidence-based intervention to depressive mothers of children, and conduct intervention and treatment for those mothers and evaluate ways of providing better mental health services to these individuals.
BARKER, R. MICHAEL; AKABA, SANAE; BRADY, NANCY C.; THIEMANN-BOURQUE, KATHY
Little is known about how AAC use in preschool may impact language development for children with complex communication needs (e.g., children with autism, cerebral palsy, Down syndrome, and other developmental disabilities). We developed two surveys (a) to describe children’s use of AAC in preschool classrooms, as well as the use of prompts and question asking, and augmented input by their communication partners; and (b) to describe teachers’ experience, training, and perceived support in providing AAC. We then examined the relationship between children’s experience of AAC, including the use of prompts, question asking, and augmented input by their partners, and the growth of receptive and expressive language for 71 children with developmental disabilities over a two-year period. The use of AAC by peers to provide augmented input was associated with stronger language growth; the use of prompting and question asking by teachers was associated with weaker language growth. Teachers reported that they received little training regarding ways to support a child’s use of AAC. Results suggest the need for further research on promoting AAC use at the preschool level, including research to promote peer interactions for AAC users. PMID:24229337
Tice, Carolyn J; Hall, Diane M Harnek
People with disabilities are sexual beings who, like all of us, benefit from sexuality education that examines relationship skills and knowledge, attitudes, behaviors, and values that promote healthy sexuality within those relationships. This article provides an overview of landmark policies relevant to persons with disabilities, defines the strengths perspective in the context of curriculum development, and describes a survey built on this perspective that evaluates sexuality education curricula on the strengths rather than the deficits of people.
Lin, Sue C; Gold, Robert S
Assistive technology (AT) enhances the ability of individuals with disabilities to be fully engaged in activities at home, at school, and within their communities-especially for children with developmental disabilities (DD) with physical, sensory, learning, and/or communication impairments. The prevalence of children with DD in the United States has risen from 12.84% in 1997 to 15.04% in 2008. Thus, it is important to monitor the status of their AT needs, functional difficulties, services utilization, and coordination. Using data from the 2009-2010 National Survey on Children with Special Health Care Needs (NS-CSHCN), we conducted bivariate and multivariate statistical analysis, which found that 90% or more of parents of both children with DD and other CSHCN reported that their child's AT needs were met for vision, hearing, mobility, communication, and durable medical equipment; furthermore, children with DD had lower odds of AT needs met for vision and hearing and increased odds for meeting AT needs in mobility and communication. Our findings outline the current AT needs of children with DD nationally. Fulfilling these needs has the potential to engender positive lifelong effects on the child's disabilities, sense of independence, self-confidence, and productivity.
Full Text Available This paper examines the narration of developmental disability through interviews between participants, researchers, and members of community organizations serving the disabled population, in the context of university-community collaborations. These kinds of collaborations are extremely important for researching vulnerable or hard-to-reach populations, which often face lower levels of physical, mental, and social well-being as a consequence of shame, stigma, or discrimination. Community collaboration can thus be invaluable for reaching members of marginalized populations, who may be difficult to locate or otherwise avoid contact with outsiders, because it provides members of a research team with local knowledge of a population, a means of accessing possible participants, and legitimation for the project. I suggest, however, that although the researcher's externality may initially invite skepticism toward the investigation from participants, it can also benefit them by providing a forum for catharsis. Based on a pilot study I conducted with a community advocacy organization for the disabled, I note that some participants expressed an appreciation for being able to discuss certain emotions and experiences during interviews with an outsider who was not involved as a caseworker. I conclude that the presence of a trusted community advocate and a researcher at an interview affects a participant's narrative by providing a safe space for participants to voice their stories to outsiders.
Cagran, B; Schmidt, M; Brown, I
Research was conducted, within the framework of the International Family Quality of Life Project, on the quality of life of families with a member who has a disability. We concentrated on the nine specific domains that the family life measure used, and recorded data from five of its six measurement dimensions: Importance, Opportunities, Initiative, Attainment and Satisfaction. The sample consisted of 20 families from Slovenia with children who have intellectual or developmental disabilities. The data were collected using the Family Quality of Life Survey-2006. Except for Community Interaction, the other domains (Health, Financial Well-Being, Family Relations, Support from Others, Support Services, Influence of Values, Careers, Leisure and Recreation) show statistically significant differences among the five dimensions measured. Importance was rated highest, and Attainment and Opportunities were rated lowest, while Initiative and Satisfaction were evaluated lower than Importance but higher than Attainment and Opportunities. Among the domains of family life, Family Relations was evaluated the highest from the perspective of all five dimensions. The family members rated Importance high for all of the quality of family life domains, but it appears from the lower Opportunities scores that their opportunities are limited; this may result in fewer possibilities for attaining a better quality of life. The results of our research are useful to Slovene researchers who work in the areas of special pedagogy and rehabilitation, politicians, non-governmental organisations and social services. The quality of life of families with children with disabilities, their empowerment and their inclusion into community life should be significantly enhanced when consideration is given to all the family members' support and service needs. © 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.
Ayoob, Keith-Thomas; And Others
Thirteen children (ages 3.1 to 5.2 years) referred for developmental delay and excessive eating (without obesity) were evaluated. Commonalities included being in foster care, prenatal drug exposure, and abnormally withdrawn and/or aggressive behavior. (Author/DB)
Oeseburg, B.; Groothoff, J. W.; Dijkstra, G. J.; Reijneveld, S. A.; Jansen, D. E. M. C.
Evidence on the association between somatic chronic diseases in ID-adolescents and the full range of pervasive developmental disorder behavior (PDD behavior) is scarce. The aim of the present study is to assess the association between somatic chronic diseases in ID-adolescents and mild PDD behavior. We obtained data on 1044 ID-adolescents, aged…
Lundqvist, Lars-Olov; Andersson, Gunilla; Viding, Jane
Vibroacoustic music has been proposed to be an effective treatment for individuals with developmental disorders and challenging behaviors. The present study experimentally tested the effects of vibroacoustic music on self-injurious, stereotypical, and aggressive destructive behaviors in 20 individuals with autism spectrum disorders and…
Oeseburg, B.; Groothoff, J. W.; Dijkstra, G. J.; Reijneveld, S. A.; Jansen, D. E. M. C.
Evidence on the association between somatic chronic diseases in ID-adolescents and the full range of pervasive developmental disorder behavior (PDD behavior) is scarce. The aim of the present study is to assess the association between somatic chronic diseases in ID-adolescents and mild PDD behavior.
Zaal-Schuller, I. H.; de Vos, M. A.; Ewals, F. V. P. M.; van Goudoever, J. B.; Willems, D. L.
The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors influence their decisions. We searched MEDLINE, EMBASE, CINAHL and
Price, Richard; Marsh, Abbie J; Fisher, Marisa H
Facilitating the use of public transportation enhances opportunities for independent living and competitive, community-based employment for individuals with intellectual and developmental disabilities (IDD). Four young adults with IDD were taught through total-task chaining to use the Google Maps application, a self-prompting, visual navigation system, to take the bus to locations around a college campus and the community. Three of four participants learned to use Google Maps to independently navigate public transportation. Google Maps may be helpful in supporting independent travel, highlighting the importance of future research in teaching navigation skills. Learning to independently use public transportation increases access to autonomous activities, such as opportunities to work and to attend postsecondary education programs on large college campuses.Individuals with IDD can be taught through chaining procedures to use the Google Maps application to navigate public transportation.Mobile map applications are an effective and functional modern tool that can be used to teach community navigation.
Kearney, Kelly B; Brady, Michael P; Hall, Kalynn; Honsberger, Toby
Many adolescents with developmental disabilities do not learn the safety skills needed to maintain physical well-being in domestic and community environments. Literacy-based behavioral interventions (LBBIs) that combine print, pictures, and behavioral rehearsal are effective for promoting acquisition and maintenance of self-care skills, but have not been investigated as safety skill intervention. Also, LBBIs have primarily been implemented by teachers and other professionals. In this study, a peer partner was taught to deliver an LBBI story to students so they would learn to perform a basic first aid routine: cleaning and dressing a wound. Results showed that students' accuracy with the first aid routine increased after a peer delivered the LBBI instructional package, and maintained after the peer stopped delivering it. This study demonstrates the effectiveness of the LBBI instructional package for teaching first aid safety skills, and extends previous research showing the efficacy of peers in delivering this intervention.
Full Text Available Background: The objective of the qualitative study was to describe the perspectives of high school educators regarding how adolescents with developmental disabilities are taught about sexuality and dating. In addition, the investigators sought to examine how occupational therapy practitioners could be better integrated into the educational team to address this need. Method: Data was collected through semi-structured interviews and analyzed using the constant comparative method. Results: Three major themes emerged: (a sexuality is unique to each student, (b teachers and parents do not know what to do, and (c a potential role for OT. Conclusions: Occupational therapy practitioners may be well suited to address the needs identified through this study given their unique expertise.
O'Neill, Linda P; Murray, Lindsay E
Adult siblings of individuals with developmental disabilities often experience higher levels of anxiety than individuals in the general population. The present study tested whether perceived parenting could mediate the relationship between attachment styles and anxiety in the sibling group compared to a control group. Little association was found between perceived parenting and attachment styles or anxiety for the siblings but there were robust and expected findings for the control. Adult attachment-related-anxiety was a significant unique predictor of anxiety in the sibling group but there was no mediational role for perceived parenting. Conversely, the majority of parenting styles significantly mediated the relationship between attachment and anxiety in the control. Implications for the atypical findings in the sibling group are discussed.
Inagaki, Masumi; Horiguchi, Toshihiro; Kaga, Makiko
The social networks between Japanese child neurologists and welfare facilities/specialists for children with mental retardation (MR) were assessed. A total of 113 physicians answered our mail-in questionnaire. Most of the doctors had various connections with nursery homes for children with MR or severe motor and intellectual disabilities (SMID) and with public health centers, and often collaborated with teachers of schools and kindergartens. On the other hand, most physicians had little relation with residential and vocational facilities for adults with MR, and with specialists in residential or community care. There was a statistical correlation between the number of facilities or collaborated specialists and the number of persons seen by each physician; however, the physicians' experience and affiliations had no relation. In view of 'social participation', physicians who usually see children with developmental disorders can play an important role in decision making of their life-style with their families.
Robinson, Suzanne; Hastings, Richard P; Weiss, Jonathan A; Pagavathsing, Jaffni; Lunsky, Yona
Parenting an individual with intellectual and developmental disabilities (IDD) can be challenging, particularly during adulthood. It is important to better understand ways of supporting families as individuals with IDD age. Self-compassion is a potential internal coping resource for parents, and is strongly linked to positive mental health outcomes, though research has yet to examine it in parents of adults with IDD. The current study examines the association between self-compassion and measures of well-being for 56 parents of adults with IDD. Greater self-compassion was related to lower levels of stress and depression, even after accounting for other known stressors, such as economic disadvantage, having a child with an Autism Spectrum Disorder diagnosis, and high parent burden. Self-compassion may offer resiliency against these parenting challenges. © 2017 John Wiley & Sons Ltd.
Webster, Amanda A.; Carter, Mark
Background: One of the most commonly cited rationales for inclusive education is to enable the development of quality relationships with typically developing peers. Relatively few researchers have examined the features of the range of relationships that children with developmental disability form in inclusive school settings. Method: Interviews…
Leung, Cynthia; Fan, Angel; Sanders, Matthew R.
The study examined the effectiveness of Group Triple P, a Level 4 variant of the Triple P multilevel system of parenting support, with Chinese parents who had a preschool aged child with a developmental disability, using randomized controlled trial design. Participants (Intervention group: 42; Waitlist Control group: 39) completed measures on…
Madsen, Emily K.; Peck, Janelle A.; Valdovinos, Maria G.
In working with individuals with intellectual and developmental disabilities (IDDs), it is direct care staff who are often required to collect data on individuals' behavior which is used as the basis for implementation of empirically based approaches for intervention and treatment. Due to limited resources, indirect and descriptive measures of…
Vohra, Rini; Madhavan, Suresh; Sambamoorthi, Usha; St Peter, Claire
This cross-sectional study examined perceived access to services, quality of care, and family impact reported by caregivers of children aged 3-17 years with autism spectrum disorders, as compared to caregivers of children with other developmental disabilities and other mental health conditions. The 2009-2010 National Survey of Children with…
Mason, Rose A.; Schnitz, Alana G.; Wills, Howard P.; Rosenbloom, Raia; Kamps, Debra M.; Bast, Darcey
Ensuring educational progress for students with moderate-to-severe developmental disabilities requires exposure to well executed evidence-based practices. This necessitates that the special education workforce, including paraprofessionals, be well-trained. Yet evidence regarding effective training mechanisms for paraprofessionals is limited. A…
Fischer, Leonard S.; Becker, Andrew; Paraguya, Maria; Chukwu, Cecilia
Adults with intellectual and developmental disabilities (IDD) frequently have comorbidities that might interfere with colonoscopy preparation and examination. In this article, the authors review their experience with colonoscopies performed from 2002 through 2010 on adults with IDD at a state institution to evaluate quality and safety of…
Reindl, Marie-Sol; Waltz, Mitzi; Schippers, Alice
This study focused on parent-initiated supported living schemes in the South of the Netherlands and the ability of these living schemes to enhance participation, choice, autonomy and self-advocacy for people with intellectual or developmental disabilities through personalized planning, support and care. Based on in-depth interviews with tenants,…
Lunsky, Yona; Hastings, Richard P.; Weiss, Jonathan A.; Palucka, Anna M.; Hutton, Sue; White, Karen
This study evaluated two community based interventions for parents of adults with autism spectrum disorder and other developmental disabilities. Parents in the mindfulness group reported significant reductions in psychological distress, while parents in the support and information group did not. Reduced levels of distress in the mindfulness group…
Brucker, Debra L.; Nord, Derek
People with intellectual or developmental disabilities (IDD) face higher levels of poverty than others, which can lead to concerns regarding areas of well-being, such as food security. Young adults with IDD who are, in many cases, transitioning from the system of educational, health care, and income supports of their youth into the adult world may…
Enabling People with Developmental Disabilities to Actively Perform Designated Occupational Activities according to Simple Instructions with a Nintendo Wii Remote Controller by Controlling Environmental Stimulation
Shih, Ching-Hsiang; Wang, Shu-Hui; Chang, Man-Ling; Shih, Ching-Hsiang
The latest researches have adopted software technology, turning the Nintendo Wii Remote Controller into a high performance three-dimensional object orientation detector. This study extended Wii Remote Controller functionality to assess whether two people with developmental disabilities would be able to actively perform designated simple…
A Three-Dimensional Object Orientation Detector Assisting People with Developmental Disabilities to Control Their Environmental Stimulation through Simple Occupational Activities with a Nintendo Wii Remote Controller
Shih, Ching-Hsiang; Chang, Man-Ling; Mohua, Zhang
This study evaluated whether two people with developmental disabilities would be able to actively perform simple occupational activities to control their preferred environmental stimulation using a Nintendo Wii Remote Controller with a newly developed three-dimensional object orientation detection program (TDOODP, i.e. a new software program,…
This study assessed whether two persons with developmental disabilities would be able to actively perform simple occupational activities by controlling their favorite environmental stimulation using battery-free wireless mice with a newly developed object location detection program (OLDP, i.e., a new software program turning a battery-free…
Shooshtari, Shahin; Brownell, Marni; Mills, Rosemary S. L.; Dik, Natalia; Yu, Dickie C. T.; Chateau, Dan; Burchill, Charles A.; Wetzel, Monika
Background: Little information exists on health of children with developmental disabilities (DDs) in the Canadian province of Manitoba. Method: The present authors linked 12 years of administrative data and compared health status, changes in health and access to health and social services between children with (n = 1877) and without (n = 5661) DDs…
Hall, Julie; Morgan, Robert L.; Salzberg, Charles L.
We investigated the effects of preference and degree of match on job performance of four 19 to 20-year-old young adults with developmental disabilities placed in community-based job conditions. We identified high-preference, high-matched and low-preference, low-matched job tasks using a video web-based assessment program. The job matching…
Kagohara, Debora M.; van der Meer, Larah; Ramdoss, Sathiyaprakash; O'Reilly, Mark F.; Lancioni, Giulio E.; Davis, Tonya N.; Rispoli, Mandy; Lang, Russell; Marschik, Peter B.; Sutherland, Dean; Green, Vanessa A.; Sigafoos, Jeff
We conducted a systematic review of studies that involved iPods[R], iPads[R], and related devices (e.g., iPhones[R]) in teaching programs for individuals with developmental disabilities. The search yielded 15 studies covering five domains: (a) academic, (b) communication, (c) employment, (d) leisure, and (e) transitioning across school settings.…
Hubbard, Kristie L.; Bandini, Linda G.; Folta, Sara C.; Wansink, Brian; Must, Aviva
Background: Evidenced-based health promotion programmes for youth with intellectual and developmental disabilities (I/DD) are notably absent. Barriers include a lack of understanding of how to adapt existing evidence-based programmes to their needs, maximize inclusion and support mutual goals of health and autonomy. Methods: We undertook a…
Erickson, Steven R.; Salgado, Teresa M.; Tian, Xi
People who have intellectual and developmental disabilities (IDD) often rely on caregivers to assist in the medication management process. The aim of this study was to learn from caregivers, who are either family or support staff, what major issues arise throughout the process of managing medication and how these might be addressed. Problems…
Shivers, Carolyn M.; Dykens, Elisabeth M.
Siblings of brothers or sisters with intellectual and developmental disabilities (IDD) are important but understudied family members. As many previous studies have relied on parent report of sibling outcomes, the use of sibling self-report is an important addition to the research. This study assessed the feelings of adolescent siblings toward…
Butterly, Felicity; Percy, Carol; Ward, Gillian
The aim of this study was to identify the outcomes expected and assessed by those providing service dogs to children with developmental disabilities. Seventeen registered service dog providers were invited to complete a mixed methods online survey. Five providers, who prepared dogs to work with a wide range of conditions and behaviours, mainly…
This study investigated the perspectives of 23 first-generation Asian American mothers of children with developmental disabilities. The intent was to explore the working relationships between the mothers and professionals in health care and special education in the United States. The participants in this study were from China, Taiwan, Vietnam,…
Lotan, M.; Moe-Nilssen, R.; Ljunggren, A. E.; Strand, L. I.
The 18 items' Non-Communicating Adult Pain Checklist (NCAPC) has been developed from the 27 items Non-Communicating Children Pain Checklist to better capture pain behavior of adults with Intellectual and Developmental Disabilities (IDD). As part of the NCAPC's measurement properties, internal consistency, reliability and sensitivity to pain have…
Greenway, Rosanne; McCollow, Meaghan; Hudson, Roxanne F.; Peck, Charles; Davis, Carol A.
The purpose of this study was to examine teacher perspectives about evidence-based practices (EBP) and decision-making for students with intellectual and developmental disabilities. Given the current EBP movement, our study sought to understand practitioner definitions and perspectives on EBP and decision-making. Interview data from nine special…
Investigating the Acquisition, Generalization, and Emergence of Untrained Verbal Operants for Mands Acquired Using the Picture Exchange Communication System in Adults with Severe Developmental Disabilities
Ziomek, M. M.; Rehfeldt, R. A.
This study compared the total amount of training time and total number of trial blocks for individuals with severe developmental disabilities to acquire mands under control of unconditioned establishing operations and mands under control of transitive conditioned establishing operations for manual sign and for the Picture Exchange Communication…
Thackeray, Lisa A.; Eatough, Virginia
Background: The predominant focus of extant literature exploring maternal experience of developmental disability has been stress, adaptation, efficacy of interventions and the burden of care. Most studies involve mothers of children, with scant attention given to what life is like later. This study qualitatively explores the experience of mothers…
Tait, Kathleen; Hussain, Rafat
Australian education service provision includes the delivery of quality educational programmes to rural and remote living children. However, according to their parents, many children with developmental disabilities (such as Down Syndrome and Autism Spectrum Disorders) who are living in rural country areas in New South Wales (NSW) still do not have…
Woodman, A. C.; Hauser-Cram, P.
Background: Parents of children with developmental disabilities (DD) face greater caregiving demands than parents of children without DD. There is considerable variability in parents' adjustment to raising a child with DD, however. In line with a strengths-based approach, this study explores coping strategies as potential mechanisms of resilience…
Shih, Ching-Hsiang; Chang, Man-Ling
The latest researches have adopted software technology, turning the Nintendo Wii Balance Board into a high performance standing location detector with a newly developed standing location detection program (SLDP). This study extended SLDP functionality to assess whether two people with developmental disabilities would be able to actively perform…
This study evaluated whether two people with developmental disabilities would be able to actively perform simple physical activities by controlling their favorite environmental stimulation using Nintendo Wii Balance Boards with a newly developed standing location detection program (SLDP, i.e., a new software program turning a Nintendo Wii Balance…
Enabling People with Developmental Disabilities to Actively Follow Simple Instructions and Perform Designated Physical Activities According to Simple Instructions with Nintendo Wii Balance Boards by Controlling Environmental Stimulation
Shih, Ching-Hsiang; Chung, Chiao-Chen; Shih, Ching-Tien; Chen, Ling-Che
The latest researches have adopted software technology turning the Nintendo Wii Balance Board into a high performance standing location detector. This study extended Wii Balance Board functionality to assess whether two people with developmental disabilities would be able to actively perform designated physical activities according to simple…
Stoesz, Brenda M.; Shooshtari, Shahin; Montgomery, Janine; Martin, Toby; Heinrichs, Dustin J.; Douglas, Joyce
Members of a knowledge translation and exchange (KTE) research team assessed the training needs of the teaching staff at a school for individuals with intellectual/developmental disabilities (IDD). In response to this need, KTE researchers retrieved peer-reviewed articles for training staff working with individuals with IDD who exhibit challenging…
Prevalence of Autism Spectrum Disorders: Autism and Developmental Disabilities Monitoring Network, United States, 2006. Morbidity and Mortality Weekly Report. Surveillance Summaries. Volume 58, Number SS-10
Problem/Condition: Autism spectrum disorders (ASDs) are a group of developmental disabilities characterized by atypical development in socialization, communication, and behavior. ASDs typically are apparent before age 3 years, with associated impairments affecting multiple areas of a person's life. Because no biologic marker exists for ASDs,…
Bacon, Ansley; Walker, Hill M.; Schwartz, Allen A.; O'Hara, David M.; Calkins, Carl; Wehmeyer, Michael L.
The public's increasing demands for greater accountability and a better return on investment from research supported by federal funding requires that organizations studying and solving problems in areas like health, education, disability, and child mental health document the impact of their work. Human service and educational professionals agree…
Hutchinson, Nancy L.; Pyle, Angela; Villeneuve, Michelle; Dods, Jennifer; Dalton, C. J.; Minnes, Patricia
Research has shown the benefits of parent involvement for student participation in education. Parent advocacy is a critical form of involvement by parents for children who are young, have disabilities, and are making transitions. Studies have classified forms of parent advocacy but have not illuminated the components necessary for effective parent…
Marks, Beth; Sisirak, Jasmina; Heller, Tamar
For people with disabilities, a good health and nutrition program can have life-changing results: more energy, increased knowledge, more confidence and self-esteem, and fewer serious health issues such as obesity, diabetes, and heart disease. This innovative, easy-to-implement curriculum is the perfect way to help adults build healthy…
Kreiner, Janice; Flexer, Robert
The purpose of this study was to develop and to evaluate the Preferences for Leisure Attributes (PLA) Assessment, a forced-choice computer software program for students with severe disabilities and communication difficulties. In order to determine content validity of the PLA Assessment, four experts in related fields assigned critical attributes…
Full Text Available Intellectual disability is the state of stopped or incomplete mental development which is featured by the impairment of abilities occurring at the development age and contributes to general level of intelligence, such as speech, cognitive, motor and social abilities. Disability can occur together or separately from other mental or physical disorders. 290 million people worldwide are estimated to have disabilities. Health is a core element in quality of life, but poverty, marginalization, limited access to primary health care, and lack of health promotion knowledge compromise health. Based on a research results in all nine areas of the family life quality (health, nancial status, family relations, support of other, support of services, influence of values, career, leisure and recreation, and community interaction community could influence with the permanent preventive measures on 6 concepts of family life quality: importance, possibility, initiative, achievement, stability and satisfaction. The research could be of great help for the development of comprehensive strategies for improvement of quality of life for families that have one or more members with intellectual disability. From inclusion we expect approach to individual and his/her family by the society, to take into account all their diversities, preservation and improvement of their personal physical and mental health, for optimal possible functioning, at all personal and social levels.
Matson, Johnny L., Ed.; Laud, Rinita B., Ed.; Matson, Michael L., Ed.
In the last few decades, the field of dual diagnosis as applied to those with intellectual disabilities has boasted a monumental surge in assessment devices and treatment approaches. These relatively recent advances include those in the development of behavior modification principles and procedures that have had a dramatic impact on services for…
Wong, Fu Keung Daniel; Poon, Ada
This study attempted to test the efficacy of a culturally attuned cognitive behavioural therapy (CBT) group for Chinese parents with children with developmental disabilities at risk of developing mental health problems in Melbourne, Australia. It was hypothesized that the participants in the experimental group would have less parenting stress and fewer dysfunctional attitudes, rules, and values, and better mental health and quality of life than the participants in the control group post-test. A total of 58 participants were randomly assigned into CBT and waiting list control groups. While ANCOVAs were used to compare the differences in General Health Questionnaires-12 (GHQ-12), Parenting Stress Index- Parent Domain (PSI-PD), Quality of Life Enjoyment and Satisfaction Questionnnaire-18 (Q-LES-Q-18) and Dysfunctional Attitude Scale (DAS) between participants of the experiemental and control groups, effect size statistics were performed to measure the magnitude of changes in the above instruments at post treatment. After ten weeks of treatment, the participants in the CBT group showed significant improvement in GHQ-12, Parenting Stress Index (PSI)-Parent Domain and Q-LES-Q-18 scores, but not in DAS scores. The effect size statistics revealed large differences in GHQ-12, PSI-Parent Domain and Q-LES-Q-18 scores between the participants in the experimental and control groups at post-treatment. When a GHQ score of 4 or greater was used as the recommended cut-off score, about 89% and 10% of the participants in the experimental and control groups, respectively, were classified as not at-risk cases at post-treatment. The initial findings suggest that a culturally attuned CBT group may help Chinese parents with children with developmental disabilities to reduce their parenting stress and improve their general mental health and quality of life.
Lucyshyn, Joseph M; Fossett, Brenda; Bakeman, Roger; Cheremshynski, Christy; Miller, Lynn; Lohrmann, Sharon; Binnendyk, Lauren; Khan, Sophia; Chinn, Stephen; Kwon, Samantha; Irvin, Larry K
The efficacy and consequential validity of an ecological approach to behavioral intervention with families of children with developmental disabilities was examined. The approach aimed to transform coercive into constructive parent-child interaction in family routines. Ten families participated, including 10 mothers and fathers and 10 children 3-8 years old with developmental disabilities. Thirty-six family routines were selected (2 to 4 per family). Dependent measures included child problem behavior, routine steps completed, and coercive and constructive parent-child interaction. For each family, a single case, multiple baseline design was employed with three phases: baseline, intervention, and follow-up. Visual analysis evaluated the functional relation between intervention and improvements in child behavior and routine participation. Nonparametric tests across families evaluated the statistical significance of these improvements. Sequential analyses within families and univariate analyses across families examined changes from baseline to intervention in the percentage and odds ratio of coercive and constructive parent-child interaction. Multiple baseline results documented functional or basic effects for 8 of 10 families. Nonparametric tests showed these changes to be significant. Follow-up showed durability at 11 to 24 months postintervention. Sequential analyses documented the transformation of coercive into constructive processes for 9 of 10 families. Univariate analyses across families showed significant improvements in 2- and 4-step coercive and constructive processes but not in odds ratio. Results offer evidence of the efficacy of the approach and consequential validity of the ecological unit of analysis, parent-child interaction in family routines. Future studies should improve efficiency, and outcomes for families experiencing family systems challenges.
Mitchell, Darcy B; Szczerepa, Alexandra; Hauser-Cram, Penny
Family cohesion relates to positive outcomes for both parents and children. Maintaining cohesion may be especially challenging for families of adolescents with developmental disabilities, yet this has been studied infrequently in this group. We investigated cohesion in these families, particularly with respect to partner stress, using the notion of the 'spillover effect' as a model. Adolescents with disabilities and their parents participated. Parents reported on teen adaptive and problem behaviours and on marital satisfaction, parenting stress, and family cohesion. The stress of one partner was tested as a predictor of the quality of family cohesion reported by the other. Adolescent behaviour problems were negative predictors of family cohesion in mothers, and marital satisfaction positively predicted cohesion for both parents. Above other factors, greater partner stress predicted poorer family cohesion for both fathers and mothers. Marital satisfaction acted as a suppressor of this relation. To improve the overall climate of families, care providers should take into consideration individual relationships, including the marital relationship. In addition, the possibility of spillover from one individual to another should be recognized as a factor in family functioning. Family-centred practices are likely to lead to greater feelings of cohesion and overall better individual and family well-being. Copyright © 2015 Elsevier Ltd. All rights reserved.
Szymanski, L S; Seppala, H T
This article describes features of Finland's specialized family care for children with disabilities, including professionalization and training of foster parents and the establishment of municipal employee-like status for them, long-term placements, and the preservation of relationships with biological families whenever possible. A case example of a 12-year-old child with mental retardation and autistic disorder who is in specialized care is included.
Full Text Available Despite increased awareness and concern about children with developmental disabilities wandering away from adult supervision, there is a paucity of research about elopement. This is the first study to examine and report the prevalence and correlates of elopement in a nationally representative sample of school-age children in the United States with an autism spectrum disorder (ASD and/or cognitive impairment. Data were obtained from the CDC's "Pathways" Survey, a follow-up telephone survey of the parents of 4,032 children with a developmental condition. 3,518 children that had ASD, intellectual disability (ID, and/or developmental delay (DD at the time of survey administration were included for analysis. Children were divided into three condition groups: ASD-only; ID/DD-only; ASD+ID/DD. Logistic regression analyses were used to compare the prevalence of elopement and rates of preventive measure use (barriers and/or electronic devices across condition groups, and to examine the clinical and demographic correlates of elopement. T-tests were also performed to compare scores on the Children's Social Behavior Questionnaire (CSBQ between wanderers and non-wanderers. Overall, 26.7% of children had reportedly eloped within the previous year, most commonly from public places. Children with ASD-only and ASD+ID/DD were more likely to have eloped than those with ID/DD-only. Across all groups, wanderers scored higher than non-wanderers on five out of six CSBQ subscales; they were more likely not to realize when there is danger, to have difficulty distinguishing between strangers and familiar people, to show sudden mood changes, to over-react to everything/everyone, to get angry quickly, to get lost easily, and to panic in new situations or if change occurs. Even after controlling for elopement history, parents of children in the ASD+ID/DD group were more likely than those in the other condition groups to report using physical or electronic measures to prevent
Zaal-Schuller, I H; de Vos, M A; Ewals, F V P M; van Goudoever, J B; Willems, D L
The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors influence their decisions. We searched MEDLINE, EMBASE, CINAHL and PsycINFO. The search was limited to articles in English or Dutch published between January 2004 and August 2014. We included qualitative and quantitative original studies that directly investigated the experiences of parents of children aged 0-18 years with severe developmental disorders for whom an end-of-life decision had been considered or made. We identified nine studies that met all inclusion criteria. Reportedly, parental involvement in end-of-life decision-making varied widely, ranging from having no involvement to being the sole decision-maker. Most parents preferred to actively share in the decision-making process regardless of their child's specific diagnosis or comorbidity. The main factors that influenced parents in their decision-making were: their strong urge to advocate for their child's best interests and to make the best (possible) decision. In addition, parents felt influenced by their child's visible suffering, remaining quality of life and the will they perceived in their child to survive. Most parents of children with severe developmental disorders wish to actively share in the end-of-life decision-making process. An important emerging factor in this process is the parents' feeling that they have to stand up for their child's interests in conversations with the medical team. Copyright © 2015 Elsevier Ltd. All rights reserved.
Tam, Cynthia; Schwellnus, Heidi; Eaton, Ceilidh; Hamdani, Yani; Lamont, Andrea; Chau, Tom
Children with severe physical disabilities often lack the physical skills to explore their environment independently, and to play with toys or musical instruments. The movement-to-music (MTM) system is an affordable computer system that allows children with limited movements to play and create music. The present study explored parents' experiences of using the MTM system with their children. A qualitative methodology employing in-depth interview techniques was used with six mothers and their children. The themes extracted from the data were organized under two main concepts of the International Classification of Functioning, Disability, and Health (ICF) (WHO, 2001) framework. The results showed that the MTM expanded horizons for the child along the ICF health dimensions and the MTM had a positive impact on ICF environmental determinants of health. The small sample size should be noted as a limitation of this study. Further research should be carried out with a larger sample of children with restricted mobility to obtain a better understanding of the impact of MTM technology on children's psychosocial development.
Chambers, Mark; Rehfeldt, Ruth Anne
The purpose of this study was to determine whether manual sign or the Picture Exchange Communication System (P.E.C.S.) (Frost and Bondy, 1994) would be more effective in teaching mand skills to adults with mental retardation in the severe and profound range. Four participants were taught to mand for four reinforcing items using both communication modalities, in an alternating treatments design. Three of four participants demonstrated criterion performance across all four mands using P.E.C.S. first. Two of those three participants later demonstrated criterion performance for the mands using manual sign. The fourth participant was removed from the study during training due to illness, but her progress indicated greater acquisition with P.E.C.S. Generalization probes conducted at participants' respective residences showed that three participants demonstrated generalization across settings using P.E.C.S., and two participants demonstrated generalization across settings using manual sign. Participants were also more likely to mand for reinforcing items not present using P.E.C.S. than using manual sign.
Gelsomini, Mirko; Garzotto, Franca; Montesano, Daniele; Occhiuto, Daniele
Our research aims at supporting existing therapies for children with intellectual and developmental disorders (IDD). The personal and social autonomy is the desired end state to be achieved to enable a smooth integration in the real world. We developed and tested a framework for storytelling and learning activities that exploits an immersive virtual reality viewer to interact with target users. We co-designed our system with experts from the medical sector, identifying features that allow patients to stay focused on exercises to perform. Our approach triggers a learning process for a seamless assimilation of common behavioral skills useful in every day's life. This paper highlights the technologic challenges in healthcare and discusses cutting-edge interaction paradigms.
Autism spectrum disorders (ASDs) are a group of developmental disabilities characterized by impairments in social interaction and communication and by restricted, repetitive, and stereotyped patterns of behavior. Symptoms typically are apparent before age 3 years. The complex nature of these disorders, coupled with a lack of biologic markers for diagnosis and changes in clinical definitions over time, creates challenges in monitoring the prevalence of ASDs. Accurate reporting of data is essential to understand the prevalence of ASDs in the population and can help direct research. 2008. The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system that estimates the prevalence of ASDs and describes other characteristics among children aged 8 years whose parents or guardians reside within 14 ADDM sites in the United States. ADDM does not rely on professional or family reporting of an existing ASD diagnosis or classification to ascertain case status. Instead, information is obtained from children's evaluation records to determine the presence of ASD symptoms at any time from birth through the end of the year when the child reaches age 8 years. ADDM focuses on children aged 8 years because a baseline study conducted by CDC demonstrated that this is the age of identified peak prevalence. A child is included as meeting the surveillance case definition for an ASD if he or she displays behaviors (as described on a comprehensive evaluation completed by a qualified professional) consistent with the American Psychiatric Association's Diagnostic and Statistical Manual-IV, Text Revision (DSM-IV-TR) diagnostic criteria for any of the following conditions: Autistic Disorder; Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS, including Atypical Autism); or Asperger Disorder. The first phase of the ADDM methodology involves screening and abstraction of comprehensive evaluations completed by professional providers at multiple
Lin, Elizabeth; Balogh, Robert; McGarry, Caitlin; Selick, Avra; Dobranowski, Kristin; Wilton, Andrew S; Lunsky, Yona
Describe the prevalence of substance-related and addictive disorders (SRAD) in adults with intellectual and developmental disabilities (IDD) and compare the sociodemographic and clinical characteristics of adults with IDD and SRAD to those with IDD or SRAD only. Population-based cohort study (the Health Care Access Research and Development Disabilities (H-CARDD) cohort). All legal residents of Ontario, Canada. 66 484 adults, aged 18-64, with IDD identified through linked provincial health and disability income benefits administrative data from fiscal year 2009. 96 589 adults, aged 18-64, with SRAD but without IDD drawn from the provincial health administrative data. Sociodemographic (age group, sex, neighbourhood income quintile, rurality) and clinical (psychiatric and chronic disease diagnoses, morbidity) characteristics. The prevalence of SRAD among adults with IDD was 6.4%, considerably higher than many previous reports and also higher than found for adults without IDD in Ontario (3.5%). Among those with both IDD and SRAD, the rate of psychiatric comorbidity was 78.8%, and the proportion with high or very high overall morbidity was 59.5%. The most common psychiatric comorbidities were anxiety disorders (67.6%), followed by affective (44.6%), psychotic (35.8%) and personality disorders (23.5%). These adults also tended to be younger and more likely to live in the poorest neighbourhoods compared with adults with IDD but no SRAD and adults with SRAD but no IDD. SRAD is a significant concern for adults with IDD. It is associated with high rates of psychiatric and other comorbidities, indicating that care coordination and system navigation may be important concerns. Attention should be paid to increasing the recognition of SRAD among individuals with IDD by both healthcare and social service providers and to improving staff skills in successfully engaging those with both IDD and SRAD. Published by the BMJ Publishing Group Limited. For permission to use (where not
Webster, Amanda A; Carter, Mark
One of the most commonly cited rationales for inclusive education is to enable the development of quality relationships with typically developing peers. Relatively few researchers have examined the features of the range of relationships that children with developmental disability form in inclusive school settings. Interviews were conducted with 25 children with developmental disability, aged 5 and 12 years, their 3 closest peers, and parents and teachers to examine 6 types of relationships. Behaviours associated with general friendship and acquaintance were the most commonly reported. Few dyads reported high rates of behaviour associated with special treatment, helping, ignoring, or intimate best friend relationships. The relationships of the majority of dyads were characterised by friendship or acceptance, but evidence of more intimate relationships was limited. An important direction for future research is the examination of ways to encourage more intimate relationships.
Valicenti-McDermott, Maria; Burrows, Bethany; Bernstein, Leora; Hottinger, Kathryn; Lawson, Katharine; Seijo, Rosa; Schechtman, Merryl; Shulman, Lisa; Shinnar, Shlomo
The use of complementary and alternative medicine by children with autism and the association of its use with child comorbid symptoms and parental stress was studied in an ethnically diverse population, in a cross-sectional study with structured interviews. The sample included 50 families of children with autism and 50 families of children with other developmental disabilities, matched by age/gender. Interview included the Complementary and Alternative Medicine Questionnaire, Gastrointestinal Questionnaire, Children's Sleep Habits Questionnaire, Aberrant Behavior Checklist, and Parenting Stress Index. In this ethnically diverse sample, the use of complementary and alternative medicine was significantly higher for the autism group. In the autism group, use was significantly related to child's irritability, hyperactivity, food allergies, and parental stress; in the developmental disabilities group, there was no association with child comorbid symptoms or parental stress. The results contribute information to health care providers about families of children with autism who are more likely to use complementary and alternative medicine.
Full Text Available The article analyses research data and scholarly approaches to the study: of problems of parents arising from their child’s illness; the emotional states of parents raising a child with developmental disabilities; stages of emotional experience related to the birth of a sick child. The family as an integral unit has to face various situations determined by the social impact of the child’s disease or impairment, as well as emotional and psychological reactions of the parents to it. Being aware of the psychological stages singled out in the grief theory helps professionals: to understand the reaction of the family of a child with developmental disabilities; realise when and how it is best to intervene, flexibly apply the theory of stages, and account for the specific characteristics of a particular family and individual reactions to such shocks.
Leung, Cynthia; Fan, Angel; Sanders, Matthew R
The study examined the effectiveness of Group Triple P, a Level 4 variant of the Triple P multilevel system of parenting support, with Chinese parents who had a preschool aged child with a developmental disability, using randomized controlled trial design. Participants (Intervention group: 42; Waitlist Control group: 39) completed measures on child behaviour, parental stress, dysfunctional discipline styles and parental conflict before and after program completion by the Intervention group. Intervention group participants also completed these same measures six months after program completion. Compared to the Waitlist Control group, parents receiving Group Triple P reported significantly lower levels of child behaviour problems, parental stress, dysfunctional discipline style and parental conflict scores. The Intervention group participants maintained their gains six months after program completion. The results provided promising evidence for the Level 4 Group Triple P as an effective intervention program for Chinese parents who have preschool aged children with developmental disabilities. Copyright © 2012 Elsevier Ltd. All rights reserved.
Medina-Mirapeix, Francesc; Lillo-Navarro, Carmen; Montilla-Herrador, Joaquina; Gacto-Sánchez, Mariano; Franco-Sierra, María Á; Escolar-Reina, Pilar
Many families have problems adhering to home exercise programs (HEP) for children with developmental disabilities. However, parental participation in HEP is known to have a positive effect on child-related outcome variables, as well as on parental functioning. This study examined whether the different behaviours of health professionals, and the behaviour and social characteristics of parents determine rates of parental adherence to both the frequency per week, and duration per session, of HEP for children with developmental disabilities attending paediatric services in early intervention centres. In this study, developmental disabilities include those caused by developmental delay or specific health conditions such as cerebral palsy, congenital illness, or others. Survey. Eighteen early intervention centers. Parents of children with developmental disabilities receiving HEP. A self-reported questionnaire was used to examine: whether frequency and duration of weekly exercise sessions was prescribed by physiotherapists; whether the child had received the HEP according to what was prescribed; and items related to the individual, social support, illnesses and the involvement of the health professional. Multiple logistic regression analyses examined their relative relevance. In this study 219 parents participated. The rate of adherence to the prescribed frequency and duration of the HEP was similar (61.4-57.2%). The probability of adherence to both components increased for parents who had a low perception of the existence of barriers for integrating the exercises into their daily routine (OR=2.62 and 4.83). Furthermore, other cognitive factors of parents had a variable influence. The involvement of the professional had a significant impact regarding the frequency of the HEP. Professional involvement increased the probability of exercises being followed accurately by adopting strategies such as: providing information about the progress and evolution of the exercises (OR=3
Lee, Mei-Hua; Bodfish, James W; Lewis, Mark H; Newell, Karl M
This study investigated the mean rate and time-dependent sequential organization of spontaneous eye blinks in adults with intellectual and developmental disability (IDD) and individuals from this group who were additionally categorized with stereotypic movement disorder (IDD+SMD). The mean blink rate was lower in the IDD+SMD group than the IDD group and both of these groups had a lower blink rate than a contrast group of healthy adults. In the IDD group the n to n+1 sequential organization over time of the eye-blink durations showed a stronger compensatory organization than the contrast group suggesting decreased complexity/dimensionality of eye-blink behavior. Very low blink rate (and thus insufficient time series data) precluded analysis of time-dependent sequential properties in the IDD+SMD group. These findings support the hypothesis that both IDD and SMD are associated with a reduction in the dimension and adaptability of movement behavior and that this may serve as a risk factor for the expression of abnormal movements.
Ryan, Cathryn T; Kramer, Jessica M; Cohn, Ellen S
The purpose of this study was to examine the role of the self-disclosure process in regard to connection development and relationship quality in peer mentoring relationships between transition-age youth (ages 15-20) and young adults (ages 18-36) with intellectual and/or developmental disabilities. Self-disclosure is defined as "the disclosure of inner feelings and experiences to another person" that "fosters liking, caring, and trust, thereby facilitating the deepening of close relationships" ( Reis & Shaver, 1988 , p. 372). Nine peer mentoring dyads with varied interpersonal connections were purposefully selected from a larger intervention study. Recorded mentoring conversations were analyzed for self-disclosure content and peer mentor response. The findings demonstrated trends related to connection development and differences across degree of connection. In relationships with stronger connections, there was a higher quantity of self-disclosure and more frequent disclosure of emotions, and peer mentors responded more frequently with advice and reciprocated self-disclosure. Implications of findings for promoting higher-quality peer mentoring relationships are discussed.
Kagohara, Debora M; Sigafoos, Jeff; Achmadi, Donna; van der Meer, Larah; O'Reilly, Mark F; Lancioni, Giulio E
We evaluated an intervention procedure for teaching three students with developmental disabilities to independently operate a portable multimedia device (i.e., an iPod Touch(®)) to listen to music. The intervention procedure included the use of video modeling, which was presented on the same iPod Touch(®) that the students were taught to operate to listen to music. Four phases (i.e., baseline, intervention, fading, and follow-up) were arranged in accordance with a delayed multiple-probe across participants design. During baseline, the students performed from 25 to 62.5% of the task analyzed steps correctly. With intervention, all three students correctly performed 80-100% of the steps and maintained this level of performance when video modeling was removed and during follow-up. The findings suggest that the video modeling procedure was effective for teaching the students to independently operate a portable multimedia device to access age-appropriate leisure content. Copyright © 2011 Elsevier Ltd. All rights reserved.
Bergmann, Thomas; Sappok, Tanja; Diefenbacher, Albert; Dames, Sibylle; Heinrich, Manuel; Ziegler, Matthias; Dziobek, Isabel
The MUSAD was developed as a diagnostic observational instrument in an interactional music framework. It is based on the ICD-10/DSM-5 criteria for autism spectrum disorder (ASD) and was designed to assess adults on a lower level of functioning, including individuals with severe language impairments. This study aimed to evaluate the psychometric properties of the newly developed instrument. Calculations were based on a consecutive clinical sample of N=76 adults with intellectual and developmental disabilities (IDD) suspected of ASD. Objectivity, test-retest reliability, and construct validity were calculated and a confirmatory factor analysis was applied to verify a reduced and optimized test version. The structural model showed a good fit, while internal consistency of the subscales was excellent (ω>.92). Item difficulties ranged between .04≤pi≤.82 and item-total correlation from .21 to .85. Objectivity was assessed by comparing the scorings of two external raters based on a subsample of n=12; interrater agreement was .71 (ICC 2, 1). Reliability was calculated for four test repetitions: the average ICC (3, 1) was .69. Convergent ASD measures correlated significantly with the MUSAD, while the discriminant Modified Overt Aggression Scale (MOAS) showed no significant overlap. Confirmation of factorial structure and acceptable psychometric properties suggest that the MUSAD is a promising new instrument for diagnosing ASD in adults with IDD. Copyright © 2015 Elsevier Ltd. All rights reserved.
Watson, Linda R; Patten, Elena; Baranek, Grace T; Poe, Michele; Boyd, Brian A; Freuler, Ashley; Lorenzi, Jill
To examine patterns of sensory responsiveness (i.e., hyperresponsiveness, hyporesponsiveness, and sensory seeking) as factors that may account for variability in social-communicative symptoms of autism and variability in language, social, and communication skill development in children with autism or other developmental disabilities (DDs). Children with autistic disorder (AD; n = 72, mean age = 52.3 months) and other DDs (n = 44, mean age = 48.1 months) participated in a protocol measuring sensory response patterns; social-communicative symptoms of autism; and language, social, and communication skills. Hyporesponsiveness was positively associated with social-communicative symptom severity, with no significant group difference in the association. Hyperresponsiveness was not significantly associated with social-communicative symptom severity. A group difference emerged for sensory seeking and social-communicative symptom severity, with a positive association for the AD group only. For the 2 groups of children combined, hyporesponsiveness was negatively associated with language skills and social adaptive skills. Sensory seeking also was negatively associated with language skills. These associations did not differ between the 2 groups. Aberrant sensory processing may play an important role in the pathogenesis of autism and other DDs as well as in the rate of acquisition of language, social, and communication skills.
Naseer, Muhammad Imran; Rasool, Mahmood; Jan, Mohammed M; Chaudhary, Adeel G; Pushparaj, Peter Natesan; Abuzenadah, Adel M; Al-Qahtani, Mohammad H
PGAP2 (Post-GPI Attachment to Proteins 2) gene is involved in lipid remodeling steps of Glycosylphosphatidylinositol (GPI)-anchor maturation. At the surface of the cell this gene is required for proper expression of GPI-anchored proteins. Hyperphosphatasia with mental retardation syndrome-3 is an autosomal recessive disorder usually characterized by severe mental retardation. Mutations in the PGAP2 gene cause hyperphosphatasia mental retardation syndrome-3. We have identified a large consanguineous family from Saudi origin segregating developmental delay, intellectual disability, epilepsy and microcephaly. Whole exome sequencing with 100× coverage was performed on two affected siblings of the family. Data analysis in the patient revealed a novel missense mutation c.191C>T in PGAP2 gene resulting in Alanine to Valine substitution (Ala64Val). The mutation was reconfirmed and validated by subsequent Sanger sequencing method. The mutation was ruled out in 100 unrelated healthy controls. We suggest that this pathogenic mutation disrupts the proper function of the gene proteins resulting in the disease state. Copyright © 2016 Elsevier B.V. All rights reserved.
Tanya Marie Evans
Full Text Available Math disability (MD is a neurodevelopmental disorder affecting mathematical abilities. Here we propose a new explanatory account of MD, the Procedural Deficit Hypothesis (PDH, that may further our understanding of the disorder. According to the PDH of MD, abnormalities of brain structures underlying the procedural memory system can lead to difficulties with math skills learned in this system, as well as problems with other functions that depend on these brain structures. This brain-based account is motivated in part by the high comorbidity between MD and language disorders such as dyslexia that may be partly explained by the PDH, as well as by the likelihood that learning automatized math skills should depend on procedural memory. Here we first lay out the PDH of MD, and then present specific predictions, examining the existing literature for each while pointing out weaknesses and gaps to be addressed by future research. Although we do not claim that the PDH is likely to fully explain MD, we do suggest that the hypothesis could have substantial explanatory power, and that it provides a useful theoretical framework that may advance our understanding of the disorder.
I. De Toma
Full Text Available One of the most challenging questions in neuroscience is to dissect how learning and memory, the foundational pillars of cognition, are grounded in stable, yet plastic, gene expression states. All known epigenetic mechanisms such as DNA methylation and hydroxymethylation, histone modifications, chromatin remodelling, and noncoding RNAs regulate brain gene expression, both during neurodevelopment and in the adult brain in processes related to cognition. On the other hand, alterations in the various components of the epigenetic machinery have been linked to well-known causes of intellectual disability disorders (IDDs. Two examples are Down Syndrome (DS and Fragile X Syndrome (FXS, where global and local epigenetic alterations lead to impairments in synaptic plasticity, memory, and learning. Since epigenetic modifications are reversible, it is theoretically possible to use epigenetic drugs as cognitive enhancers for the treatment of IDDs. Epigenetic treatments act in a context specific manner, targeting different regions based on cell and state specific chromatin accessibility, facilitating the establishment of the lost balance. Here, we discuss epigenetic studies of IDDs, focusing on DS and FXS, and the use of epidrugs in combinatorial therapies for IDDs.
Toma, I De; Gil, L Manubens; Ossowski, S; Dierssen, M
One of the most challenging questions in neuroscience is to dissect how learning and memory, the foundational pillars of cognition, are grounded in stable, yet plastic, gene expression states. All known epigenetic mechanisms such as DNA methylation and hydroxymethylation, histone modifications, chromatin remodelling, and noncoding RNAs regulate brain gene expression, both during neurodevelopment and in the adult brain in processes related to cognition. On the other hand, alterations in the various components of the epigenetic machinery have been linked to well-known causes of intellectual disability disorders (IDDs). Two examples are Down Syndrome (DS) and Fragile X Syndrome (FXS), where global and local epigenetic alterations lead to impairments in synaptic plasticity, memory, and learning. Since epigenetic modifications are reversible, it is theoretically possible to use epigenetic drugs as cognitive enhancers for the treatment of IDDs. Epigenetic treatments act in a context specific manner, targeting different regions based on cell and state specific chromatin accessibility, facilitating the establishment of the lost balance. Here, we discuss epigenetic studies of IDDs, focusing on DS and FXS, and the use of epidrugs in combinatorial therapies for IDDs.
Irene Hierro Zorrilla
Full Text Available The San Martín Scale is an instrument used to measure the quality of life of people with significant disabilities with adequate levels reliability and validity. In 2012, the San Martín Scale was administered to 85 adults with intellectual disabilities who were provided supports at Obra San Martin Foundation (Santander. In this article, we describe the results obtained at the mesosystem level, an example at the microsystem level, and future areas of work identified from the results.
Cantwell, Joanne; Muldoon, Orla T; Gallagher, Stephen
To date, much of the research linking the stress of caring for children with developmental disabilities (e.g. Autism & Down syndrome) with parental health outcomes have tended to concentrate on mental health with less attention paid to the physical health consequences. Thus, this study sought to explore the psychosocial predictors of poor physical health in these caring parents. One hundred and sixty-seven parents (109 caregivers and 58 control parents) completed measures of stress, child problem behaviours, social support, mastery and physical health. Parents of children with developmental disabilities had poorer physical health compared to control parents. Stress and mastery, but not social support and problem behaviours, were significant predictors of poor physical health within caring parents for children with developmental disabilities. However, the association between mastery and physical health was mediated by perceived stress such that those parents who were higher on mastery reported less stress and better physical health; furthermore, the association between stress and physical health was moderated by social support; those parents high on social support and low in stress had better physical health. These results indicate that the paths between psychosocial factors and poor physical health in the caring parents are working synergistically rather than in isolation. They also underscore the importance of providing multi-component interventions that offer a variety of psychosocial resources to meet the precise needs of the parents. Copyright © 2014 Elsevier Ltd. All rights reserved.
Werner, Shirli; Shulman, Cory
Studies have shown that stigmatization is linked to lower quality of life; however, only scant research has examined the association between family caregivers' internalization of stigma (affiliate stigma) and their subjective quality of life (subjective well-being, SWB). Furthermore, studies have rarely examined this association via comparison between caregivers of individuals with different developmental disabilities in addition to examining the influence of psychosocial protective factors. These were the aims of the current study. Family caregivers (N=176) of individuals with autism spectrum disorders (ASD), intellectual disabilities (ID), and physical disabilities (PD) completed a self-report structured questionnaire including scales measuring SWB, affiliate stigma, burden, positive meaning in caregiving, social support and self-esteem. Results showed that SWB of family caregivers was below the average normative level and especially low for caregivers of individuals with ASD. The strongest predictors of SWB were caregivers' self-esteem, social support, positive meaning in caregiving, and affiliate stigma. Furthermore, an interaction was found between affiliate stigma and diagnosis, showing that among caregivers of individuals with ASD, greater levels of stigma were associated with lower ratings of SWB, whereas such an association was not found among caregivers of individuals with ID or PD. Findings from this study point to the importance of supporting caregivers across the life-span in order to decrease stigma, improve social support and self-esteem and improve SWB. Further, findings point to the need to respond differentially to the various developmental disabilities. Copyright © 2013 Elsevier Ltd. All rights reserved.
Kato, Hidekazu; Miyake, Fuyu; Shimbo, Hiroko; Ohya, Makoto; Sugawara, Hidenori; Aida, Noriko; Anzai, Rie; Takagi, Mariko; Okuda, Mitsuko; Takano, Kyoko; Wada, Takahito; Iai, Mizue; Yamashita, Sumimasa; Osaka, Hitoshi
Creatine transporter deficiency (CTD) is an example of X-linked intellectual disability syndromes, caused by mutations in SLC6A8 on Xq28. Although this is the second most frequent genetic cause of intellectual disabilities in Europe or America after Fragile X syndrome, information on the morbidity of this disease is limited in Japan. Using the HPLC screening method we have established recently, we examined samples of urine of 105 patients (73 males and 32 females) with developmental disabilities at our medical center. And we have found a family with three ID boys with a novel missense mutation in SLC6A8. This is the second report of a Japanese family case of CTD. A systematic diagnostic system of this syndrome should be established in Japan to enable us to estimate its frequency and treatment. Copyright © 2013 The Japanese Society of Child Neurology. Published by Elsevier B.V. All rights reserved.
Having children with developmental disabilities (DDs) requires a high level of caregiving responsibilities, and existing studies support that mothers of children with DDs experience high levels of maternal stress as well as poor sleep and well-being. Given the fact that the number of children with DDs has increased, an up-to-date literature review is necessary to identify factors associated with maternal stress, sleep, and well-being. In addition, understanding these factors and their relationships may provide better strategies in designing effective interventions that can reduce the burden in mothers of children with DDs. This review summarized 28 scientific research papers that examined maternal stress, sleep, and well-being in mothers of children with DDs in past 12 years. The study findings indicate that mothers of children with DDs experience higher levels of stress than mothers of typically developing children, and it remains high over time. In addition, these mothers often encounter depressive symptoms as well as poor sleep quality. The study results also reveal that there is a bidirectional relationship between maternal stress and depressive symptoms as well as between poor sleep quality and depressive symptoms. For example, higher stress mothers experienced more depressive symptoms. Mothers of children with DDs with poor sleep quality are significantly associated with more depressive symptoms. Child behavior problems were significantly associated with both maternal stress and depressive symptoms, but cautious interpretation is warranted due to the shared variance between child behavior problems, maternal stress, and depressive symptoms. Methodological guidelines for future research involve the use of reliable and valid instruments for the measurement of child behavior problems, maternal stress, and sleep. Recommendations for future research are included. Copyright © 2013 Elsevier Ltd. All rights reserved.
Kibby, Michelle Y
Prior research has put forth at least four possible contributors to the verbal short-term memory (VSTM) deficit in children with developmental reading disabilities (RD): poor phonological awareness that affects phonological coding into VSTM, a less effective phonological store, slow articulation rate, and fewer/poorer quality long-term memory (LTM) representations. This project is among the first to test the four suppositions in one study. Participants included 18 children with RD and 18 controls. VSTM was assessed using Baddeley's model of the phonological loop. Findings suggest all four suppositions are correct, depending upon the type of material utilized. Children with RD performed comparably to controls in VSTM for common words but worse for less frequent words and nonwords. Furthermore, only articulation rate predicted VSTM for common words, whereas Verbal IQ and articulation rate predicted VSTM for less frequent words, and phonological awareness and articulation rate predicted VSTM for nonwords. Overall, findings suggest that the mechanism(s) used to code and store items by their meaning is intact in RD, and the deficit in VSTM for less frequent words may be a result of fewer/poorer quality LTM representations for these words. In contrast, phonological awareness and the phonological store are impaired, affecting VSTM for items that are coded phonetically. Slow articulation rate likely affects VSTM for most material when present. When assessing reading performance, VSTM predicted decoding skill but not word identification after controlling Verbal IQ and phonological awareness. Thus, VSTM likely contributes to reading ability when words are novel and must be decoded.
Ptomey, Lauren T; Sullivan, Debra K; Lee, Jaehoon; Goetz, Jeannine R; Gibson, Cheryl; Donnelly, Joseph E
Adolescents with intellectual and developmental disabilities (IDD) are at an increased risk of obesity, with up to 55% considered overweight and 31% obese. However, there has been minimal research on weight management strategies for adolescents with IDD. The purpose of this study was to compare the effectiveness of two weight loss diets, an enhanced Stop Light Diet (eSLD) and a conventional diet (CD), and to determine the feasibility of using tablet computers as a weight loss tool in overweight and obese adolescents with IDD. A 2-month pilot intervention was conducted. All participants were randomized to the eSLD or CD and were given a tablet computer that they used to track daily dietary intake and physical activity. Participants and parents met weekly with a registered dietitian nutritionist via video chat on the tablet computer to receive diet and physical activity feedback and education. Twenty participants (45% female, aged 14.9±2.2 years) were randomized and completed the intervention. Participants in both diets were able to lose weight, and there were no significant differences between the eSLD and CD (-3.89±2.66 kg vs -2.22±1.37 kg). Participants were able to use the tablet computer to track their dietary intake 83.4%±21.3% of possible days and to attend 80.0% of the video chat meetings. Both dietary interventions appear to promote weight loss in adolescents with IDD, and the use of tablet computers appears to be a feasible tool to deliver a weight loss intervention in adolescents with IDD. Copyright © 2015 Academy of Nutrition and Dietetics. Published by Elsevier Inc. All rights reserved.
Donnelly, J E; Ptomey, L T; Goetz, J R; Sullivan, D K; Gibson, C A; Greene, J L; Lee, R H; Mayo, M S; Honas, J J; Washburn, R A
Adolescents with intellectual and developmental disabilities (IDD) are an underserved group in need of weight management. However, information regarding effective weight management for this group is limited, and is based primarily on results from small, non-powered, non-randomized trials that were not conducted in accordance with current weight management guidelines. Additionally, the comparative effectiveness of emerging dietary approaches, such as portion-controlled meals (PCMs) or program delivery strategies such as video chat using tablet computers have not been evaluated. Therefore, we will conduct an 18month trial to compare weight loss (6months) and maintenance (7-18months) in 123 overweight/obese adolescents with mild to moderate IDD, and a parent, randomized to a weight management intervention delivered remotely using FaceTime™ on an iPad using either a conventional meal plan diet (RD/CD) or a Stop Light diet enhanced with PCMs (RD/eSLD), or conventional diet delivered during face-to-face home visits (FTF/CD). This design will provide an adequately powered comparison of both diet (CD vs. eSLD) and delivery strategy (FTF vs. RD). Exploratory analyses will examine the influence of behavioral session attendance, compliance with recommendations for diet (energy intake), physical activity (min/day), self-monitoring of diet and physical activity, medications, and parental variables including diet quality, physical activity, baseline weight, weight change, and beliefs and attitudes regarding diet and physical activity on both weight loss and maintenance. We will also complete a cost and contingent valuation analysis to compare costs between RD and FTF delivery. Copyright © 2016. Published by Elsevier Inc.
Kramer, Jessica M; Helfrich, Christine; Levin, Melissa; Hwang, I-Ting; Samuel, Preethy S; Carrellas, Ann; Schwartz, Ariel E; Goeva, Aleksandrina; Kolaczyk, Eric D
Project TEAM (Teens making Environment and Activity Modifications) teaches transition-age young people with developmental disabilities, including those with co-occurring intellectual or cognitive disabilities, to identify and resolve environmental barriers to participation. We examined its effects on young people's attainment of participation goals, knowledge, problem-solving, self-determination, and self-efficacy. We used a quasi-experimental, repeated measures design (initial, outcome, 6-week follow-up) with two groups: (1) Project TEAM (28 males, 19 females; mean age 17y 6mo); and (2) goal-setting comparison (21 males, 14 females; mean age 17y 6mo). A matched convenience sample was recruited in two US states. Attainment of participation goals and goal attainment scaling (GAS) T scores were compared at outcome. Differences between groups for all other outcomes were analyzed using linear mixed effects models. At outcome, Project TEAM participants demonstrated greater knowledge (estimated mean difference: 1.82; confidence interval [CI]: 0.90, 2.74) and ability to apply knowledge during participation (GAS: t=4.21; CI: 5.21, 14.57) compared to goal-setting. While both groups achieved significant improvements in knowledge, problem-solving, and self-determination, increases in parent reported self-determination remained at 6-week follow-up only for Project TEAM (estimated mean difference: 4.65; CI: 1.32, 7.98). Significantly more Project TEAM participants attained their participation goals by follow-up (Project TEAM=97.6%, goal-setting=77.1%, p=0.009). Both approaches support attainment of participation goals. Although inconclusive, Project TEAM may uniquely support young people with developmental disabilities to act in a self-determined manner and apply an environmental problem-solving approach over time. Individualized goal-setting, alone or during Project TEAM (Teens making Environment and Activity Modifications) appears to support attainment of participation
Song, Jieun; Mailick, Marsha R; Greenberg, Jan S
Parents of sons and daughters with disabilities have ongoing financial burdens and vulnerability due to the demands of caregiving responsibilities and their related direct and indirect costs. This study aims to investigate whether midlife and older parents of individuals with a mental health problem or a developmental disability were particularly vulnerable to the impact of the recession. The data were drawn from Midlife in the United States (MIDUS), a longitudinal survey of a national probability sample in the United States, Waves II (2004-2006) and III (2013-2014; 84 parents of individuals with a mental health problem, 98 parents of individuals with a developmental disability, and 2,029 parents of individuals without any conditions as a comparison group). The findings suggest that the midlife and older parents whose son or daughter had a mental health problem experienced more recession impacts than comparison parents, even after controlling prerecession financial status and sociodemographic characteristics. The results indicate the need for policies that provide effective financial support and reduce restrictions on health service access in order to relieve the financial burden experienced by midlife and older parents of individuals with a mental health problem. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: firstname.lastname@example.org.
Reindl, Marie-Sol; Waltz, Mitzi; Schippers, Alice
This study focused on parent-initiated supported living schemes in the South of the Netherlands and the ability of these living schemes to enhance participation, choice, autonomy and self-advocacy for people with intellectual or developmental disabilities through personalized planning, support and care. Based on in-depth interviews with tenants, parents and caregivers, findings included that parent-initiated supported housing schemes made steps towards stimulating self-advocacy and autonomy for tenants. However, overprotective and paternalistic attitudes expressed by a significant number of parents, as well as structural constraints affecting the living schemes, created obstacles to tenants' personal development. The study calls for consideration of interdependence as a model for the relationship of parents and adult offspring with disabilities. The benefits and tensions inherent within this relationship must be taken into consideration during inclusive community building. © The Author(s) 2016.
Fisch, Clifford B.; Fisch, Martin L.
The Stanley S. Lamm Institute for Developmental Disabilities of The Long Island College Hospital, in conjunction with Micro-Med Systems has developed a low cost micro-computer based information system (ADDOP TRS) which monitors quality of care in outpatient settings rendering services to the developmentally disabled population. The process of conversion from paper record keeping systems to direct key-to-disk data capture at the point of service delivery is described. Data elements of the information system including identifying patient information, coded and English-grammar entry procedures for tracking elements of service as well as their delivery status are described. Project evaluation criteria are defined including improved quality of care, improved productivity for clerical and professional staff and enhanced decision making capability. These criteria are achieved in a cost effective manner as a function of more efficient information flow. Administrative applications including staff/budgeting procedures, submissions for third party reimbursement and case reporting to utilization review committees are considered.