Siegel, Martin A.; Clapp, Elizabeth Jane
The 2 year project (July 1, 1978 through June 30, 1980) sought to determine the viability, attractiveness, and effectiveness of computer based instruction with approximately 225 severely and profoundly mentally handicapped and developmentally disabled institutionalized children and adults. Over 100 instructional formats were developed by staff…
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 as either inducing emotional stress (i.e., guilt, sadness, fear and worry, anger and frustration, and uncertainty) or relief. Parental appraisals of responses to placement by children, extended family, and friends were identified as factors affecting the parents' adaptation to placement. The primary coping methods used by parents to decrease emotional stress and increase relief consisted of reappraisals regarding the necessity of placement, involvement in the child's life, psychotherapy, and the passage of time.
Lancioni, Giulio E.; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff; Pichierri, Sabrina; Oliva, Doretta
Many persons with developmental and physical disabilities experience drooling (i.e., loss of saliva from the mouth). Technology was recently developed to help two of these persons reduce the negative effects of drooling by increasing mouth-wiping responses. This study upgraded our initial approach and tested it with the two persons who we…
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
... Videos Get to Know NICHD Podcasts and Audio Social Media Join NICHD Listservs About NICHD Organization Office of ... IDDs; and the effect of individual factors on social interactions, behavior, and emotions. Common Name Intellectual and developmental disabilities (IDDs) Medical ...
... an autism spectrum disorder. Low birthweight , premature birth, multiple birth, and infections during pregnancy are associated with an increased risk for many developmental disabilities. Untreated newborn jaundice (high levels of bilirubin in ...
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
van der Putten, A; Vlaskamp, C; Reynders, K; Nakken, H
Objective: To determine the effect of functional movement activities within the MOVE ( Mobility Opportunities Via Education) curriculum on the independence of children with profound intellectual and multiple disabilities. Subjects: Forty-four children with profound intellectual and multiple
Panzer, Barry M.; And Others
Children who are developmentally disabled are more often handicapped by a lack of social skills than by intellectual limitations. The pilot program described here improved the psychosocial functioning of such children by involving them in one-to-one relationships with caring adults. (Author)
van Alphen, Helena; Bossink, Leontien; Schalen, Gertruud Henrike; van der Putten, Annette
Physical activity is beneficial, also for people who are characterized by profound intellectual and severe motor disabilities. However, these people are totally dependent on others to participate in physical activities. To date, promoting physical activity in people with these profound disabilities
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…
Ten Brug, Annet; Van der Putten, Annette A.J.; Penne, Anneleen; Maes, Bea; Vlaskamp, Carla
Multisensory storytelling (MSST) is a storytelling method developed for people with profound intellectual and multiple disabilities (PIMD). The developers of MSST have established specific guidelines aimed at increasing the listener's attention. Whether, and to what extent, these guidelines indeed
Forster, S; Iacono, T
The interactions experienced by adults with profound intellectual and multiple disabilities (PIMD) with their disability support workers (DSWs) may have a large impact on life quality. However, defining good-quality interaction has presented challenges for this group. It has been suggested that in typically developing infant-mother dyads, the presence of affect attunement may be an indicator of quality. Affect attunement refers to the recasting of one person's affect by another with emphasis. The presence and nature of affect attunement in interactions between 21 pairs of adults with PIMD and their DSWs were explored in this study. Natural interactions were videorecorded for 21 pairs of adults with PIMD and their DSWs. The recordings were analysed for the presence and nature of affect attunement incidents, and analysed using descriptive statistics. Affect attunement incidents were observed in 16 of the pairs. The DSW's attunement behaviour was in response to subtle, short duration behaviours of participants with PIMD. These brief moments of connection may be a basis of good-quality interaction. © 2013 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.
Neerinckx, Heleen; Maes, Bea
Background: In spite of the profound cognitive and physical problems, people with profound intellectual and multiple disabilities (PIMD) are able to develop joint attention behaviours (JAB) and benefit from positive interactions. Aims: To investigate which context factors influence the JAB of people with PIMD. Method: Based on video recordings of…
Vos, Pieter; De Cock, Paul; Munde, Vera; Neerinckx, Heleen; Petry, Katja; Van den Noortgate, Wim; Maes, Bea
Although it is shown that attention plays an important role both in the onset and in the regulation of emotions in people without disabilities there is no information about how attention is related to emotions in people with severe or profound intellectual disability (ID). Therefore, in our study,
Young, Hannah; Hogg, James; Garrard, Brenda
Background: People with intellectual disabilities are thought to have a reduced capacity for understanding death. Drawing on cognitive theory, researchers have suggested that those with profound intellectual and multiple disabilities mainly perceive loss as a mismatch between past and present experiences. However, very little research has…
Kamstra, A.; van der Putten, A. A. J.; Vlaskamp, C.
Background: Persons with less severe disabilities are able to express their needs and show initiatives in social contacts, persons with profound intellectual and multiple disabilities (PIMD), however, depend on others for this. This study analysed the structure of informal networks of persons with PIMD. Materials and Methods: Data concerning the…
Poppes, P; van der Putten, A J J; Post, W J; Vlaskamp, C
Several factors that correlate with the onset or continuation of challenging behaviour are mentioned in research. These are factors related to persons with ID, but also to direct support professionals and the context. Although many of these factors seem to affect the onset or continuation of challenging behaviour in people with ID in general, results are often inconclusive and have little focus on people with profound intellectual and multiple disabilities (PIMD). The present study aimed to assess the extent to which known factors related to challenging behaviour are also applicable to a group of 198 people with PIMD. To determine which factors were associated with challenging behaviour, univariate analyses on associations between known risk factors and challenging behaviour were conducted. The associated factors were then subject to a regression analysis to determine the extent to which they explain the prevalence of challenging behaviour and can thus be seen as factors associated with challenging behaviour. The results show that, in particular, factors concerning the personal characteristics of people with PIMD, such as sleeping problems and auditory problems, were related to the variance in mean frequency of challenging behaviour. Only one factor related to the direct support professionals was found: when these professionals had been offered training on the subject of challenging behaviour in people with intellectual disabilities in general, they identified significantly more withdrawn behaviour. We found no contextual factors related to challenging behaviour. These findings are generally consistent with findings reported in other studies, especially concerning the personal characteristics of people with PIMD. Further research should focus on the effects of providing safe auditory environments and appropriate sleep schedules for people with PIMD on the occurrence of challenging behaviour. © 2016 MENCAP and International Association of the Scientific Study of
Sizemore, C. J.
This publication describes the programs and services offered through the Office of Developmental Disabilities of the Illinois Department of Human Services. Introductory information includes an overview of supports and service, a definition of "developmental disability," and a guide to the publication. This is followed by a description of…
Savasi, I; Spitzer, R F; Allen, L M; Ornstein, M P
The approach to menstrual suppression for adolescents with developmental disabilities has evolved considerably over the years due to changing philosophies and evolving treatment options. We review the medical management options available for menstrual suppression with a focus on the needs and treatment of adolescents with developmental disabilities.
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.
... and Prevention, Developmental Disabilities U.S. National Library of Medicine, Developmental Disabilities Last Updated: October 2017 This article was contributed by: familydoctor.org editorial staff Categories: ...
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.
Munde, V; Vlaskamp, C
When providing activities to individuals with profound intellectual and multiple disabilities (PIMD), direct support persons (DSPs) often face questions that are, among other things, related to the alertness of the person with PIMD. While previous studies have revealed that stimulation might have a greater impact on levels of alertness than the internal conditions of the individual, they have also emphasized the importance of interaction in order to influence the level of alertness. Because the initiation of this interaction has been described as one of its core components, the present study has focused on the relationship between the stimuli presented, the initiation of the activity (by the person with PIMD or the DSP), and the level of alertness of the person with PIMD. Videotapes of the one-to-one interactions of 24 individuals with PIMD and their DSPs in multisensory environments have been scored using the Alertness Observation List. In a sequential analysis, the percentages of stimuli presented were related to the percentages of initiation. Furthermore, two other analyses focused on the relationship between the level of alertness and the preceding and subsequent percentages of initiation respectively. The results show that high percentages of the activities are initiated by the DSPs. In addition, activities that were initiated by the individual with PIMD were preceded and followed by higher percentages of alert behaviour than those initiated by the DSP. Outcomes differed for the different types of stimuli. These results have striking implications for the lives of individuals with PIMD. It is quite possible that DSPs often act too quickly, whereas they would be better off waiting for a reaction on the part of their client. In general, DSPs need to find a balance between being passive themselves and promoting in the individual with PIMD a state of being as active and alert as possible. © 2014 MENCAP and International Association of the Scientific Study of
Forster, Sheridan Lee
The quality of life of people with profound intellectual and multiple disabilities (PIMD) is affected by many factors, including health status, involvement in activities, and social networks; but most critical is the quality of interaction experienced by the person on a daily basis. For many people with PIMD, most of whom reside in residential services where they receive 24-hour support, the primary people for interaction are paid disability support workers (DSWs). Quality interaction is ...
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.
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
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
Penne, A.; ten Brug, A.; Munde, V.; van der Putten, A.; Vlaskamp, C.; Maes, B.
Background Multisensory storytelling (MSST) is an individualised activity for people with profound intellectual and multiple disabilities (PIMD) in which a story is being told with an emphasis on sensory experiences and social interaction. MSST is a promising approach, but needs more empirical
Penne, A.; ten Brug, A.; Munde, V.; van der Putten, A.; Vlaskamp, C.; Maes, B.
Background: Multisensory storytelling (MSST) is an individualised activity for people with profound intellectual and multiple disabilities (PIMD) in which a story is being told with an emphasis on sensory experiences and social interaction. MSST is a promising approach, but needs more empirical research evidence. In general, there is a lack of…
Zijlstra, HP; Vlaskamp, C
Background The aim of this study was to analyse the impact of medical conditions of children with profound intellectual and multiple disabilities on the professional support they receive in centres for special education. Method The medical files, the daily records and daily communication records
Jansen, S. L. G.; van der Putten, A. A. J.; Vlaskamp, C.
Background 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
Houwen, Suzanne; van der Putten, Annette; Vlaskamp, Carla
Background: It is generally agreed that motor activity promotes motor, cognitive, and social development, but the specific benefits in children with severe or profound intellectual disabilities (S-PID) are as yet unknown. The aim of this study was to systematically review the evidence related to
Vos, P.; De Cock, P.; Petry, K.; Van Den Noortgate, W.; Maes, B.
Background: The measurement of subjective well-being in people with severe and profound intellectual disabilities (ID) is a difficult challenge. As they cannot self-report about their life satisfaction, because of severe communicative and cognitive limitations, behavioural observations of their emotions and moods are important in the measurement…
Nijs, Sara; Penne, Anneleen; Vlaskamp, Carla; Maes, Bea
Background Children with profound intellectual and multiple disabilities (PIMD) meet other children with PIMD in day care centres or schools. This study explores the peer-directed behaviours of children with PIMD, the peer interaction-influencing behaviour of the direct support workers and the
Vlaskamp, Carla; Hiemstra, Saskia J.; Wiersma, Linda A.; Zijlstra, Bonne J. H.
In the Netherlands, the Dutch government instituted policies that enable persons with profound intellectual and multiple disabilities (PIMD) to attend day services. Over the past 15 years, surveys have indicated a progressive increase in the number of hours that such adults spend at day activities centers. However, information about how these…
Hiemstra, S. J.; Vlaskamp, C.; Wiersma, L. A.
Increasing numbers of adults with profound intellectual and multiple disabilities (PIMD) are being offered more--and more frequent--day services at activity centres. Little is known about the way direct support persons (DSP) in activity centres divide their time over the various tasks they have to perform and to what extent they are focused on…
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…
van der Putten, A; Reynders, K; Vlaskamp, C; Nakken, H
Background This study analysed goals formulated in a functionally focused curriculum called Mobility Opportunities Via Education(TM) (MOVE). Method The subjects were 49 children with profound multiple disabilities (PMD) who attended a centre for special education where the MOVE curriculum was
Waninge, A.; Putten, A.A.J. van der; Stewart, R.E.; Steenbergen, B.; Wijck, R. van; Schans, C.P. van der
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
Waninge, A.; Putten, A.A. van der; Stewart, R.E.; Steenbergen, B.; Wijck, R. van; Schans, C.P. van der
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
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
Mechling, Linda C.; Bishop, Vanessa A.
This article reports on two studies investigating the use of computer-based stimuli that may then be used to develop activities and programming for students with profound multiple disabilities (PMD). Both studies used an alternating treatments design and systematic assessment strategy to present stimuli sequentially and to measure student…
Nijs, Sara; Penne, Anneleen; Vlaskamp, Carla; Maes, Bea
Background: Children with profound intellectual and multiple disabilities (PIMD) meet other children with PIMD in day care centres or schools. This study explores the peer-directed behaviours of children with PIMD, the peer interaction-influencing behaviour of the direct support workers and the children's positioning. Method: Group activities for…
O'Brien, John; O'Brien, Connie Lyle
This discussion of friendship in the lives of people with developmental disabilities raises questions which probe the nature of friendship, friendship between people with and without disabilities, and the special challenges involved in making and keeping friends. First, four dimensions of friendship are identified and discussed: (1) attraction…
Ryan, Barbara; West-Tackett, Marsha
This document presents one module in a set of training resources for trainers to use with parents and/or professionals serving children with disabilities; focus is on socialization and sexuality of the developmentally disabled. The modules stress content and activities that build skills and offer resources to promote parent-professional…
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…
Boxall, Kathy; Ralph, Sue
Although there is increasing interest in service user involvement in research, such involvement rarely extends to people with profound and multiple learning disabilities. New developments in visual methodologies offer the potential for people with profound and multiple learning disabilities to be included in research. At the same time, however,…
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.
Roane, Henry S.; Piazza, Cathleen C.; Bodnar, Laura E.; Zimmerman, Kerri L.
This article reviews the extant literature on the occurrence of sleep disorders in children with developmental disabilities. Various assessment and treatment strategies for sleep difficulties are examined and issues are discussed that may influence treatment development as well as the best practices for addressing sleep difficulties. (Contains…
Young, Hannah; Hogg, James; Garrard, Brenda
People with intellectual disabilities are thought to have a reduced capacity for understanding death. Drawing on cognitive theory, researchers have suggested that those with profound intellectual and multiple disabilities mainly perceive loss as a mismatch between past and present experiences. However, very little research has considered how carers conceptualize bereavement in relation to this group. Semi-structured interviews obtained responses from seven carers. Transcripts were examined using interpretative phenomenological analysis. Two superordinate themes emerged: 'difficulty articulating the experience of loss' and 'making sense of bereavement through familiar patterns'. Carers conceptualize bereavement primarily in cognitive terms, but also take account of relational factors mediating loss. Implications for training and further research are outlined. © 2016 John Wiley & Sons Ltd.
Cruz, Ivette; Vicaria, Ishabel; Wang, Nae-Yuh; Niparko, John; Quittner, Alexandra L
Over the past decade, the number of deaf children with developmental disabilities receiving cochlear implants has increased dramatically. However, little is known about the developmental outcomes of these children post-implantation. The current study evaluated oral language and behavioral outcomes over 3 years after implantation in a sample of typically developing deaf children and children with developmental disabilities. A three year longitudinal study of the effects of cochlear implantation on language and behavioral outcomes in children with and without additional disabilities. Six cochlear implant centers in the United States. The study cohort consisted of 188 deaf children. Eighty-five percent of the sample (n = 157) had a single diagnosis of severe to profound hearing loss and 15% (n = 31) had an additional disability. Oral language was assessed using the Reynell Developmental Language Scales, and behavioral outcomes were assessed using the Child Behavior Checklist. Results using multilevel modeling indicated that deaf children with and without additional disabilities improved significantly in oral language skills post-implantation. However, children with additional disabilities made slower progress. In terms of specific diagnoses, children with developmental disorders, such as autism, made the slowest progress over time. In addition, behavior problems increased significantly in this group, whereas behavior problems decreased over 3 years in the typically developing deaf sample. Overall, given the improvements in expressive and receptive language skills documented over 3 years, these findings support the use of cochlear implants for deaf children with developmental disabilities.
Moss, Lucy; Smith, Melanie; Wharton, Sarah; Hames, Annette
Chronic constipation is a common problem in people with learning disabilities. Treatment often involves dietary changes or long-term laxative use. The participants were five children with profound learning disabilities and additional physical difficulties. Their long-standing idiopathic constipation was managed by laxatives. Intervention lasted up…
Nijs, Sara; Penne, Anneleen; Vlaskamp, Carla; Maes, Bea
Children with profound intellectual and multiple disabilities (PIMD) meet other children with PIMD in day care centres or schools. This study explores the peer-directed behaviours of children with PIMD, the peer interaction-influencing behaviour of the direct support workers and the children's positioning. Group activities for children with PIMD initiated by a direct support worker were video-recorded. The behaviour and positioning of the children and the behaviour of the direct support workers were coded. Limited peer-directed behaviour of the children with PIMD and peer interaction-influencing behaviour of the direct support workers are observed. Weak associations were found between the positioning or peer interaction-influencing behaviours and the behaviour of children with PIMD. Children with PIMD show social interest in each other during group activities. More knowledge is needed to create an environment which facilitates peer-directed behaviours of persons with PIMD. © 2015 John Wiley & Sons Ltd.
Roemer, Miriam; Verheul, Ellen; Velthausz, Frank
To support people with profound intellectual and multiple disabilities (PIMD), it is essential to understand how they experience their environment. Insight into perception behaviour may provide an entry point for improved understanding. A random sample of a 30-min video registration of five participants with PIMD was used to code behaviours per second based on an ethogram containing 157 different perception behaviours in nine categories. Eighty-nine different perception behaviours were observed, of which movements with eyes, head and arms were most common. The senses used most were seeing, hearing and touching. Finally, the function of five perception patterns was established in relation to their function:awareness, focusing attention and tension regulation. Close observation using an observation ethogram provides insight into how people with PIMD perceive their environment. © 2017 John Wiley & Sons Ltd.
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
Roche, Laura; Sigafoos, Jeff; Lancioni, Giulio E; O'Reilly, Mark F; Green, Vanessa A
We reviewed 18 studies reporting on the use of microswitch technology to enable self-determined responding in children with profound and multiple disabilities. Identified studies that met pre-determined inclusion criteria were summarized in terms of (a) participants, (b) experimental design, (c) microswitches and procedures used, and (d) main results. The 18 studies formed three groups based on whether the microswitch technology was primarily intended to enable the child to (a) access preferred stimuli (7 studies), (b) choose between stimuli (6 studies), or (c) recruit attention/initiate social interaction (5 studies). The results of these studies were consistently positive and support the use of microswitch technology in educational programs for children with profound and multiple disabilities as a means to impact their environment and interact with others. Implications for delivery of augmentative and alternative communication intervention to children with profound and multiple disabilities are discussed.
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.
Full Text Available Background: The Western Cape Forum for Intellectual Disability took the South African Government to court in 2010 on its failure to implement the right to education for Children with Severe and Profound Intellectual Disability. Subsequently, multidisciplinary teams were appointed by the Western Cape Education Department to deliver services to the Special Care Centres (SCCs. Initially, minimal information was available on this population.Objectives: The purpose is to document the process of developing and validating a database for the collection of routine data.Method: A descriptive analytical study design was used. A sample of convenience was drawn from individuals under the age of 18 years, enrolled in SCCs in the Western Cape. The team who entered and analysed the data reached consensus regarding the utility and feasibility of each item.Results: Data were collected on 134 children. The omission of certain items from the database was identified. Some information was not reliable or readily available. Of the instruments identified to assess function, the classification systems were found to be reliable and useful, as were the performance scales. The WeeFIM, on the other hand, was lengthy and expensive, and was therefore discarded.Discussion and conclusions: A list of items to be included was identified. Apart from an individual profile, it can be useful for service planning and monitoring, if incorporated into the central information system used to monitor the performance of all children. Without such inclusion, this most vulnerable population, despite court ruling, will not have their right to education adequately addressed.
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
Wessels, Marleen D.; Bossink, Leontien W.M.; van der Putten, Annette A.J.
One of the benefits of physical activity in people with profound intellectual and multiple disabilities (PIMD) is an increase in alertness. This study investigated the effect of a power-assisted exercise intervention on alertness and the relationship of this effect to the level of additional motor
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
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.
Lancioni, Giulio E.; Bellini, Domenico; Oliva, Doretta; Singh, Nirbhay N.; O'Reilly, Mark F.; Sigafoos, Jeff
These two studies assessed camera-based microswitch technology for eyelid and mouth responses of two persons with profound multiple disabilities and minimal motor behavior. This technology, in contrast with the traditional optic microswitches used for those responses, did not require support frames on the participants' face but only small color…
Vos, P.; De Cock, P.; Petry, K.; Van Den Noortgate, W.; Maes, B.
Background: Behavioural observations are the most frequently used source of information about emotions of people with severe or profound intellectual disabilities but have not yet been validated against other measures of emotion. In this study we wanted to validate the behavioural observations of emotions using respiration (rib cage contribution,…
“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
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…
Simmons, Ben; Watson, Debbie
Children with profound and multiple learning disabilities (PMLD) are said to experience severe congenital impairments to consciousness and cognition stemming from neurological damage. Such children are understood as operating at the pre-verbal stages of development, and research in the field typically draws conceptual resources from psychology to…
Fonteine, H.; Zijlstra, H. P.; Vlaskamp, C.
Background: Because of the complexity of the problems that affect children with profound intellectual and multiple disabilities (PIMD), communication between parents and teachers at special educational centres is indispensable. Logs are widely used in the Netherlands although only little is known
Bindels-de Heus, Karen G. C. B.; van Staa, AnneLoes; van Vliet, Ingeborg; Ewals, Frans V. P. M.; Hilberink, Sander R.
Many children with profound intellectual and multiple disabilities (PIMD) now reach adulthood. The aim of this study was to elicit parents' experiences with the transfer from pediatric to adult medical care. A convenience sample of 131 Dutch parents of young people with PIMD (16--26 years) completed a web-based questionnaire. Twenty-two percent of…
Lancioni, Giulio E.; Bellini, Domenico; Oliva, Doretta; Singh, Nirbhay N.; O'Reilly, Mark F.; Lang, Russell; Didden, Robert
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 those responses, did not require support frames on…
Bobzien, Jonna L.
The field of special education has begun to concentrate its efforts on developing objectives and procedural strategies that promote a positive quality of life for students with profound multiple disabilities, while determining which educational strategies are the most appropriate. A multi-element design was used to compare the effects of two…
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
Kamstra, Aafke; van der Putten, Annette A. J.; 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…
de Boer, Anke A.; Munde, Vera S.
Despite the growing introduction of inclusive education, children with profound intellectual and multiple disabilities (PIMD) are barely included. Because an underlying factor here may be the attitudes of those directly involved, the present study focuses on the attitude of parents and relating variables concerning experience with individuals with…
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, Vera; Vlaskamp, Carla; Vos, Pieter; Maes, Bea; Ruijssenaars, Wied
Although observation largely takes into account the needs and abilities of individuals with profound intellectual and multiple disabilities, several difficulties are related to this assessment method as well. Our aim in this study was to investigate what possibilities the use of physiological measurements make available to validate alertness…
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,…
van der Heide, D. C.; van der Putten, A. A. J.; van den Berg, P. B.; Taxis, K.; Vlaskamp, C.
Background: 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. Method: Persons with PIMD with an…
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
Freitag, Lisa; Liaschenko, Joan
The controversy over the so-called Ashley Treatment (AT), a series of medical procedures that inhibited both growth and sexual development in the body of a profoundly intellectually impaired girl, usually centers either on Ashley's rights, including a right to an intact, unaltered body, or on Ashley's parents' rights to make decisions for her. The claim made by her parents, that the procedure would improve their ability to care for her, is often dismissed as inappropriate or, at best, irrelevant. We argue, however, that caregiving is a central issue in the controversy, as Ashley's need for caregiving is a defining characteristic of her life. In this article, we analyze the ethics of the Ashley Treatment within the context of family caregiving. Through the physical and emotional work of caregiving, families participate in the formation and maintenance of personal identity, a process that Hilde Lindemann recently called "holding." We argue that, in an intellectually disabled person such as Ashley, who depends on her family for every aspect of her care, the family's contribution to identity is an essential source of personhood. We believe that the treatment can be justified if it is indeed an instance of appropriate family "holding" for Ashley. Copyright 2017 The Journal of Clinical Ethics. All rights reserved.
Edrisinha, Chaturi; O'Reilly, Mark F.; Choi, Ha Young; Sigafoos, Jeff; Lancioni, Giulio E.
We evaluated a video prompting procedure to teach adults with developmental disabilities to take a digital photograph and print it using a laptop computer and a printer. Participants were four men with developmental disabilities. Training was conducted at the participants' residential facility. During baseline, participants were told to take a…
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,…
Vasudevan, Pradeep; Suri, Mohnish
Global developmental delay and intellectual disability are phenotypically and genetically heterogeneous and a specific diagnosis is not reached in many cases. This paper outlines a systematic approach to global developmental delay and intellectual disability. © Royal College of Physicians 2017. All rights reserved.
Schilling, Robert F.
The paper examines the low incidence of disabled children in state and national statistics on maltreated children despite an overrepresentation in research. The authors suggest that the child protection system may be neglecting developmentally disabled children by failing to recognize and document disabilities among maltreated populations.…
Hanzen, Gineke; van Nispen, Ruth M A; van der Putten, Annette A J; Waninge, Aly
The available opinions regarding participation do not appear to be applicable to adults with visual and severe or profound intellectual disabilities (VSPID). Because a clear definition and operationalization are lacking, it is difficult for support professionals to give meaning to participation for adults with VSPID. The purpose of the present study was to develop a definition and operationalization of the concept of participation of adults with VSPID. Parents or family members, professionals, and experts participated in an online concept mapping procedure. This procedure includes generating statements, clustering them, and rating their importance. The data were analyzed quantitatively using multidimensional scaling and qualitatively with triangulation. A total of 53 participants generated 319 statements of which 125 were clustered and rated. The final cluster map of the statements contained seven clusters: (1) Experience and discover; (2) Inclusion; (3) Involvement; (4) Leisure and recreation; (5) Communication and being understood; (6) Social relations; and (7) Self-management and autonomy. The average importance rating of the statements varied from 6.49 to 8.95. A definition of participation of this population was developed which included these seven clusters. The combination of the developed definition, the clusters, and the statements in these clusters, derived from the perceptions of parents or family members, professionals, and experts, can be employed to operationalize the construct of participation of adults with VSPID. This operationalization supports professionals in their ability to give meaning to participation in these adults. Future research will focus on using the operationalization as a checklist of participation for adults with VSPID. Copyright © 2016 Elsevier Ltd. All rights reserved.
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.
Bernstein, A M; Visconti, K J; Csorba, J; Radvanyi, K; Rojahn, J
We investigated whether current mood and interest/pleasure ratings in adults with moderate to profound intellectual disabilities were predictive of challenging behaviour [self-injurious behaviour (SIB), aggressive/destructive behaviour and stereotypic behaviour] and vice versa. In this combined cross-sectional and longitudinal study, staff members of a Hungarian residential facility completed translated versions of the Behaviour Problems Inventory-Short Form (BPI-S), the Challenging Behaviour Interview (CBI) and the Mood, Interest and Pleasure Questionnaire-Short Form (MIPQ-S) for 50 participants at two time points, approximately 4 to 5 months apart. Bivariate correlations from data concurrently assessed at Time-1 showed significant linear relationships between the SIB (both frequency and severity scores) and Interest/Pleasure sub-scales, and the Aggressive/Destructive Behaviour (severity scores) and the MIPQ-S Mood sub-scales (unadjusted for multiple correlations). All of these effects were found with the BPI-S data, but not with the CBI. Multiple regression analyses revealed that (1) low interest/pleasure assessed at Time-1 predicted high SIB (frequency and severity) at Time-2. (2) Interest/pleasure was not predictive of aggressive or stereotypic behaviour. (3) Mood at Time-1 did not predict any of the three types of behaviour problems at Time-2. (4) In reverse, high SIB (frequency and severity) at Time-1 predicted low interest/pleasure ratings at Time-2. (5) Surprisingly, frequent aggressive/destructive behaviour predicted high interest/pleasure. (6) Stereotypic behaviour scores at Time-1 did not predict interest/pleasure ratings at Time-2. Again, all of these effects were only found with the BPI-S data, but not with the CBI. Internal consistency, test-retest reliability and concurrent validity of the Hungarian versions of all three questionnaires had generally satisfactory outcomes. The fact that increasingly frequent and severe SIB was predicted by declining
Lindsay, W R; Pitcaithly, D; Geelen, N; Buntin, L; Broxholme, S; Ashby, M
This paper is an investigation into the efficacy of four therapeutic treatment procedures increasingly used with people with profound learning disabilities: snoezelen, hand massage/aromatherapy, relaxation, and active therapy (a bouncy castle). In particular, the effects of these procedures on concentration and responsiveness were examined. Eight subjects with profound learning disabilities took part in the study and each subject received each of the treatments. To assess the effects of the treatments, simple concentration tasks were administered and the subjects' responsiveness to each treatment was rated by independent observers. The results suggest that both snoezelen and relaxation had a positive effect on concentration and seemed to be the most enjoyable therapies for clients, whereas hand massage/aromatherapy and active therapy had no or even negative effects on concentration and appeared less enjoyable.
Dammann, O; Follett, P
The field of theoretical neuroscience is gaining increasing recognition. Virtually all areas of neuroscience offer potential linkage points for computational work. In developmental neuroscience, main areas of research are neural development and connectivity, and connectionist modeling of cognitive development. In this paper, we suggest that computational models can be helpful tools for understanding the pathogenesis and consequences of perinatal brain damage and subsequent developmental disability. In particular, designing multi-scale computational models should be considered by developmental neuroscientists interested in helping reduce the risk for developmental disabilities. Georg Thieme Verlag Stuttgart · New york.
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…
Feldman, M A; Case, L; Garrick, M; MacIntyre-Grande, W; Carnwell, J; Sparks, B
The present study identified and remediated child-care skill deficits in parents with developmental disabilities to reduce their risk of child neglect. Eleven mothers with developmental disabilities who were considered by social service and child welfare agencies to be providing neglectful child care were found in baseline to have several important child-care skill deficits (e.g., bathing, diaper rash treatment, cleaning baby bottles) compared to nonhandicapped mothers. Parent training (consi...
Chou, Yueh-Ching; Chiao, Chi; Fu, Li-Yeh
Background: Primary family carers of adults with profound intellectual and multiple disabilities (PIMD) experience a range of considerable demands. Method: A census survey was conducted in a city of Taiwan; 796 family carers of adults (aged 18 or older) diagnosed with intellectual disability and/or with multiple disabilities living with the family…
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…
O'Sullivan, Deirdre; Strauser, David R; Wong, Alex W K
The purpose of this exploratory study was to examine the differences in levels of work personality for persons with psychiatric disabilities compared to persons with other types of disabilities. Seventy one adults eligible to receive Vocational Rehabilitation services participated; 30 reported a physical disability, 26 reported a psychiatric disability, and 15 reported a learning disability. Eligible participants were recruited through VR offices and volunteered to participate. Results indicate that persons with psychiatric disabilities scored significantly lower on the Work Task and Social Skills subscales of the Developmental Work Personality Scale (DWPS) when compared to individuals with physical disabilities, but scored higher than individuals with physical and learning disabilities on the Role Model subscale. The results of this study provide some initial clarity regarding developmental work personality differences among three broad categories of disability. Recommendations for future research are provided.
Sullivan, William F.; Berg, Joseph M.; Bradley, Elspeth; Cheetham, Tom; Denton, Richard; Heng, John; Hennen, Brian; Joyce, David; Kelly, Maureen; Korossy, Marika; Lunsky, Yona; McMillan, Shirley
Abstract Objective To update the 2006 Canadian guidelines for primary care of adults with developmental disabilities (DD) and to make practical recommendations based on current knowledge to address the particular health issues of adults with DD. Quality of evidence Knowledgeable health care providers participating in a colloquium and a subsequent working group discussed and agreed on revisions to the 2006 guidelines based on a comprehensive review of publications, feedback gained from users of the guidelines, and personal clinical experiences. Most of the available evidence in this area of care is from expert opinion or published consensus statements (level III). Main message Adults with DD have complex health issues, many of them differing from those of the general population. Good primary care identifies the particular health issues faced by adults with DD to improve their quality of life, to improve their access to health care, and to prevent suffering, morbidity, and premature death. These guidelines synthesize general, physical, behavioural, and mental health issues of adults with DD that primary care providers should be aware of, and they present recommendations for screening and management based on current knowledge that practitioners can apply. Because of interacting biologic, psychoaffective, and social factors that contribute to the health and well-being of adults with DD, these guidelines emphasize involving caregivers, adapting procedures when appropriate, and seeking input from a range of health professionals when available. Ethical care is also emphasized. The guidelines are formulated within an ethical framework that pays attention to issues such as informed consent and the assessment of health benefits in relation to risks of harm. Conclusion Implementation of the guidelines proposed here would improve the health of adults with DD and would minimize disparities in health and health care between adults with DD and those in the general population
D'Alessandro, Patrizia; Giuglietti, Marta; Baglioni, Antonella; Verdolini, Norma; Murgia, Nicola; Piccirilli, Massimo; Elisei, Sandro
Approximately one-third of patients with epilepsy continue to experience seizures despite adequate therapy with antiepileptic drugs. Drug-resistant epilepsy is even more frequent in subjects with intellectual disability. As a result, several non-pharmacological interventions have been proposed to improve quality of life in patients with intellectual disability and drug-resistant epilepsy. A number of studies have demonstrated that music can be effective at reducing seizures and epileptiform discharges. In particular, Mozart's sonata for two pianos in D major, K448, has been shown to decrease interictal EEG discharges and recurrence of clinical seizures in patients with intellectual disability and drug-resistant epilepsy as well. The aim of this study is to investigate the influence of Mozart's music on seizure frequency in institutionalized epileptic subjects with profound/severe intellectual disability. Twelve patients (10 males and 2 females) with a mean age of 21.6 years were randomly assigned to two groups in a cross-over design; they listened to Mozart K448 once a day for six months. A statistically significant difference was observed between the listening period and both baseline and control periods. During the music period, none of the patients worsened in seizure frequency; one patient was seizure-free, five had a greater than 50% reduction in seizure frequency and the remaining showed minimal (N=2) or no difference (N=4). The average seizure reduction compared to the baseline was 20.5%. Our results are discussed in relation to data in the literature considering differences in protocol investigation. Music may be considered a useful approach as add-on therapy in some subjects with profound intellectual disability and drug-resistant epilepsy and can provide a new option for clinicians to consider, but further large sample, multicenter studies are needed to better understand the characteristics of responders and non-responders to this type of non
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...... interface on the arm and around the shoulder using the saltation perceptual illusion to induce movement of the corresponding joint. In this paper we describe the design principles of the interface and the proposed experimental design to evaluate it....
Whiteley, Annette D; Kurtz, Donna L M; Cash, Penelope A
Individuals with developmental disabilities (DD) experience stigma, discrimination, and barriers, including access to appropriate health care, that restrict their ability to be equal participants in society. In this study, underlying contexts, assumptions, and ways of acting are investigated that perpetuate inequalities and pejorative treatment toward those with disabilities. Several nurse researchers and educators suggest specific content for, or approaches to, education about DD. Critical pedagogy that employs cultural competency and a disability studies' framework to guide curriculum and course development will allow assumptions underlying common health care practices that oppress and "other" people with disabilities to be exposed and changed.
Dyer, Kathleen; And Others
In two studies involving seven developmentally disabled children aged 7-14, phonetic sounds and syntactic structures representing different levels of normal development were taught. Results showed that the children's sequence of learning language forms followed the normal developmental model (e.g., earlier emerging forms were acquired in fewer…
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,
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
Tunnicliffe, Penny; Oliver, Chris
The research literature notes both biological and operant theories of behavior disorder in individuals with intellectual disabilities. These two theories of genetic predisposition and operant reinforcement remain quite distinct; neither theory on its own is sufficient to explain challenging behavior in genetic syndromes and an integrated approach…
Belva, Brian C.; Matson, Johnny L.; Sipes, Megan; Bamburg, Jay W.
Previous research has shown that adults with intellectual disability (ID) evince communication deficits. These communication problems can be divided into problems with receptive, expressive, and written domains. While much research has been devoted to investigating communication deficits in ID in general, scant research has been conducted on…
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…
Blain-Moraes, Stefanie; Chau, Tom
Background: Physiological responses have been used in individuals with acquired disability to enable communicative interaction without motor movement. This study explored four autonomic nervous system (ANS) signals--electrodermal activity, skin temperature, cardiac patterns and respiratory patterns--to enable interaction with individuals born with…
Liu, Chunhong; Belichenko, Pavel V.; Zhang, Li; Fu, Dawei; Kleschevnikov, Alexander M.; Baldini, Antonio; Antonarakis, Stylianos E.; Mobley, William C.; Yu, Y. Eugene
Down syndrome (DS) is mainly caused by the presence of an extra copy of human chromosome 21 (Hsa21) and is a leading genetic cause for developmental cognitive disabilities in humans. The mouse is a premier model organism for DS because the regions on Hsa21 are syntenically conserved with three regions in the mouse genome, which are located on mouse chromosome 10 (Mmu10), Mmu16 and Mmu17. With the advance of chromosomal manipulation technologies, new mouse mutants have been generated to mimic DS at both the genotypic and phenotypic levels. Further mouse-based molecular genetic studies in the future may lead to the unraveling of the mechanisms underlying DS-associated developmental cognitive disabilities, which would lay the groundwork for developing effective treatments for this phenotypic manifestation. In this review, we will discuss recent progress and future challenges in modeling DS-associated developmental cognitive disability in mice with an emphasis on hippocampus-related phenotypes. PMID:21865664
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.…
Spike, Jeffrey P
Individuals who are profoundly mentally handicapped do not have the capacity to make their own decisions and also do not have a past record of decisions, from when they had capacity, to guide us in making decisions for them. They represent a difficult group, ethically, for surrogate decision making. Here I propose some guidelines, distinguishing between these patients and patients in a persistent vegetative state (PVS). As the life span of patients becomes shorter, or their level of consciousness becomes permanently impaired, the presumption for comfort care should become an imperative, and the standard of evidence to justify any invasive intervention should become higher. For members of this population, who have no more ability to refuse treatment than to consent to it, protection of the vulnerable must mean allowing a peaceful death as well as a comfortable life. Reasonable legal safeguards are also proposed to allow improved end-of-life decisions to be made for this population.
Watson, Joanne; Wilson, Erin; Hagiliassis, Nick
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. Five people with severe or profound intellectual disability's experiences of supported decision making were examined. This article is particularly focused on one participant's experiences at the end of his life. All five case studies identified that supporters were most effective in providing decision-making support for participants when they were relationally close to the person and had knowledge of the person's life story, particularly in relation to events that demonstrated preference. Findings from this study provide new understandings of supported decision making for people with severe or profound intellectual disability and have particular relevance for supporting decision making at the end of life. © 2017 John Wiley & Sons Ltd.
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.
Full Text Available Developmental disabilities exist in children and adolescents, enabling them to live an independent and self-governing life, requiring special health related services. We are intended to inform dental professionals in planning and implementing a dental treatment for people with developmental disabilities. Cerebral palsy is defined as being a group of motor abnormalities and functional impairments that affect muscle coordination, and characterized by uncontrolled body movements, intellectual disabilities, balance-related abnormalities or seizure disorders. These patients can be successfully treated in normal dental practices, but because they have problems with movements, care must be tailored accordingly. Down syndrome, a very common genetic disorder, is usually associated with different physical and medical problems, intellectual disabilities, and a developmental delay. These patients can be treated with success in dental offices, this way making a difference in the medical care for people with special needs. Autism is a neurodevelopmental disorder characterized by impaired social interaction, verbal and non-verbal communication and by restricted and repetitive behavior. Self-injurious behavior, obsessive routines and unpredictable body movements can influence dental care. Because of the coexisting conditions (epilepsy or intellectual disability, one can find this people among the most challenging to treat. There is a need of greater awareness, focus and education in the field of the unique and complex oral health care that people with disabilities need. Making a difference their oral health positively influences an already challenged existence. According to the ethical principles, patients with developmental disabilities should be treated equitably depending on their necessities.
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.
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
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.; 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, H.C.M.; Sigafoos, J.
This paper describes research on the prevalence, correlates, and treatment of sleep disorders in individuals with developmental disabilities. A significant number of individuals with developmental disabilities have disordered sleep, although prevalence estimates vary from 13% to 86%. Constitutional
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,…
浅原, 京子; 内堀, 晃彦; 江原, 史朗; 久保田, 良輔
Providing necessary support for students with difficulties or special needs requires a college-wide framework. This paper reports how National Institute of Technology, Ube College has been developing its system to support students with developmental disabilities for the past several years, and discusses what more can and should be done to keep improving its current system.
Matson, Johnny L.; Belva, Brian; Hattier, Megan A.; Matson, Michael L.
Pica is a very serious and often life threatening problem which occurs largely in persons with developmental disabilities. The topic has received sporadic attention from researchers for several decades. This paper reviews definitions, diagnostic implications, causes, prevalence, and assessment methods that have been described in the research…
This paper describes the need for and the structure of a socialization program designed to provide a social environment for five deaf adults with developmental disabilities residing in two different group homes. The program was developed to address the isolation experienced by such adults living in a community with others who do not use sign…
Facon, Bruno; Magis, David; Belmont, John M.
The matching of groups is a traditional way to control for confounding variables in developmental disabilities research. The equivalency of means across groups is routinely checked for these variables, but not the homogeneity of their variances or the shapes of their distributions. In the present paper, it is argued that group matching can go…
Durand, V. Mark; And Others
Four children (ages 2-12) with developmental disabilities and sleep disorders were provided with a consistent bedtime routine combined with a graduated extinction procedure for nighttime behavior problems. Treatment resulted in decreases in night wakings and disturbances, indicating the effectiveness of relatively simple behavioral interventions.…
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…
Feldman, Maurice A.; And Others
Eleven mothers with developmental disabilities who provided neglectful child care received parent training. The training (consisting of verbal instructions, pictorial manuals, modeling, feedback, and reinforcement) resulted in rapid acquisition and maintenance of child-care skills in all mothers. (Author/JDD)
Fennick, Ellen; Royle, James
Activity coaches from university teacher education and health education programs were trained to use individualized accommodations to help six children (ages 6-13) with developmental disabilities participate in community recreation activities. Children participated in swim classes or gymnastics at individualized levels, expressed enjoyment, and…
The purpose of the present study was to investigate the acquisition, maintenance, and generalization effects of antecedent prompt and testing procedure (APTP) on teaching emergency phone numbers to youth with developmental disabilities. Three youths with mental retardation participated in the study. All participants were inclusion students at a…
Cook, Louisa D.
The psychosocial difficulties that usually accompany learning disabilities are examined from a framework of developmental theory, particularly that of Erik Erikson. The implications of this perspective for treatment of adolescents with learning problems is discussed, and the summer residential program at Goddard College described. (Author)
Jansen, Suzanne Lg; van der Putten, Annette Aj; Vlaskamp, Carla
There is little data on the collaboration between parents and professionals in the support of persons with profound intellectual and multiple disabilities. Since communication is essential to collaboration, this study analysed the frequency, means, and personal experiences of communication between parents and professionals. A multiple case study ( n = 4) was conducted. Observations were logged for every contact between professionals and parents during 12 months. The mean number of contacts a month ranged from 1.9 to 16.7 across the cases. Most of the contacts were with the child's direct support persons (85.2%) and exchanging information (35.5%) was the most common function. Issues concerning health (28.4%) were the most common subjects discussed. The majority of the mothers' experiences were positive. Direct support persons play a crucial role; they need to be aware of this role and to be trained to fulfill their role to acknowledge parents as partners.
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.
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.
Lancioni, G E; Singh, N N; O'Reilly, M F; Oliva, D; Basili, G
This paper was to provide an overview of research studies aimed at increasing indices of happiness of persons with severe/profound intellectual and multiple disabilities. Computerized and manual searches were carried out to identify the studies published from 1990 to 2004 (i.e., the period during which the issues of quality fo life and happiness in people with disabilities have become more prominent). Twenty-four research studies were identified. They involved the use of six different procedures, that is, structured stimulation sessions, microswitch-based simulation sessions, leisure activities and favourite work tasks or conditions, positive environment or positive behaviour support programmes and mindful caregiving, favourite stimulation automatically delivered on exercise engagement, and snoezelen. Data tended to be positive with increases in the participants' indices of happiness, but some failures also occurred. The outcomes were discussed in relation to (a) methodological issues, such as designs of the studies, length of the intervention, and number of participants, and (b) personal and practical implications of the procedures. Some suggestions for future research (particularly focused on extending evidence and overcoming present methodological weakness) were also examined.
Soorya, Latha; Leon, Jill; Trelles, M Pilar; Thurm, Audrey
Specialized strategies are needed to understand the complex neuropsychological impairments reported in individuals with profound intellectual and multiple disabilities (PIMD) associated with rare genetic disorders. This narrative review focuses on assessment of individuals with Phelan-McDermid Syndrome (PMS) as a condition commonly associated with PIMD. Published case series and prospective studies were reviewed to evaluate approaches to cognitive, language, motor/sensory, and behavioral domains. This review is framed using general principles for neuropsychological evaluation in PIMD. Neuropsychological assessment domains and tools varied across published reports. Adaptive behavior measures, out-of-range developmental assessments, and social-communication measures were commonly used. Available findings were used to shape a recommended framework with potential to improve measurement of clinical outcomes and advance scientific discovery. The recommended framework outlines an inter-disciplinary and multimodal neuropsychological assessment process relying on modified standardized assessments, functional assessments, and caregiver/informant reports when evaluating individuals with PIMD. Arrested development and skill variability/regression are also discussed as additional, important considerations in neuropsychological evaluation of individuals with PIMD and rare genetic disorders.
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.
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
Weiss, J A; Ting, V; Perry, A
We know little about the correlates of mental health problems in youth with severe and profound intellectual disability (ID), as most research includes these youth within larger samples that include greater proportions of mild and moderate disability. The purpose of the current study was to identify the child, family and psychosocial characteristics that were associated with the presence of psychiatric diagnoses and maladaptive behaviour in youth with severe ID. Participants were 141 parents of youth with severe or profound levels of ID, 4 to 18 years of age. The mean age of children was 11.04 years (SD = 3.38), with 68% male and 39% with autism spectrum disorder (ASD). Parents completed a primarily online survey of child and family characteristics, negative life events, family quality of life and their own mental health. Logistic regression analyses revealed that youth with a psychiatric diagnosis had higher levels of adaptive behaviour and experienced more negative life events than youth without psychiatric diagnosis, while the presence of clinically significant maladaptive behaviour was related to higher levels of adaptive behaviour, parents' mental health problems and lower family quality of life. Child age, gender, ASD status and financial hardship were not related to either outcome variable. Youth with severe and profound ID who experience psychosocial stressors are more likely reported to have mental health problems than youth without such stressors. It is likely that a combination of child and family based interventions, along with with policies that address larger systemic issues of social adversity, are needed to promote mental health and treat psychopathology when it arises. © 2016 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.
Thyer, Bruce A; Pignotti, Monica
Individuals with a developmental disability can now be provided a variety of empirically supported treatments that have been shown to be useful in promoting educational attainments, social and vocational skills, and self-care, and in reducing behavioral problems. Unfortunately, a large number of pseudoscientific or bogus therapies continue to be offered to this population and their families. We review the characteristics of pseudoscientific and bogus treatments and provide several examples of unsupported or harmful interventions offered by contemporary social workers and other human service professionals, to the detriment of people with disabilities. We encourage social workers to identify pseudoscientific interventions and avoid providing these, in favor of using empirically supported treatments.
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.
BRAÚNA, Ana Paula Vasques Sales; Abreu,Mauro Henrique Nogueira Guimarães de; RESENDE,Vera Lúcia Silva; Castilho,Lia Silva
Abstract The aim of the present study was to investigate risk factors for dental caries in children with developmental disabilities who were treated at a clinical reference service for patients with special needs in Belo Horizonte, MG, Brazil. This is a retrospective cohort study that evaluated 401 dental charts of individuals without dental caries or restorations in their first dental appointment. The dependent variable was the time of occurrence of new dental caries or restorations and was ...
Liu, Chunhong; Belichenko, Pavel V; Zhang, Li; Fu, Dawei; Kleschevnikov, Alexander M; Baldini, Antonio; Antonarakis, Stylianos E; Mobley, William C; Yu, Y Eugene
Down syndrome (DS) is mainly caused by the presence of an extra copy of human chromosome 21 (Hsa21) and is a leading genetic cause for developmental cognitive disabilities in humans. The mouse is a premier model organism for DS because the regions on Hsa21 are syntenically conserved with three regions in the mouse genome, which are located on mouse chromosome 10 (Mmu10), Mmu16 and Mmu17. With the advance of chromosomal manipulation technologies, new mouse mutants have been generated to mimic DS at both the genotypic and phenotypic levels. Further mouse-based molecular genetic studies in the future may lead to the unraveling of the mechanisms underlying DS-associated developmental cognitive disabilities, which would lay the groundwork for developing effective treatments for this phenotypic manifestation. In this review, we will discuss recent progress and future challenges in modeling DS-associated developmental cognitive disability in mice with an emphasis on hippocampus-related phenotypes. Copyright © 2011 S. Karger AG, Basel.
Faulkner, M S
A uniform and consensus definition for quality of life is not currently available. Although the topic of quality of life is pertinent for individuals with neurodevelopmental and related disabilities, the most appropriate means for assessing it as a basis for developing or evaluating programs need to be identified. A global viewpoint of one's quality of life when emotional, physical, or cognitive limitations are manifested may be too narrow for capturing a realistic perspective for planning programs. A more holistic approach that includes both individual and parental or caregiver perceptions may better address the conceptualization of quality of life for persons with developmental disabilities. Models of quality of life for this population reflect lifespan challenges for achieving personal satisfaction in the following areas: (1) physical well-being or functional status, (2) social and emotional well-being, (3) material well-being, and, (4) developmental abilities. This paper addresses current models of quality of life and methodological considerations for investigating this concept with persons who have developmental disabilities. Multidimensional methods of measurement, possibly including proxies, are necessary for a comprehensive approach to studying such an elusive construct, particularly when cognitive function is limited.
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
Timmeren, van Dinette; van der Schans, C. P.; van der Putten, A. A. J.; Krijnen, W. P.; Steenbergen, H. A.; Lantman-de Valk, H. M. J. van Schrojenstein; Waninge, A.
BackgroundPeople with severe or profound intellectual and motor disabilities (SPIMD) encounter several risk factors associated with higher mortality rates. They are also likely to experience a cluster of health problems related to the severe brain damage/dysfunction. In order to earlier detect
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
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
Bossink, Leontien W.M.; van der Putten, Annette A.J.; Waninge, Aly; Vlaskamp, Carla
Objective: To assess the feasibility of conducting a randomised controlled trial to determine the effectiveness of a twenty-week power-assisted exercise intervention in people with profound intellectual and multiple disabilities and to evaluate the potential beneficial effects of this intervention.
Houwen, Suzanne; van der Putten, Annette; Vlaskamp, Carla
While if is generally agreed that motor activity promotes motor, cognitive, and social development, the specific benefits in people with severe or profound intellectual disabilities (S-PID) are as yet unknown. The aim of this study was to systematically review the evidence related to motor
van der Putten, Annette; Vlaskamp, Carla; Schuivens, Evelyne
Background To offer appropriate activities within the curriculum for children with profound intellectual and multiple disabilities (PIMD) is a challenge. An important determinant of the adequacy of an activity is whether teachers have detailed and specific knowledge about the sensory abilities and
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…
Vlaskamp, C.; Hiemstra, S. J.; Wiersma, L. A.
Persons with profound and multiple disabilities (PIMD) are dependent on staff to be sufficiently knowledgeable as to provide them with appropriate day services. One important determinant of the appropriateness and adequacy of a day support program is the level to which staff have detailed and specific knowledge about the functional abilities and…
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…
Wilder, Jenny; Granlund, Mats
Background: Children with profound intellectual and multiple disabilities (PIMD) demand intense family accommodations from birth and onwards. This study used an exploratory and qualitative study design to investigate stability and change in sustainability of daily routines and social networks of Swedish families of children with PIMD. Materials…
Jansen, Suzanne L. G.; van der Putten, Annette A. J.; Vlaskamp, Carla
Background: There is little data on the collaboration between parents and professionals in the support of persons with profound intellectual and multiple disabilities. Since communication is essential to collaboration, this study analysed the frequency, means, and personal experiences of communication between parents and professionals. Method: A…
Horrocks, Erin L.; Morgan, Robert L.
A multicomponent training package (live training, video modeling, role playing, and feedback) was used to train teachers to conduct assessment and to instruct students with profound multiple disabilities. Phase 1 of the study involved training seven teachers to conduct assessment in three areas: (a) preference assessment (i.e., identification of…
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…
Ten Brug, Annet; 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…
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…
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.
Zaal-Schuller, I H; Willems, D L; Ewals, F V P M; van Goudoever, J B; de Vos, M A
End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions. The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD. In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years. A long-lasting relationship appeared to facilitate the EoLDM process, although previous negative healthcare encounters could also lead to distrust. Parents and physicians encountered disagreements during the EoLDM process, but these disagreements could also improve the decision-making process. Most parents, as well as most physicians, considered the parents to be the experts on their child. In making an EoLD, both parents and physicians preferred a shared decision-making approach, although they differed in what they actually meant by this concept. The EoLDM process for children with PIMD can be improved if physicians are more aware of the specific situation and of the roles and expectations of the parents of children with PIMD. Copyright © 2016 Elsevier Ltd. All rights reserved.
Munde, V S; Vlaskamp, C; Maes, B; Ruijssenaars, A J J M
While 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. Therefore, the aim of the present study is to shed light on the sequential relationship between different stimuli and alertness levels in individuals with PIMD. Video observations were conducted for 24 participants during one-on-one interactions with a direct support person in multisensory environments. Time-window sequential analyses were conducted for the 120 s following four different stimuli. For the different stimuli, different patterns in terms of alertness became apparent. Following visual stimuli, the alertness levels of the individuals with PIMD changed in waves of about 20 s from 'active alert' to 'passive alert'. While auditory and tactile stimuli led to 'alert' reactions shortly after the stimulation, alertness levels decreased between seconds 20 and 120. Reactions to vestibular stimuli were only visible after 60 s; these were 'active alert' or 'withdrawn'. The results of the present study show that individuals with PIMD show their reactions to stimuli only slightly, so that 'waves' might reflect the optimal alertness pattern for learning and development. Consequently, it is especially important that direct support persons follow and stimulate these individual 'waves' in the activities they provide to their clients. © 2012 John Wiley & Sons Ltd.
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
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.
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 for challenging behaviour in this group. The purpose of this study was twofold: (1) to determine the way staff attribute challenging behaviour in children and adults with PIMD; and (2) to analyse whether more experienced staff attribute challenging behaviour in children and adults with PIMD differently than less experienced staff. In total, 195 direct support staff and an equal number of children and adults with PIMD participated in the study. Direct support staff filled out the Challenging behaviour Attribution Scale (five causal explanatory models of challenging behaviour) to explain challenging behaviour in one individual that they supported. The results show that direct support staff as a whole report the biomedical model as the most plausible explanation for challenging behaviour in children and adults with PIMD. However, in the present study the mean scores on all models are low. This might indicate that a large number of staff found none of the models particularly useful as possible explanations of challenging behaviour in people with PIMD. This could mean that staff have difficulties stating the cause of challenging behaviour in this group. Another possible explanation could be that there is little scientific knowledge about causing and maintaining factors of challenging behaviour in people with PIMD. It could also mean that staff have additional explanations for challenging behaviour in this target group that are not mentioned in the instrument used. Future research should address these issues. No differences were found between more experienced and less experienced direct support staff. Copyright © 2015 Elsevier Ltd. All rights reserved.
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.
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
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
Daniel Paredes Gómez
Full Text Available Lately researchers have shown the importance of humour and its relation to personal well-being and health. The present work deals with the humour of people with intellectual and developmental. One of the objectives of the article is to examine to what extent the humorous reading material intended for a general population with an 11-12 year-old’s reading level is appropriate and useful for persons with intellectual and developmental disabilities. The second purpose of the article is to analyze whether García-Larrauri’s Multidimensional Sense of Humor Model (2006 can be applied to the present investigation’s population and to reveal their preferences between two different reading materials: “only text” or “text with illustrations”.The results indicate that people with intellectual disabilities develop experiences of humour that can be used to enhance their quality of life. A good way to promote this process is using the popular literature of humour adapting it into simple texts and / or accompanying it with drawings.
Feldman, M A; Case, L; Garrick, M; MacIntyre-Grande, W; Carnwell, J; Sparks, B
The present study identified and remediated child-care skill deficits in parents with developmental disabilities to reduce their risk of child neglect. Eleven mothers with developmental disabilities who were considered by social service and child welfare agencies to be providing neglectful child care were found in baseline to have several important child-care skill deficits (e.g., bathing, diaper rash treatment, cleaning baby bottles) compared to nonhandicapped mothers. Parent training (consisting of verbal instructions, pictorial manuals, modeling, feedback, and reinforcement) resulted in rapid acquisition and maintenance of child-care skills in all mothers. Mean percentage correct scores increased from 58% in baseline to 90% in training and 91% in follow-up (M = 31 weeks). The latter two scores compare favorably to the mean score (87%) of 20 nonhandicapped mothers on the same skills. Where observable, parent training was associated with corresponding benefits to the children (e.g., elimination of diaper rash and cradle cap, increased weight gain, successful toilet training). These results indicate that parent training may be a viable option to the removal of the child from the home when parenting skill deficits place the child's well-being in jeopardy.
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.
Braúna, Ana Paula Vasques Sales; Abreu, Mauro Henrique Nogueira Guimarães de; Resende, Vera Lúcia Silva; Castilho, Lia Silva de
The aim of the present study was to investigate risk factors for dental caries in children with developmental disabilities who were treated at a clinical reference service for patients with special needs in Belo Horizonte, MG, Brazil. This is a retrospective cohort study that evaluated 401 dental charts of individuals without dental caries or restorations in their first dental appointment. The dependent variable was the time of occurrence of new dental caries or restorations and was measured in months. Gender, age, International Code of Diseases (ICD), mother´s education, sugar consumption, use of fluoride toothpaste, oral hygiene, mouth breathing, reports of xerostomia, gingival status, use of psychotropic or asthma drugs, and history of asthma were covariates. The Cox proportional hazards regression model was used to estimate the raw and adjusted hazard ratios and their respective 95% confidence intervals. The average time that individuals remained free of dental caries/restoration was equal to 107.46 months (95%CI 95.41 to 119.51), with a median of caries-free children up to 94 months. For each point increase in the scale of sucrose consumption, the increase in caries risk was 1.07 (95%CI 1.01 to 1.15). Sucrose consumption was the only risk factor for dental caries found in this group of individuals 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.
[Purpose] The purpose of the present study was to compare the motor and process skills of children with different developmental disabilities. [Subjects] Thirty-nine children with developmental disabilities participated in this study which was conducted at N hospital in South Korea. [Methods] The motor and process skills of the participants were compared among three different disabilities: pervasive developmental disorder, cerebral palsy, and intellectual disorder. The data were analyzed using descriptive statistics and one-way ANOVA. [Results] Significant differences in motor skills were found among the diagnoses. The cerebral palsy group showed poorer motor skills than the pervasive developmental disability and intellectual disability groups. [Conclusion] The findings have clinical implications for strategies of rehabilitation for children with developmental 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
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.
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…
Ouellette-Kuntz, Hélène; Shooshtari, Shahin; Balogh, Robert; Martens, Patricia
Background: This paper reviews what is currently known about mortality among Canadians with intellectual and developmental disabilities and describes opportunities for ongoing monitoring. Methods: In-hospital mortality among adults with intellectual and developmental disabilities in Ontario was examined using hospital data. Mortality was compared…
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…
Wang, Peishi; Michaels, Craig A.; Day, Matthew S.
Data from 368 families of children with autism and other developmental disabilities in the People's Republic of China were gathered to understand the stresses that families experience and the coping strategies they employ. Chinese families of children with developmental disabilities perceived high levels of stress related to pessimism, child…
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…
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…
Simpson, Cynthia G.; Swicegood, Philip R.; Gaus, Mark D.
With the recent rise of childhood obesity, teaching children with developmental disabilities about healthful lifestyle choices has important implications for special educators. Designing instructional interventions for children with developmental disabilities in the areas of nutrition and weight management poses challenges to educators, who must…
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…
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…
Chu, Judy; Richdale, Amanda L.
Sleep and behavioural difficulties are common in children with developmental disabilities. Mothers often wake and tend to their child when their child is having sleep difficulties. Therefore, mothers of children with developmental disabilities can have poor sleep quality due to these disruptions. The present study investigated the impact of sleep…
Kroeger, K. A.; Sorensen-Burnworth, Rena
The following article reviews the current literature addressing toilet training individuals with autism and other developmental disabilities. The review addresses programs typical to toilet training the developmental disability population, most of which are modeled after the original Foxx and Azrin [Azrin, N. H., & Foxx, R. M. (1971). A rapid…
Bowman, Rachel A.; Scotti, Joseph R.; Morris, Tracy L.
Persons with developmental disabilities are at an increased risk for becoming victims of sexual abuse. Research has revealed that the largest group of identified perpetrators of sexual abuse is developmental disability service providers. The purpose of the present study was to develop, implement, and evaluate the effectiveness of a sexual abuse…
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…
Ryan, Thomas G.; Griffiths, Sarah
The following review of literature illuminates self-advocacy from a North American transformational learning perspective via meaningful impacts, which arise for adults with developmental disabilities, as well as various communities and their members. For adults with developmental disabilities, increased leadership capabilities and the evolution of…
The swimming instruction guide presents teaching techniques and skill progressions for developmentally disabled individuals and includes program development and administrative guidelines. Part 1 discusses swimming and developmentally disabled children, program planning and preparation elements (including pool, scheduling, staff, parents,…
Shannon, Patrick; Tappan, Christine
The purpose of this study was to examine the ability of a Child Protective Services (CPS) screening and investigation process to identify children with developmental disabilities. The study used an emergent design, ethnographic interviews, purposive sampling, inductive data analysis, and grounded theory building. Ethnographic interviews were conducted with foster families, administrators, intake screeners, special investigators, and workers in one local CPS office. Participants expressed concern about the prevalence of children with developmental disabilities, lack of understanding of developmental disabilities, their ability to identify disabilities, and training to improve CPS workers' ability to identify children with developmental disabilities. Findings suggest a need to improve screening, determine strategies to improve interview reliability, develop the capacity to conduct developmental assessments, and improve the referral process for unfounded allegations.
Lim, Chun Yi; Law, Mary; Khetani, Mary; Pollock, Nancy; Rosenbaum, Peter
This study examines caregivers' perceptions of participation patterns and environmental supports and barriers for young children with and without developmental disabilities within their child care/preschool and community settings. The Young Children's Participation and Environment Measure (YC-PEM) was completed by 151 parents of Singaporean children (0-7 years old) with and without developmental disabilities. Setting-specific summary and item-level scores of these children were compared using ANCOVA, Mann-Whitney U, and Pearson chi-square tests. Children with developmental disabilities had significantly lower participation and environment summary scores in both settings as compared with children without developmental disabilities (p children with developmental disabilities. © The Author(s) 2016.
Ginsburg, H P
U.S. education suffers from shortcomings that put even children possessing adequate intellectual abilities at risk for low mathematics achievements. Consequently, identifying and understanding children whose academic failure is influenced by a genuine learning disability requires a complex "developmental" research agenda. This perspective suggests the use of sensitive research methods--clinical interviews, ethnographies--to examine the development of children's construction of knowledge in the context of schooling. Researchers should consider such factors as the adequacy of classroom instruction, the availability in children of informal knowledge, the role of motivation, the effects of specific interventions, the role and operation of different cognitive processes in constructing mathematical understanding, children's difficulties across different areas of mathematics, and the development of children's thinking throughout the school years.
Ward, Karen M.; Atkinson, Julie P.; Smith, Curtis A.; Windsor, Richard
Meaningful relationships with others are often elusive for people with intellectual and developmental disabilities, but no less desired for their full inclusion and participation in society. It is well documented that people with disabilities are victims of interpersonal violence at higher rates than peers without disabilities. This article…
van der Putten, A; Vlaskamp, C; Reynders, K; Nakken, H
Objective: To analyse the psychometric properties of the Top Down Motor Milestone Test (TDMMT), an internationally used instrument in the planning and evaluation of movement-oriented interventions. Setting: Centres for special education in the Netherlands. Subjects: Children with profound multiple
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…
Charles, Jane M
The Federal government reports that 13% of Americans between birth and 18 years of old meet the definition of a child with special health care needs. These children and young adults present unique challenges for both pediatric and general dentists to provide access to the oral health care system--establishing a treatment plan for those with unique medical, behavioral and dental needs and maintaining oral health over the lifetime. The purpose of this article was to describe the characteristics of 3 common developmental disabilities and the challenges these issues present to the oral health care practitioner.
Bossink, Leontien Wm; van der Putten, Annette Aj; Waninge, Aly; Vlaskamp, Carla
To assess the feasibility of conducting a randomised controlled trial to determine the effectiveness of a twenty-week power-assisted exercise intervention in people with profound intellectual and multiple disabilities and to evaluate the potential beneficial effects of this intervention. Pilot randomised controlled trial. A large-scale twenty-four-hour residential facility in the Netherlands. Thirty-seven persons with profound intellectual and multiple disabilities. Participants in the intervention group received a power-assisted exercise intervention three times a week for thirty minutes over a twenty-week period. Participants in the control group received care as usual. Trial feasibility by recruitment process and outcomes completion rates; intervention feasibility by programme compliance rates; potential outcomes by functional abilities, alertness, body composition, muscle tone, oxygen saturation, cardiovascular fitness and quality of life. Thirty-seven participants were recruited ( M age = 32.1, SD = 14.6) and were randomly allocated to intervention ( n = 19) and control ( n = 18) groups. Programme compliance rates ranged from 54.2% to 97.7% with a mean (SD) of 81.5% (13.4). Oxygen saturation significantly increased in the intervention group. Standardised effect sizes on the difference between groups in outcome varied between 0.02 and 0.62. The power-assisted exercise intervention and the trial design were feasible and acceptable to people with profound intellectual and multiple disabilities living in a residential facility. This pilot study suggests that the intervention improves oxygen saturation, but further implementation with the aim of improving other outcomes should be considered with caution.
Lancioni, Giulio E; Singh, Nirbhay N; O'reilly, Mark F; Sigafoos, Jeff; De Pace, Claudia; Chiapparino, Claudia; Ricci, Irene; Navarro, Jorge; Addante, Luigi M; Spica, Antonella
OBJECTIVE. To evaluate technology-assisted programmes for enabling a woman and a man with brain injury and profound multiple disabilities to acquire leisure engagement. METHOD. The technology for the woman (Study I) involved a portable computer with mouse, a Clicker 4 software package, a touch/pressure microswitch, and an interface to connect the Clicker with the microswitch. This technology allowed the woman to choose with a simple hand response among four stimulus categories (e.g., watching a film and interacting with others), each of which included several alternatives. The technology for the man (Study II) involved a computer-based choice system that allowed him to select preferred songs through a microswitch-aided finger-movement response. RESULTS. Data showed that the two participants learned to use the technology available and selected among the stimulus events thus reaching positive leisure engagement. CONCLUSION. Technology-assisted programmes may provide persons with acquired brain injury and multiple disabilities leisure engagement opportunities.
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.
Lang, R.; White, P.J.; Machalicek, W.A.; Rispoli, M.; Kang, S.Y.; Aquilar, J.; O'Reilly, M.F.; Sigafoos, J.; Lancioni, G.E.; Didden, H.C.M.
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
Toys help children in mastering developmental tasks. This study investigated toy effect on children with developmental disabilities as they engage in using ordinary and adaptive toys. A single-subject design was used to identify the effects on their toy play abilities. Differences in toy effects between playing ordinary and adaptive toys were…
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…
Brosnan, Julie; Healy, Olive
Aggression can present as a significant problem behavior in individuals with a diagnosis of developmental disability. Much research has focused on the prevalence of aggression in individuals with varying degrees of severity of intellectual disability (AD), autism spectrum disorders (ASD) and co-morbidity of ID and ASD. Research has also focused on…
A study of seven adults with developmental disabilities found that they commonly spent time in places designated for people with disabilities versus the general public, in public versus private places, and in places characterized by business transactions versus social interactions. Strategies for increasing opportunities for positive community…
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…
Stewart, Catherine Carolyn
A qualitative, interdisciplinary study was undertaken to examine the experiences of mothers of children with developmental disabilities who were sexually abused. In-depth interviews were conducted with four mothers, their children, and the professionals involved with each case. The dual impact of caring for a child with a disability together with…
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…
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…
Coyne, Peggy; Evans, Miriam; Karger, Joanne
Universal Design for Learning (UDL) has been shown to have benefits for students with disabilities. However, little is known about its potential to support literacy for students with intellectual and developmental disabilities (IDD). This qualitative study explored (a) to what extent students with IDD are able to use Udio, an online UDL literacy…
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…
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…
Sandman, Curt A.; Touchette, Paul; Lenjavi, Mohammed; Marion, Sarah; Chicz-DeMet, Aleksandra
Relations between self-injurious behavior (SIB), the hypothalamic-pituitary-adrenal (HPA) stress axis, and response to an opiate antagonist were examined in 31 individuals with severe/profound neurodevelopmental disabilities. A significant number of subjects reduced SIB after receiving naltrexone supporting reports that the HPA axis is disturbed…
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
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.
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.
Seliner, Brigitte; Latal, Beatrice; Spirig, Rebecca
The aim of this study was to assess the effectiveness of a family-centered care (FCC) intervention provided by an advanced practice nurse (APN) for parents of children with profound disabilities undergoing surgery. In a quasi-experimental design, we used the MPOC-20 to assess satisfaction with FCC and interviews to identify potential mechanisms for improving satisfaction. There was a positive effect on the MPOC-20 domain "general information," albeit with a small effect size (Cohen's d = 0.35). The interviewed parents expected additional support. Emphasis should be placed on providing comprehensive care coordination by an experienced APN. Shared care management is crucial in improving FCC. © 2017 Wiley Periodicals, Inc.
Flynn, Samantha; Vereenooghe, Leen; Hastings, Richard P; Adams, Dawn; Cooper, Sally-Ann; Gore, Nick; Hatton, Chris; Hood, Kerry; Jahoda, Andrew; Langdon, Peter E; McNamara, Rachel; Oliver, Chris; Roy, Ashok; Totsika, Vasiliki; Waite, Jane
Mental health problems affect people with intellectual disabilities (ID) at rates similar to or in excess of the non-ID population. People with severe ID are likely to have persistent mental health problems. In this systematic review (PROSPERO 2015:CRD42015024469), we identify and evaluate the methodological quality of available measures of mental health problems or well-being in individuals with severe or profound ID. Electronic searches of ten databases identified relevant publications. Two reviewers independently reviewed titles and abstracts of retrieved records (n=41,232) and full-text articles (n=573). Data were extracted and the quality of included papers was appraised. Thirty-two papers reporting on 12 measures were included. Nine measures addressed a broad spectrum of mental health problems, and were largely observational. One physiological measure of well-being was included. The Aberrant Behavior Checklist, Diagnostic Assessment for the Severely Handicapped Scale-II and Mood, Interest and Pleasure Questionnaire are reliable measures in this population. However, the psychometric properties of six other measures were only considered within a single study - indicating a lack of research replication. Few mental health measures are available for people with severe or profound ID, particularly lacking are tools measuring well-being. Assessment methods that do not rely on proxy reports should be explored further. Copyright © 2017 Elsevier Ltd. All rights reserved.
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).
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
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.
'It's pretty hard with our ones, they can't talk, the more able bodied can participate': staff attitudes about the applicability of disability policies to people with severe and profound intellectual disabilities.
Bigby, C; Clement, T; Mansell, J; Beadle-Brown, J
The level of resident's adaptive behaviour and staff facilitative practices are key sources of variation in outcomes for residents in community-based residential services. The higher the resident support needs the poorer their outcome. Although substantial investment has been made in values-based training for staff, their attitudes and the impact of these on practice is largely unexplored. The first study used ethnographic and action research methods to examine the daily lives of 25 residents with severe and profound intellectual disabilities (ID), who lived in five small group homes, and the attitudes of the staff supporting them. Thematic analysis of the data led to a proposition that although staff accept principles of inclusion, choice and participation for people with ID in general, they do not consider it feasible to apply these to the people with severe and profound ID to whom they provide support. The findings from a second study that used a group comparison design and administered a short questionnaire about staff attitudes to 144 direct-care staff and first-line managers working in disability services confirmed this hypothesis. The study suggests more focused attention is needed to staff understanding the values embedded in current policies and their application to people with more severe disabilities.
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…
Amy Christine Sousa
This article presents three critical case studies that explore the relationship between income and parental involvement in the education of children with developmental disabilities. Interviewed as part of a larger study on mothering children with developmental disabilities, Joy, Jackie, and Maya are low income mothers of children with severe developmental disabilities living in New Hampshire. These women describe carefully planned parenting practices designed to foster child development, whic...
Noel, Valerie A; Oulvey, Eugene; Drake, Robert E; Bond, Gary R
Youth with developmental and psychiatric disabilities encounter significant vocational challenges, even when they receive supported employment services. We examined the barriers to employment for 280 transition-age youth with disabilities enrolled in supported employment in eight community rehabilitation centers. Employment team members identified each youth's top three barriers to employment using a 21-item checklist. Lack of work experience, transportation problems, and program engagement issues represented common barriers for both youth with developmental disabilities (53, 36, and 25%) and youth with psychiatric disabilities (20, 33, and 26%). Additional common barriers among youth with developmental disabilities included cognitive problems (32%) and lack of social skills (23%) and among youth with psychiatric disabilities included poor control of psychiatric symptoms (23%). Despite receiving evidence-based employment services, youth with disabilities encounter many barriers to employment. Awareness of typical barriers for transition-age youth, including those specific to different disability groups, may help employment programs anticipate challenges and develop strategies that avoid these barriers and their effects on employment opportunities.
Finlay, W M L; Antaki, Charles; Walton, Chris; Stribling, Penny
Games between staff and people with intellectual disabilities serve to promote social engagement and inclusion. However, when the person has limited and idiosyncratic communicative abilities, it may be hard to gauge what his/her own view of the matter is. We examine video-taped records of two episodes in which a staff member of a group home prompted a resident with profound intellectual disabilities to play a verbal and a non-verbal 'game'. We examine how the staff member in these two cases designs her actions to solve the dilemma she faces between, on the one hand, abandoning an activity when the resident does not provide clear indications that she/he wants to continue or, on the other hand, persisting with it until the resident begins to enjoy it or, at least, participate more fully. The solution lies in a pervasive institutional practice: treat resistance or ambiguity as temporary reluctance. We discuss these interactions as examples of how principles of empowerment, inclusion and independence play out in the details of everyday interaction.
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
Lancioni, G E; Cuvo, A J; O'Reilly, M F
This paper was to provide an overview of the research studies on snoezelen with people with developmental disabilities and dementia. Computerized and manual searches were carried out to identify the aforementioned studies. Within-session, post-session, and longer-term effects of snoezelen were examined. Twenty-one research studies were identified, 14 concerning people with developmental disabilities and seven people with dementia. Of those studies: 14 reported positive within-session effects; four positive post-session effects; and two positive longer-term effects. These findings were discussed in relation to: (1) methodological aspects (weaknesses) of the studies; (2) the cost of arranging a snoezelen programme and possibilities of reducing the range of stimuli available in the programme; and (3) some research issues for advancing the understanding and effectiveness of intervention programmes with people with developmental disabilities and dementia.
Patel, Isha; Erickson, Steven R; Caldwell, Cleopatra H; Woolford, Susan J; Bagozzi, Richard P; Chang, Jongwha; Balkrishnan, Rajesh
The prevalence of diabetes mellitus is high among patients with developmental disabilities (cerebral palsy, autism, Down's syndrome and cognitive disabilities). The purpose of this study was to examine the racial health disparities in medication adherence and medication persistence in developmentally disabled adults with type 2 diabetes enrolled in Medicaid. This was a retrospective cohort study using the MarketScan(®) Multi-State Medicaid Database. Adults aged 18-64 years with a prior diagnosis of a developmental disability (cerebral palsy/autism/down's/cognitive disabilities) and a new diagnosis of type 2 diabetes enrolled in Medicaid from January 1, 2004 and December 31, 2006, were included. Adults were included if they had a continuous enrollment for at least 12 months and were excluded if they were dual eligible. Anti-diabetes medication adherence and diabetes medication persistence were measured using multivariate logistic regression and the Cox-proportional hazard regression, respectively. The study population comprised of 1529 patients. Although overall diabetes medication adherence in this population was optimal, African Americans had significantly lower odds (25%) of adhering to anti-diabetes medications compared to Caucasians (OR = 0.75, 95% CI = 0.58-0.97, P medication adherence among Medicaid enrollees with developmental disabilities (DD). Studies conducted in the future should examine predictors that impact access to care, availability of primary and specialized care, social support as well as beliefs of racial minority populations with developmental disabilities and chronic conditions like diabetes to optimize medication use outcomes in this especially vulnerable population. Copyright © 2015 Elsevier Inc. All rights reserved.
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.
Nijs, S; Vlaskamp, C; Maes, B
The multiple and complex disabilities of persons with profound intellectual and multiple disabilities (PIMD) form a barrier for peer interactions and peer-directed behaviours. In this study, we further explore the nature of peer-directed behaviours in persons with PIMD and its relationship with social scaffolding behaviour of direct support workers (DSWs). Fourteen dyads of children with PIMD, who knew each other for at least 12 months, participated. They were sitting in close proximity while they were filmed with and without the presence of the DSW. Video recordings were coded continuously making use of observation schemes for the peer-directed behaviours of the children and the peer interaction influencing behaviours of the DSW. Significantly more singular peer-directed behaviour (without DSW: 18.00%; with DSW: 3.81%) was observed than multiple peer-directed behaviour (without DSW: 4.01%; with DSW: 0.52%). The amount of time the singular and multiple peer-directed behaviours were observed was significantly lower in the presence of a DSW. When the DSW shows peer interaction influencing behaviour, it was mostly social scaffolding behaviour (2.17%). The conditional probability of observing social scaffolding behaviour in the 10 s following on singular peer-directed behaviour was 0.02 with a Yule's Q of 0.04 and following on multiple peer-directed behaviour 0.04 with a Yule's Q of 0.33. The way in which peer interactions in children with PIMD are defined could have an impact on the amount of observed peer-directed behaviours and on the effect of the social scaffolding behaviours presented by DSW. © 2015 John Wiley & Sons Ltd.
Magana, Sandra; Parish, Susan L.; Rose, Roderick A.; Timberlake, Maria; Swaine, Jamie G.
We examined racial and ethnic disparities in quality of care for children with autism and other developmental disabilities and whether disparities varied for children with autism compared to children with other developmental disabilities. Analyzing data from the National Survey of Children with Special Health Care Needs (N = 4,414), we compared…
It is very important for individuals with all kinds of developmental disabilities to learn skills in order to be independent at home. The purposes of the study were twofold; (1) to examine the effectiveness of caregiver-delivered home-based instruction using simultaneous prompting to children with moderate developmental disabilities on teaching…
Gardner, Stephanie J.; Wolfe, Pamela S.
A primary goal of instruction for students with developmental disabilities is to enhance their future quality of life by promoting skill acquisition, which will enable them to live, function, and participate in the community. One instructional method that can help students with developmental disabilities improve independence in performing daily…
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…
Parish, Susan; Magana, Sandra; Rose, Roderick; Timberlake, Maria; Swaine, Jamie G.
This study examines access to, utilization of, and quality of health care for Latino children with autism and other developmental disabilities. We analyze data from the National Survey of Children with Special Health Care Needs (N = 4,414 children with autism and other developmental disabilities). Compared with White children, Latino children with…
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.
Meinzen-Derr, Jareen; Wiley, Susan; Grether, Sandra; Choo, Daniel I.
The number of children receiving cochlear implants (CIs) with significant disabilities in addition to their deafness has increased substantially. Unfortunately, children with additional disabilities receiving CIs have largely been excluded from studies on cochlear implant outcomes. Thus limited data exists on outcomes in this population to guide…
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…
Deckers, Stijn R. J. M.; De Moor, Jan M. H.; Van der Burg, Jan J. W.
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 in these interventions are available. The aim of…
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…
Rimmer, J. H.; Yamaki, K.; Davis Lowry, B. M.; Wang, E.; Vogel, L. C.
Background: To explore the prevalence of obesity and related secondary conditions associated with obesity in adolescents with intellectual/developmental disabilities (IDD). Methods: In total, 461 parents of adolescents with IDD (M = 14.9 year, SD = 1.9) across 49 US states completed a web-based survey containing questions related to their child's…
Moore, Marie L.
Three demonstration models of advocacy programs for developmentally disabled children and their families are reviewed by the United Cerebral Palsy Associations, Inc. In a general summary statement, advocacy is defined as responsibility for seeing that legal and human rights are met; the history, rationale, and future plans for the 5-year Child…
Hosp, John L.; Hensley, Kiersten; Huddle, Sally M.; Ford, Jeremy W.
The purpose of this study was to provide preliminary evidence of the criterion-related validity of curriculum-based measurement (CBM) for reading, mathematics, and written expression with postsecondary students with intellectual and developmental disabilities (ID). The participants included 41 postsecondary students with ID enrolled in a 2-year…
Magaña, Sandra; Parish, Susan; Morales, Miguel A.; Li, Henan; Fujiura, Glenn
Racial and ethnic health disparities are a pervasive public health problem. Emerging research finds similar health disparities among people with intellectual and developmental disabilities (IDD) compared to nondisabled adults. However, few studies have examined racial and ethnic health disparities among adults with IDD. Using national data, we…
Hicks, S. Christy; Rivera, Christopher J.; Patterson, Dawn R.
The acquisition of receptive and expressive language skills by students with autism and developmental disabilities (DD) is often delayed, thus making the process of communicating with others challenging. Some students develop language skills incidentally through conversations with their families and peers, but others require instruction in…
Neill, John C.; Alvarez, Norberto
Differential diagnosis of epilepsy versus pseudoepileptic seizures in the developmentally disabled by use of an eight-channel radiotelemetered electroencephalograph-video recording system suggested that traditional diagnosis on the basis of clinical description, interictal electroencephalogram, and medical history may be inaccurate. (Author/DB)
Roberts, Celeste; Yoder, Paul J.; Kennedy, Craig H.
We studied possible relations between seizures and problem behavior in 3 adults with developmental disabilities. Each person was observed for between 56 and 92 days to record occurrences of seizures and problem behavior. Results of our descriptive analysis indicated an association between seizures and problem behavior for each participant. For…
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…
Carr, Edward G.; Owen-DeSchryver, Jamie S.
There is growing interest in the role that physical illness and pain might play in exacerbating problem behavior in individuals with developmental disabilities. Assessment of these factors, however, is often difficult since many individuals have minimal verbal communication skills. In response to this difficulty, we developed a sequential method…
Marfo, Kofi, Ed.
Examined are the interactions of parents and their children with developmental disabilities, focusing on the following aspects: social, emotional, language, communication, clinical, educational, and methodological. A partial listing of contents follows: "Determinants of Parent and Child Interactive Behavior" (Carl Dunst and Carol…
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.…
Ward, Karen M.; Bosek, Rebecca L.
This article describes Behavioral Risk Management (BRM), a community-based, wrap-around model, that incorporates both internal and external management strategies to meet the unique needs of adolescent and adult males with developmental disabilities who exhibit inappropriate or offensive sexual behaviors. Key components of BRM are discussed, along…
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,…
Sigafoos, Jeff; O'Reilly, Mark; Cannella, Helen; Upadhyaya, Megha; Edrisinha, Chaturi; Lancioni, Giulio E.; Hundley, Anna; Andrews, Alonzo; Garver, Carolyn; Young, David
We evaluated the use of a video prompting procedure for teaching three adults with developmental disabilities to make popcorn using a microwave oven. Training, using a 10-step task analysis, was conducted in the kitchen of the participant's vocational training program. During baseline, participants were instructed to make popcorn, but were given…
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…
Hollway, Jill A.; Aman, Michael G.
Sleep disturbance is a common problem in children with developmental disabilities. Effective pharmacologic interventions are needed to ameliorate sleep problems that persist when behavior therapy alone is insufficient. The aim of the present study was to provide an overview of the quantity and quality of pharmacologic research targeting sleep in…
Keenan, Ruth A.; Wild, Matt R.; McArthur, Irene; Espie, Colin A.
Background: This exploratory study investigated the relationships between illness beliefs and treatment acceptability among parents of children with a developmental disability living at home who had sleep onset or maintenance problems. Materials and Methods: A within-subject correlational design was employed. The parents of 58 children each…
Breau, Lynn M.; Camfield, Carol S.
Both chronic pain and sleep problems are common for children with intellectual and developmental disabilities (IDD). Although one study has revealed a relationship between having a medical condition and sleep problems in this population, the role of pain was not examined independently. Thus, the goal of this study was to clarify the specific role…
Handleman, Jan S.; Harris, Sandra L.
There is increasing evidence that Applied Behavior Analysis (ABA) is an effective, and often superior, method to teach children with Autism Spectrum Disorders ASD), than other methods. The Douglass Developmental Disabilities Center of Rutgers University (DDDC) has been using ABA for more than thirty years to teach toddlers, young children,…
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
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
Viecili, Michelle A.; MacMullin, Jennifer A.; Weiss, Jonathan A.; Lunsky, Yona
This study examined predictors of interest in the future provision of clinical services to people with developmental disabilities by Canadian graduate students in psychology. Utilizing a cross-sectional survey, 458 psychology students from clinical, clinical neuropsychology, and counseling psychology programs from across Canada provided…
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,…
Parish, Susan L.; Rose, Roderick A.; Luken, Karen; Swaine, Jamie G.; O'Hare, Lindsey
Background: Women with developmental disabilities are much less likely than nondisabled women to receive cervical and breast cancer screening according to clinical guidelines. One barrier to receipt of screenings is a lack of knowledge about preventive screenings. Method: To address this barrier, we used a randomized control trial (n = 175 women)…
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…
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,…
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,…
Dixon, Dennis R.; Bergstrom, Ryan; Smith, Marlena N.; Tarbox, Jonathan
Safety skills are an important but often neglected area of training for persons with developmental disabilities (DD). The present study reviewed the literature on teaching safety skills to persons with DD. Safety skills involve a variety of behaviors such as knowing how to cross the street or what to do in case of a house fire. A number of studies…
McAdam, David B.; Sherman, James A.; Sheldon, Jan B.; Napolitano, Deborah A.
The consumption of nonfood items (i. e., pica) frequently occurs in persons with developmental disabilities. Pica may result in the puncture or blockage of the digestive tract, infestation by gastrointestinal parasites, and can interfere with an individuals daily learning, occupational performance, and quality of life. Twenty-six published studies…
Call, Nathan A.; Simmons, Christina A.; Mevers, Joanna E.; Alvarez, Jessica P.
Pica is a potentially deadly form of self-injurious behavior most frequently exhibited by individuals with developmental and intellectual disabilities. Research indicates that pica can be decreased with behavioral interventions; however, the existing literature reflects treatment effects for small samples (n = 1-4) and the overall success of such…
Heller, Tamar; Kramer, John
This study examined factors influencing involvement of siblings of individuals with developmental disabilities in future planning and their expectation of future caregiving. The sample consisted of 139 adult siblings recruited from an online sibling list and a sibling conference. Results indicated that few families made plans or involved siblings…
Heiskala, Hannu; Tokola, Ritta; Tammisto, Paavo; Kaski, Markus
A study investigated the prevalence of carbamazepine- or oxcarbazepine-induced hyponatraemia and leucopenia in 334 Finnish individuals with developmental disabilities. Medication with these drugs resulted in significantly lower levels of serum sodium and counts of blood leucocytes. Because of difficulties in expressing their symptoms, this…
Nissinen, M J; Gylling, H; Kaski, M; Tammisto, P; Mieskonen, S; Ignatius, J; Miettinen, T A
Smith-Lemli-Opitz syndrome (SLOS) is an inherited disorder of cholesterol metabolism in which 7- and 8-dehydrocholesterols are accumulated in blood and tissues. Diagnosis of SLOS and other disorders in cholesterol metabolism (eg, cerebrotendinous xanthomatosis, phytosterolemia, desmosterolosis, and X-linked dominant Conradi-Hünermann-Happle syndrome) can be performed by gas-liquid chromatographic analysis of serum sterols. To elucidate their involvement in developmental disability, we evaluated serum sterols in two study groups: developmentally disabled subjects in long-term care (N = 322) and newborns and young children (N = 49) with features of SLOS in the Finnish population of 5 million. Only 1 SLOS case (type II) was found from among the 49 children. Seven additional adult cases (type I) with a wide range of clinical features and the serum sterol abnormalities characteristic of SLOS were detected from among the developmentally disabled subjects. The frequency of SLOS in the latter group was relatively high (7 in 322). No other hereditary sterol disorders were found, but two subgroups with low serum cholesterol precursor sterols and high serum plant sterols were identified. Several subjects, including the 7 SLOS patients, used ample medication and had abnormalities in serum sterol concentrations. Thus, among the subjects taking melperone, a high serum delta8-cholestenol level suggests an interference by the drug with cholesterol synthesis. Our results emphasize the importance of analyzing the serum sterols of developmentally disabled subjects to diagnose SLOS and of finding putative undiagnosed disorders in sterol metabolism associated with these clinical conditions.
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…
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.
This article examines results from a consumer and caregiver-directed care pilot program for families with adults with developmental disabilities. Surveys were administered to 50 caregivers and three project coordinators, and focus groups were conducted with 44 individuals, including caregivers, consumers, and support coordinators. Significant pre-…
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…
Luiselli, James K.
Therapeutic intervention to treat chronic food refusal in two children with multiple developmental disabilities consisted of elimination of feeding "demands" that provoked child agitation, incorporation of sensory stimulation as contingent reinforcement, and gradual introduction of the requirements for oral consumption. Consistent oral…
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®…
Klein, Tanja; Gelderblom, Gert Jan; de Witte, Luc; Vanstipelen, Silvie
Research shows a reduced playfulness in children with developmental disabilities. This is a barrier for participation and children's health and wellbeing. IROMEC is a purposely designed robot to support play in impaired children. The reported study evaluates short-term effects of the IROMEC robot toy supporting play in an occupational therapy intervention for children with developmental disabilities. Two types of play intervention (standard occupational therapy versus robot-facilitated play intervention) were compared regarding their effect on the level of playfulness, on children's general functional development, goal achievement as well as the therapist's evaluation of the added value of a robot-facilitated play intervention. Three young children took part in this single-subject design study. Evaluation was performed through Test of Playfulness (ToP), the IROMEC evaluation questionnaire and qualitative evaluation by the therapists. Results confirmed the IROMEC robot did partly meet the needs of the children and therapists, and positive impact on TOP results was found with two children. This suggests robotic toys can support children with developmental disabilities in enriching play. Long term effect evaluation should verify these positive indications resulting from use of this innovative social robot for children with developmental disabilities. But it also became clear further development of the robot is required. © 2011 IEEE
Rueda, Robert; Martinez, Irene
Potential barriers related to the participation of Latino families in programs addressing the needs of individuals with severe handicaps are discussed. A successful education and training activity for Latino families with children with developmental disabilities, which provides a family focus in the family's own language and integrates relevant…
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…
Shooshtari, Shahin; Brownell, Marni; Dik, Natalia; Chateau, Dan; Yu, C. T.; Mills, Rosemary S. L.; Burchill, Charles A.; Wetzel, Monika
In this population-based study, prevalence of depression was estimated and compared between children with and without developmental disability (DD). Twelve years of administrative data were linked to identify a cohort of children with DD living in the Canadian province of Manitoba. Children in the study cohort were matched with children without DD…
Glidden, L. M.; Billings, F. J.; Jobe, B. M.
Background: 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…
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…
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,…
Browder, Diane M.; Trela, Katherine; Courtade, Ginevra R.; Jimenez, Bree A.; Knight, Victoria; Flowers, Claudia
This study evaluated strategies to teach secondary math and science content to students with moderate and severe developmental disabilities in a quasiexperimental group design with special education teachers randomly assigned to either the math or the science treatment group. Teachers in the math group implemented four math units representing four…
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
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…
This study investigated the influences of children's adaptive skills, problem behaviors, and parent support systems (informal support and formal professional support) on maternal well-being (health and stress) in Taiwanese mothers of young children with developmental disabilities. The study examined the moderating effects of formal support and…
Hall, Allyson; Wood, David; Hou, Tao; Zhang, Jianyi
Individuals living with intellectual and developmental disabilities face complex medical problems. Primary care physicians tend to provide basic medical care, serving as a base through which other forms of care can be accessed. In this study we describe patterns of primary care utilization among adults enrolled on the Florida Medicaid's Home and…
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
Williams, Marian E.; Wheeler, Barbara Y.; Linder, Lisa; Jacobs, Robert A.
When establishing eligibility for developmental disability (DD) services, definitions of specific diagnostic conditions, such as autism, impact policy. Under the Medicaid home and community-based waiver program, states have discretion in determining specific program or service eligibility criteria, the nature of supports to be provided, and the…
Woods-Groves, Suzanne; Hua, Youjia; Therrien, William J.; Kaldenberg, Erica R.; Kihura, Rudia W.; Hendrickson, Jo M.
This study examined the efficacy of the EDIT Strategy on proofreading skills of postsecondary individuals who attended a campus-based college program for students with developmental disabilities. A random assignment to treatment or control groups and a pre- and posttest with maintenance follow-up design were employed. The EDIT Strategy was taught…
Woods-Groves, Suzanne; Hua, Youjia; Ford, Jeremy W.; Neil, Katelyn M.
In this study we investigated an editing strategy to develop effective proofreading skills (i.e., mechanics and substantive revisions) within electronic texts through an experimental pre- and posttest group design with random assignment. Fifteen college students with intellectual and developmental disabilities participated in this investigation.…
This study examined whether teaching in a community arts organization that provides services for people with developmental disabilities enabled preservice art teachers to better understand diverse contexts of art programs and the benefits of teaching the arts to others. Through this activity, the author also examined whether preservice art…
Cocks, E.; Boaden, R.
Background: The Personalised Residential Supports (PRS) Project provided detailed information about the nature, purposes and outcomes of PRS from the perspectives of key stakeholder groups including people with developmental disabilities, family members and service providers. Although these forms of support have developed over the past two…
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…
Virués-Ortega, Javier; Pritchard, Kristen; Grant, Robin L.; North, Sebastian; Hurtado-Parrado, Camilo; Lee, May S. H.; Temple, Bev; Julio, Flavia; Yu, C. T.
Individuals with intellectual or developmental disabilities are able to reliably express their likes and dislikes through direct preference assessment. Preferred items tend to function as rewards and can therefore be used to facilitate the acquisition of new skills and promote task engagement. A number of preference assessment methods are…
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…
Rinald, Katherine; Mirenda, Pat
Individuals with developmental disabilities often experience challenges in acquiring toileting skills, which highlights a need for effective toilet training strategies that can be readily disseminated to caregivers. The purpose of this multiple baseline study was to evaluate the effectiveness of a modified rapid toilet training workshop provided…
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…
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…
Woods-Groves, Suzanne; Therrien, William J.; Hua, Youjia; Hendrickson, Jo M.
This study investigated the efficacy of a writing (ANSWER) strategy to improve the essay test responses of students who were enrolled in a campus-based, postsecondary education program for individuals with developmental disabilities. Random assignment to treatment or control groups and a pre- and posttest design were employed. Students used the…
Flores, Margaret M.; Ganz, Jennifer B.
This study investigated effects of a Direct Instruction reading comprehension program implemented with students with autism spectrum disorders (ASD) and developmental disabilities (DD). There is little research in the area of reading comprehension for students with ASD and no research as to the effectiveness of reading comprehension Direct…
Glidden, L. M.; Natcher, A. L.
Background: Parents rearing children with developmental disabilities encounter stressors that require coping and adaptation. In Glidden et al. 2006, the use of problem-focused coping strategies was more often associated with positive adjustment outcomes than was the use of emotion-focused coping strategies, and parental personality was shown to…
Sigafoos, Jeff; And Others
Five teachers serving 26 children (ages 3-15) with developmental disabilities received training on creating opportunities for requesting (missing item, interrupted chain, delayed assistance). The strategy was effective in helping teachers increase the number of functional communication requesting opportunities and the number of correct student…
Nakazono, Shogo; Kobori, Satoshi
The button-press task means that the subject observes a moving target and presses a button to stop it when the target enters a specified area on a computer display. Subjects perform normal task, suppressed task and delayed task. In the suppressed task, the moving target disappears at some point during the trial. In the delayed task, there is some lag time between the time of pressing button and of stopping target. In these tasks, subjects estimate the movement of the target, and press the button considering his/her own reaction time. In our previous study, we showed that cognitive and motor function was able to be evaluated by these tasks. In this study, we examined error data of children with developmental disabilities to evaluate the cognitive function, and investigated the learning processes. Moreover, we discussed the developmental stages by comparing the children with disabilities to normal control children, and we clarified the behavior characteristics of children with developmental disabilities. Asa result, it was shown that our evaluation method and system for the button-press task were effective to evaluate cognitive ability of children with developmental disabilities.
Hanson, Ronald H.
The enuresis of a hearing-impaired, developmentally disabled adolescent was corrected through the use of an auditory alarm and specific training procedures. The young man progressed from wetting the bed every night to being consistently dry after five weeks of treatment. He has remaind dry for over two years. (Author/CL)
Gross-Tsur, Varda; And Others
This study reports clinical characteristics of developmental right-hemisphere syndrome, a nonverbal learning disability, in 20 children (mean age 9.5 years) who also manifested attention-deficit/hyperactivity disorder, graphomotor problems, and slow performance. Diagnostic criteria included emotional and interpersonal difficulties, paralinguistic…
Browder, Diane; Ahlgrim-Delzell, Lynn; Flowers, Claudia; Baker, Joshua
This study evaluated the effectiveness of a multicomponent early literacy curriculum that included phonics and phonemic awareness in comparison to a sight word approach. A total of 93 students with severe developmental disabilities who were enrolled in Grades K through 4 were randomly assigned to either a multicomponent early literacy curriculum…
Mosby, Robert J., Ed.
Described is an interdisciplinary mainstreaming program for individualizing instruction for secondary learning disabled students, utilizing resource facilities in grades 7-9 in eight separate centers throughout Franklin County, Missouri. Aspects of this program--such as the developmental and by-pass strategies of instruction employed to help…
Shooshtari, Shahin; Naghipur, Saba; Zhang, Jin
The authors sought to create a demographic, socioeconomic, and health-related profile of older (40+) Canadian adults with developmental disabilities (DD) residing in their communities, and to enhance current knowledge of their unmet health and social support services needs. They provide a secondary analysis of cross-sectional data from the 2001…
Omori, Mikimasa; Yamamoto, Jun-ichi
Japanese students with developmental disabilities often exhibit difficulties in reading, particularly in Kanji (ideogram) reading, and in acquiring the equivalence relations between pictures, written words, and sounds. Previous research suggested that one student with autism could acquire Kanji reading along with equivalence relations through…
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…
Luiselli, James K.; Michaud, Ronald L.
The authors describe behavior modification treatment procedures applied by direct-care staff in a residential school to conrol severe aggression and self-injury in two developmentally disabled, visually handicapped students. Techniques included positive practice overcorrection, verbal command, and response immobilization. (Author/CL)
Wuang, Yee-Pay; Su, Chwen-Yng
The purpose of this study was to examine the measurement properties of the Developmental Test of Visual-Motor Integration (VMI) in children with intellectual disabilities (ID) ages 4-12 years using the dichotomous Rasch model. The VMI was administered individually to 454 children with ID. Rasch analysis was applied to investigate…
Price, Lynda; Patton, James R.
This article explores new connections between the current literature base on adult developmental theory and the field of learning disabilities. Emphasis is on theory and practice in self-determination and adult development. Implications for special education, vocational education, general education, and adult learning are discussed. (Contains…
Scambler, D. J.; Hepburn, S.; Rutherford, M. D.; Wehner, E. A.; Rogers, S. J.
Twenty six children with autism, 24 children with developmental disabilities, and 15 typically developing children participated in tasks in which an adult displayed emotions. Child focus of attention, change in facial tone (i.e., hedonic tone), and latency to changes in tone were measured and summary scores of emotional contagion were created.…
Agran, Martin; Wojcik, Andrew; Cain, Irina; Thoma, Colleen; Achola, Edwin; Austin, Kira M.; Nixon, Cynthia Allen; Tamura, Ronald B.
Although participation in extracurricular activities for students with intellectual and developmental disabilities has been advocated, a limited number of students appear to be involved in such activities. Further, there is little empirical research on how extracurricular activities are valued, supported, and encouraged. This study surveyed a…
Bertelli, Marco O; Munir, Kerim; Harris, James; Salvador-Carulla, Luis
The debate as to whether intellectual disability (ID) should be conceptualized as a health condition or as a disability has intensified as the revision of World Health Organization's (WHO's) International Classification of Diseases (ICD) is being finalized. Defining ID as a health condition is central to retaining it in ICD, with significant implications for health policy and access to health services. The purpose of this paper is to include some reflections on the consensus document produced by the first WHO Working Group on the Classification of MR (WHO WG-MR) and on the process that was followed to realize it. The consensus report was the basis for the development of official recommendations sent to the WHO Advisory Group for ICD-11. A mixed qualitative approach was followed in a series of meetings leading to the final consensus report submitted to the WHO Advisory group. These recommendations combined prior expert knowledge with available evidence; a nominal approach was followed throughout with face-to-face conferences. The WG recommended a synonym set ("synset") ontological approach to the conceptualisation of this health condition underlying a clinical rationale for its diagnosis. It proposed replacing MR with Intellectual Developmental Disorders (IDD) in ICD-11, defined as "a group of developmental conditions characterized by a significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behaviour and skills". The WG further advised that IDD be included under the parent category of neurodevelopmental disorders, that current distinctions (mild, moderate, severe and profound) be continued as severity qualifiers, and that problem behaviours removed from its core classification structure and instead described as associated features. Within the ID/IDD synset two different names combine distinct aspects under a single construct that describes its clinical as well as social, educational and policy utilities. The single
Given the explosion in published behavioral interventions over the past several years, this review highlights the latest trends over the past year (2014) for children with complex learning and developmental needs. There were virtually no rigorous intervention studies published on developmental disorders in which the cause of the disorder is well known. Nearly all studies focus on autism spectrum disorder. Trends over the past year emphasize modular interventions with design improvements including comparisons of two active treatments and larger and more diverse samples. Far more community-implemented treatments on understudied populations were conducted, including minimally verbal children, girls, very young infants, and low-resourced families. Finally, new pilot data on prevention and neural mechanisms were published. An uptick in the number of rigorous tests of different interventions conducted in real-world settings with outcomes focused on core deficits bodes well for wide dissemination and implementation by nonspecialists in the community. Pilot and uncontrolled data on prevention and mechanism await further rigorous testing before conclusions can be drawn.
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).
Dodge, N N; Wilson, G A
This study explored the safety and efficacy of synthetic melatonin in the treatment of sleep problems in 20 children with developmental disabilities, in a randomized, double-blind, placebo-controlled 6-week trial of melatonin versus placebo. All but 2 children fell asleep more quickly when receiving melatonin than placebo. Overall, the greater the sleep latency (time to fall asleep) was at baseline or when receiving placebo, the more pronounced was the decrease in sleep latency with melatonin. The effect of melatonin on sleep latency was significant (P < .05). The duration of sleep while receiving melatonin was significantly greater than baseline (P < .007) but was not significantly different from placebo, and no difference in the number of awakenings was noted. No side effects were reported. Eleven of 18 parents (61%) correctly identified the weeks their child received melatonin. This study suggests that synthetic melatonin reduces sleep latency in children with developmental disabilities.
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.
Taubman, M; Brierley, S; Wishner, J; Baker, D; McEachin, J; Leaf, R B
Group behavioral classroom instruction for children with developmental disabilities has been shown to allow for increased efficiency, approximation to naturalistic arrangements, and enhanced opportunity for interaction, social teaching and observational learning. This study examines the effectiveness of a group instructional extension of one to one discrete trial teaching, which involves the overlapping of trials between students along with the use of sequential and choral group teaching. A multiple baseline design across tasks was employed to examine the effectiveness of the group instructional approach in promoting acquisition of educational skills among preschoolers with autism and other developmental disabilities. A time sample interval assessment of components of the group instruction was also conducted. The approach was demonstrated to consistently increase correct responding across the task areas. Results are discussed in terms of the advantages of the group instructional approach as an adjunct to one to one discrete trial instruction.
McManus, Beth M; Carle, Adam C; Acevedo-Garcia, Dolores; Ganz, Michael; Hauser-Cram, Penny; McCormick, Marie C
Children with developmental disabilities are at risk for secondary complications and lower academic performance, which contributes to lower health and well-being and may be ameliorated by access to special education services. This paper examines state variability in preschool special education participation among a United States population-based cohort with parent-reported developmental delays and disabilities. Analyses explore the extent to which observed variability can be explained by state socio-economic attributes and special education policy and funding. Rates of special education varied significantly across states and were highest in states with least income inequality and lowest in states with most income inequality. Place variation in preschool special education participation stems, in part, from child characteristics, but to a larger extent, from state socio-economic attributes. Copyright © 2011 Elsevier Ltd. All rights reserved.
Matson, Johnny L; Hattier, Megan A; Belva, Brian; Matson, Michael L
Pica is a very serious problem in which an individual ingests substances without nutrition value, such as paper and paint. As this behavior is often life-threatening resulting in surgery, pica has received attention from researchers for several decades. During that time, a number of interventions have been devised, such as behavioral methods (e.g., aversive stimuli, overcorrection, time-out, reinforcement) and biological interventions (e.g., pharmacotherapy, nutritional supplements). This paper is a broad review of the research on treatment studies for this problem, with a focus on persons with autism and/or intellectual disability (ID), which constitutes almost all of the published treatment papers. In addition, strengths and weaknesses of different pica treatments are discussed. Upon review, applied behavior analysis (ABA) was found to have the most robust empirical support to treat this behavior. Most clinicians are drifting away from aversive techniques and relying on more positive procedures to guide their treatment plans. The implications of current status and future directions for research are also addressed. Copyright © 2013 Elsevier Ltd. All rights reserved.
Miller, David T.; Adam, Margaret P.; Aradhya, Swaroop; Biesecker, Leslie G.; Brothman, Arthur R.; Carter, Nigel P.; Church, Deanna M.; Crolla, John A.; Eichler, Evan E.; Epstein, Charles J.; Faucett, W. Andrew; Feuk, Lars; Friedman, Jan M.; Hamosh, Ada; Jackson, Laird; Kaminsky, Erin B.; Kok, Klaas; Krantz, Ian D.; Kuhn, Robert M.; Lee, Charles; Ostell, James M.; Rosenberg, Carla; Scherer, Stephen W.; Spinner, Nancy B.; Stavropoulos, Dimitri J.; Tepperberg, James H.; Thorland, Erik C.; Vermeesch, Joris R.; Waggoner, Darrel J.; Watson, Michael S.; Martin, Christa Lese; Ledbetter, David H.
Chromosomal microarray (CMA) is increasingly utilized for genetic testing of individuals with unexplained developmental delay/intellectual disability (DD/ID), autism spectrum disorders (ASD), or multiple congenital anomalies (MCA). Performing CMA and G-banded karyotyping on every patient
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...
Vogt, Tobias; Schneider, Stefan; Anneken, Volker; Strüder, Heiko K
Research has shown that physical exercise enhances cognitive performance in individuals with intact cognition as well as in individuals diagnosed with intellectual and developmental disabilities. Although well identified in the field of health (for example, the transient hypofrontality theory), the underlying neurocognitive processes in intellectual and developmental disabilities remain widely unclear and thus characterize the primary aim of this research. Eleven adolescents with intellectual and developmental disabilities performed moderate cycling exercise and common relaxation. Cross-over designed, both 10-min meetings were randomly allocated at the same time of day with 24-h time lags in between. Conditions were embedded in ability-modified cognitive performance (decision-making processes). Participants' reaction times and their equivalent neurophysiological parameters were recorded using standard EEG and analyzed (spatial activity, N2). Exercise revealed a decrease in frontal electrocortical activity, most pronounced in the medial frontal gyrus (10%). To that effect, reaction time (pdisabilities; further research is needed to explore possible future effects on enhancing neurocognitive development. Copyright © 2013 Elsevier Ltd. All rights reserved.
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.
Rosenberg, L; Ratzon, N Z; Jarus, T; Bart, O
In light of the International Classification of Functioning, and Health (ICF) model, to assess whether parents of children with mild developmental disabilities perceived various environmental factors as barriers to their child's participation, and whether these factors have a unique contribution to the total explained variance of participation, beyond personal factors. Seventy-nine kindergarten children (mean age 5.20 ± 0.52 years old) with mild developmental disabilities and their parents participated in the study. Three questionnaires measuring the child's participation, performance skills and environmental factors were completed by the parents. Parents perceived environmental factors as slightly restricting to their child's participation. Associations were found between home and education factors and the dimensions of child participation - independence, enjoyment and parental satisfaction. Although parents perceived human environmental factors as more restricting than physical factors at home, regression analysis revealed that the latter was found to affect the child participation dimension of independence beyond the contribution of personal factors. These findings are the first, to our knowledge, to support the contribution of environmental factors to the participation of young children with mild developmental disabilities. The results show that environmental factors have significant slight contribution to child's independence in participation beyond other predictors (i.e. personal factors). Therefore, it is recommended to include environmental restrictions measurement in the child evaluation process to facilitate effective intervention programs. © 2011 Blackwell Publishing Ltd.
Badia, Marta; Orgaz, María Begoña; Verdugo, Miguel Á; Ullán, Ana M; Martínez, Magdalena
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. A cross-sectional design was used with a convenience sample of 125 people, aged 17-65, living in the community. Participants completed the subjective scale of Integral Quality Scale and the Leisure Assessment Inventory in the form of an individual interview. Staff completed the GENCAT Scale. No relationship was found between objective quality of life and leisure participation. However, correlations between some leisure participation dimensions and specific subjective quality of life domains were observed. The results establish a predictive relationship between leisure participation and material, emotional, and physical well-being. Personal and environmental variables analyzed were not found to have a moderating effect on the relationship between leisure participation and quality of life. These findings indicate that some aspects of leisure participation may significantly contribute to enhancing the quality of life of young people and adults with developmental disabilities living in the community. © 2013 John Wiley & Sons Ltd.
,; Nambisan, Priya; Lamkin, Donna; DeLong, Carrie
Telemonitoring is being increasingly used to provide services to patients with developmental disabilities in residential community settings. The objective of this study is to assess the feasibility, benefits and challenges of using telemonitoring for aging patients with developmental disabilities. We also assess the benefits and challenges of telemonitoring for the caregivers of these patients. Focus groups and questionnaire-based surveys were used to collect data from patients and caregivers...
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.
Rillotta, F; Kirby, N; Shearer, J; Nettelbeck, T
Family quality of life (FQOL) is a recent concept in intellectual/developmental disability research. Outcomes for the family are important to the provision of services because families, rather than institutions, are increasingly considered the primary support unit. This article presents Australian findings using the international Family Quality of Life Survey: Main Caregivers of People with Intellectual or Developmental Disabilities (FQOLS-2006). Forty-two South Australian main caregivers of people with an intellectual/developmental disability were interviewed using the FQOLS-2006. The FQOL domains assessed were Health of the Family, Financial Well-being, Family Relationships, Support from Other People, Support from Disability-Related Services, Influence of Values, Careers, Leisure and Recreation, and Community Interaction. Domains were measured in terms of Importance, Opportunities, Attainment, Initiative, Stability and Satisfaction. The FQOLS-2006 asked about the family's practical and emotional Support from Other People together, whereas the current study separated the constructs of practical and emotional support. Questions pertaining to FQOL in the past were also added, in order to gain a broader picture of present FQOL. Results indicated that families considered all the FQOL domains to be important. However, Health, Family Relationships and Financial Well-being were regarded as slightly more important than Practical and Emotional Support from Others. The attainment of Family Relationships, Health, Values, and Leisure and Recreation were rated as quite a bit, but Practical Support from Other People was only rated as a little. Families were generally satisfied with all FQOL domains, but they were satisfied with their Family Relationships and they were neither satisfied or dissatisfied with their Financial Well-being. Results also indicated that there was a need to distinguish between the provision of practical and emotional support from others, because the
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…
Gerber, F.; Carminati, G. Galli
Background: The lack of psychometric measures of psychopathology especially in intellectual disabilities (ID) population was addressed by creation of the Psychiatric Assessment Schedule for Adult with Developmental Disability (PAS-ADD-10) in Moss et?al. This schedule is a structured interview designed for professionals in psychopathology. The…
McFelea, Joni Taylor; Raver, Sharon
This study measured the quality of life of two groups of families with children who had severe developmental disabilities-families whose child lived at home and families whose child lived in a residential facility. Participants were 54 primary caregivers of children who had severe intellectual disabilities and who lacked the ability to both…
Okado, N; Narita, M; Narita, N
Recent studies have demonstrated that biogenic amines have a function of facilitating formation and maintenance of synapses in diverse regions of the central nervous system in developing and adult animals. The normal number of synapses maintained by biogenic amines are crucial to acquire learning and memory. The level of biogenic amines was reported to decrease in the brain by several neurodevelopmental disorders associated with mental retardation and developmental disabilities such as Rett syndrome, autism and Down syndrome. Taken into consideration this fact together with the function of biogenic amines for synapses, the density of synapses appears to decrease considerably in the brains of patients suffered from the neurodevelopmental disorders. The synaptic overproduction during the critical period of development especially 1 year after birth has been considered as a background mechanism to provide plasticity for the developing brain. Synaptic overproduction does not appear to occur in the brains of patients suffered from the neurodevelopmental disorders, which they are observed mental retardation occurring in the first 1 year after birth. Along with the neurodevelopmental disorders, environmental factors (stress, drugs and nutrition) during pre- and post-natal critical developmental periods are known to change levels of biogenic amines in the brain. In fact, maternal stress has been shown to decrease the levels of serotonin and the density of synapses in the hippocampus of the offspring, and they showed developmental disabilities in the spatial learning and memory. A cascade appears to exist from either the child neurological disorders or the environmental factors to mental retardation and developmental disabilities by decreases in the levels of biogenic amines and synaptic density.
Kirkham, Yolanda A; Allen, Lisa; Kives, Sari; Caccia, Nicolette; Spitzer, Rachel F; Ornstein, Melanie P
Demonstrate changes in methods of menstrual suppression in adolescents with developmental disabilities in a recent 5-year cohort compared with an historical cohort at the same hospital. Retrospective cohort study of patients with physical and cognitive challenges presenting for menstrual concerns at an Adolescent Gynecology Clinic between 2006 and 2011 compared with a previous published cohort (1998 to 2003). Three hundred patients with developmental disabilities aged 7.3 to 18.5 years (mean 12.1 ± 1.6) were analyzed. Caregiver concerns included menstrual suppression, hygiene, caregiver burden, and menstrual symptoms. Ninety-five percent of patients had cognitive disabilities, 4.4% had only physical impairments. Thirty-two (31.7) percent of patients presented premenarchally. The most commonly selected initial method of suppression was extended or continuous oral contraceptive pill (OCP) (42.3%) followed by patch (20%), expectant management (14.9%), depot medroxyprogesterone acetate (DMPA) (11.6%), and levonorgestrel intrauterine system (LNG-IUS) (2.8%). Published data from 1998 to 2003 indicated a preference for DMPA in 59% and OCP in 17% of patients. The average number of methods to reach caregiver satisfaction was 1.5. Sixty-five percent of initial methods were continued. The most common reasons for discontinuation were breakthrough bleeding, decreased bone mineral density, or difficulties with patch adherence. Second-choice selections included OCP (42.5%), LNG-IUS inserted under general anesthesia (19.2%), DMPA (17.8%), and patch (13.7%). Since identification of decreased bone mineral density with DMPA and emergence of new contraceptive options, use of extended OCP or patch has surpassed DMPA for menstrual suppression in our patient population. LNG-IUS is an accepted, successful second-line option in adolescents with developmental disabilities. Copyright © 2013 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.
Noelle Denny-Brown; Leah Guanga; Daniella Sehgal
Integrated employment is defined as participation in competitive employment in which people with disabilities work alongside people without disabilities for at least minimum wage. This issue brief describes five states' efforts to increase integrated employment for people with intellectual or developmental disabilities. It discusses barriers that have hindered states' progress toward expanding integrated employment outcomes and highlights lessons that can help other states advance their effor...
Juneja, Monica; Jain, Rahul; Chakrabarty, Biswaroop; Mishra, Devendra; Saboo, Philomina
To study the age at referral, of children with neurodevelopmental disabilities to Child Development and Early Intervention Clinic and compare the neuromorbidity and socio-economic profile of the early and late presenters. This retrospective observational study was conducted at Child Development and Early Intervention Clinic (CDEIC) located in Northern India. Case records of children enroled at CDEIC in last 5 y; with neurodevelopmental disabilities namely Mental Retardation/Global Developmental Delay, Cerebral Palsy, hearing and vision impairment were separated and studied. Two thousand and twenty cases were included in this study. 62.8 % presented before 3 y of age (early presenters) and 37.1 % presented at 3 y or more (late presenters). There was no difference in the overall rates and severity of mental retardation in early and late presenters. The proportion of children with quadriparetic cerebral palsy, hearing impairment, vision impairment and multiple disabilities was significantly more in early presenters. The early presenters had better parental education status, less number of siblings, better immunization status and more were delivered at a hospital and residing in urban areas. Large numbers of children with neurodevelopmental disabilities are referred late for intervention services, leading to loss of opportunity for early intervention. Children with purely mental disability are the ones, most likely to be referred late. Socio-economic differences are significantly contributing to these delayed referrals.
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.......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....
Sappok, T; Schade, C; Kaiser, H; Dosen, A; Diefenbacher, A
Mental disorders are 3-4 times more frequent in individuals with intellectual disabilities than in those without. From a developmental perspective the reason for this high prevalence could be, besides biological aberrations, a personality development with a difference between cognitive and emotional developmental levels. This discrepancy renders the person being highly vulnerable for the onset of problem behaviour and psychiatric disorders. For a proper insight into processes which have led to the disorder, it is necessary to evaluate the level of emotional development. This can be determined by the "schema of emotional development (SEO)" developed by A. Dosen. By means of a case description the authors demonstrate the application of SEO in the assessment and utilization of the concept of the level of emotional development in clinical practice. The knowledge of the level of emotional development contributes to the explaining and understanding of the disorder, and also facilitates the establishment of an integrated diagnosis and the creation of appropriate integrated treatment strategies. Hence, temper tantrums, sleep patterns and mood improved in the case described. Besides biopsychosocial aspects, the developmental aspect, and in particular the level of emotional development should be taken into consideration in the diagnostic work-up and treatment of individuals with intellectual disabilities and mental health problems. The data generated by the SEO may help in understanding the disorder and developing a treatment approach for these individuals. © Georg Thieme Verlag KG Stuttgart · New York.
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.
Maurice-Stam, H; Verhoof, E J; Caron, H N; Grootenhuis, M A
The aim of this study was to investigate whether an unfavourable psychosocial developmental trajectory while growing up with childhood cancer is related to a smaller likelihood of labour participation in adult life. A total of 53 childhood cancer survivors (CCS) with and 313 CCS without disability benefits, and 508 peers from the general Dutch population (reference group) completed the Course of Life Questionnaire (CoLQ) about the achievement of psychosocial developmental milestones. Differences between the three groups were tested by conducting analysis of variance with contrasts (scale scores CoLQ) and logistic regression analysis (individual milestones). Effect sizes and odds ratios were calculated. Compared with the reference group, both CCS with and CCS without benefits reported lower scale scores with respect to social and psychosexual development. CCS with disability benefits had lower social (d = - 0.6; p disability benefits. CCS with disability benefits scored less favourably (p psychosocial milestones whereas the number was only six for those without disability benefits. CCS with an unfavourable developmental trajectory while growing up were more likely to apply for disability benefits in adulthood than CCS with a more favourable development. Early recognition and support are warranted. Further research is needed on risk factors of application for disability benefits. In addition, research should show whether stimulating the achievement of developmental milestones while growing up will create conditions for a better labour market position. Copyright © 2011 John Wiley & Sons, Ltd.
... treatment can help the symptoms. Treatments include physical, speech, and occupational therapy. Special education classes and psychological counseling can also help. NIH: National Institute of Child Health and Human Development
Full Text Available Patients with Autism Spectrum Disorder present with a heterogeneous mix of features beyond the core symptoms of the disorder. These features can be emotional, cognitive or behavioral. Behavioral symptoms often include self-injury, and this may take the form of repetitive skin-picking. The prevalence of skin-picking disorder in Autism is unknown. Skin-picking may lead to significant medical and psychosocial complications. Recent data suggest that behavioral interventions may be more effective than medications at reducing skin-picking in neurotypical patients. In this case, an 11-year-old male with intellectual disability and autistic spectrum disorder, with self-injurious skin-picking, was treated with risperidone with complete resolution of skin-picking symptoms. risperidone has been approved for irritability and aggression in Autistic spectrum disorder, and may be a valuable treatment option for skinpicking in pediatric patients with developmental disabilities.
Quint, Elisabeth H
Most obstetrician-gynecologists will encounter adolescents with disabilities in their practice, because developmental and physical disabilities are common in young patients (8.4%). Reproductive health issues such as puberty, sexuality, and menstruation can be more complicated for teenagers with disabilities and their families as a result of concerns surrounding menstrual hygiene, abuse risk, vulnerability, changes in seizure pattern, and altered mood. Teenagers with disabilities have gynecologic health care needs similar to those of their peers as well as unique needs related to their physical and cognitive issues. The gynecologic health visit for a teenager with disabilities should include an evaluation of the teenager's reproductive knowledge as well as an assessment of her abuse and coercion risk and her ability to consent to sexual activity. The menstrual history is focused on the effects of menstrual cycles on her daily life. Diagnostic testing is not different from other adolescents. Hormonal treatment is often requested by the patient and her family to alleviate abnormal bleeding, cyclic mood changes, dysmenorrhea, or a combination of these, to assist with menstrual hygiene, and to provide contraception. Menstrual manipulation can be used to induce complete amenorrhea, regulate cycles, or decrease regular menstrual flow. However, treatment risks and side effects may have a different effect on the lives of these adolescents. The comfort level of health care providers to respond to the special concerns of adolescents with disabilities is low, and several barriers exist. This review addresses the complex issues of puberty, menstruation, sexuality, abuse, and safety highlighting the distinctive needs of this population. The options and decisions around menstrual manipulation are highlighted in detail.
Rada, Robert E
Gastroesophageal reflux disease (GERD) is a common finding among individuals in our society. Unfortunately, the condition is even more prevalent in individuals with developmental disabilities. There are significant comorbidities that can affect the upper gastrointestinal tract. Erosion of tooth surfaces may be the first comorbidity that is detected in individuals unable to express physical discomfort associated with GERD. The dentist should be aware of these findings and able to refer the patient for medical management. In addition, an awareness of preventive regimens and restorative options is essential in maintaining a healthy dentition for these individuals. ©2013 Special Care Dentistry Association and Wiley Periodicals, Inc.
AI-Dawood, Kasim; Albar, Adnan A.
Information about the extent of additional disabilities presented and experienced by the mentally retarded children is essential for proper health services planning for this group. The objective of this case-control study was to identify the developmental milestones and additional disabilities of mildly mentally retarded male children. Sixty-nine parents of mildly mentally retarded male children (MMR group) and a similar number of matched parents of normal male children (control group) were interviewed and a questionnaire was completed. Generally, the MMR group children smiled, sat, walked, talked and became continent for urine and bowel significantly later than the control group. Additional disabilities in the children of the MMR group were in the form of speech (65%), visual (28%), limb weakness (20%), hearing (16%), convulsive disorder (15%) and other disabilities (10%). Well structured health education and I.Q. screening programs were recommended for early detection of mental retardation and subsequent entry to special education. Institutes for mentally retarded children in the Kingdom need to be better vocationally equipped. The role of Family and Community Physicians in early detection and management was also emphasized. PMID:23012212
McDonald, Katherine E; Stack, Erin
Community-based participatory research (CBPR) seeks to improve the responsiveness of science to community priorities and foster positive community change through equitable research collaborations between scientists and community members. CBPR resonates with disability rights principles, and is increasingly being used in disability research, though there are few studies of its use with people with developmental disabilities. We conducted a prospective qualitative study to explore the experiences of scientists and community members in a multi-year CBPR project with people with developmental disabilities. Over the four project years, we conducted periodic individual interviews and focus groups with members of the CBPR project, and used an inductive thematic analysis to identify and develop relational themes. We identified factors that contributed to the success of the CBPR project and factors that presented challenges to the CBPR project. We also identified potential individual, project, and societal level impacts of the CBPR project. CBPR with people with developmental disabilities is possible and fruitful, and can serve as an effective model for the full inclusion of people with developmental disabilities in science and society at large. Copyright © 2016 Elsevier Inc. All rights reserved.
Saemundsson, S R; Roberts, M W
Self-injurious behavior occurs in conjunction with a variety of psychiatric disorders as well as various developmental disabilities and some syndromes. The behavioral and biochemical aspects of self-injurious behavior are poorly understood and several etiologies have been suggested. Treatments for self-injurious behavior in developmentally disabled individuals fall into three main categories: pharmacological, behavior modification and physical restraints. The dental management of self-injurious behavior is often difficult. Numerous appliances of various design have been reported in the literature. Osteotomies or extraction of the offending teeth may have to be considered if less invasive methods are unsuccessful. A case is reported where a child engaged in tonic lip biting secondary to a neurological and seizure disorder is treated using a removable lip-protruding device. No impression or lab construction is required. The appliance presents minimal interference with oral hygiene procedures and it can be removed and reinserted as needed. We conclude that a removable lip-bumper may be a viable option in treating transient and acute episodes of self-injurious behavior involving the lower lip and buccal mucosa.
Lysaght, Rosemary; Petner-Arrey, Jami; Howell-Moneta, Angela; Cobigo, Virginie
Employment provides an important avenue to social inclusion for most adults. A range of productivity options exist for persons with intellectual and developmental disabilities (IDD) who wish to work, each offering unique challenges relative to inclusion. This qualitative study examined the productivity experiences of people with intellectual and developmental disabilities in Ontario, Canada. A purposive sample of 74 individuals with productivity experiences spanning the spectrum of no employment to community-based jobs was selected from a pool of volunteers recruited through a mailed survey. Semi-structured interviews were conducted with individuals and family members. Interview transcripts were subjected to a team-based analysis using grounded theory methods. Varying needs and interests exist in regard to work. Participants revealed a multitude of factors contributing to inclusion and exclusion through productivity. Productivity, whether paid or unpaid, can be an avenue to social inclusion. The experience of inclusion, particularly of belonging, depends on a successfully negotiated congruence between worker attributes and the social features and demands of the work environment. © 2016 John Wiley & Sons Ltd.
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.
Gevarter, Cindy; O'Reilly, Mark F; Rojeski, Laura; Sammarco, Nicolette; Lang, Russell; Lancioni, Giulio E; Sigafoos, Jeff
Studies that have compared different communication systems for individuals with developmental disabilities were systematically reviewed in an effort to provide information useful for clinical decision making and directions for future research. Specifically, 28 studies that compared (a) non-electronic picture systems to speech generating devices, (b) aided AAC (e.g. picture exchange systems and SGDs) to unaided AAC systems (manual sign), or (c) AAC to speech-language interventions were included in this review. Dependent variables forming the basis for comparison included: (a) effectiveness (e.g. acquisition of systems and/or rate of use), (b) efficiency or rate of skill acquisition (c) participants' preference for systems, (d) occurrence of vocalizations and problem behavior, and (e) generalization across communication partners, settings, and time (i.e. maintenance). Results suggest that clear and consistent differences between communication systems are rare, precluding definitive statements regarding a universal best approach for all people with developmental disabilities. Instead, findings of this review support the consideration of an individual's existing skills, goals and preferences as part of the process of selecting an approach to communication.
Keisling, Bruce L; Bishop, Elizabeth A; Kube, David A; Roth, Jenness M; Palmer, Frederick B
Previous research has demonstrated high satisfaction and perceived relevance of Project DOCC (Delivery of Chronic Care), a parent led curriculum in developmental disabilities, across a sample of medical residents. The influence of such a training program on the clinical practices and professional activities of these residents once they are established in their careers as physicians, however, has not been studied; this was the aim of the present study. An anonymous follow-up survey was designed and disseminated to physicians who participated in Project DOCC during their one-month developmental disabilities rotation as part of their pediatrics or medicine/pediatric residency between 2002 and 2010. Fifty-eight physicians completed the survey. The findings suggest that participation in a parent led curriculum during medical residency had a lasting impact on physicians' relationships with families. Specifically, a majority of the physicians espoused a family-centered approach to care, a sensitivity to the interactional effect that caring for a Child with Special Health Care Needs (CSHCN) has on family members, the need for physicians to have a prominent role in community resource coordination, and the importance of an integrated approach to health care provision. Use of a parent led curriculum as a means to increase the provision of family-centered care by physicians is supported. Copyright © 2016 Elsevier Ltd. All rights reserved.
Marinova-Todd, Stefka H; Colozzo, Paola; Mirenda, Pat; Stahl, Hillary; Kay-Raining Bird, Elizabeth; Parkington, Karisa; Cain, Kate; Scherba de Valenzuela, Julia; Segers, Eliane; MacLeod, Andrea A N; Genesee, Fred
This study aimed to gather information from school- and clinic-based professionals about their practices and opinions pertaining to the provision of bilingual supports to students with developmental disabilities. Using an online survey, data were collected in six socio-culturally and linguistically diverse locations across four countries: the United States, Canada, the United Kingdom, and the Netherlands. In total, 361 surveys were included in the analysis from respondents who were primarily teachers and speech-language pathologists working in schools, daycares/preschools, or community-based clinics. The overall picture that emerged from the data reflected a disconnection between practice and opinion. In general, respondents believed that children with both mild and severe disabilities are capable of learning a second language, although their opinions were more neutral for the latter group. However, children with both mild and severe disabilities who spoke only a minority language at home had less access to services for second language learners than did their typically developing peers, although respondents agreed that such services should be more available. Regardless of clinical group, children who lived in homes where a minority language was spoken were often exposed to, assessed in, and treated in the majority language only; again, respondents generally disagreed with these practices. Finally, second language classes were less available to children in the two disability groups compared to typically developing bilingual children, with general agreement that the opportunity to acquire a second language should be more available, especially to those with mild disabilities. Although the results indicate that there is a considerable gap between current practices and professional opinions, professionals appear to be more supportive of bilingual educational opportunities for these populations than was suggested by previous research. Copyright © 2016 Elsevier Inc. All
Amy Christine Sousa
Full Text Available This article presents three critical case studies that explore the relationship between income and parental involvement in the education of children with developmental disabilities. Interviewed as part of a larger study on mothering children with developmental disabilities, Joy, Jackie, and Maya are low income mothers of children with severe developmental disabilities living in New Hampshire. These women describe carefully planned parenting practices designed to foster child development, which yield both engagement with and strategic disengagement from formal bureaucracies. This is a decided departure from previous theorization on low income mothers' approaches to child development. Grounded analysis of these interview cases suggests that emotion management may be a critical factor in both structuring parental involvement with educational systems as well as enacting class differences within the special education system.
Lin, Chien-Yu; Chang, Yu-Ming
This study uses a body motion interactive game developed in Scratch 2.0 to enhance the body strength of children with disabilities. Scratch 2.0, using an augmented-reality function on a program platform, creates real world and virtual reality displays at the same time. This study uses a webcam integration that tracks movements and allows participants to interact physically with the project, to enhance the motivation of children with developmental disabilities to perform physical activities. This study follows a single-case research using an ABAB structure, in which A is the baseline and B is the intervention. The experimental period was 2 months. The experimental results demonstrated that the scores for 3 children with developmental disabilities increased considerably during the intervention phrases. The developmental applications of these results are also discussed. Copyright © 2014 Elsevier Ltd. All rights reserved.
Tøssebro, Jan; Wendelborg, Christian
This study addresses family structure in families raising a child with disabilities in Norway. The aims are to add to the literature on termination of parental relationships and to explore family research topics that are rarely discussed in disability research, such as cohabitation versus marriage and repartnering. Longitudinal survey data on families of children with intellectual and developmental disabilities who were born 1993-1995 were compared with register data on all families of same-aged children (five waves 1999-2012). Parents of children with disabilities had slightly lower termination rates and formalized their partnerships earlier. Furthermore, the rate of repartnering among divorced/separated mothers of young children with disabilities was similar to that of other mothers but decreases later in the child's life course. Results support the view that findings diverge and are most likely dependent on context. © 2015 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.
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
Cox, Amy L.; Gast, David L.; Luscre, Deanna; Ayres, Kevin M.
The purpose of this study was to evaluate the impact of weighted vests on the amount of time 3 elementary-age students with autism, intellectual disabilities, and sensory processing abnormalities engaged in appropriate in-seat behavior. An alternating treatments design was used to examine the duration of appropriate in-seat behavior under three…
Davis, Tonya N; Machalicek, Wendy; Scalzo, Rachel; Kobylecky, Alicia; Campbell, Vincent; Pinkelman, Sarah; Chan, Jeffrey Michael; Sigafoos, Jeff
Some individuals with developmental disabilities develop inappropriate sexual behaviors such as public masturbation, disrobing, and touching others in an unwanted sexual manner. Such acts are problematic given the taboo nature of the behaviors and the potential for significant negative consequences, such as restricted community access, injury, and legal ramifications. Therefore, it is necessary to equip caregivers and practitioners with effective treatment options. The purpose of this paper is to review studies that have evaluated behavioral treatments to reduce inappropriate sexual behavior in persons with developmental disabilities. The strengths and weaknesses of each treatment are reviewed, and a model for treatment selection is provided.
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.
O'Neill, Linda P; Murray, Lindsay E
Factors predicting the emotional well-being of adult siblings of those with developmental disability (DD) remain under-researched. In this study adult siblings of individuals with Down's syndrome (DS), autism (ASD), Prader-Willi syndrome (PWS) and those with DD but with unknown aetiology (DUA) were compared with each other and a closely-matched control group to ascertain if sibling disability type made a difference to anxiety and/or depression levels. Also considered was the interactive effect of gender, age, parental and sibling educational attainment levels, socio-economic status and birth order on anxiety and depression outcomes. With the exception of siblings of those with DS, adult siblings of those with ASD, PWS and DUA reported significantly higher levels of anxiety and depression than the control group. There were some predictive effects of the demographic variables upon anxiety and depression but none common to all disability types and no moderating effects of demographic factors were found. Consequently other solutions must be found as to why this important group of people have elevated rates of anxiety and depression in comparison to the general population. Copyright © 2016 Elsevier Ltd. All rights reserved.
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 infor...
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 ...
Herr, Stanley S.
The guide examines fundamental rights of mentally retarded and developmentally disabled persons. The monograph focuses on some of the central controversies of which consumers, professionals, planners, and advocates concerned with developmental disabilities should be aware. Problems of living and dying, resettlement and confinement, choice and…
Pears, Katherine C; Kim, Hyoun K; Fisher, Philip A; Yoerger, Karen
Two hundred and nine children receiving early childhood special education services for developmental disabilities or delays who also had behavioral, social, or attentional difficulties were included in a study of an intervention to increase school readiness, including early literacy skills. Results showed that the intervention had a significant positive effect on children's literacy skills from baseline to the end of summer before the start of kindergarten (d=.14). The intervention also had significant indirect effects on teacher ratings of children's literacy skills during the fall of their kindergarten year (β=.09). Additionally, when scores were compared to standard benchmarks, a greater percentage of the children who received the intervention moved from being at risk for reading difficulties to having low risk. Overall, this study demonstrates that a school readiness intervention delivered prior to the start of kindergarten may help increase children's early literacy skills. Copyright © 2016 Society for the Study of School Psychology. Published by Elsevier Ltd. All rights reserved.
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.
Normand, Claude L; Sallafranque-St-Louis, François
Studies demonstrate that youth are vulnerable to online sexual solicitation. However, no study has estimated this risk for youth diagnosed with an intellectual or developmental disability (IDD). A literature review of the risk factors associated with online sexual solicitation in youths was done using electronic databases, such as PsychInFO, ERIC, MEDLINE and Scopus. Fifty-seven published papers were found relevant. However, only two pertained to the population with IDD. Sexual and physical abuse, social isolation, loneliness, depression, and chatting were found to increase the risk of being prey to sexual solicitation on the Internet. Many of these risk factors are even more prevalent in youth with IDD than in the general population. Recommendations are made for future research to help understand and prevent sexual cybersolicitation. © 2015 John Wiley & Sons Ltd.
Levato, Lynne E; Aponte, Courtney A; Wilkins, Jonathan; Travis, Rebekah; Aiello, Rachel; Zanibbi, Katherine; Loring, Whitney A; Butter, Eric; Smith, Tristram; Mruzek, Daniel W
The purpose of this review is to describe and evaluate the existing research on the use of urine alarms in the daytime toilet training of children with intellectual and developmental disabilities (IDD). A systematic literature search yielded 12 studies, many of which were published over a decade ago. The findings suggest that interventions that incorporate the use of urine alarms are promising in the treatment of daytime enuresis for children with IDD; however, more carefully controlled research is needed to confirm these findings and elucidate the precise role urine alarms may play in toileting interventions. Methodological strengths and limitations of the body of research are discussed. Copyright © 2016 Elsevier Ltd. All rights reserved.
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.
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 for leisure activities such as listening to music and watching videos. Most research studies were small-n designs that provided a preponderant level of research evidence. There is a clear need for more research with younger participants and with a much wider range of apps, including educational apps.
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 disengagement and distraction strategies exacerbated the effects of burden on depression symptoms. Most effects were similar for mothers and fathers, and all coping strategies, including active strategies to reduce stress (primary engagement), had greater effects for the parents with co-resident children. Vulnerability to caregiver burden was greatest when the aging parents with co-resident children used disengagement and distraction coping, but those who used engagement coping were resilient. PMID:24679353
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
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…
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…
Magaña, Sandra; Parish, Susan L.; Son, Esther
The aim of this study was to determine if racial and ethnic disparities in the quality of provider interaction have changed between 2006 and 2010 for children with developmental disabilities and autism spectrum disorders (ASD). Data from the 2005/2006 and 2009/2010 National Survey of Children With Special Health Care Needs were analyzed. Results…
Dunst, Carl J.; Hamby, Deborah W.
This paper includes a nontechnical description of methods for calculating effect sizes in intellectual and developmental disability studies. Different hypothetical studies are used to illustrate how null hypothesis significance testing (NHST) and effect size findings can result in quite different outcomes and therefore conflicting results. Whereas…
Pesco, D.; MacLeod, A.A.N.; Kay-Raining Bird, E.; Cleave, P.; Trudeau, N.; Scherba de Valenzuela, J.; Cain, K.; Marinova-Todd, S.H.; Colozzo, P.; Stahl, H.; Segers, P.C.J.; Verhoeven, L.T.W.
This review of special education and language-in-education policies at six sites in four countries (Canada, United States, United Kingdom, and Netherlands) aimed to determine the opportunities for bilingualism provided at school for children with developmental disabilities (DD). While research has
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,…
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,…
Martin, Christian A.; Drasgow, Erik; Halle, James W.
We created and evaluated a professional development package for training four teachers to embed instructional interactions during outdoor time to enhance the play skills of young children with significant developmental disabilities. The instructional package included an initial 20-min session that consisted of providing written and verbal…
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…
Remis, Kimberly; Moore, Crystal Dea; Pichardo, Julia; Rosario, Zuliany; Moore, Jeffrey Palmer
This article describes the implementation and preliminary evaluation of a modified college experience for adults with intellectual and developmental disabilities (IDD) at a small liberal arts college. To increase social work students' interest in working with this population and access of people with IDD to higher education, Bridges to Skidmore…
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.…
McKenzie, Katherine; Ouellette-Kuntz, Hélène; Blinkhorn, Ashleigh; Démoré, Ashley
Background: The transition period out of the educational system can be a source of stress for parents of young adults with intellectual and developmental disabilities, as families lose the support and respite offered by schools. Materials and Methods: Using a before and after design nested within a 24-month follow-up study of parents seeking adult…
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…
Ward, Karen M.; Windsor, Richard; Atkinson, Julie P.
Adults with intellectual and developmental disabilities are frequently abused in dating and partnered relationships. The Friendships and Dating Program (FDP) was developed to prevent violence in dating and partnered relationships and to teach social skills needed to develop healthy, meaningful relationships among this population. A pilot study…
Hahn, Joan E.; Cadogan, Mary P.
Persons with intellectual and developmental disabilities (I/DD) face barriers and disparities at end of life. Among these barriers are limited educational opportunities and a paucity of targeted training materials on palliative care for staff who provide their day-to-day care. This paper reports on a three-phase project undertaken to develop,…
Blustein, Carly L.; Carter, Erik W.; McMillan, Elise D.
The expectations of parents can shape the post-school pathways of young people with intellectual and developmental disabilities (IDD). Yet little is known about how parents view the employment prospects and priorities of their sons and daughters after high school. We examined expectations, preferences, and concerns of 1,065 parents of children and…
Spassiani, Natasha A.; Parker Harris, Sarah; Hammel, Joy
Community-based health initiatives (CBHI) play an important role in maintaining the health, function and participation of people with intellectual/developmental disabilities (I/DD) living in the community. However, implementation and long-term sustainability of CBHI is challenging. The Promoting Action on Research Implementation in Health Services…
Benninger, Tara L.; Witwer, Andrea N.
Introduction: Parents and their children with Intellectual and Developmental Disabilities (IDD) are under significant amounts of stress (Lecavalier, Leone & Wiltz, 2006). When stress escalates to crisis, some children with IDD are admitted to the emergency department or an inpatient unit. While existing measures evaluate stress over time, we…
Leung, Cynthia; Lau, Joseph; Chan, Grace; Lau, Beverly; Chui, Mandy
The aim of this project was to develop and validate a Service Needs Questionnaire (SNQ) on the service needs of families with children with developmental disabilities. The SNQ and a measure of parenting stress were administered to 105 parents of children diagnosed with learning/behaviour problems and 233 parents of children attending primary…
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,…
Raab, Melinda; Dunst, Carl J.; Hamby, Deborah W.
Findings from a randomized controlled design study of an ability-based versus needs-based approach to response-contingent learning among children with significant developmental delays and disabilities who did not use instrumental behavior to produce reinforcing consequences are reported. The ability-based intervention and needs-based intervention…
Gray, Jennifer A.; Abendroth, Maryann
Background: The study explored the grief process of persons with intellectual and developmental disabilities (PWIDDs) as perceived by direct care workers (DCWs) and how such workers can guide and support PWIDDs experiencing grief. Materials and Methods: A thematic analysis approach was used to examine data from nine focus groups with 60 DCWs from…
Henriksen, Anne; Degenhardt, Sven
Individuals with cognitive and developmental disabilities have a high probability of visual impairment. This study revealed the effects of deficits in the appropriate diagnosis of vision and medical treatment, as well as the lack of necessary refraction correction and support, specifically for adults with intellectual and developmental…
Smits-Engelsman, B.C.M.; Wilson, P.H.; Westenberg, Y.; Duysens, J.E.J.
Thirty-two children with Developmental Coordination Disorder (DCD) and learning disabilities (LD) and their age-matched controls attending normal primary schools were investigated using kinematic movement analysis of fine-motor performance. Three hypotheses about the nature of the motor deficits
Smits-Engelsman, B.C.M.; Wilson, P.H.; Westenberg, Y.; Duysens, J.E.J.
Thirty-two children with Developmental Coordination Disorder (DCD) and learning disabilities (LD) and their age-matched controls attending normal primary schools were investigated using kinematic movement analysis of fine-motor performance. Three hypotheses about the nature of the motor deficits
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…
Medicaid Home and Community-Based Services (HCBS) 1915(c) waivers are one of the largest providers of long-term services and supports for people with intellectual and developmental disabilities (IDD). HCBS waivers also play a prominent role in providing day habilitation services for people with IDD. The purpose of this study was to examine how…
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…
Cullen, Jennifer M.; Simmons-Reed, Evette A.; Weaver, Lindy
Barriers in acquiring, maintaining, and generalizing daily living skills are factors that contribute to discrepancies in independent living outcomes among transition age youth and young adults with intellectual and developmental disabilities (IDD). Acquisition and generalization of daily living skills empowers transition age youth and young adults…
Wright, Michelle F.
The aim of this study was to examine the mitigating effect of perceived social support from parents, teachers, and friends on the association between cyber victimization and depression, accessed one year later. Adolescents (n = 131; 13-15 years old; 73% male) with intellectual and developmental disabilities completed questionnaires on their…
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…
Ahlgrim-Delzell, Lynn; Browder, Diane M.; Wood, Leah; Stanger, Carol; Preston, Angela I.; Kemp-Inman, Amy
A phonics-based reading curriculum in which students used an iPad to respond was created for students with developmental disabilities not able to verbally participate in traditional phonics instruction due to their use of augmentative and assistive communication. Time delay and a system of least prompts used in conjunction with text-to-speech…
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…
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…
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…
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…
Maurice-Stam, H.; Verhoof, E. J.; Caron, H. N.; Grootenhuis, M. A.
The aim of this study was to investigate whether an unfavourable psychosocial developmental trajectory while growing up with childhood cancer is related to a smaller likelihood of labour participation in adult life. A total of 53 childhood cancer survivors (CCS) with and 313 CCS without disability
Magaña, S; Li, H; Miranda, E; Paradiso de Sayu, R
Latina mothers who care for children with intellectual and developmental disabilities (IDD) over the lifespan struggle to take care of their own health needs in the context of their caregiving experience. Services are typically aimed at the persons with IDD and not their family caregivers. Yet, attending to family caregiver needs may contribute to better long-term care of persons with IDD who remain at home. To address this unmet need, we developed a culturally sensitive health education intervention for Latina mothers who care for youth and adults with IDD. The aim of the intervention is to improve maternal health-related self-efficacy and health behaviours, and to reduce stress. A randomised control design was employed to determine preliminary efficacy of the intervention. Paired sample t-tests were conducted to examine within-group changes from baseline to 3-month post-test. Repeated-measures analysis of covariance was used to examine the group-by-time interaction effects. Intervention participants showed greater increases between pre- and post-test in health-related self-efficacy; self-care, nutrition and overall health behaviours. Both groups reported decreases in depressive symptoms and caregiver burden. While additional research is needed to determine long-term effects and to replicate findings, our results suggest that this culturally sensitive health intervention is a promising way to increase health behaviours which may lead to overall good health for Latina mothers who care for children with IDD across the lifespan. © 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.
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.
Bazzano, Alicia T; Zeldin, Ari S; Diab, Ida R Shihady; Garro, Nicole M; Allevato, Nathalia A; Lehrer, Danise
Although adults with developmental disabilities are at high risk for obesity and its sequelae, few community-based lifestyle interventions targeting those with developmental disabilities exist. The study was a single group, community-based demonstration project with pre-post test evaluation conducted from December 2005 to June 2006. Eligible participants were 431 community-dwelling adults with developmental disabilities, aged 18-65 years, who were overweight/obese (BMI > or =25) with another risk factor for diabetes or metabolic syndrome or who had a diagnosis of diabetes, and received services from a community agency. Eighty-five signed up (20% of those eligible), 68 participated in an initial class, and 44 completed the program (35% attrition rate). The Healthy Lifestyle Change Program (HLCP) is a community-based health intervention developed and implemented using community-based participatory research methods by members of the developmental disabilities community, in collaboration with academic researchers. The HLCP was a 7-month, twice-weekly education and exercise program to increase knowledge, skills, and self-efficacy regarding health, nutrition, and fitness among adults with developmental disabilities. Peer mentors served as participant leaders and primary motivators. Changes in weight, BMI, abdominal girth, access to care, and self-reported nutrition, physical activity, and life satisfaction were each measured. Two thirds of participants maintained or lost weight, with a mean weight loss of 2.6 pounds and a median weight loss of 7 lbs (range: 2-24 lbs). Average BMI decreased by 0.5 kg/m(2) (p=0.04). Abdominal girth decreased in 74% of participants (mean= -1.9 inches). Sixty-one percent of participants reported increased physical activity. Mean exercise frequency increased from 3.2 times to 3.9 times per week (p=0.01). Mean exercise duration increased from 133 minutes to 206.4 minutes per week (p=0.02). Significant improvements in nutritional habits and
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.
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.
Marta BADÍA CORBELLA
Full Text Available Currently, the intervention models for individuals with Developmental Disabilities (DD focus on Quality of Life outcomes (QOL. The goal of this study was to analyze the QOL of adults and to determine the influence of personal and dis-ability factors in QOL. A sample of 119 adults with DD (91 male and 28 female; age: M = 45.68; SD = 12.57 participated in the study. The QOL was assessed by the Escala INICO-FEAPS. T contrast were conducted to compare outcomes in adults with DD with the norm, and ANOVAs to examine the differences between the dimensions of QOL and the incidence of the studied factors. Outcomes show that adult people with DD informed low levels of QOL, specifically in Interpersonal Relationship, Social In-clusion, and Self-determination. The most factor that influence on QOL perception was the level of dependence. In conclusion, the results show that professionals assess better the QOL than the own individuals with DD.
Moeschler, John B; Shevell, Michael
Global developmental delay and intellectual disability are relatively common pediatric conditions. This report describes the recommended clinical genetics diagnostic approach. The report is based on a review of published reports, most consisting of medium to large case series of diagnostic tests used, and the proportion of those that led to a diagnosis in such patients. Chromosome microarray is designated as a first-line test and replaces the standard karyotype and fluorescent in situ hybridization subtelomere tests for the child with intellectual disability of unknown etiology. Fragile X testing remains an important first-line test. The importance of considering testing for inborn errors of metabolism in this population is supported by a recent systematic review of the literature and several case series recently published. The role of brain MRI remains important in certain patients. There is also a discussion of the emerging literature on the use of whole-exome sequencing as a diagnostic test in this population. Finally, the importance of intentional comanagement among families, the medical home, and the clinical genetics specialty clinic is discussed. Copyright © 2014 by the American Academy of Pediatrics.
Aman, Michael G; Smith, Tristram; Arnold, L Eugene; Corbett-Dick, Patricia; Tumuluru, Rameshwari; Hollway, Jill A; Hyman, Susan L; Mendoza-Burcham, 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. 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 the emergence of irritability with ATX treatment. Effects of ATX on cognition in DD are virtually unstudied. Copyright © 2014 Elsevier Ltd. All rights reserved.
Lindly, Olivia J; Chavez, Alison E; Zuckerman, Katharine E
To determine associations of unmet needs for child or family health services with (1) adverse family financial and employment impacts and (2) child behavioral functioning problems among US children with autism spectrum disorder (ASD), developmental delay (DD), and/or intellectual disability (ID). This was a secondary analysis of parent-reported data from the 2009 to 2010 National Survey of Children with Special Health Care Needs linked to the 2011 Survey of Pathways to Diagnosis and Services. The study sample (n = 3,518) represented an estimated 1,803,112 US children aged 6 to 17 years with current ASD, DD, and/or ID (developmental disabilities). Dependent variables included adverse family financial and employment impacts, as well as child behavioral functioning problems. The independent variables of interest were unmet need for (1) child health services and (2) family health services. Multivariable logistic regression models were fit to examine associations. Unmet need for child and family health services, adverse family financial and employment impacts, and child behavioral functioning problems were prevalent among US children with developmental disabilities. Unmet needs were associated with an increased likelihood of adverse family employment and financial impacts. Unmet needs were associated with an increased likelihood of child behavioral functioning problems the following year; however, this association was not statistically significant. Unmet needs are associated with adverse impacts for children with developmental disabilities and their families. Increased access to and coordination of needed health services following ASD, DD, and/or ID diagnosis may improve outcomes for children with developmental disabilities and their families.
Roslyn Holly Fitch
Full Text Available Most researchers in the field of neural plasticity are familiar with the Kennard Principle," which purports a positive relationship between age at brain injury and severity of subsequent deficits (plateauing in adulthood. As an example, a child with left hemispherectomy can recover seemingly normal language, while an adult with focal injury to sub-regions of left temporal and/or frontal cortex can suffer dramatic and permanent language loss. Here we present data regarding the impact of early brain injury in rat models as a function of type and timing, measuring long-term behavioral outcomes via auditory discrimination tasks varying in temporal demand. These tasks were created to model (in rodents aspects of human sensory processing that may correlate – both developmentally and functionally – with typical and atypical language. We found that bilateral focal lesions to the cortical plate in rats during active neuronal migration led to worse auditory outcomes than comparable lesions induced after cortical migration was complete. Conversely, unilateral hypoxic-ischemic injuries (similar to those seen in premature infants and term infants with birth complications led to permanent auditory processing deficits when induced at a neurodevelopmental point comparable to human "term," but only transient deficits (undetectable in adulthood when induced in a "preterm" window. Convergent evidence suggests that regardless of when or how disruption of early neural development occurs, the consequences may be particularly deleterious to rapid auditory processing outcomes when they trigger developmental alterations that extend into subcortical structures (i.e., lower sensory processing stations. Collective findings hold implications for the study of behavioral outcomes following early brain injury as well as genetic/environmental disruption, and are relevant to our understanding of the neurologic risk factors underlying developmental language disability in
Fitch, R Holy; Alexander, Michelle L; Threlkeld, Steven W
Most researchers in the field of neural plasticity are familiar with the "Kennard Principle," which purports a positive relationship between age at brain injury and severity of subsequent deficits (plateauing in adulthood). As an example, a child with left hemispherectomy can recover seemingly normal language, while an adult with focal injury to sub-regions of left temporal and/or frontal cortex can suffer dramatic and permanent language loss. Here we present data regarding the impact of early brain injury in rat models as a function of type and timing, measuring long-term behavioral outcomes via auditory discrimination tasks varying in temporal demand. These tasks were created to model (in rodents) aspects of human sensory processing that may correlate-both developmentally and functionally-with typical and atypical language. We found that bilateral focal lesions to the cortical plate in rats during active neuronal migration led to worse auditory outcomes than comparable lesions induced after cortical migration was complete. Conversely, unilateral hypoxic-ischemic (HI) injuries (similar to those seen in premature infants and term infants with birth complications) led to permanent auditory processing deficits when induced at a neurodevelopmental point comparable to human "term," but only transient deficits (undetectable in adulthood) when induced in a "preterm" window. Convergent evidence suggests that regardless of when or how disruption of early neural development occurs, the consequences may be particularly deleterious to rapid auditory processing (RAP) outcomes when they trigger developmental alterations that extend into subcortical structures (i.e., lower sensory processing stations). Collective findings hold implications for the study of behavioral outcomes following early brain injury as well as genetic/environmental disruption, and are relevant to our understanding of the neurologic risk factors underlying developmental language disability in human
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
Makel, Matthew C; Kell, Harrison J; Lubinski, David; Putallaz, Martha; Benbow, Camilla P
The educational, occupational, and creative accomplishments of the profoundly gifted participants (IQs ⩾ 160) in the Study of Mathematically Precocious Youth (SMPY) are astounding, but are they representative of equally able 12-year-olds? Duke University's Talent Identification Program (TIP) identified 259 young adolescents who were equally gifted. By age 40, their life accomplishments also were extraordinary: Thirty-seven percent had earned doctorates, 7.5% had achieved academic tenure (4.3% at research-intensive universities), and 9% held patents; many were high-level leaders in major organizations. As was the case for the SMPY sample before them, differential ability strengths predicted their contrasting and eventual developmental trajectories-even though essentially all participants possessed both mathematical and verbal reasoning abilities far superior to those of typical Ph.D. recipients. Individuals, even profoundly gifted ones, primarily do what they are best at. Differences in ability patterns, like differences in interests, guide development along different paths, but ability level, coupled with commitment, determines whether and the extent to which noteworthy accomplishments are reached if opportunity presents itself. © The Author(s) 2016.
Benjamin, Tanya E; Lucas-Thompson, Rachel G; Little, Lauren M; Davies, Patricia L; Khetani, Mary A
This mixed methods study examined: 1) how young children with and without developmental disabilities and delays participate in daycare or preschool activities; 2) similarities and differences in environmental factors impacting daycare or preschool participation; and 3) strategies used by parents who desired a change in their child's participation. Data were drawn from 129 parents of young children with and without developmental disabilities and delays (mean age = 49.3 months) residing in North America. Summary and item-level group differences based on disability status were assessed for participation and environmental supports to participation. Narrative data on parental strategies were content coded, transformed into numerical counts, and summarized to identify strategies commonly employed by parents to promote their child's participation. Moderate to large disability related group differences in participation and environmental support to participation were found even after controlling for confounding effects of child age, child gender, and family income. Parents commonly described strategies focused on "child care tasks" and "child peer groups," irrespective of the type(s) of change they desired. Study findings suggest that discrepancies in school participation between young children with and without disabilities and delays can be detected and intervened on during the early childhood period.
Büchele, G; Becker, C; Cameron, I D; Auer, R; Rothenbacher, D; König, H H; Rapp, K
Age- and sex-specific fracture rates of 18,000 people with developmental disabilities aged 0-69 years were compared to the general population. Age-standardized incidence of femoral fracture was 4.8- and 7.1-fold higher in women and men, respectively. Comparable fracture risks to the general population occurred 10-15 years earlier in females and 20-40 years earlier in males. Previous studies suggested that fracture risks in people with developmental disabilities (DD) may be higher than in people in the general population. However, there are no current sufficiently large studies to compare age- and sex-specific fracture rates of single fracture types. People with DD and incident fractures were identified by routine data of a health insurance company. Fractures in the general population were derived from the official fracture statistics. Age-specific and age-standardized fracture incidences were analyzed. To compare fracture risks in people with DD with that of the general population incidence ratios were calculated. Between 2008 and 2010, 148 femoral fractures and 469 other fractures were observed in nearly 18,000 people with DD aged 0-69 years. The three most frequent fracture types leading to hospital admission were fractures of the femur, lower leg/ankle, and shoulder/arm. For femoral fractures, a particularly high risk was observed in children and adolescents with DD. In adults with DD, the risk of femoral fractures increased with increasing age. Even if the youngest age category was not considered, the age-standardized incidence was 4.8- and 7.1-fold higher in women and men, respectively. For all other fracture types, except fractures of forearm/hand and of pelvis, people with DD had also higher fracture incidences than the general population. People with DD have a high fracture burden. Comparable risks of femoral fracture, for example, occurred about 10-15 years earlier in females and even 20-40 years earlier in males with DD than in the general
Ananthanarayan, C; Sigal, M; Godlewski, W
The management of the behavior of mentally challenged adults when providing required dental care is often a problem, whether in the dental office or in a hospital setting. Our institution has a designated program to provide required dental care to this group of patients. Because of the high incidence of poor cooperation, which may include aggressive antagonistic behavior, many of these patients are scheduled for dental care under general anesthesia with an incomplete preoperative medical assessment. The purpose of this study was to determine the impact and limitations that an incomplete medical assessment may present in the delivery of dental care under general anesthesia to these adults with developmental disability. After approval from the institutional review board, the medical records of 139 patients treated in this program between 1992 and 1994 were reviewed to determine the patient profiles, anesthesia management, and complications. The charts of these patients, who underwent dental and radiographic examination, scaling and prophylaxis, and restoration and extraction of teeth under general anesthesia, were reviewed. There were 149 procedures performed on these patients, some more than once. The mean age was 29.5 yr. Males predominated females by a ratio of 2:1. All had multiple diagnoses, medical problems, and medications. Twenty-three patients had Down's Syndrome, four had schizophrenia disorders, 42 had seizure disorders, 11 had hypothyroidism, seven had heart disease, and 14 had central nervous system and neuromuscular disorders. The remainder had a variety of diagnoses, including rare syndromes. One hundred had intravenous (i.v.), 25 had mask inhalation, and 24 had intramuscular ketamine (Ketalar) induction. Nasotracheal intubation was uneventful in 139 patients, five had difficult visualization of the larynx and intubation. Ten patients experienced intraoperative complications, including nonfatal ventricular arrhythmia, slight fall in blood pressure and
Thirion-Marissiaux, Anne-Françoise; Nader-Grosbois, Nathalie
Patterns of development of ToM belief abilities in intellectually disabled (ID) children and typically developing (TD) children matched on their developmental age were investigated. The links between cognition, language, social understanding and ToM belief abilities were examined. EDEI-R [Perron-Borelli M. (1996). Echelles Différentielles d'Efficiences Intellectuelles. Forme Révisée (EDEI-R). Paris: Editions et Applications Psychologiques.] was used to match participants and to assess social understanding. ECOSSE [Lecocq P. (1996). L'E.CO.S.SE. Une épreuve de compréhension syntaxico-sémantique. Paris: Presses Universitaires du Septentrion.] assessed the level of syntactic and semantic comprehension of French speaking, to ensure a good comprehension of the questions in false belief tasks. Five tasks assessed the ability in visual perspective taking and in understanding of false belief. A difference in the global ToM ability was found between both groups (difference hypothesis in ID participants). Specific abilities in different ToM tasks showed developmental patterns partially different and partially similar, between ID and TD groups. The interest to assess the understanding of belief by means of several tasks is confirmed. Positive links between cognition, language and ToM abilities were found in both groups, but the impact of cognition and language on abilities in each ToM task is different in both groups. Finally, the specific impact of social understanding and of chronological age on abilities in false belief in ID group is discussed.
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.
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.
Skotarczak, Laura; Lee, Gloria K
This meta-analysis determined the effects of parent management training (PMT) on disruptive behaviors in children with a developmental disability. Parent management training programs, based on behavioral theories of psychology, are commonly used in addressing disruptive behavior in children. Eleven studies met inclusion criteria with a total of 540 participants, with 275 in experimental groups and 265 in control groups. The effect of PMT on the disruptive behavior in children with a developmental disability was significant (g=0.39). The moderator effects of type of PMT, delivery type and setting, and administrator level of education were also significant. The moderator effects of child age, and session number and duration were not significant in this meta-analysis. Copyright © 2014 Elsevier Ltd. All rights reserved.
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.
Moore, Tara C; Robinson, Christina C; Coleman, Mari Beth; Cihak, David F; Park, Yujeong
The purpose of this study was to examine the effects of a noncontingent reinforcement intervention package implemented by an interning teacher in a special education classroom to address disruptive behavior and task engagement for a third-grade, 8-year-old boy with developmental disability. Using a within-subject reversal design (A-B-A-B), a teacher interning in Max's classroom delivered 3-min breaks (i.e., escape) from classroom tasks on a fixed-time 2-min interval schedule for five daily sessions during the first intervention phase and for five daily sessions during the reimplementation phase; breaks were not contingent on his behavior. The intervention package also included a reinforcement menu for the student to select daily from escape activities (i.e., preferred activities including swinging and taking a walk) and a picture prompt to provide a continuous, visual reminder of the upcoming reinforcer. Results indicated increases in task engagement and decreases in disruptive behavior during phases when the intervention was applied. Implications for future research and practice are discussed. © The Author(s) 2016.
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.
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
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.
Ptomey, Lauren T; Gibson, Cheryl A; Willis, Erik A; Taylor, Jacob M; Goetz, Jeannine R; Sullivan, Debra K; Donnelly, Joseph E
Adolescents with intellectual and developmental disabilities (IDD) have high rates of obesity. However, little research has been conducted demonstrating effective strategies and barriers for weight loss or weight management in adolescents with IDD. Furthermore, parents play a large role in terms of weight management in children and adolescents with IDD, and their views should be taken into consideration when designing a diet and PA intervention for weight management. The aims of this study are to better understand the parents' perspectives on the strategies and barriers for helping children and adolescents with IDD be successful in a weight management program and to identify how this information to guide future approaches. Semi-structured interviews were conducted in 18 parents whose children had just finished a diet and PA intervention. Interviews were transcribed verbatim, and thematic analysis was performed. Parents reported a positive attitude toward the program, liked the convenience of the program, and felt that they learned beneficial strategies to encourage healthy habits in the home. Parents found time to be a major barrier to supporting their child with a diet and PA intervention. Parents were willing to change their own dietary behaviors to help their children successfully follow a weight loss intervention; however, no parent reported changing their own PA levels. Future diet and PA studies should aim to reduce parental time commitment and increase importance of PA. Copyright © 2016 Elsevier Inc. All rights reserved.
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.
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.
Minihan, Paula M; Morgan, John P; Park, Angel; Yantsides, Konstantina E; Nobles, Carrie J; Finkelman, Matthew D; Stark, Paul C; Must, Aviva
Little is known about effective at-home oral care methods for people with developmental disabilities (DDs) who are unable to perform personal preventive practices themselves and rely on caregivers for assistance. A convenience sample of 808 caregivers (84.5 percent paid, 15.5 percent family members) who accompanied adults with DDs (20 years or older) to appointments at a specialized statewide dental care system completed computer-assisted personal interview surveys. The authors used these data to investigate caregivers' at-home oral care experiences and to explore differences between caregivers who were paid and those who were family members. Caregivers reported that a high proportion (85 percent) of dentate adults with DDs received assistance with tooth cleaning. They also reported a high prevalence of dental problems, and low adherence to brushing (79 percent) and flossing (22 percent) recommendations. More caregivers reported that they felt confident assisting with brushing than with flossing (85 percent versus 54 percent). Family members and paid caregivers differed with respect to confidence and training. At-home oral care, particularly flossing, presents substantial challenges for adults with DDs. Solutions must be tailored to address the different experiences and distinct needs of the family members and paid caregivers who assist these adults. Caregivers play an important role in providing at-home oral care, and they must be included in efforts to improve oral health outcomes for people with DDs.
Carmeli, Eli; Imam, Bita
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. PMID:24783190
Maria Clara de Freitas
Full Text Available As a part of a larger project, this research aimed to describe and analyze the situation of children with special needs in Early Education Centers, most specifically the interaction among children. As procedure videotaped free-play activities were categorized to describe the interactive behavior of children in relation to each other (in pairs on: frequency, direction, duration, topography, and the status of the child, which could be considered isolated, grouped and in teracting, only grouped or alone. These data were analyzed in interactive dyads in order to compare the quality of interaction when the disabled child was present or not. The results indicated that the situation examined had strongly positive aspects, such as the high frequency of interaction, even if to the adults. However, she did spent great time alone, and their interactions with peers were smaller and of different quality (basically less verbal compared to the interaction among the other children. Thus, based on the belief that social inclusion would be achieved only when typically developed children kept the same quality of relationships with children with and without developmental delays, the general conclusion indicated little success in the analyzed situation. Possibilities of intervention to promote interaction between children are discussed.
Koehler, Alana D; Fagnano, Maria; Montes, Guillermo; Halterman, Jill S
To evaluate how having a child with both persistent asthma and a developmental disability (DD) affects caregiver burden and quality of life (QOL). 3-10 year old children with persistent asthma in urban Rochester, NY. Cross-sectional baseline survey (2006-2009). Parent report of autism spectrum disorder or other behavioral disorder requiring medication. Caregiver burden and QOL as measured by scores on previously validated depression, parenting confidence, and asthma-related QOL scales as well as an assessment of competing demands on the caregiver. Bivariate and multivariate regression analyses controlling for caregiver age, education, marital status, race, ethnicity, and child asthma symptom severity. We enrolled 530 children as part of a larger study (response rate: 74; 63 % Black, 73 % Medicaid). Of this sample, 70 children (13 %) were defined as having a DD. There were no differences in asthma symptom severity between children with and without a DD diagnosis. However, even after adjusting for potential confounders, caregivers of children with a DD reported worse scores on the depression (p = .003), parenting confidence (p caregivers of typically developing children with asthma. Despite having similar asthma symptom severity, caregivers of children with both persistent asthma and a DD diagnosis report more burden and lower QOL compared to that of caregivers of typically developing children and persistent asthma. Further attention to this subgroup is needed to promote optimal support for caregivers.
Szkup-Jabłońska, Małgorzata; Karakiewicz, Beata; Grochans, Elzbieta; Jurczak, Anna; Zaremba-Pechmann, Liliana; Rotter, Iwona; Nowak-Starz, Grazyna; Samochowiec, Jerzy
The aim of the study was to assess the relationship between lead levels in children's blood and the development of social disorders. Lead levels were measured in every child's blood test and following on from that the influence of this toxin on children's behaviour was assessed. Manfred Cierpka questionnaire was used as the assessment tool examining children's family relationships and Children's Health Questionnaire Parent Form-28 was used to assess the subjects' health profile. The statistical analysis revealed a statistically significant relationship between lead concentration in the child's blood and whether or not the child was able to meet social expectations (p = 0.018), form affective relationships (p = 0.046), its nervousness (p = 0.024) and a generally lower assessment of his/her behavior in comparison with the peer group (p = 0.024). Neurotoxic influence of lead on the developing child's organism results in developmental disabilities in its behaviour. These dysfunctions can lead to disorders in the child's social development and they can hinder its functioning. An increased concentration of metal toxins in the child's blood can be responsible for difficulties in meeting social expectation, which in turn is connected with increased nervousness and disorders in forming relationships. Children facing these problems often receive negative marks for their behaviour in comparison with the peer group. Such difficulties can lead to the child's social exclusion and predispose it to making antisocial or criminal decisions in the future.
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.
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.
Murray, B Lee
This case report is the story of my son's alleged abuse, told from my perspective. At the time, Jordan, a boy with Down syndrome, was 14 years old when his disclosure of sexual abuse by a school employee occurred. As part of the healing process, I use autoethnography to tell the story. I also describe and discuss a school-based program, which I developed and deliver, to provide sexual health promotion and sexual abuse prevention to adolescents with developmental disabilities.
Giltaij, H.P.; Sterkenburg, P.S.; Schuengel, C.
Background: Children with intellectual disability (ID) are at risk for maladaptive development of social relatedness. Controversy exists whether Pervasive Developmental Disorder (PDD) takes precedence over disordered attachment for describing maladaptive social behaviour. The aim of this study was
Watson, Linda R.; Patten, Elena; Baranek, Grace T.; Poe, Michele; Boyd, Brian A.; Freuler, Ashley; Lorenzi, Jill
Purpose 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. Method Children with autistic disorder (AD; n = 72, mean age = 52.3 months) and other developmental disabilities (DD; 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. Results 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 two 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 two groups. Conclusions Aberrant sensory processing may play an important role in the pathogenesis of autism and other developmental disabilities, as well as in the rate of acquisition of language, social, and communication skills. PMID:21862675
Nambisan, Priya; Lamkin, Donna; DeLong, Carrie
Telemonitoring is being increasingly used to provide services to patients with developmental disabilities in residential community settings. The objective of this study is to assess the feasibility, benefits and challenges of using telemonitoring for aging patients with developmental disabilities. We also assess the benefits and challenges of telemonitoring for the caregivers of these patients. Focus groups and questionnaire-based surveys were used to collect data from patients and caregivers. The study found that telemonitoring was feasible and beneficial for the aging with developmental disabilities, albeit for those who are moderate to high functioning. It was not beneficial or feasible for those with very low functional capabilities. The study found that telemonitoring was beneficial towards providing more independence, more self-confidence in carrying out daily activities, and more knowledge regarding their disease. The study also found that telemonitoring was useful for caregivers to better understand their patients and their needs, better coordinate the services delivered, and to enhance the satisfaction of caregiving. The discussions include limitations of using quantitative methods in this type of setting.
Dammeyer, Jesper; Køppe, 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 utilizes optical markers to capture body movements. The aim of this study was to explore the practicality of measuring body movements in the nonverbal communication of a child with severe developmental disabilities. A preliminary case study has been undertaken. The social interaction between a boy with developmental disabilities and his teacher was analyzed (1) using observer ratings on psychological aspects of the social interaction and (2) measuring body positions, velocity, and angles of body movements using the QMCS. Associations between observer ratings and measured body movements were examined. This preliminary case study has indicated that emotional response and attention level during the social interaction corresponded with local, synchronized movements and face-to-face orientation. Measurement of motor behavior is suggested as being a potentially useful methodological approach to studying social interaction and communication development.
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
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.
Thirion-Marissiaux, Anne-Françoise; Nader-Grosbois, Nathalie
Patterns of development of ToM-emotion abilities in intellectually disabled (ID) children and typically developing (TD) children matched on their developmental age were investigated. The links between cognition, language, social understanding and ToM-emotion abilities were examined. EDEI-R (Perron-Borelli, M. (1996). Echelles Différentielles d'Efficiences Intellectuelles. Forme Révisée (EDEI-R). Paris: Editions et Applications Psychologiques) was used to match participants and to assess social understanding. ECOSSE (Lecocq, P. (1996). L'E.CO.S.SE. Une épreuve de compréhension syntaxico-sémantique. Paris: Presses Universitaires du Septentrion) assessed the level of syntactic and semantic comprehension of French speaking, to ensure a good comprehension of the questions in ToM-emotion tasks. Adapted tasks of the understanding of causes and consequences of emotions (Quintal, G. (2001). La compréhension des émotions chez les enfants d'âge préscolaire dans le cadre d'une théorie de l'esprit. Un-published master's thesis, University of Montreal, Québec) assessed ToM-emotion abilities (Nader-Grosbois, N., Thirion-Marissiaux, A.-F., & Grosbois, M. (2003). Adapted tests for assessment of the Theory of Mind of causes and consequences of emotions (unpublished documents). Louvain-la-Neuve, Belgium). Similarities in the development of ToM-emotion abilities and social understanding were found, respectively, in both groups (delay hypothesis in ID participants). Some differences between groups were observed in the links between social understanding and ToM-emotion abilities. Significant correlations between developmental characteristics (verbal and non-verbal cognition) and ToM-emotion abilities were obtained for both groups. Verbal cognition explained an important part of the variance of ToM results (understanding of causes and consequences of emotions). The impact of chronological age on ToM-emotion abilities was also examined and is discussed.
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.
Job Burnout amongst the Institutional Caregivers Working with Individuals with Intellectual and Developmental Disabilities: Utilization of the Chinese Version of the Copenhagen Burnout Inventory Survey
Lin, Lan-Ping; Lin, Jin-Ding
Burnout has been considered important to understand the well-being of people who work with individuals with intellectual disabilities (ID) and developmental disabilities (DD). To identify personal and workplace characteristics associated with burnout, this study aimed to utilize the Chinese version of the Copenhagen Burnout Inventory to provide a…
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.
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.
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
Nachshen, J S; Minnes, P
Despite the widespread use of the term 'empowerment' in clinical literature to describe both a desirable process and the outcome of service delivery, the term remains more of a theoretical than practical construct. This study examined the factors that contribute to empowerment in parents of school-aged children with and without developmental disabilities (DD) using the Double ABCX model of family adaptation contrasted with the linear ACBX model. Parents of children with (n = 100, 97% mothers) and without (n = 100, 98% mothers) DD completed questionnaires relating to child behaviour problems, parent stress and well-being, and formal and informal support. Structural equation modelling was used Parents of children with DD reported more child behaviour problems, more stress, less well-being and more social support than parents of children without DD. Structural equation modelling supported the ACBX model for both groups. A linear relationship was found in which parent well-being and resources mediated the relationship between the stressor (child behaviour problems) and the outcome (empowerment). The results of the current study support Hastings and Taunt's assertion in 2002, in that empowerment was adequately explained using a traditional model of family functioning. The significant prediction offered by the parent's resources points to the need to deliver services in a manner that is more family-centred. In the education system, this means providing parents with clear messages regarding the schools goals, clarifying the parent's rights and responsibilities, including the parent in planning and decision making, respecting their knowledge as caregivers and supporting their hopes for their child.
Lunsky, Yona; Durbin, Anna; Brown, Hilary K; Bansal, Symron; Heifetz, Marina; Antoniou, Tony
Owing to the commonly held notion that individuals with intellectual and developmental disabilities (IDD) have low risk of HIV acquisition, we compared the prevalence of HIV infection among people with and without IDD. We also examined health status and health service use among the HIV-infected group. Population-based cohort study using linked administrative health and social services databases. We compared HIV prevalence between Ontario adults with IDD (n = 64 008) and a 20% random sample of Ontario adults without IDD. Among the HIV-infected group, we compared adults with and without IDD in terms of comorbid chronic physical conditions and mental health disorders, as well as use of overall health services, mental health services, and HIV-specific services. HIV prevalence per 100 000 population did not differ for adults with IDD [163.38 (95% confidence interval: 132.27, 199.6)] and without IDD [172.45 (95 confidence interval: 167.48, 177.53)]. Among the HIV-infected group, those with IDD had more comorbid chronic physical conditions and mental health disorders. They also had greater use of overall health services and mental health services. Likelihood of use of HIV-specific services also differed for those with and without IDD. A similar prevalence of HIV among adults with and without IDD accentuates a need for strategies for individuals with IDD to be included in HIV prevention efforts. High prevalence of chronic physical and mental health comorbidity and health service use among the HIV-infected group with IDD highlight a need for comprehensive and coordinated treatment plans to optimize outcomes for this complex patient group.
Spassiani, Natasha A; Sawyer, Amanda R; Chacra, Megan S Abou; Koch, Kimberley; Muñoz, Yasmin A; Lunsky, Yona
Individuals with intellectual and developmental disabilities (IDD) have complex healthcare needs, which are often unmet. Nominal group technique (NGT) uses a mixed-methods approach, which may engage the IDD population in the research process in a person-centered manner and address the shortcomings of traditional research methods with this population. NGT was used with a group of 10 self-advocates to evaluate a series of healthcare tools created by and for individuals with IDD. Participants provided helpful input about the strengths of these tools and suggestions to improve them. NGT was found to be an effective way to engage all participants in the research process.
Noelle Denny-Brown; Leah Guanga; Daniella Sehgal
Integrated employment is defined as participation in competitive employment in which people with disabilities work alongside people without disabilities for at least minimum wage. This issue brief describes five states' efforts to increase integrated employment for people with intellectual or developmental disabilities. It discusses barriers that have hindered states' progress toward expanding integrated employment outcomes and highlights lessons that can help other states advance their effor...
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.
Bandino, Michelle L; Garfinkle, Rebecca A; Zickefoose, Betty A; Hsieh, David T
The comprehensive care of children with epilepsy involves not only the treatment of seizures but also enhancement of their quality of life. Children with developmental disabilities are often unable to attend traditional summer camps because of safety concerns, as their prevalence of epilepsy is high and tends to be more severe. The goal of the current study is to describe our epilepsy experience at a summer camp adapted for children with developmental disabilities, with which the U. S. military has had a long-standing relationship. A retrospective chart review of all children and young adults attending summer sessions between 2008 and 2010 was performed. A total of 1,526 camp sessions were attended by 818 campers (mean 13.7 years), with 32.3% of campers having epilepsy. Of campers with epilepsy, 46.6% had cerebral palsy, 57.6% intellectual disability, and 28.8% autism spectrum disorders. Seizure frequency was at least weekly in 21.2% and at least daily in 13.3%. A history of status epilepticus was reported in 34.9%. There were seven camp infirmary visits because of seizures (incidence 1.4%), including two for status epilepticus. Thus, despite a high prevalence of severe epilepsy, in the setting of appropriate safety precautions, a safe camp experience can be provided, as seizure-related complications are rare. Reprint & Copyright © 2014 Association of Military Surgeons of the U.S.
Uwineza, Annette; Hitayezu, Janvier; Jamar, Mauricette; Caberg, Jean-Hubert; Murorunkwere, Seraphine; Janvier, Ndinkabandi; Bours, Vincent
Global developmental delay (GDD) is defined as a significant delay in two or more developmental domains: gross or fine motor, speech/language, cognitive, social/personal and activities of daily living. Many of these children will go on to be diagnosed with intellectual disability (ID), which is most commonly defined as having an IQ Patau syndrome. Other identified chromosomal abnormalities included 47,XX,+del(9)(q11), 46,XY,del(13)(q34) and 46,XX,der(22)t(10;22)(p10;p10)mat. In conclusion, our results highlight the high frequency of cytogenetically detectable abnormalities in this series, with implications for the burden on the healthcare. This study demonstrates the importance of cytogenetic analysis in patients with GDD/ID and MCA. PMID:26507407
Uwineza, Annette; Hitayezu, Janvier; Jamar, Mauricette; Caberg, Jean-Hubert; Murorunkwere, Seraphine; Janvier, Ndinkabandi; Bours, Vincent; Mutesa, Leon
Global developmental delay (GDD) is defined as a significant delay in two or more developmental domains: gross or fine motor, speech/language, cognitive, social/personal and activities of daily living. Many of these children will go on to be diagnosed with intellectual disability (ID), which is most commonly defined as having an IQ Patau syndrome. Other identified chromosomal abnormalities included 47,XX,+del(9)(q11), 46,XY,del(13)(q34) and 46,XX,der(22)t(10;22)(p10;p10)mat. In conclusion, our results highlight the high frequency of cytogenetically detectable abnormalities in this series, with implications for the burden on the healthcare. This study demonstrates the importance of cytogenetic analysis in patients with GDD/ID and MCA. © The Author . Published by Oxford University Press. All rights reserved. For Permissions, please email: firstname.lastname@example.org.
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.
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.
Blas, Howard I
The Tikvah Program is an overnight camping program at Camp Ramah in New England that serves campers with a range of developmental disabilities. The program has evolved over its 37-year history and includes a camping program, vocational training program, and inclusion program. Select graduates are hired by the camp for summer employment. The Tikvah Program offers a model for serving campers with special needs within a larger "typical" summer camp. Although serving the needs of such campers offers unique challenges, the presence of such a program in a regular summer camp offers tremendous opportunities and benefits for campers with special needs and more typically developing campers.
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.
Irene Wong, Yin-Ling; Stanhope, Victoria
Housing and services for persons with developmental disabilities (DD) have been shaped by the normalization approach, a commitment to full integration within the general community. In contrast, housing and services for persons with psychiatric disabilities (PD) have had various and sometimes conflicting goals, including provision of custodial care, promotion of therapeutic community, and community integration. This cross-field study compares the neighborhood characteristics of publicly-funded housing for the PD and DD populations in a metropolitan community. The aim of the study was to examine whether the contrasting housing approaches are reflected at an ecological level and to consider how these findings relate to the goal of community integration for people with PD and DD. Administrative databases provided residential addresses of 1932 residents with PD living in 297 locations and 1716 residents with DD living in 749 locations in the city of Philadelphia. The 2000 U.S. Census and city's police department database provided information on neighborhood characteristics. Geographic information system (GIS) methodology generated maps displaying the distribution of housing locations in relation to spatial dispersion, distress, stability, safety, and race/ethnic diversity. Statistical analyses compared neighborhood characteristics of the DD and PD populations. Findings indicated that the DD population in supportive housing was more spatially dispersed, and lived in less distressed, less unstable, more secure, but equally racially/ethnically diverse neighborhoods when compared to the PD population in supportive housing. Greater geographic dispersal among persons with DD may be the result of more emphasis on normalization within policies and programs determining the location of their housing. The higher funding levels for housing and residential support for persons with DD also provided programs with the option of placing people in higher income neighborhoods. Given that
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.
Cheung, Phoebe P. P.; Siu, Andrew M. H.
This study compared the patterns of sensory processing among children with autism spectrum disorder (ASD), attention deficit and hyperactivity disorder (ADHD), and children without disabilities. Parents reported on the frequency of sensory processing issues by completing the Chinese Sensory Profile (CSP). Children with disabilities (ASD or ADHD)…
... From the Federal Register Online via the Government Publishing Office DEPARTMENT OF HEALTH AND... Disabilities (AIDD); Notice of Meeting via Conference Call AGENCY: President's Committee for People with Intellectual Disabilities (PCPID), HHS. ACTION: Notice of Meeting via Conference Call. DATES: Wednesday...