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Journal of Policy and Practice in Intellectual Disabilities

Impact factor: 0.803 Print ISSN: 1741-1122 Online ISSN: 1741-1130 Publisher: Wiley Blackwell (Blackwell Publishing)

Subjects: Health Policy & Services, Rehabilitation

Most recent papers:

  • Care in the Community: Home Care Use Among Adults With Intellectual and Developmental Disabilities Over Time.
    Lynn Martin, Hélène Ouellette‐Kuntz, Katherine McKenzie.
    Journal of Policy and Practice in Intellectual Disabilities. September 26, 2017
    Community‐based healthcare services have quickly evolved over the last few decades to respond to the growing population of older adults, and their desire to remain independent in the community. In Ontario, Canada, deinstitutionalization has resulted in all persons with intellectual and developmental disabilities living—and aging, in the community. This paper compares use of home care services in Ontario among adults (age 18–99 years) with and without intellectual and developmental disabilities over time. Home care use over a 5‐year period was compared between a cohort of 46,008 adults with intellectual and developmental disabilities and a random sample of 3,272,080 adults without intellectual and developmental disabilities. Persons with and without intellectual and developmental disabilities received similar types of home care services. Adults with intellectual and developmental disabilities had much higher rates of admission to home care, and at much earlier ages. While this remained true over time, slight differences by age were noted between groups. Higher use at earlier ages suggests that home care services are responding to the needs of adults with intellectual and developmental disabilities. Future research should identify (or develop) best practices for promoting independence in the community for adults with intellectual and developmental disabilities with healthcare needs.
    September 26, 2017   doi: 10.1111/jppi.12171   open full text
  • Invasive Clinical Intervention Education for Social Care Support Workers of Adults: A Review of the Current Literature.
    Louise Hoyle, Michael Brown, Jayne Donaldson, Thanos Karatzias.
    Journal of Policy and Practice in Intellectual Disabilities. September 26, 2017
    As with the general population, people with intellectual disabilities are ageing, are living longer often with coexisting complex needs and with more requiring care and support. The focus of care is community‐based rather than institutional and it is therefore necessary to ensure that the workforce responsible for delivering care has the appropriate knowledge and skills to safely deliver the interventions required. The aim of this review is to evaluate the scope of invasive clinical interventions (ICIs) that social care support workers (SCSWs) are currently delivering and the preparation received to undertake these procedures or the knowledge held about the intervention. A search of educational, health, psychology, and social science databases was conducted, using a variety of combinations of search words to detect relevant literature. Only five studies published between 1999 and 2013 were identified and included in the review. The evidence shows that education can improve social carers' knowledge and when education is undertaken it needs to involve both a theoretical and practice‐related component. The current evidence is limited due to the small number of studies identified and the limitations of the study designs that were adopted. More research is required to identify whether ICIs currently being delivered by these SCSWs and the effectiveness and appropriateness of the education staff are receiving in relation to these.
    September 26, 2017   doi: 10.1111/jppi.12211   open full text
  • Habilitation Service Utilization Patterns Among Children With Mild Intellectual Disability.
    Lena M. Olsson, Elisabeth Elgmark Andersson, Mats Granlund, Karina Huus.
    Journal of Policy and Practice in Intellectual Disabilities. September 26, 2017
    Background There is a need for more knowledge about the utilization of habilitation services outside school among children with mild intellectual disability (ID). Specific aims. The aim of this study was to describe the patterns of habilitation service utilization among children with mild ID living in Sweden. Method A quantitative cross‐sectional total population study was performed using data from service providers’ existing records. Findings The most common types of services utilized were those by physicians, counselors, and psychologists. Compared with children with mild ID who were in special classes, children with mild ID who were integrated into mainstream classes utilized significantly fewer types of services. Increasing age of the child was associated with a lower number of service types utilized. Children integrated into mainstream classes were significantly less likely to utilize habilitation services than children attending special classes. The likelihood of utilizing habilitation services decreased with age. Approximately two‐thirds of the children utilized habilitation services. Discussion It is urgent that integration/inclusion in one organizational system, that is, school, does not result in exclusion in another system, such as pediatric habilitation services, which also aim to promote active participation in society. Pediatric habilitation professionals, teachers, and health units at schools need to interact in a manner so that children with mild ID, independent of type of school setting, have access to disability‐related services outside school.
    September 26, 2017   doi: 10.1111/jppi.12174   open full text
  • A School‐Based Case Study: Developing Interprofessional Competencies to Support Students With Dual Diagnosis.
    Twyla Salm.
    Journal of Policy and Practice in Intellectual Disabilities. September 26, 2017
    This case study provides insight into the ways an interprofessional team developed collaborative competencies to enhance school‐based mental health support for students with a dual diagnosis of intellectual disabilities and mental health illness. The team was anchored by the school division coordinator, two resource teachers, a social worker, and a psychologist. It is also a site for preservice nursing, social work, recreational therapy, and psychology students who were completing their senior practicum in their respective programs. The purpose of this study is to develop a deeper understanding of how preservice and in‐service professionals experience interprofessional collaboration and competency development as a means to support students with dual diagnosis. Interviews were conducted with 21, preservice practicum students and in‐service professionals who participated on the team. Data were recorded, transcribed verbatim and manually aggregated, coded, and themed using two complementary strategies, constant comparison method and initial and focused coding. The Canadian Interprofessional Health Collaborative (CIHC) (Gilbert, ) framework helped illuminate the fundamental components, that is, the competencies, needed to be an effective collaborator. The findings suggest that four of the six CIHC competencies, role clarification, student centeredness, communication and team functioning emerged as core competencies. The practicum students described their experience on the team as an enriching way to develop specialized knowledge, skills, and attitudes with students with dual diagnosis and they continue to serve as advocates in their current positions. Reciprocally, the permanent structure of the interprofessional practicum offered a unique professional development strategy for in‐service professionals. This study queries the need to refine the CIHC model for school‐based mental health settings. It is suggested that the model would be enhanced by a greater emphasis on culturally responsible practice and a greater integration of inclusive education competencies for professionals who work with students who have dual diagnosis in schools.
    September 26, 2017   doi: 10.1111/jppi.12177   open full text
  • The Relationship of Person‐Environment Fit to Perceptions of Autonomy, Competency and Satisfaction Among Older Adults with Developmental Disabilities.
    B. Lynn Hutchings, Erica Chaplin.
    Journal of Policy and Practice in Intellectual Disabilities. September 26, 2017
    The overlay of age‐related cognitive and physical impairments onto existing intellectual and physical disabilities, a paucity of informal social relationships, a limited education and low income levels place the current generation of aging adults with intellectual disabilities at risk of premature behavioral limitations and increased dependency. Person‐environment fit and its relationship to perceptions of autonomy, competency, and satisfaction were explored through qualitative data collected from consumers. Face‐to‐face, in home interviews were conducted with 91 consumers who were asked to assess their own ability to carry out self‐care and household tasks. Interviewers then observed consumers performing these tasks. A multi‐stage data analysis process identified emergent themes that included issues related to autonomy versus dependence, belonging versus isolation, residential permanency versus transience, and social inclusion versus exclusion. The study also collected quantitative data, both from consumers and interviewers acting as observers. Consumer ratings of their own ability were consistently lower than observer ratings. Fostering home‐based independence and autonomy among people aging with developmental disabilities are discussed in relation to perspectives on the home environment.
    September 26, 2017   doi: 10.1111/jppi.12175   open full text
  • Impact of an Individualized Planning Approach on Personal Outcomes and Supports for Persons With Intellectual Disabilities.
    Leanne Gosse, Dorothy Griffiths, Frances Owen, Maurice Feldman.
    Journal of Policy and Practice in Intellectual Disabilities. September 26, 2017
    Planning initiatives for individuals with intellectual disabilities (ID) have shifted from traditional planning primarily conducted by caregivers to an individualized planning approach controlled by the person with ID him/herself. The goal of this paradigm shift is to increase individualization of supports to accomplish personal objectives and improve quality of life. Despite the widespread acceptance and promotion of individualized planning, there has been little empirical research to demonstrate its effectiveness. This study compares traditional planning to individualized planning on supports obtained and personal objectives accomplished using a randomized between‐group design. Persons receiving an individualized planning process improved in both supports and personal outcomes as compared to the traditional planning group. When the traditional planning group subsequently received individualized planning, they replicated the results of the first individualized planning group. The findings support implementation of an individualized planning approach in service agencies for individuals with ID.
    September 26, 2017   doi: 10.1111/jppi.12209   open full text
  • Factors Associated with Age of Diagnosis in Four Neurogenetic Syndromes.
    Colin Reilly, Lelia Murtagh, Joyce Senior.
    Journal of Policy and Practice in Intellectual Disabilities. August 29, 2017
    Background: Early identification of developmental disabilities is advocated, so that affected children and families can be adequately supported. There is a lack of data on factors associated with earlier diagnosis in four of the most common neurogenetic syndromes. Aims: The aim was to identify the mean ages of diagnosis in four of the most common neurogenetic syndromes and identify factors associated with early diagnosis. Method: The parents of school‐aged children (4–19 years) with one of the four genetic syndromes (Fragile X syndrome, Prader–Willi syndrome, Williams syndrome, 22q11.2 deletion syndrome (22qdel)) in the UK and Ireland were surveyed and asked about age of diagnosis and the presence of a range of medical conditions. Findings: Mean age of diagnosis was lowest in Prader–Willi syndrome (0.47 years), and this was significantly lower than Fragile X syndrome (3.52 years), Williams syndrome (1.76 years), and 22qdel (3.21years) (all p < 0.001). Factors associated with diagnosis before 3 years in 22qdel included (1) the presence of a cardiac difficulty (OR 4.9 (95% CI 1.1–21.0)) (2) hearing difficulty (OR 2.5 (95% CI 2.01–70.8)), and (3) chronological age <12 years (OR 9.1 (95% CI 1.8–46.0)). The only factor significantly associated with diagnosis before 18 months in Williams syndrome was the presence of a cardiac difficulty (OR 2.9 (95% CI 1.1–8.3)). None of the assessed predictors was associated with a diagnosis of Fragile X syndrome before 3 years of age. Discussion: Mean age of diagnosis differed significantly in the four neurogenetic syndromes. While the presence of medical factors is likely to lead to earlier diagnosis in 22qdel and Williams syndrome, factors associated with earlier diagnosis in Fragile X syndrome were not identified. Delays in diagnosis could have significant implications with respect to understanding of children's needs and nature and level of support accessed by affected children and their families.
    August 29, 2017   doi: 10.1111/jppi.12202   open full text
  • Applying a General Measure of Frailty to Assess the Aging Related Needs of Adults with Intellectual and Developmental Disabilities.
    Katherine McKenzie, Hélène Ouellette‐Kuntz, Lynn Martin.
    Journal of Policy and Practice in Intellectual Disabilities. June 18, 2017
    Adults with intellectual and developmental disabilities often experience premature aging and high levels of frailty. Frailty characterizes health complexities and identifies adults with increased risks for adverse outcomes. This paper compared the prevalence of frailty amongst adults (aged 18–99 years) with and without intellectual and developmental disabilities. Frailty was measured using the Frailty Marker, based on the Adjusted Clinical Groups‐Predicative Model, and was compared between a cohort of 51,138 adults with intellectual and developmental disabilities and a random sample of 3,272,080 adults without intellectual developmental disabilities. Approximately 9% of persons with intellectual and developmental disabilities were frail, compared to only 3% of persons without intellectual and developmental disabilities. Women, older adults, and adults with mental illness or addiction(s), were more likely to be frail. Adults with intellectual and developmental disabilities are increasingly vulnerable as they age. However, to appropriately characterize frailty in this population, measures should be more inclusive of health characteristics and fluctuations that are related to frailty. Future research should investigate alternative measures of frailty for persons with intellectual and developmental disabilities, including measures derived from standardized health assessments, to meet the needs of the aging population.
    June 18, 2017   doi: 10.1111/jppi.12197   open full text
  • Trauma‐Informed Day Services: An Initial Conceptualization and Preliminary Assessment.
    John M. Keesler, Cory Isham.
    Journal of Policy and Practice in Intellectual Disabilities. June 08, 2017
    Trauma‐informed care (TIC) is a systems‐focused philosophy of service delivery based upon principles of choice, collaboration, empowerment, safety and trustworthiness that recognizes the pervasive impact of trauma across the human experience. In a grassroots effort, one organization developed an innovative, trauma‐informed day program to meet the needs of individuals with intellectual and developmental disabilities (IDD) who were recently deinstitutionalized. The present study is intended to provide an initial conceptualization and preliminary assessment of TIC within IDD services in order to understand its impact among individuals and staff. The study sought to answer the following questions: Has the program's culture been stable over time? How have individuals’ behaviors changed over time? What have been the experiences of the program's staff members with TIC? Through a mixed methods design, secondary data analysis and semi structured staff interviews were used to assess the impact of TIC. Findings revealed an initial strong presence of choice, collaboration, empowerment, safety, and trustworthiness within the program's culture, with non significant changes at follow‐up. Significant reductions were noted in overall challenging behavior, aggression, and PRN medication usage; while non significant changes were noted in physical interventions with the exception of “other” interventions (i.e., least restrictive) which significantly increased. Three major categories emerged from the qualitative data (making a difference, recognizing progress and compromising factors), illuminating staff satisfaction with work experiences, individuals’ progress, and factors that challenged fidelity to TIC. The study provides a preliminary conceptualization and evidence for the efficacy of the integration of TIC into IDD services despite methodological limitations and concerns regarding the use of physical interventions. Directions for future research are presented.
    June 08, 2017   doi: 10.1111/jppi.12206   open full text
  • Parent‐Implemented Language Interventions for Children with a Developmental Delay: A Systematic Review.
    Danielle J. A. Te Kaat‐van den Os, Marian J. Jongmans, M(Chiel). J. M. Volman, Peter E. M. Lauteslager.
    Journal of Policy and Practice in Intellectual Disabilities. June 08, 2017
    Background: Young children with a developmental delay (DD) show significant delays in communication and language development. Although several parent‐implemented language intervention programs have been developed to facilitate the communication and language abilities of children with a DD, no systematic review has examined the effects of these programs. Method: The literature search for this systematic review focused on parent‐implemented early language interventions for children with a DD age 1–5 years. Searches were conducted in PubMed, Scopus, and Web of Science (search period 1974–2015). Level of evidence (levels I and II) as developed by the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) and study effectiveness were evaluated. Seven intervention studies met the inclusion criteria. Interventions comprised the Hanen Parent Program, Responsive Education/Prelinguistic Milieu Teaching, and Enhanced Milieu Teaching. A substantial proportion of children with a DD also had a diagnosis of Down syndrome (DS). Results: Five of the seven studies reported a significant effect of intervention on parent responsiveness, child communication, and aspects of language interactions (favoring intervention groups over control groups), but no studies reported significant effects of intervention on expressive language vocabulary. Conclusions: Intervention programs aimed at facilitating the communication and language development of children with a DD appear to improve a child's general communication abilities but have limited impact on expressive language development.
    June 08, 2017   doi: 10.1111/jppi.12181   open full text
  • Safety First! The Topic of Safety in Reversed Integration of People With Intellectual Disabilities.
    Eleonora Venema, Carla Vlaskamp, Sabine Otten.
    Journal of Policy and Practice in Intellectual Disabilities. June 07, 2017
    Background: Physical integration is believed to be a precondition for social integration. One might expect that in so‐called reversed integration, where people without intellectual disabilities (ID) actively choose to live next to people with ID, conditions for physical integration are more optimal, and social integration is enhanced. If this hypothesized benefit of reversed integration settings indeed holds, however, is yet unknown. Specific aims: The aim of the present study is to examine barriers for social integration of people with ID. In this context, the present article focuses on the role of safety and safety concerns. Method: A semi structured interview was conducted with 28 direct support professionals (DSPs), 25 family members, and 25 neighbors, aimed at their attitude toward social integration in a reversed integration neighborhood. Several topics were dealt with, like the neighborhood and contact between people with ID and neighbors. There were no explicit questions about safety in the interview. Findings: The topic of safety was spontaneously mentioned 90 times by 26 DSPs, 15 times by 9 neighbors, and 36 times by 18 family members. Three main themes were found in the total group of statements touching upon the issue of safety: environmental aspects, client characteristics, and working conditions. The most often mentioned subthemes were the openness of the neighborhood and the traffic. Discussion: In reversed integration, safety is still a highly relevant topic and of great concern for the DSPs and the family members. DSPs are more concerned with controlling risks and keeping everybody safe than looking at the opportunities the new environment offers, like enhancing social integration.
    June 07, 2017   doi: 10.1111/jppi.12179   open full text
  • Rethinking FQoL: The Dynamic Interplay Between Individual and Family Quality of Life.
    Femke Boelsma, Irene Caubo‐Damen, Alice Schippers, Menco Dane, Tineke A. Abma.
    Journal of Policy and Practice in Intellectual Disabilities. March 01, 2017
    Family quality of life (FQoL) is an emerging concept to understand and improve the well‐being and quality of life (QoL) of families. While there has been a lot of effort to conceptualize life domains of families and measurement tools are devised, few studies concentrate on an in‐depth understanding of FQoL. The specific aim of the current study is to understand the relation between individual QoL and FQoL, by studying families with a child/children with intellectual and developmental disabilities (ID/DD) in the Netherlands. This can contribute to a stable foundation of the concept of FQoL. Methods: An explorative case study design was used, in which the parents, sibling, and child with ID voiced their thoughts on their FQoL. The presented case has been analysed through thematic and narrative analysis. A father and a mother with a child with an intellectual disability have joined the research team as co‐researchers. The relational dynamics found within the family illuminated an interactive pattern in which the son with ID acted as an Emperor, creating a Golden Cage for other family members and Umbilical Ties among them. The family portrait shows that FQoL is a dynamic and relational concept. By making strict distinctions between individual QoL and FQoL, the dynamics between family members and the way they work alone and/or together to ensure the well‐being of the family and its members can easily be overlooked. In addition to the common‐sense notion that FQoL and QoL support each other, conflicts and tensions can occur.
    March 01, 2017   doi: 10.1111/jppi.12224   open full text
  • The Nature of Quality of Life: A Conceptual Model to Inform Assessment.
    Alison Alborz.
    Journal of Policy and Practice in Intellectual Disabilities. March 01, 2017
    The phenomenon of quality of life (QoL) has been subject to ongoing debate and many models have been proposed. Over the latter half of the 20th century, QoL models have proliferated, particularly in relation to the population with intellectual disabilities (ID) which have arguably improved living conditions and helped to guard against abuse. While this is a complex phenomenon, there is agreement across a wide literature that QoL has two distinct aspects relating to the individual (whether disabled or not) and the resources necessary for a “good” QoL. Considerable support is also provided for a number of diverse but robust domains. However, how the “nature” of QoL is conceptualized is unclear. The article reviews multidisciplinary research on QoL and goes on to present a theoretical model of the nature of QoL that encompasses identified domains. The model is based on Maslow's hierarchy of needs (1987) which defines its scope; Sen's Capability Approach (1985), which elaborates the resource context impacting QoL; and Ryan and Deci's Self‐Determination Theory (2000), which describes person‐context interactions important to personally valued QoL. This conceptualization was framed within four facets—Foundational well‐being; Psychosocial well‐being; Status; and Autonomy—each of which have two aspects: “individual,” describing personal needs that, when fulfilled, are associated with better QoL, and “context,” describing resources necessary to enable individual need fulfilment. The proposed QoL model demonstrates an intellectually lucid structure supported by literature. It does not attempt a definitive specification of all QoL constituents but proposes that delineation must be determined within the particular circumstances of a proposed assessment. Once determined, an exploratory approach to assessment is proposed. It is suggested this model represents a useful “atlas” on the nature of QoL to guide development of assessments aiming to inform service developments or interventions.
    March 01, 2017   doi: 10.1111/jppi.12225   open full text
  • The Impact of Support Services Teams: Community‐Based Behavioral Health Support Interventions.
    Randall Owen, Anne Bowers, Tamar Heller, Kelly Hsieh, Robert Gould.
    Journal of Policy and Practice in Intellectual Disabilities. December 27, 2016
    Background: Community capacity to serve people with intellectual/developmental disabilities (IDD) and behavioral health challenges is often limited. Using interdisciplinary teams to work with stakeholders, including people with IDD, their families, providers, and agencies may help increase this capacity. One example in the United States is the Support Services Teams (SST) program of a midwestern state. Specific Aims: This research aimed to identify changes before to after referral to SST in the proportion of people who used and the total number of admissions/visits, and prescriptions; and the Medicaid liability associated with emergency room (ER), hospital, and pharmacy services for SST participants. Second, the research described the SST participants and services provided. Method: The authors used Wilcoxon and McNemar's tests to compare hospital, ER, and pharmacy outcome measures for 109 people who were referred to SST and had 12 months of data before and after referral. Separate analyses were also conducted for the 88 people who remained in the community after referral and the 21 people who had short institutional stays. Findings: For the full population of SST participants, the proportion of people with a hospital admission, the total number of hospital admissions, and Medicaid liability for hospitalizations significantly decreased from before to after referral to SST. Medicaid liability for prescriptions significantly decreased for people with an institutional stay. Changes in the other outcomes trended downwards, although not significantly. Discussion: This study shows that the use of interdisciplinary teams for people with IDD and behavioral health challenges can be effective in reducing the use of services. These teams can help to build community capacity to work with these individuals and avoid more costly ER and hospital services and reduce the number of medications prescribed.
    December 27, 2016   doi: 10.1111/jppi.12186   open full text
  • Content of Personalized Socioeducational Programs for Adults with Profound Intellectual and Multiple Disabilities. The Risk of Restricting Perspectives in Adulthood.
    G. Petitpierre, J. Gyger, L. Panchaud, S. Romagny.
    Journal of Policy and Practice in Intellectual Disabilities. December 23, 2016
    Supporting individuals with profound intellectual and multiple disabilities (PIMD) in the intricate pattern of their relationships with their physical and social environment undoubtedly represents the main challenge that faces those closely involved with them, and this applies to individuals of all ages, including adults. In an effort to find out more about the priorities applied in the support of adolescents and adults with multiple disabilities in French‐speaking Switzerland, we have analyzed the content of personalized programs (PP's) with particular attention to the long‐term objectives. The programs of 58 individuals with profound intellectual and multiple disabilities (aged 16–55) were analyzed under conditions of strict anonymity. They had been selected using a stratified random sampling process. The content was analyzed in terms of theme and category in order to identify and quantify the content of the objectives and their number. The results indicate an average of 10–11 objectives per person. The number of objectives falls as the individuals reach adulthood. The programs of adolescents who attend day schools contain significantly more objectives that those of young people in residential schools. It was apparent in all the programs that less importance is attached to emotional, conceptual, and cognitive aspects. The results highlight the under‐investment in some functioning spheres and reveal a restriction of perspectives in the programs of adults with PIMD. Several interpretations are possible. Lines of action have been identified in order to support a life‐span perspective and break through the current barriers.
    December 23, 2016   doi: 10.1111/jppi.12178   open full text
  • When Funding Meets Practice: The Fate of Contemporary Therapeutic Approaches and Self‐Determination in a Consumer‐Centred Disability Funding Scheme.
    Myfanwy McDonald, Kate Davis, Nicole Mahar.
    Journal of Policy and Practice in Intellectual Disabilities. December 21, 2016
    This article highlights the potential for a consumer‐centred model of funding (the Australian National Disability Insurance Scheme, or the NDIS), to undermine therapeutic approaches in Early Childhood Intervention (ECI) that facilitate self‐determination amongst young children with a disability or developmental delay and their families. This process of undermining is not intentional but a consequence of deeply held cultural assumptions regarding how health care should be delivered and assessed. The article brings together multiple “strands” of evidence and theory regarding self‐determination, disability funding, therapeutic approaches within ECI, and cultural beliefs regarding health to demonstrate how a funding model founded on the principle of self‐determination could potentially undermine a therapeutic approach that supports the very same principle. The potential for this consumer‐centred disability funding (CCDF) scheme to undermine contemporary therapeutic approaches highlights a significant challenge—how to communicate the complexity of the evidence regarding effectiveness of different therapeutic approaches to parents of children with a disability without overwhelming them, and how to ensure that this CCDF scheme facilitates informed, meaningful choices for families.
    December 21, 2016   doi: 10.1111/jppi.12195   open full text
  • Geographical Barriers to Mental Health Service Care Among Individuals With an Intellectual Disability in the Republic of Ireland.
    Hugh Ramsay, Niamh Mulryan, Philip McCallion, Mary McCarron.
    Journal of Policy and Practice in Intellectual Disabilities. December 21, 2016
    People with an intellectual disability (ID) are more likely to experience mental health difficulties than others. The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) states that health services should be provided close to people's own communities. This article examines differences in access to psychiatry services for those with an ID according to geography, in the context of a small European country (Republic of Ireland). The sample consisted of 753 individuals aged 40 and over with ID in the Republic of Ireland, with data collected from the Intellectual Disability Supplement of the Irish Longitudinal Study on Aging (IDS‐TILDA). The primary outcome of interest was attendance with any psychiatrist and the primary independent variables were area of residence (health service region and degree of county urbanicity). Logistic regression was used to analyze associations, unadjusted and then controlling for age group, gender and level of ID. Secondary analysis examined factors associated with anti‐psychotic prescription without psychiatrist supervision. Treatment by a psychiatrist was associated with both health region (p = 0.029) and degree of urbanicity (p = 0.015) before controlling for group differences but only the health region was significantly associated after controlling for age, gender and level of ID. Antipsychotic use without a psychiatrist was associated with degree of urbanicity (p = 0.036) but not with health service region (p = 0.989). Geographic factors are associated with access to mental health services among those with ID in the Republic of Ireland. This may be partly due to movement of people with ID away from their area of origin, highlighting the need for locally tailored specialist ID mental health teams and for further research into barriers to treatment. Additional work in other countries will further understanding of similar roles of geographic factors in mediating mental health services access.
    December 21, 2016   doi: 10.1111/jppi.12182   open full text
  • Population Aging and Intellectual and Developmental Disabilities: Projections for Canada.
    Hélène Ouellette‐Kuntz, Lynn Martin, Katherine McKenzie.
    Journal of Policy and Practice in Intellectual Disabilities. December 21, 2016
    Population aging is expected to have a dramatic impact on the need for services and supports among adults with intellectual and developmental disabilities. The expected size of the population of older adults affected remains unknown. The aims of this paper are to present methods to project the age‐structure of the adult population with intellectual and developmental disabilities 10 years into the future, apply those methods to data from Ontario, Canada, and discuss their relative merit. Two methods were used. The first method relies on knowledge of the prevalence of intellectual and developmental disabilities across age groups in a given population and the corresponding census estimates for future years for the same age groups in that population. The second method requires knowledge of the age‐structure of the adult population with intellectual and developmental disabilities as well as age‐specific mortality rates for this population. This second method was applied using two sets of available mortality rates. Projections of the number of adults with intellectual and developmental disabilities 45–84 years of age over a 10‐year period vary depending on the method used. The first method suggests a moderate increase (20.5%) while the second method suggests a small increase (4.1–8.4%) in that age group. It is important to be able to critically examine methods and assumptions used when claims are made about population growth and aging in relation to intellectual and developmental disabilities. Accurate age‐specific prevalence data and detailed population‐level mortality statistics specific to intellectual and developmental disabilities are required to plan for aging‐related services.
    December 21, 2016   doi: 10.1111/jppi.12172   open full text
  • Quality of Life Among Families of Children With Intellectual Disabilities: A Slovene Study.
    Jan Schmidt, Majda Schmidt, Ivan Brown.
    Journal of Policy and Practice in Intellectual Disabilities. December 15, 2016
    The main goal of the study was to provide and contrast data on quality of life for families in Slovenia that have children with intellectual disabilities and developmental disabilities (IDD) and families that have children with intellectual disabilities and autism spectrum disorders (ASD). The sample comprised 25 families with children with IDD and 19 families with children with ASD selected from schools in several villages in Slovenia. The data were collected using the FQOLS‐2006. The data analysis exploring the relationship between the two study groups (IDD and ASD) using the six measurement dimensions (Importance, Attainment, Satisfaction, Opportunities, Initiative, Stability) showed the mean ratings for all six measurement dimensions were higher for the IDD group than for the ASD group, although both groups rated Importance quite highly. Within the nine domains examined, there were some differences between the two groups. For the two main outcome measures, Attainment and Satisfaction, the scores for Satisfaction were consistently higher for the IDD group than for the ASD group. A combination of qualitative and quantitative data revealed that two of the nine domains, Family Relationships and Community Interaction, appear to contribute positively to family quality of life for both groups in this sample, while family life relating to the other seven domains requires remediation. Data from this family quality of life study provides evidence to suggest to policy makers and service providers that there might be a substantial amount of work to be done in the future to provide appropriate and efficient support for families with children with disabilities, especially for those with ASD, so that these families can lead lives of quality.
    December 15, 2016   doi: 10.1111/jppi.12188   open full text
  • Community Living for Adults with Intellectual Disabilities: Unravelling the Cost Effectiveness Discourse.
    David Felce.
    Journal of Policy and Practice in Intellectual Disabilities. December 09, 2016
    The requirements for a rigorous cost‐effectiveness analysis are considered. The evidence base on services for people with ID is then reviewed with an emphasis on the transition from institutional services to those in the community and postdeinstitutionalization research on the costs and outcomes of different forms of community provision. Despite certain limitations, a number of conclusions are possible: (a) overall, community services provide for a better quality of life than institutional care; (b) whether community service costs are more or less than institutional costs may depend on factors such as funding mechanisms, wage rates and the level of investment in institutional services prior to deinstitutionalization, that are likely to differ between countries; (c) economies of scale are not pervasive but may arise among settings with very small group sizes depending on staffing model; (d) the costs of staffing are a major element in total service package costs and there is scope to relate staff input more precisely to the needs and characteristics of service users; (e) the factors responsible for variation in costs and outcomes are incompletely understood; (f) however, resource input does not appear to result in enhanced outcome; (g) greater staff input is inefficiently translated into performance which affects service users; and therefore, (h) operational culture and staff training and management are important determinants of ultimate outcome. More research is required on the factors that drive costs on the one hand and outcomes on the other. An international consensus is required on the important variables to be described when doing research on residential support arrangements, so that relationships between environmental characteristics and either costs or outcome can be identified with greater confidence.
    December 09, 2016   doi: 10.1111/jppi.12180   open full text
  • Quality of Life—Challenges to Research, Practice and Policy.
    Roy I. Brown.
    Journal of Policy and Practice in Intellectual Disabilities. December 09, 2016
    Quality of life (QOL) has been developing in the field of IDD since the early 1980s, and ever since there have been research, models, and theoretical constructs along with many recommendations. Ignored in its early development, QOL is now seen as important for support and intervention. The research has resulted in new insights yet there remain many challenges, three of which are discussed in this article. (1) Much QOL research requires the acceptance of parent and allied commentary that is regarded as subjective and frequently carries less weight than objective evidence. This can raise questions across disciplines regarding the validity and therefore the value of QOL in the field of research, practice, and policy. (2) Family quality of life (FQOL) research, which is an outgrowth of QOL in IDD, has resulted in a number of questions concerning our perception and management of family challenges. One is our understanding or lack of understanding of the process of inclusion, which is discussed suggesting the need for a much more clear articulation of exclusion and inclusion and its relevance to research and application within a QOL context. (3) QOL involves an holistic approach and much of this approach has been researched and applied in the field of IDD. It is posited in this article that the QOL approach should now be seen as a paradigm for research, policy, and intervention in which other procedures can be explored and addressed. To do so the paradigm requires further development and integration and an understanding of its specificity and breadth of potential application. Each of these issues is discussed and recommendations are put forward for action under the headings of Perceptual and Objective Data, Education of Personnel, Further Research and Application, and Policy Integration.
    December 09, 2016   doi: 10.1111/jppi.12185   open full text
  • The Evidence for Easy‐Read for People With Intellectual Disabilities: A Systematic Literature Review.
    Rebekah Joy Sutherland, Tom Isherwood.
    Journal of Policy and Practice in Intellectual Disabilities. November 16, 2016
    Producing accessible information for people with intellectual disabilities has been seen as a priority for the past 20 years. Easy‐read resources are now widely available and several guidelines have been produced to support their development. However, little is known about the effectiveness of easy‐read resources and the specific components that make it effective. A systematic review of the literature in electronic databases (Medline, Embase, BNI, CINAHL, HMIC, PsycINFO, ERIC, PubMed, and Cochrane Library) conducted between November 2013 and January 2014 yielded 11 publications that attempted to evaluate the impact of easy‐read resources. The large variation in methodology among studies prevented a direct comparison of results; however, there were mixed findings concerning the impact of adding illustrations to written text on comprehension. A reader's level of familiarity with symbols emerged as an important factor, particularly with more abstract symbol systems that require some learning. Photographs and illustrations were generally found to be helpful, although it was acknowledged that these can be confusing and clear explanations are needed to ensure the correct message is conveyed. The format and level of difficulty of the text played an important role in the overall accessibility of information and particular linguistic features were associated with increased understanding. The methodological limitations of these studies were also considered and used to inform recommendations for future research. More attention needs to be focused on evaluating and distributing easy‐read information, as well as producing it.
    November 16, 2016   doi: 10.1111/jppi.12201   open full text
  • Evaluating the Efficacy of a Special Education Advocacy Training Program.
    Meghan M. Burke, Samantha E. Goldman, Melanie S. Hart, Robert M. Hodapp.
    Journal of Policy and Practice in Intellectual Disabilities. October 28, 2016
    Increasingly, parents are relying on advocates to ensure that children with disabilities receive appropriate educational services. As agencies begin to train advocates to work with families, it is necessary to evaluate the efficacy of such advocacy training programs. This study evaluated the efficacy of the Volunteer Advocacy Project (VAP), a 40‐h training workshop that has been delivered since 2008 to six cohorts live and via webcasts. The aim of the study was to determine whether the VAP increased the knowledge and advocacy skills of its trainees and how trainee and training characteristics related to the effectiveness of the training. This study examined changes from pretest to posttest knowledge and advocacy skills of 90 trainees of the VAP. We also examined interactions between pre/post change and trainee and training characteristics. Participants demonstrated significant gains from pre‐ to posttests in their knowledge of special education and in their advocacy skills. Those participants who partook of the training in latter cohorts and at distance sites showed more progress in special education knowledge. Increases in advocacy skills differed by type of participant: compared to parent participants, professionals demonstrated significantly greater pre/post test increases in advocacy skills. This study has important implications for researchers, practitioners, and policymakers.
    October 28, 2016   doi: 10.1111/jppi.12183   open full text
  • Comparing Generational Differences in Persons With Down Syndrome.
    Antonia Coppus.
    Journal of Policy and Practice in Intellectual Disabilities. October 25, 2016
    Due to advances in care and medical treatment there has been a steady improvement in the life expectancy and quality of life for persons with Down syndrome (DS). It is not known if the increase in longevity will also mean that age‐dependent diseases in a younger generation of adults with DS will occur at a later age. Comparing two generations of adults can give us insight into the different health aspects experienced by adults with DS. Methods: A prospective longitudinal DS study cohort was set up, consisting of participants at a DS outpatient clinic. This clinic provides a yearly multidisciplinary DS Health Watch program. Since its inception, 141 persons have agreed to participate in a longitudinal prospective study, the “Health Watch study.” They visited the outpatient clinic annually from 2007 to 2015, a mean follow‐up of about 5 years (0.1–8.4 years). The mean age of the participants was 33.9 years (18–70 years). Of those, 25% were younger than 20 and 25% were older than 44. Cross‐sectional data were used to compare the generations. Results: Findings are baseline data of this longitudinal “Health Watch study.” The results show a discrepancy in health conditions and functional characteristics between those in the age category of 44 years and older and those below the age of 20 years. Conclusion: This study suggests that differences observed between the generations are possible predictors of a healthier state and longer life expectancy for a younger generation of adults with DS. Only a longitudinal follow‐up can confirm these findings.
    October 25, 2016   doi: 10.1111/jppi.12214   open full text
  • Supporting Volunteering Activities by Adults With Intellectual Disabilities: An Explorative Qualitative Study.
    Monika T. Wicki, Simon Meier.
    Journal of Policy and Practice in Intellectual Disabilities. October 23, 2016
    A large number of adults with and without disabilities engage in volunteering activities, allowing them to meet new people, providing them with the opportunity to learn new skills, to build their confidence, and to contribute to society. However, in previous studies of volunteers with intellectual disabilities (ID), it has been shown that this group is rarely involved in volunteering. This study explores the challenges, opportunities, and support needs of such volunteers and develops a heuristic model to support volunteering by people with ID in Switzerland. Semistructured interviews were conducted with a convenience sample of six volunteers with ID. The analysis was based on reflexive grounded theory. Volunteering is one way in which people with ID can participate in society and receive recognition for their engagement. Basic needs, personal motivation, and social recognition are central for volunteers with ID. A heuristic model to support volunteering based on personal and social reasons of individuals with ID is developed. By receiving the appropriate support, people with ID can thus contribute by volunteering on the same terms as volunteers without disabilities. The present findings shed some light on ways to increase the rate of volunteering by people with ID. While the present model can help to identify the type of support appropriate for people with disabilities, future research should aim to verify the outcomes of this study in a larger sample.
    October 23, 2016   doi: 10.1111/jppi.12207   open full text
  • Childhood Victimization in a National Sample of Youth with Autism Spectrum Disorders.
    Rebecca D. Pfeffer.
    Journal of Policy and Practice in Intellectual Disabilities. October 19, 2016
    There are a number of hidden populations in the United States whose victimization goes undetected and unreported. This study aims to assess the victimization experiences of one such population: American children diagnosed with autism spectrum disorders (ASDs). Utilizing the Juvenile Victimization Questionnaire (JVQ), this study obtained past‐year and lifetime prevalence rates of interpersonal violence in a sample of children with ASDs (N = 262). Results showed that almost 89% of these children had experienced an incident of victimization in their lifetime, while almost as many (82.1%) had experienced an incident within the last year. Among those who had been victimized once within the last year, 92% experienced at least a second victimization within that same time period, pointing to significant levels of poly‐victimization. Risk ratios confirm that if a child experiences an incident of victimization in the past year, s/he is at risk to experience another type of victimization during that time frame, no matter what type of initial victimization exposure was examined. Previous research specifically addressing the victimization of children with ASDs in the United States has been limited and often focuses on a specific form of victimization, such as bullying. Implications include considering the impact of exposure to multiple forms of victimization and addressing the possibility of long‐term trauma resulting from chronic exposure to victimization.
    October 19, 2016   doi: 10.1111/jppi.12203   open full text
  • Family Caregivers of Individuals with Intellectual and Developmental Disabilities: Experiences with Medicaid Managed Care Long‐Term Services and Supports in the United States.
    Heather J. Williamson, Elizabeth A. Perkins, Annie Acosta, Maureen Fitzgerald, Jui Agrawal, Oliver T. Massey.
    Journal of Policy and Practice in Intellectual Disabilities. October 19, 2016
    A majority of individuals with intellectual and developmental disabilities need the support of a family caregiver. In the USA, more states are transitioning to a managed care model to provide long‐term services and supports (LTSS) and family caregivers are vital partners in the successful management of LTSS. This study's purpose is to illustrate the lived experience of receiving LTSS in a managed care model from the family caregiver perspective. In‐depth semi‐structured interviews were completed with 16 caregivers in four states with Medicaid managed LTSS (MLTSS). The themes include the importance of the family caregiver as supported and active partners in the provision of MLTSS, the family caregiver experiences with care coordination and access to services in MLTSS, and the family caregivers’ overall impression of MLTSS. Results indicate caregiver advocacy is critical to coordinating needed MLTSS and family support services help caregiver's maintain their vital role in the MLTSS system. Access to services and care coordination in MTLSS varies depending on state of residence. Some caregivers experienced less flexibility in the provision of services and supports and limited access to services making it more complicated for them to feel supported in their caregiving role. Care coordination in MLTSS was largely seen as paperwork processing function. Family caregivers can provide a wealth of knowledge from lived experiences on best practices for MLTSS. Given the move to more home and community‐based services, the role of the family caregiver as an active partners in MLTSS will remain the reality for many individuals with IDD. Family caregivers are a key component in MLTSS and more needs to be done to encourage their involvement in the design and oversight of MLTSS. More research is needed to explore best practices for effective stakeholder engagement in the provision of MLTSS.
    October 19, 2016   doi: 10.1111/jppi.12198   open full text
  • The Effectiveness of a Parent Legislative Advocacy Program.
    Meghan M. Burke, Linda Sandman.
    Journal of Policy and Practice in Intellectual Disabilities. September 19, 2016
    Although parents of students with disabilities have several rights accorded by the Individuals with Disabilities Education Act (IDEA), they infrequently participate in legislative advocacy. Given that Individuals with Disabilities Education Act is expected to be reauthorized within the next few years, it is necessary to educate parents of students with disabilities to engage in broader systemic change. Using a culturally and linguistically diverse sample, this study evaluated the effectiveness of a parent advocacy program. We examined whether the program increased the empowerment, knowledge, and motivation of the participants. We also examined the long‐term effects of the advocacy program. Using pre‐ and postsurveys, we measured change in knowledge of special education and the legislative process, empowerment, and public service motivation of 41 participants in the program. We also conducted 6‐month, follow‐up surveys with 29 (70.7%) of the participants to measure their legislative advocacy activities. Results indicated that participants demonstrated significant gains in empowerment, knowledge (of special education and the legislative process) and public service motivation. Also, after attending the program, participants engaged in legislative advocacy. This study has important implications about parent legislative advocacy for researchers, practitioners, and policymakers.
    September 19, 2016   doi: 10.1111/jppi.12173   open full text
  • Involving Service Users with Intellectual Disability in Research: Experiences from the STOP Diabetes Study.
    Freya Tyrer, Alison J. Dunkley, Rebecca Spong, Satheesh K. Gangadharan, Sabyasachi Bhaumik, Kamlesh Khunti.
    Journal of Policy and Practice in Intellectual Disabilities. September 18, 2016
    The involvement of service users (people who use health and social care services) in research is central to UK policies, is an integral component of many research funding programs and improves the quality and uptake of research. People with intellectual disability are often excluded from research involvement. The purpose of this article is to describe how adult service users with intellectual disability were involved in the early stages of a diabetes screening study conducted in Leicestershire, UK. People who volunteered were involved in five key areas: publicity, study documentation and process development, acceptability of measures, recruitment of research staff, and training of staff. Service users helped with logo selection, publicity materials, designing art work, raising awareness of the study, study documents, rehearsing clinics, and recruiting and training research staff. Our findings demonstrate that with careful planning adults with intellectual disability can meaningfully be involved and benefit from involvement in research. We look forward to continued involvement with service users with intellectual disability in future research studies.
    September 18, 2016   doi: 10.1111/jppi.12176   open full text
  • Investigating the Lived Experience of People with Down Syndrome with Dementia: Overcoming Methodological and Ethical Challenges.
    Karen Watchman.
    Journal of Policy and Practice in Intellectual Disabilities. June 25, 2016
    Adults with Down syndrome are at increased risk of dementia at a significantly younger age and remain under‐represented as participants in dementia‐related research. Because little is known about their personal experiences either immediately postdiagnosis or as dementia progresses, there is little opportunity that shared individual experiences can shape future policy and practice. To remedy this omission, the author examined methodological and ethical challenges identified as part of a research study that included people with Down syndrome affected by dementia. It has been contended that traditional qualitative approaches are less effective when participants are affected by changing cognitive functioning and reduced verbal communication. To counteract this contention overt participant observation and an adapted narrative research method were used as part of a three‐year longitudinal study to help better understand the lived experiences of three adults with Down syndrome affected by dementia. Methodological and ethical challenges were shown to collide, and factors contributing to this effect included identifying process consent, accurate representation of participants, the role of and relationship with the researcher, participants, lack of awareness of their diagnosis of dementia, and need to recognize the importance of social interaction while maintaining academic rigor. Reflections are proffered on two conceptual and practice issues, with a call for both to be recognized and addressed in terms of future policy and practice. First is a lack of awareness of a sense of “self” or identity, resulting in individuals with Down syndrome and dementia being defined by their situation rather than individual preference or need. Second is the lack of information postdiagnosis about dementia being shared with people who have Down syndrome.
    June 25, 2016   doi: 10.1111/jppi.12167   open full text
  • Effect of Taekwondo Training on Lower Body Strength and Balance in Young Adults with Down Syndrome.
    Kathy Carter, Michael Horvat.
    Journal of Policy and Practice in Intellectual Disabilities. June 25, 2016
    Research with individuals with Down syndrome (DS) suggests that increasing strength and balance may lead to increases in independence and self‐reliance. Taekwondo has been shown to increase strength and balance in typically developing (TD) individuals. A study was undertaken to determine whether Taekwondo training can improve lower body strength and balance of young adults with DS. Forty‐four adults with DS aged 21–30 years were assigned to either taekwondo classes 2 days/weeks for 10 weeks (n = 22) or a control group (n = 22). Measurements were taken prior to training, after 5 weeks and after 10 weeks of training, and after a 5 week detraining period. Strength was measured utilizing a hand‐held dynamometer. Balance tests utilized the modified Clinical Test for Sensory Integration and Balance (mCTSIB) with eyes open and closed, whereas dynamic balance was measured utilizing a limits of stability (LOS) test. A repeated measures MANOVA (significance level set at p < .05) was utilized to determine differences between groups over time for each of the three assessments. It was found that there was a significant mean increase in lower body strength after 5 weeks (pre: 142.1 lbs ± 52.4; 5 week: 197.7 lbs ± 71.2), and an additional increase after 10 weeks of training (10 week: 227.9 lbs ± 74.9). A decrease in strength was shown after detraining (188.5 lbs ± 63.7). Strength measures for the control group remained unchanged. There were no significant differences seen between groups in static or dynamic balance. The authors concluded that Taekwondo can be an effective method to increase strength of individuals with DS. Additional research is needed to determine if these strength changes lead to benefits related to physical function and independence.
    June 25, 2016   doi: 10.1111/jppi.12164   open full text
  • Teacher Identified Professional Learning Needs to Effectively Include a Child With Down Syndrome in Primary Mathematics.
    Rhonda Faragher, Barbara Clarke.
    Journal of Policy and Practice in Intellectual Disabilities. June 25, 2016
    The practices of effective primary school teachers including students with Down syndrome in their mathematics classes are largely unexplored and many teachers feel unprepared to teach students with an intellectual disability. The authors sought to find out what these specific professional learning (PL) needs were and if they changed over time. A mixed methods study was undertaken to investigate the practices of primary mathematics teachers including students with Down syndrome in regular class lessons in two Australia educational jurisdictions. A variety of approaches was used to gain an understanding of their practices. Findings are based on responses to a questionnaire administered to teaching teams at the beginning and end of the school year. There was a strong endorsement of inclusion as an appropriate practice in primary mathematics. The PL needs of teaching teams changed across the teaching year. Early requirements concerned understanding Down syndrome and its impact on learning and behavior. As the school year progressed, PL needs changed toward a greater focus on the need for specific resources and strategies for teaching mathematics. The PL requirements of teachers included the need for “in‐time” support. The authors conclude that even if it may be infrequent when a teacher has a student with Down syndrome in a mathematics class, teachers still need access to PL that evolves across the school year, from less focus on syndrome‐specific information to greater emphasis on teaching mathematics through adjusting learning outcomes and teaching approaches.
    June 25, 2016   doi: 10.1111/jppi.12159   open full text
  • Development of Self‐Help, Language, and Academic Skills in Persons With Down Syndrome.
    Gert de Graaf, Erik de Graaf.
    Journal of Policy and Practice in Intellectual Disabilities. June 25, 2016
    Using visual analysis by means of scatterplots, correlational analysis, and linear regressions, the authors explored the skills of individuals with Down syndrome in the areas of self‐help, language, academics, and computer skills. By combining data of several Dutch studies, they obtained 1,252 different observations made by parents on 862 individuals, aged <1–35 years. Research shows advancement in language skills up to the age of 12, with plateauing afterward. In contrast, self‐help skills still increase in adolescence and young adulthood. Academics and computer skills improve up to the age of 14. However, less developed academic skills (and computer skills) of adolescents and young adults appear to be a generational difference, rather than a loss of acquired skills. In their analysis, the authors differentiated between students with a primarily regular school career vs. those with a primarily special school career. In addition, in both groups, the studies were differentiated between students with an IQ >50 vs. an IQ between 35 and 50. The comparison between the various subgroups revealed that children with special education backgrounds in the higher IQ range demonstrated less advanced academic skills than children with regular education backgrounds in the lower IQ range. This suggests that regular education is more stimulating for academic skill development. Using age, “school career,” and IQ (<35; 35–50; 50–60; 60–70; >70) as predictors, regressions confirmed this conclusion. The authors conclude that their analyses show that the shift in the early 1990s in the Netherlands toward more inclusion in education for students with Down syndrome has led to better outcomes in academic skill development for these students.
    June 25, 2016   doi: 10.1111/jppi.12161   open full text
  • An Early Literacy Program for Young Children with Down Syndrome: Changes Observed over One Year.
    Paola Colozzo, Leah McKeil, Jill M. Petersen, Amanda Szabo.
    Journal of Policy and Practice in Intellectual Disabilities. June 25, 2016
    Although much individual variability exists, most persons with Down syndrome (DS) experience marked expressive language delays and challenges with speech production, hearing, and verbal memory that may negatively affect literacy development. There is, however, a paucity of research with respect to early intervention literacy programs with this population. The authors describe an early intervention literacy program that used a hybrid approach to reading instruction combining whole‐word (i.e., visual) and analytic (i.e., phonic or sound‐based) reading strategies. They also detail the changes observed in the literacy and language abilities of the participants over 1 year. The participants were 15 English speaking Canadian students with DS aged 3–6 years (M age 4;11, pretreatment) who took part in a 45‐week program. Weekly individual sessions with a certified teacher were augmented by regular homework. Each student's literacy and language abilities were assessed immediately pretreatment and posttreatment. Measures of letter name identification, letter sound identification, print concepts, and identification of taught sight words showed statistically significant changes. Letter name identification, letter sound identification, and number of sight words read pretreatment were all positively and significantly correlated with gains in word identification. There was also a clear difference regarding how many new sight words students were able to read posttreatment depending on whether they used abstract symbols to communicate (i.e., unprompted spoken words or signs) pretreatment. The authors note that this study provides support for literacy interventions that combine phonological awareness, word analysis, sight word training, and shared book reading with children with DS as young as 3 years of age with varying levels of language development.
    June 25, 2016   doi: 10.1111/jppi.12160   open full text
  • Understanding Maternal Support for Autonomy in Young Children with Down Syndrome.
    Linda Gilmore, Belinda Ryan, Monica Cuskelly, Susana Gavidia‐Payne.
    Journal of Policy and Practice in Intellectual Disabilities. June 25, 2016
    Prior research has highlighted the importance of supporting the autonomy of children with Down syndrome from early childhood. There is some evidence to suggest that mothers of children with Down syndrome are more directive than those whose children are developing typically. However, the factors that contribute to maternal autonomy supportive vs. directive behaviors are not well understood. The current study aimed to explore the value and importance that mothers place upon their child's autonomy, as well as the specific factors that influence the support they provide. Interviews were conducted with 14 mothers of young children with Down syndrome. It was revealed that mothers held aspirations for their children's future that included autonomy and independence; however, their capacity to promote autonomy was sometimes constrained by a range of child and family factors, as well as by their focus on developing skills for independent functioning. Understanding the factors that may constrain support for autonomy represents an essential step in the process of designing interventions for promoting maternal support for autonomy in families of children with Down syndrome and other developmental disabilities.
    June 25, 2016   doi: 10.1111/jppi.12163   open full text
  • Commentary.
    Roy I. Brown, Rhonda M. Faragher.
    Journal of Policy and Practice in Intellectual Disabilities. June 25, 2016
    There is no abstract available for this paper.
    June 25, 2016   doi: 10.1111/jppi.12165   open full text
  • Psychometric Properties of the Italian Adaptation of a Quality of Life Instrument as Applied to Adults With Intellectual and Developmental Disabilities.
    Marco O. Bertelli, Annamaria Bianco, Micaela Piva Merli, Daniela Scuticchio, Stefano Lassi, Lorenzo Lorenzoni, Dominga Carbone Viviani, Ivan Brown.
    Journal of Policy and Practice in Intellectual Disabilities. June 18, 2016
    In the field of intellectual disability (ID) generic quality of life (G‐QoL) has been reported to be much more useful than health‐related QoL. Despite this, Italian‐language tools with validated assessment of G‐QoL in people with ID are lacking. The authors undertook a study to test the psychometric properties of the BASIQ, an Italian adaptation of the Quality of Life Instrument Package developed at the Centre for Health Promotion, University of Toronto, Canada, in the early 1990s. This instrument package integrates qualitative and quantitative measures and subjective and objective approaches in assessing nine domains of QoL using a direct interview (DI), a proxy questionnaire (PQ), and an external assessor questionnaire (EAQ). Using BASIQ, the study assessed the QoL of a sample of 281 adults with ID (47 DI by 11 raters, 260 PQ by 23 proxies, and 69 EAQ by 5 physicians) drawn randomly from a three services populations in central Italy. The adults, 69% men and 31% women, ranged in age from 16 to 86 (X = 41.57); most (67.6%) functioned in the mild and moderate ranges of ID. QoL assessments were carried out in Italian, and were completed by specially trained disability professionals. The instrument had good internal consistency (Cronbach's alpha 0.990) and satisfactory inter‐rater reliability (Cohen's K > 0.7). For each of the DI and the PQ, all nine domains correlated positively (p < .05), and this was also the case for most domains of the EAQ. Post hoc analyses found no differences in QoL on any of the three scales for gender or co‐occurrence of mental or physical problems, but revealed some differences for level of disability. Overall, the authors present evidence for considering the BASIQ to be a valid instrument to assess QoL and put it forward as a useful tool to use in practice and policy development.
    June 18, 2016   doi: 10.1111/jppi.12158   open full text
  • Income Patterns of Households Including Individuals with Intellectual Disabilities According to Poverty Dynamics.
    Eun‐Young Park, Su‐Jung Nam, Seung Hee Park.
    Journal of Policy and Practice in Intellectual Disabilities. June 18, 2016
    The purpose of this longitudinal study was to closely examine the economic status of households that include individuals with intellectual disabilities in South Korea as well as the factors contributing to their poverty dynamics. The 2008 and 2012 panel data from the Korea Employment Agency for the Disabled were used to determine the income movement, poverty dynamics, and income patterns of families in the sustained nonpoverty and sustained poverty groups. Data from 87 households that include individuals with intellectual disabilities was used for analysis. Income mobility was assessed using a transition matrix between 2008 and 2012, and poverty and nonpoverty were determined based on the absolute poverty standard. Poverty dynamics were classified by the changes in poverty status in 2008 and 2012, including sustained poverty, sustained nonpoverty, poverty exit, and poverty entry. Income patterns were composed of earned income, social insurance, property income, and transfer income. The results showed that 66.7% of the households including individuals with intellectual disabilities showed no movement in income distribution and 82.8% of these families stayed in the lowest income distribution for both periods. The demographic characteristics of education level, multiple disabilities, and change in the number of employed members of the household were related to poverty dynamics. The ratio of earned income in the sustained nonpoverty group was significantly higher than that of the sustained poverty group, whereas the public transfer income ratio was significantly higher than in the sustained‐poverty group in 2008 and 2012. To reduce the prevalence and severity of poverty among households with individuals with intellectual disabilities, opportunities and quality of employment need to be secured, not only for individuals with intellectual disabilities, but also for their supporting family members.
    June 18, 2016   doi: 10.1111/jppi.12166   open full text
  • Post‐School Destination—A Study of Women and Men With Intellectual Disability and the Gender‐Segregated Swedish Labor Market.
    Jessica Arvidsson, Stephen Widén, Carin Staland‐Nyman, Magnus Tideman.
    Journal of Policy and Practice in Intellectual Disabilities. May 20, 2016
    Knowledge about people with intellectual disability (ID) and their connections to the labor market is scarce. The aim of this study was to describe and analyze the entry into and representation in the Swedish labor market for people with ID, discussed with a special focus on the gender perspective. This study included 2,745 individuals (30% women and 70% men) who graduated from Swedish upper secondary schools for pupils with intellectual disability (USSID) in the 2000s, and who were defined as employees in 2011. Graduation data from 2001 to 2011 were analyzed in relation to employment data from 2011 and adjusted for gender, graduation year, and educational program. Results show that men who attended a national USSID program and graduated between 2001 and 2006 were the most likely group to have a job. The authors conclude that the gender differences in the Swedish labor market are more clearly pronounced among women and men with ID in relation to employment rate, wage levels, and professions than in the general population. Education, welfare‐services, and interventions specifically targeted to meet the needs of people with ID have to develop in more gender‐sensitive ways.
    May 20, 2016   doi: 10.1111/jppi.12157   open full text
  • Reliability and Validity of Physical Fitness Field‐Based Tests in Down Syndrome: A Systematic Review.
    Carlos Ayán Pérez, Iván Martínez‐Lemos, Joaquín Lago‐Ballesteros, José Ma Cancela Carral, Nerea Loira‐Camiña.
    Journal of Policy and Practice in Intellectual Disabilities. May 11, 2016
    Physical fitness is an important marker of health that can be measured by means of field‐based tests, though research about its psychometric properties when performed by people with Down syndrome is scarce. A systematic review was designed to identify the validity and reliability of the existing physical fitness field‐based tests that have been administered to individuals with Down syndrome. An evidence‐based search for peer‐reviewed studies was conducted informing about the reliability and/or validity of physical fitness field‐based tests that have been administered to individuals with Down syndrome utilizing the PubMed, PEDro, SPORTDiscus, and Scopus databases throughout the period November 2014 to May 2015. Of the 15 studies selected, all provided information about reliability, but only seven included validity measurement for the field tests chosen to assess physical fitness in Down syndrome cohorts. Aerobic resistance field test assessments were the most frequent, totalling 7 studies, while 5 investigations used strength tests instead and 3 of them used balance tests. Only one study used agility as a parameter. There was a noticeable lack of studies that analyzed the reliability or validity of physical fitness field‐based tests in people with Down syndrome, especially in adult and elderly populations. The half‐mile run‐walk, hand‐held dynamometer, and the four square balance tests seem to be the most valid field‐based tests when assessing aerobic endurance, muscular strength, and balance respectively in groups of persons with Down syndrome.
    May 11, 2016   doi: 10.1111/jppi.12155   open full text
  • Psychiatric Conditions Prevalent Among Adults With Down Syndrome.
    Marc J. Tassé, Patricia Navas Macho, Susan M. Havercamp, Betsey A. Benson, Dawn C. Allain, Kandamurugu Manickam, Suzanne Davis.
    Journal of Policy and Practice in Intellectual Disabilities. May 11, 2016
    The authors assessed available prevalence information regarding neuropsychiatric conditions among adults with Down syndrome (DS) and compared these findings among adults with other intellectual disability (non‐DS). The study entailed a survey of 291 adults with DS living in Ohio (USA). Twenty‐three percent of adults with DS reported having a co‐occurring psychiatric disorder, a smaller than the reported occurrence of such conditions in the general adult intellectual disability population. Depression, anxiety disorders, and dementia or Alzheimer's disease were the most frequently reported neuropsychiatric disorders by adults with DS. The likelihood of experiencing a psychiatric disorder increased with age but did not vary by sex among adults with DS. Lower rates of problem behavior were reported in adults with DS compared to adults with intellectual disability (non‐DS). The authors' findings indicate that adults with DS may present different rates and types of co‐occurring psychiatric disorders than the larger population of adults with other intellectual disability. These findings warrant additional research and could provide critical information for planning and intervention.
    May 11, 2016   doi: 10.1111/jppi.12156   open full text
  • Family Caregiving of Aging Adults With Down Syndrome.
    Robert M. Hodapp, Meghan M. Burke, Crystal I. Finley, Richard C. Urbano.
    Journal of Policy and Practice in Intellectual Disabilities. April 21, 2016
    Although persons with Down syndrome now live to approximately 60 years, the implications of increased longevity on family caregiving have received inadequate attention. Even compared with adults with other types of intellectual disabilities, by their late 40s and 50s adults with Down syndrome often show multiple health problems, cognitive‐adaptive declines, and changes in daily work and activities. If alive, their parents are more often elderly, as mothers give birth to newborns with Down syndrome at a median age of 32 years (with high percentages age 40 and older). In addition, higher percentages of adults with (vs. without) Down syndrome live in their family homes and greater percentages may ultimately reside with siblings. Compared with caring for other adults with intellectual disabilities, aging adults with Down syndrome may present earlier—and possibly more severe and more health‐related—caregiving challenges to their parents and siblings. As a field and as a society, the authors note that we need to promote revisions of family support policies and interventions; recognize the inter‐relations of aging‐related changes and their effects; and anticipate how aging‐related changes in the brother–sister with Down syndrome and the parent(s) might affect sibling caregivers.
    April 21, 2016   doi: 10.1111/jppi.12153   open full text
  • Role of Anxiety as a Trait and State in Youth With Mild Intellectual Disability: Coping With Difficult Situations.
    Paweł Kurtek.
    Journal of Policy and Practice in Intellectual Disabilities. April 21, 2016
    Although social integration of youths with intellectual disabilities improves their psychological adaptation, it nevertheless exposes them to a higher risk of stress. The author's goal was to verify the regulatory role of anxiety, respectively, as a trait and as a state in youth with mild intellectual disability who are coping with difficult situations. The study, involving a group of 120 students at the Education and Rearing Center in Kielce (Poland), used two psychological methods pertaining to a cognitive paradigm. The first was the State‐Trait Anxiety Inventory (ISCL—Polish version of STAI) and the other was the self‐description technique of the authorship “That's Life,” devised with the aim of revealing either task strategies or emotional and avoidant strategies adopted by the respondents. The tools are matched to specific cognitive abilities and social experiences typical of youth with mild intellectual disability. Correlative research model was applied. The results of linear regression and variance analyses showed the regulatory role of the state anxiety for youth with mild intellectual disability with reference to coping strategies. A higher intensity of anxiety stimulated their defensive activity, especially in the context of ambivalent conflicts, whereas a decrease in state anxiety led to their employing task‐focused strategies. The results should encourage the development and application of anxiety‐reducing techniques based on cognitive confrontation to activate task‐oriented coping.
    April 21, 2016   doi: 10.1111/jppi.12150   open full text
  • Trajectories of Development of Receptive Vocabulary in Individuals with Down Syndrome.
    Monica Cuskelly, Jenny Povey, Anne Jobling.
    Journal of Policy and Practice in Intellectual Disabilities. April 21, 2016
    Receptive vocabulary is an important aspect of cognitive functioning. It appears to be a relative strength with respect to language for individuals with Down syndrome (DS) but little is known about its development as individuals mature. This study was designed to establish the developmental trajectory of receptive language development in individuals with DS from early childhood to midadulthood. Two hundred and six individuals with DS provided Peabody Picture Vocabulary Test (PPVT) scores on 957 occasions, spanning ages from 2 years 7 months to 29 years 7 months. Latent growth curve models were used to establish the trajectory of receptive vocabulary. Gender, maternal education, cohort, and nonverbal intellectual ability were used as predictors of rate of development. Receptive vocabulary was found to increase until around 20 years of age when performance on the PPVT began to deteriorate. The only variable measured that was associated with PPVT performance was nonverbal ability. The rate of increase in receptive vocabulary in individuals with DS across the childhood and adolescent period appears to be slower than for those who are developing typically, and the expected influence of maternal education was not found. The small number of participants contributing data in the older ages included in this study means that the apparent decline in receptive vocabulary scores needs to be interpreted cautiously.
    April 21, 2016   doi: 10.1111/jppi.12151   open full text
  • Monosynaptic Reflexes and Preprogrammed Reactions in Down Syndrome: A Surface Electromyographic Study.
    Chiara Rigoldi, Manuela Galli, Sara Laura Vimercati, Claudia Condoluci, Giulia Tacchino, Anna Maria Bianchi, Giorgio Albertini.
    Journal of Policy and Practice in Intellectual Disabilities. April 13, 2016
    The development of motor control in people affected by motor and cognitive pathologies leads to different behaviors in approaching everyday life activities. Understanding the origin of the differences in motor control between people with Down syndrome and those typically developing is very important for the definition of early and late intervention in rehabilitation. The aim of this study was to explore the stretch reflex and preprogrammed reactions as the origin of motor control development in a population of participants with Down syndrome. Eight subjects with Down syndrome (5 males, 3 females; mean age 23.11 ± 8.96) and 21 typically developing persons (7 males, 14 females; mean age 28.95 ± 9.56) were evaluated. The participants were seated on a chair with their dominant arm flexed at approximately 90°. Holding the handle of a bucket in his/her dominant hand, the participant was told to maintain the position after an unexpected load perturbation, produced by throwing a weight inside the bucket. The evaluation of primitive mechanisms of motor control revealed that no basic abnormality was present in the early motor control mechanisms of subjects with Down syndrome. The results provide evidence to the hypothesis that peripheral control in Down syndrome is comparable to that of typically developing persons, permitting the development of motor control throughout their sensorial exploration of the external world. However, the difference in central nervous system structure between people with Down syndrome and controls could probably produce different shaping of the higher elaboration centers causing a delayed or a different neuromotor response.
    April 13, 2016   doi: 10.1111/jppi.12152   open full text
  • Improving Practices of Risk Assessment and Intervention Planning for Persons with Intellectual Disabilities Who Sexually Offend.
    Jason Keller.
    Journal of Policy and Practice in Intellectual Disabilities. March 28, 2016
    Proactive assessment and intervention planning should be undertaken in cases of sexual behavior by persons with intellectual disability (ID) that is outside of acceptable norms. Although best practices in risk assessment for the general offender population are somewhat established, sexually inappropriate behavior among individuals with ID is distinct. Research in effective specialized risk assessment and intervention planning for this client group is an emerging area of focus. This article reviews contemporary academic research on this subject and highlights opportunities for improvement. First, research on risk factors for this client group was reviewed, observing the differences between empirically validated common factors and factors that are specific to the individual. Second, existing actuarial and structured clinical judgment approaches were evaluated. Third, the person‐centered planning approach to service planning for persons with ID was examined, highlighting how the principles of this approach may be used to enhance current practices in risk assessment and intervention planning. The author concludes that effective collaboration between support teams and clinical professionals, with focus maximized on individual risk factors and strengths, should lead to improved outcomes of risk assessment and intervention planning for persons with ID whose sexual behavior is inappropriate. A call to action is presented for the development of an enhanced, fourth‐generation, approach that embodies a collaborative framework.
    March 28, 2016   doi: 10.1111/jppi.12149   open full text
  • GPS Devices for Elopement of People With Autism and Other Developmental Disabilities: A Review of the Published Literature.
    Brent Hayward, Fiona Ransley, Rhiannon Memery.
    Journal of Policy and Practice in Intellectual Disabilities. March 28, 2016
    Elopement, sometimes referred to as absconding, is defined as leaving an area without supervision or carer permission. Global positioning systems (GPS) have been proposed as an intervention for elopement to provide the geographical position of a person who has eloped so that he/she can be located. The authors reviewed the evidence for the use of GPS as an intervention for elopement in people with autism and other developmental disabilities. They found few studies that explored the practicalities of GPS device use among carers of persons with developmental disabilities (most studies have been with carers of people with dementia) and even less research that focused on the testing of the functionality of GPS devices to locate cognitively‐impaired persons. They conclude that this forces the existing empirical research to be sidelined in favor of non‐evidence‐based situational management strategies, of which the use of GPS devices is potentially a viable one. They also note that the results have important implications for policy and practice as there is little evidence to support the widespread recommendation that GPS devices are an effective intervention to prevent risk associated with elopement.
    March 28, 2016   doi: 10.1111/jppi.12148   open full text
  • The Role of Sound in Residential Facilities for People With Profound Intellectual and Multiple Disabilities.
    Kirsten A. van den Bosch, Tjeerd C. Andringa, Deniz Başkent, Carla Vlaskamp.
    Journal of Policy and Practice in Intellectual Disabilities. March 28, 2016
    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 theoretical framework regarding the role of sound in homes for people with PIMD. The framework was formulated using techniques from soundscape and emotion research and resulted in a taxonomy of auditory environments, or soundscapes, including an important role for audible safety. A convenience sample of 34 healthcare professionals from various organizational layers volunteered to participate in a focus group study. During this expert meeting their latent knowledge was examined to see if it corresponded to the proposed theoretical framework. The answers given by the participants were grouped in five categories, Influencing behavior, Atmosphere, Clarity, Structure, Safety, and Recognition, showing a strong consistency between the knowledge and experience of the professionals and the theoretical framework. Results suggest the participants working on a strategic level have a less comprehensive understanding of the role of sound in the daily care. The authors’ recommended the increase of awareness amongst the staff of organizations caring for people with PIMD of the role of sound in the environment so as to enhance psychological well‐being and quality of life and thus reduce the prevalence of behavioral problems.
    March 28, 2016   doi: 10.1111/jppi.12147   open full text
  • Sweden's LSS and Social Integration: An Exploration of the Relationship between Personal Assistant Type, Activities, and Participation for Children with PIMD.
    Taylor Boren, Mats Granlund, Jenny Wilder, Anna Karin Axelsson.
    Journal of Policy and Practice in Intellectual Disabilities. March 28, 2016
    The Swedish personal assistance system, facilitated through Swedish legislation (known as the LSS), allows children with profound intellectual and multiple disabilities (PIMD) to receive subsidized personal assistance. This assistance may be either a hired professional from outside the family or a parent paid as a personal assistant. The type of personal assistant can impact activity selection. As noted by bio‐ecological systems theory, participation in “systems” beyond the household is important for a child's cognitive and social development, including the development of children with disabilities. The authors explored whether children's personal assistant type (i.e., external or parental) is related to their presence in socially integrative activities (SIAs) versus non‐socially integrative activities (NSIAs). The relationship between children's activity engagement and their personal assistant type was examined via a descriptive, comparative study based on a questionnaire. Sixty families answered, providing quantitative data about personal assistance type across 56 common family activities. Children's external assistants showed a greater presence in SIAs than children's parental assistants, who showed a greater presence in NSIAs. The level of activity engagement between personal assistant type, however, had a less direct relationship. In accordance with bio‐ecological systems theory, activity selection can influence the child's cognitive and social development. Ultimately, this study suggests that external assistants partake in more SIAs than parental assistants, likely as a function of providing respite for families. This respite stems from the LSS's implicit role for external personal assistants to also serve as relief for parents. In turn, by facilitating exposure to broader systems, these external assistants can play a critical role in children's social and cognitive development.
    March 28, 2016   doi: 10.1111/jppi.12146   open full text
  • Direct Support Professionals and Reversed Integration of People With Intellectual Disabilities: Impact of Attitudes, Perceived Social Norms, and Meta‐Evaluations.
    Eleonora Venema, Sabine Otten, Carla Vlaskamp.
    Journal of Policy and Practice in Intellectual Disabilities. March 28, 2016
    Direct support professionals (DSPs) play an important role in the process of integration of people with intellectual disabilities. Nevertheless, little is currently known about what determines the level of effort exerted by DSPs to enable the social integration of their clients. The aim of this study was to investigate three different psychological determinants (attitudes, social norms, and meta‐evaluations) of the behavioral intentions of DSPs to facilitate the social integration of their clients. Semistructured interviews were conducted with 28 DSPs working in a setting of “reversed integration,” as well as 25 family members and 25 neighbors. The DSPs’ perceived social norms and meta‐evaluations of neighbors and family members were compared with their actual social norms and evaluations. The authors found that half of the DSPs interviewed were positive about integration, whereas the other half were negative or neutral. Concerning social norms, the DSPs expect neighbors to have neutral attitudes toward the integration of people with intellectual disabilities, while in reality the neighbors are very positive. More than half of the DSPs were uncertain about the family members’ opinions about integration. Asking the family members themselves, there was some variation in their attitudes toward integration. Regarding the meta‐evaluation, DSPs had a realistic idea about how their work would be evaluated by family members and neighbors; both groups were positive. It is evident that this group of DSPs had an overly negative idea of neighbors’ opinions about integration and contact with people with intellectual disabilities. Creating awareness of a supportive social norm in the neighborhood could help and encourage DSPs to strive for social contact between their clients and neighbors.
    March 28, 2016   doi: 10.1111/jppi.12145   open full text
  • Effects of Vocational Training on a Group of People with Intellectual Disabilities.
    Maria Luiza Gomes‐Machado, Flavia Heloisa Santos, Teresa Schoen, Brasilia Chiari.
    Journal of Policy and Practice in Intellectual Disabilities. March 28, 2016
    Intellectual disability (ID) is the most restraining disability for professional inclusion, mainly due to the lack of adaptive skills focused on the work environment observed in people with ID. The aims of this study were (i) to describe and analyze the effects of a vocational training program on the adaptive behavior of people with ID and (ii) to evaluate the social impact of employability on the life of the employees with ID. Participants were 43 people with mild or moderate ID, age between 18 and 28 years. The Supports Intensity Scale was applied at two stages: T1‐PRETRAINING and T2‐POSTTRAINING, while the Social Impact Questionnaire was used at the third stage, after employment (T3 POSTINCLUSION). The authors found that there were differences in total scores between stages T1 and T2 in relation to all the adaptive skills assessed, with a reduction of around 50% in the need for support. One year after inclusion in the labor market (T3), participants were still employed, with significant improvements in such aspects as learning, autonomy, affective and social development, as well as in family and community relations. The vocational training contributed to the global development of persons, favoring their professional inclusion, and as a result, sustenance, autonomy, and a decrease in the need for assistance and support.
    March 28, 2016   doi: 10.1111/jppi.12144   open full text
  • Family Support in Kinshasa, Democratic Republic of the Congo.
    Heather M. Aldersey, Ann P. Turnbull, H. R. Turnbull.
    Journal of Policy and Practice in Intellectual Disabilities. March 28, 2016
    Family support consists of formal (i.e., provided by professionals) and informal (i.e., provided by family and friends) assistance that responds to families’ emotional, physical, material/instrumental, and informational needs and is intended to enhance the quality of life of the family member with a disability and the family unit. The authors used a case study approach to examine a voluntary self‐help association to answer the questions: (1) what aspects of local self‐help entity provide effective and meaningful support to families who have a member with intellectual and developmental disability? and (2) what makes this support effective and meaningful? This study entailed a secondary analysis of data (interviews, observations, documents) collected over a 7‐month period in Kinshasa, DRC, to describe and examine a DRC‐based local voluntary self‐help association for family members of people with intellectual and/or developmental disabilities. The self‐help association examined provides emotional, physical, material/instrumental, and informational support to local families. Key reasons for the association's success include that it is grounded in local realities and led by charismatic, multidisciplinary, committed leaders. Key challenges of the association relate to a lack of sustainable funding and limited scope of impact outside of Kinshasa. The authors conclude that families themselves are often the first creators and providers of family support in conflict and postconflict contexts, where state priorities for family support of carers of persons with disabilities are often low or nonexistent. This case provides empirical evidence that families are currently self‐organizing to meet disability support needs in Kinshasa. As developing nations such as the DRC begin to structure more formal state programs for family support, they would be wise to partner with or formally engage existing experienced family associations to provide meaningful and effective disability‐related support.
    March 28, 2016   doi: 10.1111/jppi.12143   open full text
  • Utility of a Modified Online Delphi Method to Define Workforce Competencies: Lessons from the Intellectual Disability Mental Health Core Competencies Project.
    Janelle Weise, Karen R. Fisher, Julian Trollor.
    Journal of Policy and Practice in Intellectual Disabilities. March 28, 2016
    The Delphi method has been previously used to define and reach consensus on core workforce attributes. However, limitations of the traditional Delphi method have been identified. A modified online Delphi method, which aims to address these limitations, was used as one part of the intellectual disability mental health core competencies project. The authors assess the utility of a modified online Delphi method to define and reach consensus on the core intellectual disability mental health workforce attributes and the lessons learned from using this approach. Thirty‐six intellectual disability mental health experts from across Australia participated in a modified online Delphi. At the end of each Delphi round the research team completed descriptive analyses for the quantitative data, and content and thematic analyses for the qualitative data. The research team subsequently critiqued the method in terms of its utility in defining workforce attributes. Authors identified several lessons from using this method to define core workforce attributes. In particular, it has highlighted the potential benefit of initiating the Delphi process with a developed framework that is familiar to the workforce; the benefit of using quantitative and qualitative methods; and the need to reconsider how to define participant consensus. This study confirmed the utility of a modified online Delphi method to identify and describe core workforce attributes, provided insights into the benefits and challenges of this method, and identified strategies for overcoming some of the commonly documented limitations of the Delphi method. However, it has also highlighted some additional challenges of the Delphi method that researchers have not commonly described within the published literature. The lessons provide useful insights for others planning to use the Delphi method.
    March 28, 2016   doi: 10.1111/jppi.12142   open full text
  • Experiences of Mothers in Romania after Hearing from Medical Professionals That Their Child Has a Disability.
    Triona Collins, Barry Coughlan.
    Journal of Policy and Practice in Intellectual Disabilities. March 28, 2016
    To help maintain the right of children with an intellectual disability to grow up in their family home, this study explored Romanian mothers’ experiences of overcoming the many challenges to the provision of care to assure a high quality of life for their child. Studied were mothers’ experiences upon being told by a professional that their child had a disability and of their experiences of caring for their children at home in the context of Romanian disability legislation and contact with local Disability Commissions. The data, obtained via an exploratory qualitative study, were based upon eight interviews with mothers of children with disabilities carried out with the assistance of a bilingual interpreter. Interviews were transcribed and analyzed using Interpretative Phenomenological Analysis. Two themes of “uncertainty” and “disempowering bureaucracy” were parsed from mothers’ various experiences. Due to various sociocultural barriers and unclear communication, mothers experienced uncertainty surrounding the diagnosis of their child's condition. In light of this uncertainty and the ambivalent attitudes of professionals, mothers experienced disempowering bureaucracy while striving to meet the annual requirements of their local Disability Commission. The study revealed gaps in the disclosure process of an intellectual disability that lead to uncertainty among the mothers toward professionals. The disempowering bureaucracy connected to the local Disability Commission impeded mothers access to community support and contributed toward a lack of understanding of the needs of their child.
    March 28, 2016   doi: 10.1111/jppi.12141   open full text
  • Challenges in Implementing Inclusive Education in Ireland: Principal's Views of the Reasons Students Aged 12+ Are Seeking Enrollment to Special Schools.
    Aine Kelly, Catherine Devitt, Donal O'Keeffe, Anne Marie Donovan.
    Journal of Policy and Practice in Intellectual Disabilities. March 05, 2014
    In Ireland, an increasing number of students with special educational needs are leaving mainstream schools and enrolling in special education schools. A comparable context is countries that share an inclusion ideology and are at the implementation stage of inclusive education. The authors sought to investigate the reasons why students aged 12+ are leaving mainstream education and transferring to special schools, and to identify what burden this places on the special schools. Data were obtained from questionnaires sent to 54 special school principals. These administrators reported on their experiences with 246 transfer students. Descriptive analysis, Kruskal–Wallis, Mann–Whitney U, and exact tests of significance were conducted between school groups and level of agreement with perceived difficulties. The principals reported an increasing trend (40% over 5 years) in students enrolling in special schools. The main reason given for the students leaving mainstream schools was the failure of mainstream schools to meet their academic, social, emotional, behavioral, and access‐to‐health resource needs. Adjustment and integration problems resulted from a lack of transition planning, entering too late into the special school curriculum, and an over‐dependency on supports. Students were reported to display a lack of self‐confidence, classroom disengagement, peer interaction difficulties, and challenging behavior, and these dysfunctions were attributed to the mismatch between the students' educational and other special needs and the educational environments.
    March 05, 2014   doi: 10.1111/jppi.12073   open full text
  • Targeting Health Improvement via a Nutritional Intervention Program for Adults With Developmental Disabilities and Challenging Behaviors.
    Meaghan Edwards, Michael Holder, Nehama Baum, Roy Brown.
    Journal of Policy and Practice in Intellectual Disabilities. March 05, 2014
    Research suggests that individuals with developmental disabilities and challenging behaviors resulting from complex impairments tend to experience poor health status linked to lifestyle factors (including inadequate diet and poor nutrition). Individuals living in group home settings seem to be especially vulnerable, as they may often be provided with meals that may not be nutritionally adequate. This article describes how the need for a nutritional intervention program for group home staff was determined, the nature of the program itself, and the impact of the program upon meal composition and on staff and residents. Subjects were supervisors and group home staff members responsible for providing meals in four group homes to 21 residents. The program consisted of two training sessions for staff and follow‐up monitoring through daily photographing of meals, weekly communications with staff, and monthly measuring of the body mass of group home residents. The program was assessed through a time series evaluation of photograph ratings measuring meal composition. Results indicated that meal nutrition and composition improved significantly over the duration of the nutrition intervention program. The authors conclude that a meal enhancement model may be effective in improving meal nutritional compositions in group home and other community‐based settings, thus providing opportunities for improved health status.
    March 05, 2014   doi: 10.1111/jppi.12067   open full text
  • Attention Deficit Hyperactivity Disorders Symptomatology Among Individuals With Down Syndrome.
    Simon Edvardson, Nadira Msallam, Pnina Hertz, Sarah Malkiel, Isaiah D. Wexler, Ariel Tenenbaum.
    Journal of Policy and Practice in Intellectual Disabilities. March 05, 2014
    The prevalence of attention deficit hyperactivity disorders (ADHD) among individuals with Down syndrome (DS) has been difficult to ascertain. This is because many of the phenotypic features of DS may resemble the clinical manifestations of DS and the myriad methodological challenges in diagnosing ADHD in children with intellectual disabilities (ID). With this in mind, the authors set to determine the prevalence of ADHD symptomatology in a cohort of children and young adults in a DS clinic. Subjects were 83 children and adults, ages 5–38, who were attending the Down Syndrome Center at the Hadassah Mount Scopus University Medical Center. All were screened for ADHD. Screening methods included review of medical files, telephone interviews, and use of the ADHD module of the Autism‐Tics, Attention‐Deficit/Hyperactivity disorder, and other Comorbidities questionnaire. It was found that 26 (31.3%) of the subjects fulfilled the Diagnostic and Statistical Manual of Mental Disorders (4th ed., text rev.) criteria for ADHD. Of these, 17 (65.4%) were diagnosed as predominantly inattentive type. Four (15.4%) were predominantly impulsive‐hyperactive, and five (19.2%) had the combined type. No statistically significant association was found between ADHD and age, sex, number of siblings, presence of heart disease, thyroid dysfunction, sleep disorders, or a family history of ADHD. The prevalence of ADHD symptomatology among individuals with DS in this representative sample is high compared with the general population. ADHD may be underdiagnosed in this special population, hence the need for systematic screening.
    March 05, 2014   doi: 10.1111/jppi.12069   open full text
  • Behavior Phenotype: A Synthesis of Research to Understand Age‐Related Change in Behavior in Several Syndromes.
    Donna Couzens.
    Journal of Policy and Practice in Intellectual Disabilities. March 05, 2014
    Knowledge of behavior change with age can inform our understanding of maturation and contextual influences on functions and precursors of behavior and optimal timing of supports. The author reviewed current information on age‐related change in problem behaviors related to etiology of intellectual disability and synthesized behavioral research using select domains of the Aberrant Behavior Checklist (hyperactivity/noncompliance, lethargy/social withdrawal, irritability/agitation, and stereotypic behavior). Syntheses of available data demonstrated an absence of problem behavior for many individuals with Down syndrome and normative behaviors in all domains (except irritability/agitation) for individuals with Prader–Willi syndrome and (except for hyperactivity/noncompliance) for those with fragile X and Angelman syndromes. Significant behavior problems across all domains were evident for individuals with Smith–Magenis syndrome and autism spectrum disorder. The author identified problems with available data and concluded that web‐based technologies offer an avenue for collaborative and sustainable longitudinal research. Such technologies may engage individuals and their communities in participatory research and enrich the information available for these groups.
    March 05, 2014   doi: 10.1111/jppi.12066   open full text
  • A Call for the Integration of Trauma‐Informed Care Among Intellectual and Developmental Disability Organizations.
    John M. Keesler.
    Journal of Policy and Practice in Intellectual Disabilities. March 05, 2014
    Research exploring the occurrence of trauma among adults with intellectual and developmental disabilities (I/DD) has grown over the past decade. Yet there is a dearth of literature investigating the impact of organizational factors on the trauma experience despite this population's need for organizational supports. Trauma‐informed care (TIC), a systems‐focused model for service delivery, is a fast‐developing interest among the broader field of trauma in the general population. It recognizes the prevalence and impact of trauma, and creates a culture of safety, trustworthiness, choice, collaboration, and empowerment. The author synthesized relevant literature from both the intellectual and developmental disabilities areas and integrated this with TIC and trauma literature drawn from the general population. Explored are the implications of organizations for service delivery and the potential assimilation of TIC within I/DD organizations. The effectiveness of TIC applications and their potential barriers are discussed and related to the philosophy of quality of life and organizational culture. The author notes that some individuals with I/DD comprise a vulnerable subgroup of the population that in large part relies upon the support of organizational services to foster quality of life. Given the implications of the focus on quality of life, he posits that TIC presents as a viable response for organizations, complimenting and augmenting current efforts.
    March 05, 2014   doi: 10.1111/jppi.12071   open full text
  • Medication Management in Belgian Residential Care Facilities for Individuals With Intellectual Disability: An Observational Study.
    Elke Joos, Els Mehuys, Jan Van Bocxlaer, Jean Paul Remon, Myriam Van Winckel, Koen Boussery.
    Journal of Policy and Practice in Intellectual Disabilities. March 05, 2014
    Organizational aspects of the medication management process (MMP) have been investigated in hospital and nursing home settings. However, the amount of literature on medication management in residential care facilities (RCF) for individuals with ID is limited to two studies from the Netherlands, focusing only on drug administration errors. To assess the organization of the MMP in Belgian RCFs for people with ID, the authors undertook a cross‐sectional observational study in 34 Belgian RCFs for people with ID. Structured interviews were performed using a questionnaire: the first part (for the RCF directors) addressed administrative and policy issues. The second (for unit employees) and third parts (for medical office employees) addressed practical aspects of the MMP. The fourth part (for physicians) focused on the physician's role in the MMP, on the therapeutic drug formulary, and on communication with staff and delivering pharmacist. Standard operating procedures concerning the MMP were not available in 32% of the RCFs. About one‐quarter of the RCFs did not have a medication error reporting system, and most RCFs did not systematically (i.e., at least annually) review their MMP for failures. Only two participating RCFs were equipped with an electronic prescribing system. The role of the pharmacist was mainly limited to delivery of medication. Medication was mostly administered by nonmedically qualified staff (e.g., educators). Most frequently cited problems by the interviewees were problems in the medication preparation and administration stage. Most frequently cited possible improvement actions were education/sensitization of staff and improved communication among all stakeholders. The authors note that as this study revealed operational inadequacies, problem areas can be identified and targeted quality improvement actions can be undertaken.
    March 05, 2014   doi: 10.1111/jppi.12064   open full text
  • System‐Wide Information About Family Carers of Adults With Intellectual/Developmental Disabilities—A Scoping Review of the Literature.
    Yona Lunsky, Ami Tint, Suzanne Robinson, Marcia Gordeyko, Hélène Ouellette‐Kuntz.
    Journal of Policy and Practice in Intellectual Disabilities. March 05, 2014
    Family carers play an important role supporting individuals with intellectual and developmental disabilities (I/DD) into adulthood. Funders of services often desire this ongoing involvement by family members yet they rarely collect data about family carers. As policy makers and planners are increasingly recognizing the need for information related to indicators of system performance, a scoping review was conducted to identify system‐wide information needed about family carers of adults with I/DD that would help improve the quality of service provided. A final review of 87 research articles was organized in terms of service use, service need, and permanency planning by family carers of adults with I/DD. Service use and need were associated with the presence of challenging behaviors among individuals with I/DD as well as carer demographics and health status. In addition, carers' subjective view of how well they think they can provide for their child in the future was an important determining factor of service need. Permanency planning was associated with child level of functioning as well as parent income, social support, and compound caregiving demands. Studies highlighted the importance of measuring family carers' mental and physical health and their perceptions of the adequacy of services received. Considered also were methodological limitations, highlighting considerations for future system monitoring. Methodological limitations of studies reviewed include reliance on cross‐sectional data, samples consisting of families already receiving at least some services, and little information about the process of seeking and obtaining services. Areas to target in future system monitoring include information on who needs services, what services are needed, families' perceptions of the caregiving experience and families' experiences waiting for services over time. Understanding the experiences of family carers as seekers of formal services can help inform policy and practice.
    March 05, 2014   doi: 10.1111/jppi.12068   open full text
  • Successes and Challenges in the Implementation of Care Pathways in an Intellectual Disability Service: Health Professionals' Experiences.
    Susan Wood, Satheesh Gangadharan, Freya Tyrer, Rohit Gumber, John Devapriam, Avinash Hiremath, Sabyasachi Bhaumik.
    Journal of Policy and Practice in Intellectual Disabilities. March 05, 2014
    Healthcare pathways are a relatively new approach to delivering care in intellectual disability services. The authors endeavored to ascertain and explore successes and challenges in the implementation of care pathways in a National Health Service adult intellectual disability service in Leicestershire, UK. Data were obtained from a variety of sources including observations of multidisciplinary team meetings, issue logs, and feedback from health professionals. Constant comparative analysis identified 10 themes: communication between health professionals; clarity and dissemination of relevant documentation; multidisciplinary working; role of health professionals; role of administrative staff; locality differences; information technology systems; care pathway procedures; attitudes toward care pathways; and impact on clients. It was found that a new implementation of care pathways approach to service delivery in the healthcare setting can be challenging for health professionals. Some of the challenges were generic to service change and could be addressed through careful and organized preplanning of the implementation process. Others, such as organizational culture and attitudes within the organization, were contextual and may be unique to each service and warrant significant advance consideration when attempting implementation.
    March 05, 2014   doi: 10.1111/jppi.12063   open full text
  • IASSIDD: Are We Practicing Knowledge Translation Effectively?
    Vianne Timmons.
    Journal of Policy and Practice in Intellectual Disabilities. June 19, 2013
    The International Association for the Study of Intellectual and Developmental Disabilities (IASSIDD) was established in the early 1960s with the mission of advancing research in the field of intellectual disabilities. This article explores the history and impact of IASSIDD. In particular, it focuses on IASSIDD's role in the area of knowledge translation and promoting research to practice. The history of IASSIDD is documented. Its evolution is analyzed in the context of social, political, and scientific developments across the globe over the past 40 years. There has been an increased focus on evidence‐based decision making and improving practice through research. There is evidence of a shifting emphasis from a primarily medicalized understanding of people with disability and their needs, to a focus that now includes the social, cultural, and economic needs of people with disability and their families. Greater attention is being paid to the construction of policy and service systems that are person‐centered in their orientation, taking into account the priorities and aspirations of individuals, and emphasizing concepts such as inclusion, choice, and self‐determination. Consistent with this, there is growing emphasis on inclusive research processes that value the cocreation of knowledge in partnership with people with disability and their families. IASSIDD and our disability research community need to discover and implement new methods of knowledge generation and translation. As an association that values research to practice, and improving the lives of people with disabilities, IASSIDD plays a major role in refining and promoting these emerging approaches to knowledge generation and translation, and their integration into policy and service developments.
    June 19, 2013   doi: 10.1111/jppi.12036   open full text
  • Human Rights Law for Persons With Disabilities in Asia and the Pacific: The Need for a Disability Rights Tribunal.
    Michael L. Perlin.
    Journal of Policy and Practice in Intellectual Disabilities. June 19, 2013
    Human rights are arguably the most significant political force shaping the life experience of people with disability. The United Nations Convention on the Rights of Persons with Disabilities sets the standard at an international level, creating both positive and negative rights, and calls upon member states of the United Nations (UN) to develop policies and enact programs to safeguard and progress these rights for people with disabilities. However, without some means of enforcement, UN conventions and national policies can amount to little more than political rhetoric. The paper reviews legal mechanisms and processes established in various regions of the world to enforce the human rights of people with disability. The author examines the role of litigation in upholding the rights of individuals and of groups and critiques the proposed facilitators and barriers to the establishment and effective operation of regional human rights tribunals. Evidence from case law demonstrates that national courts can be powerful forces in mandating the practical implementation of international law. However, litigation in these jurisdictions appear most evident and effective where there has been a body of law established by regional commissions; such as The European Court on Human Rights, The Inter‐American Commission on Human Rights, and The African Commission on Human Rights. The United Nations Convention on the Rights of Persons with Disabilities is, potentially, the single most transformative legal initiative affecting persons with disabilities. However, it is unlikely that it will have any significant impact in Asia and the Pacific because of the absence of a regional court or commission in that area of the world. The creation of a Disability Rights Tribunal for Asia and the Pacific offers a solution to this dilemma.
    June 19, 2013   doi: 10.1111/jppi.12032   open full text
  • Challenges of the Harmonization and Ratification of Convention on the Rights of Persons With Disabilities by Japan.
    Nagase Osamu.
    Journal of Policy and Practice in Intellectual Disabilities. June 19, 2013
    There are 130 ratifications by national governments around the world of the Convention on the Rights of Persons with Disabilities (CRPD), adopted by the United Nations in December 2006. However, Japan has yet to ratify the CRPD. The author examined the social, political, and legal context in Japan, affecting the ratification of the CRPD and contrasted the approach taken by Japan with those of other countries that have ratified the CRPD and then embarked on local reforms. The author notes that in Japan, the disability rights movement has insisted that significant policy changes be undertaken before the government ratifies the CRPD. Consequently, in 2010, the Japanese government prepared a roadmap for ratification of the CRPD, which consisted of (1) a fundamental revision undertaken in 2011 of the Basic Law for Persons with Disabilities, including the fundamental principles of community living, prohibition of disability discrimination, and international partnerships; (2) a revision of services legislation in 2012; and (3) proposed for 2013, an establishment of an independent law to prohibit disability discrimination. Other areas of legislation and policy that underwent review include the education of children with disabilities, the prevention of abuse of persons with disabilities, and support to carers and the political rights of persons under adult guardianship. The author notes that there are a number of challenges ahead for the implementation of the CRPD and consequently the promotion of community living. However, it is posited that the comprehensive legislative and policy reform undertaken by the government of Japan, prior to ratification of the CRPD, will lay important foundations to enable Japan to fully comply with and take a leadership role in the implantation of the CRPD.
    June 19, 2013   doi: 10.1111/jppi.12030   open full text
  • Epilepsy and Intellectual and Developmental Disabilities.
    Hirokazu Oguni.
    Journal of Policy and Practice in Intellectual Disabilities. June 19, 2013
    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 particular attention is paid to children presenting with coexisting autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD). Complications in assessment and treatment arising from comorbidities are considered. The most recent and epidemiological survey of children with epilepsy demonstrates that approximately one‐fourth of patients with childhood epilepsy had ID. The prevalence of DD (including ADHD and ASD) in children with epilepsy ranges from 7.1% to 32%, which exceeds that of the general population. Multiple studies have suggested that ADHD in children with epilepsy is largely comorbid rather than cause and effect because it is already present before the onset of epilepsy in 80% of these children. However, the co‐occurrence of epilepsy and ASDs is frequent in people with known organic brain disorders, in which several causal relationships have been speculated. Recent studies have shown that the severity of ID is an important factor in determining the incidence of epilepsy complications in those with ASD, and also the incidence of ASD complications in those with epilepsy. The co‐occurrence of epilepsy, ID, and DD appears common. ID might play a key role in increasing the burden of epilepsy, as well as DD comorbidity. The comorbidity of ID and DD in patients with epilepsy might reduce the seizure threshold, resulting in an increase in the frequency of seizures as well as epileptiform electroencephalographic abnormalities, although evidence is limited and further investigations are warranted.
    June 19, 2013   doi: 10.1111/jppi.12035   open full text
  • The World Report on Disability and People With Intellectual Disabilities.
    Alana Officer, Tom Shakespeare.
    Journal of Policy and Practice in Intellectual Disabilities. June 19, 2013
    The World Report on Disability was requested by the World Health Assembly, the governing body of the World Health Organization (WHO). Because disability is broader than health, WHO partnered with the World Bank. The World Report was published in 2011 and provides a comprehensive scientific analysis on the global situation of people with disability that can support the implementation of the United Nations Convention on the Rights of Persons with Disability. Progress since the global launch of the Report in June 2011 has shown areas of awareness raising, policy development, funding, research, and technical support. Yet gaps exist, and there is a need to better inform policy and practice with particular reference to intellectual disability. The World Report on Disability makes nine recommendations: enable access to mainstream policies, systems, and services; invest in specific programs and services for people with disabilities; adopt a national disability strategy and plan of action; involve people with disabilities; improve human resource capacity; provide adequate funding and improve affordability; increase public awareness and understanding of disability; improve disability data collection; and strengthen and support research on disability. The World Report on Disability has increased awareness and understanding of issues affecting people with disability, and is serving to focus government attention on policies and programs that will support the implementation of the United Nations Convention on the Rights of Persons with Disability, 2006. Particularly in the world's poorest countries, people with intellectual disabilities are disproportionately disadvantaged. The World Report is an important tool to build a global commitment to the promotion of inclusion for all persons with disabilities, and especially those with intellectual disability.
    June 19, 2013   doi: 10.1111/jppi.12031   open full text
  • Parents With Intellectual Disability and Their Children: Advances in Policy and Practice.
    Gwynnyth Llewellyn.
    Journal of Policy and Practice in Intellectual Disabilities. June 19, 2013
    In many countries, women and men with intellectual disability (ID) marry and have children of their own; however, in some countries, this is still taboo. Reproduction and parenting by people with ID is often a “hot” topic. Important questions related to this phenomenon include: Can people with ID provide “good enough” parenting? Can they be taught to be good parents? What about their children; should their children be taken away and cared for by someone else? Issues concerning healthcare that can support parenting, together with what supports are necessary for people to exercise the right to retain their fertility and to have their own family bear examination. In the Asia‐Pacific region, an expanding focus on disability rights, deinstitutionalization, and inclusive policies means that there are more opportunities for people with ID to become parents. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) and the Incheon Strategy to “Make the Right Real” for Persons with Disabilities in Asia and the Pacific region both address these issues. Both promote disability‐inclusive policies and practices derived from a rights‐based framework; the right to reproduction is viewed as a fundamental human right and individual freedom. However, parenting rights and responsibilities are governed by cultural mores and societal traditions. Research primarily from high‐income countries across the last four decades demonstrates that most parents with ID can provide sufficiently good parenting when appropriate supports are in place. Research on this topic to advance policy and practice needs to happen in specific national, geographical, cultural, and societal contexts. Furthermore, policy development is required to meet the goals and targets of the Incheon Strategy. Regional networks and national organizations of and for people with disabilities are challenged to include reproductive care and parenting programs in their policy and advocacy work.
    June 19, 2013   doi: 10.1111/jppi.12033   open full text
  • Inclusive Education in Korea: Policy, Practice, and Challenges.
    Yong Wook Kim.
    Journal of Policy and Practice in Intellectual Disabilities. June 19, 2013
    Even though the Korean experience with special education in the public education system is limited, inclusive education for special education needs (SEN) students has been at the center of attention at the national policy level since the mid‐1990s. Since then, Korean educators and administrators have put an emphasis on the revision and regulation of special education policies, guaranteeing the rights of SEN students to learn, and fostering the quality of teachers to strengthen inclusive education. These efforts have led to progress supporting inclusive education. However, there is still much to be achieved. The author examined the current practices and policies of inclusive education and the challenges to implementing successful inclusive education in Korea and found that what is needed is to transform the existing climate of the schools from being competition‐driven to being more cooperative and human‐centered. We need strong leadership from principals and administrators. The Korean process also needs to implement disability awareness programs at the national level in order to improve social perceptions. There is a need for closer collaboration and a stronger partnerships between regular and special education teachers. Teachers need to adopt a positive attitude and perception toward SEN students, and to achieve this, there is a need to provide preservice and in‐service education to promote among teachers the notions inherent to inclusive education. The challenges are long standing complicated issues with respect to the practice of inclusion in Korea. Many of these challenges at times appear almost impossible to resolve. However, every year, more SEN students want to participate in inclusive education and both regular and special education teachers, together with administrators and parents, believe inclusive education is a worthwhile ideal for the education of SEN students.
    June 19, 2013   doi: 10.1111/jppi.12034   open full text