Showing papers in "Intellectual and Developmental Disabilities in 2018"
TL;DR: Efforts to improve family-centered, culturally relevant care for all Black caregivers raising children with or at-risk for ASD are needed, particularly for those families experiencing the multiple effects of poverty.
Abstract: Black children with autism spectrum disorder (ASD) are diagnosed later than their White peers, are more likely to be misdiagnosed, and are less likely to receive early intervention services or a developmental evaluation by three years old. Using a grounded theory approach, we solicited the perspectives of parents and other primary caregivers of Black children with ASD on barriers and facilitators to ASD screening and referrals in primary care. A socioeconomically diverse sample of 22 female caregivers participated. Four themes emerged. First, while some caregivers noted their child's primary healthcare providers facilitated a timely ASD diagnosis, other participants reported these providers ignored early concerns about child developmental delays. Second, many participants felt racial bias negatively impacted caregiver-primary healthcare provider interactions. Third, legal/custodial issues slowed caregivers' abilities to follow up on referrals from their primary healthcare providers. Finally, caregivers described denial, shame, and stigma relating to ASD in the Black community as possible factors for delayed follow up to referrals. Differences based on socioeconomic status are discussed. Efforts to improve family-centered, culturally relevant care for all Black caregivers raising children with or at-risk for ASD are needed, particularly for those families experiencing the multiple effects of poverty.
64 citations
TL;DR: DSP continuity is central to quality of life of people, including human security, community, relationships, choice, and goals, and States cannot continue to provide near-poverty level reimbursement rates for DSPs and still ensure quality ofLife.
Abstract: Direct Support Professionals (DSPs) are the "backbone" of long term services and supports (LTSS) in the United States ( Bogenschutz, Hewitt, Nord, & Hepperlen, 2014 , p 317) This study examined the relationship between DSPs and people with intellectual and developmental disabilities' (IDD) quality of life To do so, we utilized Personal Outcome Measures® interviews from over 1,300 people with IDD to examine the impact DSP change has at individual and organizational levels We found DSP continuity is central to quality of life of people, including human security, community, relationships, choice, and goals States cannot continue to provide near-poverty level reimbursement rates for DSPs and still ensure quality of life
49 citations
TL;DR: Parents of individuals with IDD who were older, more educated, attended more parent training and support activities, and had children with fewer functional abilities, were more likely to engage in future planning.
Abstract: Although individuals with intellectual and developmental disabilities (IDD) are living longer lives, fewer than half of parents of individuals with IDD conduct future planning. The correlates and barriers to future planning must be identified to develop targeted interventions to facilitate future planning. In this study, 388 parents of individuals with IDD responded to a national, web-based survey. Participants who were older, more educated, attended more parent training and support activities, and had children with fewer functional abilities, were more likely to engage in future planning. Reported barriers to future planning included: (a) lack of available services, (b) financial challenges, (c) reluctance of family members, (d) lack of time, (e) the emotional nature of future planning, (f) inertia, and (g) a lack of family members to be caregivers. Implications for policy, practice, and future research are discussed.
37 citations
TL;DR: A holistic theoretical framework that can be used to explain intellectual disability (ID) and organize relevant information into a usable roadmap to guide understanding and application is described.
Abstract: This article describes a holistic theoretical framework that can be used to explain intellectual disability (ID) and organize relevant information into a usable roadmap to guide understand...
32 citations
TL;DR: In this paper, an approach to understand students by their support needs in relation to curricular demands, instructional strategies, and participation requirements is proposed as a means to enhance the capacities of schools and general education classrooms to educate all students.
Abstract: Progress in including students with the most significant cognitive disabilities in general education environments has been unquestionably slow during the past quarter century. Systematic approaches to identifying and arranging supports are needed to accelerate this outcome. In this article, we propose an approach to understanding students by their support needs in relation to curricular demands, instructional strategies, and participation requirements as a means to enhance the capacities of schools and general education classrooms to educate all students.
32 citations
TL;DR: Inclusion of co-researchers with ID was found to be both meaningful and feasible and the feasibility of their inclusion based on perspectives of research staff (academic faculty and graduate students without ID) was found.
Abstract: Participatory action research methodologies may empower and protect marginalized individuals; however, they remain underutilized. Limited studies have investigated the impact of participatory action research, specifically on individuals with intellectual disability (ID). This study examines (1) the perspectives of co-researchers with ID on their involvement in the research process and (2) the feasibility of their inclusion based on perspectives of research staff (academic faculty and graduate students without ID). Three co-researchers with ID were interviewed regarding their research participation. Thematic analysis of interviews identified four themes: (1) Shared Experience of Disability, (2) Teaching and Guidance, (3) Acquisition of Skills and Knowledge, and (4) Value of Participation. Research staff reviewed field notes and identified benefits and challenges to feasibility of including co-researchers with ID. Inclusion of co-researchers with ID was found to be both meaningful and feasible.
24 citations
TL;DR: This article evaluated the effect of a multicomponent mathematics intervention (modified schema-based instruction, video anchors, and goal setting with self-graphing) on mathematical problem-solving skills of secondary students with intellectual and developmental disabilities.
Abstract: The purpose of this study was to evaluate the effect of a multicomponent mathematics intervention (modified schema-based instruction, video anchors, and goal setting with self-graphing) on mathematical problem-solving skills of secondary students with intellectual and developmental disabilities. Three participants were taught to solve percent of change word problems, which involved calculating the discounted price of an item or activity after using a coupon and then determining whether they had enough money to make the purchase. Results of the multiple probe across participant design indicate a functional relation between the intervention and problem solving, and all participants were able to generalize skills from word problems to real-world stimuli (i.e., coupons, receipts, menus). Implications for practice and future research are discussed.
17 citations
TL;DR: DSPs in the present study had a higher average ACE score and nearly twice the percentage of persons having an ACE score of four or more than other studies, and the potential implications of ACEs among DSPs, at the intersection of their work with individuals with IDD, are discussed.
Abstract: Direct support professionals (DSPs) provide integral support to many individuals with intellectual and developmental disabilities (IDD). Yet, individuals' access to qualified DSPs is often compromised as organizations struggle to hire and retain DSPs. Despite a vast body of research exploring factors associated with turnover, adverse childhood experiences (ACEs) among DSPs remain absent from the literature. ACEs encompass abuse and familial dysfunction prior to the age of 18 and, in the general population, have been linked to compromised well-being and work-related challenges in adult life. An online survey was conducted to explore the prevalence of ACE categories and ACE scores (i.e., the sum of each ACE category experienced by a person) among DSPs (n = 386) working in licensed settings. Seventy-five percent of DSPs experienced at least one ACE and 30% had an ACE score of four or more. DSPs who identified as female and those who had been in their position less than one year had significantly hig...
16 citations
TL;DR: In this article, the authors argue that every child has the right to an education, including children with disabilities, and that the benefits of inclusive education can be seen across the globe.
Abstract: Every child has the right to an education, including children with disabilities. Research findings from across the globe have shown the benefits of inclusive education, and mandates for pr...
16 citations
TL;DR: A model that systems can use to build contexts that enhance human functioning and promote valued outcomes for individuals with intellectual disability and a number of indicators that can be used to assess the quality of a system's responsiveness based on their implementation of the model are proposed.
Abstract: This article describes a model that systems can use to build contexts that enhance human functioning and promote valued outcomes for individuals with intellectual disability (ID) Our premise is that that systems have a responsibility to build contexts that enhance human functioning and promote valued outcomes for people with ID, and that this obligation can be met through the use of contextual analysis to deliberately design and implement support strategies that are responsive to identified contextual factors The model employs a 2-step process to identify context-based independent and intervening variables and align support strategies with identified context-based influencing factors, disability policy goals, and associated outcome domains We propose a number of indicators that can be used to assess the quality of a system's responsiveness based on their implementation of the model Implications for research and practice are discussed
14 citations
TL;DR: The authors used interpretative phenomenological analysis of individual, semistructured interviews conducted with 8 Australian adults with ID to understand the meaning given to their experience of family support received around choice and decision making.
Abstract: Increased choice and control is a driving force of current disability policy in Australia for people with disability and their families. Yet little is known of how adults with intellectual disability (ID) actually experience choice and control within their family relationships. We used interpretative phenomenological analysis of individual, semistructured interviews conducted with 8 Australian adults with ID to understand the meaning given to their experience of family support received around choice and decision making. Three themes were identified: (1) centrality of family, (2) experience of self-determination, and (3) limitations to choice and control. The participants identified trusted family members from whom guidance around choice and decision making was both sought and received, often involving mutual decision making and limitations to control.
TL;DR: Key themes that emerged were the role of the grandparent, boundaries in roles and space, navigating family dynamics, and the general experiences of grandparenting.
Abstract: Grandparents can play critical roles in the lives of children with intellectual and developmental disabilities and their families. However, current research and understanding around grandparent roles and experiences is limited. The purpose of this qualitative study was to examine the roles and experiences of grandparents supporting children with disabilities. In this article, the voices of grandparents with diverse experiences are presented. Key themes that emerged were the role of the grandparent, boundaries in roles and space, navigating family dynamics, and the general experiences of grandparenting. These findings have implications for the types of supports provided to grandparents and for practitioners working with families who have actively involved grandparents.
TL;DR: This review of literature from peer-reviewed journals seeks to understand if culturally responsive practices are utilized with culturally and linguistically diverse families during transition planning and whether culturally sustaining practices strengthen partnerships between teachers and CLD families and adolescents with disabilities, including those with ID.
Abstract: The increasingly diverse population in the United States calls for schools to address the breadth of cultural histories students bring with them to the classroom. High school students with disabilities are also diverse in terms of cultural histories, race, ethnicities, religions, and citizenship. These factors intersect as families engage in planning for the transition to adulthood. A requisite for culturally diverse families with young adults who receive services under the educational category of intellectual disability (ID) are school professionals who can meaningfully collaborate. This review of literature from peer-reviewed journals seeks to understand if culturally responsive practices are utilized with culturally and linguistically diverse (CLD) families during transition planning. This review also explored whether culturally sustaining practices strengthen partnerships between teachers and CLD families and adolescents with disabilities, including those with ID. Implications are associated with how teachers can perceive diversity from a strengths perspective as a vital component of transition planning.
TL;DR: Findings suggest that, generally, youth with intellectual disability endorsed character strengths as being like them at lower levels, although few differences were significant.
Abstract: This article reports the results of an examination of the endorsement, reliability, and factorial validity of the VIA–Youth and assessment of character strengths and virtues developed for the general population in youth with and without intellectual disability. Findings suggest that, generally, youth with intellectual disability endorsed character strengths as being like them at lower levels, although few differences were significant. Issues related to measurement, particularly the establishment of measurement invariance, emerged for some virtues. Reliability of the scale was similar across the two groups. Implications for future research and practice are discussed.
TL;DR: This paper identified four core practices of expert teachers for students with extensive support needs, and theorize the progression from novice to expert for each core practice using Dreyfus's (2004) model of expertise.
Abstract: Expertise among teachers of students with extensive support needs is not well understood, and beliefs about what constitutes quality education for this population vary widely. We discuss findings from prior research on teacher preparation in relation to high-leverage practices and expertise development for students with extensive support needs within the social contexts of schools. We identify four core practices of expert teachers for students with extensive support needs, and we theorize the progression from novice to expert for each core practice using Dreyfus's (2004) model of expertise.
TL;DR: This investigation of how young adults with intellectual and developmental disabilities and their parents jointly construct, articulate, and act on goals pertinent to the young adults' transition to adulthood found that lack of external supports and limited parental knowledge about IDD hindered joint project formulation.
Abstract: Eight dyads (N = 16) residing in Western Canada participated in this investigation of how young adults with intellectual and developmental disabilities (IDD) and their parents jointly construct, articulate, and act on goals pertinent to the young adults' transition to adulthood. Using the action-project method to collect and analyze conversations and video recall data, cases were grouped representing the ways goal-directed projects brought relationship (n = 4), planning (n = 3) or both (n = 1) to the foreground as joint projects. Resources internal to the dyad such as emotional resources, and external to the dyad, facilitated formulation and pursuit of projects. Lack of external supports and limited parental knowledge about IDD hindered joint project formulation.
TL;DR: Findings from this study suggest that DSPs experience several barriers when trying to promote the health of those with DD, one of which is fear of violating the rights of people with DD.
Abstract: Direct support professionals (DSPs) play a large social role in the lives of people with developmental disabilities (DD) and have the potential to influence their health behaviors. Six qua...
TL;DR: Clinicians were most confident with generic counseling skills, but less confident with elements of assessments and interventions, and the use of treatment protocols was endorsed as helpful particularly among those with low confidence.
Abstract: Research supports the use of psychological therapies among people with mild to moderate intellectual disability (ID). One barrier to people with ID accessing psychological treatments is the confidence of mental health practitioners. This article explores the confidence of Australian clinicians in providing therapy to people with ID. One hundred and fifty-two psychologists and counselors in Australia completed a survey exploring self-reported confidence when working with clients who have ID and mental health difficulties. Clinicians were most confident with generic counseling skills, but less confident with elements of assessments and interventions. The use of treatment protocols was endorsed as helpful particularly among those with low confidence. This highlights the need for dissemination of treatment guides and training to help increase clinician confidence.
TL;DR: Analysis of the 2010 Healthcare Cost and Utilization Project Nationwide Inpatient Sample indicated discharges linked to women with IDD indicated these women were younger, had longer hospital stays, and were more likely to have public insurance coverage.
Abstract: There is a dearth of existing research on the treatment of reproductive cancers among women with intellectual and developmental disabilities (IDD). This study analyzed the 2010 Healthcare Cost and Utilization Project Nationwide Inpatient Sample and compared the prevalence of reproductive cancer treatment hospitalization discharges among women with and without IDD. Discharges linked to women with IDD had higher incidences of cancer of the uterus and lower prevalence of cancer of the cervix. Moreover, discharges linked to women with IDD indicated these women were younger, had longer hospital stays, and were more likely to have public insurance coverage. Therefore, further research and targeted interventions to increase cancer prevention and screening are urgently needed.
TL;DR: Three key themes emerged from the analysis of negative and positive experiences of Hispanic caregivers from a Midwestern state as they support their family members with disabilities to achieve positive postschool outcomes, including competitive employment.
Abstract: The rate of competitive employment, or employment in community settings for minimum wage or higher, of working-age individuals with disabilities trails behind individuals without disabilities in the United States. These statistics are even more alarming among Hispanic individuals who have disabilities. The purpose of this study was to explore the negative and positive experiences of Hispanic caregivers from a Midwestern state as they support their family members with disabilities to achieve positive postschool outcomes, including competitive employment. We conducted semistructured interviews with 13 caregivers of family members with disabilities aged 14-25 years. Three key themes emerged from our analysis: (a) negative experiences with school educators, (b) negative experiences with community-based service providers, and (c) positive experiences and strategies for overcoming barriers. Implications for practice and future research are discussed.
TL;DR: Higher education programs for students with intellectual and developmental disabilities (IDD) offer opportunities to engage in college experiences including access to typical college courses as discussed by the authors, including typical academic and social activities.
Abstract: Higher education programs for students with intellectual and developmental disabilities (IDD) offer opportunities to engage in college experiences including access to typical college cours...
TL;DR: The results of the current study support the family resilience model as a foundation for future research regarding how families navigate significant transitions throughout the lifespan and suggest empowerment plays a key role in positive family adaptation.
Abstract: Using the family resilience model, we examined the association between empowerment, family member age, length of institutionalization, and resilience among family members of relatives with intellectual and developmental disabilities (IDD) following deinstitutionalization. Participants included 56 family members whose relatives with IDD recently transitioned to community living. Results strongly indicate empowerment plays a key role in positive family adaptation. Thus, following a relative's move from an institution to the community, empowerment is a promising form of protection that holds potential to increase family resilience. The results of the current study support the family resilience model as a foundation for future research regarding how families navigate significant transitions throughout the lifespan. Implications for practice and policy are provided.
TL;DR: A mixed pattern of differences in rates of service use and costs when compared to the general population depending upon personal characteristics, health status, and type of health care service is found.
Abstract: Health services and associated costs for adults with intellectual and developmental disabilities (IDD) were nationally profiled and the predictors of high expense users statistically modeled. Using linked data from the National Health Interview Survey and Medical Expenditure Panel Survey for the years 2002 through 2011, the study found a mixed pattern of differences in rates of service use and costs when compared to the general population depending upon personal characteristics, health status, and type of health care service. Prescription medication costs were the primary driver of total health care expenditures for Americans with IDD. The presence of secondary chronic health conditions and poor mental health status were the consistent predictors of high expense users across types of health care. Study results are discussed in terms of implications for more nuanced evaluations of health care costs and need for recurring surveillance of health care for Americans with IDD in the years following pas...
TL;DR: If and how restraint, restrictive interventions, and seclusion were permitted in Medicaid HCBS 1915(c) waivers, the largest providers of long-term services and supports for people with IDD, was explored to determine if and how states permitted them.
Abstract: Restraint, restrictive interventions, and seclusion are hotly contested practices with inconclusive evidence of their effectiveness. Because the use of restraint and seclusion on people with intellectual and developmental disabilities (IDD) is controversial and its effectiveness doubtable, this study was conducted to explore if and how they were permitted in Medicaid HCBS 1915(c) waivers, the largest providers of long-term services and supports (LTSS) for people with IDD. To do so, 111 fiscal year 2015 IDD waivers from across the nation were examined to determine if and how states permitted restraint, restrictive interventions, and seclusion. Findings revealed an overwhelming majority of waivers permitted the use of restraint (78.4%) and restrictive interventions (75.7%). A smaller proportion (24.3%) allowed the use of seclusion.
TL;DR: Results of the difference-in-differences (DID) regression analysis suggest that there were no significant state Medicaid cost savings in transitioning people with IDD from FFS to MMC.
Abstract: States have increasingly transitioned Medicaid enrollees with disabilities from fee-for-service (FFS) to Medicaid Managed Care (MMC), intending to reduce state Medicaid spending and to provide better access to health services. Yet, previous studies on the impact of MMC are limited and findings are inconsistent. We analyzed the impact of MMC on costs by tracking Illinois's Medicaid acute health services expenditures for adults with intellectual and developmental disabilities (IDD) living in the community (n = 1,216) before and after their transition to MMC. Results of the difference-in-differences (DID) regression analysis using an inverse propensity score weight (IPW) matched comparison group (n = 1,134) design suggest that there were no significant state Medicaid cost savings in transitioning people with IDD from FFS to MMC.
TL;DR: There is a disconnect between the large number of waivers that allowed participant direction, and states' extremely low goals for actual utilization of participant direction.
Abstract: Participant direction allows people with intellectual and developmental disabilities (IDD) and/or their families to direct services; in doing so, participant direction shifts participants ...
TL;DR: Findings highlight systemic barriers that need to be addressed to ensure successful transition, as well as the need for a specialized Transition Clinic with involvement of specialists with expertise in IDD, such as Developmental-Behavioral Pediatrics, to assist throughout transition process.
Abstract: Youth with intellectual and developmental disabilities (IDD) often experience difficulties with successful transition from pediatric to adult healthcare. A consultative Transition Clinic for youth with IDD was piloted as a quality improvement project, and assessed the engagement of primary care providers (PCPs) for transition planning after patients were seen in clinic. Although many PCPs found the clinic and resources useful, individual and systemic barriers often prohibited them from participating in transition planning for this patient population. These findings highlight systemic barriers that need to be addressed to ensure successful transition, as well as the need for a specialized Transition Clinic with involvement of specialists with expertise in IDD, such as Developmental-Behavioral Pediatrics, to assist throughout transition process.
TL;DR: The hope is that this article might provide a fresh way to understand some of the factors that contribute to the use of restraint, in addition to providing some suggestions to proactively address those factors.
Abstract: In the past several years, there has been an important movement to reduce the utilization of restraint for individuals with developmental disabilities. Legislatures, local and national, are taking on the task of shaping the way that our culture supports people who, up until now, have been often treated in a punitive manner rather than truly supportive in a therapeutic way. Schools and systems of care struggle to identify strategies that offer more positive outcomes to all individuals, even those with challenging behaviors. This article represents the thoughts and recommendations of one parent who has lived with the damage done by restraint to his son. The recommendations are intended to speak to administrators, schools, and caregivers. The intent is not to assign blame, but rather to reflect on our experiences and share some strategies that have worked for us. Although much of what is recommended may not be new, the hope is that this article might provide a fresh way to understand some of the factors that contribute to the use of restraint, in addition to providing some suggestions to proactively address those factors.
TL;DR: It is found that most workers with intellectual and developmental disabilities retire in older age and that their retirement appears to be sudden, rather than a gradual reduction in work hours.
Abstract: To begin to understand retirement, we examined age-related differences in (a) employment rates, employment hours, and rates of individual-plan employment goals; and (b) participation rates in unpaid formal day programs. We report weighted analyses of 2014-15 National Core Indicators data from 32 states. Unlike younger age groups, a similar proportion of workers with intellectual and developmental disabilities continued working beyond age 65 as for the general community. We found that most workers with intellectual and developmental disabilities retire in older age and that their retirement appears to be sudden, rather than a gradual reduction in work hours. Facility-based day programs were the only program with an increased participation rate in older age groups, revealing an even greater reliance on facility-based services for older participants.
TL;DR: The authors examined the beliefs and experiences of special education teachers about inclusive education for secondary age students with severe disabilities and co-existing compressive and non-constraint learning environments in a qualitative study.
Abstract: This qualitative study examined the beliefs and experiences of special education teachers about inclusive education for secondary age students with severe disabilities and co-existing comp...