Showing papers in "Intellectual and Developmental Disabilities in 2016"
TL;DR: The problems created by an inaccurate statement that appears in the DSM-5 regarding a causal link between deficits in intellectual functioning and adaptive behavior are discussed and an immediate revision is proposed to remove this erroneous and confounding statement.
Abstract: Intellectual disability originates during the developmental period and is characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. In this article, we present a brief history of the diagnostic criteria of intellectual disability for both the DSM-5 and AAIDD. The article also (a) provides an update of the understanding of adaptive behavior, (b) dispels two thinking errors regarding mistaken temporal or causal link between intellectual functioning and adaptive behavior, (c) explains that there is a strong correlational, but no causative, relation between intellectual functioning and adaptive behavior, and (d) asserts that once a question of determining intellectual disability is raised, both intellectual functioning and adaptive behavior are assessed and considered jointly and weighed equally in the diagnosis of intellectual disability. We discuss the problems created by an inaccurate statement that appears in the DSM-5 regarding a causal link between deficits in intellectual functioning and adaptive behavior and propose an immediate revision to remove this erroneous and confounding statement.
90 citations
TL;DR: Using national data, it is found that Latino and Black adults with IDD had worse health outcomes compared to White adults with IDs, and Latino and Blacks adults withIDD had better health outcomes than nondisabled adults from the same racial and ethnic group.
Abstract: Racial and ethnic health disparities are a pervasive public health problem. Emerging research finds similar health disparities among people with intellectual and developmental disabilities (IDD) compared to nondisabled adults. However, few studies have examined racial and ethnic health disparities among adults with IDD. Using national data, we examined racial and ethnic disparities in health status among adults with IDD, and investigated differences in health status between adults with IDD and nondisabled adults within each racial and ethnic group. We found that Latino and Black adults with IDD had worse health outcomes compared to White adults with IDD, and Latino and Black adults with IDD had worse health outcomes than nondisabled adults from the same racial and ethnic group.
52 citations
TL;DR: This article will explore some fundamental humanistic concepts that ought to be reconciled in order for behaviorism to be considered a humanistic practice.
Abstract: The field of educating individuals with Autism Spectrum Disorder has ever been rife with controversy regarding issues ranging from etiology and causation to effective intervention and educ...
50 citations
TL;DR: A review of the literature was conducted focusing on programs developed to target behavioral changes in the person with ID, finding programs varied significantly in design, targeted health change, and demonstrated effectiveness.
Abstract: People with intellectual disability (ID) experience high rates of chronic health problems and poor overall health compared to people without disabilities. Recent attention to health risk behaviors such as poor diet, lack of physical activity, and underuse of health care has led to the development of several programs intended to reduce disparities in this population through health promotion programs. A review of the literature was conducted focusing on programs developed to target behavioral changes in the person with ID. Thirteen studies, evaluating 10 different health promotion programs, were found. Programs varied significantly in design, targeted health change, and demonstrated effectiveness. Components of each program are systematically reviewed and recommendations made for future programs based upon the current evidence.
34 citations
TL;DR: Though it is unclear whether good group homes have a similar culture to better ones the insights from this study provide knowledge to guide service development and evaluation.
Abstract: Building on cultural dimensions of underperforming group homes this study analyses culture in better performing services. In depth qualitative case studies were conducted in 3 better group homes using participant observation and interviews. The culture in these homes, reflected in patterns of staff practice and talk, as well as artefacts differed from that found in underperforming services. Formal power holders were undisputed leaders, their values aligned with those of other staff and the organization, responsibility for practice quality was shared enabling teamwork, staff perceived their purpose as "making the life each person wants it to be," working practices were person centered, and new ideas and outsiders were embraced. The culture was characterized as coherent, respectful, "enabling" for residents, and "motivating" for staff. Though it is unclear whether good group homes have a similar culture to better ones the insights from this study provide knowledge to guide service development and evaluation.
33 citations
TL;DR: This study determined the effectiveness of ASD training for medical students and reported improved knowledge, skills, confidence, and comfort in caring for patients with ASD.
Abstract: People with autism spectrum disorder (ASD) and other developmental disabilities have poorer health and face unique barriers to health care compared to people without disabilities These he
28 citations
TL;DR: It is found that adults with intellectual disability value direct and indirect research benefits, and want to participate in research that offers them, compared to other stakeholders, who generally see less value in direct benefits.
Abstract: Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family and friends, service providers, researchers, and institutional review board members. We found that adults with intellectual disability value direct and indirect research benefits, and want to participate in research that offers them. Other stakeholders generally see less value in direct benefits and predict more tempered interest in research participation as compared to adults with intellectual disability. To promote respectful research participation, research policy and practice should incorporate the views of adults with intellectual disability.
26 citations
TL;DR: Foster children with intellectual disability were more likely to have experienced an adoption disruption or dissolution but less likely to be reunified with a parent, primary caretaker or other family member.
Abstract: The promotion of speedy, permanent outcomes for foster children is a central child welfare policy goal. However, while children with intellectual disability (ID) are at greater risk for child welfare involvement, little is known about their case outcomes. This cross-sectional national study explores between-group foster care outcomes. Foster children with intellectual disability were more likely to have experienced an adoption disruption or dissolution but less likely to be reunified with a parent, primary caretaker or other family member. Implications for interagency collaboration in support of pre and post-foster care discharge support services are discussed.
25 citations
TL;DR: Moderate material hardship is found to be pervasive among sibling caregivers, though extreme levels of hardship are possibly being abated somewhat through public benefit programs.
Abstract: In growing numbers, people with intellectual and developmental disabilities are outliving their parents, or at least their parents' ability to care for them. Consequently, adult siblings w...
25 citations
TL;DR: It is indicated that people with ID are interested in voting and desire to be included in the voting process yet receive little education on political issues or on how to make voting-related decisions.
Abstract: Despite a strong societal commitment to ensuring that individuals with intellectual disability (ID) fully participate in their communities, few people with ID vote. Little is known about voting experiences from the perspective of people with ID. In-person, semistructured interviews were conducted with 28 adults with ID (Mage = 37 years) to obtain their input on voting. Constant comparison and content analysis methods were used to characterize themes. Results indicated that people with ID are interested in voting and desire to be included in the voting process yet receive little education on political issues or on how to make voting-related decisions. Support from family or service providers and self-advocacy facilitated their ability to vote. Implications of these findings and recommendations for future research are discussed.
25 citations
TL;DR: This qualitative study evaluates the implementation of the health check at two primary-care clinics in Ontario, Canada, and the influence of the clinic context on implementation decisions, finding that some components were operationalized differently.
Abstract: Compared to other adults, those with intellectual and developmental disabilities have more health issues, yet are less likely to receive preventative care. One strategy that has shown success in increasing prevention activities and early detection of illness is the periodic comprehensive health assessment (the health check). Effectively moving evidence into practice is a complex process that often receives inadequate attention. This qualitative study evaluates the implementation of the health check at two primary-care clinics in Ontario, Canada, and the influence of the clinic context on implementation decisions. Each clinic implemented the same core components; however, due to contextual differences, some components were operationalized differently. Adapting to the setting context is important to ensuring successful and sustainable implementation.
TL;DR: A scoping review of the intellectual disability literature from 2001-2015 suggested that existing research rarely uses definitions of participation, but does examine participation across multiple domains and addresses issues of access and inclusion.
Abstract: Participation is a central aspect of human functioning and a key focus of research and practice in the intellectual disability field. However, there is not an accepted definition of participation that guides research and practice. To inform the development of a definition, a scoping review of the intellectual disability literature from 2001-2015 was conducted. Findings suggest that existing research rarely uses definitions of participation, but does examine participation across multiple domains and addresses issues of access and inclusion. Less focus was placed on individual aspects of participation such as meaning, responsibility, and choice. Based on the findings, implications for future research and practice are provided.
TL;DR: An intervention designed to inform parents in Tanzania about ASD and empirically supported behavioral strategies is described to help to ameliorate treatment disparities due to insufficient regional knowledge, language barriers, or limited service availability and may help improve functional outcomes among Tanzanian children with ASD.
Abstract: Despite the global presence of autism spectrum disorder (ASD), a paucity of treatment services exists in Tanzania and other low- and middle-income countries. The effect of delayed or low-quality treatments is enduring and contributes to lifelong variability in ASD-related functional impairments. Service disparities in Tanzania derive in part from a widespread lack of national ASD knowledge. Historically, in Western countries, parents have played a major role in increasing ASD awareness, advancing research, and encouraging empirically supported treatments. In the absence of established treatment services, parents of children with ASD have also learned to implement behavioral interventions to reduce the widening skills gaps. This article describes the development of an intervention designed to inform parents in Tanzania about ASD and empirically supported behavioral strategies. Preliminary data, collected from a clinical implementation with 29 Tanzanian families of children diagnosed with ASD or general developmental delays, support the initial feasibility and acceptability of this intervention. This brief intervention may help to ameliorate treatment disparities due to insufficient regional knowledge, language barriers, or limited service availability and may help improve functional outcomes among Tanzanian children with ASD.
TL;DR: If and how the term "mental retardation" was used within Medicaid Home and Community Based Services 1915(c) waivers is explored, as they are the most prevalent provider of long-term services and supports for people with intellectual and developmental disabilities.
Abstract: Rosa's Law, which changed references of “mental retardation” to “intellectual disability” within federal legislation, marked recognition by the federal government that the term “mental ret...
TL;DR: Females, younger people, and all racial and ethnic minority groups who received services had significantly lower expenditures, with wide geographic variations, over time in California.
Abstract: This study examined service use and expenditures for people with intellectual and developmental disabilities (IDD) living at home and in the community in California in 2005 and 2013. The number of people assessed for IDD services increased, along with the percentage of individuals who did not receive any services between 2005 and 2013. Controlling for client needs, children age 3-21 were less likely than other age groups to receive any services using logistic regressions. All racial and ethnic minority groups were less likely to receive any services than were white populations. Females, younger people, and all racial and ethnic minority groups who received services had significantly lower expenditures, with wide geographic variations. The disparities by age, gender, race/ethnicity, and geography have persisted over time in California.
TL;DR: A multiple case study that affords insight into the resilience of 24 adolescents with ID, which explains their resilience as enabled primarily by supportive social ecologies and positive orientation to their life-worlds co-facilitated their resilience.
Abstract: Resilience, or the process of adjusting well to risk, relies on constructive collaboration between youths and their social ecologies. Although the literature details the risks of an intellectual disability (ID), there is little explanation of why some young people cope well despite these risks. Accordingly, we report a multiple case study that affords insight into the resilience of 24 adolescents with ID. Using a draw-and-talk methodology, these young people explained their resilience as enabled primarily by supportive social ecologies (which facilitated behavioral and emotional regulation, encouraged mastery, treated them as agentic beings, and offered safe spaces). Adolescents' positive orientation to their life-worlds co-facilitated their resilience. These insights advance effective ways to champion the resilience of young people with ID.
TL;DR: Using a retrospective cohort design to follow 3,034 individuals living in Ontario, Canada, and assessed with the Resident Assessment Instrument-Home Care, individuals were characterized with a frailty index (FI) for persons with IDD, predicting institutionalization.
Abstract: Adults with intellectual and developmental disabilities (IDD) frequently become frail earlier than the general population, resulting in higher care needs. This population is at risk for institutionalization, or re-institutionalization, into long-term care (LTC). Using a retrospective cohort design to follow 3,034 individuals (18-99 years) living in Ontario, Canada, and assessed with the Resident Assessment Instrument-Home Care, individuals were characterized with a frailty index (FI) for persons with IDD. Survival analyses determined differences in rates of admission to LTC and survival in the community. Frail individuals had greater rates of admission than non-frail individuals, adjusted HR = 2.19, 95% CI [1.81, 2.64]. The FI predicts institutionalization.
TL;DR: The aim of this study was to learn from caregivers, who are either family or support staff, what major issues arise throughout the process of managing medication and how these might be addressed.
Abstract: People who have intellectual and developmental disabilities (IDD) often rely on caregivers to assist in the medication management process. The aim of this study was to learn from caregivers, who are either family or support staff, what major issues arise throughout the process of managing medication and how these might be addressed. Problems identified by caregivers include (a) prescribers understanding of insurance and agency policies regarding medication utilization; (b) lack of continuity of care and accuracy of the medication record as well as clinical records;
TL;DR: An innovative intervention based on narrative and life review therapy that is tailored to people with intellectual disability (ID) and psychiatric problems is described, which shows large changes in psychiatric symptoms.
Abstract: This article describes an innovative intervention based on narrative and life review therapy that is tailored to people with intellectual disability (ID) and psychiatric problems. The current study provides a first evaluation of the intervention. A symptom checklist (SCL-90) was used in a pre- and post-follow-up design, and a qualitative evaluation of the intervention was carried out with 25 participants. Results showed large changes in psychiatric symptoms, in particular on depression, anxiety, obsessive-compulsive disorder, and interpersonal sensitivity. Participants were mainly positive in their general explicit evaluations of the therapy as well as on personal learning points, intervention-specific, group-related, and therapist-related aspects. It is concluded that the intervention is promising for the treatment of people with ID and psychiatric complaints.
TL;DR: Examination of parent involvement in meaningful post-school experiences by eight young adults with IDD and pervasive support needs found parents were actively involved as fierce advocates and creative problem solvers.
Abstract: Despite initiatives supporting young adults with intellectual and developmental disabilities (IDD) to engage in post-secondary education and integrated employment, those with more intensive support needs are not as easily involved in these post-school experiences. In an effort to learn from positive examples, we examined parent involvement in meaningful post-school experiences by eight young adults with IDD and pervasive support needs. Secondary analysis of data from a prior interview study yielded this smaller sample of eight young adults with meaningful post-school experiences. Their parents were actively involved as fierce advocates and creative problem solvers. The active involvement of parents included: a) attitudinal facilitators, b) advocacy efforts and perceptions, and c) strategic actions. Implications for future research and practice are described.
TL;DR: The r-word was used frequently among high school students, most often toward individuals without intellectual disability (ID), and students were more likely to take an active bystander role when hearing the r- word used toward students with ID than when hearing it used towardStudents without ID.
Abstract: The present study explored the prevalence of the r-word in schools and students' bystander behavior in response to hearing the word. In total, 2,297 students from 12 high schools across th...
TL;DR: Examining how Medicaid HCBS Section 1915(c) waivers for people with intellectual and developmental disabilities allocate personal care services to pay family caregivers revealed about two thirds of waivers in fiscal year (FY) 2014 allowed for family caregivers to potentially be paid for personal care Services.
Abstract: The United States long-term services and supports system is built on largely unpaid (informal) labor. There are a number of benefits to allowing family caregivers to serve as paid personal care providers including better health and satisfaction outcomes, expanded workforces, and cost effectiveness. The purpose of this study was to examine how Medicaid HCBS Section 1915(c) waivers for people with intellectual and developmental disabilities allocate personal care services to pay family caregivers. Our analysis revealed about two thirds of waivers in fiscal year (FY) 2014 allowed for family caregivers to potentially be paid for personal care services. This amounted to up to $2.71 billion of projected spending, which is slightly more than half of all personal care service expenditures in FY 2014.
TL;DR: Perceptions of health and healthcare of people with intellectual and developmental disabilities receiving Medicaid Managed Care are examined, with implications for improving healthcare and communications between people with IDD and healthcare providers.
Abstract: This study examined perceptions of health and healthcare of people with intellectual and developmental disabilities (IDD) receiving Medicaid Managed Care. Exploratory, semistructured interviews were conducted with 23 participants. Findings indicate that participants generally expressed being in good health and defined good health as (a) absence of pain, disease, and symptoms; (b) adherence to or not requiring treatment; (c) physical self-care; (d) mental or spiritual self-care; and (e) ability to perform the activities one wants to do. Participants conceptualized healthcare as (a) ensuring needs are met through access to services, (b) obtaining quality services, (c) navigating the healthcare system successfully, and (d) receiving humanizing healthcare. This study has implications for improving healthcare and communications between people with IDD and healthcare providers.
TL;DR: Investigating those who were unemployed at the time of service entry showed people with IDD of different demographic groups had different outcomes, and those receiving three job-related services were 16 times more likely to obtain employment than the reference group.
Abstract: Job search, job placement, and on-the-job supports are valuable services provided to many people with intellectual and developmental disabilities (IDD) to obtain work in the community. Investigating those who were unemployed at the time of service entry, this study seeks to extend understanding about the effect of services. Using extant data, a sample of 39,277 people with IDD using Vocational Rehabilitation services were studied to understand the potential cumulative effects of these job-related services and individual characteristics on job attainment. Findings showed people with IDD of different demographic groups had different outcomes. Also, those receiving three job-related services were 16 times more likely to obtain employment than the reference group. This study has wide implications for research, policy, and practice.
TL;DR: In relationships with stronger connections, there was a higher quantity of self-disclosure and more frequent disclosure of emotions, and peer mentors responded more frequently with advice and reciprocated self- Disclosure.
Abstract: The purpose of this study was to examine the role of the self-disclosure process in regard to connection development and relationship quality in peer mentoring relationships between transition-age youth (ages 15-20) and young adults (ages 18-36) with intellectual and/or developmental disabilities. Self-disclosure is defined as "the disclosure of inner feelings and experiences to another person" that "fosters liking, caring, and trust, thereby facilitating the deepening of close relationships" ( Reis & Shaver, 1988 , p. 372). Nine peer mentoring dyads with varied interpersonal connections were purposefully selected from a larger intervention study. Recorded mentoring conversations were analyzed for self-disclosure content and peer mentor response. The findings demonstrated trends related to connection development and differences across degree of connection. In relationships with stronger connections, there was a higher quantity of self-disclosure and more frequent disclosure of emotions, and peer mentors responded more frequently with advice and reciprocated self-disclosure. Implications of findings for promoting higher-quality peer mentoring relationships are discussed.
TL;DR: Nameless group technique was used with a group of 10 self-advocates to evaluate a series of healthcare tools created by and for individuals with IDD and was found to be an effective way to engage all participants in the research process.
Abstract: Individuals with intellectual and developmental disabilities (IDD) have complex healthcare needs, which are often unmet. Nominal group technique (NGT) uses a mixed-methods approach, which may engage the IDD population in the research process in a person-centered manner and address the shortcomings of traditional research methods with this population. NGT was used with a group of 10 self-advocates to evaluate a series of healthcare tools created by and for individuals with IDD. Participants provided helpful input about the strengths of these tools and suggestions to improve them. NGT was found to be an effective way to engage all participants in the research process.
TL;DR: This study examines data collected from the District of Columbia Developmental Disabilities Administration's (DC DDA) health screening component of its Health and Wellness Standards, along with recommendations and implications for improving preventive health screening practices in the ID population.
Abstract: It is well documented that adults with intellectual disability (ID) experience higher rates of a series of health conditions compared to their peers without disability. These health conditions include cardiovascular disease, obesity, diabetes, gastrointestinal disorders, and psychiatric and behavioral disorders. With life expectancy approximating the general population, adults with ID are also now experiencing health conditions related to aging, further increasing their risk for diminished function and well-being. This increased morbidity poses new challenges in geriatric healthcare planning for this population. Relatively simple health prevention practices, such as the implementation of a health screening tool, can substantially increase disease detection and clinical activities directed toward improved health outcomes for people with ID. This study examines data collected from the District of Columbia Developmental Disabilities Administration's (DC DDA's) health screening component of its Health and Wellness Standards. Findings are presented, along with recommendations and implications for improving preventive health screening practices in the ID population.
TL;DR: The analysis revealed adequate reliability for the proposed instrument, with α values between .70 and .80, and adequate construct validity for the versions of the scale for the 3 information sources, particularly for service providers.
Abstract: People with intellectual disability (ID) engage in insufficient physical activity which negatively affects their health. In accordance with the present conception of ID and the supports pa...
TL;DR: Findings are presented from an investigation of two approaches to creating a protocol to assist SIS-A users in distinguishing situations where there is a high likelihood that support needs have not changed in meaningful ways from situations wherethere is a reasonable possibility thatsupport needs have changed.
Abstract: The Supports Intensity Scale – Adult Version (SIS—A) has been widely adopted throughout North America and the world since its publication a little over a decade ago. Many organizations and jurisdictions operate under regulations that require an annual assessment of people who receive services and supports that are financed through public funds. The time and energy devoted to an annual SIS—A reassessment has become a concern in cases where the resulting information is largely redundant with information from a prior assessment. This article presents findings from an investigation of two approaches to creating a protocol to assist SIS—A users in distinguishing situations where there is a high likelihood that support needs have not changed in meaningful ways from situations where there is a reasonable possibility that support needs have changed. The SIS—A Annual Review Protocol was created based on these analyses as well as consideration of conceptual issues associated with support needs assessment. ...
TL;DR: Though receiving broad bipartisan support in passage, some of the statutes have received criticism and will be surveyed and evaluated as to their relative merits and limitations.
Abstract: Since the dawn of prenatal testing in the 1970s, concerns have been raised over its administration to respect a mother's autonomy as well as the expressive critique against those with the tested-for condition. Advances in prenatal testing have made it such that more mothers than ever are given a test result of Down syndrome, yet are not provided the rest of the information recommended by professional guidelines. In response, first federal legislation and then, increasingly, state legislation is requiring that this information be provided to expectant mothers. Though receiving broad bipartisan support in passage, some of the statutes have received criticism. These public policy measures will be surveyed and evaluated as to their relative merits and limitations.