Identifying the Correlates and Barriers of Future Planning Among Parents of Individuals With Intellectual and Developmental Disabilities

2018 ◽  
Vol 56 (2) ◽  
pp. 90-100 ◽  
Author(s):  
Meghan Burke ◽  
Catherine Arnold ◽  
Aleksa Owen
Keyword(s):  
Developmental Disabilities ◽  
Family Members ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Functional Abilities ◽  
Future Planning ◽  
Web Based ◽  
Targeted Interventions ◽  
Policy Practice ◽  
Training And Support

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.

Exploring the Perspectives of Parents and Siblings Toward Future Planning for Individuals With Intellectual and Developmental Disabilities

2019 ◽  
Vol 57 (3) ◽  
pp. 198-211 ◽  
Author(s):  
Chung eun Lee ◽  
Meghan M. Burke ◽  
Claire R. Stelter
Keyword(s):  
Developmental Disabilities ◽  
Family Members ◽  
Future Research ◽  
Adult Offspring ◽  
Intellectual And Developmental Disabilities ◽  
Future Planning ◽  
Research And Practice ◽  
Caregiving Roles ◽  
Future Plans

Abstract Parents often provide the bulk of caregiving supports for their adult offspring with intellectual and developmental disabilities (IDD). Given the longer lives of people with IDD, however, such caregiving roles may transition to siblings. Thus, it is critical to conduct future planning among family members (e.g., parents, siblings) to prepare for the transition of caregiving roles. To this end, we interviewed 10 parent-sibling dyads (N = 20) of people with IDD about long-term planning. Both parents and siblings reported family-related and systemic barriers to developing future plans. Siblings (unlike parents) reported wanting more communication among family members about planning. Implications for future research and practice are discussed.

Individual and Family Correlates of Community Living Options Among Adults With Intellectual and Developmental Disabilities

Inclusion ◽  
2017 ◽  
Vol 5 (4) ◽  
pp. 279-292 ◽  
Author(s):  
Meghan M. Burke ◽  
Chung eun Lee ◽  
Moon Y. Chung ◽  
Kristina Rios ◽  
Catherine K. Arnold ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Independent Living ◽  
Group Homes ◽  
Community Living ◽  
Intellectual And Developmental Disabilities ◽  
Functional Abilities ◽  
Future Planning ◽  
Adults With Disabilities ◽  
The Family ◽  
Family Home

Abstract With recent policy changes and case-law decisions, there are more opportunities for adults with intellectual and developmental disabilities (IDD) to live independently in inclusive settings. It is necessary to identify malleable correlates of community living options to develop interventions to increase inclusive, independent living. To this end, 546 parents and siblings of adults with IDD responded to a national survey. According to parent and sibling report, adults with IDD were more likely to live outside of the family home when the family engaged in future planning, the individual had more informal supports and more functional abilities and had parents with fewer caregiving abilities. Among the 187 adults with IDD who lived outside of the family home, individuals with more problem behaviors and fewer functional abilities were more likely to live in larger group homes (versus independently with or without supports). Further, when the family engaged in more future planning activities, adults with disabilities were more likely to live in a group home (versus independently). When parents had fewer caregiving abilities, adults with disabilities were more likely to live in bigger group homes (versus independently). Implications for policymakers, practitioners, and research are discussed.

The Perceptions of Professionals Toward Siblings of Individuals With Intellectual and Developmental Disabilities

2017 ◽  
Vol 55 (2) ◽  
pp. 72-83 ◽  
Author(s):  
Meghan M. Burke ◽  
Chung eun Lee ◽  
Catherine K. Arnold ◽  
Aleksa Owen
Keyword(s):  
Developmental Disabilities ◽  
Service Delivery ◽  
Delivery System ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Service Delivery System ◽  
Web Based ◽  
Research And Practice ◽  
Positive Experiences ◽  
Sibling Involvement

Abstract Adult siblings of individuals with intellectual and developmental disabilities (IDD) report struggling to navigate the adult disability service delivery system and collaborate with professionals. To date, though, it is unclear how professionals encourage sibling involvement and, accordingly, the facilitators and challenges in working with siblings. For this study, 290 professionals participated in a national web-based survey; participants answered three open-ended questions about ways to involve siblings, positive experiences with siblings, and challenges in working with siblings. Professionals reported person-level and systems-level supports to encourage sibling involvement. Also, professionals reported enjoying working with cohesive families of individuals with IDD and witnessing the benefits that siblings bring to their brothers and sisters with IDD. Challenges in working with siblings included: lack of sibling involvement, systemic barriers, and caregiving burden. Implications for future research and practice are discussed.

Applying for Supplemental Security Income (SSI) for Individuals With Intellectual and Developmental Disabilities: Family and Service Coordinator Experiences

2015 ◽  
Vol 53 (1) ◽  
pp. 42-57 ◽  
Author(s):  
John M. Keesler
Keyword(s):  
Developmental Disabilities ◽  
Critical Role ◽  
New York State ◽  
Family Members ◽  
The United States ◽  
Supplemental Security Income ◽  
Future Research ◽  
Preliminary Evaluation ◽  
Intellectual And Developmental Disabilities ◽  
Application Process

Abstract In the United States, the Social Security Administration (SSA) provides financial benefits through Supplemental Security Income (SSI) to many individuals with intellectual and developmental disabilities (IDD). Family members and service coordinators (SCs) provide a critical role in applying for SSI on behalf of individuals with IDD. The present study uses a street-level lens to understand the implementation of SSI policy from the perspective of family respondents and SCs based upon their experiences with the application process. Using surveys developed from focus groups and interviews with family members and SCs, the study explores parts of the application process that facilitated success and barriers that hindered the procurement of benefits, and also elicited suggestions for improvement of the process. Survey respondents included 122 family members and 122 SCs in the western region of New York State. Findings reflect experiences at the various steps of the application process including initial applications, interviews and assessments, as well as experiences with SSA workers. Despite several significant differences, a general congruence between family respondents and SCs suggests considerable opportunities for improvement. This study provides a preliminary evaluation of a complex process from two different perspectives, with implications for policy, practice and future research.

Empowerment and Resilience in Families of Adults With Intellectual and Developmental Disabilities

2018 ◽  
Vol 56 (5) ◽  
pp. 374-388 ◽  
Author(s):  
Jillian A. Caldwell ◽  
Jennifer L. Jones ◽  
Kami L. Gallus ◽  
Carolyn S. Henry
Keyword(s):  
Developmental Disabilities ◽  
Family Member ◽  
Family Members ◽  
Community Empowerment ◽  
Family Resilience ◽  
Community Living ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
The Family ◽  
Study Support

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.

The Effects of Technology Supports on Community Grocery Shopping Skills for Students With Intellectual and Developmental Disabilities: A Meta-Analysis

2021 ◽  
pp. 016264342198997
Author(s):  
Sojung Jung ◽  
Ciara Ousley ◽  
David McNaughton ◽  
Pamela Wolfe
Keyword(s):  
Developmental Disabilities ◽  
Positive Impact ◽  
Single Case ◽  
Effect Sizes ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Positive Effects ◽  
Analytic Review ◽  
Wide Range ◽  
The Impact

In this meta-analytic review, we investigated the effects of technology supports on the acquisition of shopping skills for students with intellectual and developmental disabilities (IDD) between the ages of 5 and 24. Nineteen single-case experimental research studies, presented in 15 research articles, met the current study’s inclusion criteria and the What Works Clearinghouse (WWC) standards. An analysis of potential moderators was conducted, and we calculated effect sizes using Tau-U to examine the impact of age, diagnosis, and type of technology on the reported outcomes for the 56 participants. The results from the included studies provide evidence that a wide range of technology interventions had a positive impact on shopping performance. These positive effects were seen for individuals across a wide range of ages and disability types, and for a wide variety of shopping skills. The strongest effect sizes were observed for technologies that provided visual supports rather than just auditory support. We provide an interpretation of the findings, implications of the results, and recommended areas for future research.

scholarly journals Twenty Years of Communication Intervention Research With Individuals Who Have Severe Intellectual and Developmental Disabilities

2010 ◽  
Vol 115 (5) ◽  
pp. 364-380 ◽  
Author(s):  
Martha E. Snell ◽  
Nancy Brady ◽  
Lee McLean ◽  
Billy T. Ogletree ◽  
Ellin Siegel ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Literature Review ◽  
Treatment Fidelity ◽  
Intervention Research ◽  
Communication Intervention ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Communication Performance ◽  
Current State ◽  
Communication Interventions

Abstract This literature review was conducted to evaluate the current state of evidence supporting communication interventions for individuals with severe intellectual and developmental disabilities. We reviewed 116 articles published between 1987 and 2007 in refereed journals meeting three criteria: (a) described a communication intervention, (b) involved one or more participants with severe intellectual and developmental disabilities, and (c) addressed one or more areas of communication performance. Many researchers failed to report treatment fidelity or to assess basic aspects of intervention effects, including generalization, maintenance, and social validity. The evidence reviewed indicates that 96% of the studies reported positive changes in some aspects of communication. These findings support the provision of communication intervention to persons with severe intellectual and developmental disabilities. Gaps in the research were reported as were recommendations for future research.

Family Role in the Development of Self-Determination for Youth With Intellectual and Developmental Disabilities: A Scoping Review

2021 ◽  
Vol 59 (4) ◽  
pp. 315-334
Author(s):  
Evan E. Dean ◽  
Anne V. Kirby ◽  
Mayumi Hagiwara ◽  
Karrie A. Shogren ◽  
Deniz Tekin Ersan ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Scoping Review ◽  
Self Determination ◽  
Future Research ◽  
Knowledge Gap ◽  
Intellectual And Developmental Disabilities ◽  
Family Role ◽  
Research And Practice ◽  
Family Perspectives ◽  
Home Context

Abstract The development of self-determination is promoted by supportive contexts during adolescence; families are a key part of this context. In adolescent populations, research suggests families can support self-determination in a number of ways, yet less is known about how self-determination is promoted within families of youth with intellectual and developmental disabilities (IDD). To address this knowledge gap, we conducted a scoping review to examine the existing evidence pertaining to the role families of youth with IDD play in supporting the development of self-determination. A review of 24 publications revealed that existing research has focused on understanding family perspectives on self-determination, but there is a lack of studies investigating how families provide supports for self-determination in the home context for youth with IDD. Additionally, little intervention work has focused on supporting families to promote self-determination. Based on the findings, implications for future research and practice are provided.

Teaching Small Talk: Increasing On-Topic Conversational Exchanges in College Students with Intellectual and Developmental Disabilities Using Remote Audio Coaching

2020 ◽  
pp. 014544552097517
Author(s):  
Brianna Joseph ◽  
Kelly B. Kearney ◽  
Michael P. Brady ◽  
Angelica Downey ◽  
Ayse Torres
Keyword(s):  
College Students ◽  
Developmental Disabilities ◽  
Positive Impact ◽  
Multiple Baseline ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Baseline Design ◽  
Small Talk ◽  
Covert Audio Coaching ◽  
Community Environments

Adults with intellectual and developmental disabilities (IDD) often have deficits in interpersonal skills due to limited social-communication opportunities. Knowing how to engage in “small talk” or simple social conversational exchanges can be beneficial in postsecondary schooling, employment sites, community environments, and social gatherings. Recently, covert audio coaching (CAC) showed a positive impact on increasing conversational exchanges. As the COVID-19 pandemic increased the need for remote delivery tools, we explored the effectiveness of remote audio coaching (RAC) to teach this skill to college students with IDD. We used a multiple baseline design across participants to examine whether RAC might increase on-topic, small talk conversational exchanges. Results demonstrated that RAC effectively increased small talk skills between participants and a confederate. Upon removal of RAC, all participants still performed above their baselines, with two participants maintaining near mastery levels 2 weeks after the intervention was removed. Limitations and future research are discussed.

scholarly journals Experiences That Predict Employment for Students With Intellectual and Developmental Disabilities in Federally Funded Higher Education Programs

2018 ◽  
Vol 42 (1) ◽  
pp. 17-28 ◽  
Author(s):  
Meg Grigal ◽  
Clare Papay ◽  
Frank Smith ◽  
Debra Hart ◽  
Rayna Verbeck
Keyword(s):  
Higher Education ◽  
Developmental Disabilities ◽  
Postsecondary Education ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Institutions Of Higher Education ◽  
Federally Funded ◽  
Demonstration Program ◽  
Gainful Employment ◽  
Postsecondary Program

The Transition and Postsecondary Program for Students with Intellectual Disabilities (TPSID) model demonstration program, funded by the U.S. Department of Education’s Office of Postsecondary Education was implemented initially from 2010 to 2015. During this time, 27 institutions of higher education were awarded grants to develop programs for students with intellectual and developmental disabilities (IDD) to access higher education. TPSID programs were charged with developing model demonstration programs that would lead to gainful employment. In this article, we identify predictors of employment while in the program and at exit for students who completed a TPSID program between 2010 and 2015. Results identified several predictors of employment for students with IDD. Authors share implications for future research and practice gleaned from the analysis.

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