A Pilot Study of a Future Planning Program for Siblings of People With Intellectual and Developmental Disabilities

2021 ◽  
Vol 59 (1) ◽  
pp. 70-83
Author(s):  
Chung E. Lee ◽  
Meghan M. Burke
Keyword(s):  
Developmental Disabilities ◽  
Family Communication ◽  
Qualitative Data ◽  
Disability Services ◽  
Intellectual And Developmental Disabilities ◽  
Future Planning ◽  
Attrition Rates ◽  
Participant Satisfaction ◽  
Caregiving Roles ◽  
Step Program

Abstract Given the increased longevity of people with intellectual and developmental disabilities (IDD), future planning programs are becoming increasingly common. However, although siblings are likely to fulfill caregiving roles for people with IDD, siblings have not been included in future planning interventions. The purpose of this study was to evaluate the outcomes and feasibility of the Sibling Training for Early future Planning (STEP) program. Using quantitative and qualitative data, 18 siblings of individuals with IDD participated in the study. After completing the STEP program, participants demonstrated significantly improved feelings of empowerment, disability connectedness, family communication, and knowledge of adult disability services. The STEP program was also feasible given high attendance, low attrition rates, and high participant satisfaction. Implications for research and practice 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.

Family Caregivers of Adults With Intellectual and Developmental Disabilities: Outcomes Associated With U.S. Services and Supports

2014 ◽  
Vol 52 (2) ◽  
pp. 147-159 ◽  
Author(s):  
Heather J. Williamson ◽  
Elizabeth A. Perkins
Keyword(s):  
Developmental Disabilities ◽  
Family Caregivers ◽  
Service System ◽  
Care Delivery ◽  
Intellectual And Developmental Disabilities ◽  
Physical Health Outcomes ◽  
Services And Supports ◽  
Caregiving Roles ◽  
Mental And Physical Health ◽  
The U.S

Abstract Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver outcomes and their association with existing services and supports for family caregivers of adults with IDD. Twenty-four articles were compiled using the PubMed, Web of Knowledge, PsychInfo, and CINAHL databases. Studies report economic, mental, and physical health outcomes from caregiving roles. The need for comprehensive caregiver assessment is discussed. Understanding and responding to the changing needs of family caregivers is vital to the U.S. disability service system to effectively prioritize formal resources and services.

Predictors of Future Caregiving by Adult Siblings of Individuals With Intellectual and Developmental Disabilities

2012 ◽  
Vol 117 (1) ◽  
pp. 33-47 ◽  
Author(s):  
Meghan M Burke ◽  
Julie Lounds Taylor ◽  
Richard Urbano ◽  
Robert M Hodapp
Keyword(s):  
Developmental Disabilities ◽  
Life Expectancy ◽  
Intellectual And Developmental Disabilities ◽  
Adult Siblings ◽  
Caregiving Roles ◽  
Caregiving Responsibility

Abstract With the growing life expectancy for individuals with intellectual and developmental disabilities, siblings will increasingly assume responsibility for the care of their brother or sister with intellectual and developmental disabilities. Using a 163-item survey completed by 757 siblings, the authors identified factors related to future caregiving expectations. Siblings expected to assume greater caregiving responsibility for their brother or sister with disabilities if they were female, had closer relationships with and lived closer to their brother or sister with intellectual and developmental disabilities, and were the lone sibling without a disability. Siblings who expected to assume higher levels of caregiving had parents who were currently more able to care for their brother or sister with disabilities. With a better understanding of who intends to fulfill future caregiving roles, support can be provided to these siblings.

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.

Sign in / Sign up

Export Citation Format

Share Document