Services and Supports for Aging Individuals with Severe Disabilities and their Families: Special Issue
Guest Editors: Meghan M. Burke and K. Charlie Lakin
From Research and Practice for Persons with Severe Disabilities
In this special issue, the Guest Editors begin by discussing the need for research about services and supports for older adults with severe disabilities and their families. As individuals with severe disabilities are living longer lives, it is critical to closely examine needed services and supports. For the first time, individuals with severe disabilities are outliving their parents. Unfortunately, the formal adult service delivery system is ill-equipped to support aging individuals with severe disabilities. Indeed, the majority of states have waiting lists for services, with some waiting lists lasting decades. In part, as a result of the inadequacy of the adult service delivery system, families continue to fulfil caregiving roles for their offspring with disabilities.
In looking at the need for research about services and supports for older adults with severe disabilities, three key issues should be highlighted:
First, research needs to address integrated supports—formal and natural services and supports—for individuals with severe disabilities. Because of the limited formal adult services, it is necessary to address natural supports (i.e., unpaid support) for aging individuals with severe disabilities.
Second, families need to be considered when providing services and supports to older adults with severe disabilities. Families often provide the most natural support; specifically, families often assume caregiving roles. The role of families is also important in considering person-centered planning for the individual with a disability.
Third, it is important to examine normative outcomes and experiences for older adults with severe disabilities. Typical outcomes and experiences (e.g., employment) are important for all individuals, regardless of whether disability is present. However, given the disparities among adults with (vs. without) severe disabilities, such outcomes and experiences may be especially important for older adults with severe disabilities.
These three issues do not operate in a vacuum. It would be inaccurate to conduct research that only examines integrated supports but neglects the role of the family or the experiences and outcomes of individuals with severe disabilities. In this special issue, five manuscripts are presented. Each study, to some extent, addresses the three issues previously outlined and provides future directions for research and practice. There is hope that the research presented in this special issue will set the stage for more research about this important and here-to-fore understudied population.
Introduction
The Need for Research About Services and Supports for Aging Individuals With Severe Disabilities and Their Families
Meghan M. Burke, K. Charlie Lakin
Articles
Supporting Active Aging for Persons with Severe Disabilities and Their Families Across the Life Course
Michelle C. Reynolds, Susan B. Palmer, Kelli N. Barton
Examining the Relation Between Disability Severity Among Older Adults with Disabilities and Sibling Caregiving
Chung eun Lee, Meghan M. Burke, Catherine K. Arnold
Quality-of-Life Outcomes of Older Adults with Severe Disabilities
Carli Friedman
Aging, Community-Based Employment, Mobility Impairment, and Retirement: National Core Indicators–Adult Consumer Survey Data
Roger J. Stancliffe, Kelly M. Nye-Lengerman, Julie E. D. Kramme
Placing the Preferences of People with Profound Intellectual and Multiple Disabilities At the Center of End-of-Life Decision Making Through Storytelling
Joanne Watson, Hille Voss, Melissa J. Bloomer
Looking Forward: Research to Respond to a Rapidly Aging Population
K. Charlie Lakin, Meghan M. Burke