SSR-1: A Systematic Scoping Review of the Literature

The purpose of this project is to identify gaps in the research literature regarding barriers to remaining in the community for people with severe disabilities age 18-65 (versus senior citizens).

Background

Living and participating in the community is recognized as the “gold standard” of outcome measurement in disability and rehabilitation. Still, institutionalization in congregate care facilities, nursing homes, and other health and community institutions threatens continuity of community living for many adults with disabilities under age 65.

NIDRR recognizes the importance of community living in its Long Range Plan and centers for independent living (CILs) increasingly acknowledge deinstitutionalization of people with disabilities as a “fifth core service.”

Reasons for institutionalization include personal factors, such as lack of advocacy skills or incontinence; environmental factors, such as lack of qualified personal attendants and inadequate appropriate health care services; and policy factors (an environmental subset) such as a Medicaid bias requiring individuals to enter institutions to receive needed care.

The issue is complicated by the frequent intertwining of personal and environmental factors: for example, an individual can manage incontinence using technology, but funding for technology may be disputed by health care providers. Some institutionalization risk factors for working-aged people with disabilities may be similar to those affecting the aging population, but others may be different.

It is hypothesized that most seniors have extensive experience living in the community, established social relationships, and more resources due to increased years of work. In contrast, adults with disabilities under age 65 often experience attitudinal, physical and programmatic barriers to community living; lack of opportunity to form social relationships; and limited employment prospects.

Emphasis on deinstitutionalization of people with disabilities was heightened by the Supreme Court’s decision in Olmstead v. L.C., which found that the Americans with Disabilities Act Title II mandate of services provided in integrated settings was not being implemented in many communities. Yet, despite the importance of deinstitutionalization and its potential life-changing and often irreversible effects for many people with disabilities, there has been no systematic investigation of the factors that put community-living individuals at risk for institutionalization.

Purpose of the Review

Consolidating and summarizing current knowledge and identifying gaps in the literature regarding risk factors for institutionalization can assist in establishing a baseline and setting the agenda for further research. A systematic scoping literature review can fill this void.

People with disabilities and their advocates will be involved in shaping the review to ensure that it is relevant and complete.

Anticipated Outcomes

We expect to produce a review that identifies risk factors for institutionalization of working-aged people with disabilities and facilitates increased capacity to target research on this topic. The systematic scoping review results will be provided to other RTC/CL researchers to inform their interventions in subsequent years of the Center’s work, and will be made available to other disability researchers.

The review will also be written up in brief, snapshot format for use by consumer advocates, advocacy organizations, and policy makers in advocacy efforts and policy formation.

More Information on the Design of the Review

Studying Risk Factors for Institutionalization; Study Design and Procedures

Project Investigators:

Glen White, PhD, Megan O’Brien, PhD, Dot Nary, PhD, and Amalia Monroe-Gluck, MS 

Advisory Panel

The Advisory Panel and Consultants for this review are people with expertise in both the content area and the procedures for systematic scoping reviews. The participation of these advisors will ensure both rigor and relevance in the project.

These individuals provide a broad range of expertise in the systematic review process and in implementing Participatory Action Research procedures. Findings from this work will identify gaps in the literature and set a baseline for research in this area. 

Advisors

Dot Nary: University of Kansas

Jean Ann Summers: University of Kansas

Marsha Katz: University of Montana Rural Institute

John Westbrook: Disability Research to Practice Program

Consultants

Jana Peterson: University of Missouri-Kansas City

Tom Seekins: RTC on Disability in Rural Communities