Abstract

Objective: Evidence-based practices and programs are quickly becoming preferred for funding by the US federal government over non-evidence based long-term services and supports (LTSS) models and interventions. In 2016, the federal government raised its standards for levels of evidence required for an intervention to qualify as evidence-based. At the same time, there has been a dramatic shift in requirements for increasing access to home and community-based care for persons with disabilities of all ages and reducing institutional care placement. Thus there is a demand for more and better evidence-based interventions at the same time there is a much wider domain of care settings and options available. Additionally, this increased demand comes at a time when the population of persons with disabilities is diversifying, particularly in later life, as the numbers of adults aging with early and mid-life onset of disability are living longer.

This presentation examines the depth and breadth of the evidence base relating to LTSS and persons entering later life with lifelong disability or disability acquired in early or mid-life. It reports the findings of a scoping review that aimed to identify the amount, type, and nature of the peer-reviewed research evidence that directly focused on aging with long-term disability populations and long-term services and supports (LTSS).

Data and methods: Data collection included a systematic search of electronic databases including PubMed, Web of Science, SocIndex, PsychIndex, CINAHL, and the Cochrane Database of Systematic Reviews. Inclusion criteria were a studies in English, study samples that consists of adults 45 and older with disability or impairment onset prior to age 60, and study aims and/or focus related to LTSS. Studies were excluded if they were primarily bio-medical. Articles published between 1995 and 2015 were reviewed.

Results: Results indicate that the evidence base related to LTSS and persons aging with long-term disability is relatively small with most articles addressing issues of caregiving, dementia, life transitions, and health and wellness. More research literature exists relating to persons aging with intellectual disability than persons aging with physical disability. With the literature, there were few intervention studies or evidence-based practices identified. Significant gaps in the literature suggest the need to focus efforts on building a stronger evidence base to support the development of LTSS practices for persons aging with long-term disabilities.

Policy implications: Given the federal government’s shifting emphasis on funding evidence-based practice in LTSS, there is a need to build a stronger evidence base to support adequate and effective LTSS provision to adults aging with disabilities. In not doing so, persons aging with disabilities are likely at risk for poorer health and wellness outcomes than their peers who are aging into disability (acquiring sustained disability for the first time in later life) and are the more traditional research population for evidence-based practice with older adults. Given the many current national initiatives to improve LTSS outcomes, to support aging in place and community-based living, and to address rising LTSS costs, more LTSS research that includes persons aging with disability should be undertaken.