Outcome Measurement Program Case Studies
The Home and Community-Based Services (HCBS) program supports more than three million people with disabilities or who are aging to live in their communities. The Centers for Medicare and Medicaid Services (CMS) funds the HCBS program in partnership with state governments. HCBS enables people who need help with daily activities to live at home rather than in a nursing home, developmental center, hospital, or other institution. The HCBS program has shown steady growth since its inception in 1981. The share of federal funding for HCBS ($56.5 billion) exceeded spending for the federal share of institutional LTSS for the first time in 2013 (Eiken et al., 2016). Consumer demand drives the increase in the usage of community-based LTSS. Community-based supports offer a desirable alternative to institutional life by helping people stay closer to friends and family and accessing what the community has to offer (Barrett, 2014).
The cornerstone of the HCBS mission is to help LTSS users enjoy the same access and opportunities for social, civic, career, educational, and home life as their peers without disabilities. The importance and scope of this mission and its publicly funded status create an imperative for the responsible government agencies, advocates, and the public to obtain clear and accurate information about the program’s impact through robust measurement and evaluation programs.
Current research indicates that HCBS consistently falls short of its mission of supporting adequate community access and opportunities to participate in community life. These sources identify that HCBS users are more isolated, under-employed, and lacking in control over their daily lives when compared with people not receiving services (Butterworth et al., 2015; Heller et al., 1999, 2002; Tichá et al., 2012). Along with addressing these shortcomings and improving quality of life outcomes for people in HCBS, better measures of accountability are essential to monitoring improvement in outcomes as program capacity, and the population in the U.S. requiring services continue to grow.
CMS significantly revised its expectations for HCBS providers in 2014. Program rules regarding HCBS settings and practices were revised to assure that supports become more person-centered and that people enjoy more choice and control in their day-to-day lives. States have until March of 2022 to ensure that all existing and new HCBS funded supports are fully aligned with the new requirements (CMS, 2017). To evaluate whether or not the 2014 rule changes improve outcomes, measuring HCBS outcomes of people with disabilities is essential. Currently, it is difficult to gather useful information about program challenges systematically, because appropriate HCBS “outcome measurement” tools and approaches are not well established in much of the country. Measurement data is not routinely gathered, coordinated, and tracked across settings and over time in all locations in a comparable manner.
This fragmented measurement landscape is further complicated by the difficulty of reliably measuring the many complex and evolving factors that comprise quality in community life. This complexity derives mainly from the reality that individuals have different preferences and personal goals, live and participate in diverse community contexts, and view life through a variety of psychological, cultural, family, and linguistic lenses. Given this complexity, quality in community living must be conceptualized as having many dimensions. These dimensions include where and with whom one lives; preferences about work or other daily activities; opportunities to gather with others in churches, clubs, or other group activities and contribute to community life; the quality of relations with others; the status of physical, emotional and spiritual well-being; and, numerous different dimensions.