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 to receive in-home support rather than living 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 Long Term Services and Supports (LTSS) for the first time in 2013 (Eiken et al. 2016). Consumer demand, including the desire of people with disabilities and those who are aging to live in their communities, 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 while HCBS recipients generally have better outcomes that people living in institutional settings, there are still improvements to be made that can lead to community access and opportunities to participate in community life. These sources identify that HCBS users experience isolation, under-employment, and lack in control over their daily lives (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 both program capacity, and the population in the U.S. requiring services, continue to grow.
CMS finalized regulations for several HCBS authorities in 2014. The regulations significantly revised expectations for HCBS, particularly by identifying the necessary attributes of community settings, establishing expectations for person centered planning, and setting forth expectations regarding conflict of interest in HCBS CMS’ requirements for HCBS settings seeking to assure that supports are genuinely available in home and community – not institutional – settings, that services are person-centered, designed in consideration of what is “important to” and “important for” the individuals supported, and so that people enjoy more choice and control in their day-to-day lives. Most of the provisions of the final regulations, such as those related to person-centered planning and conflict of interest, among others, became effective upon finalization on March 17, 2014. For those provisions related to the settings in which HCBS may be provided, CMS established a transition period – recently extended until March 17, 2023 - to assure that all existing HCBS-funded programs are fully aligned with the new requirements. New services implemented after the 2014 release date were expected to meet the conditions of the rule as of the date the new services were implemented.
The regulations published in 2014 are intended, in totality, to improve individual autonomy and choice of people with disabilities. As such, 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 for all HCBS recipient populations. Measurement data is not routinely gathered, coordinated, and tracked across settings and over time across states in a comparable manner. The exception is the NCI®-IPS survey given to LTSS recipients with intellectual or developmental disabilities (IDD) that is used in over 40 states on a regular basis (the number of states that participate in a given year varies).
This fragmented measurement landscape is further complicated by the difficulty with reliably measuring the many complex and evolving factors that comprise quality of 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.