By Carli Friedman, CQL Director of Research
The Home and Community Based Services (HCBS) settings rule prioritizes person-centered planning; it also requires services be driven by peoples’ preferences and goals (Centers for Medicare and Medicaid Services, 2014). The Centers for Medicare and Medicaid Services (CMS) explains, HCBS must “optimize autonomy and independence in making life choices; and facilitate choice regarding services and who provides them” (Centers for Medicare and Medicaid Services, 2014, p. 1).
Quality person-centered services not only aim to ensure people have control over their own lives, but promote personal outcomes (Center for Medicaid and CHIP Services, n.d.). Rather than placing people into slots, services should be selected by people and their goals; “services and supports are not outcomes themselves; rather, they facilitate outcomes. They are processes that enable people to achieve their goals” (The Council on Quality and Leadership, 2017, p. 74).
For these reasons, the aim of this study was to explore the impact of people with disabilities choosing their services on their quality of life. To do so, we analyzed Personal Outcome Measures® interviews from approximately 1,100 people with disabilities.
People Choose Their Services: Outcome Present
Findings revealed only a fraction (31%) of people with disabilities chose their services (outcome present). While people with disabilities were more likely to select their community services than other types of services (i.e., home, employment, health, case management), a significant number of people with disabilities did not select any of these services (see figure below).
Percent of People Who Selected These Services
Furthermore, it was not uncommon for people with disabilities to not select their providers (see figure left below) or not select their staff (figure right below)
Percent of People
Who Selected These Providers
Percent of People
Who Selected These Staff
The fact that people with disabilities often did not choose their services not only goes against person-centered practices, but is also problematic because our study found a relationship between choosing services and almost every other area of quality of life. People with disabilities who chose their services were significantly more likely to: be safe, be free from abuse and neglect, have best possible health, have continuity and security, exercise rights, be treated fairly, be respected, use their environments, live in integrated environments, interact with other members of the community, participate in the life of the community, have friends, have intimate relationships, decide when to share personal information, perform social roles, choose where and with whom to live, choose where to work, choose personal goals, and realize personal goals. “Our findings revealed that when people with disabilities are able to choose their services, the impact can be widespread. By ensuring people with disabilities are able to choose their services, organizations are not only facilitating self-determination, but, ultimately, improving people with disabilities’ quality of life” (Friedman & VanPuymbrouck, 2018).
- Center for Medicaid and CHIP Services. (n.d.). System-wide person centered planning. Retrieved from https://www.medicaid.gov/medicaid/hcbs/downloads/system-wide-person-centered-planning.pdf
- Centers for Medicare and Medicaid Services. (2014). Fact sheet: Summary of key provisions of the 1915(c) Home and Community-Based Services (HCBS) waivers final rule (CMS 2249-F/2296-F). Retrieved from http://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-and-supports/home-and-community-based-services/downloads/1915c-fact-sheet.pdf
- The Council on Quality and Leadership. (2017). Personal Outcome Measures®: Measuring personal quality of life (3rd ed.). Towson, MD: Author.
- Friedman, C. & VanPuymbrouck, L. (2018) The impact of people with disabilities choosing their services on quality of life outcomes. Disability and Health Journal, online ahead of print.