1. Consumer-Directed Home Services for Seniors Marisa Scala Institute for the Future of Aging Services Washington, DC Jerry Lindsay Northwest Paralyzed Veterans of America Enumclaw, WA

2. Structure Of Session n Background n Policy and programs n Current initiatives n Consumer perspective

3. Defining consumer direction n Consumer direction represents both “a philosophy and orientation” to service delivery –Philosophy: emphasis on consumer choice –Practice: decision-making and management of services; more than just hiring and firing workers

4. Defining personal assistance services n “Tasks…that individuals would normally do for themselves if they didn’t have a disability” (Litvak, Zukas & Heumann, 1987) n Includes: –personal care (Activities of Daily Living) –instrumental activities of daily living –communication –paramedical services

5. Barriers to consumer direction n Overarching goal of home services: to keep people out of nursing homes n Bias of the field toward safety and protection n Professional training n Balancing autonomy and risk n Concerns about quality assurance (i.e. fraud and abuse)

6. Language differences (Aging & disability communities) n Home care vs. personal assistance services n Consumer direction vs. self- determination n Home care workers (or aides) vs. personal assistants (or attendants)

7. Other differences (Aging & disability communities) n Goals of services differ (full participation in society vs. staying out of a nursing home) n Consumer direction and choice not as widespread in aging services n Movement has come from professionals more so than seniors themselves

8. Why consumer direction? Why now? n More emphasis on consumer preferences and autonomy n Concerns about quality of services n Worker shortages n Cutting costs n Baby Boomers “coming of age” n Legislation (MiCASSA bill) n Olmstead vs. L.C. decision

9. Trends in consumer direction n Consumer direction still “new” to aging services n Some joint efforts between aging and disabilities communities n Growth in Medicaid Personal Care Option (32 states) n Introduction of MiCASSA bill n Olmstead vs. L.C. & E.W.

10. Trends in consumer direction (continued) n Development of National Institute of Consumer-Directed Long-Term Services n National Council on Aging survey

11. National Council on Aging survey n Survey of administrators in aging, Medicaid, MR/DD, vocational rehab. n Original survey 1996, resurveyed 1999 n Increase in number of programs: 103 in ‘96 to 185 in ‘99 n Increased awareness of consumer dir. n Decreased use of agency providers; increased use of family as providers n Barriers largely policy-related

12. Models n Self-directed case management (agency with choice) n Fiscal intermediary n Supportive intermediary n Direct pay (Cash and counseling) n Spectrum intermediary services

13. Current initiatives n Robert Wood Johnson Foundation initiatives –Cash and Counseling Demonstration Program –Independent Choices Program n Other local programs showing interest –Council on Aging of Southwestern Ohio levy program

14. Independent Choices projects n Promoting State Policy Reform to Enhance Consumer Direction (DC) n Consumer Support Training Grant (Minnesota) n Elder Preferences and Consumer Direction (Brandeis University, MA) n Making Hard Choices: Respecting Both Voices (California)

15. Independent Choices projects (continued) n Incorporating Independent Living Philosophy into Home Health Agencies (Illinois) n Consumer-Directed Personal Assistance for the Cognitively Impaired (New York) n Consumer Direction in Ohio’s PASSPORT Program

16. Where do we go from here? n Continued growth of the field n Aging and disability communities need to work together n More input from consumers n Policy changes

17. Where do we go from here? (continued) n Enhancing consumer direction for seniors –training (consumers & staff), supportive intermediary services, flexibility to accommodate surrogate decision-makers n Targeted research –consumer satisfaction, worker satisfaction, quality of services, costs (financial & administrative)