1. Consumer-Directed Long-Term Services (Care) Nancy Eustis neustis@umn.eduneustis@umn.edu Humphrey Institute, U. of Minnesota MGS 4-24-09

2. Long-Term Care Policy Context Rebalancing/balancing Cost-containment –Public investment primarily via Medicaid –Medicaid cost control high priority; cost shifting: state to federal, federal to state Maintain or increase private support Less ideologically charged than Social Security or Medicare/health reform

3. CDLTS involves personal care services (personal assistance services) …help with activities of daily living (ADL’s) such as bathing, dressing, and eating, and [help] with instrumental activities of daily living (IADL’s) such as cooking, shopping, and housekeeping.” [Benjamin, 2001] Probably does not include medication management, wound care, injections, catheter insertion, bowel care…

4. Rationale for consumer direction Consumer choice & empowerment 1) Independent living movement (young adults with physical disabilities) 2) Self-Determination (individuals with developmental disabilities) 3) Autonomy (older adults) Cost savings

5. 1. Independent living movement Thinking of themselves as consumers not clients (or patients) developing a support group to help each other live independently a view of independence as having control over one's life rather than functioning without assistance [No Pity, ch. 2]

7. Independent Living Model Consumer direction No physician plan of treatment No nurse supervision Assistant recruited by consumer Assistant trained by consumer Payment to consumer to assistant Accountability of consumer Consumer role Social service benefit

8. Medical Model Provider direction Physician plan of treatment Nurse supervision Aide provides care Aide trained by provider Payment to provider Accountability of provider Patient role Health care benefit

9. Informal Model Family direction No physician plan of treatment No nurse supervision Family / friends provide care No formal training No payment Little accountability Dependent role No government benefit

10. Independent living centers provide Skills training Peer mentoring Self advocacy, self help Group organizing, coalition building I&R, Access to community resources, including housing

11. 2. Self-determination Self-advocacy (“people first”) = 2 nd wave of revolt against professionals (first wave was by parents) Self-determination = strategy for reforming systems of long-term services (Thomas Nerney, NH) –Personal advocate or circle of support –Support broker/case manager –Choice of residence –"Money follows the person“ (allows choice of housing)

12. Example of self-determination Brokered support (Powers at al, 2006—programs in FL & OR): broker assists client to: Define life goals and develop plans to achieve them Access opportunities, resources, and supports to achieve goals Obtain information and education Pay bills and negotiate contracts to employment paperwork Monitor goal achievement

13. 3. Autonomy Older Americans Act: right to “free exercise of individual initiative in planning and managing their own lives” Research on benefits of control, autonomy: “as he becomes unable to carry out certain activities on his own, he progressively loses decisional control over them. His caregivers do not elicit his choices or they ignore them… they annex his decision- making…” (Callopy, 1990)

14. Sciegaj, pg 69 Respondents are seniors

15. CDLTS Variations: What is the benefit? Public pay (Medicaid, state funds; 139 programs in 2001 –Authorized service hours (voucher) –Cash (for service hours, other authorized expenses) LTC insurance (medical model or ?)

16. Examples of consumer directed LTSS programs CA: In-Home Supportive Services: depending on county of residence, contract provider or independent provider; purchase services only; state funding; limited supports MN: Consumer Directed Community Supports: County or medical plan case manager and client plan budget based on expenditures for Medicaid- funded services; flexible spending; use of fiscal intermediary encouraged

17. Examples, continued Cash and Counseling: Cash Grant for needed services; provision of counseling; Fiscal Intermediary available ME: Consumer selects, supervises, and oversees payments of provider but contracted intermediary is employer of record Veterans: Housebound Aid and Attendance Allowance Program– cash allowance

18. Arguments for consumer direction Responsive to client; more flexible (not just services) Increase provider supply Cost-effectiveness Consumer satisfaction; quality of life No ill affects on health, safety, or liability

19. CA study IP advantages ethnic and linguistic compatibility of client and worker, less worker turnover, and provision of more unpaid assistance by client employed workers.

20. CA study: agency advantages greater ease in arranging for services, majority report being able to rely on the agency to provide back up help if the regular worker is unavailable.

21. Cash & Counseling findings More likely to be getting paid services Fewer reported unmet needs Hi satisfaction with services More satisfied with their lives No more adverse events; in 1/3 of comparisons treatment group better off

22. Potential problems of consumer directed LTS Who is capable to self direct? Advisability of hiring family members Assuring quality and public accountability without professional oversight Worker fairness Cost-effectiveness Availability of providers

23. Who can self direct? Use of authorized representatives widely accepted for persons with cognitive impairment (MR/DD, dementia) Availability of supports (e.g. peer support, registries, back up services) facilitate self- direction Self-direction programs becoming available for persons with mental illness

24. What about self direction for seniors? Most research findings support self- direction by seniors Young old and those who are medically stable more likely to self direct CA study: Young and old equally satisfied, equally prefer training worker Younger report more unmet needs, more empowerment; seniors more isolated

25. Self-direction for seniors Cash and counseling study: –no major differences in outcomes by age –Impacts on younger adults tended to be larger except in New Jersey Professionals and case managers have typically been skeptical of self direction by seniors (may be changing)

26. Paying family members Ability to pay family members has become an important component of consumer directed care, especially for seniors In my experience, family is important backup resource What are the pros and cons?

27. Advantages of paying family caregivers Workforce shortages Provides income to caregivers and may free up their time Familiarity with care needs Preferred by some

28. Disadvantages of hiring family members, continued Diverts attention from improving the work force May reduce amount of unpaid care: California findings – no; cash and counseling findings – yes (purchase of supplies instead) Gender and income inequalities Elder abuse?

29. Quality assurance Agency-provided care offers professional oversight No evidence of significant differences in/health & safety outcomes in available studies Supportive services can be important

30. Additional issues Payroll taxes and workers compensation insurance Worker issues –Caregiver stress –Lack of health insurance, sick leave, vacation and other benefits –Isolation

31. Intermediary Service Organizations (ISOs) “…acts as interagent between CD-PAS program & eligible consumer for purposes of disbursing public funds and assisting consumers with tasks associated with the employment of [workers]” (Flanagan & Green) –Ensure compliance with legal requirements… [wage & tax laws] –Offer supportive services to consumers

32. ISO: Administrative/fiscal services disbursing public funds, withholding and filing employment taxes brokering benefits, preparing and disbursing payroll checks and processing employment-related documents including the INS Form I-9, the IRS Form W-2, and timesheets.

33. ISO: Supportive services training related to hiring, firing and supervising attendants managing employment taxes and payroll, assisting consumers in obtaining temporary or emergency.back-up. services providing peer counseling, conducting and/or assisting consumers with checking attendant references and/or performing criminal background checks, client assessments providing case management.

34. Key Operational Issues for State CD-PAS Programs Using Intermediary Service Organizations By Susan A. Flanagan, M.P.H. & Pamela S. Green, J.D. Prepared for: U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, Division of Aging and Long-Term Care Policy