Self-Direction in Older Americans Act Programs

1. Self-Direction in Older Americans Act Programs Illinois Governor’s Conference on Aging December 8, 2011 Chicago, IL

2. Audience Questions • How are you encouraging consumer direction? • How do you encourage consumer choice?

3. Title I, Declaration of Objectives for Older Americans – Sec. 101 10) Freedom, independence, and the free exercise of individual initiative in planning and managing their own lives, full participation in the planning and operation of community based services and programs provided for their benefit, and protection against abuse, neglect, and exploitation.

4. Brief Comparative History of LTC Person Centered/Rebalancing

5. Title I, Definitions - Section 102 (46) The term ‘self-directed care’  means an approach to providing services (including programs, benefits, supports, and technology) under this Act intended to assist an individual with activities of daily living, in which – (A) such services (including the amount, duration, scope, provider, and location of such services ) are planned, budgeted, and purchased under the direction and control of such individual; (B) such individual is provided with such information and assistance as are necessary and appropriate to enable such individual to make informed decisions about the individual’s care options; (C) the needs, capabilities, and preferences of such individual with respect to such services, and such individual’s ability to direct and control the individual’s receipt of such services, are assessed by the area agency on aging (or other agency designated by the area a agency on aging) involved;

6. Title I, Definitions - Section 102, cont. (D) based on the assessment made under subparagraph (C), the area agency on aging (or other agency designated by the area agency on aging) develops together with such individual and the individual’s family, caregiver (as defined in paragraph (18)(B)), or legal representative – (i) a plan of services for such individual that specifies which services such individual will be responsible for directing; (ii) a determination of the role of family members (and others whose participation is sought by such individual) in providing services under such plan; and (iii) a budget for such services; and (E) the area agency on aging or State agency provides for oversight of such individual’s self-directed receipt of services, including steps to ensure the quality of services provided and the appropriate use of funds under this Act.

7. Basis for System Change and Consumer Direction Olmstead, 1999 – right to services in least restrictive environment Consumer direction research, e.g. cash and counseling, show greater quality of life and services States with increased use of HCBS have decreased overall growth of long term care costs

8. http://www.kff.org/medicaid/upload/2186-08.pdf, accessed 11.14.11

10. What is the level of utilization of consumer direction? Data/info from SUA and/or CMS websites unless otherwise noted. (1) http://www.nasua.org/resources/documents/StatePerspective2009_000.pdf, accessed 5/10/10, * AW updates as of 5/12/10 10

13. How to implement self-direction in OAA programs? Challenges: Reporting – need to report 3B, C1, C2, D and E expenditures separately Service requirements: meals meet DRIs, matching funds may be going to specific providers, etc. Redirection of funds from existing programs/models; will be able to sustain existing programs/models? Paradigm shifts in case manager role, approaches to risk, etc.

14. How to implement self-direction in OAA programs? Opportunities Piggyback on already existing programs (e.g., Medicaid waiver/services for other populations) Look for other ways to increase consumer choice such as Purchase of Service/All Willing & Qualified (procurement v. certification) /Rolling Procurement /Voucher models Look for other opportunities to implement self-direction as way of controlling costs in tight budget times, with a burgeoning aging population and while increasing consumer satisfaction (consider doing a cost analysis to help make your case and/or to see if you would actually be able to serve more clients by moving toward self-direction) Incremental approaches (look within 3B, C, D or E programs); new SPR has Cash & Counseling

15. Steps toward self-direction Incremental approaches: Increasing choice of providers Increasing menu of services: may consider “Flex Service” type of approach Increasing choice & control over when services are delivered, etc. via use of vouchers

16. 45 CFR Part 92.36 relating to procurement AoA does not “approve” procurement methodologies Check with the governing sections of your state laws and regulations and your state auditor

17. State &/or AAA Level Issues State Procurement standards, SUA guidance, administrative rules, assessment & reporting tools, abilities & requirements, etc. State & AAA – budgeting, intake, capacity, quality assurance, staff training, emergency/back-up plans Note: New AoA SPR Reporting Requirements being implemented to accommodate self-direction – what does this mean for your specific State or AAA level system?

18. Fiscal Management Services May be included as a OAA service (reported as Title III-B, D or E – e.g., Under Other or Supplemental Services in the SPR, depending on the types of services associated with the FMS) FMS may be provided directly by the AAA (with SUA approval) or contracted/granted out like any other Title III-B service

19. AoA Initiatives supporting consumer-direction CLP: This initiative encourages the Aging Services Network to modernize and transform the funding they receive under the Older Americans Act, or other non-Medicaid sources, into flexible, consumer-directed service dollars. VDHCBS: The VDHCBS program will provide veterans the opportunity to self-direct their long-term supports and services that enable them to avoid institutionalization and continue to live independently at home. May be elements in CIAIP, ADSSP and Lifespan Respite grants

20. Resources National Resource Center for Participant-Directed Services: http://www.bc.edu/schools/gssw/nrcpds.html E.g., “Developing & Implementing Participant Direction Programs & Policies: A Handbook” NASUAD Report - State of Aging: 2009 State Perspectives on State Units on Aging Policies and Practices: http://www.nasuad.org/documentation/nasuad_materials/StatePerspective2009_000.pdf

21. Contact Information U.S. DEPARTMENT OF HEALTH & HUMAN SERVICES - ADMINISTRATION ON AGING, Regions V & VII Amy Wiatr-Rodriguez, Aging Services Program Specialist amy.wiatr@aoa.hhs.gov 312.886.8536 www.aoa.gov

22. IDOA Perspectives on Consumer-Direction in Older Americans Act Programs State of Illinois

23. Contact Information Illinois Department on Aging Betsy Creamer, Planning Supervisor Betsy.Creamer@illinois.gov 217/524-7944 http://www.state.il.us/aging/

24. Consumer-Directed Respite Experience of Area Agency on Aging of Southwestern Illinois

25. Consumer Directed RespiteProgram Design Caregiver is assessed by a care manager $100 to Caregiver directly in reimbursement Caregiver hires whomever they want, as long as they are over 18 and do not live in the same house Flexible for case-by-case exceptions Area Agency handles administration

26. Program History • Program began January 1, 2003 • December 2002 served 13 people, 132 hours @ $13.00 per hour • January 2003 served 35 people, 350 hours @ $6.55 per hour (average) • By September 2003, serving 84, 1,194 hours @ $6.35 per hour (average) • In ten months • Hours of utilization up 800% • Cost per hour down 51% • Increased service to 71 people, 546%

27. Caregivers • 2002 – 39 (Prior to Redesign) • 2003 – 143 • 2011 - 162

28. Hours of Respite Provided • 2002 – 969 (Prior to Redesign) • 2003 – 8,202 • 2011 – 15,920

29. Challenges and Surprises Challenges Surprises Not using the entire $100 Higher than expected use of formal agencies High rate of and reasons for attrition Death (52) Nursing home placement (30) • Perceived Misuse • Taxes • Administration • Budgeting • Monitoring usage • Caregiver calls about payment

30. Demographics of Caregivers Age range of Caregivers 38-96 • 30% 38-59 • 8% 80+ • 62% between the ages of 60-79 Relationship of caregiver • 52% Spouse • 35% Daughter • 13% Son

31. Unsolicited Caregiver Quotes “My husband has Parkinson’s and I’m able to afford an extra day of day care every week. This is allowing him to stay at home instead of going to a nursing home.” “Thanks again, very much. I’m able to do the honey-do list, that my honey isn’t able to do. I have enjoyed being able to visit with my girls, instead of running every time they come or giving them lists to do.” “My mother, Agnes, passed away on January 21, I want to thank you for the respite service. The program gave me some time I needed and even help here the last few days Mom had here at home. Thank you.” 83% of caregivers using respite said in a survey the program allowed them to care for their loved one at home instead of Nursing Home placement

32. Contact Information Area Agency on Aging of Southwestern Illinois Joy Paeth, CEO jpaeth@answersonaging.com 1-800-326-3221 www.answersonaging.com

33. Questions?