Pennsylvania’s Family Caregiver Support Program

1. Pennsylvania’s Family Caregiver Support Program

2. Initiation of program as demonstration (1987) Passage of legislation Statewide implementation (1990) Addition of Federal Funding (2001) PROGRAM HISTORY

3. Funding and Organization • Funded from state general fund & O.A.A. • Current budget: $17.8 million/year • Administered at state level by PA Department of Aging (state unit on aging) • Administered locally by statewide network of 52 area agencies on aging

4. Program Eligibility • Care receiver must be 60+ years of age or have chronic dementia • Care receiver must have at least one ADL deficit

5. Core Program Benefits • Assessment and care management • Benefits counseling • Caregiver education and training (including caregiver support groups) • Core program benefits are available to all eligible participants as needed with no cost ceiling and no consumer cost sharing

6. Financial Reimbursement Benefits • Up to $500 per month for services and supplies (caseload average must not exceed $300/mo). • Up to $2,000 during the life of the case for home modifications and assistive devices • Relatives (including primary caregiver) may be reimbursed for expenses, but NOT paid for services rendered • Financial reimbursement benefits are subject to a sliding reimbursement scale

7. Sliding Reimbursement Scale • Families with incomes at or below 200% of poverty may receive full benefits (if needed) • Families with incomes between 200% and the eligibility ceiling of 380% of poverty receive declining reimbursements in 10% decrements as income increases in increments of 20% of poverty

8. Examples of Sliding Reimbursements • A family at income of 298% of poverty falls into the 50% reimbursement range. Maximum reimbursement is half of actual expenses, OR $250 per month for services and supplies and $1,000 for life of case for home modifications and/or assistive devices, whichever is less • A family with income of of 302% of poverty receives the lesser of 40% of actual expenses or $200/month and $800/case

9. Actual Utilization Patterns • Program serves about 4,500 families at any given time, and about 8000 unduplicated families per year • Program costs an average of about $3,000 per family for a full year of stay in the program • Average length of stay in the program is just above 8 months

10. Actual Utilization Patterns (Continued) • Most care receivers have multiple ADL deficits and some are nursing facility clinically eligible • Most caregivers are advanced in age and female, and some have IADL deficits • More than 80% of participating families have incomes below 200% of poverty and are therefore fully eligible for benefits

11. Program Strengths • Ideal for functional families and other strong, voluntary caregiving relationships • Allows the family autonomy to structure the caregiving environment with public $$$ merely supporting and filling gaps • Costs run about 10% of nursing home care, about 20% of our Medicaid waiver, and about 1/2 of the cost of standard aging in-home services for consumers with similar needs

12. ProgramLimitations • Low benefit ceilings unsuited to families unwilling or unable to provide the bulk of care informally • “Niche” program which can be an important part of the HCBS continuum, but not the entire answer

13. Program Impacts • Allows more efficient use of public resources for a sub-set of the service population, leaving more for consumers in less supportive living environments • Minimizes public interference into the affairs of functional families, while meeting consumer needs • Serves as a laboratory for consumerism which has been gradually incorporated into traditional aging home and community based services

14. Interface Issues • Many consumers have formal service needs that go beyond the FCSP benefit ceilings, yet live with very supportive caregivers • The availability of primary in-home care providers using traditional models is diminishing • Medicaid waiver standards tend toward traditional models which can restrict who provides care and when it is provided

15. The 21st Century Challenge • Demographic trends predict the financial necessity for maximizing the use of informal supports in community based long term care • Flexibility in program design which respects family autonomy will be crucial • Pennsylvania’s Family Caregiver Support Program is demonstrating concepts that may contribute to the design of the larger system