Pennsylvania

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Pennsylvanias Family Caregiver Support Program
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PROGRAM HISTORY

• Initiation of program as demonstration (1987)
• Passage of legislation
• Statewide implementation (1990)
• Addition of Federal Funding (2001)

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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

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Program Eligibility

• Care receiver must be 60 years of age or have
  chronic dementia
• Care receiver must have at least one ADL deficit

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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

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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

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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

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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

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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

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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

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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

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Program Limitations

• 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

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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

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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

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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
• Pennsylvanias Family Caregiver Support Program
  is demonstrating concepts that may contribute to
  the design of the larger system