Policies and Programs to Support Family Caregivers

1
Policies and Programs to Support Family Caregivers

• Susan Reinhard, RN, PhD
• Senior Vice President,
• AARP Public Policy Institute
• New York Academy of Medicine
• March 11, 2008

2
Background

• Informal support is the most important source of
  assistance for people of all ages with
  disabilities
• Must begin with consideration of family
  caregivers, the backbone of LTC

3
Effects of Caregiving onLong-Term Care System

• Caregiving can help delay or prevent the use of
  nursing home care
• Help from children with basic personal care
  reduces the likelihood of people age 70 or older
  with disabilities entering a nursing home over a
  2-year period by 60 percent.
• Caregiver stress is a strong predictor of nursing
  home entry lowering stress could further reduce
  institutionalization.
• Family caregivers are irreplaceable
• In 1999, about 2/3 of older people with
  disabilities receiving care in the community
  relied solely on informal care fewer than one in
  ten relied solely on formal care.
• There are not enough long-term care workers to
  replace the contributions of family caregivers.

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Caregivers as bothClients and Providers

• Caregivers as Clients
• Often referred to as secondary patients who
  need and deserve assistance and guidance.
• Focus on how they are managing their caregiving
  responsibilities, which often place them at
  greater risk for injury and depression.
• Policy goal is to prevent them from becoming
  patients themselves.

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Caregivers as Providers

• Often need help to learn how to become competent,
  safe workers who can better support the
  individual and protect them from harm, such as a
  falling between the bed and the wheelchair
• Policy goal is to keep them on the job if they
  choose
• Need to assess the caregivers learning needs for
  caregiver training
• How to interact with the individual and
  professionals involved

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Promising State Practices

• Care Coordination through Single Entry
  Point/Aging and Disability Resource Centers,
  e.g., Michigan and Hawaii
• Consumer Direction, e.g., Oklahoma, Michigan, New
  Mexico
• Caregiver Tax Incentives, in about 22 states now,
  and legislation is pending in many more, although
  none passed in 2004-2006
• Caregiver Training and Education, e.g. Hawaii
• Medical and Family Leave, e.g., New Jersey
  (pending)
• Caregiver Assessment e.g., CA, Idaho, MA,
  Minnesota, PA, and WA

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Why focus on assessment?

• We need to consider not only how the family
  caregiver can help the consumer, but how we can
  help the family caregiver.
• What is the emergency back up plan for a family
  caregiver who cannot provide the care that is
  assumed or stated in the care plan? How would
  the state know unless there is a caregiver
  assessment?
• If the State is paying for the individuals care
  (state funded or Medicaid), and the plan for the
  individual relies on support from the family
  caregiver, the state should require and fund a
  caregiver assessment.
• Should be part of the health and safety review
  and risk mitigation that CMS requires.

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New York examples New Yorkers Age 50 Want to
Age in Place
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New York (cont.)

• More than two million family caregivers in New
  York State provide the majority of the states
  long-term care services. Those unpaid services
  were valued at over 24 billion in 2006,
  according to AARPs Public Policy Institute.
• AARPs New York State Office commended the
  State Administration for convening the New York
  State Family Caregiver Council, which is charged
  with reviewing existing caregiving policies and
  practices in the state and providing
  recommendations where they are needed. 
• AARP also is supporting a number of the HCBS
  proposals contained in the State Office for Aging
  budget this year, including
• - Creating up to seven regional caregiver
  Centers for Excellence for the purpose of
  providing education and training to
  caregivers, as well as the development and
  implementation of innovative approaches to
  assist caregivers and to reduce caregiver
  stress, including resources to provide respite
  services. (950,000)

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Future Initiatives in the States Should Also
Address

• Expansion of consumer direction for caregivers
• Increased supports for caregivers of people with
  dementia
• More inclusion of middle income caregivers in
  services and support programs

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Other Promising Public and Private Initiatives

• The Centers for Medicare and Medicaid Services
  (CMS) has a high level policy group considering
  ways to support family caregivers
• -Document available on CMS legal authority
  to support caregivers
  
  
  
  
• AoA National Family Caregiver Support Program is
  the federal champion of caregivers
• The VA is funding eight pilot caregiver programs
  to support and train family caregivers who care
  for disabled and aging veterans in their homes
• Sustained philanthropic interest in caregiving is
  growing, e.g., Hartford and Langeloth Foundation
  funding for the State of the Science Nursing
  and Social Workers Supporting Family Caregivers
  initiative.

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Federal Policy Recommendations

• Assess family caregivers own needs and refer
  them to supportive services
• Provide adequate funding for the Lifespan Respite
  Care Act, which is currently not funded at all.
• Expand funding for the National Family Caregiver
  Support Program (NFCSP). Funding for that program
  for FY 2008 was 153,440,000, down 2.7 million
  from the prior year. That funding level
  represents about one twentieth of one percent of
  the economic value of caregivers contributions,
  which was about 350 billion in 2005.
• Provide a refundable tax credit for caregiving.
• Permit payment of family caregivers through
  consumer-directed models in publicly funded
  programs.

13
Promising International Approaches

• Respite care benefits , at home, day centers, or
  in institutions, of up to four weeks per year
  (Germany)
• Social security credits for years caregivers
  remain out of the work force ( Germany, France,
  Norway, UK)
• Legislation gives right to caregiver assessment
  (England and Wales)
• Paid leave for employed caregivers (Netherlands,
  Norway, others)

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Finally, reform of our nations LTC policies is
needed to give both caregivers and care
recipients better choices.
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Selected AARP Publications

• Valuing the Invaluable A New Look at the
  Economic Value of Family Caregiving, by Gibson
  and Houser (2007)
• Long-Term Care An AARP Survey of New York
  Residents Age 50, by Burton and Bridges (2007)
• Ahead of the Curve Emerging Trends and Practices
  in Family Caregiver Support, by Feinberg,
  Wolkwitz, and Goldstein (2006)
• AARP Public Policy Institute and Research
  website
• http//www.aarp.org/research/longtermcare/resource
  s