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SAN FRANCISCO--Family Caregiver Alliance has released the findings of a study of California's publicly funded programs serving family caregivers of older persons and functionally impaired adults.

The study, mandated by California legislation AB 2622, pinpoints gaps in the system and recommends to the Department of Mental Health and the California Health and Human Services Agency a comprehensive statewide policy to support and strengthen family caregivers.

Nine major recommendations to complement informal (i.e., unpaid) care emerged from the study. Among them were: financial incentives for caregiving families; increasing the access to respite care (i.e., temporary substitute care that allows the caregiver a respite); and promoting Internet use to provide information and support.

Family members and informal caregivers are the backbone of our long-term care system, providing assistance--mostly unpaid--to loved ones with chronic illnesses or disabilities. Nearly one in four California households (2.6 million) may be involved in caregiving for persons aged 50 or older.

According to Family Caregiver Alliance's Lynn Friss Feinberg, one of the authors of the report, "two major incentives guide the development of programs for caregiver support. The first is a matter of values: older people and functionally impaired adults prefer to remain at home rather than in a facility. The second is economics: the desire to control the escalating costs of long-term care."

In the study, 17 state programs, administered by six state departments, were identified as providing some element of family caregiver support and/or respite assistance. Of these, only one, the Caregiver Resource Centers for families of adults with cognitive impairments, sees family caregivers as its primary client.

The study reveals that access to programs is variable and inconsistent, and highly dependent on where in the state the family lives and the specific eligibility criteria established. Recommended actions seek to address caregiver needs by increasing accessibility to, and breadth of, the programs offered.

1. Recognize the central role of families and informal caregivers and articulate all long-term care policies and programs to support them.

2. Establish a Select Committee on Caregiving, in both the California State Assembly and Senate.

3. Expand and offer a range of financial and other incentives to enable families to continue providing long-term care in the home and community. Establish a one-time cash grant for home modifications and assistive devices (this is similar to the Pennsylvania Family Caregiver Support program). Amend the California tax code to conform with President Clinton's proposed FY 2000 federal tax credit for persons with severe disabilities or cognitive impairment and their family caregivers. Create tax incentives for employers who develop programs to support caregiving employees.

4. Establish a uniform definition of respite care in all state legislation and ensure adequate funding. Increasing access to respite assistance to meet the needs of families should be a high priority for the state.

5. Develop a minimum data set of information collected on family caregivers across programs which provide some component of caregiver support.

6. Promote consumer direction in long-term care.

7. Assure that family caregivers of adults with physical, as well as cognitive, impairments have a place to turn for support.

8. Promote the use of the Internet and other information technology to improve access to and information about the range of caregiver support strategies in California and community resources.

9. Provide funding to conduct a California long-term care survey, including items related to caregiving.

With the aging of the Baby Boomers, caregiving is receiving more attention at both national and state levels. The federal Health Protection and Assistance for Older Americans Act of 1999 (S. 10) proposes a number of provisions for caregivers, including a $1000 long-term care tax credit. But "further measures are needed," said Family Caregiver Alliance's Feinberg. "Policy-makers in California increasingly recognize that supporting families in long-term care is both cost-effective and compassionate public policy. We hope the study's recommendations will be acted upon."

Family Caregiver Alliance is California's Clearinghouse on family caregiving and the lead agency in California's system of Caregiver Resource Centers. For more information, please contact Lynn Friss Feinberg at FCA,(415)434-3388.

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