Caregiving 2000: The State of the States
FCA Releases National Study of Caregiver Support Programs
SAN FRANCISCO, October 29, 1999 -- At its long-term care policy conference today in San Francisco, Family Caregiver Alliance released findings of the first in-depth national survey of selected state-funded caregiver support programs.
The study offers a compendium of best practices in caregiver programs. For state policy-makers, the need for such programs is urgent.
According to the U.S. Department of Health and Human Services, an estimated one in three Americans, or about 52 million persons, provide unpaid care each year for one or more ill or disabled family members or friends of all ages (1998 figures). Approximately 80 percent of long-term care in the United States is provided by families, at home, not in institutions.
States have an increasingly greater responsibility for the financing, eligibility, coverage and delivery of long-term care services, and caregiver support programs play an important role in the every day lives of families. Yet there are differences among states in how-or if-they fund and deliver needed services.
The study profiles 33 programs from 15 states. The annual state expenditures for the programs analyzed ranged from $150,000 (New York's Alzheimer's Disease Community Assistance Program) to $484,797,000 (California's Regional Centers serving persons with developmental disabilities and their families).
Programs selected for analysis were based on:
- geographic representation of U. S. regions, including urban and rural areas;
- the largest populations of older persons;
- highest state funding or highest per capita spending for caregiver support and/or respite care;
- a mix of target populations (e.g., older persons, developmentally disabled younger persons, those with cognitive impairments such as Alzheimer's disease);
- identified leadership in providing family caregiver support programs.
"Best Practice" Models
The study reports on innovative services in programs from all parts of the U.S. Five programs were recognized as "best practice" models in caregiver support services. They are:
- California's Caregiver Resource Centers, administered by the California Department of Mental Health;
- New Jersey's Statewide Respite Program, administered by the New Jersey Department of Health and Senior Services;
- New York's Consumer and Family Support Services, administered by the Office of Mental Retardation and Developmental Disability;
- Oregon's Lifespan Respite Care Program, administered by the Oregon Department of Human Resources;
- Pennsylvania's Family Caregiver Support Program, administered by the Pennsylvania Department of Aging.
According to Lynn Friss Feinberg, Family Caregiver Alliance's Manager of Research and Information and an author of the report, "This study is designed to stimulate development of programs in states that currently do not have caregiver support programs, and to share information about successful services that can be replicated throughout the nation. Caregiver programs are not just for the older population. People in need of long-term care cover the lifespan, and their service needs are diverse.
"Within the broad array of programs we analyzed, common themes were cited: flexible service packages, broad income eligibility, consumer direction, and a range of respite options. These are services caregiving families and their service providers consistently find most helpful."
Feinberg continues, "Since we started working on this survey, we're very encouraged to see that more states have developed caregiver support programs to meet the growing need."
The study, entitled Survey of Fifteen States' Caregiver Support Programs: Final Report, was funded by the Archstone Foundation. The authors were FCA's Lynn Friss Feinberg, M.S.W., and Tammy Pilisuk, M.P.H..
A national Advisory Committee included: Matt Bowdy, former health policy analyst, The Council of State Governments; Jon Dauphiné, executive director, Long Term Care Campaign; Wendy Fox-Grage, senior policy specialist, National Conference of State Legislators; Elinor Ginzler, senior program specialist for health and long term care, AARP; Rick Greene, program manager, New Jersey Division of Senior Affairs; Gail Gibson Hunt, executive director, National Alliance for Caregiving; Robert Mollica, deputy director, National Academy for State Health Policy; and Myrl Weinberg, president, National Health Council.
Family Caregiver Alliance is a nationally recognized information center on long-term care and the lead agency in California's statewide system of Caregiver Resource Centers.
The report is available at a cost of $30.00 from Family Caregiver Alliance, 180 Montgomery St., Ste. 1100, San Francisco, CA 94104. For more information, see the website at www.caregiver.org.
NOTE to editors: For additional information, see the Executive Summary of the report.
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