H:\Family Care\Ron Moore\Research-Facts-Stats-Trivia\Survey of 15 States Caregiver Support Programs.doc
From Family Caregiver Alliance Website March 12, 2002
Executive Summary
Survey of Fifteen States' Caregiver Support Programs
Background: Family members and other informal caregivers are the backbone of our long term care system, providing largely unpaid assistance to loved ones with chronic illnesses or disabilities. An estimated one in three Americans, or about 52 million persons, care each year for one or more ill or disabled family members or friends of all ages (U.S. Department of Health and Human Services, 1998). The caregiver role results in enormous emotional, physical and financial hardships, even though it is willingly undertaken and often a source of great personal satisfaction. Caregivers commonly experience a sense of burden, fair-to-poor physical health and high rates of depression. Worries over paying for care especially plague middle income families who are not eligible for public benefits, yet cannot afford the out-of-pocket costs of care. Half, or more, of family caregivers juggle work, family and caregiving responsibilities, resulting in work disruptions and lost productivity. Caregiving will preoccupy American families well into the 21st century, as the baby boomers join the ranks of older Americans. The coming demographic transformation and changing patterns of family life will only intensify demands on family caregivers.
Thus, caregiver support has become a salient policy issue in debates on Capitol Hill, in state legislatures and in workplaces across the country. In fact, many decision-makers in both the public and private sectors are personally affected by caregiving; they themselves are providing care to older parents, spouses and other relatives and friends. Because states have had an increasingly greater responsibility for the financing, eligibility, coverage and delivery of long term care services, many state policymakers show a strong interest in sustaining family caregivers. Although caregiving and long term care command attention in state legislatures and caregiver support programs play an important role in the everyday lives of families, information on state-supported programs for caregivers is limited.
Purpose: This survey aimed to learn more about state-funded caregiver support programs that serve families and informal caregivers of frail elders and persons with disabilities. Family Caregiver Alliance (FCA) conducted the study in preparation for the first national invitational state policy conference on caregiving, Family Caregivers: Partners in Long Term Care, held in San Francisco, California on October 29-30, 1999.
Three objectives guided the survey:
· To describe a range of state-funded caregiver support programs across the country; their structure, philosophy, challenges, successes and relationship to other home and community-based programs.
· To assess the view of state program administrators on the role of caregiver support programs in long term care and obtain their recommendations to other states that are exploring ways to support caregiving families.
· To identify best practices to serve as useful models for other states.
Method: The key informant method, with written surveys and telephone interviews, was used to catalogue and describe the state programs. Data were collected for fiscal year 1997-98 or calendar year 1998. Fifteen states and 33 programs within these states were chosen based on: 1) the largest populations of older persons; 2) geographic representation of U.S. regions as well as urban and rural areas; 3) highest state funding or highest per capita spending for caregiver support and/or respite care; 4) a mix of target populations, such as older persons and those with physical impairments, adult-onset cognitive impairments (e.g., Alzheimer's disease) and developmental disabilities; and 5) identified leadership in providing family caregiver support programs.
The state-funded caregiver support programs surveyed were those of California, Florida, Illinois, Iowa, Michigan, New Jersey, New York, North Dakota, Ohio, Oregon, Pennsylvania, Texas, Virginia, Washington and Wisconsin. Key informants were program administrators responsible for monitoring the programs, who knew about the history and actual program operations and practice, and understood family caregiving issues in their state.
Written surveys were mailed to each identified informant at the end of April 1999 and semi-structured telephone interviews were conducted between May and July 1999. Each informant was sent a verification sheet to double-check the accuracy of the data.
Key Findings:
· In a few states, caregiver support has a long tradition, while caregiver programs are new in others. The two oldest programs focus on family support for the developmentally disabled population: Washington's Family Support Program created in 1975 and California's Regional Centers established statewide in 1976.
· The vast majority (85%) have a legislative mandate, providing a level of recognition and relative stability in the state budget process. Nearly three-fourths have identified and defined family caregivers as a specific population, either through statutory language, administrative or programmatic definitions.
· A range of state agencies administer caregiver support programs, including departments of aging, health, developmental disabilities, health and human services, and mental health. Over half of the state-based programs are administered by departments of aging.
· Contrary to popular belief, caregiver programs are not just for the older population. Most serve those caring for persons with functional impairments, with adult-onset cognitive impairments (e.g., Alzheimer's disease), and/or with developmental disabilities.
· Well over half of the programs consider both the person with a disability and the family caregiver to be clients of the program. Seven designate the family or informal caregivers as their primary client; seven, including five with Medicaid support, see their main client to be the person with disability.
· Programs serving a population with cognitive, as opposed to physical, impairments more often see the family caregiver as eligible for program services.
· Medicaid funding appears to be associated with client designation as five of the seven programs focused on the person with disability have Medicaid support.
· Eligibility criteria for the 33 programs vary widely by diagnostic/functional level, age and income. Most programs (28) use criteria related to the diagnosis or functional impairment of the care recipient; nearly half (16) have no age requirements for either the family caregiver or the care recipient. Just nine (27%) restrict eligibility to low income clients only; the majority serve middle income families, often through a sliding fee scale or cost sharing mechanism.
· Nearly all utilize an assessment instrument to plan care for the person with disability, but just eight (24%) uniformly assess the needs and situation of the family caregiver.
· Programs offer a range of services and service options for caregivers. Over two-thirds provide five or more caregiver services - most typically respite care, specialized information and referral, family consultation or care planning, support groups, care management, or education and training.
· Nine programs in six states offer comprehensive service packages for caregivers: California's Caregiver Resource Centers and Regional Centers; Florida's Home Care for the Elderly; Illinois' Home Services Program; New York's Consumer and Family Support Services and Community Services for the Elderly Program; Pennsylvania's Family Caregiver Support Program; and Wisconsin's Alzheimer's Family Caregiver Support Program and its Community Options Program.
· For respite assistance, which 30 programs offer, service definitions, eligibility, mode of delivery and funding vary widely across programs and within states. Half of the programs offering respite allow a family member to receive payment for providing respite care.
· The number of persons served annually ranges from 300 for North Dakota's Family Support Services to more than 147,000 by California's Regional Centers and is related to level of funding, scope of services and state population. Most state programs (45%) were small, serving fewer than 10,000 persons in fiscal year 1997-98.
· Eighteen programs (55%) cap services per client. The limits vary substantially, reflecting differences in services delivered and overall program budgets. Twelve programs in nine states have cost caps and six programs have utilization caps, typically for respite services.
· The surveyed programs rely heavily upon state funding, most commonly State General Funds. New Jersey uses state casino revenues; Michigan taps "Escheat" monies (a pool of Blue Cross/Blue Shield checks to beneficiaries which remain uncashed for five years and set aside to fund designated health care programs).
· Sixteen programs (48%), in eight states, receive funding only from state sources. Excluding California's Regional Centers for the developmentally disabled, with reported state expenditures of $484 million, state expenditures for the remaining programs (32) were estimated at $544 million in fiscal year 1997-98.
· One-third of programs (11) receive federal funding and eight supplement state dollars with local funds. Medicaid matching funds, or Medicaid waivers, are the usual federal sources but three use Older Americans Act funds for respite care: Illinois' Community Care Program; Ohio's Alzheimer's Respite Program; and Washington's Respite Care Program.
· Combined expenditures from all funding sources were nearly $2.2. billion in fiscal year 1997-98. However, California's Regional Centers account for over half (53%) of total spending.
· One-third of the programs received a funding increase in fiscal year 1998-99 or 1999-00. Three received $2 million or more: California's Alzheimer's Day Care Resource Centers ($2 million) and Caregiver Resource Centers ($4 million), and North Dakota's Family Home Care ($4 million).
· Key informants report the most beneficial aspects of their programs for family caregivers are support afforded to families; respite care; flexibility of program services; broad income eligibility to serve middle income families; and a focus on consumer-directed care.
· Key informants report the biggest problems or challenges the programs face to be inadequate funding; recruiting respite workers/raising worker wages; lack of awareness of program services; demographic shift to an older population; and limited services or program scope.
· While virtually all respondents acknowledged the importance of recognizing and strengthening the role of family caregivers, none expressed the belief that "stand-alone" caregiver programs should be the direction of the future. Rather, programs which primarily address the needs of the person with disabilities should coordinate with those that target the family and informal caregiver.
· To strengthen existing caregiver support programs, respondents recommended more funding in general and more funding for respite care in particular; more service choices; and more public awareness to reach more families and/or draw public attention to their needs.
· The main recommendations respondents offer to other states are to ensure a flexible array of caregiver support services; and maximize family and consumer involvement in service planning and delivery.
Conclusions: The 15 states surveyed utilize diverse approaches to provide caregiver support services and vary in their target populations, eligibility criteria, range and scope of caregiver support services, and the amount of funds they allocate to support family and informal caregivers. Some states, notably California (with its Caregiver Resource Centers) and Pennsylvania (with its Family Caregiver Support Program), have developed separate programs, specific funding and services for family caregivers . Others, for example, Wisconsin (with its Community Options Program), have integrated caregiver support within an array of community-based long term care services for people with disabilities or frail elders and family caregivers.
A flexible service package, broad income eligibility, consumer direction and a range of respite options were frequently cited as key program elements to meet the needs of families with varied and ever-changing caregiving situations. While all 33 programs surveyed had one or more innovative features, five programs stood out as "best practice" models, based on eight criteria:
· 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 program, 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
These five programs all recognize in state statute the term "caregiver;" offer an array and choice of caregiver support services and a range of respite options; consider the client to be the family or informal caregiver, or both the caregiver and care recipient; employ consumer direction and a family systems orientation; use broad eligibility criteria; provide access for middle income as well as low income families; collect statewide data on family caregivers; and have experienced program growth.
Persons with chronic illness and disabilities need a broad array of information and services over a prolonged period of time. So do their family caregivers. The challenge for states is to ensure that families are recognized and supported, either through promoting distinct state-based programs for family caregivers that are linked to other service delivery systems or by integrating caregiver support into existing home and community-based programs.
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 Dauphin E 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, 690 Market St., Ste. 600, San Francisco, CA 94104.
State / Program / DepartmentCalifornia / Alzheimer's Day Care Resource Centers / Department of Aging
Caregiver Resource Centers / Department of Mental Health
Regional Centers / Department of Developmental Services
Florida / Alzheimer's Disease Initiative / Department of Elder Affairs