We are becoming a nation

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1 A Special Report Family Caregivers And The Elderly: What Can States Do To Help? Diane Thornton There are only four kinds of people in this world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers. -Rosalyn Carter We are becoming a nation of caregivers. Nearly one out of every four households is involved in caregiving to persons aged 50 or over. Today, more than seven million older adults have long-term care needs. By 2020, the number will grow to 10 million, and by 2040 the number will grow to 14 million. Only a fraction of these individuals are cared for by institutions. Families and friends are the caregivers for America s elders. Who are these caregivers? It is the wife who feeds and bathes her husband who is disabled from a stroke, a grandson who takes his grandmother shopping on a weekly basis, and the daughter who visits her father with Alzheimer s disease in the nursing home. The Council of State Governments-WEST (CSG-WEST) provides a nonpartisan platform for regional cooperation and collaboration among the legislatures of the thirteen Western states by creating opportunities for legislators and staff to share ideas and experiences with their colleagues. This publication is one of several Special Reports that summarize policy forums convened at the 2002 CSG-WEST Annual Meeting hosted by the Nevada Legislature. Washington Rep. Mary Skinner chaired the 2002 CSG-WEST Committee on Aging Forum, Family Caregivers and the Elderly: What Can States Do to Help? New Mexico Rep. Nick Salazar served as vice chair. The growing significance of caregiving and its effects on families prompted the CSG-WEST Committee on Aging to tackle the tough issue of family caregivers and the elderly at the 55 th annual meeting of the Council of State Governments-WEST. The Nevada Legislature hosted the July 2002 meeting in South Lake Tahoe, Nevada. During the forum, four main topics were covered: Key issues in caregiving; Impacts of caregiving on multicultural baby boomers; The impact of federal caregiving law on the states; and Two model state laws: California and Washington. Setting the Stage CSG-WEST Committee on Aging Chair Mary Skinner, a state representative from Washington, began the forum with a video clip from the PBS special And Thou Shalt Honor that looks intimately at the lives of people who care for aging parents and loved ones. Gary Barg followed with a story about his caregiving experiences with his grandfather. He is the author of The Fearless Caregiver and CEO of Today s Caregiver Magazine.

2 Key Issues in Caregiving How does caregiving affect the lives of caregivers? Gail Gibson Hunt, the Executive Director of the National Alliance for Caregiving, gave an overview of the caregiving environment in the U.S. at the beginning of the 21 st century. The National Alliance conducts research and develops national programs for family caregivers and the professionals who serve them. Source: In the Middle, a report from AARP, July 2001 Hunt told lawmakers that not only is caregiving expensive for the family caregiver, but caregiving often interferes with work responsibilities. If paid for by government, the services provided by family caregivers would cost the health care system an estimated $196 billion annually. In addition, caregiving families typically spend $171 per month for items such as medical care, groceries and other services for the recipient. According to a report from Metlife Mutual Market Institute, caregivers can lose more than $650,000 in wages, Social Security benefits, and pensions over a career. American businesses lose between $11 billion to $29 billion a year in productivity costs due to workplace disruptions caused by caregiving duties. Impacts on Multicultural Baby Boomers The American population is aging. According to the U.S. Census Bureau, there will be 70.3 million people 65 and older by the year In other words, the aging population will double between 2000 and As the nation s baby boomers reach retirement age, they are finding themselves in the sandwich generation. They are between the ages of 45 and 55, and most of them provide care for their children and/or their parents. Linda Fisher, Research Director of AARP s Knowledge Management Division, discussed a report from AARP that focused on this generation. Based on survey work completed in 2001, In the Middle looks at the attitudes and behavior of the sandwich generation from a multicultural perspective. The AARP survey reveals that people in the sandwich generation generally accept their role as caregivers for their loved ones, despite added demands. Nearly 90 percent of those surveyed said that family is the most important thing in their lives. Almost 44 percent of those households experience both sides of the sandwich, with parents or in-laws that are living and children under 21 years of age. Attitudes toward caregiving vary among people of different racial and ethnic backgrounds. According to the AARP study, African Americans and Asian Americans report feeling more stressed with their financial situation and their ability to handle many family responsibilities. Asian American and Hispanic American families feel more guilt about the level of care they provide, although they provide more care than other groups. 2 CSG-WEST Special Report on Aging Winter 2003

3 In response to the findings, AARP recommended several approaches to aid the caregiver: Caregiving programs need to address the cultural diversity that reflects our population. Government institutions need to explore ways to provide caregiver support and to reach out to sandwich generations. Working individuals need workplace flexibility to meet caregiving demands. The financial resources to caregivers from Social Security, Medicare and other programs that help retirees and persons with disabilities need to be strengthened. Winter 2003 Sandwich Generation (Aged 45-55) Cares for Parents % Providing Ethnicity Care 19% White 28% African Americans 34% Hispanic Americans 42% Asian Americans Source: In the Middle, a report from AARP, July 2001 The Impact of Federal Caregiving Law on the States The National Family Caregiver Support Program (NFCSP) was signed into law in The program is part of the Older Americans Act and is the first federal program that recognizes family caregivers. The NFCSP provides funding for innovative grants to help states develop five basic services: 1. Information to caregivers about available services; 2. Assistance to caregivers about support services; 3. Individual counseling, advice on support groups and caregiving training; 4. Respite care; and 5. Supplemental services to complement the care provided by caregivers. State Strategies State strategies for providing family caregiver support are diverse. Two states, California and Pennsylvania, fund comprehensive statewide family caregiver programs from state general CSG-WEST Special Report on Aging 3

4 revenue. Other state caregiver programs can be grouped into five general categories: Education and information; Adult day services and respite care programs; Tax incentives for family caregiving expenses; Expansion of Medicaid home and communitybased services; and Choice and control in arranging personal assistance and payment of caregivers with government funds. California and Washington Help Family Caregivers Western legislators reviewed two Western state laws designed to help family caregivers. On average, the family caregiver helped by California provides 86 hours of care per week to her relative. California (See Appendix I) California s Caregiver Resource Centers (CRCs) were created in Lynn Friss Feinberg, Deputy Director of the National Center on Caregiving at the San Francisco-based Family Caregiver Alliance, explained the California service model. The CRCs serve more than 9,000 family caregivers a year, providing such services as training, respite care and counseling. Those served are low-middle income caregivers of persons with adult-onset chronic, disabling brain diseases and disorders. The typical client served is a 60-year-old female who has been caring for her husband with a diagnosis of Alzheimer s disease for almost five years and is on a fixed income. On average, the family caregiver helped by California provides 86 hours of care per week to her relative. The Sandwich Generation (aged 45-55) How They Care How They Cope 83% Telephone 62% Turn to faith/prayer 46% Drive parents places 47% Turn to siblings 45% Do housework 42% Turn to religious organizations 44% Shop 30% Turn to other relatives 36% Talk to doctors 30% Turn to their adult children 33% Handle bills/paperwork 30% Turn to friends, neighbors, coworkers 27% Contribute financially 21% Turn to community organizations 17% Hire nurses or aides 15% Turn to government or national groups 12% Help with intimate care 8% Turn to their employer Source: In the Middle, A report from AARP, July 2001 Washington (See Appendix II) In 1989, the Washington Legislature passed a measure to create the Washington Family Caregiver Support Program. Lynne Korte, Program Manager with the Aging and Adult Services Administration, discussed how the 1999 passage of federal legislation (National Family Caregiver Support Program) allowed her state to build and expand its caregiver program. The Washington program offers: information; assistance; promotion; and creation of support groups, caregiver training, respite care, and supplemental services for caregivers. Despite the broad criteria of serving caregivers of disabled adults aged 18 and over and seniors, the most common caregiver is aged 60 and over and is caring for someone with a form of dementia, cardiovascular disease, or musculoskeletal disease. Conclusions Family caregiving is widespread in households across the America. With the population aging and baby boomers reaching retirement age, caregiving will only be more prevalent in the future. In Washington, D.C. and in state capitals nationwide, policymakers have awakened to the economic and social impacts of caregiving. Diane Thornton is a Senior Research Analyst with the Nevada Legislative Counsel Bureau. 4 CSG-WEST Special Report on Aging Winter 2003

5 Appendix I The California Experience Begun in 1985, California s Caregiver Resource Centers (CRCs) constitute the first statewide, state-funded program to address the needs of family caregivers, and are administered by the California Department of Mental Health (under Chapter 1658, Statutes of 1984, as amended). The service model replicates the pilot project developed by the San Francisco-based Family Caregiver Alliance (FCA), formerly Family Survival Project, in the early 1980 s. The law established both statewide and regional services. At the state level, Family Caregiver Alliance serves as the statewide resources consultant to the Department of Mental Health and carries out policy and program development, develops education programs, provides training and technical assistance to the CRC sites, conducts applied research, and maintains a statewide information clearinghouse on caregiving and adult-onset (age 18-plus) brain impairments. At the regional level, eleven nonprofit CRCs serve as a point of entry to a broad range of services for caregiving families. overnight stays in a facility, weekend camps and other respite options). CRCs serve over 9,000 family caregivers a year. Six in ten caregivers completing an initial intake phone call go on to receive additional services. Nearly 800 families receive an average of seven hours of respite per week. The average monthly respite cost per family caregiver is $222, including the average copayment of $18. More than 3,000 California families are on a respite wait list. Source: Excerpt from Options for Supporting Informal and Family Caregiving, a 1997 paper prepared by Lynn Friss Feinberg, Family Caregiver Alliance, for the American Society on Aging, August Following are copies of California s caregiving laws: The CRCs serve low-middle-income families and caregivers of persons with adult-onset chronic, disabling brain diseases and disorders (e.g., Alzheimer s and Parkinson s diseases, stroke, traumatic brain injury). Caregivers receiving subsidized respite assistance must live with the care recipient and be ineligible for California s In-Home Supportive Services (IHSS) program or other public benefits. High priority is given to families caring for cognitively impaired adults who exhibit behavioral problems and for whom few respite resources exist. In the fiscal year , the state appropriation for the eleven CRCs and the statewide resources consultant is $5.047 million. All CRCs provide a core package of caregiver support services including: specialized information and referral; caregiver assessment in the home; family counseling; support groups; education and training, including psychoeducational classes; vouchered legal consultations with attorneys; and vouchered respite assistance (including homecare, adult day services, Winter 2003 CSG-WEST Special Report on Aging 5

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16 The Washington State Family Caregiver Support Program (FCSP) The Washington Legislature passed a measure known as the Fred Mills Act, which established the Sate Family Caregiver Support Program (FCSP). The legislation provides that the state direct the Area Agencies on Aging to provide an array of programs and services to the unpaid family member who is providing care to a senior or disabled adult. It lists what the legislature meant by programs and services and included information about public and private long-term care and support services. It means assisting and gaining access to long term care services; it means promoting and implementing support groups; it includes caregiver training so that it would assist the caregivers in making the daily decisions and solving the challenges that come up for them. It includes some respite care and it also includes some support services like transportation, translation or interpreter services, or guidance in providing specialized supplies. This legislation makes resource information more accessible for about 500,000 unpaid family caregivers, who provide 85 percent of all long term care statewide. The FCSP is funded both by the state and the new federal National Family Caregiver Support Program, under Title III of the Older Americans Act. In all regions of the state, the goal of the Washington program is to coordinate efforts by existing programs or agencies. Chapter RCW RESPITE CARE SERVICES SECTIONS Legislative findings Intent Definitions Administration Rules Program standards Family caregiver long-term care information and support services Respite services, evaluation of need, caregiver abilities Respite care program Criteria. 16 Appendix II The Washington Experience CSG-WEST Special Report on Aging Family caregiver long-term care information and support services Data Health care practitioners and facilities not impaired Entitlement not created. RCW Legislative findings. The legislature recognizes that: (1) Most care provided for functionally disabled adults is delivered by family members or friends who are not compensated for their services. Family involvement is a crucial element for avoiding or postponing institutionalization of the disabled adult. (2) Family or other caregivers who provide continuous care in the home are frequently under substantial stress, physical, psychological, and financial. The stress, if unrelieved by family or community support to the caregiver, may lead to premature or unnecessary nursing home placement. (3) Respite care and other community-based supportive services for the caregiver and for the disabled adult could relieve some of the stresses, maintain and strengthen the family structure, and postpone or prevent institutionalization. (4) With family and friends providing the primary care for the disabled adult, supplemented by community health and social services, long-term care may be less costly than if the individual were institutionalized. [1984 c ] RCW Intent. It is the intent of the legislature to provide a comprehensive program of long-term care information and support, including in-home and out-of-home respite care services, for family and other unpaid caregivers who provide the daily services required when caring for adults with functional disabilities. The family caregiver long-term care information and support services shall: (1) Provide information, relief, and support to family or other unpaid caregivers of adults with functional disabilities; Winter 2003

17 (2) Encourage family and other nonpaid individuals to provide care for adults with functional disabilities at home, and thus offer a viable alternative to placement in a long-term care facility; (3) Ensure that respite care is made generally available on a sliding-fee basis to eligible participants in the program according to priorities established by the department; (4) Be provided in the least restrictive setting available consistent with the individually assessed needs of the adults with functional disabilities; (5) Include services appropriate to the needs of persons caring for individuals with dementing illnesses; and (6) Provide unpaid family and other unpaid caregivers with services that enable them to make informed decisions about current and future care plans, solve day-to-day caregiving problems, learn essential caregiving skills, and locate services that may strengthen their capacity to provide care. [2000 c 207 2; 1987 c 409 1; 1984 c ] NOTES: Short title 2000 c 207: This act shall be known and cited as the Fred Mills act. [2000 c ] RCW Definitions. Unless the context clearly indicates otherwise, the definitions in this section apply throughout this chapter. (1) Family caregiver long-term care information and support services means providing long-term care information and support services to unpaid family and other unpaid caregivers of adults with functional disabilities, including but not limited to providing: (a) Information about available public and private longterm care support services; (b) assistance in gaining access to an array of appropriate long-term care family caregiver services; (c) promotion and implementation of support groups; (d) caregiver training to assist the nonpaid caregivers in making decisions and solving challenges relating to their caregiving roles; (e) respite care services; and (f) additional supportive long-term care services that may include but not be limited to translating/interpreter services, specialized transportation, coordination of health care services, help purchasing needed supplies, durable goods, or equipment, and other forms of information and support necessary to maintain the unpaid caregiving activity. (2) Respite care services means relief care for families or other caregivers of adults with functional disabilities, eligibility for which shall be determined by the department by rule. The services provide temporary care or supervision of adults with functional disabilities in substitution for the caregiver. The term includes adult day services. (3) Eligible participant for family caregiver longterm care information and support services means an adult who needs substantially continuous care or supervision by reason of his or her functional disability and may be at risk of placement into a long-term care facility. (4) Eligible participant for respite care services means an adult who needs substantially continuous care or supervision by reason of his or her functional disability and is also assessed as requiring placement into a long-term care facility in the absence of an unpaid family or other unpaid caregiver. (5) Unpaid caregiver means a spouse, relative, or friend who has primary responsibility for the care of an adult with a functional disability and who does not receive financial compensation for the care. To be eligible for respite care and for family caregiver support services, the caregiver is considered the client. (6) Adult day services means nonmedical services to persons who live with their families, cannot be left unsupervised, and are at risk of being placed in a twenty-four-hour care facility if their families do not receive some relief from constant care. (7) Department means the department of social and health services. [2000 c 207 3; 1987 c 409 2; 1984 c ] NOTES: Short title 2000 c 207: See note following RCW RCW Winter 2003 CSG-WEST Special Report on Aging 17

18 Administration Rules Program standards. The department shall administer this chapter and shall establish such rules and standards as the department deems necessary in carrying out this chapter. The department shall not require the development of plans of care or discharge plans by nursing homes providing respite care service under this chapter. The department shall develop standards for the respite program in conjunction with the selected area agencies on aging. The program standards shall serve as the basis for soliciting bids, entering into subcontracts, and developing sliding fee scales to be used in determining the ability of eligible participants to participate in paying for respite care. [1987 c 409 3; 1984 c ] RCW Family caregiver long-term care information and support services Respite services, evaluation of need, caregiver abilities. The department shall contract with area agencies on aging or other appropriate agencies to conduct family caregiver long-term care information and support services to the extent of available funding. The responsibilities of the agencies shall include but not be limited to: (1) Administering a program of family caregiver long-term care information and support services; and (2) negotiating rates of payment, administering sliding-fee scales to enable eligible participants to participate in paying for respite care, and arranging for respite care information, training, and other support services. In evaluating the need for respite services, consideration shall be given to the mental and physical ability of the caregiver to perform necessary caregiver functions. [2000 c 207 4; 1989 c 427 8; 1987 c 409 4; 1984 c ] NOTES: Short title 2000 c 207: See note following RCW Severability 1989 c 427: See RCW RCW Respite care program Criteria. The department shall insure that the respite care program is designed to meet the following criteria: (1) Make maximum use of services which provide care to the greatest number of eligible participants with the fewest number of staff consistent with adequate care; (2) Provide for use of one-on-one care when necessary; (3) Provide for both day care and overnight care; (4) Provide personal care to continue at the same level which the caregiver ordinarily provides to the eligible participant; and (5) Provide for the utilization of family home settings. [1984 c ] RCW Family caregiver long-term care information and support services Data. The area agencies on aging administering family caregiver long-term care information and support services shall maintain data which indicates demand for family caregiver long-term care information and support services. [2000 c 207 5; 1998 c ; 1987 c 409 5; 1984 c ] NOTES: Short title 2000 c 207: See note following RCW RCW Health care practitioners and facilities not impaired. Nothing in this chapter shall impair the practice of any licensed health care practitioner or licensed health care facility. [1984 c ] RCW Entitlement not created. Nothing in this chapter creates or provides any individual with an entitlement to services or benefits. It is the intent of the legislature that services under this chapter shall be made available only to the extent of the availability and level of appropriation made by the legislature. [1987 c ] 18 CSG-WEST Special Report on Aging Winter 2003

19 Report from the CSG-WEST Committee on Aging July 19, 2002 Mr. Chairman, yesterday the Committee on Aging gathered together the foremost national and regional experts on the issue of family caregivers for the elderly. We learned that: One in every four American households is involved in care giving and the number will increase dramatically as baby boomers age. These caregivers provide 80 percent of all long-term care and that saves government a great deal of money. The estimated value (in 1997 $) of this care giving by American families is $196 billion dollars. In the 13 Western states, the estimated value of family care giving is about $42 billion. Among baby boomers, Asian Americans, Hispanic Americans and African Americans are more likely to be caregivers than other groups. Although caregivers cope with a wide variety of issues (and the number one way of coping is spiritual), they also have needs that government can help with such as information about services, respite care and training. Both the federal government and the states are working to help caregivers. The West has several model programs, and we looked at California and Washington state s. A new federal program was authorized in 1999 to give states money to help caregivers. That federal program now appropriates $141 million to the states. The Committee on Aging sent a letter in support of efforts by U.S. Senators Collins and Mikulski to almost double federal family caregiver funding to $250 million per fiscal year. We will also send that letter to our sister CSG regions and to the national CSG urging them to support increased funding for the National Family Caregiver Support Program. Utah Representative Carl Saunders presented this report to the CSG-WEST Executive Committee on behalf of the Committee on Aging. Winter 2003 CSG-WEST Special Report on Aging 19

20 Resources for Policymakers and Caregivers Dale Bell, Executive Producer Wiland-Bell Productions, Culver Studios 9336 W. Washington Blvd., Bldg. F Culver City, CA dale@wilandbellprod.com Contact Bell to purchase the 15-minute preview version of the PBS special And Thou Shalt Honor. This moving drama puts a human face on family caregiving. The video can be used to set the stage for town hall gatherings, legislative committee meetings or family discussions. More information about family caregiving may be obtained at Gary Barg, Founder and Editor Today s Caregiver magazine 6365 Taft St. Suite #3006 Hollywood, Florida gary@caregiver.com Barg has created an on-line community where family caregivers can exchange ideas and receive support. Request a free on-line newsletter at Gail Gibson Hunt, Executive Director National Alliance on Caregiving 4720 Montgomery Lane, Suite 642 Bethesda, Maryland gailhunt@caregiving.org Hunt s organization conducts research and develops national programs for caregivers. NAC follows federal legislation that affects family caregivers. Linda Fisher, Research Director AARP National Member Research Department Knowledge Management 601 E. St., NW Washington, D.C lfisher@aarp.org Fisher supervised the research team that produced In the Middle, a study of how multicultural baby boomers are coping with aging issues. To view a copy of the full report, visit Also of interest to policy makers is AARP s report Helping the Helpers, which may be viewed at _07_help.html. This report looks at programs in California, Pennsylvania, New Jersey, Florida, Georgia, South Carolina and Northern Nevada. Lynn Friss Feinberg, Deputy Director National Center on Caregiving Family Caregiving Alliance 690 Market St., Suite 600 San Francisco, CA lfeinberg@caregiver.org The National Center on Caregiving is a resource center for policymakers, service providers, media and families. Feinberg is an authority on the California s Caregiver Resource Centers. Contact NCA for a variety of policy papers and executive summaries on family caregiver initiatives. State legislators may call to request a free copy of Family Caregiver Support, an in-depth review of 10 state caregiver programs including California, Hawaii and Washington. View clearinghouse information at Lynne Korte, Program Manager Aging and Adult Services Administration Washington Department of Social and Health Services PO Box Olympia, WA kortelm@dshs.wa.gov For information about Washington State s Family Caregiver Support Program, contact Korte. Council of State Governments-WEST Chair: Chair-Elect: Vice Chair: Past Chair: Brian T. Taniguchi Hawaii State Senator Bart M. Davis Idaho Senate Majority Leader Kate Brown Oregon Senate Democratic Leader Lynn Hettrick Nevada Assembly Minority Leader th Street, Suite 650 Sacramento, CA phone fax csgw@csg.org