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    Statement by
    Josefina G. Carbonell
    Assistant Secretary for Aging, U.S. Department of Health and Human Services
    The National Family Caregiver Support Program
    before the
    Senate Committee on Health, Education, Labor and Pensions Subcommittee on Aging

    May 7, 2002

    Madam Chair and Members of the Subcommittee:

    Thank you for the opportunity to testify today -- a most appropriate time as May is Older Americans Month -- on the Administration on Aging's (AoA) efforts to support America's caregivers and implement the National Family Caregiver Support Program. I appreciate this Subcommittee's commitment to America's families and I am grateful for the support you have shown to ensure that the caregiver program remains strong and effective.

    Today, I am pleased to report that after one year the National Family Caregiver Support Program is a success. I would like to share with you some examples of the great strides we are making in the program.

    Last year, HHS Secretary Tommy Thompson released $113 million to States and territories. The community services and resources made available by this funding is easing the burden of approximately 250,000 caregivers all across the nation. This year, an additional $128 million was awarded to States. I am proud that States and localities are using these funds in a number of creative ways. For instance, we have seen new tele-health technology using computers to link caregivers to support networks. Caregiver resource centers have been established in public libraries. Donated computers have been retrofitted and used to establish an online support group staffed by a registered nurse. Retirees have received training and are providing respite care. States are bringing adult day care to rural communities by creating "mobile day care programs," in which staff travel from 25 to 45 miles a day to offer respite for caregivers by providing day care. These are just some of the many innovative initiatives we are hearing about from the States.

    Caregiver funds are also being used to form new partnerships, to improve access to services, and to reach out to special populations. Let me give you just one example from each of these categories.

    First, States are forming new partnerships. "Faith-in-Action" is an inter-faith initiative that recruits volunteers from faith-based communities to assist the elderly, and those with disabilities and their caregivers. States are collaborating with these existing projects and establishing additional programs in underserved areas.

    Second, the are improving access to services. The area agency on aging in Seattle is implementing caregiver training and skills building. The program is designed to help caregivers maintain their own health and increase their confidence in handling difficult situations, emotions and decisions. While attending training courses, these caregivers can access services. This training program has also been successfully introduced to other States, as well.

    Third, we are reaching out to special populations. Virginia, for example, is providing specialized services to male caregivers, particularly retired military personnel and men who live in rural and farming communities. Although it is true that most caregivers are women, significant contributions are made every day by husbands, brothers, and sons.

    In the first year of the caregiver progam, the aging network made great strides in designing responsive support systems. Two keys to this success are flexibility and consumer input. AoA, State and area agencies, tribes and providers solicited the input of caregivers in shaping programs through town meetings, focus groups, advisory boards with caregiver representation, new partnerships with the faith community and businesses, and outreach to special populations. AoA has been in the forefront of this movement by conducting listening sessions across the country to hear first-hand from America's caregivers about their own unique needs.

    NFCSP Assists Caregivers By Providing Them What They Need

    I would like to share with you how we are contributing to helping America's caregivers. Through information assistance, many caregivers have been helped to determine if their loved one is eligible for Federal programs such as Medicaid, and are assisted with paperwork. Also, caregivers of veterans are learning that their spouses may be eligible for benefits from the Department of Veterans Affairs such as medication assistance. AoA is working both within and outside the Department of Health and Human Services to help those we are entrusted to serve. I am proud to say that AoA is part of what we call "One Department." We all work together to reduce barriers to participating in programs so that the customer always comes first.

    I would like to share with you some real life examples of how this program is helping caregivers. A caregiver in North Carolina was involved in an automobile accident and was hospitalized. She was caring for her mother with Alzheimer's disease and her stepfather who had multiple physical problems. Caregiver program funds were used to temporarily place her mother and stepfather in a long-term care facility during the duration of her hospitalization.

    South Carolina assisted an 80-year-old great-grandmother who is caring for her 23-year-old granddaughter with end-stage AIDS and her three young children. Funds are used to purchase diapers and related supplies for the babies and respite care for the great-grandmother to allow her to go to medical appointments.

    In Missouri, a grab bar and bath bench assisted an 80- year-old gentleman to continue to care for his 78-year-old wife with Alzheimer's disease. An occupational therapist came to the home to instruct the caregiver in the proper and safe way of using the equipment to bathe his wife.

    Measuring Success

    President Bush believes the truest kind of compassion does not only come from more government spending, but from helping citizens build lives of their own. It is compassionate to actively help our citizens in need, yet it is responsible to insist on accountability and results. AoA has made greater use of performance outcome measures and indicators for ongoing program assessment and to support evaluation decisions. We are applying this approach to the caregiver program. These measures include identifying the number of individuals served, the extent to which State entities are providing various types of services supported by the Older Americans Act (OAA), and a broad measure of outreach through the ratio of caregivers to OAA service clients. In addition, AoA and its partners have developed an outcome measures survey instrument specifically for caregiver services. This instrument will allow us to assess program implementation, including:

    • The extent of services available specifically to caregivers;
    • Caregiver satisfaction with services to the elderly; and
    • Caregiver assessment of the impact of services to them and to the elderly.

    Challenges B Where Do We Go From Here?

    First, I believe we need to heighten public awareness that caregiving is a public health issue and it needs to be realized as such. Caregiving takes its toll on caregivers, jeopardizing their health and emotional well-being.

    More than 44 percent of the State health departments have begun to address caregiving issues. Many of the millions of caregivers are aged themselves. All too often they assist loved ones at a considerable cost to themselves. The physical demands, emotional distress, and their sheer age increase their risk for health problems. Frequently, caregivers do not seek medical care or engage in preventive health practices. AoA has heard from caregivers that while health and social service providers often treat the caregiver's family members, they rarely ask about the caregiver's needs. It is important that we work to educate all sectors of the health care community about the importance of treating the caregiver as well as the care recipient.

    A second challenge and a primary concern of mine is that caregivers often are not aware they are caregivers or that services exist. All too often, a caregiver seeks help only when crisis occurs. I want all caregivers to be aware that help is available through the National Family Caregiver Support Program. Any one of us -- at any time B may be a caregiver to a member of our family. I am one and I know that there are many others like me here today in this room.

    I am taking several steps to address these challenges. First, we have invested in a public service campaign which will be aired more than 100 times on PBS. It will focus on the caregiver program and how caregivers can access services. Second, we are forming grassroots community caregiver coalitions to complement the upcoming PBS caregiver documentary, "And Thou Shalt Honor." This mini-series is designed to make more Americans aware of help available through the caregiver program. Third, we are working with a coalition of States, area agencies, tribal organizations and service providers to develop a national public awareness campaign. I want people to know that they are not alone and that help is available. I am excited about this outreach campaign and have challenged the national aging network to join us in getting the word out to every corner of the nation no matter how remote or disadvantaged.

    Our objective is to reach out to caregivers with information about local resources and recruit volunteers to support programs like meals on wheels and caregiver respite programs. We need to be more responsive to caregivers and their families by providing services that meet their needs. I am committed to working with you to support America's families.

    One of the greatest strengths of this country is that we are a compassionate nation with a strong spirit of generosity, with a commitment to help people of all walks of life now, and to pave the way for a better future for our children and grandchildren. The National Family Caregiver Support Program embodies this compassionate spirit.

    I would be happy to address any questions you have.

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Last revised: May 21, 2002