107th Congress

National Family Caregiver Support Program --- Hearing Before the Senate Special Committee on Aging --- May 17, 2001

Members Present

Chairman Larry Craig (R-ID); Ranking Member John Breaux (D-LA); Senator John Ensign (R-NV); and Senator Jean Carnahan (D-MO).

Witnesses:

Panel One: Norman Thompson, Acting Principal Deputy Assistant Secretary for Aging, Administration on Aging (AOA), U.S. Department of Health and Human Services (DHHS).

Panel Two: Helen Hunter, widow of the late Jim "Catfish" Hunter and member of the Jim "Catfish" Hunter ALS Foundation, and Sandy Tatom, a family caregiver from Boise, Idaho

Panel Three: Suzanne Mintz, President, National Family Caregivers Association; Deborah Briceland-Betts, Executive Director, Older Women's League (OWL); and Kristin Duke, Executive Director, Cenla Area Agency on Aging, Alexandria, Louisiana.

Summary:

Purpose of Hearing: The hearing was convened to discuss implementation of the new National Family Caregiver Support Program (NFCSP), which was authorized during the 106th Congress by passage of the Older Americans Reauthorization Act. The NFCSP was established to provide grants to the states to provide information and services to family caregivers.

Opening Statements: Senator Craig expressed his hope that NFCSP will help the people it is intended to assist and that funds will go to providing services rather than to administering the program. Senator Breaux expressed his concerns about a situation in Louisiana in which the state is using existing senior service program dollars, rather than new state money, to meet the 25 percent matching funds requirement under the NFCSP. Senator Breaux stated that it was not the intention of Congress to siphon money away from existing programs in order for the states to qualify for NFCSP funds. Senator Ensign expressed his support for the NFCSP program and his hope that the program will eventually serve family caregivers who are caring for people of all ages.

Statements of Witnesses and Questions:

Panel One: Mr. Thompson testified about the steps AOA has taken to implement the NFSCP. Mr. Thompson stated that DHHS has authorized the release, thus far, of $113 million to the states and $5 million to American Indian tribes to assist caregivers of Native American elders. Based on input from policy makers, caregivers, and public forums, AOA has designed the NFCSP to be as flexible as possible to meet the diverse needs of family caregivers. AOA is also designing a variety of tools, such as videos, e-mail list-serves, and documents, and planning a national conference to assist the states with implementation of this program. In the next year, the AOA plans to develop partnerships with other DHHS agencies and outside organizations to further its caregiving agenda and to implement a public awareness campaign to inform America about the importance of caregiving and the NFCSP.

Questions: Senator Craig asked how the AOA would monitor the program's progress and outcomes. Mr. Thompson said that the agency would report the program's success via the Government Performance Review Act (GPRA) process and maintain a dialogue with the states regarding their implementation experiences. Senator Craig also wanted to know how the AOA would be receiving input in the future. Mr. Thompson stated that through conferences, public forums and its interactions with other agencies, the AOA would gather information. The AOA is particularly interested in seeking research-based results and reporting best practices to the states.

Senator Breaux asked what kind of guidance the AOA is developing to assist the states with meeting the 25 percent matching funds requirement. AccORDing to Mr. Thompson, the AOA will be issuing regulations to help clarify this matter as well as developing a NFCSP guidebook. Senator Breaux asked if respite care is being provided under the NFCSP. Mr. Thompson stated that respite care is one of the program's five critical service components. In conclusion, Senator Breaux urged the AOA to continue to work with the states and to maintain flexibility as it proceeds with its implementation plans.

Panel Two: Panel Two highlighted the experience of two caregivers, Ms. Helen Hunter and Ms. Sandra Tatom. Ms. Hunter spoke on behalf of the ALS Foundation. She emphasized the importance of not only finding a cure for ALS, but also of providing support to those affected by this disease. Ms. Tatom spoke about her personal experience as a caregiver to her mother-in-law. She said that her family would benefit from a service that could provide them with assistance on an as-needed basis (such as a dial-a-nurse or dial-a-caregiver service). She asked Congress to support funding for the NFCSP.

Questions: Senator Craig asked Ms. Hunter how she and her husband would have benefited from the NFCSP. He then asked Ms. Tatom and her husband to describe how their lives have changed since they became family caregivers. He also asked for their input on what a basic caregiving class would include. Ms. Tatom stated that caregivers need more information about what an individual's needs are at different stages of care. She feels that family caregivers also need good advice about which products to purchase. Senator Breaux asked the Tatoms if their local area agency on aging was available to provide assistance. Ms. Tatom stated that there is an area agency on aging in their hometown; however, it cannot provide the 24-hour service that she and her husband feel they need as family caregivers.

Panel Two: Panel Two highlighted the experience of two caregivers, Ms. Helen Hunter and Ms. Sandra Tatom. Ms. Hunter spoke on behalf of the ALS Foundation. She emphasized the importance of not only finding a cure for ALS, but also of providing support to those affected by this disease. Ms. Tatom spoke about her personal experience as a caregiver to her mother-in-law. She said that her family would benefit from a service that could provide them with assistance on an as-needed basis (such as a dial-a-nurse or dial-a-caregiver service). She asked Congress to support funding for the NFCSP.

Questions: Senator Craig asked Ms. Hunter how she and her husband would have benefited from the NFCSP. He then asked Ms. Tatom and her husband to describe how their lives have changed since they became family caregivers. He also asked for their input on what a basic caregiving class would include. Ms. Tatom stated that caregivers need more information about what an individual's needs are at different stages of care. She feels that family caregivers also need good advice about which products to purchase. Senator Breaux asked the Tatoms if their local area agency on aging was available to provide assistance. Ms. Tatom stated that there is an area agency on aging in their hometown; however, it cannot provide the 24-hour service that she and her husband feel they need as family caregivers.

Panel Three: Ms. Mintz congratulated the Congress on passage of NFCSP. She urged the program to focus on providing services. She also asked the Committee to support S. 627, the Long Term Care and Retirement Security Act of 2001. She believes this bill would complement the NFCSP by providing a tax deduction for the purchase of long-term care insurance and a $3000 tax credit to family caregivers.

Ms. Briceland-Betts featured the findings of a recent OWL report, "Faces of Caregiving." The report reiterated that women provide the majority of informal caregiving work. Among the recommendations, the report asks Congress to increase funding for federal and state programs that assist informal caregivers, expand the Family and Medical Leave Act, and modify the Medicare program to support informal caregiving.

Ms. Duke spoke about Louisiana's experience with implementing the NFCSP. She expressed her concern about restrictive regulations the state has issued and how these regulations have delayed her agency's plans to make funding available. She also criticized Louisiana's decision to transfer money from existing state funds that were used for other aging services, such as transportation and meals, to meet the 25 percent matching requirement for the NFCSP. These obstacles mean that caregiver support services will not be available in Louisiana until October.

Questions: Senator Breaux expressed frustration with the experience that Ms. Duke described and stated this was not Congress' intent when it devised the program. Senator Craig asked Ms. Briceland-Betts and Ms. Mintz to identify the most pressing needs facing caregivers. Ms. Mintz stated that family caregivers need assistance in assessing their own individual service needs. AccORDing to Ms. Briceland-Betts, family caregivers need better access to information and training.

Prepared by Mary Jo Hoeksema/NIA