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Day 17: Assessing the Needs of Family Caregivers: An Outlook from Capitol Hill

November 17, 2011

By Senate Special Committee on Aging, Majority Staff

Despite their large numbers, family caregivers remain at the margins of our health and aging services system. It is time to give a voice to the 44 million people who provide long-term care to frail elders and disabled Americans. As the Baby Boom Generation moves into retirement, the need to rely on voluntary care will only increase.

Although this community provides an estimated $450 billion annual contribution to our economy, we have not sufficiently sought to determine their needs and how we can support them. Many of these family caregivers work and have children, yet they are rarely asked by health and social services providers about the support they need to provide ongoing, consistent care. This finding, from a nationwide survey conducted by Family Caregiver Alliance in 2004, showed that fewer than half (47%) of all state administrators for home and community-based programs (including National Family Caregiver Support Programs, Medicaid Waiver and State-funded programs) uniformly assess family caregivers’ needs in addition to assessing the needs of the care recipient.

We can do better.

Earlier this month, Senators Kohl (D-WI) and Mikulski (D-MD) introduced a bill to more effectively support frontline advocates and family members who provide care and services to older adults. The Strengthening Services for America’s Seniors Act (S. 1819) seeks to ensure that family caregivers are recognized and referred for services simply by asking them: “How are you and what do you need?”

The bill focuses on assessing family caregivers for two main reasons. First, caregivers need access to basic support in order to avoid earlier – and more costly – institutional placements of frail elders. Secondly, and equally as important, caregiving itself is associated with physical strain, psychological stress, and financial burdens, making caregivers a vulnerable population. Specifically, our bill:

•Creates a voluntary state program through the National Family Caregiver Support Program and Aging Disability Resource Centers to assess family caregivers through a series of targeted questions to determine whether he/she would benefit from services (e.g., counseling, respite care).

•Encourages states to provide referrals for supportive services for family caregivers that may be available from local, state and private-sector programs.

•Requires participating states to report information on the caregivers assessed under the program to the Administration on Aging.

The reauthorization of the Older Americans Act is gaining momentum in the Senate and offers a prime opportunity to make a significant difference in the ability of families to provide the care that frail elders and individuals with disabilities need to remain at home. S. 1819 already has broad support from the Leadership Council of Aging Organizations, a 66-member association of national aging organizations. We hope you will join our efforts to include this important piece of legislation in the OAA reauthorization package.


1) Text of Strengthening Services for America’s Seniors Act

2) Thomas.Gov Page for Strengthening Services for America’s Seniors Act (includes timeline, sponsors, etc)

3) United States Senate Special Committee on Aging Web site

4) Older Americans Act Reauthorization Web Site

5) FCA’s Legislative Center: Summary of Strengthening Services for America’s Seniors Act

6) FCA: “Why Assess Family Caregivers?” (Part of Caregivers Count Too! An Online Toolkit to Help Practitioners Assess the Needs of Family Caregivers)

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Day 17: Assessing the Needs of Family Caregivers: An Outlook from Capitol Hill by By Senate Special Committee on Aging, Majority Staff is licensed under a Creative Commons Attribution-NoDerivs 3.0 Unported License.