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.

Resources:

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

  • And please also remember to include the more than 1.3 million child caregivers ages 8-18 yrs among those providing care to our nation’s chronically ill, injured, elderly or disabled. The need special recognition and support so they can complete their education and grow up to be healthy productive adults.
    Thank you…

  • Thank you Dr. Siskowski- Great points, thank you for sharing!

  • Deborah Gregson

    I can’t quite understand why more money was being spent on assessing family caregivers instead of providing money that bolsters in-home caregiving respite programs. It does no good to “encourage states to provide referrals for supportive programs” when those programs don’t have enough money to provide support. Our local respite program has such a long waiting list they no longer place people on the list, and they only offer respite care for 4 hours a week, not nearly enough for full time in-home caregivers to get the help they really need.

    The new health plan, and the Natl. Alzheimer’s Plan both have millions of dollars dedicated to staffing, surveys, reports, administration to find out what caregivers needs are, but NOT ONE DOLLAR IS GIVEN TO PROVIDING CAREGIVERS WITH IN-HOME SUPPORT SERVICES.

    You could save a ton of money, years of work, countless lives if you would send about 12 people to 12 caregiver support group meetings in different parts of the country two months in a row and listen to what the people there say, then go back to your offices and find a simple way to solve their problems. If you took all the money that’s slated to be spent in the next 10 years on the research stuff and put it to providing in-home care respite support for caregivers, then you’d have a worthwhile plan.

    It’s not fair to tell people that they are being “helped” when all you are doing is assessing, making reports, encouraging states to share information, then having them report about the reports. That kind of garbage does NOTHING TO HELP IN-HOME CAREGIVERS TAKE CARE OF THE PEOPLE THEY CARE FOR. It’s just a lie, and we’re tired of being lied to.

    Deborah Gregson

  • Hello Deborah,

    Thank you for writing, you raise many excellent points. The bill that is mentioned in this blog posting is only draft legislation right now, and has not been enacted.

    Our local program (The Bay Area Caregiver Resource Center) also provides respite grants for in-home care and while they are helpful, our family consultants face the same issue of not enough hours for family caregivers. Dr. Dale Lund discussed some of the research on respite in a webinar last summer, and “sufficient amounts” was one of the important ways that we know makes respite effective.

    In terms of assessing caregivers, we believe that there are a number of reasons to assess caregivers. By conducting a caregiver assessment (whether it’s in Medicaid or in the National Family Caregiver Support Program- which is funded by the Older Americans Act), the caregiver is being identified and their needs are being discussed. We believe this is important because in many cases (e.g. a hospital discharge) there is an automatic assumption that the family member can, knows how to, and is willing to provide the care for their loved one. Through a caregiver assessment, a social worker can discuss these issues with the family caregiver and can connect the caregiver with resources like support groups, respite grants, Medicaid, Meals on Wheels, etc.

    Your point is excellent- if there isn’t funding for the programs that a caregiver is being referred to, then it’s not much help. We raised a similar point in our comments on the Draft Alzheimer’s plan and the “optional” nature of programs like Adult Day Health Care, which are put on the chopping block when state budgets are strained.

    Beyond connecting caregivers to resources, an assessment is also an opportunity to put some of the focus on the caregiver and their needs, when so often the focus is on their loved one.

    Finally, from a policy standpoint, if there is good data on the number of caregivers in a state (and the types of services they need or are requesting), that can create some political pressure to address family caregiver needs. There remains considerable room for improvement in how family caregivers are supported with services like in-home support services, Adult Day programs, respite breaks, etc. Richard Kaplan captured it best when he said that while family caregivers provide care “without charge,” this is not the same as “without cost.”

    Thank you for writing,
    Sean Coffey, MPA
    Policy Specialist

    PS: If you are interested in learning more about caregiver assessments, we have several great resources:

    1) Caregivers Count Too! which is an online toolkit that was developed as part of a national consensus conference on family caregiver assessments.

    2) Webinar: Caregiver Assessment I: Why and What Should We Assess?

    3) Webinar: Caregiving 101: Exploring the Complexities of Family Caregiving

  • SDeborah Gregson

    I appreciate your taking the time to write a response. I understand the points that you make and the fact that assessment has it’s purpose. I wish the process was faster. I think it’s like having been a college student who is so motivated and excited about effecting change that they dive into everything with gusto, then after years of butting their head up against a brick wall that barely moves they slide down and lay at the bottom of it realizing they don’t, and probably never will, have the bulldozer needed to move it.

    I think it’s time for me to sit by the wall for awhile and ponder what I’m going to do.

    Deborah

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