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$153,000,000 for 600,000?

As you know, I’m working to get the word out on our volunteer initiative; we’re recruiting former family caregivers to volunteer to help today’s family caregivers. We’ve got a press release, here, which G-J and Bette have been helping to distribute. (Wanna help, too? Send me an email and I’ll send you the details.)

In the press release, I explain how hard it can be to find help. To prove my point, I checked out stats on the National Family Caregiver Support Program (NFCSP). The program, established in 2000, receives its funding through the U.S. Administration on Aging (AoA). On its website, AoA says that the NFCSP “provides grants to States and Territories, based on their share of the population aged 70 and over, to fund a range of supports that assist family and informal caregivers to care for their loved ones at home for as long as possible.” NFCSP helps family members caring for persons 60 years of age and older, regardless of income. If your caree is over 60 and you need help, NFCSP could be a resource for you. (If your caree is under the age of 60, you are out of luck.)

In essence, the states receive funding, then funnel the money to the local Area Agencies on Aging (AAA). You have a local Area Agency on Aging in your community. (You can go here to find yours.) The local AAA may offer programs like Meals on Wheels and senior nutrition sites.

To help family caregivers, the AAAs receive funding to provide the following services:

1. Information about available services,
2. Assistance in gaining access to the services,
3. Individual counseling, organization of support groups, and caregiver training,
4. Respite care, and
5. Supplemental services, on a limited basis.

According to AoA’s website, NFCSP served more than 600,000 caregivers in FY2008, the most current year with program data. Specifically:

1. Access Assistance Services provided approximately 1.3 million contacts to caregivers assisting them in locating services from a variety of private and voluntary agencies.
2. Counseling and Training Services provided over 141,000 caregivers with counseling, peer support groups, and training to help them better cope with the stresses of caregiving.
3. Respite Care Services provided more than 73,000 caregivers with 9.8 million hours with temporary relief – at home, or in an adult day care or institutional setting – from their caregiving responsibilities.

The budget of $153,439,000 provided 73,000 family caregivers with 9,800,000 hours of respite. That means each family caregiver received an average of 134 hours per year. Or 5.5 days of 24/7 respite per year. Or 2.5 hours of respite per week for one year. Or 11.2 hours of respite per month for a year.

I’ve written (well, actually, ranted) in the past about how money is used and family caregivers are helped (see the links to articles, below). This one really confuses me. I think we can safely say the program is horribly underfunded. But, if only 600,000 family caregivers receive help, is the program also poorly administered?

Bear with me as I do the math (and please correct me if you see any errors). National Alliance for Caregiving estimates the total figure of U.S. family caregivers to be about 66 million. (Read a recap of the latest survey of family caregivers here.) This figures includes caring for individuals under 60 years of age, like spouses and children. Seven in ten care for someone over age 50.

For our purposes, let’s conservatively say that 33% of the 66 million care for someone over 60, making them eligible for NFCSP. That’s about 22 million family caregivers. Only 600,000 were served through NFCSP. That’s only about 3% of the 22 million family caregivers. (I’m assuming that some of the 600,000 received duplicate services, i.e., called for referrals, attended a caregivers conference and received a break which is why 1.3 million plus 141,000 plus 73,000 does not equal 600,000.)

And, only 73,000 family caregivers received a break. Only .3% (yes, less than 1%) of 22 million family caregivers received respite through a program that’s funded through their tax dollars.

The 73,000 received 9.8 million hours of relief. I’m struggling to do the math with this one. If each hour of respite cost an average of $20, then the respite budget ($196,000,000) is greater than the program’s total budget ($153,439,000). If the average cost per hour of respite care is $10, then the respite budget is $98,000,000, leaving $55,000,000 of the program for referrals and training?

I really can’t get my head around this one.

I’d love know:

1. What’s the administrative cost to operate the program?

2. How often do family caregivers call for help but not receive any?

3. Which respite service is used most often? Adult day centers? Home health? Nursing homes?

4. How many family caregivers does AoA want to reach through the program? If they don’t reach this number, why not? Which corrective actions can solve the problem?

5. Do any of the AAAs have a waiting list of family caregivers who need help?

6. How do the AAAs account for how they use the program funds?

It would be helpful if AoA included answers to questions like these on its website. An honest assessment of the program could go a long way to improving it. An improved program means more family caregivers get help.

In our annual family caregiver survey, we ask family caregivers if they are happy with services in their communities; in 2011, just about 55% said they are. We also asked which services they’d like to see more of in their communities. “Financial aid for caregivers” topped their list, followed by support groups, caregiver conferences and counseling services.

What do you think? What’s been your experience when calling your Area Agency on Aging for help? Have you received help through the Family Caregiver Support Program? Please share your experiences in our comments section, below.

Additional Commentaries

A Theme for You
Inside the Community of Caregiving
Do We Need a POA for Love?
Losing My Cool Over Research
What If We Also Invested in People
When Researching for Tomorrow, Pay for Today’s Help

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About Denise

Profile photo of Denise
I began working with family caregivers in 1990 and launched in 1996 to help and support them. Through my blog, I share words of comfort and offer coping strategies and tips. I also write opinion pieces about recent research, community programs and media coverage of caregiving issues. I've written several caregiving books, including "The Caregiving Years, Six Stages to a Meaningful Journey," "Take Comfort, Reflections of Hope for Caregivers" and "After Caregiving Ends, A Guide to Beginning Again." You can purchase my books and schedule a coaching call with me in our store.

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  1. Profile photo of Natalie

    Oh this definitely sounds like a government agency! I’ve spent the past two years working with various agencies for various reasons and have found them ALL to be poorly run and underfunded in regard to benefiting the consumer.

    We haven’t used any of the caregiver services but we’ve received so little help in regards to occupational rehabilitation. We talk to very pleasant people who have tons of pamphlets and lots of well wishing but have yet to see any real help. It’s very frustrating especially knowing that my tax dollars are really being wasted and used inappropriately.

    BTW, that is a lot of math! ( :

  2. As the Caregiver Program Coordinator at AgeOptions (the Area Agency on Aging of suburban Cook County, Illinois), I would like to respond to the above blog entry. The National Family Caregiver Support Program is very modestly funded given the numbers of caregivers in the nation and their extremely important roles. Your blog questions the effectiveness of the program based on the $153 million line item in the Administration on Aging budget. In fact you have missed the impact of the program and its significance in our communities.

    Each Area Agency’s caregiver support program is required to provide “match” for the federal dollars. This match can include dollars from municipalities, local United Ways, as well as private foundations and individual and corporate donors. Each caregiver support program is also required to collect “project income” by requesting donations from those who receive our services. Many Area Agencies on Aging and states also supplement the federally funded services with volunteer-based services and/or services funded by states or other sources. AgeOptions, for instance, recently completed a demonstration project addressing caregiver depression with the Healthy IDEAS evidence-based program. We also developed a grassroots partnership with African-American churches and community organizations to develop volunteer-based services for caregivers, funded by the Harry and Jeanette Weinberg Foundation’s Family and Informal Caregiver Support Program. These volunteer services include respite care, meal delivery, transportation, support groups, education and more, which the organizations are committed to sustaining beyond the end of the grant period, without AgeOptions funding. The Weinberg Foundation also funded 13 other innovative caregiver support programs across the nation with similar, three-year grants awarded in 2009. AgeOptions also received a Legacy Corps grant from the University of Maryland to supplement our volunteer respite program. Our 12 Legacy Corps members have already provided more than 2,000 hours of respite care in just over half a year.
    The caregivers served by alternately funded programs such as the Weinberg Foundation and University of Maryland programs are not counted in the Administration on Aging figures cited in the blog, meaning that the aging network is reaching more than 600,000 caregivers.

    The fact is that our program works. We successfully reach a large number of very isolated individuals and we have leveraged our limited federal dollars to bring in additional funds that help us reach many more caregivers. We are pushing to inform caregivers that they are not alone and that there are ways to reduce their burden and increase their capacity to provide quality care. The resources available are small considering the giant responsibilities we place on them. If you take away an Older Americans Act National Family Caregiver Support Program, Medicaid and all of the income and health care poverty associated with that program will possibly the only way to help caregivers. The math on this type of situation is much more discouraging than the simple calculation of reported client numbers vs. appropriation line item presented in your blog. We are very proud of our program, the families we serve and our partners throughout suburban Cook County. Our goal is to reach all caregivers, but also to have the resources and services to make their lives significantly better.

    • Profile photo of Denise

      Hi Sarah! I’m so glad you commented. Your information is sooo helpful to know.

      I guess I’m still looking for a better understanding of the math. Could you give us an idea of how many family caregivers you serve and the size of your budget? Do you have family caregivers on a waiting list to receive your services? And, how do you reach family caregivers in Cook County? (I’m also in the Chicago area.)

      I also wonder: How do you define success for your program?

      • Profile photo of Denise

        Oops… I have two more questions, based on feedback we receive from our annual family caregiver survey:

        1. How many support groups do you offer? (Respondents to our survey say they want more support groups.)

        2. How often do you hold a caregiving conference? (Respondents also would like to see more caregiving conferences.)

        Thanks again for joining in the discussion!

      • Currently, our network provides 20 caregiver support groups in suburban Cook County. A few are specialized for dementia caregivers, etc., but most are open to any caregivers of older adults. We also keep a list of support groups in our area conducted by other organizations, to give to caregivers who cannot make our support group meetings.

        We co-sponsor caregiver conferences occasionally but have gotten more positive caregiver feedback from smaller events in local communities because they can happen more frequently and closer to each caregiver’s home. We try to make our services as responsive as possible to suburban Cook County caregivers.

        • Profile photo of Denise

          Hi Sarah–This sounds terrific.

          What would help you most as you work to reach family caregivers? What would you help you double the number of respite hours from 2,000 in six months to 4,000?

  3. Our goal is to reach as many caregivers as possible and provide them with the information and resources they need to continue to provide quality care while also caring for themselves. Our network served over 200,000 older adults and caregivers in our most recent fiscal year. While our agencies do not currenlty have waiting lists, they do have to budget very carefully to ensure that each caregiver receives services. The Older Americans Act requires that we give priority to caregivers of people with dementia and caregivers with greatest social and economic need, so we take that into account, as well.

    Our outreach takes many forms (flyers, health fairs, building relationships with potential referral sources, e-blasts, websites and other electronic means, etc.) For our Weinberg-funded project we also placed radio, newspaper and coupon book ads, distributed fans to churches and held informational lunches with hospital discharge planners. We reach many caregivers through word of mouth, as well. We also send out press releases and have had “positive press” in La Raza, the Tribune and other local media outlets. We are always glad when advocates, reporters and others mention the caregiver services at area agencies on aging. Ask Amy even mentions AAAs from time to time. Thank you for your role in helping caregivers realize that we are here to assist them.

  4. Profile photo of Denise

    Hi Sarah–I, too, refer family caregivers to AAAs and have been doing so for years. I suggest family caregivers contact AAAs during my one-on-one coaching sessions, in my books (The Caregiving Years and The Working Family Caregiver) and when family caregivers write to me for advice.

    Because I do, I’d like to understand more about the program’s success.

    One of our bloggers, Bette, called her AAA in the fall of 2009. She was completely burnt out and in need of a family caregiver support group. Her AAA told her there wasn’t a support group. So, she turned to the Internet and found us. In the summer of 2011, she started her own local support group because she understood the need. The group began with three participants and has grown each month. It really and truly is a success in her community.

    This kind of experience with a AAA (which is not uncommon) concerns me.

    I worked for the New Jersey Statewide Respite Care program in a small county (Hunterdon) in 1990. As program coordinator, I knew how many family caregivers I served and the amount of funding I received.

    When I hear that 2,000 respite hours were given in six months, I honestly think, “That’s a start.” My other concern, then, is that AgeOptions is at a starting point with a respite care program after receiving 12 years worth of funding to provide respite care.

    Could you tell us how many family caregivers you serve in your program (not older adults, just family caregivers) and how much funding you receive to serve family caregivers?

    I truly believe that you are doing a wonderful job, Sarah. And, I’m very grateful you’ve engaged in the conversation. I’m really just trying to understand the math. I also really am wondering what you need in order to reach more family caregivers.

  5. Often caregivers need the most support and help when they have the least amount of energy.

    Although pamphlets and letters are nice to receive and look at, it’s the voices and willingness behind the voices, to go the extra mile – that welcome a caregiver to ask for a service, to ask for help.

    I have a friend who called her AAA for help. She’s in her early 80’s – her husband is in a wheelchair; she needed help with something in her home. She was told there was no funding for the help she needed. No alternatives given. She’s hesitant to ask an organization again for help.

    Since December 2010, I’ve been calling AAAs in my state to share with them – a support and resource that means so much to me, as my husband and I and three children continue to care for my mother.

    Thus far, I’ve contacted 50 AAAs.

    Out of the 50, ten percent of the responses made me feel as though the call was an imposition. Fourteen percent welcomed my call with open arms; they were kind and grateful. They knew where the need was and who to share this valuable resource with. The remaining calls were uncomfortable. The person answering the phone wasn’t sure who to direct me to for family caregivers or where this information would best be used – many times this was where the call became silent.

    Caregivers are real people – I hope the resources become real for them; that the opportunities available are ones that are well explained and openly given.

    If a resource cannot be given, a caregiver may find hope in an alternative being offered.

    • Profile photo of Denise

      Hi Bette–First, I am sooo grateful that you want other family caregivers to know about It’s just terrific that you make these phone calls.

      So… The bottom line is that you only had a positive experience with seven of the 50 AAAs that you contacted. That’s not good.

      I agree with your suggestion that the AAA staff share suggestions on other alternatives if they themselves don’t offer help what a family caregiver needs. In our annual family caregiver survey, a few family caregivers said they wanted a community organization that acts like a clearinghouse of information. A AAA could be this clearinghouse, directing family caregivers on how and where to get help. The agency’s website could also be a community clearinghouse.

      And, Bette, thanks so much for taking notes on your phone calls. :)

      • When you say that 2,000 hours of respite is a start, you are certainly correct. I do want to clarify that that is a very tiny portion of AgeOptions respite program. Those are only the hours provided by 12 volunteers over less than one year. Through the traditional respite program funded by the Older Americans Act we provided over 27,500 hours of respite care across suburban Cook County last fiscal year. At any rate, I can tell you have a lot of great ideas for improving caregiver services. Since you live in the Chicago area, let’s schedule a time for you to come and talk more in depth with us at AgeOptions about some of your ideas.

  6. Profile photo of Roaring Mouse

    As you know…this question I posted to my community of contacts. It was a bit above me…but I understood you had trouble making the numbers work.

    Here are responses from one of my contacts in Georgia:
    The NFCSP legislation is part of the Older American’s Act from the 1960’s, which is the main source of funding for community-based programs for older adults, age 60 or older. The specific part of the legislation is Title III-E, if you want to look it up.

    To put it into some sort of context, prior to the year 2000 there was NO funding for family caregivers of those people caring for an older adult. Our focus was always on the person needing direct care and not the person caring for them. In had taken 10+ years of advocacy to get that legislation added to the Older Americans Act. In the first years after the legislation was passed (and even today) there was a lot if internal education needed among staff, to help them understand that caregivers need support services, too! In addition, most caregivers did not think of themselves as “caregivers”, so they were not looking for services for themselves. I would frequently hear people say, “Oh I’m not a caregiver, I’m just being a good wife (daughter, son, friend, etc. . . .).

    Obviously a lot has changed in 12 years. The flow of federal $$$ for aging programs goes like this: first the money goes to the states.In our case, it is the Ga. Dept. Of Human Services. Then the state contracts with the Area Agencies on Aging to deliver the services. Because the Atlanta AAA serves such a densely populated area, we contract with each of the 10 counties to deliver the services. The only service we keep “in house” is information and assistance. In Gwinnett, for example, we contract with Gwinnett County Senior Services to deliver the services. Across the state we have 12 area agencies on aging.

    Each AAA is to have one person who works with the caregiver program (NFCSP). At ARC, I am that person. It is rare, however, for an AAA to have one dedicated person, who works solely on caregiver programs.

    The 6 questions raised at the end of the article are excellent. I will do some research and get back to you with as much detail as possible.

    Thanks for passing this along to me!

    Mary LouMary Lou B. Vergara, MSW, M.Div.
    Caregiver Program Coordinator
    Atlanta Regional Commission – AAA
    40 Courtland Street, NE
    Atlanta, Georgia 30303
    Ph: 404-463-3524

    She then sent me later that day…:

    I found this on the Administration on Aging website. Looks like the Title III-E data collection for a national evaluation began in FY2010.

    Mary Lou

    —I hope this helps the research you are doing. I am very grateful to Ms. Vergara for getting me this information…which I also received her “okay” before posting here.

    On a personal note…in my 6 year caregiving journey I’ve only had the equivalent of three days off. Two were for delivery of our daughter and one day was for going 4 hours away to receive a caregiver award. Here are the reasons I don’t get 24 hour respite periods…
    My husband is not elderly, we make too much, our daughter isn’t disabled …or we get referred to a program we need to pay for …which of course we can’t afford on our 60% income.

    I am very thankful however for people like Mary Lou and her counterpart who introduced me to her as they were the reason why I got the award and behind the scenes are always trying to coming with services that might be able to help.

    A Caregiver’s Clearinghouse is a great idea…and would love to see one so I can pass it around to others!

    Hope this helped in some small way!

    The Roaring Mouse


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