$153,000,000 for 600,000?

Denise
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.

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