Let's Pledge to Fund the Family Caregiver
Too many dollars are wasted on research and bureaucracy. Let's pledge to directly fund family caregivers.
This spring, I worked with two partner organizations to submit a proposal to receive $3.2 million dollars in funding to create a training program to work with community-based organizations and aging and disability service providers to increase the involvement of older adults with behavioral health needs in community-based, evidence-based programs. (Yes, this is the actual grant description.)
Last week, we learned that we didn’t receive funding. It was not a disappointment or a surprise as our submission was a long shot. I submitted because a colleague encouraged me “to be in the game” so these funders are aware of my work. I also am always looking for opportunities to hire graduates of my Certified Caregiving Consultant training program.
As we put together our proposal, one of our partner organizations (a university professor) did some due diligence about why health care professionals don’t use these evidence-based programs to support older adults. Some are too expensive for community-based organizations and some just seem to miss the mark in terms of making a difference.
It’s interesting that funding has been allocated to basically promote these programs which professionals have intentionally decided not to use. Perhaps the problem could be the programs themselves.
I also learned something else during our proposal process: Our university partner had a federal contract that allows the university to take 40% of its portion of its budget for any project funded. For instance, if the university professor needs a $1 million budget to fulfill her scope of work for a $3 million project, then the university will take $400,000 of the total project budget. The idea seems to be that the university supports the project by making its resources available to the professor and the project.
This grant proposal was fresh on my mind while I read three recent articles about caregiving:
Caring for aging parents can strain everyone’s finances. Plan now
U.S. caregivers face worsening of their own health challenges
Family caregivers are in crisis. Yet, we’re not providing funding to directly help them. We’re instead funding opportunities like the one we didn’t get. One could argue we’re funding another layer of bureaucracy with those kinds of grants.
The articles about family caregivers in crisis reminded me of this recent retirement announcement from an AARP employee who conducted research. In her LinkedIn post announcing her retirement, she references “more than $50 million in external funds secured to support family caregiving, workforce, and the LTSS State Scorecard.”
That is an astronomical amount of money. I have yet to connect to a family caregiver who said, “My life is so much better because of research conducted by AARP.”
We fund research and researchers. We don’t fund family caregivers. That decision means we keep family caregivers in an overwhelming, life-sucking struggle.
In 2010, I suggested that 30% of all research dollars be automatically funneled to help today’s family caregivers. Obviously, that hasn’t happened. Thirteen years ago, it seemed crazy to think of asking for 30% of funding to directly support family caregivers.
Now, knowing about that 40%, it seems we’re just asking for a piece of the pie like everyone else.
Let’s do it.
Let’s push any organization that receives funding to research the caregiving experience to also fund a Family Caregiver Relief Fund so family caregivers they can hire help and get a break. Even if grant money can’t be donated, researchers can donate a percentage of their salaries. (I’ll share more in future weeks about the Family Caregiver Relief Fund we’ve established. I’ll also keep you posted on social media campaigns to push organizations and researchers to pledge to fund family caregivers.)
Throughout the years I’ve supported family caregivers, I’ve raised money to send $500 to family caregivers in need. I provided cash grants to family caregivers so they could travel to the National Caregiving Conference I hosted between 2016 and 2020. I regularly award scholarships to individuals who want to enroll in my training programs. This is a hard space to operate for anyone who isn’t a researcher; I still figured out a way to directly help family caregivers.
For many years, I have believed that money exists to help family caregivers. It just that money gets diverted to support academia and researchers but not family caregivers.
Let’s work to change that. Researchers make money because of us. Let's take our cut.
(Image by Barta IV from Pixabay.)
Resources
Here’s the pledge I’ll promote to organizations and researchers.
Read more of my ramblings about caregiving research including a post from 2021 (We Need to Invest in Family Caregivers) which takes a closer look at two grants which received $5 million in funding. You also may be interested in a 2022 post called Family Caregivers Need Necessities; Investors Fund the Luxuries.
Join us a volunteer Listener or Story Teller for our next Caregiving Listener Project, which happens on October 10.
just sent you an email message (some extra information is on there that I can't place here), but yes, we need help bad!! I am tired of the sleepless nights from being so broke, tired of relying on family to fund me when they can't, tired of being physically tired from the caregiving. Let's get our voices HEARD!!!