There are many initiatives underway across the nation to help family caregivers. They range from expanding insurance coverage to paying a stipend to the caregiver to offering a variety of services, but I’ve yet to find one that addresses a critical family caregiver concern; having someone available to provide occasional help and respite. Finding full-time or live-in help is profoundly difficult and expensive even with nearly 500,000 home care service provider companies spread throughout the nation. Finding occasional or part-time help to allow a family caregiver to run errands, go to dinner with a friend, or go on a short vacation is impossible — a model doesn’t exist that supports part-time assistance akin to baby or pet sitter services that are readily available. I think I have a solution:
It’s time to create the Family Caregiver Assistance Alliance (FCAA). The model is simple — allow students in nursing, occupational, and physical therapies undergraduate and graduate programs around the U.S. to spend up to 20 hours a week providing support to family caregivers while earning program credit, a better grade, or tuition grants. Think of this as hands-on training for the people who will deal with these ill children or adults over the course of their careers. Students will get to walk a mile in the shoes of a family caregiver and subsequently develop a greater understanding of and deeper empathy for both the caregiver and the loved one.
There are plenty of students across the country to service this need. The Commission on Accreditation in Physical Therapy Education (CAPTE) has more than 245 schools in its program. There are 2600 nursing schools, and there are about 170 occupational therapy educational programs.
What Services Will Students Who Are Enrolled in FCAA Provide?
Students will have to agree with the caregiver on exactly what they are expected to do, just as you would with a babysitter. Each situation is unique, each loved one has critical or special needs, and the agreement on coverage needs to set boundaries on what is and is not expected.
I’ll use my situation as an example: To recap, my wife is 54, 5’0″ tall, and about 145 pounds. She understands everything but has trouble speaking. Her motor control is poor so she isn’t able to do much on her own and spends most of the day in a wheelchair. She is both bladder and bowel incontinent.
If I wanted to get out of the house for an hour or so to run some errands or have lunch with a friend, I would want a student who can provide my wife with some companionship, help her transfer to/from seats, deal with emergencies, and help her with a meal, toileting or changing the television channel. If I were to go out for a longer period say, 6 hours to play golf (I can hope, can’t I?), then that just increases the odds of the student having to deal with a meal or a diaper change. Caregiving isn’t glamorous and it isn’t always fast-paced — you’re just helping someone else live their life. Longer outings add to the number of and complexity of the tasks that may be required. In my wife’s case, there aren’t any medical procedures that she requires but the student could use the longer visits to practice therapy skills. Importantly, just the act of engaging with a stroke survivor in my wife’s case will give the student a meaningful experience to use throughout their career.
Other caregivers with different situations will require different students. For example, a friend of mine who cares for her aging husband with advanced dementia would need a student strong enough to assist a 175-pound man with transfers or possibly a shower. It can all be negotiated in advance, and the pay (did I mention this wouldn’t be free?) would be commensurate with the expectations and experience.
Schools Should Consider FCAA as a Paid Internship
In addition to the benefits mentioned above, students should get paid for their time in situations where the family can afford to do so. Pay will vary based on geography — where I live I pay babysitters $15 – $20 an hour to sit for my daughter. I would expect to pay something comparable for my wife. This is actually about the same as if you hired an aide through an agency. If the family can’t afford to pay, there may be other sources of funding or the student could elect to provide the service gratis.
There is an organization called the Community Care Corps (CCC) that might serve as an organizational model for what I’m proposing. According to their website, “The Community Care Corps is a national, federally funded grant program that funds and evaluates innovative local models designed to provide volunteer assistance to family caregivers, older adults, and adults with disabilities to assist in maintaining independence by providing nonmedical volunteer assistance in home-based or community–based settings.” This program provides federal funds to select nonprofit organizations that provide non-medical care to older adults, adults with disabilities, and family caregivers.
There are many differences between NCAA and CCC but the two of the most important ones are that CCC grantees are specifically prohibited from providing any personal care including ADLs (activities of daily living), and the program services offered are all over the map – literally. Since funds are granted to existing nonprofits, services in your location are determined by what nonprofits are operating near you. There is no guarantee that any of the services would be available consistently nationwide. FCAA is a more specific, focused program designed to help family caregivers.
One thing I should discuss albeit briefly is why aren’t the home care service providers satisfying this need? At the risk of generalizing, home care service providers are looking for at least a half-day commitment, may need days or weeks advance notice to make someone available, and since the agencies act as middlemen, they inflate the cost to the family caregivers and reduce the income to the aide. If you are lucky, you may find a suitable aide through an agency or possibly an independent — I’m looking for a more reliable solution.
What Needs to Happen Next?
I think this proposal requires a two-pronged approach. The first step would be to start a pilot program with a willing educational institution. The initial plan could be as simple as finding a professor who is willing to make involvement a requirement of the course worth some portion of the students’ grade. Of course, there would need to be a mechanism for identifying and profiling potential family caregivers and families and assessing their performance. Certainly, there will be some legal and liability issues to work out, but the initial objective would be to do a proof of concept.
The next step would be to identify the appropriate educational institutions, government organizations, and nonprofit caregiver-related organizations that could scale the program nationwide. There are several good candidates who I hesitate to name at this time — I’d prefer to have more details available before engaging these organizations.
Most importantly, family caregivers need to find their voice and make the need for this type of support known to local educational institutions, state caregiver-related agencies, and each other. Tell me about your need for this type of service, and together we can start to define and develop the program.
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5 Replies to “A Plan to Help Family Caregivers”
👋Hi, I care for my disabled husband who is a fall risk and has diabetes, many other comorbidities, and little mobility with great pain. I want to visit my Mom out of state but the prospect of hiring a CNA while I am out of town is scary to me. Hubs is dependent on me for meal prep, help showering, getting clothes from the closet, and pain medication dosage. So far, he manages toileting by himself. This plan is a good start to something helpful for us caregivers. It’s something. I am wondering who I would contact in the local universities about this idea? Do you have an email form that I could send with this idea in writing? It is daunting to think about but we have to try to help ourselves.
Thank you for this blog. 😊
Hi Gloria, thank you for your comment. I’m sorry about your situation but I understand it all too well. I suggest just forwarding this post to your local university program chair. If you want to send your city & state to me at firstname.lastname@example.org, I can try to help you find suitable contacts in your area. Stay strong!
I too like that you are aware and have identified a place we all need, time to ourselves, Marc.
I have red your blog before and know you mean the very best for us caregivers.
My closest dearest friend is always in need, though enjoys his clinic community, immensely, and understands the ins and outs of his multiplicity of medical issues has complete control of poor decisions is at the stage where my presence, by obsession or possession, every moment of the day, outside the clinic community, of my time, is met with much concern with my not having any outlet, ever.
Though the very unfamiliar thought patterns have become all too familiar, tantrums, scenes and the like respite or having anyone try to spend time so I may rejuvenate is, quite simply, nonexistent.
It is very true having any outlet, grant or otherwise, would not be something I, personally, would trust anyone else, to be able to do, safely in our present circumstances but remain confident that with time and rest the outlook will be better for us.
Thank you for your time and wisdom. I have found strength just reading your blog.
We certainly need creative solutions for sure. In your proposal I’m wondering about insurance and liability issues as being a perceived barrier for this model? I don’t know enough about this and while I know people do devise private contracts with care staff these would be students and so in a bit of a different situation. Just something to think about.