The proposal, which would ostensibly cover both individual and group training, is recognition of the role family caregivers, also called informal caregivers, play in protecting the health and well-being of older adults. About 42 million Americans provided unpaid care to people 50 and older in 2020, according to a much-cited report. The proposal is also support for aging in place; by removing real barriers to family caregiving and encouraging family members and friends to take on care-giving roles, the proposal makes aging in place an even more attractive alternative to institutional care.
“We know from our research that nearly 6 in 10 family caregivers assist with medical and nursing tasks such as injections, tube feedings, and changing catheters,” Jason Resendez, president and CEO of the National Alliance for Caregiving told KFF News. "But fewer than 30% of caregivers have conversations with health professionals about how to help loved ones," he said. Even fewer caregivers for older adults — only 7% — report receiving training related to tasks they perform, according to a June 2019 report in JAMA Internal Medicine.
Nancy LeaMond, chief advocacy and engagement officer for AARP, after recounting her personal caregiving experience requiring that she and a caregiving son access library videos regarding caregiving, told KFF News , "[u]ntil very recently, there’s been very little attention to the role of family caregivers and the need to support caregivers so they can be an effective part of the health delivery system.”
Several details of CMS’ proposal have yet to be finalized. Notably, CMS has asked for public comments on who should be considered a family caregiver for the purposes of training and how often training should be delivered.
Many advocates favor a broad definition of who qualifies as a caregiver. Since several people often perform caregiving tasks, training should be available to more than one person. Moreover, since seniors sometimes reimburse family members and friends for assistance, being unpaid should not be a requirement. Advisors often counsel seniors needing care to make such payments in order to reduce the countable estate for Medicaid eligibility purposes, and to incentive engagement and advocacy for the senior's best interest.
Other advocates raised their concerns with KFF News:
As for the frequency of training, a one-size-fits-all approach isn’t appropriate given the varied needs of older adults and the varied skills of people who assist them, suggested Sharmila Sandhu, vice president of regulatory affairs at the American Occupational Therapy Association. Some caregivers may need a single session when a loved one is discharged from a hospital or a rehabilitation facility. Others may need ongoing training as conditions such as heart failure or dementia progress and new complications occur, Kim Karr, who manages payment policy for AOTA, told KFF News.
When possible, training should be delivered in a person’s home rather than at a health care institution, suggested Donna Benton, director of the University of Southern California’s Family Caregiver Support Center and the Los Angeles Caregiver Resource Center. All too often, recommendations that caregivers get from health professionals aren’t easy to implement at home and need to be adjusted.
Judith Graham, writing for KFF News reported that some are, nonetheless, skeptical.
For her part, Cheryl Brown, 79, of San Bernardino, California — a caregiver for her husband, Hardy Brown Sr., 80, since he was diagnosed with ALS in 2002 — is skeptical about paying professionals for training. At the time of his diagnosis, doctors gave Hardy five years, at most, to live. But he didn’t accept that prognosis and ended up defying expectations.Today, Hardy’s mind is fully intact, and he can move his hands and his arms but not the rest of his body. Looking after him is a full-time job for Cheryl, who is also chair of the executive committee of California’s Commission on Aging and a former member of the California State Assembly. She said hiring paid help isn’t an option, given the expense.
And that’s what irritates Cheryl about Medicare’s training proposal. “What I need is someone who can come into my home and help me,” she told me. “I don’t see how someone like me, who’s been doing this a very long time, would benefit from this [training]. We caregivers do all the work, and the professionals get the money? That makes no sense to me.
Of course, concern regarding systemic over-reliance upon institutional care is valid; systems do not reform easily. There are other reasons for concern, too. For example, indoctrinated "trainers" may oppose aging in place for some, and may resist non-traditional treatments and therapies in conjunction with or as alternatives to the traditional. The new cadre of voices and eyes will, no doubt, sometimes over-reach and interfere with individual autonomy and reliance upon family and friends. The flip side, of course, is that these eyes and ears can report legitimately unsafe, abusive, or exploitative situations providing vulnerable seniors additional protection.
Regardless, the proposal is a welcome step in the direction of aging of place as a legitimate alternative to institutional care. No doubt there is more work to be done, including financially supporting home caregivers who could, in many cases cost a fraction of the cost of institutional care, and secure better health outcomes.
If you’d like to let CMS know what you think about its caregiving training proposal, you can comment on the CMS site until 5 p.m. ET on Sept. 11. The expectation is that Medicare will start paying for caregiver training next year, and caregivers should start asking for it then.
Article Largely Based On: Judith Graham, "A New Medicare Proposal Would Cover Training for Family Caregivers," KFF Health News (August 18, 2023, last accessed 8/27/2023).
