A new Medicare proposal would cover training for family caregivers

Even with extensive caregiving experience, Patti LaFleur was unprepared for the crisis that struck in April 2021 when her mother, Linda LaTurner, fell from a chair and broke her hip.

LaTurner, 71, was diagnosed with early onset dementia seven years ago. For two years, she lived with LaFleur, who managed her mother’s type 1 diabetes insulin shots, helped her bathe and dress, managed her incontinence and made sure she was eating well.

In the hospital after her mother’s hip replacement, LaFleur was told her mother would never walk again. When LaTurner got home, two emergency medical technicians carried her on a stretcher into the living room, placed her on the bed LaFleur had set up, and wished LaFleur well.

That was the extent of the help LaFleur received in her mother’s discharge.

She didn’t know how to change her mother’s diapers or dress her since LaTurner could barely move at this point. She didn’t know how to turn her mother, who spent all day in bed to avoid bedsores. Even after an occupational therapist visited a few days later, LaFleur continued to face concerns she wasn’t sure how to handle.

“It’s already extremely challenging to be a carer for someone living with dementia. Not having the training to take care of my mother just made the impossible job even more impossible,” said LaFleur, who lives in Auburn, Washington, a suburb of Seattle. Her mother died in March 2022.

A new proposal from the Centers for Medicare & Medicaid Services addresses this oft-complained failure to support family, friends and neighbors who care for the frail, sick and disabled elderly. For the first time, it would allow Medicare payments to health care professionals to train informal caregivers who manage medications, help loved ones with activities such as toileting and dressing, and supervise the use of medical equipment.

The proposal, which covers both individual and group training, is a long overdue recognition of the role that informal carers – also known as family carers – play in protecting the health and well-being of older people. About 42 million Americans provided unpaid care to people 50 and older in 2020, according to a widely cited report.

“We know from our research that nearly 6 in 10 caregivers assist with medical and nursing tasks such as injections, tube feedings and catheter changes,” said Jason Resendez, president and CEO of the National Caregiving Alliance. But fewer than 30 percent of caregivers talk to health professionals about how to help their loved ones, he said.

Even fewer caregivers — just 7 percent — report receiving training related to the tasks they perform, according to a June 2019 report in JAMA Internal Medicine.

Nancy Limond, AARP’s chief advocacy and engagement officer, experienced this gap firsthand when she spent six years at home caring for her husband, who had amyotrophic lateral sclerosis, a neurological condition also known as Lou Gehrig’s disease. Although she hired health aides, they weren’t certified to operate the feeding tube her husband needed at the end of his life, and they couldn’t show LeaMond how to use it. Instead, she and her sons turned to the Internet and taught themselves by watching videos.

“Until recently, very little attention has been paid to the role of carers and the need to support carers so that they can be an effective part of the healthcare delivery system,” she told me.

Several details of the CMS proposal have not yet been finalized. In particular, CMS requested public comments on who should be considered a family caregiver for training purposes and how often training should be conducted.

(If you’d like to let CMS know what you think of its caregiver training proposal, you can comment on the CMS site until 5 p.m. ET on September 11. Medicare is expected to begin paying for caregiver training next year, and caregivers they should start asking for it then.)

Advocates said they favor a broad definition of caregiver. Because there are often multiple people performing these tasks, training should be available to more than one person, Resendez suggested. And because people sometimes get reimbursed by family members for their help, not being paid shouldn’t be a requirement, suggested Ann Tumlinson, founder and CEO of ATI Advisory, an aging and disability policy consulting firm.

As for the frequency of training, a one-size-fits-all approach isn’t appropriate given the diverse needs of older adults and the diverse skills of the people who help them, said 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 rehabilitation center. Others may need ongoing training as conditions such as heart failure or dementia progress and new complications arise, said Kim Carr, who manages payment policy for AOTA.

Whenever possible, training should take place in a person’s home rather than a health care facility, suggested Donna Benton, director of the Caregiver Support Center at the University of Southern California and the Los Angeles Caregiver Resource Center. Too often, the recommendations caregivers receive from health professionals are not easy to implement at home and need to be adjusted, she noted.

Nancy Gross, 72, of Mendham, N.J., experienced this when her husband, Jim Cocho, 77, received a stem cell transplant for leukemia in May 2015. After Cocho came home, Gross was responsible for washing the port, that was implanted in his chest, administering drugs through that site and making sure all the equipment he uses is sterile.

Although a visiting nurse came forward and offered training, it was not adequate for the challenges Gross faced. “I don’t tend to cry, but when you think your loved one’s life is in your hands and you don’t know what to do, it’s incredibly stressful,” she told me.

For her part, Cheryl Brown, 79, of San Bernardino, Calif. — 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 diagnosis, doctors gave Hardy a maximum of five years to live. But he didn’t buy into that prediction and ended up defying expectations.

Today, Hardy’s mind is completely intact and he can move his arms, but not the rest of his body. Caring for him is a full-time job for Sherrill, who is also chair of the executive committee of the California Commission on Aging and a former member of the California State Assembly. She said hiring paid help was not an option, given the cost.

And that’s what annoys Cheryl about the Medicare tuition 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 for a very long time is going to benefit from it. We caregivers do all the work and the professionals get the money? That doesn’t make sense to me.”

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