Caregivers Struggling

Keeping Alyssa Villers safe and healthy is a full-time job. After graduating from Emory University and working for the CDC, Alyssa was diagnosed with dementia at 31. Her condition progressed rapidly and now, at 36, she is non-verbal and requires around-the-clock monitoring. At the same time, she’s still young and active, so her mother is determined to keep her out of a nursing home for as long as possible.

“I’m going to do everything I can to keep her with me,” said Jamie Villers of Concord. “She has a type of dementia that doesn’t lend well to living in a community.”

But Villers, 56, is also working full-time as a nurse supervisor with Dartmouth-Hitchcock in Concord. And to keep Alyssa at home, she relies on a home aide while she works. It took Villers 18 months to find an agency that had home caregivers, and the turnover was nearly constant: she went through nine caregivers in 18 months. 

Luckily, she eventually found Melissa Longval of Concord, who has been with the family for nine months. Four days a week, Longval watches Alyssa while Villers works. She prepares meals and monitors Alyssa’s compulsions around food; she helps her in the bathroom, and encourages her to stay active, knowing that soon dementia will take away Alyssa’s ability to move independently. One day, they spent hours just walking up and down the stairs. For that work, Longval is paid $12.75 an hour. 

New Hampshire, like the rest of the nation, is facing a home care crisis. Most adults want to age at home. While demand for home health and personal care aids is expected to surpass demand (more than any other occupation between 2020 and 2030), low wages, irregular hours and lack of benefits are all contributing to home health workers leaving their jobs. About 20% of home health workers have quit just since the pandemic. 

“With such low pay, you get overworked,” said Longval. “You just want to give up and throw in the towel and that’s what so many people do. Me, I don’t like to give up.”

Low reimbursements, low pay and high need

Home health care encompasses a wide range of services, from skilled nursing to personal care assistants who, like Longval, have no specialized training. Overall, home health care is less expensive and more convenient than care delivered in a nursing home or hospital. And yet, “it’s been perennially underfunded,” said Gina M. Balkus, CEO of the Home Care, Hospice and Palliative Care Alliance of NH. 

A major issue is the low pay. Nationally, the average salary for a home care worker in 2020 was $13.49. That’s lower than many fast food workers or retail employees are paid, said Sherry Pratt of Belmont. Pratt is approved for 10 hours of state-funded home care each week for her severely autistic 18-year-old daughter, but she has been unable to find anyone willing to take such a low-paying part-time job. 

“The main issue is finding anybody who is willing to work 10 hours a week at $15 an hour with a [woman] who needs her bum wiped or might be aggressive,” said Pratt. “That isn’t enough.”

Wages for home care have not kept up with the rise in wages for other low-skilled jobs, said Henry Lipman, the NH Medicaid director. “I do worry about the collapse of staffing in the home environment,” he adds. 

It’s impossible to address low wages without discussing the way that agencies are paid by insurance providers for the services they provide, said Julie Reynolds, president and CEO of Cornerstone VNA, a home care agency in Rochester. “Their reimbursement doesn’t cover the cost of us raising wages,” she adds. 

In NH, home care is run under a variety of different programs. Funding for home care can come from three sources: federal Medicare, state-run Medicaid, or commercial insurers. Occasionally, people pay out-of-pocket for care as well. Typically, commercial insurers pay the most for home care visits and Medicare pays enough to cover the cost of an efficient provider, as defined by Medicare. Medicaid programs typically do not cover the full cost, said Lipman. This leads to cost shifting — the idea that providers can balance out low Medicaid payments by taking on private paying clients, who are more lucrative.

But at agencies like Coverstone VNA, the vast majority of clients are on Medicaid programs. A home health aide patient visit costs an agency about $60, factoring in travel, supervision and other administrative costs, said Balkus. Medicaid programs reimburse at a much lower rate. For example, the Medicaid-waiver Choices for Independence program reimburses that service at $34.68 for a visit lasting less than two hours.

“Therein lies the challenge,” said Balkus. 

Funding coming, but more help is needed

There is some home for better pay in home care. In both January 2020 and January 2021, all Medicaid programs received a 3.1% payment increase, the first in many years, said Lipman. In fiscal year 2022 the state raised rates for caregivers who provide services in the home again. The increase ranged between 5-15%, for different services. 

Balkus is appreciative of that increase, but says that it does little considering how far behind the state has fallen on fair pay. Her organization advocated for a 30% increase to reimbursements, despite knowing that “no one is going to get a 30% rate increase at the statehouse.”

“If they had just done a cost of living increase every year, we wouldn’t be in this boat, but they’ve neglected it for so long, it’s difficult for the state to catch up,” she said. 

Federal Build Back Better legislation — currentlylanguishing in the Senate — allocated $150 billion to reduce wait times for home care services and improve pay for home care workers. Although those funds now seem unlikely, the federal American Rescue Plan, passed last March, also allocated money for home and community-based services, by providing a one-time 10% increase to federal match funds that states receive for home care services. In NH, that will provide at least $73 million to agencies, 80% of which must be used to benefit home care workers, said Lipman. The Department of Health and Human services forecasts the program could provide up to $100 million. 

“That’s a good opportunity to make things better, but unless there’s a federal change it’s one-time money,” Lipman said. 

This year, the state also adjusted its policy for unspent funds allocated for home care. Unspent funds accrue when people, like Pratt’s daughter, are approved for services, but are unable to access them due to availability or other reasons. Rather than lapsing into the general fund, this money will be redistributed to care agencies at the end of the budget period. This approach is based on one already in place for money allocated to nursing homes. 

In addition, Lipman has begun holding listening sessions with Medicaid stakeholders, including patients, providers and family members. 

“There is a recognition that this needs attention and work,” said Lipman. “Agencies have staffing challenges, but families have living challenges if they don’t get the support they need. They’re inseparable in a way.”

Money alone isn’t enough

If pay for home care workers suddenly jumped, there would still be the underlying issue of staff shortages, said Balkus. "Even if the state did increase [reimbursement] rates, the question becomes who will do this work?”

Prior to the pandemic, there was awareness about a nursing shortage and that there teachers in nursing schools, in part because working as a nurse pays more than working as a professor, said Reynolds. In NH, more people are applying to nursing programs, but a lack of staff and clinical positions means that the number of people accepted into those programs remains unchanged. “We are not prepared,” Reynolds said. 

Families also express frustrations over policies about family members working as home care providers for their loved ones. After being unable to find a home care provider for her daughter, Pratt asked her agency whether she would take the role. She was told she was ineligible because she was the guardian. 

"Why do I have to pay a stranger to take care of my child?” Pratt said. 

Since she has been unable to find a care provider, she’s had to quit her job to look after her daughter. The $150 a week that the state has approved to spend on her daughter’s caregiver would make a difference for the family financially, Pratt said. 

"I’ve completely restructured my life,” she said. “If the money is just sitting there not being used, why can’t it be used for the family?”

Villers had the same question. At one point when she was unable to find consistent care, she was exploring giving up guardianship of Alyssa so that she could become a paid caregiver. One of Alyssa’s siblings would have become her legal guardian. 

"That’s something that needs to change in the state,” she said. “Who better to care for the child than the mom?”

In 2020, the state received a federal waiver to allow family members to be compensated for some direct care work, said Lipman. But the waiver, an 1135, will expire when the country is no longer in a public health emergency due to the pandemic. 

“We’re trying to get a different type of waiver that would provide the same benefits,” Lipman said. 

When the federal public health emergency ends, people are also at risk of losing their Medicaid coverage if they have not completed a redetermination, so Lipman urges all Medicaid patients to finish the paperwork soon. 

Lipman said the challenges around home care are not just as a medicaid issue, but a state-wide, even global, economic issue. Improving access to nursing education and affordable housing will all help ensure people are able to be cared for in their homes, rather than in institutions. 

"We really don’t have a choice,” he said. “We have to work through it.”

Although Villers’ experience is extreme, she said that the issues she’s facing are universal. 

“Everyone at some point is going to need a caregiver or be a caregiver,” she said. “Taking care of humans can be a dirty job sometimes. Not everybody is interested in doing that type of work. The people who do it are rare. They should be compensated as such.”

These articles are being shared by partners in The Granite State News Collaborative. For more information. visit collaborativenh.org.