29 September (WNN) — Stuck in Congress’s biggest spending package in a generation is an infusion of cash for home health services, which advocates say is chronically low, despite growing need.
The multitrillion-dollar package that is being debated in Congress includes $190 billion to provide care for seniors and people with disabilities away from hospitals and to move long-term care facilities into home and community settings.
The social spending bill is at the heart of President Joe Biden’s promise to invest in “human capital” along with roads, bridges and other traditional infrastructure. The funding will lead to low wages and under-training for home health workers, whose demand is growing rapidly.
“The pandemic has exposed cracks in the system when it comes to supporting people in the long term,” said Nicole Jorvik, senior director of public policy for the national disability advocacy group The Ark. “We put a lot of reliance on nursing homes. It will go a long way in building the capacity we need into the system.”
The bill would help complete decades of underfunding for Medicaid. It would also address Medicaid’s “institutional bias,” which requires nursing homes to be covered but not home care, she said.
The provision has drawn criticism in Congress, mainly from Republicans who say it centralizes too much control of Medicaid in the federal government while giving states less flexibility.
“We’re doing a seismic overhaul of Medicaid that will scale up the program,” U.S. Rep. Buddy Carter, R-Ga., said during a committee hearing earlier this month.
During the hearing, Republicans said that only states that can meet the additional requirements can access the money, which makes benefits disproportionate. US Representative Kurt Schrader, D-Ore. also criticized it for having little-changing assisted-living facilities.
But Jorvik said home-based services are less expensive and demand is high. About 820,000 people are on waiting lists nationally for home and community-based services funded by Medicaid. One study found that home-based services cost half of nursing homes, which charge $90,000 to $100,000 per year.
By 2030, every member of the Baby Boomer generation will be 65 years old, and about 70% will need some sort of long-term care or service.
Despite demand, home healthcare workers are poorly paid, with a median annual income of only $13,000, according to the Service Employees International Union, which represents many of these workers. According to the union, the home healthcare workforce is also heavily female at 89%. About half of the workers live in households that receive public assistance.
“This was a workforce that was in crisis before the pandemic,” Jorvik said. This has worsened with the country’s tight labor market.
These dynamics create a more difficult situation for people like Denny Slater.
struggle for care
Slater, a retired police officer, became a full-time caregiver to his wife, Patty, in 2015 after she was diagnosed with Alzheimer’s disease in her early 60s.
He recalled how his wife began to forget where he was while working in a seasonal job preparing tax returns. He would leave her reminder notes, but she began to pay attention to them. He had to leave his office in the midst of customers to see him. After her wanderlust she received a call from the Scottsdale, Ariz., police. Eventually, he became her full-time caregiver, and the couple moved to Salem, Ore.
The couple’s daughter, Kelly Kalkofen, recalled how her mother’s entire personality changed and how she became agitated at not being able to feed herself or tie her shoes. Her mother refused to take the medicine, and her father had to put the most important things into her butterscotch pudding, she said.
Her mother would get up suddenly and needed someone to watch over her constantly, but sometimes her husband would leave to use the bathroom.
“I didn’t know how to handle it,” said Slater, 75.
He recalled that being unable to direct his wife followed him during his wandering episodes, which he said lasted about 40 minutes. Sometimes he had to take her away from highways or other dangerous areas.
He tried hiring domestic helpers, but they weren’t of much help. He said he was poorly trained to care for someone with Alzheimer’s and was scared when his wife became agitated.
“One time I looked in the mirror, and I didn’t recognize myself,” said Slater. He had not shaved, bathed or even combed his hair as all his attention was focused on taking care of his wife, who died in 2020.
The first iteration of the bill included $400 billion for home and community-based care services. But earlier this month, the House Committee on Energy and Commerce approved a piece of legislation that cut funding for the service to $190 billion.
Jorvik said it should be at least $250 billion. States will need to meet additional requirements to access the funds. Less money means fewer states will find it worth signing or they won’t be able to access the money, she said.
He said the amount of the bill is not enough to build capacity in rural areas or to improve wages and training for workers, making the system strained. But Jorvik is optimistic that the money will be added through the legislative process.
Rachel Conant, vice president of federal affairs for the Alzheimer’s Association and the Alzheimer’s Impact Movement, said in a statement that the funding will benefit the 6 million Americans living with Alzheimer’s disease and their 11 million caregivers.
She said she’s also encouraged by bipartisan support to expand “Money Follows the Person,” a federal program that has helped more than 101,000 seniors and people with disabilities move from nursing homes to community settings.