Biden promised to fix home care for the elderly. Much more help may be needed.
After undergoing spinal surgery four years ago, Alene Shaheed was in a wheelchair and reliant on brief daily visits from family doctors to help her get around.
But their support system collapsed this year during the ongoing coronavirus pandemic, and their routine care became unpredictable. Four agencies serving their hometown of Jacksonville, Florida, did not provide regular support due to the severe shortage of low-wage workers.
“If no one comes for three days, I won’t bathe for three days,” said the 76-year-old. “I don’t have anyone to prepare meals, so I eat ramen noodles until someone comes.”
Around 800,000 people are on waiting lists to receive subsidized home care. For millions of Americans, finding reliable, affordable help to stay at home has never seemed more urgent – rather than moving to a nursing home where Covid-19 killed tens of thousands of people.
The expansion of home and community services is part of the legislative package proposed by President Biden and the Democrats. At this stage of the Congressional negotiations, Medicaid reduced the amount of such programs – in part to raise historically low home care workers’ wages – from $ 400 billion over eight years to $ 150 billion.
“We will expand services for seniors so that families can get help from well-trained, well-paid professionals to help them look after their parents at home – cook a meal for them, get their groceries for them, give them help them get around to help them live in their own homes with the dignity they deserve, ”President Biden said Thursday.
Will the amount in the current plan be enough? Proponents say the new money for health care would turn away Medicaid’s decade-long bias on residential care. Many experts doubt that this round of funding can fix a system as broken as home care, especially as the increasing retirement of the boomer generation requires more support to stay independent and weighs down on health care funding.
“You have to be very realistic about how much the system is in demand,” says David Grabowski, Professor of Health Policy at Harvard Medical School. While the $ 150 billion is a significant inflow of funds, there are limits, he said: “Once you start math, the dollars don’t go as far as you’d like.”
States must use Medicaid funds to cover home care, but federal regulations give states significant leeway to decide how much to devote to providing home and community services.
People who need help with tasks like eating, dressing, or taking medication often need to qualify for a Medicaid exemption to receive home care. Medicaid, a state program that is the primary source of coverage for long-term care, spends approximately $ 114 billion annually on these home and community services, well over half of total long-term care spending. About 2.5 million people were granted an exemption in 2018, according to the latest in a. available data report from the Kaiser Family Foundation.
Medicare, the government insurance program for elderly and disabled adults, does not cover long-term care and restricts the type of home care.
It is known that the demand far exceeds the supply of home care for those who wish to live independently. Some people are privately insured or pay for care themselves.
Under Medicaid, waiting lists for elderly and disabled Americans seeking home care continue to grow as states limit enrollment. Most of the people on the lists live in states that haven’t expanded Medicaid, according to Kaiser analysis.
Home care benefits also vary greatly from state to state. For example, someone in Pennsylvania is entitled to about $ 50,000 per year under Medicaid for domestic or community services, while someone in Iowa may be only entitled to $ 21,000.
The lack of funding “really forces older adults into institutions,” said Amber Christ, an attorney with Justice in Aging, a nonprofit group. The new congressional package, she said, means that “we have the opportunity to turn the script around”.
You and other proponents plan to push for extra money. “We will continue to work to increase funding because more is needed to ensure that all older adults and people with disabilities have the opportunity to receive the care they need at home,” she said in an email Mail.
Raising home nursing wages is a controversial provision for Republicans who would view it as a giveaway to the unions and limit states’ flexibility in spending new funds.
Without detailed legislation, calculating how to spend the $ 150 billion proposed in the Democratic proposal is still a mystery.
Jonathan Gruber, a health economist at MIT, said the lower number would serve perhaps a million more people at home and create about 400,000 new jobs. This could include janitorial jobs, such as family members, who are unpaid but unable to go to work.
But if the amount continues to be cut – and negotiations on the law are far from complete – supporters warn that states may be less willing to expand their services.
“We need a big investment,” said Nicole T. Jorwic, senior director of public policy at The Arc, an advocacy group for people with physical and developmental disabilities. The bill must set aside at least $ 150 billion for “states to see the value and worth of the drawdown,” she said.
Even that level of funding might not remove the waiting lists, but “it will help make people take off,” she said.
As part of the US bailout bill passed by Congress earlier this year, all states used temporary funds allocated to support home and community-based services, Ms. Jorwic said.
Still, the question of wages in a pandemic economy with people avoiding lower jobs is a bad sign for the home health industry, whose workers have long been paid far less than others in the service industry. Some companies are now paying $ 15 an hour or more an hour, luring away those with underpaid jobs, and leaving the weak with no reliable help.
About 70 percent of nurses earn less than $ 30,000 per year according to Kaiser, and they tend to live in poverty. “It is the same person who ages in poverty and is put in a nursing home,” said Ms. Christ of Justice in Aging.
While the details are sparse, the proposed law would require states to demonstrate that the funds were used towards higher wages. “This would be the first time there has been a major government investment to raise wages,” said Ms. Jorwic.
Higher wages are critical to finding more helpers for people like Ms. Shaheed in Florida. “You can no longer find anyone willing to come in for the low wages they pay,” she said. “Nobody will come and help me for $ 10 an hour.”
For those who have had to wait for home care financial help, the difference is palpable.
People like Stephen Grammer, who suffers from cerebral palsy, have been warned since childhood that if home care could not be provided routinely, they would need to be placed in homes.
In his 20s, Mr. Grammer spent nearly a decade in a nursing home after his mother fell ill. He resented the restrictions placed on him living with older adults with Alzheimer’s disease. If he left the premises, he had to be back by midnight or it would count towards the 18 nights a year he was allowed to be outside.
“When I had to go to the bathroom, I would press the call button and many times the workers would come and turn off my call light and leave even though I had to go to the bathroom,” he said via email.
Mr. Grammer, who now uses a power wheelchair and campaigns for people with disabilities, eventually qualified for a Medicaid exemption and another government program that provides housing. Now at 41, he lives alone in Roanoke, Virginia, with someone coming 16 hours a day, 6 a.m. to 2 p.m. and 4 p.m. to midnight.
“I have the freedom to come and go as I want,” said Grammer.