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Spinal surgery four years ago left Alene Shaheed in a wheelchair and she depended on short daily visits from home health aides to help her get around.
But this year, during the protracted coronavirus pandemic, its support system has collapsed and its routine care has become unpredictable. Four agencies serving his hometown of Jacksonville, Fla., were unable to provide regular assistance due to a severe shortage of low-wage workers.
“If no one comes for three days, I don’t take a bath for three days,” said the 76-year-old actress. “I don’t have anyone to cook, so I eat ramen noodles until someone comes.”
Nearly 800,000 people are on waiting lists for subsidized home care. For millions of Americans, it has never been more urgent to find reliable and affordable help to stay at home rather than move to a nursing home where Covid-19 has killed tens of thousands of people.
Expanding home and community-based services is part of the legislative package proposed by President Biden and the Democrats. At this stage of deliberations in Congress, the amount of such programs covered by Medicaid has been reduced from $400 billion to $150 billion over eight years, in part to boost the historically low wages of home care workers.
“We will expand services for seniors so we can enlist the help of well-trained, well-paid professionals to help families care for their parents at home – cooking for them, getting their food, help them get around, live in their own homes with the dignity they deserve,” President Biden said on Thursday. ” said.
Will the amount in the current plan be sufficient? Supporters say the new healthcare money will displace Medicaid’s decades-old bias from nursing home care. Many experts are skeptical of promises that this round of funding could fix a broken system like home care, especially as the boomer generation’s looming retirement requires more help to stay independent and strain health care financing.
“You have to be very realistic about the amount of need you have in the system right now,” said David Grabowski, professor of health care policy at Harvard Medical School. $150 billion represents a significant flow of funds, but there are limits, he said: “Once you start calculating, the dollar doesn’t go as far as you would like.”
States are required to use Medicaid funds to cover hospice care, but states have significant freedom under federal regulations to decide how much should be allocated to provide home and community-based services.
People who need help with tasks such as feeding, dressing or taking medication often have to qualify for a Medicaid exemption to receive home care services. Medicaid, a federal government program that is the primary source of coverage for long-term care, spends approximately $114 billion annually on these home and community-based services, representing more than half of total spending on long-term care. Nearly 2.5 million people received exemptions in 2018, according to the most recent data available in a report. report By the Kaiser Family Foundation.
Medicare, the federal insurance program for older and disabled adults, does not cover long-term care and limits the type of home care people can receive.
It is well known that the demand for home care for those who want to live independently is much greater than the supply. Some people may have private insurance or pay for the care themselves.
Under Medicaid, waiting lists for elderly and disabled Americans seeking home care continue to grow because states are enrolling. According to a Kaiser analysis, most people on the lists live in states that have not expanded Medicaid.
Benefits of home care it also varies greatly from state to state. For example, someone in Pennsylvania is eligible for about $50,000 per year for home or community services under Medicaid, while someone in Iowa can only receive $21,000.
Amber Christ, an attorney for Justice in Aging, a nonprofit group, said the lack of funds “really forces older adults to enter institutions.” He said the new congressional package means “we have the opportunity to turn the script.”
He and other advocates plan to push for additional money. “We will continue to work to increase funding because more is needed to ensure that all aging adults and people with disabilities have the option to receive the care they need at home,” he said in an email.
Increasing wages for home health workers was a controversial provision for Republicans, who saw it as a gift to unions and would limit states’ flexibility in spending new funds.
Without detailed legislative language, calculating how the $150 billion proposed in the Democrats’ proposal will be spent is still a matter of guesswork.
Jonathan Gruber, a health economist at MIT, said the low figure would provide home services to perhaps a million more people and create about 400,000 new jobs. This may include jobs for caregivers, such as family members who are unpaid but unable to go to work.
But if the amount is cut further – and negotiations supporters warn states may be less willing to expand 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 provide at least $150 billion so that “states will see the value and value of getting it,” he said.
Even this level of funding may not eliminate waiting lists, but it “will help drive people away,” he said.
Ms. Jorwic said that under the American Recovery Plan Act passed by Congress this year, all states are using the provisional funds allocated to support home and community-based services.
Still, in a pandemic economy where people are avoiding lower-tier jobs, the issue of wages is troubling for the home healthcare industry, which has long paid its workers far less than others in service industries. Some businesses now pay $15 or more per hour, attracting low-paying jobs and leaving the vulnerable without reliable assistance.
About 70 percent of long-term care workers earn less $30,000 a year, According to the Kaiser, they are more likely to live in poverty. “It is the same person who has aged in poverty and will be pushed into a nursing home,” said Ms Christ of Aging, Minister of Justice.
While details are scarce, the proposed law will require states to prove that funds are directed towards higher fees. “This will be the first major federal investment to raise wages,” Ms Jorwic said.
Higher wages are crucial to finding more help for the likes of Ms. Shaheed in Florida. “They can no longer find anyone willing to come for the low wages they pay,” he said. For $10 an hour, no one will come and help me.
For those who have to wait to qualify for financial assistance for home care, the difference is stark.
People like Stephen Grammer with cerebral palsy have been warned from childhood that they will face institutionalization if home care is not routinely provided.
In his 20s, Mr. Grammer spent nearly ten years in a nursing home after his mother fell ill. While living with older adults with Alzheimer’s, she was disturbed by the restrictions imposed on her. If he left the building, he had to be back by midnight, otherwise this would count as 18 nights per year allowed to be outside.
“I would press the call button when I needed to go to the bathroom and many times workers would come and turn off my call light and walk away even if I had to go to the bathroom,” he said via email.
Grammer, who uses an electric wheelchair and nowadays advocates for people with disabilities, eventually earned Medicaid exemption and another state program that provides housing. Now 41, she lives alone in Roanoke, Va., and someone comes in from 6 am to 2 pm and 4 pm to midnight in 16 hours a day.
“I have the freedom to come and go as I please,” said Mr Grammer.
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