There is broad consensus that it is important to help older adults and people with disabilities remain independent for as long as possible. But are we ready to do what it takes as a nation to make this possible?
That is the challenge presented by President Joe Biden in his bold proposal to spend $ 400 billion on home and community services over eight years – a significant part of his $ 2 trillion infrastructure plan.
According to Ai-jen Poo, director of Caring Across Generations, a national group that advocates for older adults, people with disabilities, families and family members, this is a “historic and profound” opportunity to provide a stronger framework of services for those in need create caregivers who require significant support.
It is because the coronavirus pandemic has wreaked havoc in nursing homes, assisted living facilities and group homes, killing more than 174,000 people, it is estimated, and raising awareness of the need for long-term care options.
“There is now a much better understanding that it is not good to be stuck in long-term care facilities” and that outpatient care is an “essential alternative that the vast majority of people would prefer,” says Ari Ne ’eman, doctoral student in health policy at Harvard University, and Senior Research Associate on the Disability Project at Harvard Law School.
“The systems we have are crumbling” due to underfunding and staffing, and “there has never been a greater chance for change than now,” said Katie Smith Sloan, President of LeadingAge, at a recent press conference to discuss the president’s proposal has been . LeadingAge is a national association of more than 5,000 non-profit nursing homes, assisted living centers, senior citizens’ communities and home care providers.
However, the prospects for the president’s proposal are uncertain. Republicans disapprove of their costs, arguing that much of what the proposed American employment plan includes, including an emphasis on home care, does not count as real infrastructure.
“Although that [proposal] is a necessary step in strengthening our long-term care system, politically it will be a challenge, “suggests Joseph Gaugler, professor at the University of Minnesota School of Public Health who studies long-term care.
Even proponents of Biden’s proposal acknowledge that it does not cover the full level of care required by the country’s rapidly growing elderly population. Middle-income seniors, in particular, do not qualify directly for programs to be expanded. However, they would benefit from a larger, better paid, and better educated workforce of volunteers helping the people in their homes – one of the goals of the plan.
“This [plan] is not all that is needed, not in some form, “says Poo.” What we really want to achieve is universal access to long-term care. But it will be a multi-step process. “
It is important to understand what this is about when churches across the country and in Congress begin to discuss Biden’s proposal.
The services in question
Home and community-based services help people in need of significant support live at home, as opposed to nursing homes or group homes.
Services may include home visits from nurses or occupational therapists; Assistance with personal hygiene such as eating or bathing; Help from case managers; Participation in day care centers for adults; Help with cooking, cleaning and other chores; Transport; and home repairs and modifications. It can also help paying for long-lasting medical equipment like wheelchairs or oxygen tanks.
Statistics suggest that 70% of older adults in the US will need help with dressing, hygiene, moving around, financial management, medication, cooking, household chores, and other daily needs, usually at some point in their life for two to four years. As the country’s aging population grows to 74 million in 2030 (the year the youngest baby boomers turn 65), that need will grow exponentially.
Younger adults and children with conditions such as cerebral palsy, blindness, or intellectual disability may also need significant assistance.
The burden on families
Currently, 53 million family members provide most of the care that vulnerable seniors and people with disabilities need – without pay and often with significant financial and emotional costs. According to the AARP, family carers devote an average of around 24 hours a week to helping relatives and spending around $ 7,000 out of pocket on this care.
This reflects a sobering reality: for most individuals and families, paying for long-term care services is even more expensive than providing the care itself. According to a survey by financial services firm Genworth last year, the hourly cost of a home health aide averages $ 24. Assisted residential centers average $ 51,600 annually, while a semi-private room in a nursing home costs $ 93,075.
Many people expect Medicare – the nationwide health program for 61 million older adults and people with severe disabilities – to provide long-term care, including home services. Medicare coverage, however, is extremely limited.
Medicare only covers home health services for older adults and people with severe disabilities who live in their home country and require qualified services from nurses and therapists. It doesn’t pay for 24 hour care or the care of personal helpers or housewives. In 2018, around 3.4 million Medicare members received home health services.
In nursing homes, Medicare only pays for rehabilitation services for a maximum of 100 days. It does not provide support for long-term stays in nursing homes or assisted living facilities.
Medicaid – the state’s health program for 72 million children and adults in low-income households – may be an alternative, but financial eligibility standards are strict and only those with low incomes and wealth are qualified.
Medicaid supports two types of long-term care: home and community services, and those offered in settings such as nursing homes. But only care in institutions is prescribed by the federal government. Home and community-based services are provided at the discretion of the states.
While all states offer some form of service to households and communities, there are huge variations in the types of services that are offered (states can set limits on enrollment) and government spending. In general, people must be frail enough to need nursing home care in order to qualify.
Nationwide, 57% of Medicaid’s long-term care budget goes to home and community services – $ 92 billion in the 2018 federal budget year. But half of the states still spend twice as much on institutional care as they do on community-based care. And 41 states have home and community health service waiting lists totaling nearly 820,000 people and an average waiting time of 39 months.
According to the best information available, between 4 and 5 million people receive Medicaid-funded home and community services – a fraction of those who need care.
Problems with the workforce
Biden’s proposal does not specify how the $ 400 billion additional funding will be spent, other than stating that access to home and community care will be expanded and caregivers “an overdue pay raise, greater benefits and opportunity get to organize or get “join a union.” “
Caregivers, including nursing and home health and personal care workers, earn an average of $ 12 an hour. Most are women of color; About a third of those who work for agencies do not get health insurance from their employers.
An additional million workers will be needed for home care by the end of this decade – a number of experts believe that, given poor wages and working conditions, it will be difficult, if not impossible, to achieve them.
“We have a choice between keeping these poverty-wage jobs or turning them into good jobs that allow people to be proud of their jobs while taking care of their families,” says Poo of Caring Across Generations.
Biden’s plan leaves out many details. For example: what part of the budget should be used to strengthen the workforce? What part should be devoted to eliminating waiting lists? What amount should be spent on expanding the services?
How are inequalities in the current system – for example the lack of accessible services in rural areas or for people with dementia – addressed?
“We want funding for states linked to eliminating these inequalities,” said Amber Christ, health team leader for Justice in Aging, an advocacy group.
Meanwhile, proponents of the plan suggest that this could just be the opening of a major effort to shore up other parts of the safety net. “There are major loopholes in the middle-income family system that need to be addressed,” noted David Certner, AARP legal advisor.
Reforms to consider include caregiver tax credits, expanding the Medicare home health benefit, and removing the requirement that people receiving Medicare home health assistance must be homebound, says Christ of Justice in Aging.
“We should look more deeply into possible solutions that reach people who have some resources but not enough to pay for them [long-term] Services too, “says Christ.
Kaiser Health News is a non-profit, editorially independent program of the Kaiser Family Foundation and is not affiliated with Kaiser Permanente.
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