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?
This is the challenge presented by President Joe Biden with his bold proposal to spend $ 400 billion on home and community services over eight years, an integral part of his $ 2 trillion infrastructure plan.
This is a “historic and profound” opportunity to create a stronger framework of services for vulnerable people in need of significant assistance, said Ai-jen Poo, director of Caring Across Generations, a national group that advocates for older adults, people with Disabilities, families and families use carers.
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It is because the coronavirus pandemic has wreaked havoc in nursing homes, assisted living facilities, and group homes, killing more than 174,000 people, 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,” Ari Ne said. eman, Senior Research Fellow on the Disability Project at Harvard Law School.
“The systems we have are crumbling” due to underfunding and understaffing, and “there has never been a greater chance for change than now,” said Katie Smith Sloan, President of LeadingAge, at a recent press conference on the president’s proposal was discussed. 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.
“While this (proposal) is a necessary step in strengthening our long-term care system, it will be a political challenge,” suggested Joseph Gaugler, a professor in the University of Minnesota’s School of Public Health who studies long-term care.
Even proponents acknowledge that the proposal does not cover the full level of care that the country’s rapidly growing elderly population needs. 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 by a step of the imagination,” said 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.
The need. At some point 70% of older adults will need help with dressing, hygiene, moving around, financial management, medication, cooking, housekeeping, and other daily needs, usually for two to four years. As the country’s aging population grows to 74 million in 2030 (the year all baby boomers get older), 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 24 hours a week to helping relatives and spending around $ 7,000 out of pocket.
This reflects a sobering reality: long-term care services are simply too expensive for most individuals and families. According to a survey by Genworth, a financial services company, last year, the hourly cost of a home helper averages $ 24. Assisted residential centers average $ 51,600 annually, while a semi-private room in a nursing home costs $ 93,075.
Medicare restrictions. 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.
In the community, Medicare only covers home health for older adults and those with severe disabilities who are homebound and require skilled services from nurses and therapists. It doesn’t pay for 24-hour care or housewives, or routinely cover the care provided by personal aides. 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 options. 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 waiting lists with a total of almost 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 to spend $ 400 billion in additional funding other than expanding access to home and community care and providing caregivers with “a long overdue raise, benefits, and the ability to organize or get to 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.
Home care will require an additional 1 million workers 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,” said Poo of Caring Across Generations.
Next Steps. 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 eradicating 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,” said 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 be homebound, Christ of Justice said in aging.
“We should look more deeply into possible solutions that reach people who have some resources but not enough to pay for those services,” she said.
KHN (Kaiser Health News) is a national newsroom that produces extensive journalism on health issues. Alongside Policy Analysis and Polling, KHN is one of the three most important operational programs of the KFF (Kaiser Family Foundation). KFF is a foundation that provides health information to the nation.