There鈥檚 widespread agreement that it鈥檚 important to help older adults and people with disabilities remain independent as long as possible. But are we prepared to do what鈥檚 necessary, as a nation, to make this possible?
That鈥檚 the challenge President Joe Biden has put forward with his bold proposal to spend $400 billion over eight years on home and community-based services, a major part of his $2 trillion infrastructure plan.
It鈥檚 a 鈥渉istoric and profound鈥 opportunity to build a stronger framework of services surrounding vulnerable people who need considerable ongoing assistance, said Ai-jen Poo, director of Caring Across Generations, a national group advocating for older adults, individuals with disabilities, families and caregivers.
It comes as the coronavirus pandemic has wreaked havoc in nursing homes, assisted living facilities and group homes, killing more than 174,000 people and triggering awareness of the need for more long-term care options.
鈥淭here鈥檚 a much greater understanding now that it is not a good thing to be stuck in long-term care institutions鈥 and that community-based care is an 鈥渆ssential alternative, which the vast majority of people would prefer,鈥 said Ari Ne鈥檈man, senior research associate at Harvard Law School鈥檚 Project on Disability.
鈥淭he systems we do have are crumbling鈥 due to underfunding and understaffing, and 鈥渢here has never been a greater opportunity for change than now,鈥 said Katie Smith Sloan, president of LeadingAge, at a recent press conference where the president鈥檚 proposal was discussed. LeadingAge is a national association of more than 5,000 nonprofit nursing homes, assisted living centers, senior living communities and home care providers.
But prospects for the president鈥檚 proposal are uncertain. Republicans and argue that much of what the proposed American Jobs Plan contains, including the emphasis on home-based care, .
鈥淭hough this [proposal] is a necessary step to strengthen our long-term care system, politically it will be a challenge,鈥 suggested Joseph Gaugler, a professor at the University of Minnesota鈥檚 School of Public Health, who studies long-term care.
Even advocates acknowledge the proposal doesn鈥檛 address the full extent of care needed by the nation鈥檚 rapidly growing older population. In particular, middle-income seniors won鈥檛 qualify directly for programs that would be expanded. They would, however, benefit from a larger, better paid, better trained workforce of aides that help people in their homes 鈥 one of the plan鈥檚 objectives.
鈥淭his [plan] isn鈥檛 everything that鈥檚 needed, not by any step of the imagination,鈥 Poo said. 鈥淲hat we really want to get to is universal access to long-term care. But that will be a multistep process.鈥
Understanding what鈥檚 at stake is essential as communities across the country and Congress begin discussing Biden鈥檚 proposal.
The services in question. Home and community-based services help people who need significant assistance live at home as opposed to nursing homes or group homes.
Services can include home visits from nurses or occupational therapists; assistance with personal care such as eating or bathing; help from case managers; attendance at adult day centers; help with cooking, cleaning and other chores; transportation; and home repairs and modifications. It can also help pay for durable medical equipment such as wheelchairs or oxygen tanks.
The need. At some point, 70% of older adults will require help with dressing, hygiene, moving around, managing finances, taking medications, cooking, housekeeping and other , usually for two to four years. As the nation鈥檚 aging population expands to 74 million in 2030 (the year all baby boomers will have entered older age), that need will expand exponentially.
Younger adults and children with conditions such as cerebral palsy, blindness or intellectual disabilities can similarly require significant assistance.
The burden on families. Currently, 53 million family members provide most of the care that vulnerable seniors and people with disabilities require 鈥 without being paid and often at significant financial and emotional cost. According to AARP, family caregivers on average devote about 24 hours a week, to helping loved ones and spend 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 last year by Genworth, a financial services firm, the hourly cost for a home health aide averages $24. Annually, assisted living centers charge an average $51,600, while a semiprivate room in a nursing home goes for $93,075.
Medicare limitations. Many people assume that Medicare 鈥 the nation鈥檚 health program for 61 million older adults and people with severe disabilities 鈥 will pay for long-term care, including home-based services. But Medicare coverage is extremely limited.
In the community, Medicare covers home health only for older adults and people with severe disabilities who are homebound and need skilled services from nurses and therapists. It does not pay for 24-hour care or homemakers or routinely cover care from personal aides. In 2018, about 3.4 million Medicare members received home health services.
In nursing homes, Medicare pays only 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 鈥 the federal-state health program for 72 million children and adults in low-income households 鈥 can be an alternative, but financial eligibility standards are strict and only people with meager incomes and assets qualify.
Medicaid supports two types of long-term care: home and community-based services and those provided in institutions such as nursing homes. But only care in institutions is mandated by the federal government. Home and community-based services are provided at the discretion of the states.
Although all states offer home and community-based services of some kind, there鈥檚 enormous variation in the types of services offered, who is served (states can set caps on enrollment) and state spending. Generally, people need to be frail enough to need nursing home care to qualify.
Nationally, 57% of Medicaid鈥檚 long-term care budget goes to home and community-based services 鈥 $92 billion in the 2018 federal budget year. But half of states still spend twice as much on institutional care as they do on community-based care. And 41 states have waiting lists, totaling nearly 820,000 people, with an average wait of 39 months.
Based on the best information available, between 4 million and 5 million people receive Medicaid-funded home and community-based services 鈥 a fraction of those who need care.
Workforce issues. Biden鈥檚 proposal doesn鈥檛 specify how $400 billion in additional funding would be spent, beyond stating that access to home and community-based care would be expanded and caregivers would receive 鈥渁 long-overdue raise, stronger benefits, and an opportunity to organize or join a union.鈥
Caregivers, including nursing assistants and home health and personal care aides, earn $12 an hour, on average. Most are women of color; about one-third of those working for agencies don鈥檛 receive health insurance from their employers.
By the end of this decade, an extra 1 million workers will be needed for home-based care 鈥 a number of experts believe will be difficult, if not impossible, to reach given poor pay and working conditions.
鈥淲e have a choice to keep these poverty-wage jobs or make them good jobs that allow people to take pride in their work while taking care of their families,鈥 said Poo of Caring Across Generations.
Next steps. Biden鈥檚 plan leaves out many details. For example: What portion of funding should go to strengthening the workforce? What portion should be devoted to eliminating waiting lists? What amount should be spent on expanding services?
How will inequities of the current system 鈥 for instance, the lack of accessible services in rural counties or for people with dementia 鈥 be addressed? 鈥淲e want to see funding to states tied to addressing those inequities,鈥 said Amber Christ, directing attorney of the health team at Justice in Aging, an advocacy organization.
Meanwhile, supporters of the plan suggest it could be just the opening of a major effort to shore up other parts of the safety net. 鈥淭here are huge gaps in the system for middle-income families that need to be addressed,鈥 said David Certner, AARP鈥檚 legislative counsel.
Reforms that should be considered include tax credits for caregivers, expanding Medicare鈥檚 home health benefit and removing the requirement that people receiving Medicare home health be homebound, said Christ of Justice in Aging.
鈥漌e should be looking more broadly at potential solutions that reach people who have some resources but not enough to pay for these services as well,鈥 she said.
