It’s obvious if you work in the aging field. It’s obvious if you work in disability field. It’s obvious if you are any age and live with a disability. It’s obvious if you are a member of the growing direct care workforce. It’s obvious if you are a son or a daughter supporting an aging parent who needs help to remain at home. And now, finally, it’s obvious to the President of the United States.
After nearly 20 years working in the field of aging, fighting to secure access to needed health and long–term care services for older adults, what a relief and revelation it was to hear the President’s words in his recent address to the joint session of Congress. “Democrat or Republican voters, their great concern is taking care of an elderly loved one.” A simple and obvious statement that represents what could become the most profound and meaningful shift in aging policy in decades.
As the COVID crisis made obvious to us all, our current system for providing care to older adults is broken. Medicare and Medicaid are the primary forms of long-term care coverage for older adults. Yet, when these programs were established over fifty years ago, lawmakers decided to pay for institutional care and not for the supports and services aging adults and people with disabilities need to remain living at home and connected to their communities. As a result, our care infrastructure today has gaping holes and gaps forcing many aging adults into nursing homes or alternatively placing enormous strain on families to provide uncompensated care.
President Biden has responded with a proposal to invest $400 billion in Medicaid home and community-based services (HCBS) – an investment that would fortify the foundation of our care infrastructure so that more people with disabilities of all ages can live at home and be connected to their communities, their jobs, their schools, their families, their friends; and so that direct care workers can have good jobs with just compensation.
We at Justice in Aging also believe it’s obvious that investing in Medicaid HCBS should be the top priority of building a robust care infrastructure. Medicaid is the backbone of our long-term care system, covering 42% of all long-term care costs including the wide range of services and supports that older adults and people with disabilities of all ages need to remain living at home and connected to their communities. Yet, access to Medicaid HCBS is not universal and varies greatly depending on where you live, your race, your age, and your disability.
While progress has been made to expand access to HCBS over the years, half of states still spend twice as much on institutional care as they do on HCBS for older adults. If you live in Florida, for example, you’ll join the list of 50,000 other older adults waiting years to become eligible for HCBS. Iowa is spending nine times more on institutional care than on HCBS for older adults. Older adults of color are being admitted to nursing homes at higher rates in part, researchers suspect, due to the lack of HCBS options. And 75% of older adults at age 80 with dementia and Alzheimer’s are living in nursing homes compared to just 4% of the general population, while two-thirds of those who die of dementia are doing so in nursing homes. This could all change.
The Biden proposal would provide a 33% increase in HCBS spending annually. This is transformational! For comparison, in the period between 2011 and 2015 when complete expenditure data was last available, HCBS spending only increased on average 5% a year. So a 33% increase is a very big deal.
It is also, once again, obvious that in order to expand HCBS so more older adults can age at home, that we must make investments in the direct care workforce. These direct care workers, mostly women of color, who provide essential care and supports to older adults and people with disabilities and who have put their lives at risk during the pandemic are undervalued and underpaid, earning an average of $16,200 a year. The Biden proposal would provide funding to expand the direct care workforce to meet the growing demand for home and community-based services through higher wages and benefits and improved workforce training and supports.
The need for investment in our care infrastructure may be obvious, but making that investment is not inevitable. The President has demonstrated through his proposals that he gets it. Members of Congress like Senators Casey, Brown, and Hassan and Representative Dingell who championed HCBS legislation have demonstrated that they get it. And we know the millions of American families that are receiving care or providing care get it. But in order to realize the reforms we need, it’s going to take us all rallying together to build a more robust and equitable care infrastructure that makes it possible for older adults and people with disabilities of all ages to get the care they need in their own homes and communities. Doing so will result in big dividends for families, workers, and society.
Show your support for Medicaid HCBS by joining this organizational sign-on letter to Congress asking members to include dedicated funding for HCBS in the next relief package.