Among the possible items to be included in President Joe Biden’s caregiving plan, part of a multi-trillion dollar social spending plan under consideration in Congress, is an expansion of Medicaid eligibility and funding to improve states’ in-home care services. USA Today Network reporters Madeleine O’Neill and David Robinson take a closer look at the possible impact of this step.
The need
Much of the Biden administration’s $400 billion plan for improving in-home care services hinges on states taking advantage of reforms to Medicaid, the government health program for low-income and disabled Americans.
Central to the effort are proposals to offer added federal funds to states as an incentive to fill gaps in current in-home care services, which are primarily offered through a patchwork of state-run programs.
The stakes are reflected in the fact about 75.4 million people currently rely on Medicaid, or nearly one in four Americans. Yet there are striking disparities in their ability to access in-home care services depending on which state they call home.
Further, Medicaid — which is jointly funded by federal, state and local governments — has historically struggled to unravel decades of policy bias that hindered in-home care in many states, in favor of long-term care provided in nursing homes and other institutions, according to the latest federal analysis in January.
What’s under consideration
Several state-level and federal proposals, including various forms of Medicare for All and single-payer legislation, have sought to address the fundamental issues of how health care, including nursing home and in-home care, is funded by government.
A new bill, the Well-Being Insurance for Seniors to be at Home Act, seeks to specifically address the financing of elderly care by creating a federal long-term care insurance program.
Existing programs
Among our findings regarding Medicaid and in-home care:
- Total Medicaid spending on long-term services and supports, which includes in-home and institutional care, was $129 billion in fiscal year 2018, up from $124 billion in 2017.
- From 2008 to 2018, the total spending has grown by about 2 percentage points each year, when adjusted for inflation.
- The percentage of this Medicaid spending devoted to home- and community-based services increase from 43% to 56%, reaching about $72 billion in 2018.
Meanwhile, Arizona, Minnesota, New Mexico, Oregon and Wisconsin each spent more than 75% of their respective Medicaid dollars on home- and community-based services in 2018.
By contrast, Florida, Indiana, Louisiana, Mississippi, New Jersey and Rhode Island all spent less than 40% on those same services in 2018.
Benefits/limitations
One example of the in-home care accessibility divide is the size of waiting lists, which totaled nearly 820,000 people in 2018, according to an April report by Justice in Aging, an elderly legal advocacy group.
Older adults on those lists waited an average of at least 28 months to begin getting services, the report noted, adding the wait list tally is likely only a fraction of the unmet need, in part due to eligible Americans struggling to navigate the complex system of Medicaid waivers and programs that vary by state.
Further, because federal Medicaid law does not require states to provide home- and community-based services to all populations in need, “significant race and population-based inequities arise and often intersect,” the legal advocates noted.
For example, half of Michigan’s population lives in 10 counties in the southeast part of the state. In one of those, Wayne County, 40% of older adults are non-white. However, only one-third of the state’s total waiver slots are available in those 10 counties, the report said.
“In other words, there is only one waiver slot for every 58 eligible individuals in those counties compared to one slot for every 20 eligible individuals in the rest of the state,” the report added.
Other concerns about long-term care services, in general, focus on the fact limited affordable options exist, leaving many Americans reliant on Medicaid alone, experts said.
“As a society we have put our elderly people who need a lot of care into nursing homes and then we impoverish them and their children by spending down their savings,” said Dr. Nancy Nielsen, senior associate dean for health policy at Jacobs School of Medicine and Biomedical Sciences in Buffalo.
“And ultimately we have them go on Medicaid, where we all pay for it,” she added.
Another area of disparity among states involves programs that compensate family caregivers.
A few states allow spouses to serve as at-home caregivers and be paid through Medicaid. But most states don’t, or they have strict limitations on which family members can get paid to care for a loved one.
It can feel arbitrary to family caregivers trying to navigate the system, experts said.
“On the whole, it’s not a great system, and there are a lot of barriers and challenges for family caregivers,” said Charlotte Dodge, the senior advocacy manager for Caring Across Generations.
A few innovative programs have tried to fill the gap, including the Veterans Health Administration’s Caregiver Support Program.
The two-tiered program offers basic resources to anyone caring for a veteran and a more comprehensive set of support services for veterans and caregivers who meet a set of eligibility requirements.
The higher level of services includes a stipend for family caregivers, which can range from $652 to $2,371 per month, medical services for the caregiver, counseling and mental health services, respite care and travel expenses.
It is considered “the gold standard” for family caregiver support services, Dodge said.
About this project
This and related stories on the Biden administration’s caregiving plans are produced through the New York & Michigan Solutions Journalism Collaborative, a partnership of news organizations and universities dedicated to rigorous and compelling reporting about successful responses to social problems. The group, supported by the Solutions Journalism Network, has been producing stories on potential solutions to the challenges facing caregivers of older adults.
David Robinson is the state health care reporter for the USA TODAY Network New York. He can be reached atdrobinson@gannett.com and followed on Twitter:@DrobinsonLoHud
Madeleine O’Neill has covered the Maryland State House and state issues for the USA TODAY Network. Email questions or story ideas to project editor Michael Kilian at mkilian@gannett.com
