AARP Urges Congress to Invest in Home Care

This article was written by AARP's Chief Advocacy and Engagement Officer Nancy LeaMond.

To understand the impact of Medicaid home care, called home- and community-based services, consider the experiences of just two family caregivers out of millions.

Susan, 66, from South Carolina pays out of her own pocket for full-time care to keep her adult son, who is blind and has cerebral palsy, out of a nursing home. She applied for home care through Medicaid in 2017 and was put on a waiting list for services. Today, Susan has yet to receive any assistance, and is now number 3,089 on that waiting list. Even though her son is eligible to receive Medicaid home care services, Susan returned to work after retiring in order to afford the care her son needs at home. She worries about the future.

Now, here’s a very different story. Chuck, 68, from New York applied for Medicaid home care to help him care for his elderly mother and an older brother who has schizophrenia, diabetes and nerve damage that limits his mobility. Four times a week, an aide arrives to provide critical help with cleaning, bathing and other household needs that enables Chuck to keep his family under one roof.

While Chuck’s story shows the clear benefit of Medicaid home care, Susan’s experience is all too common. More than 800,000 Americans are currently on waiting lists for home care, and the wait often takes years.

Offer better, safer housing options
We need to provide older Americans with options to live in their homes and communities when health issues make that harder, and Congress now has a historic opportunity to do just that. 

The U.S. House passed legislation that contained a large investment to help improve Medicaid home care, such as by expanding services and reducing the waiting list for services and strengthening the paid long-term care workforce — so aides like those who help Chuck’s family can earn a living wage with benefits and the opportunity for training and career advancement.

We urge the inclusion of a large investment in home care in any package that moves forward in Congress and urge the Senate to act.

COVID-19 has reinforced the need to provide better, safer options for high-quality long-term care. More than ever, people need access to affordable home care options so that nursing homes are not their only choice. Yet this concern runs far deeper than the pandemic. A person who turns 65 today faces almost a 70 percent chance that they will require long-term care in their lifetime. Of those turning 65, 20 percent will need more than five years of care. And if you do need care, your options to stay at home depend on where you live and may be extremely limited.

We want lawmakers to be aware of these facts. Any one of us could end up scrambling to find services to help a loved one — or ourselves – remain at home.

Reprioritize Medicaid provisions
Part of the challenge is an imbalance in Medicaid’s priorities. The program has long required states to cover care in nursing homes but does not have such a provision for care in the home and community. Instead, states often navigate a complex waiver process to offer home care, and Medicaid long-term care options for Americans vary wildly based on where they live. 

This institutional bias continues to limit the availability of home care services despite the fact that most older adults want to live independently. In a recent AARP survey, for example, three-fourths of adults age 50-plus told us they wish to remain in their current homes and communities for as long as possible.

That was Patricia’s wish for her mother. When her mom developed dementia, Patricia, 54, became the caregiver, while trying repeatedly to get home care through Medicaid in her state of Indiana. Patricia’s requests were turned down four times. Ultimately, caring alone for her ailing parent became too difficult, and Patricia felt she had no choice but to move her into a nursing home. 

Provide training, advancement for aides
Such home care is not only what Americans want, it is also cost effective. On average, Medicaid can provide services to three people in their homes and communities for the cost of one person in a nursing home. Overall, just about 58.6 percent of Medicaid long-term care spending went for care in the home and community in fiscal year 2019, a figure that varies significantly among states.

A large home care investment would put Medicaid long-term care spending more in line with people’s priorities for independence, while also filling a need to upgrade the workforce. The low-paid aides, who are often women of color, do important work that can make a big difference in an individual’s quality of life. They need higher pay, training opportunities and chances to advance their careers.

For all these reasons, AARP supports Congress’ making a historic investment to expand services that help older adults and people with disabilities live in their homes.

After a lifetime of hard work and contributing to society, seniors deserve to live with independence, security and dignity. They should not be forced from their homes for lack of care options. Such services should be affordable and available to all who need them.

AARP urges the Senate to include this investment in home care as part of any budget reconciliation package as soon as possible. Seniors are waiting.