American Rescue Plan can give disabled adults freedom of choice for care

COVID-19 has made the vulnerabilities in our nation’s nursing homes painfully clear.  And now, millions of Americans are suddenly realizing that many people with disabilities, including older adults, can live more safely at home than in a nursing home or other institutional setting while receiving the care they need.

In response to this new national consensus, the American Rescue Plan Act includes an unprecedented $12.7 billion for states to expand Medicaid “Home and Community-Based Services” programs. To our nation’s Medicaid directors and other state leaders, take note: this new funding represents an unprecedented chance to allow more people the choice and control to remain in their homes and communities. 

This is a phenomenal opportunity. And millions of people and families will be better off for it. But investment in this solution is a start, not the end game. States should use these dollars to go beyond allowing home-based care. They should encourage it for young people with disabilities, older people who are dependent on others to help them with the basic daily functions and people at any age who are paralyzed or live with a chronic condition. 

For the millions of eligible Americans, self-directing their home and community-based services can be their best option for remaining independent and safe. Through self-direction programs, people with disabilities have the choice and control to determine when and how they receive help. They are able to recruit, hire, and manage their own workers. Many people in these programs require help with what most of us take for granted: critical and intimate activities like dressing and using the bathroom. Having the option to hire someone who you know and trust — including family members or friends —is life altering.  

Those of us who advocate for self-direction know from both personal stories and concrete data that those who have opted for this choice report increased satisfaction when compared to other home and community-based programs. Research shows that people with disabilities who self-direct lead healthier, happier, and more independent lives. I deeply believe that individuals’ and families’ lives can be made better through this model. Further, innumerable human stories speak to why self-direction can be the difference between “living your best life” and “getting by.”  That difference really matters. 

Self-direction isn’t some obscure program. It has actually grown steadily over the last ten years. As of 2019, there were over 1.2 million people directing their own care in the U.S. alone. But, unfortunately, depending on where you live, you might not have access to this option. Some states only offer small self-direction programs with long wait lists (there are over 800,000 people on Medicaid waiting lists nationwide) or only to certain populations. Your neighbor with developmental disabilities might be self-directing, while your elderly neighbor just wishes she could hire someone she knows and trusts to provide care. This shouldn’t be an arbitrary option for some and not others.

And beyond the benefit to people with disabilities and their families is this: self-direction helps address the well-documented direct care worker crisis. If you can’t find someone you would like to hire in your area, what about your neighbor, your brother, or your daughter? The freedom to make these choices should be obvious. 

The COVID pandemic has only highlighted the power of self-direction. People who self-direct were able to feel safe knowing their workers were taking proper precautions against the virus under their supervision. With many workers already living in the same home, they weren’t exposing themselves to additional people outside their bubble. 

What started on a small scale 50 years ago (thanks in large part to devoted advocates with disabilities and their supporters), with total bipartisan support, is now available to some degree in all 50 states and the District of Columbia. And, importantly, we know that self-direction has built-in rules that are consistently successful at preventing fraud and abuse. Research on the impact of COVID on self-direction enrollment is still emerging. But we already know that New Mexico and Florida have increased their self-direction enrollment during the pandemic. There are reports suggesting that many more states are experiencing a similar phenomenon.

What’s missing — and what the new funding to states allows — is the opportunity to expand opportunities for many more people who would want to self-direct. People with disabilities deserve the option to live in the home of their choice. But they also deserve the flexibility to manage their own services and decide for themselves when and how they will receive help and who will provide it. 

It’s important to note that this new funding is only available to states for the next twelve months. Let’s use this time to showcase what can be possible when home and community-based services receive the funding these programs need. Advocates and legislators are already hard at work fighting to make this funding permanent. Using the new enhanced funding creatively to expand options such as self-direction can help to prove why continued funding is so crucial.

All states need to do is affirmatively act, because the opportunity to live better lives for millions of our most vulnerable people, courtesy of the new relief package, is now easier — and better funded — than ever.

Kate Murray is principal and cofounder at Applied Self-Direction