Home and Community-Based Services: Life Giving Supports for People Who Need Them

By: Nicole Jorwic, Senior Director of Public Policy, The Arc

Despite the devastating impacts of the pandemic, our nation’s response to COVID-19 has provided many new opportunities to expand badly needed resources to address the unmet needs of people who are most often overlooked. Notably, the American Rescue Plan Act of 2021 (ARPA) expanded access to Medicaid Home and Community-Based Services (HCBS). HCBS is a Medicaid benefit that funds the supports that people with disabilities and aging adults rely on, including people experiencing homelessness; one of the key advances of the ARPA is the ramp up of behavioral health supports and community-based services.

We now have the opportunity to advance this benefit even further by supporting the Build Back Better plan, which is proposing $400 billion dollars and an even more comprehensive reach to support beneficiaries and the people who serve them. We have an unprecedented chance to make a real difference in the lives of some of the people most in need and should take this opportunity to and make sure HCBS is fully funded.

Bringing Solutions to Scale

The Arc of the United States was founded seventy years ago by families like mine who wanted their loved ones with intellectual and developmental disabilities included in every aspect of life in their homes and communities. Unfortunately, this promise has been unfulfilled due to the lack of availability of HCBS. The Arc along with various partners have been pushing to expand HCBS funding to the full $400 billion in the initial Build Back Better proposal so that this program can finally provide resources to the fullest extent needed.

Much of this under resourcing can be quantified: currently the waiting lists for these services across the country sit at over 850,000 individuals. However, it’s likely that there are scores of people with disabilities experiencing homelessness who are need of these benefits, but may not have been able to even get on the waiting list yet.

As those people wait for services they are too often placed into institutions (sometimes called state schools, state operated developmental centers, or training centers) where people with intellectual/developmental disabilities live away from their families and communities.

The HCBS program is a welcome resource to provide people with disabilities and aging adults with needed supports to avoid institutions and keep them connected to their homes. One of the key lessons of the pandemic, of course, is that there is a clear connection between health and housing, so we must take this opportunity bring people with high service needs home. And as we consider this opportunity, we must not overlook the needs of people experiencing homelessness.

How HCBS Would Impact People Experiencing Homelessness

HCBS is a tool in ending homelessness. The scope of need is dire among people experiencing homelessness with complex care requirements. We know from the most recent federal data that unsheltered and chronic homelessness are both on the rise, with a staggering increase in the most medically in-need populations. Expanding this Medicaid benefit would help ensure that people experiencing homelessness with the greatest disabilities are connected to the appropriate services that will make life in housing a reality.

Not only that, but it would help enhance yet another resource for people experiencing homelessness that is currently underutilized. This past May, HUD allocated 70,000 new Emergency Housing Vouchers (made available through the American Rescue Plan Act) to house people currently experiencing homelessness or at risk of it. Expanding HCBS could make it faster for people with high needs to get connected to the appropriate services, which would, in turn, speed the ability match them with the Emergency Housing Vouchers. This would be a game changer in putting these vouchers to use for the people who need them most desperately.

A Matter of Justice

This is obviously a matter of health and housing. But it is a matter of justice.

The data is clear that people of color suffer vastly inequitable outcomes from lack of physical and mental health care access – to say nothing of the disproportionality among who experiences homelessness, and the inequitable outcomes people of color face within homelessness systems.

Bringing Medicaid HCBS to scale allows those of us working on behalf of both people experiencing homelessness and the broader population of people with intellectual and developmental disabilities to reduce those inequities. In doing so, we would be taking a step forward in improving facial equity in the health care and the housing systems.

More Than Just Medicaid

For me the work on this issue is also rooted in my love for my brother, and the passion to ensure that everyone has access to the supports that they need. My brother Chris is 32 and receives Medicaid HCBS services in Illinois; those services have been a saving grace for Chris and the whole family. The inclusion in the community, that these services afford to Chris, is the same thing that my parents have been fighting for Chris’ whole life, and what drives Chris in his own advocacy work to ensure that his “brothers and sisters in disability” have access to what they need. My brother Chris has also had times when he didn’t have the services that he needed, that was a difficult time for our whole family, but mostly for Chris, because it left him stuck at home, with nowhere to go, and no way to use his voice, leading to very low moments.

That was during the same time period that The Arc network was fighting hard to protect access to Medicaid HCBS. Federally, the huge cuts proposed in 2017 to the Medicaid program would have disproportionately impacted HCBS due to the fact that they are optional services. During those months of Hill meetings, I would call home, hear the sounds of Chris having a rough day, and be reminded why the push to protect Medicaid was more than just a professional endeavor. I would take those moments where I was close to tears because of my brothers frustration, and turn it into fuel to keep going.

Moving HCBS Forward

These moments with my brother drive me as we have fought for more funding these services throughout the pandemic, because supporting more people to live safely in the community is our mission come to life. We will continue to push and share the stories of people with disabilities, people experiencing homelessness, aging adults, and family caregivers who are currently filling in the gaps that the service system leaves behind. To ensure that people have adequate care and supports when transitioning out of homelessness, HCBS must be an option on the table.

The more voices we bring to the table, the better. This last week of October is a pivotal one, when we need to let Congress know the value of HCBS. Use The Arc’s advocacy tools to share your story and let your legislators know that HCBS can provide vital services for people with intellectual and developmental disabilities, and can help end homelessness for those who are at greater risk – and Congress needs to know that.