As parents, we all want our children to grow up as healthy as possible and find their place in the world. We want our babies to thrive as they become children, teenagers, and eventually adults, and to be wholly included in our communities.
But for many families who have kids and adults with disabilities, this shared hope can be a monumental struggle without the right kind of supports and services. That’s why we need Congress to take action to improve our long-term care system to enable kids and people with disabilities, as well as older adults, to live safely at home and thrive in their communities.
What’s happening? Home- and Community-based services (HCBS) are mainly covered under Medicaid and are typically not covered under Medicare or private insurance. However, while state Medicaid programs are required to cover care in institutional settings like nursing homes, their Medicaid-funded HCBS programs—which enable people who need services to stay in their homes and communities—have limited spots available leaving nearly one million people on waiting lists. This leaves many families facing the difficult choice of whether to provide the needed care themselves or institutionalize their loved one so they can receive the supports needed, even though the vast majority prefer to receive care at home. Access to HCBS affords disabled people of all ages the civil rights they are entitled to—the self-determination to choose where they want to live.
The COVID-19 pandemic has demonstrated just how important it is for families to have the option to keep their loved ones at home, given the large number of COVID-19 deaths in congregate settings, including nursing homes. The American Rescue Plan which passed earlier this year included a temporary provision to increase the federal match rate for HCBS by 10% to build capacity in state HCBS. While this is a good start, much more is needed in order to address the needs of people with disabilities and the inequities that exist in long-term services and support programs across the country after decades of lack of investment in the HCBS infrastructure.
Right now, we have a historic opportunity to invest in the care infrastructure that our families and communities need to thrive and prosper—and increasing funding for HCBS must be included. This funding can help clear the Medicaid wait lists for home and community-based care and assist people in moving from large congregate settings back into their homes and communities. Additional funding will also help to begin to address the significant race and population-based inequities that often occur with access to HCBS, as well as the pay inequities for direct care workers who are most often women of color and immigrants.