By Ashley Burnside

People with disabilities are critical members of our communities. They are students, workers, and parents. They have jobs and hobbies, and just like anyone else, they want to live in their own homes near their loved ones. But our healthcare system does not make this easy to do for people who need supports in completing daily activities, like getting dressed, bathing, or taking their medication. Not all people with disabilities need this kind of support, but for those who do, having direct service providers who can come to their home to help them engage in those kinds of activities allows them to live in their communities with dignity, rather than only having options of living in institutional care settings.

This kind of support can be provided through home and community-based services (HCBS) under Medicaid. For people living with disabilities, HCBS provides long-term services and supports in the individual’s home, rather than in institutional settings. Providing these services to people in their own homes and communities can reduce social isolation for people with disabilities  and is also cheaper than receiving  such care in institutional settings. But HCBS is extremely underfunded and not available to everyone who needs it.

Medicaid provides access to institutional long-term services and supports as a mandatory benefit, but HCBS services are an optional benefit. This means it is largely up to states to decide who they provide HCBS services to, rather than ensuring it is available for all individuals who need it. Almost 850,000 people with disabilities have been left on waiting lists, sometimes for close to a decade, trying to access the HCBS services that they need.

Demand for HCBS was already high before the COVID-19 pandemic, and the rising healthcare needs stemming from the disease increased demand even more. When people with disabilities are forced to wait for their HCBS services, their loved ones may have to cut work hours to provide such care for their family member, or they may be forced to live in an institution rather than in their community. This Medicaid HCBS policy is outdated, ableist, and doesn’t meet the needs of our community members with disabilities.

Access to HCBS supports should be a guaranteed service for people with disabilities who need it – not an option that the lucky few can receive after years on a wait list. This is especially urgent following the COVID-19 public health crisis, which disproportionately impacted residents and staff at nursing homes and other long-term congregate care facilities (such as assisted living facilities). More than 30 percent of COVID-19 deaths nationally have been among residents or staff in such institutions. Living at home reduces the risk of mass disease transmission among people with disabilities and healthcare workers. The health, independence, and happiness of people with disabilities and their loved ones are improved when they have accessible HCBS options.

Providing increased funding towards HCBS services also benefits family members of those with disabilities and the direct care service professionals who help individuals with disabilities complete daily tasks, like bathing and preparing food. Direct care workers are underpaid, and face high rates of turnover. The average wage for these workers is less than $11.52 per hour, despite the essential care they provide for people with disabilities. Direct care workers are disproportionately women and people of color, meaning they already face a significant wage gap and unequal access to wealth. When direct care workers have high turnover rates, the care needs will likely fall on the family members of individuals with disabilities. Increasing the wages for direct care workers is essential to promoting wage equity, valuing the contributions of care workers, and supporting people with disabilities.

Congress should include additional funding for HCBS services in the economic reconciliation package as one way to invest in people with disabilities and to bolster the care economy. This should be in addition to other investments that support people with disabilities, and other investments towards family care. The House-passed version of the Build Back Better Act included $150 billion in funding for HCBS services, which is a positive step in the right direction. President Biden and the administration should continue to advocate for the importance of HCBS investments for people with disabilities. We are all better off when we make these investments in home and community-based services (HCBS).