Modern Medicaid Alliance (MMA): Can you tell me more about The Arc and who the organization serves?
Nicole Jorwic (The Arc): The Arc is a national community-based organization advocating for and with people with intellectual and developmental disabilities. We work to advance our vision that every individual and family living with disabilities in the United States has access to the information, advocacy, and skills they need to support their full inclusion and participation in the community.
MMA: What is the importance of home and community-based services (HCBS) for individuals living with disabilities?
The Arc: HCBS are vital in several areas of life for individuals living with disabilities. First, HCBS are funded through Medicaid and provide essential support that many people don’t realize, such as personal hygiene, getting out of bed, handling medications, supporting people to live independently and at their jobs.
Secondly, and why they are so important for individuals living with disabilities – HCBS mean independence. Without HCBS, family members have to step in to fill the gaps in care, or people end up in institutions that they might not want to be in.
MMA: What is Medicaid’s role as it relates to HCBS?
The Arc: Medicaid is the main and only game in town when it comes to funding HCBS. When programs are in peril, we often get contacted by family members saying they had no idea the programs were funded by Medicaid. There is a need to continue educating people about Medicaid’s role in the disability and aging communities and, critically, the general public.
MMA: How have the needs of Medicaid beneficiaries changed around HCBS and how has the pandemic shifted the HCBS landscape?
The Arc: The HCBS program faced major cuts five years ago, leading to an increase in public education and awareness around the needs of the disability community. That focus has led to greater attention on HCBS. The Money Follows the Person demonstration, a Medicaid program that seeks to increase the use of HCBS and reduce the use of institutionally-based services, was reauthorized for 3 years. More recently, the American Rescue Plan provided a one year 10% enhanced federal matching funds for states to increase access and improve provision of HCBS. Overall, funding threats have led to a better understanding from the general public and led to further pushes from advocates for more legislative wins.
The COVID-19 public health emergency has shifted the focus on HCBS quite a bit. The government created a lot of flexibility in the program through the 1135 K Waivers, such as allowing for reimbursement for remote services. The pandemic has also exposed what advocates have always known: there is a public health hazard in larger care settings, such as nursing facilities, which are often an alternative to HCBS. Additionally, there has been the realization that we have unpaid family caregivers that are filling in the gaps of these services, and the system is falling short.
MMA: What are the most pressing current issues facing HCBS from your perspective?
The Arc: Access and infrastructure. Regarding infrastructure, we need to make sure there is enough funding for services, but also enough to support the workforce who provide those services. The average hourly wage for these individuals is less than $11, so we need to have a workforce that is making a family-sustaining wage.
In regards to access, right now, 820,000 people are on waiting lists for HCBS and relying on unpaid family caregivers as well as facing the risk of institutionalization. The Arc has more than 600 chapters across the country, and a lot of them provide HCBS, wanting to support provision of those services and share their stories.
MMA: What are your current advocacy priorities regarding HCBS?
The Arc: HCBS received a historic commitment to new funding through the introduction of the Better Care Better Jobs Act. The bill would address institutional biases in Medicaid programs that regard HCBS as optional services and help eliminate waiting lists. We are rallying support for the bill and calling on Congress to ensure its swift passage.
We are also currently leading Medicaid Can’t Wait, a nationwide campaign to raise awareness about the vital need for HCBS. Additionally, we recently joined Care Can’t Wait, a coalition committed to advocating for federal investment in HCBS so that more individuals living with disabilities can access these vital services.
Nicole Jorwic is the Senior Executive Officer for State Advocacy at The Arc. For more information about The Arc’s Medicaid Can’t Wait program, check out our recent Medicaid Spotlight piece.