Millions of Americans live with intellectual and developmental disabilities (I/DD) like autism. Having reliable health care plays a critical role for people with I/DD so that they can access the care services they need to address their needs. For example, the Medicaid program provides a safety net for people with disabilities so they can lead happy and healthy lives.
To learn more about how Medicaid helps people with I/DD and their families, we sat down with Nicole Jorwic, the Senior Director of Public Policy for The Arc, a Modern Medicaid Alliance member. The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.
Modern Medicaid Alliance: How does Medicaid help individuals living with disabilities receive the care and support they need?
Nicole Jorwic: When it comes to serving and supporting individuals with disabilities, Medicaid is really the only game in town. It provides long-term services and supports (LTSS), including home care, day support, and employment support services. Many people don’t understand that Medicaid is a lot more than just a health program. While it does obviously take care of the health and well-being of individuals with disabilities, it ultimately provides the support they need to live in their communities.
Some of the programs that Medicaid provides come through the home and community-based services waiver. Medicaid is structured in a way where there are mandatory and optional services. Mandatory services include things like nursing homes, institutional care and a lot of other health programs. Optional services include things like home and community-based services. These optional services provide the support that many people with disabilities rely on heavily. These are provided through waivers in different states, providing services like job coaches, personal assistants, residential services, and the core services that help an individual be productive members of their communities.
Modern Medicaid Alliance: Where can people living with disabilities and their caregivers learn about how to enroll in Medicaid?
NJ: There are many different ways to learn about how to enroll in Medicaid and the programs it covers. Every state has a Medicaid agency that’s responsible for overseeing the Medicaid program. They’re called different things, so that can be confusing to families. There are hundreds of state and local chapters of The Arc, so there’s The Arc of New Jersey and The Arc of California, for example. The Arc is a great place for families to go, whether they have a family member with an intellectual development disorder (I/DD) or another disability. To find out what services your state provides, how to get enrolled, and find your eligibility, the place to go would be to the state Medicaid agency.
Modern Medicaid Alliance: How does the Consortium for Citizens with Disabilities (CCD) Health Task Force advocate for individuals benefiting from LTSS?
NJ: We know that individuals with disabilities and their families want home and community-based services. And we know that because if people didn’t want those home and community-based services, they wouldn’t be willing to wait on waiting lists for those services. The CCD Task Force and disability advocates all over the country are working to make sure that we put home and community-based services on equal footing with institutional services. The CCD LTSS task force and many groups are working to make community-based services mandatory to reduce waiting lists. If we made home and community-based services mandatory, my brother with a disability, for example, would be able to move wherever he wanted, whether it be for a job or just to be closer to family, without losing all the services he has in one state as he moves to another state.
The Task Force is also working on getting more funding into states for rebalancing through the Money Follows the Person program. Disability advocates have been working on this program for decades in a bipartisan way. This program provides additional federal funding for states to move individuals with disabilities and aging individuals out of institutional settings and back into the community if they choose to do that. So far, it has moved 91,000 individuals since it was signed into law in 2005. We continue to get short term reauthorizations, but we need a long-term fix.
Modern Medicaid Alliance: What are some of the threats to Medicaid funding for individuals living with disabilities and their families that concern The Arc today?
NJ: Unfortunately, there are still threats to the Medicaid program that individuals with disabilities and families all over the country, including The Arc, are very concerned about. The biggest threats come to those home and community-based services and the long-term services and supports the things that are keeping families up at night. Block grants are one area of concern because of their impact on waiting lists and the ability to respond to public health emergencies. The real threats, ultimately, are cuts to state funding that threaten services for people with disabilities.
Maintaining funding to support individuals living with disabilities can mean life or death for an individual. This isn’t only them getting the healthcare that they need and access to services that they need, but also to have the services they need to thrive in their communities. When one staff member quits or one program closes down, the whole ecosystem for a person with a disability can be disrupted. It’s imperative to continue funding Medicaid services for individuals with disabilities so that they can have access to all the supports that they need to thrive in their communities.
Modern Medicaid Alliance: Why is it so important to educate people about the value of Medicaid and the positive benefits that it has in the community?
NJ: Without public understanding of these services, we’re not going to get the level of investment that we need to really grow these services. I think we know that people support individuals with disabilities and aging individuals, but we have to make sure that they understand the programs that actually do that support, which is Medicaid. Any cut or any threat to it is really a threat to all of us, which is why we, at The Arc, are really advocating and encouraging individuals with disabilities and their families to tell their stories and to talk about these services and what they mean to them. We all know people with disabilities in some lines of our life. We all know people who are aging. It’s important to know the programs that support those folks.
Modern Medicaid Alliance: Why did The Arc join the Modern Medicaid Alliance?
NJ: We joined because we thought it was very important that there was a group of experts coming together to talk about the importance of protecting Medicaid. Disability voices are obviously very important when talking about protecting Medicaid, so we are excited and happy to be at the table as part of the Modern Medicaid Alliance.
Watch the video version of our Q&A here.
Nicole Jorwic is the Senior Director of Public Policy at The Arc, a national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. Prior to joining The Arc policy team Nicole served as Senior Policy Advisor for the state of Illinois. Prior to that appointment, Nicole served as the CEO/President of the Institute on Public Policy for People with Disabilities where she continued the Institute’s mission to improve the lives of people with disabilities and assisted the leadership of the state of Illinois in developing public policy driven best practices in serving individuals with disabilities.
Nicole is also an accomplished special education attorney and an advocate for students with disabilities, with a focus on transition-aged youth. Nicole received her JD and Child and Family Law Certificate, from Loyola University Chicago. She received her BS from the University of Illinois. Nicole is also a sibling, her brother Chris is 30 and has autism.