Individuals with Down Syndrome and other disabilities rely on Home and Community-Based Services (HCBS) to live, work and be involved in our communities. As a self-advocate, HCBS are very important to me and many others in the community, but they have been particularly crucial during COVID-19.

What are Home and Community-Based Services? Let me set the scene for you. They are services that allow individuals with disabilities to live independently. Depending on the state, services that are offered look completely different, but generally they cover things like housing, job coaches and transportation. Living in the community is a great alternative to living in institutions or other setting with a lot of people, especially during the pandemic, but many people with disabilities need these extra supports.

At this time, I currently live at home with my parents. I have been active in becoming more independent where I continue working on my life experiences. I currently have mentors who are beneficial to me in the community where I have goals to meet and attend to. One of my goals is to live on my own; I am currently seeking my own apartment with a roommate. We have been instrumental in making lists and figuring out what needs to be done. I am excited to take these next steps in my community with the support of Home and Community Based Services. I really appreciate my mentors and their continued support.

At the National Down Syndrome Society, we tireless advocate for these services, especially in the last COVID relief package called the American Rescue Plan. Even though there was money included in the last COVID relief package for HCBS, we continue to work and advocate on the Hill with other disability organizations so Home and Community-Based Services can be improved. Medicaid funding is crucial to Home and Community Based Services, the workforce, getting the right support and training and for staying safe. The funding includes an increase in pay for direct professionals and mentors, and health care providers that provide these important services.

The President included HCBS in his budget, which means they are a big priority for him. Members of Congress are currently working on a piece of legislation to improve these services. NDSS is at the table advocating for the community and what we need and want from HCBS. Things will heat up this summer, so stay tuned for more sizzling updates.