VOICEOVER: Sumukha Terakanambi has something to say about Medical Assistance.
SUMUKHA TERAKANAMBI: My name is Sumukha Terakanambi. I’m 26 years old, and I live in Lakeville, Minnesota. I am an Asian Indian male with black hair, a black beard, and a black mustache. I am wearing glasses, a gray t-shirt with a Champion logo over a black long sleeve shirt. I am sitting on a black and gray power wheelchair.
When I was four years old, I was diagnosed with Duchenne muscular dystrophy, a rare neuromuscular disease that causes muscle deterioration over time. As a result, I require assistance with most physical tasks, including acts of daily living. I also use a power wheelchair for mobility.
Just like anyone else, I have the desire to work and be active in my community. I currently work as a public policy consultant with the Minnesota Council on Disability and the Rare Disease Advisory Council. I also serve on the Minnesota Governor’s Council on Developmental Disabilities and the Dakota County Disability Advisory Council as a self-advocate.
At this moment, it feels like the disability community is under attack. Every day I am bombarded by news reports, advocacy action alerts, and social media posts about threats to special education, civil rights, health care, rare disease research funding, and inclusion initiatives. As an advocate, it is overwhelming to address multiple issues at once.
One issue that is especially top of mind for me is Medicaid. It is unfortunate to see proposals being considered by lawmakers to make cuts to such a vital program for people with disabilities. Right now I’m on the CADI waiver, which is paid for important services such as personal care assistants for acts of daily living, transportation to get to work and into the community, home modifications to make my home more accessible, durable medical equipment to assist with personal cares, and assistive technology to support my employment. These services have provided me with independence and have greatly improved my quality of life. Losing any of these services would cause significant hardship for me and my family. It would cause my health to decline, and would prevent me from making contributions in my community.
Hearing about possible cuts to Medicaid at the federal and state level has caused a lot of stress and anxiety for me. I am constantly thinking about how I and others would function if there were restrictions of eligibility or reductions in benefits. While advocacy is extremely important, it is mentally and physically taxing to always have to fight for our basic needs to be met. This ongoing fight is making it harder to focus on work, and my other engagements in the community.
I urge both state and federal lawmakers to think about how their decisions affect people with disabilities. We must all work together to protect disability services. It is important that our state prioritizes the needs of people with disabilities, and ensures that we continue to build on the progress that has been made. Thank you.