Column: Lawmakers need to listen to people with IDD

Of all the trips I've taken, I believe Washington, DC has been the most monumental. I will talk about this trip for the rest of my life!

It was my first visit to our nation's capital. I was there because I received an invitation from The Arc of North Carolina, a 75 year old advocacy organization, to attend the annual Disability Policy Seminar (DPS). The DPS brings together people with disabilities, their family members, and different disability organizations to come together and learn about the important issues facing our country.

Day One was a day of learning about what is happening right now that impacts the disability community- deep funding cuts ahead for people who rely on Medicaid, mostly, but also education and other funding lifelines that will harm families. Day Two was entirely on Capitol Hill. It included a rally outside the Senate side of the Hill, which I proudly emceed, followed by planned meetings with House Members and Senators from across the country.

There were over 900 attendees from across the US with one collective objective: inform the Representatives who were elected by us how critical Medicaid and other systems are to those living with developmental disabilities. People like me.

Some of you may not know, but I have autism spectrum disorder, which falls under the category of Intellectual and Developmental Disabilities (IDD). Perhaps you know someone with IDD: Down syndrome, Fragile X syndrome, cerebral palsy, Prader-Willi syndrome, Klinefelter syndrome, Rett syndrome, and Williams syndrome are some examples, and then there are those without a formal condition but who have mild, moderate, or severe IDD which impacts every part of their life. These are lifelong conditions that start early in life and require support over a lifetime and affect not only the person, but also their families and caregivers and a large system of care providers. Chances are, even if you do not think you know someone with IDD, you certainly have encountered someone at school, church, workplace, civic groups, stores- really, anywhere. Developmental disabilities affect people of every race and socioeconomic class- it does not discriminate. It doesn't matter if you are a Republican or Democrat, Christian or Jew or Muslim, American or non-American- people with developmental disabilities deserve the same things in our life that you have in yours, and without barriers. According to estimates by the University of Minnesota, there were 8.38 million people in the US with IDD diagnosis in 2020.

Accessing Medicaid services is not always easy, but I am one of the lucky ones. It provided me with years of home and community based services that helped narrow the gap between my developmental age and my chronological age. I can't imagine where my life would be now or what it would be like if I had not had access to those services. Services that were funded by Medicaid. In North Carolina, few people have access to the North Carolina Innovations Waiver (Medicaid) services. Currently, there are 20,000 people who deserve them that are stuck on a waiting list, and the list is growing every day.

At twenty-seven years old, attending this event made me keenly aware of how much our government and our elected leaders make decisions that impact our daily life, a fact I had been unaware of until now. I guess I missed a lot in 4th and 5th grade.

In North Carolina, Medicaid cuts are slated to be implemented on July 1st. This is impacting North Carolina right now because of our state budget issues, and the federal cuts from recent legislation will additionally begin impacting families in 2027. People in North Carolina who rely on Medicaid are terrified. This doesn't allow much time for our state to prepare for how they will meet the difference between what is funded federally and what they intend to fund going forward at the state level when HB1 goes into effect- which will create a huge shortfall. This means deep cuts for those with intellectual and developmental disabilities, an already underfunded program. You might think that this is inaccurate information, but I encourage you to look deeper at how the providers who are lifelines for people like me will be impacted by these cuts as well. People with disabilities use Medicaid- it's not just health insurance. It helps them access their entire world through these home and community based services. It keeps families working and whole. Without a robust system, it all falls apart. The stakes are high for families to not have everything they need to live and contribute in our communities.

I have a soft heart, and this hurts my heart. I know, care about, and love many friends with IDD. As I learned more about the funding cuts and their impact, my passion for the cause grew. By the second day, I was fired up and brought sincere energy to the rally as the emcee before we all headed to our designated meetings to advocate for an end to the cuts and minimally, a two-year delayed implementation to allow states time to prepare for the impact and solution for funding shortfalls.

How can you help? I am glad you asked! No matter which side of the aisle you're on, this is an issue for all of us. As a nation, we need to come together for those with IDD. As the City of Monroe, Union County, we need to come together. It is time for our voices to be heard in Washington! Their decisions reach well beyond the confines of Capitol Hill! Send an email to our President, too! He needs to know how this impacts our disability community. They all need to know! Here's the link to find your representative: usa.gov. You can also go to The Arc's website, state or nationally, to learn more about the work they do. You can go to www.arcnc.org and www.thearc.org to learn about each of the Arc's chapters.

I am a proud citizen of Union County and appreciate the opportunity to serve you as a general assignment reporter for The Enquirer Journal for nearly 8 years. Thank you for your support of me and belief in me as a person living with IDD. Thank you for taking time to call, write, or email our representatives, letting them know you stand with those who have IDD. Because these funding cuts will not only impact individuals with IDD and their families, but it will also impact our entire community!

Michael Wayne O'Neill is a reporter for The Enquirer Journal (Monroe, N.C.), writing news and sports stories. He can be reached by emailing [email protected].