Melissa Ortiz

Commissioner

Administration on Disabilities

330 C Street SW, Room 1006-B

Washington, DC 20201

Dear Commissioner Ortiz;

I hope my words can convey to you the positive impact the Missouri Development Disability Council has had on my entire family’s life. As a parent of a 30 year old son with significant disabilities, and a long-time advocate, I wish I had the literary capability to fully explain the need and importance of maintaining long-term funding, as well as the division between State Developmental Disabilities Council (MODDC), the Missouri Brain Injury Advisory Council (MBIAC) and the Missouri Statewide Council on Independent Living (MOSCIL).

There is so much of the past 30 years that I have forgotten because of the intense and long term stress of raising my son, Taylor; however, I will always remember the first time I met someone from the DD Council at a conference when he was only 3. That was a day that changed mine and family’s life forever! I truly can’t imagine where we would be without the trainings, education, and connections through the Council. As I sit here typing, trying to convey the need, tears are streaming down my face.

I learned a long time ago to share my story from my heart. I’ve attached a picture of Taylor with his favorite llama, Maverick. He is so much more than a diagnosis of autism and developmental and intellectual disabilities. So many have learned so much from him – he has truly changed people’s lives – I wish you could meet him! He’s non-verbal, and struggles to get his point across, yet makes friends with so many. He has a gorgeous beard, a huge heart and a noticeable love for people and animals.  We’ve come so far from the days of him hitting his head with his fist over 300 times a day, not sleeping, throwing punches, spitting, and biting holes in his arms out of frustration.

Through the many trainings offered by the MODD Council, I quickly became involved in helping write legislation and testifying before the Missouri House and Senate. I was a consultant with the Department of Education and the Department of Mental Health. I helped start an organization that had the first private service coordination contract in the state working with families and teaching them how to navigate the very complex system that provided services for their children and families. This truly was an example of “teaching a person to fish”; what a great use of tax dollars.

The level of services my son needed required me often to create or change what was offered at a state or federal level, and I always worked to make it as fiscally responsible as possible. I knew that there were so many other families and individuals that were in a similar, difficult, and often desperate situation, and wanted to make every service dollar go as far as possible. My understanding of systems navigation and ability to train parents and professionals in the years to come would not have been possible without working with the DD Council. Taylor certainly would not have then or now the services needed.

The proposed cuts and consolidation between these three federally and often state mandated organizations would create unnecessary costs to the states and have an absolutely debilitating impact on individuals with disabilities and their families. With the state cuts and proposed cuts to Medicaid, these are truly dark and frightening days for families and individuals with disabilities. As the incidence of disabilities and demands for services continue to grow with the population, now more than ever, we need these separate councils to facilitate the most responsive and responsible way to expand and develop community resources and talents. Please, help us continue to make life a little easier for families and individuals with disabilities!  

With gratitude,

Sheila and Taylor Nichols

417.773.2033