Disability Writes Campaign

My son, Jack, is funny, loving, curious, kind, and is an amazing big brother.  For the most part, he does a great job communicating, but he also only says about 20 words.  He uses assistive augmentative communication (AAC) to communicate.  Robert F. Kennedy (RFK) Jr., the US Secretary of Health, recently remarked that kids my like son are a tragedy to the family.  RFK is wrong.  Our son is not a tragedy in any way.  He is the most amazing child, and I am lucky to be his mother.  He has benefited from special education services since he was three and will continue to require these services as he goes through high school and most likely as an adult.  Jack has access to school and his services thanks to the Individuals with Disabilities Education Act (IDEA).  The Office of Civil Rights in the Department of Education oversees state discrimination complaints and IDEA compliance. Without this oversight, I am concerned that states may not feel fully accountable to fully abide by IDEA.  There is already an impact with the reduction of discrimination investigations due to the initial cuts made by the Department of Government Efficiency (DOGE). My son benefits daily from the special education services provided through his school and these must continue for him to be able to live an independent life with dignity. 

My brother is a whiz at crosswords, plays five instruments, loves horseback riding and bowling, and can make me laugh like no one else. He calls my dog his ‘niece’ and always beats me in mini golf. He has job cooking in a local restaurant and is so so proud of that. He flies alone to come visit me. When he turned 30, family members flew from all over the country to celebrate him. He is not a burden, he is simply my brother. But to get that restaurant job, he needed Medicaid waiver funding to get a job coach. He uses waiver funding so he can have support staff help him go grocery shopping, to the library, and to the ATM, so he live up to his full independent potential. Without Medicaid waiver funding, his quality of life diminishes – his dignity and independence are threatened. And this is true for millions of people. No matter side of the aisle are on, that should be unacceptable.