I spent eight years on the Kansas Intellectual/Developmental Disability waiver waitlist.
In my years on the list, I experienced more psychiatric hospital stays than I can count or even remember. I survived a suicide attempt. I wore my family out emotionally and physically as they tried to help me navigate a world that often felt unaccommodating and overwhelming.
There were times when my meltdowns led to the police being called — and then I ended up in the back of a police car, even though I did nothing illegal or because I was a danger to anyone.
I just lacked the proper supports that could have de-escalated the situation.
I’ve spent countless hours sitting in emergency rooms, waiting for help that often felt out of reach.
The truth is, so much of that pain, chaos and trauma could have been avoided if I’d had the right support at the right time I needed it.
Proper funding for mental health waiver services doesn’t just improve lives — it saves them. It gives people with intellectual and developmental disabilities and their families the chance to thrive rather than just survive.
There are more than 4,300 Kansans who are on the I/DD waiver waitlist. That’s 4,300 names, 4,300 stories, 4,300 lives placed on hold.
These are not just numbers on a Kansas Department for Aging and Disability Services spreadsheet. They are real people with dreams, struggles and potential. I know because I was one of them.
For those on the waitlist, each day that passes is another day stolen from them — not by chance, but by a broken system that has the potential to be fixed.
This year, we have a chance to change that. Momentum is building at the Kansas State Capitol.
Recently, the House Committee on Social Services Budget took a critical step toward ending the waitlist crisis by unanimously recommending funding to support the following plan, which I am in full agreement: funding for another 500 Kansans to receive I/DD waiver services, capping the waitlist so it can’t grow over 4,300, and making strides so we can start a new waiver in Kansas called the Community Supports Waiver, which is a small waiver that would allow people like me to receive minimal supports in our communities.
This is an amazing step forward, but we cannot stop here.
We need every state lawmaker to support this request, vote for it and send it to Gov. Laura Kelly’s desk for her signature.
People like me, people who live with intellectual and developmental disabilities, are always told to wait: Wait for services; wait for support; wait for the chance to get to live the life we deserve. Waiting is not a solution.
Every day spent on the waitlist is a day of lost opportunity and unnecessary struggle.
