WE HAD EVERY ADVANTAGE. WE STILL HAD TO FIGHT.
After evaluations, including an assessment at Griffin Promise Autism Clinic in Broken Arrow, a suburb outside Tulsa, ᏍᏏᏉᏯ was not diagnosed with autism. He needed services anyway. Speech delay. Developmental delay. Sensory need. A child doesn’t need a label to deserve a real evaluation and the support that comes after it.
We found that support at Siloam Springs Pediatric Therapy, just across the state line in Arkansas. They were a godsend. They still work with my son today. He’s 7.
The therapies worked. ᏍᏏᏉᏯ found his voice.
The services the law already promised him were another fight. His individualized education program was set in a spring meeting. The services in it didn’t start until about 10 weeks into the next school year, and they ran only until state testing in March. Late. Partial. Gone by spring.
I asked the school why. I asked, and asked, and asked. The answers never came. I sat on that school’s board of education, and no one would answer me.
We pulled him out and enrolled him somewhere that worked with its students.
We had a researcher, a working car, insurance and the time to fight, and we still had to fight.
What happens to the family that has none of that?
Across Indian Country, plenty don’t. Some live hours from a specialist. Some lean on one overburdened public system because it’s the only one within reach. Some are working two jobs and caregiving in between. Some have never been told what their child is owed. Others know exactly what their child is owed and have no way to make anyone deliver it.
A father named Rob Gorski is asking that same question out loud. He writes as The Autism Dad, and last week he saw something that turned the question urgent.
On June 18, the Justice Department’s Office of Legal Counsel issued an opinion, written by Principal Deputy Assistant Attorney General Lanora Pettit. It argues that federal disability law never required states to serve disabled people in their own communities instead of institutions. It reinterprets Olmstead v. L.C., the 1999 Supreme Court decision behind what advocates call the integration mandate, the rule that says you serve a person in the most connected setting that fits them. The opinion admits its own reading is “out of step with the common understanding” of that decision in the federal courts. A government lawyer put that in writing.
Nothing has been repealed. No one is being put in an institution because of an opinion. Say that plainly, because it’s true.
Here’s what’s also true. Home and community services run on Medicaid. Oklahoma spent years climbing out of a developmental-disability waitlist that hit 13 years in 2022, with more than 5,000 people waiting, and got it down to about one. Then last July, the One Big Beautiful Bill Act cut federal Medicaid spending by an estimated $911 billion over 10 years, the Congressional Budget Office found, and added work rules to keep coverage. When the federal share shrinks, states cut the optional benefits first, and home and community services are optional. The waitlist Oklahoma just cleared can grow back. Take away the federal rule that forces states to serve people in the community, and a shortfall stops being a problem a state has to fix. It becomes a reason.
For Native families, this isn’t a new fear. It’s an old one with a federal paper trail. The Interior Department’s boarding school investigation documented what happened when the government decided where Native children belonged. Children were separated from family, community and language in the name of their own good. That’s not a comparison I’m inventing. It’s a history the federal government documented itself.
Self-determination doesn’t stop at the tribal border. It applies to disabled people and their families too.
So the question isn’t whether disabled people get institutionalized tomorrow. They don’t, not from this. The question is who decides where a person belongs when the money runs short. The family, or the agency with the budget.
We could afford our answer. Most families can’t. The ones with no car, no second option, no time to burn are exactly the ones a weaker rule reaches first. That’s Gorski’s whole point, and he didn’t stop at making it. He wrote the scripts.
Call your senators, your representative, your governor. The ask is short. Oppose any move to rescind the integration mandate. Protect and fund the home and community services that keep disabled people out of institutions in the first place. Members of Congress can’t write or unwrite a legal opinion, but they can pressure the agencies, fund the services, and make weakening disability protections cost something at the ballot box.
The integration mandate is still on the books. No rescission has been filed. While that’s still the sentence, the Capitol switchboard is 202-224-3121.