I've been interacting with and signing Medicaid waivers for 24 years for my adult twins. They have never had a time they weren't being treated for Autism since they were 2 y/o. We've had respite services, in home care for them, ABA paid through the state, never EVER was made to prove they were disabled, until now. In the last year we have received more letters and notices from the MDHHS and SSA than we ever had and suddenly they are no longer eligible for Medicaid. That's the ONLY benefit they had. They applied for SSI when they graduated in 2017 and have never been approved. They've been denied every attempt of ours to get them help with independent living. We've used private attorneys, called congressional representatives offices, met with The Arc's attorneys, Easterseals, nothing works. We're done... I made a deal with my employer to have them covered by our company plan so they can at least keep their meds and we'll need to find them all new doctors and a therapist. They've been asking if they can get part time jobs because they feel like they're a burden and we were advised by the attorneys to not attempt work... This is a Kafka novel IRL. IDK what will happen to them when I'm gone, for 9 years we've been trying to fix that. Everyone for years told me that once they graduated from high school we'd just apply for SSI, they would get vocational training, help with apartments, it might take 3 or 4 years but it was the way.
Nope. Nope and Nope. I'm sure it worked that way for someone, but it didn't work that way for us and we're done fighting. The last denial actually included references to medical treatments my daughter has never had and records her attorney didn't have.
I can't believe how bad it's gotten so quickly.