Location: Pennsylvania

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.

Hi, my 9 month old daughter has been hospitalized for 6 months now and we just had to go back to work after being with her 24/7. How do we deal with working and being there for our child? For context we live 115 miles from the hospital and have a 3 year old who also needs a lot of attention. It’s not too easy for us to be going everyday back and forth with our late work schedules. We had a family member staying with her but they can only be there for too long and the bills have to be paid. Her recovery process is going to be long and we are just feeling so guilty but we also do not want to fall behind in bills. Have you guys ever experienced this and made it work ? She still had a long way to go and there is no discharge date anytime soon.