So, one of the things that makes life with msk a bunch easier is Maryland's autism waiver. I feel so lucky that we have this support that I feel I should explain what the program is about.
The basic concept is that it is cheaper (not to mention more humane) for the state to support caregivers of young people (under 21 years old) with autism than it is to pay for institutionalization. So basically the requirement is a diagnosis of autism and a level of disability that meets someone's definition of severe enough. The whole institutionalization strikes me as theoretical given that institutions are closing while the number of people with autism diagnoses is going up. Another requirement is that the waiver recipient be in public schools or have a non-public placement through the public schools.
So what makes the waiver so great is the support that it provides. Your child gets medicare coverage regardless of your income (the income requirement is what is waived for the waiver). Medicare has great coverage of therapies and medical equipment - strangely much better than the coverage of my work's expensive medical insurance. You also get support beyond the school day and the doctor's office. Therapeutic Integration provides a safe and structured after school program for kids that can't attend a typical after school program. Then there's intensive individual support where a behavioralist works one on one with your child. There's adaptation support to make your house autism-proof; locks alarms and the like. Finally there's respite care to give a break and maintain sanity.
What does the autism waiver mean to our family? This summer it has saved our sanity. Msk needs structure and a lot of attention. Last summer ESY provided this. This summer ESY didn't work out - it just wasn't an appropriate or acceptable placement. If it weren't for the waiver it might have been our best option. With the waiver msk is doing worksheets, playing soccer, getting out in the community, and much more. He's missing out on socializing with neurotypical kids, but that'll come with the school year.
Downsides? The biggest is the limited number of seats and the multi-year waiting list. I could also do without the yearly interview to prove that msk is disabled enough to deserve support. Something about sharing all his challenges and limitations seems like a betrayal, not to mention dwelling in the negative is depressing.
All in all, though, it's a lifesaver.