I live in Massachusetts. A bill was passed recently to help address some of this by establishing a tax vehicle for long term care. It also extends ABA services to kids on MassHealth (which an Autism diagnosis qualifies them automatically).
Not sure where you are located. Hopefully legislation like this will be the norm nationwide.
I live in Pennsylvania, and the Autism care is wonderful here (which is why we moved from Canada, which has incredibly bad autism "care"). The support we've received has been great. I believe we also have assistance for long-term care as well. Will have to look into that more carefully.
I used to live in PA, and I think the level of care depends on the county you live in. As you get farther from the Philly suburbs your experience may change. Different counties will have different intermediate units.
Not sure where you are located. Hopefully legislation like this will be the norm nationwide.