I think the main thing for us is that between Medicaid and CLTS, we haven't actually needed to ever withdraw from our ABLE savings to cover any medical costs, equipment, or therapy.

It's nice to have some savings in case we do need them, but it creates an uneasy feeling that we are "trapping" money in an account we may never need. And I'm sure the information exists, but currently we have no idea what would happen to the account if our daughter passed away.