I recommend becoming self-reliant: not having to rely on an kind of marginal mental health system. Seeing the best private doctor and therapist you can afford.
If your son or daughter or other eligible loved one will have to collect SSI, the rest of his or her life, I recommend you set up for this person a special needs trust. This legal protection in the Estate Law that was created in 1993 allows a person who collects SSI to draw funds from the trust to pay for living expenses.
It boggles my mind that two individuals I know had family that failed to create special needs trusts for these people. How could a mother or father leave their son or daughter out in the cold? Whatever you can afford to fund the special needs trust with is better than not creating a trust. This is one instance where any tax liability the parents will have is well worth the peace of mind that your loved one(s) will not live in poverty, forced to live in a dangerous neighborhood or a group home of poor reputation.
I’m not joking. The first order of business is to create a special needs trust for a loved one. Pronto. Immediately. Having this stash of cash can enable your loved one to see a better doctor and have a better treatment team.
A loved one who is secure financially can then move on to other matters.
Like choosing the color for the new couch he or she needs to buy to replace the old one.