The Number 18

Earlier this week, the son of an awesome area autism advocate I have blogged about before turned 18.

18 is one of the most important numbers in the life of a person with autism in New York State.

When a resident of New York State turns 18, he or she becomes an adult. The law (I'm speaking here as a layperson-I am not a lawyer or have any type of formal legal training) presumes such person is a competent adult fully able to take care of his or her affairs.

The parents lose their ability to advocate for the child/now adult.  The adult must now advocate for his/her own self.

Although this may have changed in recent years, it was my understanding years ago (when I took some training in preparation for one day needing to be responsible for Bil) that, prior to age 18, it was relatively inexpensive to file for guardianship of an individual with an intellectual disability.  After 18, it becomes a lot harder (and more expensive).

Which is where we are with Bil.  Bil, of course, is way past age 18.

Bil's mother authorizes his medical treatment.  She helps him deposit checks and basically tells him what decisions to make.  He sees the world through her eyes (figuratively)  Bil has never had a guardian, a representative payee, or anyone officially appointed to help him with aspects of his life requiring decisions.

At this point in time it is unclear if Bil would need a guardian or exactly what he would need.  However, Bil's former Medicaid Service Coordinator told us that, in her opinion, Bil could never be self-sufficient.  I trust that judgement. She had worked with Bil for years.

So far, Bil's mother has resisted any effort on our part to talk to her about any of those issues.  Which means, should she suddenly become incapacitated or worse, we are not going to have a fun time of it.

On the other hand, I am sure that the autism advocate whose son is now an adult in the eyes of New York State has made such arrangements.  Her son is lucky.

Bil?  I hope we are up to it when the time comes.  We will have a steep learning curve.  I wish I could outline that information from years ago, but it is outdated now.  So much to learn.....