What is the difference between being the parent of your special needs adult child and being the court appointed guardian of your special needs adult child?  Let’s call your 18 year old disabled adult child, Steve, for purposes of this discussion.

Between birth and 18, you have done everything for Steve.  No one has given you any flack for making decisions for him.  You have attended IEP meetings at school.  You have talked to Steve’s teachers.  You have signed papers on his behalf at the school.

You have applied for and be an active party in all kinds of services for Steve—DDD, etc.  Your involvement in Steve’s daily life has been routinely complimented.

You know everyone at Steve’s doctors’ offices.  You have made all medical decisions for Steve and have been able to talk to anyone you want.

Then, BOOM—Steve turns 18.  Steve hasn’t changed; you haven’t changed; but everything else has changed. Suddenly, legally you are no longer entitled to attend IEP meetings, talk to Steve’s teachers, sign papers, apply for services, or talk to the doctors.  The minute Steve turned 18, he became a legal adult, with all of the privacy laws that protect you as an adult, now available to him.

Now you have to go to court to continue doing what you have always done.  Court ordered guardianship is the only avenue you have.  Although serving as a guardian for Steve is pretty much the same as being Steve’s parent, there are differences.  These differences will probably feel very uncomfortable.

  1. You need to let strangers—a social worker from the court, an attorney appointed for Steve, a judge, into your private life—for a very short time, but nonetheless, with a front row seat.
  2. You need to go to court to get authority to make decisions for Steve.
  3. You need a piece of paper, with a special stamp, (called Letters Appointing You as Guardian), to prove to everyone that you have authority to make decisions for Steve.
  4. You need to submit a report each year on how Steve is doing. A note from a doctor, saying that Steve has been in to a doctor in the past year, must be included.
  5. If you move, you need to let the court know.

You can yell and scream that this is not fair, not right, ridiculous, etc.  However, if you think about it, something very serious is going on here.  When someone becomes an adult, he/she is granted the ability to make decisions on his/her own behalf.  An adult has legal rights.  An adult can vote and drive.  An adult can say someone else is not authorized to make decisions, of any kind, on his or her behalf.  What we all treasure as adults, are also rights that Steve has.

A court ordered guardianship removes all of those trappings of adulthood and leaves Steve totally dependent.  However, in some instances, Steve can retain the right to drive and/or vote.

A judge does not want to take Steve’s rights away from him simply because his parents say that is the right thing to do.  The judge wants to be sure—through the guardianship steps—that this is the right thing to do.

What if you read this and decide that guardianship is not for you?  Unfortunately, you could be bringing on far bigger problems than a guardianship may seem to present.  If Steve is unable to take care of himself and make decisions for himself, no one will be able to do that for him without guardianship.  You would be leaving Steve totally unprotected and vulnerable.

Once you are appointed as guardian for Steve, you should take the next steps to make sure Steve is protected:

  1. Put together a Will that says who should be court appointed guardian for Steve if you become unable to be guardian.
  2. Put together a Trust that will protect Steve’s governmental benefits when you pass away.
  3. Be sure all of your paperwork regarding Steve and his disabilities is in one place so that it is easy for you, a caregiver or a future guardian to have all of Steve’s relevant information readily available.