The 18th Birthday: Preparing for Guardianship

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When a child receives a diagnosis of autism at age two or three, parents may begin to worry about the future and whether independence is a possibility.  If a child has medical issues underlying their autism diagnosis, the likelihood is that parents have spent years and perhaps tens or hundreds of thousands of dollars seeking care not covered by medical insurance hoping that they will improve and achieve full independence.  

But, what if that hasn't happened yet?

Legally, when a child reaches the age of 18, they are no longer a minor in the eyes of the court and it is important for parents to take steps to protect themselves and their child.  Guardianship is a legal action taken by a court in which the power to make key decisions for an individual or "ward"  is assigned to another party.  Guardianship is not an automatic process for a child with a disability.  Parents must formally request it and have it legally granted. A child who is not able to drive, handle money responsibly, or make sound educational or medical decisions ought to have a legal guardian.

Advance Planning:

  • Do your research early, at a minimum of 4-6 months in advance of the 18th birthday.  
  • Talk to other people in your local support groups or Special Olympics group who have gone through the process already. They may have important recommendations of who to hire and who to avoid.
  • Plan to spend some money.  In Arizona, going through the guardianship process with a reputable attorney costs approximately $4,000, including all of the court filing fees.  You get what you pay for!  An excellent family attorney with experience in special needs planning, trusts and estate law can make the process much easier and reduce stress.  Although you can file court documents yourself, you should consider seeking some advice or attending free seminars prior to doing so to avoid any unanticipated consequences.  This is not a one time event. You will have to file a court report yearly, "an update", or suffer legal action against you by the court.  A good attorney is likely to include support through at least for the first year's report, just before age 19.
  • You and your spouse may have to take one or more short, free online courses on guardianship and conservatorship and produce a certificate of completion.
  • Talk to your child and prepare them once the event is near.  
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The Process:

  • Documents will be prepared by you or your attorney.  A statement from the child's physician will be required.  Prepare yourself for the words, "mentally incapacitated adult".  The physician will state the individual's limitations, for example, that they are not able to drive presently or that they may be able to in the future.  The doctor may also include statements in support of the parents' being excellent advocates and caregivers and how long he or she has known the family.
  • Your son or daughter will be served papers.  Prepare them in advance that someone will ring the door bell and hand them papers.
  • A court-appointed investigator will come to the home to speak to you and your child.  They will be asking questions, like, "Do you like living here?", "Where else have you lived?", "Are you moving soon?" or, "Can you show me where you sleep?"  Although shocking, the sad reality is that these investigators have seen it all and are there to protect the child's welfare. 
  • A court-appointed attorney will come to the home to meet their client (your child).  You have representation and will sit on one side of the courtroom, and your child will sit on the other side with his or her court-appointed attorney.  Most court-appointed attorneys want to see families stay together and will delight in seeing their client in the loving, supportive environment of your home.
  • One parent will have to speak to the judge and testify that their son or daughter has autism and is incapacitated.  Decide in advance who will be the one to speak.  Yes, it is gut-wrenching to say this with your child sitting a few feet away, but you must.  The other parent must then testify that they are in agreement with what the other has said.  
  • Consider having your other children or extended family members present to show their support.

Common misconceptions:

  • Guardianship strips all of an individual's rights away.  Not true.  The judge will give weight to the doctor's recommendation to revoke driving privileges and also must heed state laws that prohibit purchase of firearms by an adult who is under guardianship.  The right to vote is retained.  No other rights are curtailed unless the judge specifically orders so.  If you are concerned about any other rights, discuss them in advance with your attorney.
  • The 18th birthday is a milestone after which improvement or recovery becomes impossible.  Not true!  Improvement and recovery is possible at any age.  Don't let this process become a mental obstacle for you.  Regard it as something you have to do and then celebrate the birthday!  Let it be an occasion of joy. And then continue your hard work to help your child reach his maximum potential.
  • Guardianship is not the same as conservatorship.  Guardianship is appointed to have control of the person (ward).  Conservatorship deals with a person's financial decisions.  Consult your attorney in advance on how to handle money in your child's name that may consist of bank accounts, stocks or other investments that have been made in your child's name over the years by you or your child's grandparents.  This includes your child's name in a will.  You may be advised to remove their name from everything.  After the guardianship proceedings are finished, consider creating a will and special needs trust if you have not done so already.