The Beginner's Guide to Guardianship


Let’s face it. This is what keeps us up at night. Nothing has a parent facing their own mortality more than having a child with special needs.

Recently I was asked if I wanted to talk to someone about guardianship. Talk to someone? Hell no! I try to avoid it at all costs. Ostrich. Head in the sand, hands over my ears-la-la-la-la-I-Can’t-Hear-You. If I think about it too much, I get an anxiety attack.

But with each passing year, reality hits me in the face. Or sucker punches me. Depends on the day. But with each passing year, the realization that this is something I must begin thinking about becomes more and more evident. Think about it, I must. And since I had the opportunity to interview this person for this blog, it was actually an easy way to get information and start to develop a plan. I spoke with Professor Scott Johnson of Kaplan University’s Concord Law School. He is currently a Hearing Officer with the New Hampshire Department of Education and was previously in private practice with a focus in administrative law, constitutional law, education law, and health law. Specifically we talked about:

  • Types of guardianship
  • How to assess if guardianship is necessary
  • Special needs trusts
  • Repercussions of not having a guardianship

He also then chatted with me about parents going pro se in Due Process, in case you missed that post. The following is the recap of what we talked about regarding guardianship and adult children with disabilities.

Guardianship and your adult child with special needs

Please check your specific state regulations, as it can vary by state. This is not intended to be legal advice, merely helpful, anecdotal advice to give parents a starting point when thinking about guardianship for their adult child with special needs.

Different models and options: I knew that there were different options and legal proceedings but did not realize that they often follow an LRE model. That is, the courts will seek to place the individuals in the Least Restrictive Environment necessary. Actual guardianship is difficult to get, and it’s a lengthy process. The individual must be “incapacitated” as deemed by a doctor and the court in order for another adult to gain guardianship.

What I didn’t know: The court actually appoints an attorney for the adult child who acts on his or her behalf. Remember that not every adult who is disabled is incapacitated to make decisions. Thus, without this protection, a parent or relative could seek guardianship on an adult with other intentions (getting Social Security money, perhaps) when the person can live independently with supports and can make decisions. You must prove beyond a “reasonable doubt” that this person needs a guardian — that he or she cannot fully understand information and make important decisions. Different states handle this determination differently, depending on the child’s situation. They may appoint a Guardian ad litem, make the adult child with disabilities a ward of the state, etc.

Another thing that was surprising to me: I did not know that I cannot “will” my guardianship to someone else. As my son approaches 18, we will petition the court for guardianship (very likely, anyway). But I can’t live forever, unfortunately, or at least have a guarantee that I will outlive him, if by only a day. I had always {wrongly} assumed that I would take guardianship, and then our will/trust would be set up so that it would go to Brian when the time came. I can’t do that. As an adult, Brian will  have to petition the court to become his brother's guardian, and they both will have to go through the whole process again.

Other options besides guardianship

If your adult child does not need full guardianship, there are other options available. Some of them are:

  • Joint bank accounts — neither can sign a check or make a payment over $100 without two signatures or something like that
  • Power of Attorney — can be medical, educational, etc.
  • Limited conservatorship
  • Health care proxy or agent

There are different levels and many different options, so if your child does not need full guardianship but needs something, there probably are good options available.

What happens if a child does not have a guardian?

If a person is 18 and the parent has not done anything to establish guardianship, then that person is a legal adult. He or she can enter contracts, refuse services, sign leases . . . basically do anything that any other adult can do. In some cases, you may be able to undo what it is that needs to be undone, but it will take time and money. Better to be proactive than reactive.

Where to get more information about guardianship for disabilities.

Contact your state’s Protection and Advocacy group for Disabilities.

So, there you go. All the depressing news that’s fit to print. It should be enough to get your wheels turning and get you started.  No, seriously — those of us that need to do this, we need to know. I know it keeps us up at night, believe me I know! But hopefully getting things in order will give some peace of mind.

Lisa Lightner is a Chester County, PA mom of two. This post was adapted from the blog A Day in Our Shoes, which she co-authors. It provides support, resources and advocacy services for parents of children with special needs.


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