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 disabilities and thinking of that developmentally disabled adult living on their own.

This post is based on an interview I did with a lawyer about legal guardianship for adults with disabilities. This is for all disabilities that would make a person eligible for guardianship (more on that in a bit).

Guardianship of Developmentally Disabled Adults

Does your adult child wander? Then you need to be their legal guardian. Because guess what? If a regular adult (who no one has guardianship over) wanders away from your home, no big deal!

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Adults are allowed to wander the planet at their will, and police/rescue do not have a responsibility to go look for him/her. If you have guardianship, they do.

That is just one of the many surprising things I learned when I interviewed an attorney about legal guardianship for disabled adults.

a dad and his disabled child making decisions

Guardianship Lawyer

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 on administrative law, constitutional law, education law, and health law.

The following is the recap of what we discussed regarding guardianship and adult children with disabilities.

  • Types of guardianship
  • How to assess if guardianship is necessary
  • Special needs trusts
  • Repercussions of not being your child’s legal guardian

Please check your specific state regulations, as they 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.

For me, it comes down to this question: Is my child (even though they’ll be an adult) able to protect himself? Right now, the answer to that is a hard NO.

Every couple of years, we hear some horror story out of Philly about some criminals who chained some disabled people in their basements and were keeping their money, feeding them just the bare minimum to keep them alive.

A situation like that could have been prevented if the person had a competent, caring, responsible guardian.

Guardianship of Disabled Adults

Guardianship of disabled adults is a deprivation of individual rights and should be sought only as a last resort.

If an individual has a disability, yet still maintains the capacity to execute powers of attorney, guardianship is not necessary.

When appropriate, however, guardianship provides two crucial layers of protection (the guardian and the court), for those who have lost the ability to protect themselves. If you are planning on setting up a Special Needs Trust, or even investments like ETFs, you need to also discuss the various models for supported decision making.

Explore the different models and options: I knew there were other options and legal proceedings but did not realize that they follow an LRE model. That is, the courts will seek to place the individuals in the Least Restrictive Environment necessary.

Actual guardianship is challenging 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 their 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 of an adult with other intentions (getting their Social Security Disability Income, perhaps) when the person can live independently with support and can make decisions. Self-determination is always the goal!

You must prove beyond a “reasonable doubt” that this person needs a plenary guardian that they cannot fully understand information and make important decisions. Different states handle this differently depending on the child’s situation–they may appoint a GAL, make them a ward of the state, etc.

Guardianship is NOT a part of the IEP Transition

I’m adding this because it is a question that I get a couple of times each year. If your child is in IEP transition, obtaining guardianship is not part of the IEP process.

Your school or the added IEP team members (related agencies) that attend during transition may be able to steer you toward the proper agencies. But, they do not initiate nor do any part of the guardianship process. They also do not pay for it, nor should there be an expectation that they will.

I also hear from a few parents each year who state that they cannot afford an attorney for this process. I am sorry about that–I don’t know what else to say. The only tip I can offer is to search online for agencies that do this at low/no cost.

But again, the school district does not pay for this as a part of transition.

Supported Decision Making

For most disabled adults, you want to participate in Supported Decision Making. That is, the disabled person making their decisions, with support from parents and loved ones.

Very few disabled adults need full guardianship. You want to explore all the levels and options, and think of it like an ala carte menu–choose what you like.

Such as supported decision-making, medical POA, banking POA, and so on.

Does Guardianship transfer?

No, it does not.

Develop a long-term plan. Here is another thing that was surprising to me. I did not know I cannot “will” my guardianship to someone else. As my son approaches 18, we will petition the court for guardianship (very likely, anyway).

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 then have to petition the court to become his guardian and they both will have to go through the whole process again.

It’s also important to note that yes, you can change this. If your child needs more support at age 18, but then you can fade it at 25 or 30 or 35, you can do that.

The supported decision-making model is one that all families should consider.

What is a Plenary Guardian?

A plenary guardian is one who has absolute power in decision-making. It is the most restrictive environment for an adult. If you’ve followed the recent news stories about Britney Spears, you like have witnessed how restrictive it can be.

Any person or agency may serve as a plenary guardian who:

  • Is at least 18 years
  • Is a resident of the United States
  • Is not of unsound mind
  • Is not under a finding of disability themselves (IE, if someone has guardianship over them, they cannot be a guardian)
  • This party varies by State, which is why it’s important to speak with an attorney: Has not been convicted of a felony involving harm or threat to an elderly person or person with a disability, including a felony sexual offense. The court may appoint an individual who has been convicted of a felony other than those noted above, so long as the court finds it to be in the best interest of the ward and there is evidence of rehabilitation.
  • Any public agency or not-for-profit corporation found capable by the court of providing the care and/or support the ward requires (very common for groups like the Arc to do this)
  • Any corporation qualified to accept and execute trusts may serve as guardian of the estate.

There are other options besides legal guardianship for adults with disabilities. If your adult child does not need full guardianship, these are some of the other options.

  • Joint bank accounts (neither can sign a check or make a payment over $100 without 2 signatures or something like that)
  • Power of Attorney-can be medical, educational, etc.
  • Limited conservatorship
  • Health care proxy or agent
  • Supported Decision Making

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.

disabled adult carrying vegetables

Again, remember that you will have to follow a Least Restrictive model and prove it as such.

Legal Guardianship for Adults with Mental Illness

If a person is 18, and the parent has not done anything as far as guardianship, then that person is a legal adult.

They can enter contracts, refuse services, and sign leases.

I want my son to have access to as many rights and freedoms as he can enjoy. But I also need him to have as many legal protections as he is entitled to.

Basically, they can do anything that any other adult can do. They can even be drafted into the service!

It is also worth noting, in particular, if you have an adult child with mental illness, if you do not have any rights, then HIPAA will apply. I recently had a friend whose adult son was put on a 72-hour hold related to his mental illness.

Because Mom did not have any type of Power of Attorney or anything, the treatment facility was prohibited from sharing any medical information with her. Yes, they got it resolved but it caused a tremendous amount of stress the first few days.

This includes arrests, as was the case with my friend’s son. In some cases, you may be able to undo mistakes, but it will take time and money.

Can Disabled Adults with Guardianship be Arrested?

The short answer is yes. Getting guardianship for adults with disabilities does not protect them from being arrested. After all, they may still commit crimes.

Talk with an attorney who specializes in this. Some developmentally disabled folks do have difficulty distinguishing between right and wrong, and you want to protect your son/daughter as best you can.

Also, many of our kids/teens/adults exhibit behaviors that are not dangerous, but when misunderstood, are seen as peculiar and threatening by others who are not familiar with disabilities.

As the statistics stand right now, over half of all people killed by police have a disability of some kind. And it’s not just shootings and mental illness. You may have heard of the incidents of young men with Down Syndrome being suffocated while being restrained by police.

Watch What is Happening with Britney

I don’t want to speak out of my limits here, but it might be of particular interest to watch what is happening with Britney Spears. She had a very well-known, well-publicized mental health crisis a few years ago. As a result of that, her dad became her Conservator.

Actually, the term Conservator and Guardian are the same, legally. I guess for whatever reason, the media like “conservator” for her better than a guardian. And, we don’t know the details of her guardianship.

We do know that it appears that she is fighting it, as a Ward is always entitled to do.

What can a Legal Guardian do?

Once guardianship is obtained, a Guardian/Ward relationship is established. Yes, this may also be a brother/sister relationship or parent/child. But in legal terms, you will also now be Guardian/Ward.

Examples of the limitations of guardianship include, but are not limited to:

  • No authority for permanent placement in a care facility without court approval;
  • The Ward cannot be forcibly medicated, except by order of the court;
  • Ward cannot be kept isolated from any person, except at their request, or by order of the court for the ward’s safety;
  • A Ward cannot be prevented from requesting a hearing to seek restoration of rights (as Britney Spears is doing right now)

Once your family has decided upon the option for you, it’s time to get started. Your county and state agencies will let you know how much before the 18th birthday you can start doing this.

  • Have a Vision Statement or Mission Statement for your child. This is the most important. Your child needs to guide you in developing their future. Not the other way around. Use that link to get the free workbook and do the activity. Even if your child is past IEP age, they should have a future plan.
  • Contact your State or County Office for Disabilities. Many of them have packets already made up that they can send to you. Or, direct you to the website to begin the process.
  • Find a Guardianship Attorney. The court is going to appoint an attorney for your child to protect their interests. (as it should be!) You should find one because it can make the process go smoother and quicker if you have a knowledgeable person helping you.
  • Start Working on the Legal Guardianship paperwork. This is a lengthy and cumbersome process. Again, as it should be! No adult should be able to just claim guardianship over another without a process. Be patient, keep good records.
  • Complete your Will. As stated above, you cannot will guardianship to another person. So once I have it, I cannot will it to my other child. However, you can still make your wishes known, should that other person run into difficulties when (gulp!) we pass away.

More Information about Legal Guardianship for Disabled Adults

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

So, there you go. All the news that’s fit to print. It should be enough to get your wheels turning and get you started. Hopefully getting things in order will give me some peace of mind.

Please check your specific state regulations, as they 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 legal guardianship for their developmentally disabled adult.

If you see an error, please let me know. I did this interview over 3 weeks ago and having trouble deciphering some of my notes!

After our conversation about guardianship, we talked about parents going pro se in Due Process.

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