Adult Children with Disabilities · Disabilities · Disability Transitioning

Guardianship for Your Disabled Adult Child

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Two disabled adults working through guardianship

What is Right For Your Family?

To guardianship or not to guardianship, that is the question. As the parent of an adult with a disability, this question wasn’t one I had considered until my daughter turned 18. My daughter has a developmental disability and the question of whether I should get guardianship or trusteeship came up very quickly. I point this out because in many cases, this will not be an issue. If your child has a physical disability that doesn’t impair their ability to make decisions, this may not be a question.

But first, I want to point out that this article is not about legalities and does not offer legal advice.  It’s a parent talking about what I have learned about guardianship. Laws vary by geography/Country/State/Province so make sure you check with a lawyer.

What is Guardianship?

Guardianship is defined by Duhaime’s Law Dictionary as “An individual who, by legal appointment or by effect of a written law, is given custody of both the property and the person of one who is unable to manage their own affairs, such as a child or mentally-disabled person.”

This sounds pretty straight forward, right? After all, if someone can’t take care of their life, then someone has to step in and do it. But wait. Are they able to make any of their own decisions? Do they have opinions and feelings on certain things? What are their thoughts about losing their right to decide things for themselves?

“Guardianship should only be used as a last resort because it is the most restrictive form of substitute decision-making.” – Pennsylvania Coalition Against Rape

Guardianship as Protection

Having guardianship of your disabled adult child can offer them some protection. The protection can come in the form of both physical and financial.

If your child has been taken advantage of by someone, as their guardian, you have say on whether they associate with them. Or, if that isn’t included in your guardianship order, you can certainly make it more difficult. If your child has the legal right to make their own decisions for themselves, you may not have that ability.

When it comes to finances, the depressing fact is that statistics show 31.5% of those with a disability have experienced financial abuse. Financial abuse can look like someone befriending a person with a disability and having them buy them meals and gifts. It can mean someone helping a person with a disability obtain a credit card and then using it themselves.

A guardianship can also protect your child if there are medical decisions that need to be made. If your child is of age, they can make their own decisions even if you don’t agree or feel it is in their best interest.

Drawbacks of Guardianship

The biggest drawback to obtaining legal guardianship of your adult child is that it takes away their self-determination. Meaning, you take away their ability to make their own decisions and determine their own destiny.

If your child understands that their right to govern their own life has been taken away, it could have a profound effect on their sense of self. Where I live, part of the process for obtaining guardianship is an interview with your child. During this interview they question the person to determine how much they understand and whether they have any reason it shouldn’t happen. This interview is done one-on-one without the parent in the room.

It is important to get legal advice to find out how a guardianship order may affect your adult child. The differences can vary from country to country and often even within the same country. For example, in the state of New York in the United States, if you have been deemed incapable of making decisions on your own life (you have a guardian) then you can no longer vote.

Some laws allow for different levels of guardianship. That means that a guardian may be responsible for making financial decisions, but not deciding on friends. They may be able to decide where the person will live, but not who they will live with.

Alternatives to Guardianship

If you weigh the pros and cons and decide you aren’t comfortable with guardianship, there are other things you can do.  Some of the ways you can maintain some control and protection are:

  • Have a joint bank account so you can help them pay bills
  • Help them get an enduring power of attorney or personal directive so you are responsible for medical decisions.
  • Establishing a financial trust so you can plan for their future.
  • If they are living on their own, set up the lease in your name.

Your Family, Your Choice

I don’t believe there is any right or wrong decision when it comes to whether you obtain guardianship of your adult child. It’s a decision that your family, including your adult child who has a disability, must make. Make sure you consult with a lawyer, so you understand the ramifications of whatever decision you make.

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