Supported Decision-Making and Helping Your Child Make Decisions

Children with disabilities or special health care needs often find other people making choices for them:  where they’ll live, what therapies they’ll get, and even what they’ll eat. But being able to make even the smallest of these choices for themselves (which we sometimes call self-determination) helps your child start down the road to independence.

You can support your child in making decisions throughout their lives by helping them get information about a situation and understand more about the choices they could make. If your adult child still needs help with their choices, you can also make a clear, written supported decision-making agreement with them. In 2015, Texas became the first state to recognize a supported decision-making agreement as a legal document for an adult with disabilities or special health care needs.

Read on to learn more about legal supported decision-making agreements for adult children and for tips on how you can support your child in making decisions at any age, with or without a legal agreement.

Supported Decision-Making Agreements

At age 18, in the eyes of the law, your now-adult child is completely responsible for their own choices. The doctors, therapists, and school staff who used to include you in every visit or meeting might not be able to talk to you without your child’s permission.

If your adult child is going to need help in certain areas of their life, their school might start talking to you about guardianship or other legal options that you can use to support your child. If you are going to apply for guardianship, you will need to show a judge that you have looked at or tried these tools and that they won’t work for your child.

A supported decision-making agreement is a legal tool for children age 18 or older with disabilities or special health care needs. It’s a document that says you will help your adult child with certain decisions. This agreement is useful when you want to talk to their school, bank, doctors, or other people in your child’s life about a decision or choice.

Signing a supported decision-making agreement doesn’t take a lawyer or a court visit. You can download a free copy of a blank supported decision-making agreement from the Arc of Texas.  

To set up that agreement, your adult child decides which choices they want to get help with, like:

• Their Admissions, Dismissal and Review (ARD) meetings (if they have them) and getting the services they might want or need.
• If they want to go to college or a job training program after high school.
• The kind of job they want to have, where they will work, and how they will manage their paycheck or any problems at work.
• Where they will live. They might live with you, on their own, or with roommates. You might help them talk to a landlord or find housing.
• Self-care decisions –for example, getting exercise, diet, picking out clothes, and others.
• Managing their money.
• Going to doctor’s appointments, managing their physical or mental health, or choosing a new treatment.

The National Center for Supported Decision Making has a worksheet that you and your child can use to pick out the areas where they want your help.

Once you’ve agreed on these areas, you can fill out the actual supported decision-making agreement. Then, you and your adult child sign the agreement in front of 2 other people or in front of a notary public (a person who witnesses legal documents) and those people sign it too.

You can give a copy of the agreement to the people (and organizations) it will affect: your child’s bank, school, doctors, health insurance representative, or anyone else who needs to know you are helping your child with these decisions. Either you or your child can end that agreement at any time by tearing it up and letting the people who got copies of the agreement know that it has ended.

If your adult child wants your help with health care or school, they might also need to sign release forms. You can download a medical release form or get one from the doctor or therapist. You can get a school release form from your child’s school counselor.

How to Support Your Child in Making Decisions

Even without a legal agreement, you can use a supported decision-making approach in daily life to help your child make decisions. And if you start including your child in making decisions about their life when they’re younger, it might be easier to keep doing this when they’re an adult.

When you have a big decision to make in your life, you probably don’t do it all by yourself. Most likely, you call a friend, talk to your family, or ask someone else you trust for their opinion. And then you make your choice.

There are 3 parts of a supported decision-making process:

• Help your child get the information they need to make a choice.
• Help your child think through all the parts of the choice they’re making and its impact.
• Help them talk to or work with the people who need to know what choice they’ve made.

When you support your child, you don’t make the decisions for them. You help them make decisions for themselves.

For example, let’s say that your child wants to be in an art class after school and also has a chance to do a dance class at the exact same time.

By using supported decision-making, you help your child gather information. How much will each class cost? What time is each class? Is there a way to do both? How will they get to and from the classes? Which of their friends might be doing the art or dance class too?

Then, you help them think it through. What do they like about the art class? What’s exciting about the dance class? Will one of classes make them too busy or tired to get all of their other responsibilities done, like homework? How will they (or you) pay for the classes? What do they think they’ll learn or get out of each classes?

Then, your child makes the final decision.

Afterwards, they might need help actually starting the class or telling their friends about it. You can show them how to fill out the application (online or paper) or how to make a phone call to sign up for their class. If they know a friend is in the class, you can help them remember to tell their friend that they will be in the class too. Depending on your child’s age and abilities, you might need to do some of these things.

You can practice this with your child when they’re little and as they grow up. Our page on about building independence has more tips and ideas to try.

Other Ways to Support Decision-Making

Making decisions isn’t always easy. Here are some resources that might help both you and your child when important decisions come up:

• Your child can have a person-centered plan.
• A transition plan is a way to help you and your child get ready for the choices that come as they reach adulthood.
• Think about setting up a personal network of other people who will commit to making sure your child is well cared-for.
• You can connect with other parents who are also trying to help their children make good decisions as they grow up.

Every child has different needs, and there are different ways you can work with your child to make important life decisions and even everyday decisions. Just because your child turns 18 years old doesn’t mean you stop being their parent. You’ll know what kind of support your child needs.

Using supported decision-making and a setting up a legal supported decision-making agreement can make it easier for you to keep guiding them even as they transition into the world of adulthood.