Understanding Self-Determination &

Supported Decision-Making (SDM)

What Is Self-Determination?

Self-determination means that a person — including those with disabilities — is in charge of their own life. They:

Set personal goals
Make their own choices
Speak up for themselves
Build their future based on their strengths and interests

For children and youth with disabilities, it’s especially important to start learning these skills early, so they grow up with confidence, independence, and a clear voice in decisions.

How Can Parents Help?

You play a key role in helping your child build self-determination. Here's how:

Listen to what they want
Let them make choices (big or small)
Include them in school or transition planning
Support self-advocacy (speaking up, asking questions)
Help them learn from mistakes — failure is part of growth!

What Is Supported Decision-Making (SDM)?

Supported Decision-Making is a way to help people with disabilities make their own decisions — with help. Instead of someone else making all the choices, trusted supporters help them understand options, weigh risks, and make informed choices.

“It’s what we all do — ask friends, family, or experts before big decisions. SDM just provides more structured support.”

Why SDM Matters

Historically, people with disabilities had little or no say in their lives. It helps people stay in control of their life while getting help when needed.

SDM changes that by:

Supporting independence
Encouraging self-expression
Helping people understand and manage risks
Improving behavior and emotional well-being
Supporting community living, work, and relationships

What Is Substitute Decision-Making?

When someone can't understand decisions — even with support — another person may make decisions for them. This is called Substitute Decision-Making, often done by:

A guardian
A power of attorney

⚠️ This should be a last resort. Always try less restrictive supports first.

How Does SDM Work?

Start with simple, real-life conversations:

What are your child’s goals?
What decisions do they already make?
Where do they need support?

You can create a Supported Decision-Making Agreement that lists:

Who will support them
In what areas (health, money, school, etc.)
How they want to be supported

Click here to download a free SDM checklist for employment.

Click here to download a self-advocacy checklist.

Click here to download a user's guide for Supported Decision Making.
Click here for decision-making tools at supportmydecision.org

Areas to Think About

Ask yourself:

Can they understand the information?
Do they need help with research?
Can they weigh the consequences of a decision?

Support can come from:

Family or friends
Teachers, therapists, or counselors
Community members or professionals

It’s about building a team around your child based on their needs.

⚠️ Challenges in Pennsylvania (PA)

PA doesn’t formally recognize SDM by law (yet)
Support networks can change or break down
Some individuals may resist help — leading to neglect or risk
There’s limited guidance or models in place

If a person is at serious risk (neglect, abuse, exploitation), call: 800-490-8505 (Adult Protective Services)

Most Important Skill: Self-Advocacy

All people — verbal or non-verbal — need a way to communicate wants and needs. This could be:

Talking
Typing
Using a device
Writing or drawing

Start early. Make it an IEP goal. Make it a therapeutic goal. Keep practicing. Let your child’s voice be heard.

Build a Supportive Community

Ask yourself:

Who knows my child well?
Who wants to help?
Who has skills in areas like finances, health, or education?

This might include:

Family members
Teachers or aides
Therapists
Neighbors or friends
Support staff or mentors

Remember: Every child is different. Every support plan will look different, too.

If There’s No Support...

Without self-advocacy or support, risks may increase. In serious cases, Adult Protective Services (APS) or Older Adult Protective Services (OAPSA) may get involved to protect the person.