If you’ve been following my series about adulthood and disability, you’ve probably heard me talk about Supported Decision-Making, or SDM.
And if you’re a parent who has spent years making appointments, answering questions, attending IEP meetings, managing paperwork, and helping your child navigate just about everything…
you might be wondering:
“Okay, but what does supported decision-making actually look like in real life?”
That’s what we’re getting into today.
Because SDM isn’t just a nice idea.
It can be a very practical way to help an adult with a disability make decisions while keeping their legal right to make those decisions.
The Administration for Community Living describes supported decision-making as an alternative to guardianship in which people retain their right to make decisions with support from trusted people they choose. Michigan’s Department of Health and Human Services similarly describes SDM as an approach that helps people with intellectual and developmental disabilities make their own life decisions while maintaining control of their rights.
And that distinction is huge.
First: What Exactly Is Supported Decision-Making?
Supported Decision-Making is a process where an adult chooses trusted people to help them:
- Understand information
- Identify their options
- Think through risks and consequences
- Ask questions
- Communicate their decisions
- Follow through with decisions they have made
The adult remains the decision-maker.
That’s the heart of SDM.
The supporter isn’t supposed to quietly take over and say:
“Well, I know what’s best, so we’re doing this.”
That’s not supported decision-making.
That’s somebody else making the decision.
The purpose of SDM is to provide the assistance the person needs while keeping decision-making control with that person.
SDM Isn’t Just for People Who Can Do Everything Independently
This is an important point.
Sometimes people hear “self-determination” or “independence” and imagine someone who doesn’t need help.
That’s not what we’re talking about.
Most of us use other people to make decisions.
I might ask my friend:
“Does this sound like a good job offer?”
I might ask my doctor:
“Can you explain these treatment options?”
I might ask my accountant:
“What does this tax form mean?”
I might ask someone who has bought a house:
“What should I look for before I sign this?”
Getting help doesn’t mean I gave up my right to make the decision.
Supported Decision-Making recognizes that people with disabilities can need support too.
The amount and type of support can be different from person to person—and can even be different depending on the decision.
What SDM Is NOT
Let’s clear up a few things.
SDM is not guardianship.
With guardianship, a court may give a guardian authority to make decisions on behalf of an adult, depending on the type and scope of guardianship.
With SDM, the adult remains the decision-maker.
SDM is not someone telling the person what to do.
A supporter can explain.
A supporter can offer information.
A supporter can help compare options.
A supporter can point out potential consequences.
But the supporter shouldn’t turn:
“Here are your choices.”
into:
“Here’s what you’re doing.”
SDM is not just Mom making every decision.
This one can be especially difficult for parents.
We’ve been doing the decision-making thing for a very long time.
And sometimes we really are good at it.
But adulthood changes the role.
SDM asks us to move from:
“I decide for you.”
toward:
“I’ll help you make your decision.”
That doesn’t mean parents become unimportant.
Quite the opposite.
Parents may be incredibly important supporters.
But the adult’s wishes remain at the center.
What Does an SDM Supporter Actually Do?
Let’s make this practical.
Imagine your adult child has a doctor’s appointment.
A supporter might:
- Help prepare questions before the appointment
- Help organize medical information
- Take notes
- Ask the doctor to explain something differently
- Help the person compare treatment options
- Remind the person what was discussed
- Help communicate the person’s decision
But the supporter isn’t automatically saying:
“Doctor, here’s what we’re doing.”
Instead, they might say:
“Can you explain those two options again so we can make sure we understand them?”
Or:
“Would you like me to tell the doctor what you’ve been experiencing?”
Or:
“Which option do you feel more comfortable with?”
That is support.
Where Can Supported Decision-Making Be Used?
Pretty much anywhere decisions happen.
And that’s…well…
everywhere.
The Administration for Community Living notes that SDM can be customized for areas such as healthcare, finances, housing, and transportation.
Let’s look at some everyday examples.
1. Healthcare
Healthcare is one of the easiest places to see how SDM can work.
Your adult child might understand their own health very well but have difficulty understanding complicated medical language.
A supporter could:
- Help prepare questions
- Take notes
- Ask for clarification
- Help explain information afterward
- Help compare treatment options
- Help communicate the person’s preferences
The important part is that the person remains involved in the decision.
For example:
Doctor: “We have two treatment options.”
Supporter: “Let’s make sure we understand both. Can you explain the difference?”
Then:
Supporter: “Which one sounds better to you?”
The supporter isn’t deciding.
They’re helping the person get enough information to decide.
Of course, healthcare can involve separate legal documents, such as a patient advocate designation or healthcare power of attorney. SDM doesn’t automatically replace those tools.
Instead, SDM can work alongside them when appropriate.
2. Finances and Budgeting
Money can be complicated.
Even people who are perfectly capable of making their own decisions can struggle with budgeting.
A supporter might help an adult:
- Create a monthly budget
- Understand bills
- Compare prices
- Understand bank statements
- Set up automatic payments
- Think through a major purchase
- Identify potential scams
- Ask questions at the bank
The adult can still control their money and make their own decisions.
The supporter might say:
“You have $500 left after your regular bills. You want to spend $400 on this. What will that leave you for the rest of the month?”
That’s very different from:
“I’m taking your money away because you can’t manage it.”
The first approach teaches and supports decision-making.
The second transfers control.
And sometimes additional legal or financial tools may be appropriate. SDM doesn’t mean you can’t use other supports.
It means you should look at what support is actually needed.
3. Housing and Independent Living
Let’s say your adult child wants to move into an apartment.
That is a giant decision.
A supporter could help them:
- Compare apartments
- Review the lease
- Make a list of questions
- Understand rent and deposits
- Compare transportation options
- Think about safety
- Plan grocery shopping
- Organize utilities
- Create a daily routine
- Understand service agreements
But again:
The adult makes the choice.
Maybe they choose the apartment you wouldn’t have chosen.
Maybe the kitchen is tiny.
Maybe you hate the carpet.
Maybe you would have picked something completely different.
But if they understand the decision and choose it…
that’s part of adulthood.
4. Education and Vocational Training
SDM can also be useful when someone is deciding what they want to do after high school.
Maybe they are considering:
- College
- Trade school
- Vocational training
- A certificate program
- Supported employment
- Competitive employment
- Volunteer work
- A day program
- A combination of several things
A supporter can help research options, explain requirements, compare costs, visit programs, and help the person ask questions.
But the question should ultimately be:
“What do you want your life to look like?”
not:
“Which program makes the most sense to everybody else?”
5. Employment
Getting a job comes with a ridiculous number of decisions.
There is:
- The job itself
- Schedule
- Transportation
- Pay
- Benefits
- Job duties
- Workplace expectations
- Communication
- Accommodations
- Employment paperwork
A supporter could help someone understand an employment offer, prepare for an interview, think through transportation, or understand workplace policies.
They aren’t necessarily the employer.
They aren’t necessarily the employee.
They’re the support person helping the employee understand and communicate their choices.
Who Can Be a Supporter?
This is one of the things I really like about SDM.
There doesn’t have to be one person who knows everything.
A supporter could be:
- A parent
- Sibling
- Friend
- Relative
- Trusted professional
- Advocate
- Service provider
- Another trusted person chosen by the adult
The important thing is trust.
The adult should be able to identify people who will respect their wishes and support their decision-making rather than simply taking over.
And you don’t necessarily need one supporter for everything.
Maybe Mom helps with medical appointments.
A sibling helps with budgeting.
A friend helps with transportation and social decisions.
A vocational professional helps with employment.
A trusted advisor helps with housing.
That’s a circle of support.
Michigan’s Supported Decision-Making resources specifically discuss circles of support and person-centered planning as ways to strengthen the supports around an individual while preserving autonomy.
So What Is an SDM Agreement?
Here’s where the word agreement comes in.
Supported decision-making doesn’t always have to be a formal legal document.
It can be informal.
But it can also be formalized in writing.
A formal SDM agreement can identify:
- Who the supporters are
- What areas they will help with
- What kind of assistance they provide
- What information they may access
- What information remains private
- What the adult’s rights are
- How the arrangement can be changed or ended
The Administration for Community Living specifically describes formal SDM agreements as tools for clarifying responsibilities, protecting privacy, and helping others understand that a formal support relationship exists.
And Michigan provides sample SDM agreements and brainstorming tools through its Supported Decision-Making Toolkit.
Step One: Start With the Person
This may sound obvious.
But it is probably the most important step.
Don’t start with:
“What do I want to control?”
Start with:
“What support do I want?”
If the adult can participate in this conversation, involve them.
Ask:
What decisions are easy for you?
What decisions are difficult?
Who do you trust?
How do you like information explained?
When do you want help?
When do you want privacy?
What do you want your supporters to do?
What do you NOT want them to do?
That’s the foundation.
Step Two: Identify the Supporters
Make a list.
Who does this person trust?
Maybe:
Mom
Medical decisions.
Brother
Money and budgeting.
Friend
Transportation and social activities.
Employment specialist
Work-related decisions.
There isn’t necessarily a perfect number.
And the people don’t have to be related.
Step Three: Define the Boundaries
This is where an SDM agreement can become really useful.
Don’t just write:
“Mom helps with healthcare.”
That’s pretty vague.
What does “help” mean?
Maybe:
- Help schedule appointments
- Help prepare questions
- Attend appointments when invited
- Take notes
- Help explain medical information afterward
And what doesn’t Mom do?
Maybe:
- Make the decision without the adult
- Access information the adult has not authorized
- Speak for the adult when the adult wants to speak
The clearer the boundaries, the better.
Step Four: Be Specific About Information
Privacy matters.
Your adult child may want you to know everything about their healthcare.
Or they may want you to know some things.
Or they may want to handle certain issues privately.
That’s okay.
A formal SDM agreement can help clarify what information a supporter can access and what remains private.
And remember:
An SDM agreement isn’t automatically the same thing as a HIPAA authorization, power of attorney, or patient advocate designation.
Depending on the situation, you may need additional documents.
Step Five: Check Your State’s Rules
And this is where I need to put on my “please don’t use the internet as your attorney” hat.
SDM is used throughout the United States, but laws regarding formal agreements and their recognition can differ by state.
Some states have specific statutes addressing SDM agreements.
Others may rely more on general legal documents and existing law.
So before assuming:
“I downloaded an SDM form, therefore every doctor, bank, employer, and government agency has to accept it,”
check the rules where you live.
If you’re in Michigan, the Michigan Department of Health and Human Services has a Supported Decision-Making Toolkit with sample agreements and other resources.
Step Six: Share the Plan
Once you’ve created your support plan, make sure the people who need to understand it actually know about it.
Depending on the situation, that might include:
- Doctors
- Therapists
- Banks
- Employers
- Vocational providers
- Service coordinators
- Housing providers
- Schools or training programs
- Other agencies
The purpose isn’t to announce:
“Here is the person who is in charge of me.”
It’s to communicate:
“Here is how I want to be supported.”
That distinction matters.
And Here’s Something Else: SDM Can Change
This isn’t necessarily a document you create at 18 and stick in a drawer until everyone is 80.
People learn.
People grow.
People lose skills.
People gain skills.
Circumstances change.
Someone may need significant support with finances at 20 and less support at 30.
Someone might need a lot of help with healthcare but be completely independent with employment decisions.
SDM can be adapted to the person’s changing needs.
The support should fit the person.
Not the other way around.
What If My Adult Child Makes a Decision I Don’t Like?
Okay.
This is the hard part.
Because sometimes your adult child is going to make a decision you wouldn’t make.
That’s true for every parent.
My kids have made decisions I wouldn’t make.
I have made decisions my parents wouldn’t make.
That’s adulthood.
The difference with SDM is that the supporter is not supposed to become the substitute decision-maker simply because they disagree.
The supporter can say:
“Have you thought about this?”
“Do you understand what could happen?”
“Would you like me to help you compare these options?”
But the person’s preferences remain central.
That is what makes SDM different from simply having someone else make the decision.
The Goal Isn’t Independence Without Help
I think this is one of the biggest misconceptions about disability and adulthood.
The goal isn’t:
“Do everything yourself.”
The goal is:
“Have the support you need to direct your own life.”
Those are very different things.
A person can need help and still have autonomy.
A person can use accommodations and still be independent.
A person can have a whole team of supporters and still be the person in charge of their own life.
And honestly?
Most of us do this.
We just don’t call it Supported Decision-Making.
We call it:
“Hey, can you help me figure this out?”
Start Small
If the idea of creating a whole SDM system feels overwhelming, start with one area.
Maybe it’s healthcare.
Write down:
What help does my adult child need?
Who do they want helping?
What does that person actually do?
What does the adult still do themselves?
Then try it.
See what works.
Adjust.
Then move to another area.
The Administration for Community Living emphasizes that decisional supports should be tailored to the individual’s specific needs, values, priorities, wishes, abilities, and circumstances rather than treated like a one-size-fits-all checklist.
The Big Takeaway
Supported Decision-Making isn’t about abandoning your adult child.
It isn’t about pretending they don’t need help.
It isn’t about forcing independence.
And it isn’t about parents stepping out of the picture.
It is about changing the question.
Instead of:
“Who should make decisions for this person?”
we start asking:
“What support does this person need to make their own decisions?”
Sometimes the answer will be:
A lot.
Sometimes:
A little.
Sometimes:
It depends on the decision.
And that’s okay.
Because the whole point of Supported Decision-Making is that the support is supposed to be built around the person.
Not around a diagnosis.
Not around what is easiest for everyone else.
And not around the assumption that needing help means giving up your rights.
Your adult child deserves support.
And they also deserve a voice in deciding what that support looks like.
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