Julie McKinney, MS
October 7, 2021

Life after the IEP: How do I help my child with a disability transition to adulthood?

If your child has a disability, it might be hard to envision how they will transition to adulthood. Here’s how to set them up with the support they need for adult life.

Letting go – lots of transitions in life

As soon as our beautiful new child is born, they quickly start to move away from the safe cocoon that we use to protect them. They can’t be in the womb forever, but that’s where it starts, isn’t it? Or at least the first time we hold them.

“OMG–my little nugget is out in the world! I could drop them now!”

“OMG–my baby has to leave me and go to daycare!”

“OMG–are they ready for the pressure of school?”

They are constantly moving on to a phase that feels scarier than the last. More exciting maybe, but scarier, because we have to let go a bit more each time and trust that they will be ok.

Of course, this is how it’s supposed to be, right? They should get more and more independent with each month and each year. You might think it gets easier as they grow up, but for me, I think the hardest transition is from the comfort and structure of school to the vast unknown land of adult life. Too dramatic? Maybe so, but it sure feels that way sometimes.

The big OMG: Turning 22 or leaving high school – What now?

Teens with disabilities can get a lot of support in school through their IEP, but that ends as soon as they leave high school or turn 22, whichever comes first. What may also end, for many, is the expectation that they will keep living with us –their family– and that we’ll take care of all their needs. Of course we’ll always take care of them, but we need to start letting go and help them be as independent as they are able. And this age is when that really hits home!

If your child has a disability, it can be hard to envision their future as an adult. It’s hard to know how much they can do independently and what kind of support they will need. Of course this looks different for every child…or young adult as they are by this time. (They’ll always be “our child” though, won’t they?)

Some of our new young adults will be looking for a job to give them purpose and a living wage. Others will be braving the halls of college or technical school. Those who need help with the basic activities of daily living will require some creativity and persistence to find a living situation with a caring circle of support and meaningful community engagement. 

This is daunting…but there are programs and services to help. The key is to start exploring your child’s vision of adult life as early as possible, make sure they get the help they need to prepare, and set up their support system well before the transition out of school.

Start early – in middle school if possible!

Create a good transition plan to prepare your child for their adult goals

Transition planning starts in school with your child’s IEP team. The school must start this at least by age 16, but many will start earlier in middle school. You will create a Transition Plan that includes your child’s goals for adult life and the supports and programs to help them be ready to meet those goals. Make sure to aim high and advocate for the support your child needs. 

Supports may include job-readiness training, social skills classes, internships, or training in basic independent skills like taking the bus and shopping for groceries. If your child’s goal is college, there may also be tutoring, study skills training or accommodations for taking college entrance tests.

The transition planning process will also connect you to the adult services agencies that can help your child find work and live as independently as possible.  

What to do: 

  • Talk to your child and their IEP team about transition as early as you can–in middle school if possible. 

  • Develop a realistic but ambitious transition plan and advocate for the services that will help your child meet their goals.

  • Connect with the relevant adult service agencies to ensure a smooth transition of support once your child is out of school.

Click to Read Transcript

Families and Stories: Supporting your child’s transition to adulthood

[Tanja Foil] Well, I think the main thing we did was trying to encourage him to do things on his own. I mean, obviously — and he has autism, but that doesn’t mean that he can’t do lots and lots of things.

Sometimes it takes a little bit longer for him to learn something and to catch on, but he’s very routine-focused. So once he gets into a routine and once he has mastered something and it becomes part of his routine, you don’t even really have to remind him to do it. He remembers and he just does it as a matter of course.

So trying to remember that he can do lots of things is important.

Give your child increasing responsibilities so they’ll be ready for adult life 

Once your child is on their own, they will need to step up and be more independent. Think of the things you do for your child now: Set up meetings with teachers? Remind them to get work done on time? Do their laundry and dishes? Make doctors appointments? Depending on their abilities, many things we do for our kids in high school are things they will have to learn to do for themselves eventually. Help them learn these skills now while they are still living with you.  

What to do:

  • List the activities that you do for your child.

  • Talk with them about which ones they feel they can start doing on their own.

  • Help them learn these tasks and let them practice.

  • Add new ones as they get older. 

  • Help them learn how to ask for help when they need it.

Click to Read Transcript

Families and Stories: Supporting your child’s transition to adulthood

[Andy Foil] Do things on my own. And by the way, my parents aren’t gonna be here forever, I know. So they’re teaching me stuff and I’m cutting the grass sometimes. And I’m also every Monday, late afternoon, I take out the trash and the recycling …and all.

And every once in a while, my grandmother, who’s very smart, she [mumbling] (I’ve been sometimes coming to her house) and she’s been teaching me to cook on my own. She’s a really good cook.

Start letting go while they are still in your care

Let your child grow up. Let them do things on their own. Let them spend some time away from you. This is hard when you know that many activities are hard for them, and they will have to struggle. But you may be surprised when you let go and see what your child can accomplish on their own!

The transition from school to adulthood for youth with disabilities is a tough one for both parents and young adults. But there is help and support. Find the help, guide your child through, and let them show you what they can do! 

Learn more:

Learn about the transition planning process

See a timeline of transition activities during high school

  • Julie McKinney, MS

    Director of Training / Health Literacy Specialist

    Julie McKinney has over 25 years of experience in health literacy, plain language, and adult education. She has deep expertise in writing information so it’s easy to understand, and has developed trainings for educators in clear communication.

    At Exceptional Lives, she ensures that our content is clear and friendly. She also works to strengthen relationships with community partners, and designs trainings that help them connect with families.
    Julie also has experience parenting kids with ADHD, learning disabilities and significant intellectual disability. She has ushered her own children through schooling and transition to adulthood, and is committed to helping make this process easier for others.

    Her core view is that good relationships are the key to just about anything we hope for.

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