Transitioning to Adulthood

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The Dup15q Adult Life Committee, made up of parents whose children have already transitioned or those who have knowledge of transitioning into adulthood, developed/researched resources and strategies that will help families achieve successful outcomes. They identified the aspects that are most critical and gained a better understanding of the various transition aspects as they are anticipated and/or experienced by Dupers and their Families.

Tips from the Adult Life Committee

  • Start looking in your communities for transition programs around age 15/16. (Adult living, day programs, rec programs)
  • Every time you talk to someone you will learn something. 
  • You can cultivate contacts and information as you go. The earlier you go the better. 
  • Reach out to other families in your community that have adult children with disabilities, they can help you navigate resources in your community.
  • Start cultivating friendship groups for your child. Learning leisure activities is so important.
  • As your child is coming up to the transition years, create a “Visual Resume” to share with potential programs. (your child’s school can help with this) Many programs will do an interview with your family.
  • If you were to choose any skill to focus on in the teen years it should be understanding and communicating Yes/No. This opens up a world of choices and independence for your child. 
  • Never give up hope.


Free Online Education Course

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Our friends at BrainRecovery Project are offering a free, self-paced, online course that will take a deep dive and learn about all the steps you need to take to build your child’s education transition plan. Transitioning to adulthood can be a challenging time for youth with neurological challenges. Includes special content specific to 1) youth with epilepsy; 2) youth who have had epilepsy surgery; 3) youth with multiple, significant disabilities.

Adult Transition Resources

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Six Core Elements of Health Care Transition

Transitioning Youth to an Adult Health Care Clinician

For use by Pediatric, Family Medicine, and Med-Peds Clinicians


A Family Toolkit: Pediatric-to-Adult Health Care Transition

This toolkit was developed for families to use during pediatric-to-adult HCT and includes resources for both parents/caregivers and youth/young adults.

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NORD Transitioning to Adult Care

As rare disease patients approach adulthood, they face the transition from parent-supervised pediatric care to more independent adult models whereby they take ownership of their care. This change can seem daunting for patients and parents, especially when dealing with rare disorders that involve multiple specialists that may be part of a care team. 

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New Guide: Education Transition For Youth With Neurological Conditions

Transition planning covers everything from assessments, developing postsecondary goals, and identifying additional support services, to graduating with the right diploma or certificates.

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Empowering Ability

Help your loved one (18+) with a developmental disability break free of the ‘special needs’ labels placed on them and build their own Awesome ‘Ordinary’ Life. Get the knowledge, support, and a community of like-minded families to help your loved one grow their independence, build friendships, create their own home, and more!

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Boost Your Loved One's Independence

Empowering Ability offers a FREE guide, where you’ll discover the exact strategies that hundreds of families are actually using to dramatically (and consistently) grow their loved one’s independence, regardless of their developmental disability.

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TSC Alliance Transition Workshop Series

Our Friends at the TSC Alliance hosted a webinar series on adult transitions, including guardianship, transition IEPs, adult services and housing.


CNF’s Transition of Care Program

Each patient transitioning from a child neurologist to an adult neurologist will have unique experiences and needs. CNF’s Transition of Care Program—its largest and most diverse program—helps to support youth, families, and child neurology teams in the medical transition from pediatric to adult health care systems.

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Adult Transition Tool Kit

The Autism Speaks Transition Tool Kit will help guide you on the journey from adolescence to adulthood.

Navigating the future

Thriving in adult life: supported living with friends

From Navigating the Future (2017) 9TH INTERNATIONAL FAMILY CONFERENCE. July 23rd-26th, 2017. Crowne Plaza-Redondo Beach and Marina, Redondo Beach, CA.


Transition to Adulthood

Dup15q Alliance Transitional Living Committee Presents “Transitions to Adulthood”. From Beyond All Limits (2019) 10th INTERNATIONAL FAMILY CONFERENCE.

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Navigating The ‘Services Cliff’: What Happens When Adults With Special Needs Turn 21

At age 21, adults with special needs age out of many education and occupational therapy programs. How do those with intellectual and developmental disabilities navigate their transition to adulthood? What resources are available in our region to help?