The Adult Life Committee is made up of parents whose children have already transitioned or those who have knowledge of transitioning into adulthood. Their goal is to gain a better understanding of the various transition aspects as they are anticipated and/or experienced by Dupers and their Families. Their intention is to identify the aspects that are most critical and, through the work of the Adult Life Committee, develop the resources and strategies which will help families achieve successful outcomes.
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.
This toolkit was developed for families to use during pediatric-to-adult HCT and includes resources for both parents/caregivers and youth/young adults.
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.
Transition planning covers everything from assessments, developing postsecondary goals, and identifying additional support services, to graduating with the right diploma or certificates.
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.
From Navigating the Future (2017) 9TH INTERNATIONAL FAMILY CONFERENCE. July 23rd-26th, 2017. Crowne Plaza-Redondo Beach and Marina, Redondo Beach, CA.
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?