Resources for Teens and Adults

Many potential challenges exist for parents as they help guide their adolescent or young adult child who has a 22q11.2 syndrome. The goal is to have him or her become capable and competent in making good life choices. The following documents are designed for both parents/caregivers and other family members, including those with 22q11.2. These documents are only part of the solution. Staying engaged with the proper treatment specialists and other parents who have dealt with similar challenges is also important.

Empowering young women with the 22q11.2 Deletion Syndrome to share their lived experience and mental health support needs

This research project was to address this gap by offering a vehicle through which these young people could communicate their lived experiences and service recommendations to parents, educators, researchers, service providers and policy makers. It also aimed to support the development of mental health resilience by providing spaces for young adults to share their stories of mental health challenges and recovery. Resilience was defined simply to the young participants by the researcher as ‘the ability to bounce back after times when you felt upset by your emotions, thoughts or relationships’.

Read more 

“Becoming an Adult” Videos

The following four online videos are designed to provide guidance and suggestions to parents and other caregivers who are helping someone impacted by 22q11.2 make the transition from adolescence to adulthood.

Figuring out what a young adult will do after high school is challenging in general, but for young adults with special health care needs the challenges may be different. This video offers vocational guidance to make sure young adults get the most out of high school and are aware of their options, including post-secondary education, job training programs, jobs and day programs. Vocational Rehabilitation services, Adult Disability Resource Centers and Family to Family Health Information Centers are discussed as resources.

Planning for the future can be an exciting and nerve-wracking time for young adults with special health care needs and their families. This video shows and discusses the variety of residential programming available to people with disabilities in the adult world and offers information on how to make sure young adults are registered with the right services in their state.

There are many changes that occur as a child with a disability or with special health care needs becomes a legal adult and families need to know their options. This video addresses Health Care Power of Attorney, Health surrogacy laws and legal guardianship. Additionally, information about estate and long-term planning is explained, so young adults with special health care needs and their families can make sure they know how to access the benefits they are eligible for in adulthood. Special needs trusts and letters of intent are discussed.

Moving out of the pediatric health care world is a major milestone in every young adult’s life. This video shows and describes ways for young people to be more involved in their health care, what skills they will need to be successful and how being a patient in the adult health care world will be different from their pediatric experience.

Also in Resources