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Navigating Transitions with Your Child

Children and youth with special health care needs face a continuum of changes throughout their lives, including moves between hospitals, home, schools, work or college, and from Pediatric to Adult Health Care (see graphic below). Each transition is an opportunity for your child and family to gain skills that will help you and your child optimize success and manage future transitions. This section provides information to help you and your child navigate the changes during these transition periods.

The Medical Home, as a source of ongoing comprehensive care, is an ideal place to address these issues and should include transition planning throughout your child's life. The more understanding you and your child have about his or her condition and needs, the better equipped you will all be for your child to attain increasing independence as he or she approaches adulthood.
"...Transition is a process, not an event. The actual process should be gradual, occurring in harmony with adolescent and family development. While there is not one current model, whenever it occurs, communication among pediatric and adult providers, parents and youth is critical." [National Dissemination Center for Children with Disabilities.]
This section is organized into various transition categories to allow access to important information from many different starting points, including the child's age and specific needs. No matter their ability or specific challenges, children, youth, and adults with special health care needs will benefit from a collaborative and supportive effort toward making transitions as smooth as possible.

To develop a Life Plan: begin with the end goals in mind

Transition Continuum

Resources

Information & Support

For Parents and Patients

Got Transition?
Center for Health Care Transition Improvement, a national resource for improving health care transition supports for youth moving into the adult health care system, for health care professionals, families, youth, and state policy makers. The Six Core Elements of Health Care Transition 2.0 define the basic components of health care transition support.

American Academy of Pediatrics Transition Website
This website offers information on transitions from pediatric to adult health care for adolescents with special health care needs.

Respecting the Young Adult Patient Video
The Young Adult Advisory Committee (YAC) for the Utah Medical Home - Integrated Services Project (UISP) provides these tips for doctors helping youth with disabilities transition to adult care services at the 2007 UISP/UPIQ Learning Session.

Transition Tips for Parents of Newborns or Newly Diagnosed Children with Disabilities(PDF Document 483 KB)
This pamphlet developed by Shriners Hospital for Children, also called A New Start, provides information for parents on coping, staying strong, building hope, utilizing resources, and using health care efficiently.

Transition Tips for Young Adults(PDF Document 348 KB)
This pamphlet developed by Shriners Hospital for Children, also called Moving On, provides information for young adults on moving to adult health care, paying for health care, preparing for the future, getting around in the community, and becoming more independent. It also offers a list of other resources and websites.

Transition Tips for Parents of Young Adults with Disabilities(PDF Document 346 KB)
This pamphlet developed by Shriners Hospital for Children, also called Moving On, provides information for parents on letting go, assisting their young adults to become more independent, find health insurance, and transition to adult health care, as well as information on guardianship issues. It also offers a list of other resources and websites.

Transition Timeline from the Utah School for the Deaf and Blind(PDF Document 1.1 MB)
The timeline and information on this linked page provide parents, children, adolescents, and young adults with helpful hints about the many transitions from birth through the young adult years.

Becoming Leaders for Tomorrow
This Project, from the Center for Persons with Disabilities at Utah State University, provides transition and leadership training information for youth and young adults with disabilities.

Transitioning to Adulthood for Youth and Young Adults Brochure(PDF Document 86 KB)
This tri-fold brochure helps youth and young adults with special health care needs prepare to transition to adulthood.

Transition Information for Parents and Medical Providers Brochure(PDF Document 65 KB)
This tri-fold brochure helps parents and medical providers better assist youth and young adults with special health care needs as they transition from youth to adulthood.

Authors

Author: Gina Pola-Money - 12/2011
Content Last Updated: 1/2012