Main Body

NYMAC
(New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services)

National Metabolic and Genetic Conditions Transition Work Group

The Interregional Transition Work Group has been formed by the seven Genetics and Newborn Screening Service Regions funded by the federal Health Resources and Services Administration/Maternal and Child Health Bureau (go to www.nccrcg.org for information about all the regions and the National Coordinating Center) to represent adolescents and young adults with special health care needs, their families, pediatricians and medical specialists.

Its vision is to make transition from pediatric medical care to adult medical care as smooth as possible by providing guidelines, evaluation of readiness, forums for sharing experiences, and information on health insurance, guardianship and advocacy issues.

Chairs: Susan Waisbren, PhD and Louis E. Bartoshesky, MD, MPH, MALS

Coordinator: Kate Tullis, PhD
Phone: 302-651-6367

• Secure website for work group members:
  www.westernstatesgenetics.org/
  transitionwg/index.htm

  For information on entering this site or with problems contact Pauline Mui at (808) 733-9072 or pauline@hawaiigenetics.org

• Membership

  Membership is open to anyone with concerns about transition. It currently includes representatives from each of the seven Genetics and Newborn Screening Service Regions

• Conference Calls

  Conference Calls are usually held on the fourth Wednesday of each month at 12:00 noon. Contact Kate Tullis for call-in information

• Activities

  Developed strategies for surveying metabolic centers and metabolic programs to determine their policies and procedures - if any - regarding transition of children with metabolic disorders.

  Follow-up may include development of similar strategies for surveying young adults and their families who are in the midst of or who have completed transition to adult health care.

  Discussed the unique needs of cognitively and physically intact young adults with metabolic disorders and how those needs are different from those of young adults with cognitive delay and/or physical disability. Both groups have medical, social, and vocational needs with which the adult health care community is often unfamiliar.

  Reviewed available resources (surveys, check lists, educational materials)

  • New Hamphire Survey of Adult Health Care Providers about
    Health Care Transition for Youth with Special Health Care Needs
  • Healthy Ready to Work National Resource Center
  • New York State Institute for Healthy Transitions for Youth
    with Developmental Disabilities
  • National Consortium on Leadership and Disability for Youth

  Worked with the Healthy and Ready to Work National Resource Center to explore these further

  Explored how transition needs may vary from region to region and discussed in some detail the benefits of an interdisciplinary approach to transition

  For more information pertaining to this Work Group and its activities, please contact the Coordinator.