Transition Special Interest Group

Description

Transition-age youth and young adults with Neurodevelopmental Disabilities (NDD) have complex medical and behavioral health needs, and families and youth report transition from pediatrics to adulthood as being one of the most challenging periods of their lives. Families often struggle to identify primary care providers and specialists who care for adults with NDDs and navigate non-healthcare systems and supports including community programs and government agencies and myriad new issues such as insurance changes, supported decision-making and initiating conservatorship/guardianship, developing independent living skills, encouraging reproductive and sexual health, ensuring mental health supports, and establishing post-secondary education and employment opportunities. Developmental-behavioral pediatricians and psychologists are not always equipped to adequately meet the needs of this growing population.

PURPOSE:

1. Educate members, including trainees, using a “whole person approach” regarding transition to adulthood for individuals with NDDs.
2. Support members who work in this niche subspecialty area or those who would like to develop new initiatives in this area.
3. Collaborate with other SDBP committees and SIGs (e.g., Autism SIG, advocacy/practice issues committee).

ACTIVITIES PLANNED:

1. Regular SIG meetings at least quarterly (virtually for three and annually in-person at SDBP AM – September/October) and more frequently if need arises (of note, each meeting will include a brief inspirational presentation by a representative from an innovative program that supports young adults with developmental disabilities)
2. Workshops – specific topics might include:
   1. “How to establish a transition clinic”
   2. Future planning during high school for individuals with NDDs transitioning to adulthood
   3. Transition programming for individuals with NDDs transitioning to adulthood
   4. Supported decision-making/guardianship/conservatorship and Power of Attorney for individuals with NDDs transitioning to adulthood
   5. Post-secondary education opportunities for individuals with NDDs transitioning to adulthood
   6. Financial planning (including insurance) for individuals with NDDs transitioning to adulthood
   7. Adaptive/independent living skills for individuals with NDDs transitioning to adulthood
   8. Mental health for individuals with NDDs transitioning to adulthood
   9. Reproductive and sexual health for individuals with NDDs transitioning to adulthood
   10. Connecting to/collaborating with providers of adult healthcare
   11. Innovative programs for adults with NDDs
3. Expert guest speakers presenting content regarding both health care and non-healthcare related aspects of transition
4. Resource-sharing/-distributing (including via SDBP e-Library)
5. Support to members developing new transition clinics
6. Possible advocacy at various levels, including potential connection to Medical-Legal Partnerships