Transition: Healthcare Resources
A Family Toolkit: Pediatric-to-Adult Health Care Transition
Got Transition and its National Family Health Care Transition Advisory Group have developed a new toolkit for families to use to guide their youth’s transition from pediatric to adult health care.
The Family Toolkit includes easy-to-use resources for youth and families to help youth assume more independence in taking care of their own health and using health services. Materials include a transition timeline, questions to ask your doctor, what turning 18 means for one’s health and more.
Adult Congenital Heart Disease (ACHD) Clinic Directory
The Adult Congenital Heart Association’s ACHD Clinic Directory provides information on ACHD Board Certified providers certified by the American Board of Internal Medicine (ABIM) and ACHA ACHD Accredited Centers.
You can search for clinics by zip code and state. You can find more details and health information on the Adult Congenital Heart Association’s website.
Center for Transition to Adult Health Care for Youth with Disabilities
The Center for Transition to Adult Health Care for Youth with Disabilities offers a wide range of tools to empower youth and young adults with intellectual and developmental disabilities (ID/DD) ages 12 to 26 to direct their transition from pediatric to adult care. This national site is a one-stop shop where young people and their families, clinicians, and direct care providers can find videos and other resources for understanding and navigating the transition to adult health care.
Site resources include:
- An “Introduction to Health Care Transition (HCT)” for youth and young adults
- A “Moving to Adult Health Care: Six-Part Toolkit Series for Health Care Transition”
- Videos and interactive quizzes
- Changes in insurance and legal rights
- Quick guides and infographics
Charting the LifeCourse Nexus Training and Technical Resource Center
Charting the LifeCourse Nexus or LifeCourse Nexus framework was developed by families to help individuals with disabilities at any age or stage of life and their families develop a vision for a good life. LifeCourse Nexus provides free infographics, YouTube videos and step-by-step tip sheets to help people of all ages and abilities with identifying their dreams and desires, thinking about what they need to know and do, identifying how to find or develop supports, and discovering what it takes to live the lives they want to live.
The LifeCourse Nexus Library features a wide range of downloadable materials to help with the transition from school to community, including:
- Person-centered tools for exploring your desires and unique needs
- The family perspective booklet and tip sheets
- Kits (The Life Domains) focusing on life stages and exploring employment, healthy living, housing options and other areas
- Videos and step-by-step tip sheets on using the Integrated Supports Star tools to bring everything together
Conquering CHD Transition Checklist
Conquering CHD has put together a Conquering CHD Transition Checklist to help youth with congenital heart disease manage their own care as they reach adulthood and move from their pediatric doctor to an Adult Congenital Heart Disease doctor.
DCCC’s Self-Care Skills Assessment for Young Adults
The Division of Specialized Care for Children’s (DSCC) assessment form will help young adults see what they already know about their health, how to use health care and the areas they want to learn more about as they transition to adulthood.
Disability Information and Access Line
The Disability Information and Access Line (DIAL) helps people with disabilities connect to local community resources that support independent living. Dial provides information on essential services such as transportation, housing support, disability rights, and more.
The hotline’s trained staff are available to:
- Help find local vaccination locations
- Set up a vaccination appointment
- Connect with local COVID testing options
- Connect callers to local services, such as accessible transportation, housing support, disability rights and other independent living resources
Call, text or videophone DIAL Monday through Friday from 7 a.m. to 8 p.m. at (888) 677-1199.
You can also email the hotline at DIAL@n4a.org or start an online chat with an information specialist.
You can also connect to an agent in American Sign Language.
DSCC and Illinois LEND’s Transition Resources for Hispanic Teens in the Chicago Area
The transition to adulthood can be a challenging time for both adolescents and their parents. These challenges can be more difficult when the adolescent has a disability.
Illinois LEND (Leadership Education in Neurodevelopmental and related Disabilities) and the Division of Specialized Care for Children (DSCC) partnered to provide helpful information about the unique challenges Hispanic families can face during the transition to adulthood. This resource list is aimed at transition-age teenagers and their families in the Chicago area:
DSCC’s Annual Health Visits for Teens Tip Sheet
Regular checkups or health visits are a part of everyone’s life. This tip sheet helps young adults understand the importance of annual health visits during the transition to adulthood.
DSCC’s Drugs and Smoking Tip Sheet for Teens
The Division of Specialized Care for Children (DSCC) created this tip sheet to help youth with special healthcare needs understand the importance of taking care of their bodies and knowing the facts about using tobacco, e-cigarettes, vaping, drugs and alcohol.
Medications, tobacco, street drugs, and alcohol are all chemicals that cause your body to react in different ways. Knowing what you are putting into your body and learning to say “no” to peer pressure are important steps in deciding what is right for you.
“It’s Your Body – Know What You Are Putting Into It” tip sheet in English
“It’s Your Body – Know What You Are Putting Into It” tip sheet in Spanish