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.
Located in Park Ridge, the Adult Down Syndrome Center offers comprehensive medical and support services to Illinois residents aged 12 and older with Down syndrome. The Adult Down Syndrome Center’s website includes:
- Resources for people with Down syndrome, families/caregivers and healthcare professionals
- A video gallery
- Information on events, classes and programs
For questions, see the Adult Down Syndrome Center’s FAQ page or call (847) 318-2303.
To schedule an appointment, call (847) 318-2303 between 8:30 a.m. and 5 p.m.
The Adult Down Syndrome Center is a part of Advocate Health.
CaringInfo provides free advance directives and instructions for each state that you can download and save.
Brush Up on Your Dental Care Video and Guide
Good oral health and maintaining a healthy smile are important for everyone. Special Olympics offers a Brush Up On Your Dental Care video and guide to help people with disabilities understand and develop good oral hygiene habits, including brushing techniques, preparing for dental visits and common dental problems.
The easy-to-understand video demonstrates, step by step, how to prepare for a dental visit and care for your dental health.
The Brush Up on Your Dental Care Guide offers caregivers and self-advocates information on developing and maintaining a complete oral hygiene program. Information includes:
- Easy-to-follow instructions on proper brushing, rinsing and flossing techniques
- Suggestions for adaptive positions for these activities
- Common dental problems
- Oral health considerations during the growth and development of a child with intellectual disabilities
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 to understand and navigate 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.
Conversation Guides for End-of-Life Care
The Institute for Healthcare Improvement (IHI) provides free Conversation Guides to help you have conversations with a family member, friend, or other loved one about your – or their – wishes for care through the end of life.
All the guides are available to download and print at home for free. The guides include:
- Your Guide to Choosing a Health Care Proxy
- Your Guide to Being a Health Care Proxy
- Your Guide to Talking With a Health Care Team
- What Matters to Me Workbook
- Guide for Caregivers of a Child With Serious Illness
The guides are available in English, Spanish, Portuguese and Chinese.
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: