Transition to Adulthood Resources
Helpful tips for transition
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Practice three sentences that describe your health condition.
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Carry the names and phone numbers of your doctors, medical conditions, medicines and allergies with you. MyHealth Passport, a resource that can help you keep all of this information in one place, can be found on pages 12-13 of the All About Me booklet.
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If you have very complex medical needs, ask your doctor to fill out a Pediatric Emergency Form that you can use if you need urgent or emergency care from someone other than your regular doctor.
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If you need more information about your specific medical condition, ask your medical team or go to the webpage for the Children's Mercy clinic where you are seen.
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Parents Offering Parent Support (POPS) is a network of parent volunteers who mentor other parents through the challenges of their child's health condition.
Transition to Adulthood Road Maps
Road Maps were created to help patients and families as a young adult moves into adulthood. Your medical team will help prepare young adults for the change from a pediatric model of care to an adult model of care.
A pediatric model of care is where parents or caregivers make most choices.
An adult model of care is where you will make your own choices.
We have created 2 road maps:
• Teens who will be independent in their care.
• Teens who will need on-going support.
All About Me
All About Me is a booklet of tips and tools to help you prepare to transition to adult health care. You can download the booklet in English and Spanish, or ask for a copy from your doctor:
Video resources
Community resources
Learn about community resources in your area:
Beacon Program resources for the community
The Beacon Program at Children’s Mercy provides a pediatric medical home for hundreds of children with medical complexity and their siblings. The staff at the Beacon Program have collected a range of resources to help families find extended support within the community. These resources provide useful tips and information about technology, community assistance, food services, mental health and more:
Other resources
Take a look at these helpful websites for more information about preparing for transition:
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Got Transition
Federally funded national resource center on health care transition. -
Building a Life
Guide for families of young adults with disabilities who are transitioning into adult life. -
iTransition Kansas App
Web- and device-based app for students with disabilities to use to help transition to adult life. -
Health Library (KidsHealth)
Educational health information for parents, teens and kids. -
Missouri Family to Family Resource Center
A statewide resource center to support families and those living with a special health care need. - School-Based Health Alliance
School-based health center playbook on health care transition. - PACER
National parent center on transition and employment. - Courageous Parents Network
Transition Planning for young adults with significant health care needs. - Generation Patient
Group that helps with events and online programs, and advocates for young adults living with chronic and rare conditions. - Transition Planning Assistance Program
Serving Jackson, Platte and Clay County residents with an I/DD diagnosis and eligible for county funding. - Teens Taking Steps to Diabetes Self Care
Diabetes videos to support teen transition. - Neuro Journey
Supports for caregivers of patients with a Severe Neurological Impairment (SNI) throughout the ARC of a life.
Higher education resources
Inclusion is defined as the including of students with disabilities into general academic courses on campus, across disciplines and departments with non-disabled peers.
The Taishoff Center at Syracuse University supports students through the inclusive/support model where individualized services and accommodations are provided as students take college classes based on personal choices and preferences.
The Think College Institute for Community Inclusion at the UMass Boston is a national organization dedicated to developing, expanding, and improving inclusive higher education options for people with intellectual disability.
Workforce Recruitment Program is a recruitment and referral program that connects college students and recent graduates with disabilities with summer or permanent jobs.
The Office of Disability Services at most universities is designed to coordinate and administer services and accommodations for students with documented disabilities.
College based health centers are exactly what the name implies. They are the center of health in schools where they are based. Students and families rely on school-based health centers to meet their needs for full range of age-appropriate health care systems, including primary care.
Utilizing health centers on campus and understanding the important of student health
An accommodation is a legally mandated modification or service that gives a student with a disability an equal opportunity to benefit from the educational process.
Accommodation 101. A collection of resources through Generation Patient for students with disabilities including chronic and rare diseases. Accommodations which can be requested include:
- priority enrollment
- extended time on exams and quizzes,
- extended/flexible deadlines on assignments
- flexible attendance
- note-taking support and resources
- housing accommodations,
- dining accommodations
- mobility accommodations
- transportation.
Types of college accommodations and services. Higher education institutions are required by law to provide supports and services to student with disabilities. It’s important to compare accommodations at different schools.
IEPs and 504 plans are not available while in college. Section 504 of the Rehabilitation Act still protects students from discrimination and colleges must provide accommodations.
Resources and Supports for College Students with Disabilities. Students living with a physical or learning disability have a right to attend college and receive accommodations to enable them to have a successful college experience.
Students with Disabilities Resource Guide. A resource for students with disabilities who are looking to enroll with a university. Financial aid and scholarship information and information about student life on campus.
College support services and accommodations for adolescents with ADHD
College guide for students with disabilities to successfully navigate higher education.
Employment Resource Workbook: Successfully Preparing Students with Disabilities
Students with Disabilities preparing for school after high school.
UCM Thrive: 2 year living at college program for individuals with intellectual disabilities
KU Transition Education Program: 2-year college experience for individuals with intellectual disabilities.
JCCC Clear Classes: Non-credit continuing education classes for adult with mild developmental disabilities or other cognitive disabilities.
ACED Classes-UMKC: Non-credit continuing education classes for adults with mild developmental disabilities or other cognitive disabilities
Disability scholarships exist to provide college funding for students with a disability that would make it difficult to attain a college degree. These scholarships help deserving students stay in school and achieve their educational and career goals more easily.
National Center for College Students with Disabilities is a federally funded project under the U.S. Department of education. Its purpose is to:
- provide technical assistance and information to anyone needing information about disability and high education
- collect information and do research about disability services at campuses in the United States, sharing findings with the public
- report to the U.S. Department of Education about the status of college students with disabilities in the U.S.
College scholarships and financial aid for students with disabilities
Transition Quick Guide. Taking Charge of Planning and Managing your own Health and Career Goals
My “Must Have” Papers. Tips about keeping and protecting important personal records and information.