We grow with you
Life Stage Transition Resources
Navigating Health Care Transitions
Background: A New Challenge
Over the last 30 years, the transition from pediatric to adult health care providers and systems has become a pressing issue for families of young people with special health care needs. Thanks to advances in medical treatment, the survival rate for youth with special health care needs has improved tremendously, and life expectancy continues to rise.
While all this is good news, it poses new challenges for the healthcare system, as well as school systems and other services. Finding adult health care providers who are experienced and willing to accept emerging youth with complex needs can be difficult, and youth are often unprepared to manage their health care and gain increased independence. Advance preparation and partnering with your healthcare providers can assist in a successful pediatric to adult health care transition.
Transition Guide by Life Stage
Life Skills for Emerging Adults
Family Involvement
School
Career Planning
Health/Health Coverage
Life Skills for Emerging Adults
Age 10-14:
-
Order meals at restaurants independently
-
Pay for items at the store independently
-
Learn how to use a cell phone and carry one, if applicable
-
Find adult mentor/role model with similar disability
-
Talk about your dreams for the future with the people you care about and ask for their help
-
Increase independence of Activities of Daily Living (ex: dressing, feeding, bathing, toileting, etc.)
Age 15-17:
-
Arrive on time to appointments, work, & activities
-
Carry state ID card or driver’s license and a copy of health insurance card
-
Schedule your own appointments
-
Think about future living arrangements
-
Carry a cell phone, if applicable
-
Work on self-advocacy in meetings and appointments
-
Seek care from adults other than parents so that you learn to interact with new people and communicate needs to others
-
Attend a sleep-away camp to foster independence
-
Teach teen how to handle emergency vs. non-emergency medical situations
-
Discuss vocational training vs. post-secondary education
-
Special Needs Trust, if applicable
Age 18:
-
Register to vote
-
Males: Must register for draft
-
Plan future living arrangements
-
Carry a cell phone, if applicable
-
Prepare your “elevator speech” about your diagnosis for providers, therapists, teachers, etc.
-
Obtain a passport, if desired
-
Work on self-advocacy in meetings and appointments
-
Seek care from adults other than parents so that you learn to interact with new people and communicate needs to others
Age 19-21:
-
Inform local fire department of necessary accommodations for emergency preparedness
-
Carry a cell phone, if applicable
-
Bring together people you care about to plan with you and help you reach your goals (Person-Centered Planning)
-
Practice self-advocacy in interactions with doctors and professionals
-
Seek care from adults other than parents so that you learn to interact with new people and communicate needs to others
-
Talk about your dreams for the future with the people you care about and ask for their help
Age 22-26:
-
Take on as many independent living responsibilities as able
-
Maintain friendships & social life
-
Inform local fire department of necessary accommodations for emergency preparedness
-
Create list of necessities for emergency preparedness (medication, equipment, supplies, etc.)
-
Carry a cell phone, if applicable
-
Bring together people you care about to plan with you and help you reach your goals
-
Practice self-advocacy in interactions with doctors and professionals
-
Talk about your dreams for the future with the people you care about and ask for their help
Family Involvement
Age 10-14:
-
Discuss child’s hopes & dreams
-
Have child help with chores to teach living skills
-
Discuss sexuality & family planning issues
-
Open bank account for child and discuss money and budgeting
-
Inform local fire department of necessary accommodations for emergency preparedness
-
Develop family plan of what to do in case of emergency
-
Set up a Special Needs Trust, if applicable
-
Talk about end-of-life plans with family
-
Facilitate opportunities for your child to make his or her own choices and decisions
-
Find or create a safe place to talk about experiences with the disability (family discussions, support groups, counseling)
Age 15-17:
-
Create opportunities to test independence of youth in a safe environment
-
Explore public transportation together or use a community resource to learn about transportation to increase independence
-
Find or create a safe place to talk about experiences with the disability (family discussions, support groups, counseling)
-
Assist youth in connecting with an adult mentor/role model with a similar disability
Age 18:
-
Discuss representative payee & guardianship
-
Assist teen with living options
-
Discuss vocational training vs. post-secondary education
-
Inform local fire department of necessary accommodations for emergency preparedness
-
Determine guardianship, Medical Durable Power of Attorney, or conservatorship
-
Explore Special Needs Trust, if applicable
-
Facilitate opportunities for your child to make his or her own choices and decisions
-
Find or create a safe place to talk about experiences with the disability (family discussions, support groups, counseling)
-
Assist youth in connecting with an adult mentor/role model with a similar disability
Age 19-21:
-
Plan future living arrangements
-
Develop a long-term financial plan
-
Discuss vocational training vs. post-secondary education
-
Determine guardianship, Medical Durable Power of Attorney, or conservatorship
-
Explore/set up Special Needs Trust, if applicable
-
Support independent choices
-
Find or create a safe place to talk about experiences with the disability (family discussions, support groups, counseling)
Age 22-26:
-
Determine guardianship, Medical Durable Power of Attorney, or conservatorship
-
Establish Special Needs Trust, if applicable
-
Encourage increased & ongoing independence
-
Discuss “End of Life” planning for all family members
-
Find or create a safe place to talk about experiences with the disability (family discussions, support groups, counseling)
School
Age 10-14:
-
Incorporate transition planning into last middle school IEP because it will follow student to high school
-
Update IEP as often as necessary, at least once per school year
-
All IEP requests should be in writing to the school district and special educationdepartment
-
Support student to engage in middle school and high school classes and extra-curricular activities related to their interests and strengths
-
If assistive technology (AT) device is needed at school, make sure it is written into IEP
-
Parents: get involved in child’s school to create partnerships and build relationships
Age 15-17:
-
At 15, incorporate first transition goal into IEP
-
Update IEP/ transition goals as often as necessary, at least once per school year
-
Student attends own IEP meeting to work on self-advocacy
-
Transition goals should be individualized to student’s interests
-
Decide on transition program with vocational training vs. graduation and higher education
-
Support student to engage in classes and extra-curricular activities related to their interests and strengths
Age 18:
-
Update IEP/ transition goals as often as necessary, at least once per school year
-
Attend your own IEP and work on self-advocacy
-
All IEP requests should be in writing to the school district and special education department
-
Transition goals should be individualized to student’s interests
-
Can walk at graduation with high school class if graduating or if utilizing school transition services
Age 19-21:
-
Update IEP/ transition goals as often as necessary, at least once per school year
-
Attend your own IEP and work on self-advocacy
-
Transition goals should be individualized to student’s interests
-
At 21, complete school transition services
-
Begin post-secondary education, if desired
-
Utilize 504 Plan (ADA) to receive accommodations in college and work
Age 22-26:
-
Continue in post-secondary school, if desired
-
504 Plan can be utilized in college to receive accommodations
-
Stay involved with continuing education or certificate programs, if applicable to career path
Career Planning
Age 10-14:
-
Start thinking about & researching possible career interests: take advantage of career fairs, job shadowing opportunities
-
Volunteer in a variety of environments
Age 15-17:
-
Begin job shadowing
-
Practice completing job applications
-
Develop a résumé or video résumé
-
Work summer job, if applicable
-
Volunteer in a variety of environments
-
Learn about a variety of career opportunities based on your interests and strengths
-
Remember to think outside the box!
Age 18:
-
Continue job exploration/ job training
-
Work summer job, if applicable
-
Volunteer in a variety of environments
-
Complete résumé and/or video résumé
-
Find opportunities to connect with career interests
Age 19-21:
-
Determine vocational direction & apply to job postings
-
Continue volunteering to learn about opportunities and to network
-
Learn to self-advocate for accommodations in the work environment
-
Look into work incentive programs through SSA
Age 22-26:
-
Continue work or apply for jobs matching interests & skills
-
Volunteer, if time permits
-
Learn to self-advocate for accommodations in the work environment
-
Apply for jobs
-
If not able to work, make plans for daily activities & community involvement
Health/Health Coverage
Age 10-14:
-
Ask questions at doctor appointments
-
Obtain EPSDT services from Healthy Communities, if on Medicaid
-
Build relationships with your medical providers
-
Create a list of contacts for doctors, therapists, equipment vendors, etc., in case of emergency
-
Ask for care coordinator through insurance to help with services and needs
-
Learn more about your health & health care needs
-
Develop a portable medical summary including medications
-
Develop a family medical history
Age 15-17:
-
Establish plan for adult medical services & obtain referrals
-
Update list of contacts for doctors, therapists, equipment vendors, etc., in case of emergency
-
Obtain a Letter of Medical Necessity for use with insurance, therapies, SSA, and other systems
-
Learn more about your medical background
-
Schedule medical appointments independently
-
Learn to refill prescriptions independently
Age 18:
-
Switch to adult medical providers
-
Obtain EPSDT services through age 20, if on Medicaid
-
Apply for adult SSI in order to keep Medicaid, if applicable
-
Update list of contacts for doctors, therapists, equipment vendors, etc., in case of emergency
-
Have an understanding of medical background & needs
-
Update Letter of Medical Necessity with current abilities and needs
-
Update portable medical summary
Age 19-21:
-
Build relationships with adult medical providers
-
EPSDT services through age 20 (dental & vision coverage ends at 18 if on Medicaid)
-
Dental and vision care can be written into DD service plans
-
Update list of contacts for doctors, therapists, equipment vendors, etc., in case of emergency
-
Assume responsibility for health care needs (make appointments, fill prescriptions, manage medication)
-
Update Letter of Medical Necessity with current abilities and needs
Age 22-26:
-
At 26 yrs old, adult is no longer eligible for parent’s health insurance (unless negotiated with private carrier)
-
Build relationships with adult medical providers
-
Update list of contacts for doctors, therapists, equipment vendors, etc., in case of emergency
-
Obtain updated Letter of Medical Necessity with current abilities and needs, as needed
Age 10-14: Awareness
Start Transition!
Life Skills for Emerging Adults
-
Order meals at restaurants independently
-
Pay for items at the store independently
-
Learn how to use a cell phone and carry one, if applicable
-
Find adult mentor/role model with similar disability
-
Talk about your dreams for the future with the people you care about and ask for their help
-
Increase independence of Activities of Daily Living (ex: dressing, feeding, bathing, toileting, etc.)
-
Family Involvement
-
Discuss child’s hopes & dreams
-
Have child help with chores to teach living skills
-
Discuss sexuality & family planning issues
-
Open bank account for child and discuss money and budgeting
-
Inform local fire department of necessary accommodations for emergency preparedness
-
Develop family plan of what to do in case of emergency
-
Set up a Special Needs Trust, if applicable
-
Talk about end-of-life plans with family
-
Facilitate opportunities for your child to make his or her own choices and decisions
-
Find or create a safe place to talk about experiences with the disability (family discussions, support groups, counseling)
School
-
Incorporate transition planning into last middle school IEP because it will follow student to high school
-
Update IEP as often as necessary, at least once per school year
-
All IEP requests should be in writing to the school district and special education department
-
Support student to engage in middle school and high school classes and extra-curricular activities related to their interests and strengths
-
If assistive technology (AT) device is needed at school, make sure it is written into IEP
-
Parents: get involved in child’s school to create partnerships and build relationships
Career Planning
-
Start thinking about & researching possible career interests: take advantage of career fairs, job shadowing opportunities
-
Volunteer in a variety of environments
Health/ Health Coverage
-
Ask questions at doctor appointments
-
Obtain EPSDT services from Healthy Communities, if on Medicaid
-
Build relationships with your medical providers
-
Create a list of contacts for doctors, therapists, equipment vendors, etc., in case of emergency
-
Ask for care coordinator through insurance to help with services and needs
-
Learn more about your health & health care needs
-
Develop a portable medical summary including medications
-
Develop a family medical history
Age 15-17: Exploration
Explore Interests and Talents!
Life Skills for Emerging Adults
-
Arrive on time to appointments, work, & activities
-
Carry state ID card or driver’s license and a copy of health insurance card
-
Schedule your own appointments
-
Think about future living arrangements
-
Carry a cell phone, if applicable
-
Work on self-advocacy in meetings and appointments
-
Seek care from adults other than parents so that you learn to interact with new people and communicate needs to others
-
Attend a sleep-away camp to foster independence
-
Teach teen how to handle emergency vs. non-emergency medical situations
-
Discuss vocational training vs. post-secondary education
-
Special Needs Trust, if applicable
Family Involvement
-
Create opportunities to test independence of youth in a safe environment
-
Explore public transportation together or use a community resource to learn about transportation to increase independence
-
Find or create a safe place to talk about experiences with the disability (family discussions, support groups, counseling)
-
Assist youth in connecting with an adult mentor/role model with a similar disability
School
-
At 15, incorporate first transition goal into IEP
-
Update IEP/ transition goals as often as necessary, at least once per school year
-
Student attends own IEP meeting to work on self-advocacy
-
Transition goals should be individualized to student’s interests
-
Decide on transition program with vocational training vs. graduation and higher education
-
Support student to engage in classes and extra-curricular activities related to their interests and strengths
Career Planning
-
Begin job shadowing
-
Practice completing job applications
-
Develop a résumé or video résumé
-
Work summer job, if applicable
-
Volunteer in a variety of environments
-
Learn about a variety of career opportunities based on your interests and strengths
-
Remember to think outside the box!
Health/ Health Coverage
-
Establish plan for adult medical services & obtain referrals
-
Update list of contacts for doctors, therapists, equipment vendors, etc., in case of emergency
-
Obtain a Letter of Medical Necessity for use with insurance, therapies, SSA, and other systems
-
Learn more about your medical background
-
Schedule medical appointments independently
-
Learn to refill prescriptions independently
Age 18: Preparation
Welcome to Adulthood!
Life Skills for Emerging Adults
-
Register to vote
-
Males: Must register for draft
-
Plan future living arrangements
-
Carry a cell phone, if applicable
-
Prepare your “elevator speech” about your diagnosis for providers, therapists, teachers, etc.
-
Obtain a passport, if desired
-
Work on self-advocacy in meetings and appointments
-
Seek care from adults other than parents so that you learn to interact with new people and communicate needs to others
Family Involvement
-
Discuss representative payee & guardianship
-
Assist teen with living options
-
Discuss vocational training vs. post-secondary education
-
Inform local fire department of necessary accommodations for emergency preparedness
-
Determine guardianship, Medical Durable Power of Attorney, or conservatorship
-
Explore Special Needs Trust, if applicable
-
Facilitate opportunities for your child to make his or her own choices and decisions
-
Find or create a safe place to talk about experiences with the disability (family discussions, support groups, counseling)
-
Assist youth in connecting with an adult mentor/role model with a similar disability
School
-
Update IEP/ transition goals as often as necessary, at least once per school year
-
Attend your own IEP and work on self-advocacy
-
All IEP requests should be in writing to the school district and special education department
-
Transition goals should be individualized to student’s interests
-
Can walk at graduation with high school class if graduating or if utilizing school transition services
Career Planning
-
Continue job exploration/ job training
-
Work summer job, if applicable
-
Volunteer in a variety of environments
-
Complete résumé and/or video résumé
-
Find opportunities to connect with career interests
Health/Health Coverage
-
Switch to adult medical providers
-
Obtain EPSDT services through age 20, if on Medicaid
-
Apply for adult SSI in order to keep Medicaid, if applicable
-
Update list of contacts for doctors, therapists, equipment vendors, etc., in case of emergency
-
Have an understanding of medical background & needs
-
Update Letter of Medical Necessity with current abilities and needs
-
Update portable medical summary
Age 19-21: Education/Training
Focus on Job Skills and Life Skills!
Life Skills for Emerging Adults
-
Inform local fire department of necessary accommodations for emergency preparedness
-
Carry a cell phone, if applicable
-
Bring together people you care about to plan with you and help you reach your goals (Person-Centered Planning)
-
Practice self-advocacy in interactions with doctors and professionals
-
Seek care from adults other than parents so that you learn to interact with new people and communicate needs to others
-
Talk about your dreams for the future with the people you care about and ask for their help
Family Involvement
-
Plan future living arrangements
-
Develop a long-term financial plan
-
Discuss vocational training vs. post-secondary education
-
Determine guardianship, Medical Durable Power of Attorney, or conservatorship
-
Explore/set up Special Needs Trust, if applicable
-
Support independent choices
-
Find or create a safe place to talk about experiences with the disability (family discussions, support groups, counseling)
School
-
Update IEP/ transition goals as often as necessary, at least once per school year
-
Attend your own IEP and work on self-advocacy
-
Transition goals should be individualized to student’s interests
-
At 21, complete school transition services
-
Begin post-secondary education, if desired
-
Utilize 504 Plan (ADA) to receive accommodations in college and work
Career Planning
-
Determine vocational direction & apply to job postings
-
Continue volunteering to learn about opportunities and to network
-
Learn to self-advocate for accommodations in the work environment
-
Look into work incentive programs through SSA
Health/Health Coverage
-
Build relationships with adult medical providers
-
EPSDT services through age 20 (dental & vision coverage ends at 18 if on Medicaid)
-
Dental and vision care can be written into DD service plans
-
Update list of contacts for doctors, therapists, equipment vendors, etc., in case of emergency
-
Assume responsibility for health care needs (make appointments, fill prescriptions, manage medication)
-
Update Letter of Medical Necessity with current abilities and needs
Age 22-26: Career
Explore Life! Put Talents and Skills to Use!
Life Skills for Emerging Adults
-
Take on as many independent living responsibilities as able
-
Maintain friendships & social life
-
Inform local fire department of necessary accommodations for emergency preparedness
-
Create list of necessities for emergency preparedness (medication, equipment, supplies, etc.)
-
Carry a cell phone, if applicable
-
Bring together people you care about to plan with you and help you reach your goals
-
Practice self-advocacy in interactions with doctors and professionals
-
Talk about your dreams for the future with the people you care about and ask for their help
Family Involvement
-
Determine guardianship, Medical Durable Power of Attorney, or conservatorship
-
Establish Special Needs Trust, if applicable
-
Encourage increased & ongoing independence
-
Discuss “End of Life” planning for all family members
-
Find or create a safe place to talk about experiences with the disability (family discussions, support groups, counseling)
School
-
Continue in post-secondary school, if desired
-
504 Plan can be utilized in college to receive accommodations
-
Stay involved with continuing education or certificate programs, if applicable to career path
Career Planning
-
Continue work or apply for jobs matching interests & skills
-
Volunteer, if time permits
-
Learn to self-advocate for accommodations in the work environment
-
Apply for jobs
-
If not able to work, make plans for daily activities & community involvement
Health/ Health Coverage
-
At 26 yrs old, adult is no longer eligible for parent’s health insurance (unless negotiated with private carrier)
-
Build relationships with adult medical providers
-
Update list of contacts for doctors, therapists, equipment vendors, etc., in case of emergency
-
Obtain updated Letter of Medical Necessity with current abilities and needs, as needed