Nosotros crecemos contigo
Recursos de transición de etapa de vida
Navegando las transiciones de atención médica
Antecedentes: un nuevo desafío
ā
En los últimos 30 años, la transición de proveedores y sistemas de atención médica pediátrica a adulta se ha convertido en un problema apremiante para las familias de jóvenes con necesidades especiales de atención médica. Gracias a los avances en el tratamiento médico, la tasa de supervivencia de los jóvenes con necesidades especiales de atención médica ha mejorado enormemente y la esperanza de vida sigue aumentando.
ā
Si bien todo esto son buenas noticias, plantea nuevos desafíos para el sistema de salud, así como para los sistemas escolares y otros servicios. Encontrar proveedores de atención médica para adultos que tengan experiencia y estén dispuestos a aceptar a jóvenes emergentes con necesidades complejas puede ser difícil, y los jóvenes a menudo no están preparados para administrar su atención médica y obtener una mayor independencia. La preparación anticipada y la asociación con sus proveedores de atención médica pueden ayudar en una transición exitosa de atención médica pediátrica a adulta.
Transition Guide by Life Stage
Life Skills for Emerging Adults
āFamily Involvement
School
Career Planning
Health/Health Coverage
Life Skills for Emerging Adults
ā
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.)
ā
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)
ā
ā
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
ā
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
ā
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.)
-
ā
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
ā
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
ā
Age 19-21: Education/Training
Focus on Job Skills and Life Skills!
ā
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
ā
Age 22-26: Career
Explore Life! Put Talents and Skills to Use!
ā
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