When youth turn 18, they must move from care at CHEO to care in the adult health care system. Youth with chronic medical conditions will need to adjust from the child and family centered approach at CHEO to a patient centered approach in the adult system. To make sure you’re ready for this change, we’ve developed a transition program to help you prepare.
This change isn’t a simple transfer. This transition is a gradual process over time. During this process, we’ll help you to:
Become more knowledgeable about your illness
Take a more active role in your health care
Develop skills so you can take care of yourself
What is my role?
Check out our Transition to Adult Care video:
As you get older, we’ll ask you to take part in your health care, in a way that’s appropriate for your age. We’ll give you tools to help you figure out which skills you already have, and skills you need to work on (with your family’s help). You’ll find that the support of your family during this transition will be really helpful.
Transition to Adult Care Toolkits
General toolkit
My health 3-sentence summary
What is a 3-Sentence Summary?
An easy way to discuss important health information with your health-care team at each visit
How do I use it?
Sentence 1: My age, diagnosis and briefmedical history
Sentence 2:My treatment plan
Sentence 3:My question/concern to talkabout during this visit
Example
"Hi, my name is Sally Smith.
I am 16 and have asthma. I have been hospitalized twice, but not in the last 5 years.
I have been taking Ventolin and Flovent since I was 3.
I am here today because I can't run anymore. I wheeze too much and can't breath".
Now it's your turn
Practice with the health -care providers you see the most
Ask if your 3-Sentence Summary is correct and includes all the important information
My Health Passport
My Health Passport is a customized, wallet - size card that gives you instant access to your paediatric medical information. It can be used when you go to a new doctor, visit an emergency room. You can print it for your wallet or email a copy to yourself to save it in your smart phone.
Download the My Transition app for iOS or Android.
Birth - 18 years skills list
Birth to 3 years
General
Cuddle, smile, sing and play with your child
Give your child choices
Apply for special funding/drug plan if required
Social/Physical
Read, sing and talk to your child
Let your child interact with other children to encourage social and language skills
Take your child to libraries, playgrounds, parks and playgroups
Your child should accumulate at least 180 minutes of physical activity at any intensity spread throughout the day including:
A variety of different activities in different environments
Activities that develop movement skills
For those under 2 years of age, screen time (e.g. TV, computer/electronic games) is not recommended.
For Children 2-4 years, screen time should be limited to under one hour per day; less is better.
Self Care
Expose your child to different types of activities and environments
Teach your child daily skills, such as eating, hand washing, brushing teeth and dressing
Ensure your child is getting enough sleep each night
1-2 months: 10.5-18 hours/day
3-11 months: 9-12 hours/day
1-3 years: 12-14 hours/day
Role model choosing Food Guide foods 80% of the time
Establish a regular meal and snack schedule
Share family meals at the table with no screens
Education
When reading to your child let him select the books.
Teach your child letters, numbers, colours, animal sounds and body parts.
Medical
Develop good relationships with the healthcare team
Keep a record of your child’s medical history, medication and immunizations
Develop a routine to give medication
Praise your child for taking medication
Discuss medicine problems with your healthcare team
Think about with whom you need to share your child’s medical information
Be honest when explaining a procedure even if it might hurt
Create a my health passport - learn more below.
4-9 years
General
Teach your child to speak up and to express wants and needs
Help your child recognize special talents and interests
Teach your child about good touch/bad touch
Teach your child consequences of behavior
Social/Physical
Expose your child to a variety of activities such as going to the library, playing sports or music
Recognize and encourage your child's increasing need for independence
Gradually assign your child more responsibility at home
Your child should accumulate at least 60 minutes of moderate-to–vigorous intensity physical activity daily (the type of activity that makes you breath harder and start to sweat)
Limit your child to no more than 2 hours per day of recreational screen time (e.g. TV, computer, electronic games) and limit sedentary (motorized) transport, extended sitting and time spent indoors throughout the day.
Self Care
Teach your child personal information including address, phone number and how to call 911
Ensure your child is getting enough sleep each night
4-5 years: 11-13 hours/day
6-9 years: 10-11 hours/day
Role model choosing Food Guide foods 80% of the time
Encourage your child to participate in meal planning and preparation
Share family meals at the table with no screens on
Education
Practice how to read and spell with your child
Support your child by helping with homework when asked
Get involved with your child’s school
Medical
Answer your child’s questions about health truthfully with age appropriate information (talk with your healthcare team for strategies)
Continue to praise your child for taking medicines
Implement a regard system if your child is having difficulty with taking medicines
Talk about medical issues with your child (identify safe and comfortable places to discuss)
Continue to think about who you need to share your child’s health information with
Create a my health passport - learn more below.
10-12 years
General
Talk to your child about healthy eating, physical activity and other healthy lifestyle choices, including the dangers of drug and alcohol use
Increase responsibility for household chores such as tidying room, cleaning dishes
Social/Physical
Encourage your child to have social and recreational time with friends (e.g. hobbies, leisure and physical activities).
Support your child’s participation in community activities without parents where possible.
Your child should accumulate at least 60 minutes of moderate-to–vigorous intensity physical activity daily (the type of activity that makes you breath harder and start to sweat).
Limit your child to no more than 2 hours per day of recreational screen time (e.g. TV, computer, electronic games) and limit sedentary (motorized) transport, extended sitting and time spent indoors throughout the day.
Self Care
Teach your child good grooming and hygiene routines
Encourage your child to choose his own clothes when shopping and dressing
Ensure your child is getting 10-12 hours of enough sleep each night
Role model choosing Food Guide foods 80% of the time
Encourage your child to participate in meal planning and preparation
Share family meals at the table with no screens on
Education
Talk with your child about how friends can have a positive or negative influence
Ask your child what he wants to be when he grows up
Continue to be involved in your child’s school and attend parent-teacher meetings
Encourage your child to be responsible for homework and ask for help when necessary
Medical
Teach your child the names of his medicines
Encourage your child to take medicines with your supervision
Praise your child for taking medicines on time
Work with your healthcare team to inform your child about his health condition
Encourage your child to ask questions and provide your child with hopeful information for the future
Continue to teach your child about the privacy of health information and with whom to discuss
Create a my health passport - learn more below
13-15 years
General
Discuss dating and relationships with someone you trust, such as a parent, friends or your health-care team
Learn how to express your thoughts and questions with your healthcare team
Social/Physical
Be involved in teams, clubs and activities in and outside of school.
Join support groups at your clinic.
Spend time with friends who treat you with respect and who you can trust.
Talk to someone you trust with important issues such as puberty, dating, sex, smoking, drugs and alcohol.
Talk to you healthcare team about questions related to marriage/partnerships and having children.
You should accumulate at least 60 minutes of moderate-to–vigorous intensity physical activity daily (the type of activity that makes you breath harder and start to sweat).
Limit yourself to no more than 2 hours per day of recreational screen time (e.g. TV, computer, electronic games) and limit sedentary (motorized) transport, extended sitting and time spent indoors throughout the day.
Self Care
Set up your own routines such as taking medicines and telling your parents when you are running out
Learn how to do your own laundry and keep your room clean
Learn how to get around on public transportation independently
Ensure you are getting 8.5-9.25 hours of sleep each night
Choose Food Guide foods 80% of the time
Learn how to plan and prepare healthy meals (include 3-4 food groups) and snacks (include 2-3 food groups)
Share family meals at the table with no screens on
Education
Plan ahead for missed school work when visiting the clinic
Talk about career interests and begin to set goals for working, attending college or university
Find volunteer activities or a part-time job to help increase your independence
Medical
Spend part of your medical visit alone with your healthcare team
Increase your knowledge about your medicines (e.g. how they work, their side effects, what happens if you miss a dose, what happens when they are mixed with drugs or alcohol)
Learn how infectious diseases can be passed on and how to protect yourself and others from infections and pregnancy
Talk to your healthcare team about with whom you need to share your medical information
Discuss getting ready to move to adult healthcare before you turn 18 years old
Create a my health passport - learn more below.
16 years and up
General
Review and build on tips listed above for 13 - 15 years old
Begin to think of yourself as a role model
Discuss dating and relationship with someone you trust
Social/Physical
Participate in community programs for young adults that match your interests.
Keep in touch with friends from high school, camps and the clinic.
Maintain physical fitness with regular exercise and a healthy diet.
You should accumulate at least 60 minutes of moderate-to–vigorous intensity physical activity daily (the type of activity that makes you breath harder and start to sweat).
Limit yourself to no more than 2 hours per day of recreational screen time (e.g. TV, computer, electronic games) and limit sedentary (motorized) transport, extended sitting and time spent indoors throughout the day.
Self Care
Ensure you are getting 8.5-9.25 hours of sleep each night.
Choose Food Guide foods 80% of the time.
Plan and prepare healthy meals (include 3-4 food groups) and snacks (include 2-3 food groups).
Practice budgeting and banking skills.
Discuss how to develop positive ways to deal with stress and how to get support from community resources.
Share family meals and meals with friends at the table with no screens on.
Education
Plan for college, university or entering the workforce after high school
Research your medical condition and learn how to find accurate information with help from your healthcare team
Medical
Attend medical visits independently.
Get a summary of your medical history and make a binder.
Discuss your choices for an adult clinic with your health-care team.
Make contact with others who have already graduated to adult clinics.
Learn more about your medicines and be responsible for taking them.
Call to book or cancel your own clinic appointment.
Create a my health passport - learn more below.
Transition readiness checklists
You can download and fill out transition readiness checklists using the MyTransition App. Download free for Apple iOS or Google Android:
My Health Passport is a customized, wallet - size card that gives you instant access to your paediatric medical information. It can be used when you go to a new doctor, visit an emergency room. You can print it for your wallet or email a copy to yourself to save it in your smart phone.
An easy way to discuss important health information with your healthcare team at each visit
How do I use it?
Sentence 1: My age andbriefmedical history Sentence 2:My treatment plan
Sentence 3:My question/concern to talk about during this visit
Example:
"Hi, my name isDaniel. 1.I am 1 5 years old and I have a mitochondrial disorder.
2.I can’t eat orally, so I am fed through myg-tube.
3.I am here today because the skin around my g -tube is sore and red”.
Now it's your turn
Practice with the health -care providers you see the most
Ask if your 3-Sentence Summary is correct and includes all the important information
Now you try!
My Health Passport
My Health Passport is a customized, wallet - size card that gives you instant access to your paediatric medical information. It can be used when you go to a new doctor, visit an emergency room. You can print it for your wallet or email a copy to yourself to save it in your smart phone.
Download the My Transition app for iOS or Android.
Transition timelines for children and youth with complex special needs
Birth to 3 years
Social/Parent-child interactions
Allow your child to develop at his/her own rate - encourage them to do what they can for themselves
Encourage language and communication – the more vocabulary that is understood and expressed, the better
Begin financial planning – set aside money for when your child transitions to adulthood
Find a primary care provider that will care for your child’s special needs and will coordinate care with other doctors and connect you with community providers
Medical
Learn signs and symptoms of health problems and take action early – discuss these problems with your health care provider
Prevent secondary problems that can further limit your child
Begin keeping a record/summary of your child’s early interventions and medical history including conditions, operations, treatments, medications, allergies, hospitalizations, and immunizations
Ensure regular visits with your teen’s community doctor
Education
Start a file for records including assessments, report cards, community certificates, records of completion, etc.
Community Supports
Involve your child and family in community recreational activities that include children with and without special needs
Seek out parent programs for emotional support and networking, especially those including parents with similar experiences
Stay connected to partners, friends, family, faith based organizations, community organizations
Seek professional help when you need it
Services
Obtain a birth certificate and/or proof of citizenship.
Review services listed in section ‘Birth to 3 years’ as your eligibility may have changed.
8-11 years
Social/Parent-child interactions
Assess your child’s knowledge of his/her special needs – encourage them to ask questions during doctor’s visits.
Continue to teach your child self-care skills – encourage all attempts and reward successes.
Encourage hobbies and leisure activities.
Continue to encourage decision-making skills.
Teach your child personal information such as address, phone number, etc.
Encourage regular physical activity.
Teach your child life-skills such as money management and shopping skills – give your child an allowance and allow him/her to choose how to spend it.
Medical
Promote self-advocacy - encourage your child to talk directly with doctors and other health care providers.
Begin networking with other parents who have recently experienced transition planning.
Ensure yearly follow up with your child’s community doctor.
Education
Explore communication systems that support language and literacy
Allow your child to complete homework assignments on their own – let them come to you when they need help
Include your child in meetings about their education through the IEP process
Community Supports
Involve your child in neighborhood and community activities such as Scouts, swimming lessons, story time at the library, etc. – wherever possible, allow them to participate without you
Consider a summer camp program for your child to attend:
Encourage your teen to join teams and clubs at school
Carefully consider your teen’s options for high school education – encourage community based job training and life skills if these activities are appropriate for your teen
If possible, encourage your teen to find a job in the community or to pursue post-secondary education or training.
Support your teen in establishing appropriate living arrangements, including attendant services and supported living options.
If possible, support your teen and let them become the primary decision makers.
Medical
Continue to help your teen advocate for him/herself – if possible, take on the role of coach on the sidelines and let your teen become the decision maker.
Obtain a medical summary report from your teens Primary Care Provider (PCP) or Most Responsible Physician.
With support from your PCP, develop an emergency plan for admissions to hospital after 18 years.
Continue helping your teen keep his/her medical summary up-to-date.
Ensure yearly follow up with your family doctor
Ensure teen’s specialists have started to make referrals to adult care
Get appointment dates for adult specialists prior to being transferred from CHEO
Ensure a review of Advanced Directives documents prior to transition to adult health care
Education
If your teen has an IEP, make sure they receive proper accommodations during their post-secondary education:
When completing your teen’s Ontario Student Assistance Program (OSAP) application (www.osap.gov.on.ca), make sure to indicate that he/she has a disability as they may qualify for the Bursary for Persons with Permanent Disabilities
Adults (18+) living with a disability, may be eligible to receive assistance for income support through the Ontario Disability Support Program (ODSP). Contact ODSP between age of 16-17 years so that assistance is not delayed once 18 years.
Contact ODSP for employment support to help your teen with job search and training.
Contact your local service agency for resources and training opportunities
Apply for the Passport Program (18 years+) (funding for services and supports for adults with a developmental disability.
My Health Passport is a customized, wallet - size card that gives you instant access to your paediatric medical information. It can be used when you go to a new doctor, visit an emergency room. You can print it for your wallet or email a copy to yourself to save it in your smart phone.
This app is in line with the current tool kit at CHEO.
The MyTransition App is a free tool that can be easily accessed and used by the majority of youth with chronic health conditions, in order to support and improve individual transition of care experiences and health outcomes. The software includes the MyHealth 3-Sentence Summary, MyHealth Passport, and TRANSITION-Q as well as a key contact person from the youth’s treating healthcare team to integrate into one’s healthcare. The app provides an easily and readily accessible central location for young adults to track their transition, keep contacts in one place, and improve communication with their healthcare team.
Download free for Apple iOS or Google Android below:
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