1. Transition The planning required to live your best life
Stacy Hewson, MSc, MSc, CGC, CCGC
Genetic Counsellor
Department of Genetic Counselling

2. Definition of Healthcare Transition
“The purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.”
Society for Adolescent Medicine
Carol Nelson 2010

3. Transition to adult care for youth with special healthcare needs Canadian Paediatric Society – Position Statement Feb 2016
Ongoing process (diagnosis - sometime after transfer)
Appropriate resources and educational materials
Youth focused within the context of the family
Supports should be provided for family members
Youth’s pace
Developmentally appropriate care
Information re: condition, sexual health
Communication and negotiation training for youth
Individual counselling, psychoeducational groups, posters and checklists for staff patients and parents, joint transition clinics and web based tools

4. Good 2 Go Transition Program
Good2Go: Goals for youth
Advocate for themselves
Maintain their health
Effectively use the adult system
KHUSH
Program Goal: To prepare all youth with chronic health conditions and previous significant health conditions to leave SickKids by the age of 18 years with the skills to:
Advocate for themselves (or through others)
Maintain health-promoting behaviors
Utilize adult healthcare services appropriately and successfully
Transition from a family-centred to patient-centred care facility

5. Transition vs. Transfer
Transition is a process of getting ready for adult life through building various skills
Transfer is a one time event
Good 2 Go Transition Work
Pediatric Health Care Adult Health Care
Blum, R.W., Garell, D., Hodgman, C., Jorissen, T., Okinow, N., Orr, D., & Slap, G. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. Journal of Adolescent Health 1993;14(7):

6. What’s All the Fuss About?
Teens may experience challenges in the adult system
Increased risk for:
Health care drop-out
Not following treatment and follow up plans
Increases in ER visits and hospitalizations
(E.g., McDonagh, 2007; Watson, 2005; Yeung et al, 2008)

7. Differences between Pediatrics and Adult Care
Pediatric care
Adult care
Family focused
Patient focused
Developmentally appropriate with significant parental involvement
Autonomous independent consumer skills required
Multidisciplinary team
Few interdisciplinary resources
CPS position statement 2007 – Transition

8. Shared Management Model
Kieckhefer & Trahms 2000

9. How can parents help?
Solo interactions: Support your teen to see health care staff without you
Three sentence health summary: Encourage your teen to communicate directly with the staff
Teach your teen how to manage their health care needs: example provide opportunity to learn about medications- e.g. why they take them, how to get a refill

10. How can parents help? Help your teen to understand:
the effect of the health condition on his/her present and future health
Try not to be a ‘helicopter parent’
Advocate!

11. Strategy: Help them learn to ask key questions
What is my main problem?
What do I need to do?
Why is it important for me to do this?
(Health Literacy 2010)

12. Good2Go:Tools & Resources
Timelines
Readiness Checklist
Transition Clinics & Education Days
MyHealth 3-Sentence Summary
MyHealth Passport
MyEducation Passport
Learning Resources
Graduation Certificates

13. Timelines
Ready, Set… Good 2 Go! ()

14. Timelines For parents For teens Birth – 3y 4-7 years 8-11 years
16 and up
General
Social
Self Care
Education
Medical

15. For parents
Birth to 3 years old
4 to 7 years old
8 to 11 years old

16. For teens/youth
12 to 15 years old
16 years and up

17. Readiness Checklist

19. 3-Sentence Summary

20. MyHealth Passport

21. MyEducation passport
used to help you to easily communicate your educational strengths, challenges and needs to teachers
also helps makes results of psycho-educational assessment results portable 
create a MyEducation Passport with a professional such as a psychologist, teacher or social worker

22. guidelines for health care providers
Planning your future:
guidelines for health care providers
Academic Supports for Youth with Chronic Health Conditions and Disabilities
Alternative Pathways to Graduating High School
High School Diploma Requirements
Post-Secondary School: Applying
Post-Secondary School: Funding
Post-Secondary School: Accommodations
Post-Secondary School: Attendant Services
Employment Programs for Youth with Chronic Health Conditions and Disabilities
Youth Job Programs: Year-round or Summer
ODSP Employment Supports
Volunteering

23. guidelines for health care providers
Planning your future:
guidelines for health care providers
Finances and Financial Planning for Young People with Disabilities
Ontario Disability Support Program (ODSP): Eligibility Criteria
Ontario Disability Support Program (ODSP): How to Apply
Disability Tax Credit
Registered Disability Savings Plan
Henson Trust
Supports for Adults with Developmental Disabilities:
Developmental Services Ontario
Respite Care for Adults with Developmental Disabilities
Inclusive Education at Ontario Colleges
Supports for Adults with Physical Disabilities
Support Services for Adults with Physical Disabilities
Mobility Devices for Adults with Physical Disabilities
Wheelchair Accessible Transportation and Vehicles
Recreation Options for Adults with Physical Disabilities

24. Graduation certificate