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

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

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

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

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):570-576.

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)

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

Shared Management Model Kieckhefer & Trahms 2000

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

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!

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) http://www.npsf.org/askme3/large_scale_information.php

Good2Go:Tools & Resources Timelines Readiness Checklist Transition Clinics & Education Days MyHealth 3-Sentence Summary MyHealth Passport MyEducation Passport Learning Resources Graduation Certificates http://www.sickkids.ca/Good2Go/

Timelines Ready, Set… Good 2 Go! ()

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

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

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

Readiness Checklist

3-Sentence Summary

MyHealth Passport

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

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 http://www.sickkids.ca/Good2Go/For-Youth-and-Families/Transition-Tools/Planning-Your-Future/index.html

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 http://www.sickkids.ca/Good2Go/For-Youth-and-Families/Transition-Tools/Planning-Your-Future/index.html

Graduation certificate