Anticipate transitions
Proactively discuss the effects of anticipated transitions with patients, their caregivers, and other members of the health care team.44, 105, 106
Strongly Recommended
Empirical Expert Experiential
Life transitions, such as to adolescence, adulthood, frailty (which can have an early onset), and end of life, are periods of change that are among the most challenging for people with IDD and their caregivers. These are times that require different or greater supports.44, 102-104
Proactively engage supports
Proactively engage psychosocial and spiritual supports (eg, meditation, participation in a support group or faith community) to enhance resilience and coping skills of patients. Refer to a behaviour therapist or psychologist for interventions such as social skills training (see Psychosocial Context and Mental Well-being).108, 109 Promote friendships and positive social networks.110
Strongly Recommended
Empirical Expert Experiential
Changing expectations and roles during transitions can result in emotional, behavioural, social, and spiritual distress due to changes in and loss of previous relationships and supports 103 and limited ability to cope with such causes of distress.107
Develop a transition plan
Collaborate with the individual, caregivers, and involved partners in care to develop a transition plan, comprehensive medical summary, and completed transition readiness checklist (eg, Healthcare Transition Tools and Resources111 or Ask: A health advocacy program112). Regularly review and update the transition plan.113, 114
Strongly Recommended
Empirical Expert
Effective communication and planning contribute to successful transfers of health care during life transitions, such as change of health care providers, systems, and settings of care and support.
Healthcare Transition Tools
The resource Healthcare transition tools and resources for families and caregivers of youth with developmental disabilities, developed by the Developmental Disabilities Primary Care Initiative at Surrey Place (Toronto, 2014) offers helpful examples of transition plans and transition readiness checklists.
Healthcare Transition Guidelines
The Canadian Association of Paediatric Health Centres (CAPHC), National Transitions Community of Practice developed A guideline for transition from paediatric to adult health care for youth with special health care needs: A national approach (2016). These guidelines offer recommendations to enhance and guide the care of youth with special health care needs, including those with intellectual and developmental disabilities, through adolescence into adulthood. The practice recommendations are based on published evidence as well as stakeholder consultation through a consensus building set of surveys.
Learn how to implement these guideline recommendations into your practice from selected articles in the special issue on primary care of adults with intellectual and developmental disabilities in Canadian Family Physician, Vol 64 (suppl 2): S1-78, April 2018:
44. Ryan A, Taggart L, Truesdale-Kennedy M, Slevin E. Issues in caregiving for older people with intellectual disabilities and their ageing family carers: A review and commentary. Int J Older People Nurs. 2014;9(3):217-26.
102. Bhaumik S, Watson J, Barrett M, Raju B, Burton T, Forte J. Transition for teenagers with intellectual disability: Carers’ perspectives. Journal of Policy and Practice in Intellectual Disabilities. 2011;8(1):53-61.
103. Tuffrey-Wijne I, Bernal J, Hubert J, Butler G, Hollins S. Exploring the lived experiences of people with learning disabilities who are dying of cancer. Nurs Times. 2010;106(19):15-8.
104. Baumbusch J, Mayer S, Phinney A, Baumbusch S. Aging together: Caring relations in families of adults with intellectual disabilities. Gerontologist. 2017;57(2):341-7.
105. Ramirez S, Collins S, Muñoz BL. Chapter 10: Transitioning youth to adult health care: A person-centered and culturally competent approach. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health Care for People with Intellectual and Developmental Disabilities Across the Lifespan. Rubin and Crocker 3rd ed. Springer; 2016. p. 111-9.
106. Wood D, Edwards LR, Hennen B. Chapter 20: Health care transition. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health Care for People with Intellectual and Developmental Disabilities Across the Lifespan. Rubin and Crocker 3rd ed. Springer; 2016. p. 219-28.
107. Hartley SL, MacLean Jr. WE. Stressful social interactions experienced by adults with mild intellectual disability. Am J Intellect Dev Disabil. 2009;114(2):71-84.
108. Beail N, Faculties for Intellectual Disabilities of the Royal College of Psychiatrists and the Division of Clinical Psychology, British Psychological Society. Psychological therapies and people who have intellectual disabilities. United Kingdom: The British Psychological Society, Division of Clinical Psychology; 2016.
109. Tinney G, Forde J, Hone L, Flanagan L, Smith M. Safe and social: What does it mean anyway? British Journal of Learning Disabilities. 2015;43(1):55-61.
110. Hall SA. Community involvement of young adults with intellectual disabilities: Their experiences and perspectives on inclusion. Journal of Applied Research in Intellectual Disabilities. 2017;30(5):859-71.
111. DDPCI Developmental Disabilities Primary Care Initiative. DDPCI healthcare transition tools and resources for families and caregivers of youth with developmental disabilities. Toronto, Canada: Surrey Place. 2014. Accessed 2017 Mar 4.
112. Lennox N, Ware R, Carrington S, O’Callaghan M, Williams G, McPherson L, et al. Ask: A health advocacy program for adolescents with an intellectual disability: A cluster randomised controlled trial. BMC Public Health. 2012:750.
113. Canadian Association of Paediatric Health Centres (CAPHC), National Transitions Community of Practice. A guideline for transition from paediatric to adult health care for youth with special health care needs: A national approach [website]. Toronto, ON: Canadian Association of Paediatric Health Centres: Knowledge Exchange Network. 2016. Updated June 2016. Accessed 2017 Nov 6.
114. Kripke CC. Primary care for adolescents with developmental disabilities. Prim Care. 2014;41(3):507-18.
