About 15% to 18% of young people in North America have a chronic health condition. Nearly all of these young people (more than 98%) are expected to reach age 20 and will therefore transition from youth to adult health care services. Mental illness and substance use are also common in children and young people, with about 20% having at least one challenge before they are 18 years old, and up to 70% of these young people needing adult services for problems that persist beyond that age. Further, with advances in medical technology and treatments, more than 90% of young people with complex disabilities are living into adulthood and transitioning from child- and youth-oriented to adult-oriented services.
The transfer to adult care is a critical and vulnerable time for young people and for their parents and caregivers. While learning to manage their own health care, many young people must also change health care providers and adapt to new services, people, and processes. In addition, this period coincides with their transition to adulthood, a challenging time of physical, psychological, and social changes when they may be leaving home for postsecondary school or starting to work. Some young people may feel psychosocial difficulties or disorders such as anxiety and depression during this time, and parents and caregivers may experience distress and uncertainty from their changing roles in their child’s life.
Too often, transition planning revolves around systems and providers, rather than the young person. Young people (and their parents and caregivers, where appropriate) bring important expertise to the discussion, and their involvement in co-designing the transition plan is essential.
The transition process is further complicated by health system barriers, including poor communication and coordination between youth and adult health care providers, a lack of person- and family-centred social supports and resources, and gaps in funding at the age of transition. As a result, transitions to adult health care services are often disorganized and can disrupt the continuity of care. This may lead to poor health outcomes due to preventable lapses in adherence to appropriate care, and a lack of follow-up after missed or delayed care. Either can result in avoidable hospital admissions, emergency department visits, and increased health system costs.
Young people with complex medical conditions, developmental disabilities, and/or intellectual disabilities are particularly vulnerable and at increased risk of worsening health. They often experience multiple transitions in services, have difficulty accessing appropriately trained adult health care providers, and have limited information and resources to support them and their caregivers. Interviews conducted at six children’s treatment centres in Ontario found that young people with complex physical disabilities, and their parents and caregivers, reported ongoing challenges and negative impacts of the transition to adult services. Among these were a lack of access to health services (physician specialists and other health care professionals), a lack of knowledge by health care professionals, a lack of information provided, and uncertainty regarding the transition process. Respondents suggested that more extensive information, support, and collaboration were needed throughout the transition process.
Many young people with mental health care needs or substance use, and their caregivers, have also reported negative experiences transitioning from child and youth mental health services to community or adult mental health and addictions services. Among these challenges are limited information about care in the community or about the adult mental health and addictions system, being left out of the transition discussions, not feeling prepared for the transition, and receiving care that was poorly planned and executed. In addition, service gaps are a common problem for young people transitioning to adult mental health services. Currently, community‐based child and youth mental health treatment centres in Ontario are only funded to provide services for young people up to the age of 18. Adult mental health systems often function separately from services for children and youth, and with marked differences in their funding and approach to care. As a result, up to 50% of young people disengage from mental health and addictions care during the transition to adult care, leading to potentially avoidable negative health and social outcomes, poor use of health care resources, and unnecessary costs to the system.
Young people living in rural, remote, and Northern communities may face additional challenges to accessing appropriate care when transitioning to adult health services compared with their urban peers. These geographical barriers—which include the need to travel to large urban health care centres and hospitals, the time and financial resources required to do so, and a lack of culturally relevant services—can further worsen continuity of care.
Living in stressful social and economic conditions can also impact a young person’s overall health and well-being as they transition from youth-oriented to adult services. Such stresses include social stigma, discrimination, and a lack of access to post-secondary education, employment, income, and housing. This is especially important for Indigenous, Black and racialized, and newcomer children and young people who may have experienced intergenerational or present-day traumas and continue to experience systemic racism. A lack of trauma-informed practices (see Appendix 4, Guiding Principles) has been identified as a main barrier for young people in establishing supportive long-term relationships with caregivers and front-line service providers.
Young people in care in the child welfare system who have reached the age of majority (age 18 or 19, depending on where they live) face additional barriers in accessing the transition supports and services they need. These young people experience higher rates of homelessness, unemployment, poverty, mental illness, post-traumatic stress, and substance use, and lower levels of education, compared with their peers who were not in care. These systemic inequities result in harm to young people and lead to negative outcomes. Some groups—including Indigenous, Black and racialized, and 2SLGBTQ+ youth, and young people with disabilities—are overrepresented in the child welfare system and therefore are at a higher risk of experiencing challenges and poorer health outcomes as they transition into adulthood.
In consulting with young people with lived experience in care to inform Ontario’s Child Welfare Redesign Strategy, the Ministry of Children, Community and Social Services learned of the many challenges they face navigating the health system as they transition to adulthood. Important to these young people was having access to a primary care provider and mental health care, as well as strong advocacy skills to seek help and support. Young people leaving care have also reported that developing and nurturing meaningful, supportive long-term relationships, including with service providers such as social workers, can act as a bridge during these difficult times of transition.
Successful transitions in health care for young people are critical for their lifelong well-being. Enhancing the transition process from child- and youth-oriented services to adult-oriented services has the potential to positively impact:
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Health outcomes and quality of life
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The experience for young people and their parents and caregivers
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The quality of health care provided
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Financial and other costs to young people, parents and caregivers, and the health care system
This quality standard includes six quality statements that address areas identified by the Transitions From Youth to Adult Health Care Services Quality Standard Advisory Committee as having high potential to improve transitions in care for young people in Ontario.