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Lost in transition: the gap between child and adult mental health services


I first met “Alice” during my pediatric residency. She is a shy and articulate 17 year old girl, who has been struggling with depression since her early teen years. Over the past several years, she has been seeing a counsellor at her local pediatric mental health centre. She has learned to trust and rely on her clinical team during her times of struggle.

But as her 18th birthday approaches, this relationship is set to change. Like so many pediatric centres, Alice’s current treatment centre is only able to care for children. Therefore, on her 18th birthday, Alice’s care will be transitioned to an adult centre. For Alice, this transition is one laced with hesitancy, worry and anxiety. Not only will she be leaving behind her trusted clinical team, but also the disjointed nature of the pediatric and adult mental health sectors means that she might not be eligible for the same services as an adult. And Alice is not alone. For many adolescents, this period of transition can be overwhelming and for some children, so distressing and frustrating that they do not  seek, or simply stop, medical treatment.

It is estimated that 1.04 million young people aged nine to 19 are living with a mental illness in Canada. That represents nearly one in four children and youth. Yet, a recent study shows that in Ontario, only one in six children received the specialized treatment they require. The lack of adequate treatment can have lifelong consequences, because children and youth who experience a mental illness are at a much higher risk of experiencing a mental illness as adults.  This risk is increased if children are not able to receive early and appropriate treatment.

The transition from childhood to adult life is a natural developmental process. But for adolescents with mental health conditions this can be a difficult time. Adolescence and young adulthood are high risk periods for the development of mental illness. In fact, 70% of mental illnesses arise in childhood or adolescence. Furthermore, for those with mental illness, this period is one where more serious symptoms, such as psychosis, can arise or worsen. Adolescents can also face a number of other barriers that can influence the impact of their illness including homelessness, lack of education, barriers to employment, learning disabilities and drug use.

This is compounded by the fact that adolescents are also moving away from their established and trusted circle of care providers to another, often completely different treatment program and set of health care providers. Thus, in an illness where continuity and stability is important, this transition period can create the perfect storm.

There are increasing movements within pediatric medicine towards more structured and gradual transition periods for patients with chronic or complex medical histories. But the same movement is not as apparent within mental health, and where efforts have started they are often in their infancy.

In mental health, perhaps more than other medical conditions, continuity of care is imperative. Fortunately, unlike pediatricians, child psychiatrists are trained and licensed to provide treatment to both children and adults. So theoretically they can provide ongoing care to adolescents and young adults. In reality, however, this is often not possible because psychiatrists who practice in a pediatric facility may only be allowed to see children under the age of 18.  This same limitation may also exist for other clinicians who work with this population, such as social workers and counsellors.

However, even if one eliminates this barrier, there are many other factors that make this transition period challenging for youth with mental illness. For example, pediatric and adult services often have different practice patterns. While pediatric practices tend to focus on the children as well as their families, there is a movement away from this in adult services, where the emphasis is instead placed on the individual patient. Thus for teenagers who are not accustomed to having sole decision-making power in their medical care, this change in practice culture can be daunting. Furthermore, the decreased emphasis on family involvement in decision making in adult systems may leave families feeling less involved in their children’s care. Without family collaboration, teens are potentially at increased risk for disengagement from their medical team.

Overall, the impact of poor transition can be grave. Up to 60% of youths with ongoing mental health needs can disengage from their medical and community services as a result of poor transitions. And it is the children at greatest risk who are the most likely to withdraw from treatment.

There is no simple answer for fixing the challenges faced by teens during this transition period. But reworking the complex and fragmented social and medical system that provides mental health services is one place to start. Within Ontario, for example, mental health services are shared among a number of ministries and the distribution of services changes when a patient turns 18 and in some cases 21. There is also no cross talk between ministries. Thus, when children enter the adult system, they often are required to begin the process of applying for services from the start. Further adding to the frustration is the fact that for patients with established pediatric services, there are no guarantees that they will receive the same level of services from the adult sector.  In the end, families are often left scrambling to find their children the appropriate services they require.

There are changes afoot within the mental health sector, as more and more become aware of the true impact of mental illness of our youth. But as we move forward, it will be important to remember that the even within the chronically underserviced mental health system, the importance of transitions can’t be ignored.

Meera Rayar is a clinical fellow in Paediatric Hematology/Oncology at the Hospital for Sick Children and a Masters of Science candidate at the Institute of Health Policy, Management and Evaluation at the University of Toronto.

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5 comments

  1. John Smith

    You should do a little more research. Here in Halton we have had a Cross Sectoral, Systems Integration Approach to transitioning youth into the adult mental health/addiction system for many years (TAY). This includes both the youth and adult agencies, LHIN, MCYS, United Way and other community partners. We have both a Steering Committee to oversee the initiative as well as community service resolution tables which addresses the unique individual needs of youth.

    Many communities throughout Ontario have adopted this TAY approach.

    • Jov

      Hi John
      We have a lot non -functioning -money -draining systems under very attractive names. It seems that Canadians are so good at spending others’ money and taking faked and hypocritical postures.
      It’s not the names but the quality of provided services.

      Jov

  2. Christopher Canning

    Thank you for advancing the conversation about the complex mental health needs of the emerging adult population in Canada. As you outline, the transition from adolescence to early adulthood is met with all sorts of complex developmental, social, and neurological processes and changes. When young people face the transition from adolescent mental health services to adult services, many disengage entirely due to changing treatment programs, lack of support from families or peers, lack of specialized services to address the onset of severe mental illness, or because of other social and system changes happening simultaneously (such as moving from high school to college, university, or the workforce). The fact that provincial ministries lack a formalized communication plan to ensure youth are accounted for across system transitions only complicates the needs of this vulnerable population.

    For a number of years now, emerging adults, their families, service providers, champions in mental health, and the national media have been profiling the shortcomings of existing services for emerging adults in Canada. Many provincial ministries are starting to have conversations about how to improve communication between mental health services delivered across programs and agencies. Some provincial mental health strategies identify transition-aged youth/emerging adults as a priority population, as does the Mental Health Commission of Canada’s (MHCC) Mental Health Strategy for Canada. Despite these promising few first steps, there is a lot of work yet to be done.

    With the hopes of making concrete recommendations to improve mental health services for youth transitioning from adolescent to adult mental health services, the MHCC is hosting the National consensus conference on the mental health of emerging adults: Making transitions a priority in Canada – hosted in Ottawa from November 2-4, 2015. We encourage everyone to visit our site and express an interest in attending: http://www.mentalhealthcommission.ca/English/consensus-conference-mental-health-emerging-adults-making-transitions-priority-canada

    Thank you for adding to this important conversation. We hope the MHCC’s national conference will help to advance the emerging adult agenda even further. We agree that there is an urgent need to develop seamless pathways to and between mental health services in all areas of Canada.

    Christopher Canning and Jen Dykxhoorn
    Knowledge Exchange Centre
    Mental Health Commission of Canada

  3. Kim Moran, CEO of Children's Mental Health Ontario

    Children’s Mental Health Ontario, on behalf of our member agencies, agrees wholeheartedly that the transition from child and youth mental health services to adult mental health services is particularly challenging for young people.

    There is a significant service gap that results in many young people falling through the cracks, often with serious consequences. Equivalent treatment options for adolescents with mental health challenges are not always available in the adult mental health system, and wait lists for services in the adult sector can disrupt vital treatment progress. Additionally, different access mechanisms and varying assessment and treatment modalities between the two systems can make the transition extremely difficult, effecting outcomes for youth and families.

    It is also true that in Ontario work needs to be done to clarify the roles of the many service providers for child and youth mental health including hospitals, primary health care and children’s mental health centres. Clarifying the respective roles of key players within the children’s mental health system will help create smoother and more effective transitions to the adult system.

    Additionally, changing mental health counsellors during this sensitive time in a youth’s life can lead to very serious negative consequences. Getting to the root of a mental health problem takes time, and building rapport is an essential component of care, especially for children and youth. As a result, many children’s mental health centres in Ontario provide treatment and support to youth aged 18 to 25, as they are transitioning to the adult system. Given that government funding envelopes only cover youth 18 and under, children’s mental health centres often must patch funding together to ensure that their clients can properly and safely transition to the adult system and maintain the progress they have already made. The need for urgent action is clear. Further investments in transitional supports for service providers are required to improve coordination and integration between the child and adult mental health systems to make sure that no youth is left behind. We are encouraged by the government’s emphasis on this important population with the Premier’s mandate letters. In 2013, CMHO published a position statement titled Easing Transitions for Children, Youth and Emerging Adults. Our recommendations include, among others, appropriate financial support for agencies at all key transition points.

    Furthermore, investments to decrease wait times for child and youth mental health treatment are desperately needed. CMHO’s 2015 Report Card on Child and Youth Mental Health shows that more than 6,000 kids with significant mental health issues wait over a year for services at children’s mental health centres. Increased support for the sector would help children and youth receive the support they need to treat and effectively manage their mental health issues, when symptoms first arise and to help better prepare them for the difficult transition years. As we know, effective and timely treatment of mental health issues can substantially improve short and long-term outcomes, helping people to live long and healthy lives.

    Children’s Mental Health Ontario supports the work being done by the Mental Health Commission of Canada on youth transitions and is involved in MHCC’s 2015 Youth Transitions Consensus Conference. We are confident that this conference will help influence important future policy decisions affecting youth transitions.

    Kimberly Moran
    President and CEO
    Children’s Mental Health Ontario

    Children’s Mental Health Ontario represents nearly 100 accredited children’s mental health centres across the province dedicated to improving the quality of care for our most vulnerable children and youth. CMHO advocates for an integrated system of care that includes psychiatrists, hospitals, children’s mental health centres, schools and, when necessary, child welfare agencies to provide the treatment children and youth need, when they need it. http://www.kidsmentalhealth.ca

  4. Ted Ball

    We now know that because the provincial government has decided to significantly underfund children’s community mental health services, the outcome is a 45% increase in emergency room visits to Ontario hospitals, and a 37% increase in hospitalization rates of children with mental illness. So our underfunding strategy is costing us a fortune! Any chance we could learn from this? Now there is a healthy debate someone should sponsor!

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