Reaching for the Top: A Report by the Advisor on Healthy Children & Youth

8 Mental Health and Chronic Illness

I. Mental Health

The 2006 Report of the Standing Senate Committee on Social Affairs, Science and Technology entitled "Out of the Shadows at Last: Transforming Mental Health, Mental Illness and Addiction Services in Canada" (Kirby Report on Mental Health) was a landmark report on mental health and addictions in Canada. A primary recommendation of this standing committee report was the establishment of a mental health commission. In Canada's 2007 federal Budget, the Mental Health Commission of Canada was established and is chaired by the Honourable Michael Kirby. This commission has a ten-year mandate, and has been tasked with making recommendations on mental health issues to the Government of Canada.

Due to the substantive and comprehensive mandate of the Mental Health Commission of Canada, and the need for an integrated approach for child and youth mental health, the recommendations within this section will be provided as an official submission to the new Commission. These recommendations should provide useful context to the Commission, and should be considered in the context of the work they are doing or are going to complete, on child and youth mental health.

What Canadians Said

The 2002 report entitled "A Report on Mental Illness in Canada" describes mental illnesses as being "...characterized by alterations in thinking, mood or behaviour (or some combination thereof) associated with significant distress and impaired functioning over an extended period of time. The symptoms of mental illness vary from mild to severe, depending on the type of mental illness, the individual, the family and the socio-economic environment."¹³¹

Canadian children and youth are greatly impacted by mental illness. During the consultation process, we heard that the mental health issues impacting them are substantive. These issues can range from the impact of bullying, mental stress over exams and getting into good schools, to psychiatric illnesses such as schizophrenia and bi-polar disorder requiring the intervention of health care services.

Mental Health and Substance Abuse Indicators

In order to best assess the status of mental health and substance abuse among children and youth, appropriate indicators that are utilized across all governmental jurisdictions and NGOs must be determined and consistently measured among the providers. The child and youth mental health indicators listed below are a base from which to build:

• Prevalence of smoking among children and youth 12-18 years old;
• Proportion of children and youth 12-18 who consumed alcohol in the last 12 months;
• Prevalence of substance abuse among children and youth 12-18 years old;
• Suicide rate among children and youth, particularly among aboriginal Canadians;
• Indicators for children with developmental disabilities (e.g. autism and other pervasive developmental disorders); and,
• Percentage of young children:
  • Displaying behaviours associated with emotional problem-anxiety/ hyperactivity-inattention/physical aggression - conduct problems; and,
  • Displaying age appropriate personal-social behaviour.

The consistent evaluation and measurement of mental health and substance abuse indicators will be invaluable in helping to determine interventions that work.

Challenges and Issues

Children and Youth Mental Health Issues¹³²

• Number of Canadian children and youth affected by mental illness at any given point in time: 15% or 1.2 million
• Percentage of adolescents (aged 15-24) who report a mental illness: 18%

Anxiety

• Most common mental health problem among children and youth is anxiety: 6.5%
• Age with the highest rate of anxiety symptoms: 20-29 years of age

Depression

• Age of onset for depression: Adolescence
• Age with highest rate of depression symptoms: under 20 years of age

Schizophrenia

• Schizophrenia - age of onset 15 - 25 years of age - affects: 1% of population
• Chance of developing schizophrenia if one sibling and one parent have schizophrenia 10-15%
• Chance of developing schizophrenia if both parents have it 50%
• Chance of developing schizophrenia if identical twin has it: 50%
• Percentage of schizophrenics that attempt suicide 40-60%
• Likelihood of death by suicide 15 - 20 times greater than general population
• Percentage who die by suicide: 10%

Bi-polar Disorder

• Age of onset: Adolescents: 1% of population
• Mortality rate, including suicide: 2 to 3 times higher than the general population

Suicide

• Percentage of all deaths among Canadians aged 15 - 24 suicide: 24%
• Age with the highest rate of depression symptoms: under 20 years of age
• Age of onset of depression: Adolescence

Eating Disorders

• Age where there is the highest rate of hospitalization: 15 - 19 years of age
• Percentage affected: 3% of females, 0.3% of males
• Disorder with the highest mortality rate of all mental illnesses - 10 - 20% die from the effects.
• Rate of hospitalization since 1987 for Canadian girls under 15: 34%
• Rate of hospitalization since 1987 for women aged 15 - 24: 29%

Substance Abuse

• The least common problem: substance abuse 0.8%
• Percentage of young adults 15 -24 with a mental illness or substance abuse problem: 18%
  Percentage of youth prostitutes who do not use alcohol or drugs: 8%
• Percentage of youth prostitutes who become prostitutes to earn money for drugs: 44%

Eighty percent (80%) of all psychiatric disorders emerge in adolescence, and are the single most common illness that onset in the adolescent age group.¹³³ Research indicates that at any given time, approximately one in seven (15 percent) of Canadian children and youth under the age of 19 are likely to have a serious mental disorder that impacts their development and ability to participate in common adolescent activities.¹³⁴ Unfortunately, only one in five Canadian children who need mental health services currently receive them.¹³⁵

Greater Pressures at a Younger Age

Our children and youth are experiencing increasing levels of pressure and stress at a younger and younger age. A greater number of Canadian children and youth are exhibiting signs of mental distress as a result of anxiety, bullying in and out of school, low self-esteem and insecurity. They are distinct from children who have more serious mental health disorders, which could include, but are not limited to, attention deficit hyper-activity disorder, addiction, and autism. Children and youth with mental distress and mental disorders are often identified and referred into the system too late - their problems getting worse with time. Fortunately, with the appropriate investments and access to treatment, it is estimated that 70% of childhood cases of mental health problems can be solved through early diagnosis and interventions. Early interventions can help these children and youth to lead normal productive healthy lives and save the costs that would otherwise be incurred by providing them with social services throughout their adult lives.

Little Uniformity Across Canada

There is little uniformity in Canada in the delivery of paediatric mental health programs and services. In fact, the majority of provinces and territories do not have child and youth mental health plans.¹³⁶ These service gaps are exacerbated by a shortage of child and youth mental health service providers. The result is situations where children and youth are not able to access the mental health services they desperately need. Untreated mental illnesses in children and youth eventually cost Canadians exponentially more in long-term health care and social service system costs than they would if early interventional services for screening and diagnosis were to be applied when problems are initially recognized.

According to the Canadian Institute for Heath Information, "Differences in the provincial and territorial rates of separation and lengths of stay hint at the systemic differences that exist for the provision of hospital mental health services from a pan-Canadian perspective. The regional level data for these same indices give an idea of the intra-jurisdictional variations that exist for hospital mental health services."¹³⁷

This inter-jurisdictional variation exists not only at the hospital service level, but also at the community services level. This variability and lack of access substantially contributes to the complexity, and challenges of accessing the mental health system within Canada.

National Mental Health Strategy

Monitoring the state of mental health and substance abuse among Canada's children and youth is exceptionally important. The mental and intellectual well being of our children is extremely important for the social foundation and economy of the country.

Canada is the only country among the G8 nations that has not formally adopted a national mental health strategy, although responsibility for developing such a strategy is part of the mandate of the Mental Health Commission of Canada. This National Mental Health Strategy must include a focus on child and youth mental health issues, as mental health problems among children and youth are predicted to increase by 50% by the year 2020.¹³⁸

Role of the Federal Government: Recommended Action

There have been numerous panels and parliamentary committees on mental health issues that have discussed paediatric mental health services. The time has come to take action and implement best practice solutions across the country in a co-ordinated manner so that every Canadian child and adolescent has access to high quality, professional, mental health services.

As noted, the urgent first step is the need for the development of a National Mental Health strategy that includes a focus on child and youth mental health issues.

The public consultations undertaken for this Report uncovered six core areas where immediate action is required to strengthen the approach currently taken to address the mental health issues of children and youth:

1. Creating a national focus on child and youth mental health issues
2. Ensuring appropriate access to care, at multiple levels
3. Building health human resources capacity in paediatric mental health
4. Creating a research focus on paediatric mental health
5. Public education to increase awareness and reduce stigma
6. The need to effectively interveneand reduce suicide rates among Canadian youth

1. Creating a National focus on child and youth mental health issues

To address the mental health issues facing Canadian children and youth, it is recommended that the Public Health Agency of Canada's Centres of Excellence for Children's Wellbeing Program transition to include a National Centre of Excellence on Mental Health and Substance Abuse Among Children and Youth. The six core areas that were outlined above should be the primary responsibility of this Centre. It should focus on increasing knowledge translation, facilitating collaboration, developing an advertising and communications program, and ensuring the implementation of specific initiatives that will substantially impact the mental health outcomes of Canadian children and youth. In light of the progress which has already been made in these areas at the Ontario Provincial Centre of Excellence in Child and Youth Mental Health, progress in this area would be achieved most quickly by making this Centre the National Centre of Excellence on Mental Health and Substance Abuse Among Children and Youth.

2. Ensuring Appropriate Access to Care

Accessing paediatric mental health services in Canada is complex, confusing and frustrating for parents and patients receiving the services, and for the health care professionals delivering the services. Parents do not know where to go to get help for their children and adolescents. It is not a linear process; anyone can refer a child to a variety of different mental health providers (e.g. psychiatrist, social worker, psychologist) who may, or may not, be the appropriate person to deliver that level of care. Children and youth can also be referred privately, to community-based entities, or to hospitals, and thus funding from different sources are used to pay for mental health services.

Even within governments, children and youth mental health services fall within the purview of different departments and ministries including health, community and social services, child and youth services and education, depending on the provinces or territory.

a. Expert Panel on Mental Health Access

In order to immediately facilitate the creation of a National Paediatric Mental Health Access Strategy, it is recommended that the Child and Youth Advisory Committee of the Mental Health Commission of Canada establish an Expert Panel to focus on mental health access for children and youth in the first six months of their mandate. The panel should include a maximum of five people, including at least one representative from an NGO. The panel would provide specific recommendations to Canada's Minister of Health, the Mental Health Commission of Canada, and provincial and territorial leaders on the best access strategy; what it should include, how it should be implemented and what systems should be evolved or created so that Canada is looked to as the benchmark best practice jurisdiction internationally in terms of access to children's mental health services.

b. Wait Time Strategy

Wait time strategies have been successfully developed and implemented in many health fields. They have been a useful tool for driving change into the Canadian health care system.

The creation of a wait time strategy for paediatric mental health will create system synergy and transparency. It is recommended that similar to the Paediatric Surgery Wait Time Initiative, a National "Wait Time Strategy for Child and Youth Mental Health Services" be developed in the next twelve months. Best practices from other wait time strategies can be utilized when developing appropriate processes for program administration and data collection for this child and youth mental health wait time strategy. Developing this strategy should be the first task of the Expert Panel.

c. Mental Health Human Resources

It has long been recognized that there are significant health human resource challenges in the mental health system, with particular gaps in remote and rural areas. The Kirby Report on Mental Health makes excellent recommendations including ensuring the seamless transition from youth to adult mental health services, the increased use of tele-psychiatry services, and the use of standardized, evidence-based group therapies, where clinically appropriate, to reduce existing waiting lists for services.

With respect to improving the access to child and youth mental health services, tele-psychiatry and tele-social work service consultants from all the mental health disciplines could provide a mechanism to reach those individuals in remote and rural areas on a regular basis and in a meaningful way.

Because of the lack of specialists and other ancillary health care providers in the field of mental health in Northern remote areas, it is recommended that a 'fly-in' mental health human resources pool be created. Functioning as a dedicated locum program, it should include a roster of social workers, therapists, physicians, and psychiatrists who are specifically trained in child and youth mental health practices and who are willing to provide assessments and help train local practitioners in best practices. This service will particularly benefit the Northern Territories and remote aboriginal communities.

d. Mental Health in the Community

The Kirby Report on Mental Health also correctly identified the need - at all levels - for departments and ministries of health, education, social services, and justice to work together to deliver integrated models of service delivery and access to mental health services.

A number of jurisdictions are working towards using an Integrated Service Delivery model for the delivery of youth mental health services.¹³⁹ There is a need for a greater number of jurisdictions to integrate service delivery. This takes advantage of schools as sites or hubs for programs and services, and uses the expertise of different sectors to deliver the services within the school. This will locate the services where children and youth are already spending their time, and use existing infrastructure during off-use hours.

In addition, appropriate community mental health resources must be in place for our children and youth. The 2004 Canadian Mental Health Associations booklet, "Handle with Care: Strategies for Promoting the Mental Health of Young Children in Community-Based Child Care," created in conjunction with the Hincks-Dellcrest Centre and the Gail Appel Institute, recognized that Canadian children are placed in child-care settings at a younger age. They correctly identified such settings as good locations for best practice mental health promotion activities, given the large paediatric population enrolled.¹⁴⁰ The brochure presents a survey of best practices and recommends a national approach to ensure consistency of resource availability across Canada.

As mentioned previously, it is difficult for parents to access mental health research and best practices, and specifically, to know what mental health services are available for their children and youth. Mental Health Resource Lists map out the existing landscape of mental health research and services. But unfortunately, there is no consistent approach to these lists in Canada. A good start has been made by Dr. Michael Cheng (Children's Hospital of Eastern Ontario) and Ms. Amy Martin (Crossroads Children's Centre) through their  e-mental health website. It is recommended that this Canadian best practice be funded to expand this portal service across Canada.

Through better access to quality mental health information service and research information, patients and parents will be able to better identify which services they need. Clinicians including psychiatrists, social workers, psychologists and other health care providers will be able to better determine appropriate management and treatments as well.

e. Refugee children

The federal government has responsibility for the delivery of health care services for refugee children for 90 days to one year after their arrival in Canada. These children are often significantly traumatized. In addition to requiring basic necessities of housing, food and education, many will experience post-traumatic stress from leaving a war-torn country and/or destitute poverty. The mental health services provided to these children require a special level of attention and care.

Government departments including Health Canada, the Public Health Agency of Canada, and Citizenship and Immigration Canada need to work cooperatively to find creative solutions that will prevent these children from "falling through system cracks". It is recommended that each refugee child aged 16 and under receive a mental health assessment with their physical assessment upon entering Canada, so they can immediately access mental health services if required.

3. Building health human resources capacity in paediatric mental health

Canada is experiencing a shortage of mental health specialists and health care providers that are trained to cover a wide variety of services. All governments in Canada need to immediately work with NGOs, academic, and health care institutions to increase the training capacity of the entire spectrum of mental health professionals and ensure that this training includes specific clinical instruction on child and youth mental health issues. While building this additional capacity should begin as soon as possible, it is important to recognize that this is a long-term solution.

Additionally, consideration should be given to developing innovative training initiatives that can enhance the capacity of all providers (professionals and non-professionals) to deliver appropriate mental health services consistent with their role in the health care system. Such needs driven, competency based models have the potential to substantially improve the child and youth mental health service delivery capacity while simultaneously encouraging the delivery of mental health care within the health care system rather than through current vertical mental health system models.

This capacity needs to be augmented in primary care settings. Thus, it is recommended that the Royal College of Physicians and Surgeons, the College of Nurses, and the College of Family Physicians, among others, create specific educational sections addressing child and youth mental health. With the Health Policy Branch at Health Canada, they should be encouraged to develop and deliver innovative training programs using a needs driven, competencies based approach that could be made available to both formal and informal providers.

In addition to the need for more paediatric mental health providers, there are additional challenges when it comes to resource allocation. Many paediatric mental health experts are not able to meet their full potential, while others are far too qualified for the work that they are doing. This leads to inequities in resource management where patients have challenges accessing the appropriate level of health care professional. We need to create a system that effectively maximizes the contribution of all health care providers in this area.¹⁴¹

Canada is fortunate in that we have a wealth of individuals who are just outside the health care system but who interact with children daily. It is recommended that a national best practice program on identifying children in distress be developed to educate people who have regular contact with children. For example, an NGO-trainer, teacher or child care provider could be trained to identify children in distress and work in a collaborative way with traditional health care professionals such as a social worker or psychiatrist. The goal is to focus individuals at their level of expertise and scope of training in order to maximize access to all health care professionals.

4. Creating a research focus on paediatric mental health

Surveillance and research on Canadian paediatric mental health practices is lacking. Greater partnerships between governments, academic and research institutes, private foundations, community groups and the private sector need to be encouraged in order to support and build research capacity. The Norlien Foundation based in Calgary, Alberta provides a best practice example. It has been working with academic and government partners to identify start-up funding to support the creation of a Mental Health Research Chair program. Ideally, additional partnerships of this type will develop, thereby helping more children to get help.

5. Public Education to Increase Awareness and Reduce Stigma

In Canada, there continues to be a social stigma attached to mental illness, especially with and among children and youth. Unfortunately, we have all witnessed the inappropriate and mean comments from children on the playground commenting on an intellectually-challenged or mentally-ill classmate.

According to the Canadian Mental Health Association, "Because of this stigma, many people hesitate to get help for a mental health problem for fear of being looked down upon. It is unfortunate that this happens because effective treatment exists for many mental illnesses. Worse, the stigma experienced by children with a mental illness can be more destructive than the illness itself."¹⁴² For years, individuals experiencing mental distress and disorders were kept in the background of Canada's health care system and the public discourse. Recently, national attention through vehicles such as the Kirby Report on Mental Health and prominent Canadians' comments are helping to foster public dialogue. However, to a large degree mental illness continues to be an area where there is much misinformation and a societal unwillingness to have an open and honest discussion about what needs to be improved.

Thus, in an effort to inform parents and the public, as well as create behavioural change among Canadians towards children and youth with mental illnesses, it is recommended that creative communication plans be developed and implemented. Communication should specifically speak to the issue of stigma, and the need for societal tolerance for mental health disorders and the issues surrounding them. Similar to the multi-year tobacco strategy, best practice programs could be developed for educating people about:

• Identifying children and youth with mental illnesses;
• The common denominators of coping; and,
• Methods of integrating them into their peer groups and education systems.

This communications program should be rigorously evaluated to assess the impact on modifying behaviours and improving the integration of these children into the education system. Since the Mental Health Commission intends to launch multi-year programs aimed at combatting stigma, consideration should be given to providing additional funding to the Commission to enable it to increase its focus on anti-stigma programs aimed at children and youth.

6. Addressing Youth Suicide

Suicide in young people is a leading cause of death among Canadian adolescents and a public health concern. Suicide attempts outnumber completed suicide by a ratio of about 4:1.

Suicide Death Rates by Age Group First Nations and Canadian Populations, 1989-1993 ¹⁴³

Source: Canadian Institute of Child Health, 2000

Although a plethora of suicide prevention and "for profit" training programs are available, there is little substantive evidence on the effectiveness of most of these initiatives. Given current evidence, early identification and effective treatment of young people with mental disorders is the most established approach to addressing youth suicide, but some other approaches such as gatekeeper training, restriction of access to lethal methods and training of primary health care providers in the detection and treatment of youth depression merit consideration. Unfortunately, many jurisdictions are currently applying unproven or ineffective youth suicide prevention initiatives while the wider provision of mental health care for youth with mental disorders is lacking. While some initiatives addressing research in this area have begun, much more is needed to inform the design, development, delivery and evaluation of the effectiveness of youth suicide prevention programs. It is recommended that the federal government provide specific research funds through the Institute of Neuroscience, Mental Health and Addictions (IMNHA) for immediate research to evaluate the effectiveness of existing youth suicide prevention programs.

Conclusion

Canada urgently needs a National Mental Health Strategy that incorporates a framework for mental health services for children and youth. We know that children who suffer from mental illness, and who remain untreated, are far more likely to be negatively impacted by health and social issues when they become adults. It is by openly talking about both the challenges and the solutions that we begin to break down the stigmas associated with mental illness in Canada. It is by all jurisdictions, stakeholders and health care practitioners planning and working together, towards a common goal, that our children and youth will be able to have timely access to the professional mental health services and programs they desperately need.

II. Chronic Illness and Disease

In Canada, 1,300 children and youth develop cancer ever year¹⁴⁴, 16% suffer from asthma, and a staggering 33% of Canadian children born today will develop diabetes. Overall in Canada, up to 20% of Canadian children and youth and their families are affected by chronic disease and illness they battle their entire lives.¹⁴⁵ They need both the regular physical and emotional support of their parents or caregivers, and the support and care of the health care system.

Many Canadian children are affected by chronic diseases, which have a major impact on their health and development. Throughout the consultation process, many of these diseases and health issues were raised as being among the most substantive entities impacting on the health of Canadian children and youth. They included epidemics such as asthma, public health issues such as sexually transmitted infections, diseases for which there are no cures including diabetes and cancer, as well as those for which immunizations, pharmaceuticals and surgery can be effective for prevention and treatment.

What Canadians Said

It was clear from the consultations in every jurisdiction that parents are growing increasingly concerned about the growing incidence of chronic diseases that can have an impact on both a child's health and their socialization. While parents are thankful for the earlier diagnosis of their child's health problem due to better screening tools and techniques, there are often challenges with trying to access the appropriate follow-up services.

Chronic Health Indicators

In order to benchmark to the world's best, common indicators of chronic childhood and adolescent diseases should be monitored.

These indicators could include:

• Access to care/wait times for care;
• Children diagnosed with asthma (under 5 years, 5 - 18 years);
• Hospitalization due to asthma or respiratory illness (under 5 years, 5 - 18 years);
• Proportion of children vaccinated according to NACI guidelines;
• Incidence and prevalence of childhood cancers;
• Incidence and prevalence of type 1 and 2 diabetes in children;
• Rate of sexually transmitted infection and HIV diagnoses (12 - 18 years);
• Rate of teenage pregnancy (12 - 18 years);
• Prevalence of smoking among youth (12 - 18 years); and,
• Proportion of children tooth decay-free at ages 6 and 12 years.

Data on many of these, or similar indicators are already being collected. However, comparable indicators are required. The collection and dissemination of comparable data that is geographically equitable is extremely important for national program and policy development.

Challenges and Issues

Methods of treatment and care for many childhood chronic diseases are well established. Canadian health care professionals are considered among the world's best - especially in the treatment of asthma, type 1 and type 2 diabetes, and childhood cancers. However, these children and their families require more than medications and surgery to deal with their chronic diseases. They often are dependent on medical technologies and require emotional, physical and financial support. The statistics with respect to these children, similar to children with disabilities, show that family incomes average, one-third less than in a family of an equivalent size with healthy children.¹⁴⁶

Many of these parents also carry the burden of possible long-term illness and possible death of their children at a young age. Health care professionals are often able, to the best of their ability, to speak to parents and family about the death of their child within a three to six-month timeframe. In order for these parents to spend time with their children in the last days of their lives, it is recommended that the compassionate care benefit currently provided for up to six weeks through HRSDC be increased to up to 12 weeks for the primary caregiver of chronically ill children and youth.

Role of the Federal Government: Recommended Action

There are a number of disease categories where the federal government should proactively engage in consultation with P/T jurisdictions, and in the development of national standards and best practices. In some cases it involves encouraging the early adoption of new technologies, in others it is ensuring that children and youth are able to keep treatment close at hand. In all instances, Health Canada and the Public Health Agency of Canada need to work with P/T jurisdictions to ensure that children and youth who have chronic diseases have the health supports they need to lead as normal and healthy a life as possible.

The areas where Health Canada and the Public Health Agency of Canada are encouraged to play a role are:

1. Asthma and Allergies
2. Diabetes
3. Immunizations
4. Pharmaceutical Research, Surveillance, and Labeling
5. Medical Screening
6. Transition of Care

1. Asthma and Allergies

Asthma is a chronic inflammatory disease, in which children suffer from varying degrees of inflammation and muscle constriction of the lung airways.¹⁴⁷ The result is shortness of breath and a feeling of suffocation. Children who can't breathe, can't play or enjoy many of the things most of us took for granted as kids.

Canada has one of the highest incidences of asthma in the world, and it is the number one reason for paediatric emergency room visits in Canada.¹⁴⁸ It remains a major cause of hospitalization for children. Sixteen percent (16%) of Canadian children suffer from asthma, with the incidence of asthma in kids under 14 increasing 400% in the past 15 years.¹⁴⁹ Children and youth with asthma visit an emergency room approximately four times a year. The cumulative cost of this to the health care system is one billion dollars annually.

Every year, asthma causes 20 fatalities in children.¹⁵⁰ According to the Asthma Society of Canada, many acute attacks in asthmatic children are preventable. One Canadian household survey found that half of asthmatic school-aged children reported that household pets triggered or worsened their disease, yet 41% had a dog and 36% had a cat inside their home. Similarly, 54% of asthmatic children were exposed to second hand smoke, yet smoke was identified as worsening their asthma.¹⁵¹ Steps need to be taken to educate parents, children and youth on the issues that can prevent asthma and allergic reactions.

With approximately three children per classroom suffering from asthma, and with these numerous environmental factors impacting their ability to function, we must ensure that when our children and youth are in a school environment, they have all of the tools and assistance they need right at hand.

It is recommended that provincial and territorial governments be encouraged to legislate the right for children and youth to be allowed to use their puffers in the classroom. This simple change can directly save children's lives.

The same legislation should extend to Epi-pens for children with severe allergies. Children with severe allergies that could result in anaphylaxis are also at risk in school environments. Much work has been done in this area to protect our children and youth. Ontario leads the way with a best practice in 'Sabrina's Law';¹⁵² it requires all school boards to develop policies to manage potentially life-threatening allergic reactions and to train staff to administer the life-saving Epi-pens. It is recommended that legislation similar to Sabrina's law be implemented across the country such that no child will ever die in a Canadian school due to an allergic reaction.

2. Diabetes

a. Insulin use

There are two kinds of diabetes. In type 1 diabetes, the pancreas is unable to produce insulin. In type 2 diabetes, the pancreas does not produce enough insulin, or the body does not effectively use the insulin produced. As a result, glucose builds up in the bloodstream, potentially leading to serious health problems. There is a third type of diabetes - gestational diabetes - which is a temporary condition that sometimes occurs during pregnancy.

One in three Canadian children born today will develop diabetes, especially if they are members of high-risk populations.¹⁵³ While it is rare for children under five to develop diabetes, type 1 diabetes can occur in babies when they are only a few months old. Alarmingly, type 2 diabetes is now being found in children under five.¹⁵⁴

b. National Diabetes Strategy

Type 1 and type 2 diabetes are rapidly escalating among Canadian children and youth. The statistics are staggering:

• Approximately 176,500 Canadian under 20 years of age have diabetes;
• 1 in 400-600 Canadian children and adolescents have type 1 diabetes; and,
• In some aboriginal communities, 8-10% of children have type 2 diabetes¹⁵⁵.

This serious disease has chronic and long-term health and economic impacts for Canada.

The control of a child's blood sugar is the best means to avoid future medical challenges such as kidney failure requiring renal dialysis, cataracts and retinopathy causing blindness, and neuropathy, which can lead to infections and limb amputations.

It is recommended that a significant component of the National Diabetes Strategy focus on children and youth. By screening and identifying children early, as well as educating and training them to control their diabetes well, many of these substantive chronic medical problems can be decreased in adulthood.

As mentioned in the healthy lifestyle section of this Report, the correlation between type 2 diabetes and obesity is becoming well established. These statistics, and the rate at which the incidence of type 2 diabetes is growing, are staggering. The establishment of an adult disease such as type 2 diabetes in early childhood is alarming, and alerts us to the realization that we must deal with the prevention of adult disease during fetal development and childhood.

While many medications are used to manage diabetes, one of the most common ones is insulin injections used primarily for type 1 diabetics. In the same way that asthmatic children need continual access to their puffers, diabetic children need constant access to their treatments, often delivered through needles. It is recommended that provinces and territories be encouraged to pass legislation to allow diabetic children and youth to keep their insulin, and the delivery mechanism for their insulin and glucose monitoring devices in the classroom and available to them at all times.

c. Insulin Pumps

While insulin pumps have been in existence for over 20 years, it is only in the last decade that they have become a more effective, mainstream way to help people with diabetes achieve better control of their blood glucose levels. Pumps help keep blood sugar levels more constant with less fluctuation which is especially beneficial for people with type 1 diabetes. In fact, numerous longitudinal studies have shown that maintaining tighter control on blood sugar to normal levels leads to fewer long-term complications such as kidney disease, amputations and sight loss.

Currently, the Income Tax Act allows insulin pumps to be partially deducted as a medical device. It is recommended that Health Canada, through the National Diabetes Strategy, further support insulin pumps by:

• Educating children with diabetes about insulin pumps and other prevention and treatment methods that can improve their quality of life; and,
• Developing targeted education and communications to teach children about diabetes, especially type 2 diabetes.

3. Immunizations

a. National Immunization Strategy

Publicly-funded immunization programs¹⁵⁶

Province/Territory	2005 Status	2007 Status	Comments
British Columbia	Good	Good	Provides coverage for all five recommended vaccines but meningococcal vaccine is not given according to CPS and NACI recommendations.
Alberta	Excellent	Excellent	Provides coverage for all five recommended vaccines according to CPS and NACI recommendations.
Saskatchewan	Good	Good	Provides coverage for all five recommended vaccines, but meningococcal vaccine is not given according to CPS and NACI recommendations.
Manitoba	Good	Good	Provides coverage for all five recommended vaccines, but meningococcal and pneumococcal vaccines are not given according to CPS and NACI recommendations.
Ontario	Good	Good	Provides coverage for all five recommended vaccines, but meningococcal vaccine is not given according to CPS and NACI recommendations.
Quebec	Fair	Good	Provides coverage for all five recommended vaccines, but meningococcal and pneumococcal vaccines are not given according to CPS and NACI recommendations.
New Brunswick	Good	Good	Provides coverage for all five recommended vaccines, but meningococcal vaccine is not given according to CPS and NACI recommendations.
Nova Scotia	Good	Good	Provides coverage for all five recommended vaccines, but meningococcal vaccine is not given according to CPS and NACI recommendations.
Prince Edward Island	Good	Fair	Provides coverage for four of the five recommended vaccines. Meningococcal vaccine is not given according to CPS and NACI recommendations. A fee is applied for the administration of the influenza vaccine for infants aged 6-23 months.
Newfoundlandand Labrador	Good	Good	Provides coverage for all five recommended vaccines, but meningococcal vaccine is not given according to CPS and NACI recommendations.
Yukon	Fair	Good	Provides coverage for all five recommended vaccines, but meningococcal and pneumococcal vaccines are not given according to CPS and NACI recommendations.
Northwest Territories	Fair	Good	Provides coverage for all five recommended vaccines, but meningococcal vaccine is not given according to CPS and NACI recommendations.
Nunavut	Fair	Good	Provides coverage for all five recommended vaccines, but meningococcal vaccine is not given according to CPS and NACI recommendations.

In recognition of the significant national public health benefits associated with immunizations - especially among child and youth populations - the F/P/T Advisory Committee on Population Health and Health Security (ACPHHS) developed a National Immunization Strategy (NIS) on behalf of the Canadian Deputy Ministers of Health.¹⁵⁷

The NIS was seen as a means for F/P/T jurisdictions to work in partnership to improve the effectiveness and efficiency of immunization programs in Canada. In June 2003, the Conference of F/P/T Deputy Ministers of Health accepted the NIS's advice in moving forward on immunization issues in Canada. While there is a need for national collaboration in this area, provinces and territories continue to be responsible for planning, funding and delivering immunization programs to their respective populations, and to contribute to the shared activities that support a national immunization strategy. The federal government has demonstrated its commitment to this strategy, providing $10 million in annual funding to enable strengthened collaboration with the provinces, territories and key stakeholders to improve the effectiveness and efficiency of immunization programs in Canada.

Even with the federal government investment, all Canadian children and youth do not receive equal access to vaccinations, leading to significant public health gaps. For example, only 76.8% of Canadian children have been immunized for DPT (a combination of 3 vaccines for diphtheria, pertussis, tetanus), placing Canada 26 out of 27 OECD nations.¹⁵⁸

There is an important role for the federal government to play in helping to support new vaccines for children and youth. The National Immunization Strategy¹⁵⁹ helps facilitate a pan-Canadian approach to immunization best practices. The National Advisory Committee on Immunization (NACI) makes recommendations regarding the use of human vaccines in Canada, including the identification of groups at risk for vaccine-preventable disease for whom vaccine programs should be targeted. All provincial and territorial governments fund, to varying levels, the administration of at least nine childhood vaccines (diphtheria, polio, tetanus, pertussis, Hib, measles, mumps, rubella, hepatitis B). It is recommended that the federal government continue to support the work of the National Advisory Council on Immunization (NACI) in getting valuable information to health care providers and parents.¹⁶⁰ In order to help facilitate this, it is recommended that updated versions of the Canadian Immunization Guide¹⁶¹ be published every two years, instead of the current four year cycle. However, it is important to ensure that NACI is appropriately resourced to complete this task. NACI is a committee resourced by volunteers, and support for these individuals is required.

b. Linking the National Child Benefit to Immunization

In addition to making immunizations available, it is in the national interest to incent parents to have their children immunized. In an effort to motivate parents to protect their kids, it is recommended that the distribution of the National Child Benefit income supplement be linked to immunizations for children. Following in the footsteps of Australia, parents would not receive their national child benefit cheque unless they show proof of immunization or purposely declining immunization of their children. Immunizations save lives and are cost effective. We all have a responsibility to get every Canadian child immunized.

c. HPV

There are other vaccines that have recently been made available, that could have a direct impact on child and youth health. The federal government recently provided $300 million to P/T jurisdictions to provide immunization for the Human Papillomavirus (HPV), the leading cause of cervical cancer.

With numerous new vaccines becoming available that have a substantive health impact on children and youth, public awareness, education and advertising is required to educate not only parents, but also children and youth of these potential benefits. It is recommended, that Health Canada, through the new Industry/NGO Liaison Office work with the industry to develop the public awareness campaigns of these meaningful vaccinations.

4. Pharmaceutical Research, Surveillance, and Labeling

Currently, physicians are not willing to prescribe a number of innovative, new pharmaceutical products because there is often little clinical information available about their potential effect on children's physiology. In other cases, because there are no other options available, pharmaceutical products are being prescribed that have not been thoroughly researched for their potential impact on children and youth. While the challenges of conducting clinical trials on children are recognized, researchers, industry and clinicians need to identify ways of ensuring that products being approved for use in Canada have been appropriately evaluated for their impact on children and youth populations.

Many pharmaceutical products do not label their products with dosage guidelines for children and youth, creating situations where physicians prescribe the product to children and youth "off-label". This practice is dangerous, as there is no way to determine if there might be an adverse health reaction based on dosage. In Europe, the European Medicines Agency commissioned a paediatric expert group (PEG) to study off-label prescribing. The PEG reviews pharmaceutical formulation for children's use along with other indicators. In the United States, the Best Pharmaceuticals for Children's Act (1998) and the Paediatric Research Equity Act (2003) created legislative standards for children's use of drug products, including a restriction on children having off-label drugs.

It is recommended that Health Canada take the following action to better inform Canadians of the clinical effects of pharmaceutical products on children and youth:

• Establish a Canadian paediatric clinical pharmacological network;
• Commit to a dedicated research competition for drug research in children;
• Develop a Canadian national children's formulary as a web-based resource;
• Provide the pharmaceutical industry with an additional six months of patent protection for pharmaceutical products if pharmaceutical companies can demonstrate they are conducting product research that impact on children and youth; and,
• Take action to encourage pharmaceutical label changes for "on-label" child dosages. Clinical trial results should be reflected on product labels within six months of
  the trial completion.

This work should be conducted by the Office of Paediatric Initiatives (OPI) in the Health Products and Food Branch (HPFB) of Health Canada. The Paediatric Expert Advisory Committee on Health Products and Food (PEAC-HPF) will be able to provide excellent direction on these issues. The proposed research in this field should be considered and completed in conjunction with CIHR.

5. Medical Screening

One of the most important things we can do to help improve child and youth health is to work together to ensure that our children get a healthy start to life, and that any potential health risks are identified and treated as early as possible. Part of this process is health surveillance which, where possible, should occur throughout childhood.

a. First Year of Life Screening

From birth on, there needs to be a concerted effort to ensure that children are appropriately screened and treated for conditions affecting single-entity organs with a specific focus on the eyes, ears and mouth. While there are many screening programs in place across the country, there is no single national best practice guideline that ensures the appropriate surveillance is occurring for all children. It is recommended that screening guidelines be created by the Public Health Agency of Canada for newborn and first year of life screening standards. This should be done in collaboration with provincial and territorial governments, as well as non-governmental organizations.

In association with national screening guidelines, a National Child Screening Report Card which clearly outlines to parents the key milestones their children should be achieving, and screening tests they should be receiving, is essential. It will allow parents to be empowered, and incented, to acquire the key screening exams for their children. Health care professionals, NGOs, and governments have a key role to play in the development of this Report Card, and the implementation of these screening tools. It is recommended that a best practice National 'Five Senses' Child Screening Report Card be developed in collaboration with the provinces, territories and NGOs. This Report Card will provide parents with their child physical record of audiology, optometric, and dental screenings and treatments, as well as immunizations and developmental milestone exams.

There are a number of best practice programs and information packages that have already been created by P/T and other international jurisdictions. These should be reviewed by the Public Health Agency of Canada for their best practices.

Currently in Canada, two of the five components of the exam have programs and methods for implementation. The National Immunization Strategy is working to ensure all Canadian children are immunized while paediatrician and family doctors and nurses perform developmental assessments everyday. However, strategies for audiology, vision and dental care are not universally accessible, but are essential. NGOs, the private sector, professional organizations, governments, and patients need to work together to develop and implement this plan.

b. Audiology

According to the Hearing Foundation of Canada 2,233 babies born in Canada have hearing loss - including some with profound deafness.¹⁶² Early detection of hearing problems is critical to prevent any impact on a child's speech, language and social development. Unfortunately, Canada lags behind Europe and the United States where 86.5% of all newborns are now screened for hearing loss compared to just 41% in Canada. In spite of the fact that hearing loss is one of the most common birth defects, only Ontario, New Brunswick, PEI, the Yukon Territory and recently, British Columbia, have implemented universal programs for infant hearing screening and Alberta has enacted a pilot project in several communities. Newborn audiology screening is essential for children to have an excellent start in life. All provinces and territories are encouraged to implement this essential screening process.

c. Dental Care

Dental caries (tooth decay) are the most common chronic disease among children.¹⁶³ Dental health has long been separate from primary health care services and is not included in most P/T health care coverage; it is largely left to private and corporate third party insurance plans. It therefore, comes as no surprise that dental disease is concentrated in disadvantaged groups who have no access to these third-party insurance policies.

Canada's treatment of oral health programs differs from several other international jurisdictions. Australia, New Zealand and the UK all have universal, national publicly-funded children's oral health programs. In Canada the level of provincial and territorial oral heath coverage for children and youth varies; some provinces provide no coverage at all.

The Governments of Saskatchewan, Ontario and Canada provide best practice examples in dental health. Saskatchewan has a province-wide program for dental care where, by the age of six, every child has had an oral exam, with their teeth capped or coated for future protection. Ontario offers coverage for a Far North Dental Program, which makes sure that any child in need of dental services can access them. Health Canada has the Children's Oral Health Initiative (COHI) as a means to address the disparity between the oral health of First Nations and Inuit and that of the general Canadian population, which has been a very successful and effective program.

We all must work together to ensure that there are no economic barriers to Canadian children and youth accessing dental services. Dental services should be included as a necessary part of child screening programs and the recommended surveillance report card.

d. Optometric Care

About 80% of all babies are born far-sighted. Approximately 5% are born near-sighted, or unable to see objects at a distance clearly. Only 15 percent of babies are born with nothing wrong with the refractive parts of their eyes. Farsightedness usually decreases as a child ages, typically normalizing to a negligible value by the age of 7-8 years.¹⁶⁴

Optometric eye tests are an important part of infant and child developmental screening programs. It is recommended that F/P/T governments ensure that they appropriately support optometric eye examinations for children and youth in their respective jurisdictions and include them as a necessary part of developmental surveillance such that there is no economic barrier to a child receiving a screening exam.

e. Sexually Transmitted Infections (STI)

STIs have a life-long impact on infected children and youth. These kids may contract STIs due to risky behaviour, or simply through their infected parent. Parents, children and youth must be better educated in the risk behaviours, long-term impacts, and treatment options of these infections.

There needs to be stronger linkages between organizations and F/P/T government programs in this area in order to facilitate:

• Research in this area (e.g. McCreary report on BC street youth¹⁶⁵);
• NGOs/educators delivering the preventative health programs (e.g. CANFAR); and,
• Voluntary and private sector organizations and foundations that could assist in supporting these programs.

Thus, it is recommended that governments partner with NGOs, community organizations and private sector companies to broadly spread the message about the risks and treatment options for STIs. These organizations know the issues well, and how best to communicate with those affected. Governments should "support them and get out of the way" of these organizations so more individuals can be reached.

As noted previously, the Government of Canada should be commended for its action to fund vaccinations which will help prevent infection for some types of Human Papillomavirus (HPV), offering protection against HPV types responsible for approximately 70% of cervical cancers. The goal now should be to educate young women on the opportunity to protect themselves. Collaboration with NGOs, community organizations, and industry will be key to making this happen.

6. Transition of Care

There is a challenge ensuring appropriate care to adolescents, with what are considered to be 'childhood' diseases, when they become adults and no longer have access to paediatric specialists who have the expertise to treat their diseases. For example, neuroblastoma is a childhood cancer largely diagnosed and treated by paediatric physicians. Physicians who treat mainly adult patients have little experience with this disease, and might not recognize symptoms when individuals present themselves for diagnosis.

Children with chronic diseases that live into adulthood have unique challenges. The transition to adulthood within the health care system, as well as accessing appropriate resources, can be frustrating. There needs to be a better process established for the transition of care from youth to adulthood, especially for individuals with specific 'paediatric diseases'.

The federal government can play a leadership role in this field. It is recommended that a Transition of Care Strategy and best practices be developed by the Health Human Resource Strategies Division of Health Canada in collaboration with the Royal College of Physicians and Surgeons, the College of Family Physicians and the College of Nurses. They should be encouraged to develop new fellowship and educational opportunities for undergraduate and post-graduate students in the field of transition of care for these adolescent patients.

Conclusion

Every child and youth diagnosed with chronic disease and illness should have access to timely and professional health services, no matter where in Canada they live. This can be assisted by implementing screening tools that will catch disease as early as possible, and ensuring that immunization programs are universally available to help prevent common childhood diseases. Through the creation of uniform, measurable national standards for screening and the development of a ''Five Senses' Child Screening Report Card, Canada will begin to take steps towards becoming a world leader in the identification and management of chronic disease and illness in children; however, there remains a long way to go.

Summary of Recommendations

Mental Health

• A National Centre of Excellence on Mental Health and Substance Abuse among Children and Youth should be created to address the mental health issues facing Canadian children and youth.
• In order to immediately facilitate the creation of a National Paediatric Mental Health Access Strategy, it is recommended that the Child and Youth Advisory Committee of the Mental Health Commission of Canada establish an Expert Panel to focus on this issue in the first six months of their mandate.
• A National "Wait Time Strategy for Child and Youth Mental Health Services" should be developed in the next twelve months.
• Because of the lack of specialists and other ancillary health care providers in the field of mental health in Northern remote areas, it is recommended that a 'fly-in' mental health human resources pool be created.
• Each refugee child aged 16 and under should receive a mental health assessment upon entering Canada.
• It is recommended that the Royal College of Physicians and Surgeons, the College of Nurses, and the College of Family Physicians, among others, create specific educational sections addressing child and youth mental health. With the Health Policy Branch at Health Canada, they should be encouraged to develop and deliver innovative training programs using a needs driven, competencies based approach that could be made available to both formal and informal providers.
• It is recommended that a national best practice program on identifying children in distress be developed to educate people who have regular contact with children.
• The federal government should provide specific research funds through the Institute of Neuroscience, Mental Health and Addictions (IMNHA) for immediate research to evaluate the effectiveness of existing youth suicide prevention programs.

Chronic Illness

• The compassionate care benefit currently provided for up to six weeks through HRSDC should be increased to up to 12 weeks for the primary caregiver of chronically ill children and youth, in order for these parents to spend time with their children in the last days of their lives.
• It is recommended that legislation similar to Sabrina's law be implemented across the country such that no child will ever die in a Canadian school due to an allergic reaction. It is also recommended that legislation be passed to allow diabetic children and youth to keep their insulin, the delivery mechanism for the insulin and glucose monitoring devices in the classroom.
• Currently, the Income Tax Act allows insulin pumps to be partially deducted as a medical device. It is recommended that Health Canada, through the National Diabetes Strategy, further support insulin pumps by:
  • Educating children with diabetes about insulin pumps and other prevention and treatment methods that can improve their quality of life; and,
  • Developing targeted education and communications to teach children about diabetes, especially type 2 diabetes.
• In an effort to motivate parents to protect their kids, the distribution of the National Child Benefit income supplement be linked to immunizations for children, similar to the approach being used in Australia today.
• It is recommended that the following action take place to better inform Canadians on the clinical effects of pharmaceutical products on children and youth:
  • Establish a Canadian paediatric clinical pharmacological network;
  • Commit to a dedicated research competition for drug research in children;
  • Develop a Canadian national children's formulary as a web-based resource; and,
  • Provide the pharmaceutical industry with an additional six months of patent protection for pharmaceutical products if pharmaceutical companies can demonstrate they are conducting product research that impacts on children and youth.
• Action should be taken to encourage pharmaceutical label changes for "on-label" child dosages. Clinical trial results should be reflected on product labels within six months of the trial completion.
• It is recommended that guidelines be created for newborn and first year of life screening standards.
• It is recommended that a best practice National 'Five Senses' Child Screening Report Card be developed in collaboration with the provinces, territories and NGOs. This Report Card will provide parents with their child physical record of audiology, optometric, and dental screenings and treatments, as well as immunizations and developmental milestone exams.
• It is recommended that we all ensure that there are no economic barriers to Canadian children and youth accessing dental services. Dental services should be included as a necessary part of child screening programs and the recommended National Child Screening Report Card.
• It is recommended that F/P/T governments ensure that they appropriately support optometric eye examinations for children and youth in their respective jurisdictions and include them as a necessary part of developmental surveillance such that there is no economic barrier to a child receiving a screening exam.
• It is recommended that a Transition of Care Strategy and best practices be developed by the Health Human Resource Strategies Division of Health Canada in collaboration with the Royal College of Physicians and Surgeons, the College of Family Physicians and the College of Nurses. They should be encouraged to develop new fellowship and educational opportunities for undergraduate and post-graduate students in the field of transition of care for these adolescent patients.