Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 13 - Evidence for April 30, 2003
OTTAWA, Wednesday, April 30, 2003
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 3:52 p.m. to study on issues arising from, and developments since, the tabling of its final report on the state of the health care system in Canada in October 2002. In particular, the committee shall be authorized to examine issues concerning mental health and mental illness.
Senator Michael Kirby (Chairman) in the Chair.
[English]
The Chairman: We have with us today three presenters. The first is Pam Massad, who is Associate Director at Health Canada's Division of Childhood and Adolescence. We also have Dr. Joe Beitchman from the Department of Psychiatry at the University of Toronto, and Dr. Johanne Renaud, Child and Adolescent Psychiatrist Young Investigator with the Canadian Institutes of Health Research.
I should also say for the record that we are absolutely delighted to have our colleague Senator Robertson back. Welcome back.
We will proceed with each of you doing your opening remarks and then we will have a discussion as a group. Thank you for coming.
Ms. Pam Massad, Associate Director, Division of Childhood and Adolescence, Centre for Healthy Human Development, Population and Public Health Branch, Health Canada: I am pleased to be here today to speak to you about a serious issue, which is fetal alcohol spectrum disorder, which is known as FASD.
At least one baby a day in Canada is born with fetal alcohol syndrome, FAS, a disability that will have repercussions for the child, his or her family and the community for the individual's entire life. FASD is the leading cause of preventable birth defects and developmental delays in Canada. It is more common than Down's Syndrome.
Today I will provide a brief overview of FASD and to describe its impact on children, youth, parents and caregivers who are living with the challenges of FASD on an daily basis. I would like to highlight the importance of a medical diagnosis and early intervention on the prognosis for people living with FASD.
I would also like to give the committee an overview of the work that Health Canada is currently doing in this area. We at Health Canada are taking a pan-Canadian approach including services provided by First Nations and Inuit Health Branch. We are working with provinces and territories as well as First Nation and Inuit communities to deliver a comprehensive and coordinated approach to the issue. I will address this further in my presentation.
Fetal alcohol spectrum disorder is an umbrella term that refers to the range of clinical conditions associated with prenatal alcohol exposure. FASD includes a range of alcohol related disabilities such as FAS, fetal alcohol effects, FAE, partial fetal alcohol syndrome, PFAS, alcohol related neurological disorder, ARND, and alcohol-related birth defects
FAS is a medical diagnosis and the most easily diagnosed alcohol-related disability. It takes into consideration known maternal alcohol consumption during pregnancy, a specific pattern of facial features, growth deficiencies, developmental delays and damage to the central nervous system.
However, the degree and level of FASD varies greatly in timing, dose, frequency, condition of exposure, individual mother and fetus. Children do not grow out of FASD. It is a lifelong disability. Most frustrating is that at the root it is 100 per cent preventable.
FASD is a fairly new field of study. As a result, we are still working on building our evidence base. We are currently not collecting data on a national basis, but have begun to work towards standardized diagnosis guidelines that will help to begin to collect reliable data that we can use.
A conservative estimate puts the incidence of FAS at 1 to 3 cases per 1,000 births per year.
The Chairman: That is a Canadian number?
Ms. Massad: That is an international estimate.
For FASD, which is the spectrum of which I spoke, that number would be higher. It is also higher in Aboriginal communities as a result of serious social problems and a teen birth rate four times higher than the national average.
However, it is not just an issue for Aboriginal women or marginalized women. Drinking alcohol during pregnancy crosses all socio-economic barriers. For example, anecdotal evidence from clinicians indicates an increase in FASD births to university educated women in their late 20s and early 30s. This could be because of their lifestyle. It may involve alcohol in social and professional settings. This is interesting to note when we develop our public awareness campaigns. They are not normally women we would classify as at risk.
FASD has numerous effects on the child. These include: primary disabilities, which are permanent life-long disabilities that are a direct result of prenatal exposure to alcohol causing changes in brain and central nervous system structure and functioning. The primary difficulties can include behavioural difficulties, learning disabilities, growth deficiencies, attention deficits, memory problems and poor social skills.
People with FASD are more likely than the general population to develop problems called secondary disabilities. These include mental health problems, difficulty with the law, disruptive school experience such as suspension, alcohol, drug problems and inappropriate sexual behaviour. Secondary disabilities may be prevented or managed if they are understood. Appropriate intervention strategies can then be developed and implemented.
A study done by Anne Streissguth out of Seattle, Washington, in 1997 show the range of secondary disabilities resulting from prenatal exposure to alcohol and their persistence throughout the lifespan. As you can see in this table, mental health problems are quite high and do not vary with age. Ninety-five per cent of these individuals are affected with mental health disorders. Disrupted school experience increases as those affected grow older. Incidence of trouble with the law also increases considerably with age and remains quite high across the life span. Confinement is usually the outcome for people with FASD who get in trouble with the law.
I would like to note that secondary disabilities are not caused by the direct effects of alcohol on the developing fetus but by the individual's inability to function in society.
Parents and caregivers of FASD children and youth are often their sole advocates, friends and constant companions. At present, there are no coordinated comprehension support system for parents and caregivers. Although direct services and supports to parents fall under the mandate of provinces and territories, Health Canada is committed to working in collaboration and partnership with all levels of government to ensure that families and communities are well supported.
Due to the limitations and disabilities of the FASD child, parents and caregivers are required to provide constant care. Many parents and caregivers experience social and emotional isolation from family, friends and their communities. In their attempts to access the required services and supports for their child, many families experience serious financial burdens. Many provinces and territories do not offer financial support for specialized health services, educational supports and legal supports.
A 1999 study shows clearly that intervention, which includes diagnosis, mitigates the onset of secondary disability in those affected with FASD. It is important to the well-being of the child that a medical diagnosis is made as early as possible. Currently, these diagnoses are made between the ages of 7 and 10. Studies are suggesting that the diagnoses be made earlier — between ages of 4 to 6.
An FAS diagnosis is not just attaching a medical term or label to the disability. It is often the key to accessing the support and services required by those affected.
Those who have been affected by FASD speak of positive things that have come from a clear diagnosis of their disability. It can provide a child, individual and family with the knowledge they require to function and successfully manage their lives within their individual abilities and limits. In some provinces, an FAS diagnosis will allow a child additional support within his or her classroom or special sessions with an occupational therapist.
Health Canada is currently working on the standardization of diagnostic guidelines with experts and clinicians across the country and to ensure consistency and cultural appropriateness, particularly as it relates to Aboriginal communities. We are also working very closely with our stakeholders, such as the Canadian Paediatric Society, to develop these guidelines.
There have been several federal initiatives that provide funding streams for FASD, and those are most notably the ones listed: the Canadian Prenatal Nutrition Program Expansion, the federal-provincial-territorial Early Childhood Development, ECD, strategy, and the federal ECD strategy for First Nations and other Aboriginal children.
It is important to note, however, that FASD, throughout the life stages, is best addressed through integrated and coordinated efforts of all players. We are much more effective when we work together in partnership. It is important that governments at all levels, including First Nation Community Councils, collaborate. The federal government must also come together with their federal colleagues such as Justice, Solicitor General, Human Resources Development Canada, the homelessness secretariat, to name a few, as well as provincial and territorial partners to address the gaps in services to those children, youth, families and communities affected by FASD.
An example of this collaboration is our work on our national framework for action, which Health Canada is currently in the process of developing. This framework will be a collaborative effort to bring together all levels and jurisdictions to address a common set of goals and objectives focused on FASD.
As part of its FASD initiative, Health Canada has funded several national projects aimed at building community capacity to address challenges and barriers of FASD. Projects are targeted at raising awareness and building the skill levels of community-based, front-line workers and service providers to provide appropriate levels of services and supports to those living with FASD.
To provide an integrated and comprehensive approach to FASD, Health Canada has developed a national advisory committee, an interdepartmental working group, a departmental working group, and the national framework of action, of which you have been provided a copy. We are currently in the process of completing our consultation work on the draft framework, which includes meetings with the provinces and territories, other federal departments, and stakeholders across the country to gain their input and feedback.
Since 1999, many of our efforts at Health Canada have included launching a national public awareness campaign, a focus on professional awareness and knowledge for health care providers, standardizing screening and diagnostic tools, facilitating and encouraging community capacity building through the training of front-line workers and professionals. Health Canada remains committed to continuing to address the issues of FASD as part of a collaborative and cooperative effort across all jurisdictions.
Dr. Joe Beitchman, Professor and Head, Division of Child Psychiatry, Department of Psychiatry, University of Toronto; Psychiatrist-in-Chief, Hospital for Sick Children: Thank you for this opportunity to meet with you and share some of my observations with regard to children's mental health.
I wish to convey four main points. First, children's mental health disorders are serious, common, and represent a large burden of suffering in human and financial terms. Second, most mental health disorders of adults begin or originate in childhood and adolescence. Third, much can be done to reduce the level of distress and suffering. Fourth, the single most important thing the government could do is establish a governmental agency or department or ministry responsible for children's mental health. This agency must then become the ``champion with clout'' for children's mental health.
In its final report, the Commission on the Future of Health Care in Canada stated that mental health is the ``orphan child'' of health care. I am here to tell you that children's mental health is the ``all-the-forgotten-orphan'' of health care; it is the orphan's orphan.
Historically, mental health policies and programs have largely focused on the treatment of the adult population. Consequently, services for young have developed slowly and as an adjunct to programs for adults. What sorts of mental health problems do children have, and how common are they?
The cumulative prevalence of mental health disorders in children and youth ranges from about 12 per cent to 20 per cent, depending on the locale and the definitions used. Whatever figure is used, a very substantial number of children and adolescents are suffering, and either they or their families are in distress. In Ontario, there are approximately 400,000 children with mental health problems who are impaired and in need of treat and intervention. A report from the Ontario Child Health Survey found that only one-sixth of children needing help had seen a mental health professional in the previous six months.
The list of mental health disorders encompasses most of the adult disorders, such as anxiety or mood disorders or schizophrenia, but there are some that almost always begin in childhood and continue throughout adulthood. Examples of these disorders include autism and attention deficit disorder, ADD, among others. In addition, however, it is important to cast the net broadly, because children's mental health disorders includes more than just the diagnoses found in diagnostic manuals.
Children with mood disorders, anxiety disorders and suicide tendencies often suffer in silence; they are an invisible minority. These are quite prevalent at approximately 9 per cent to 13 per cent of the population. Furthermore, children and adolescents with mood and anxiety disorders are at increased risk for suicide. For reasons not fully understood, these mood and anxiety disorders peak in adolescence and are more common among females than males.
More teenagers and young adults die of suicide than die from cancer, heart disease, AIDS, pneumonia, influenza, birth defects and stroke combined. More than 90 per cent of children and adolescents who commit suicide have a mental disorder. Suicide attempts peak during mid-adolescence and the mortality from suicide increases steadily through the teen years.
The disruptive behaviour disorders represent about 3 per cent to 10 per cent of the total. They include things like attention deficit and hyperactivity disorder. In the short term, they result in considerable disruption in the lives of the children and their families. In the longer term, children with these disorders are at increased risk for substance use, delinquency, and related antisocial behaviour disorders. Although there are good models of treatment intervention, implementing them in the community remains an important challenge.
Substance use disorders in adolescence result in a wide range of impairments in life skills. These impairments include interpersonal conflict, family conflict, academic failure and others. They typically involve other associated characteristics such as risk-taking behaviours and other psychiatric disorders involving conduct problems, attention-deficit, mood and anxiety disorders and others. Surveys of problem drinking reveal that approximately 30 per cent of adolescent males reported patterns of problem drinking. In community surveys, lifetime prevalence of alcohol abuse or dependence ranged from 5 per cent in 15-year-olds to 32 per cent in 17 to 19-year-olds.
Autism is a disorder that typically affects a person's ability to communicate, form relationships with others, and respond to the environment. Some people with autism are relatively high functioning, with speech and intelligence intact. Others are mentally retarded, mute or have serious language delays. Autism is a chronic condition. Although some autistic individuals improve, 60 to 75 per cent have a very poor outcome.
The median prevalence of autism ranges somewhere between five per 10,000 cases. However, recent studies suggest that the prevalence of autism may be on the order of one per 1,000. It remains unclear whether this represents a true increase or is simply a function of differences in method such as better case ascertainment.
It is necessary to cast a wide net in conceptualizing mental health and mental illness. Family violence is a serious societal concern that creates substantial burdens of suffering. We also know that aggressive behaviour is durable over the long term, so that aggressive children and adolescents become aggressive and violent adults.
In Canada in 1992, approximately 40,000 children were living in foster care or other settings away from their home of origin because of the intervention of child protection services. In Ontario, the number of Children's Aid Society investigations for child physical abuse increased by a yearly average of 27 per cent over a 10-year period from 1983 to 1993.
Street youth have usually left home voluntarily because the home was experienced as a terrible place. They were victims of physical or sexual abuse or neglect. Leaving home for the street unfortunately brings them full circle into new forms of abuse or neglect. This may be drugs, prostitution and despair.
There are many impacts on the families of mentally ill children. The most commonly reported problems by family members were the effects on the family's mental health, with symptoms such as insomnia, headaches, irritability and depression attributed to concerns about the patient's behaviour. Their constant problems with no periods of remission and hospitalization of the patient induced stress on the family. There are also indirect costs of lost wages and productivity for family members and the direct costs of treating the family's mental health problems associated with the child's disorders. These burdens are most commonly found among families with children with chronic mental health disorders such as autism, ADHD, anorexia nervosa and others.
Most mental health disorders of adults begin in childhood or adolescence. Approximately three-quarters of psychiatric cases diagnosed at age 21 had previously been identified as a psychiatric case at age 18 or earlier. The proportion of cases previously identified ranges from 90 per cent for antisocial behaviour disorders to 72 per cent for mood disorders. In other words, roughly only 25 per cent or fewer individuals diagnosed with a psychiatric disorder at age 21 represent new cases. Therefore, putting more effort into prevention and early intervention would provide opportunities for prevention and reduction in the emergence of new cases.
I have tried to make the case that children's mental health disorders are serious and common; that they represent a large burden of suffering; and that most adult mental health disorders begin in childhood and adolescence. Furthermore, despite calls to reform the system and to address children's mental health, it is evident that governments can and should do more. What else can governments be doing? What is the role of government in relation to the children's mental health?
The single most important thing that government can do is to establish a governmental agency responsible for children's mental health. This agency then must become the champion with clout for children's mental health. A series of action plans would then follow.
Governments could take more leadership in promoting improved access to appropriate care and treatment. A recurring theme in children's mental health is the need for coordination and collaboration across and between sectors. For example, moving from an acute hospital setting to community care.
Coordination also involves different ministries such as health, family, child and community services, and education. Each has its own view and mandate of its role. One ministry needs to take responsibility to ensure that the needed resources are provided. With cutbacks in services in many school jurisdictions, appropriate intervention has been difficult to arrange.
System change and cross-sectoral collaboration would not be enough. There is a resource shortfall. There is also a need to improve and increase access to training in children's mental health practice and research. There is a need to have greater dissemination of information on treatments that work and to train a new generation of practitioners in effective forms of intervention.
There also must be greater efforts and a national plan to develop an agenda for health promotion and early intervention. Plans for a more proactive approach to mental health promotion and prevention should be a pivotal part of the government's agenda.
This agency could take leadership in promoting a broad focus on mental health issues. For instance, preventive interventions have been shown to be effective in reducing the impact of risk factors in mental illness and in improving development. There is a range of efficacious treatments.
Part of the answer lies in greater public awareness and developing and disseminating programs for educators on a variety of mental health issues such as recognizing signs of depression and other mental health concerns. Such programs do exist but much more could be done. One focus should include addressing stigma. Powerful and pervasive stigma prevents people from acknowledging their own mental health problems, much less disclosing them to others.
Health promotion should also include efforts to foster healthy attitudes and to reduce interpersonal violence. Greater efforts are needed to create a public debate and awareness that challenges the public and media displays of violence and aggression and that promote alternative pro-social approaches that mobilize communities to raise the consciousness of corporations and others on the use of violence as an advertising tool to children and youth.
The Chairman: That is an extremely depressing picture. It is important for us to have on the record just how bad things truly are and I thank you for that.
Our third speaker is Dr. Johanne Renaud from the Canadian Institutes of Health Research.
[Translation]
Dr. Johanne Renaud, Child and Adolescent Psychiatrist Young Investigator, Canadian Institutes of Health Research, Centre hospitalier universitaire Mère-enfant Sainte-Justine: I would like to thank members of the committee for giving me this opportunity to express my views which were influenced by my practice as a child and adolescent psychiatrist at Sainte-Justine Hospital where we treat children and adolescents under 18 every day, which represents over 60,000 consultations in our pediatric emergency room every year, in addition to pregnant women receiving obstetric or gynecological care, since women can give birth at Sainte-Justine Hospital. I will also present the views of Young Investigators in the Canadian Institutes of Health Research. In this regard, my team and I have just finished an exploratory study of death by suicide in social services in Quebec. I would like to thank the social services network for having allowed us to conduct this study of the population as child and adolescent psychiatrists. In addition, very recently, we began a study of suicide among young people in the general population of the province of Quebec. I particularly want to thank Dr. Turecki of the Suicide Research Division of McGill University to which I am attached, and who referred me to this committee today.
In 1997, 312 young people died as a result of suicide in Canada, including 261 who were between 15 and 19 years of age and 51 who were 14 or younger. I am sure you will agree that taking one's own life at 14 or 15, while thousands or even millions of people fight against death every day, remains a paradox. Suicide among young Canadians is a serious problem that should be made a priority.
Although suicide affects young people at all levels of society, some groups of young people seem particularly at risk of suicide and suicidal behaviour, notably young people who receive services from youth centres under the Young Offenders Act or under any legislation dealing with child protective services in various provinces, young people who come from families with a history of suicide or suicidal behaviour, as well as young Aboriginals.
However, the lack of consensus among various service providers on the general intervention framework, the absence of concerted effort and ongoing intervention among the resources of medical, psychosocial and community services are all major obstacles to achieving success with interventions designed for young people who present a high risk of suicide.
Our understanding of suicide is based on biological, psychological and sociological theories. But each one of these theories taken individually does not explain the multiple facets of this problem. That is why caution leads us to consider a number of biological, genetic, psychological, social and political factors that may lead to suicide.
We know that among the risk factors, the presence of one or more mental illnesses can be found in 90 per cent of death by suicide. What is more complex is that we usually find past life events — stories of abuse, abandonment, parental suicide or parental death when the child is young. Added to that are one or more mental illnesses that lead to ``comorbidity,'' which means several diseases that occur simultaneously. Those we find most often among youths are major depression, alcohol or drug abuse and behavioural disorders that are serious violations of established rules, which we call disruptive disorders. These young people are often viewed as delinquent, manipulators and aggressors, but they are also at very high risk of suicide.
In addition to all that we find a series of trigger or precipitating factors for suicide such as the well-known break-up of a love affair, academic failure or appearing before a court, which are in fact only the end of that road toward suicide.
However, the links between these risk factors are not easy to pin down. The fact remains that suicide is and always has been a complex phenomenon. Complex problems require complex treatment and intervention, which means that many different people and levels of service and government are involved. First and foremost this requires team work at all levels and at all times, a concerted effort where information must circulate easily.
However, according to the World Health Organization, the primary suicide prevention strategy necessarily involves treatment of mental illness. I fully support that recommendation. But before we can apply effective treatment, we must ensure some stability in basic living conditions as early as possible in the life of a child. This stability must be provided by the family, the school, and by child protective service organizations when parents cannot do so for a variety of reasons.
Next, we must make screening and early treatment of mental illness among children and adolescents a priority, especially those with a family history of suicide. To achieve this, we must raise awareness among various network stakeholders, and provide them with information and training in accordance with their roles and responsibilities, in order to help them recognize the signs of mental illness in children and adolescents. We must also train general practitioners in the evaluation and treatment of major depression among the young, in the front lines as part of the multidiciplinary team. We must establish a network of coordinated treatment and services. The approach we would advocate would be a pyramid model that represents a continuum from screening in schools to highly specialized care in child and adolescent psychiatric facilities, where a stakeholder who works at the lower levels can ask those above to provide an opinion and eventually go back down the pyramid later.
However, we must invest in the child's primary environment, that is the school. The reduction in services provided by nurses, psychologists and social workers have been significant in the past few years. Yet, the school remains the place where children spend most of their time. When stakeholders are present in the schools, they work in the community in close contact with general practitioners or family doctors. Early screening in the schools does seem possible in this context. We should therefore be organizing treatment and services in such a way that the first level provides mental health screening, the following level includes medical teams who are in contact with teams of social workers and psychologists in the community who can evaluate and treat mental disorders especially major depression, and another level that would be represented by child and adolescent psychiatrists who work specifically in the assessment and treatment of more complex mental disorders or comorbidity or who work with subjects who do not respond adequately to treatment. If child and adolescent psychiatrists directly receive referrals from schools or families without prior referral from a medical or psychosocial team, the services will quickly be saturated — and we can see this right now — which leads to a waiting list that can be two years long in certain facilities in Montreal. Having to wait two years to see a child psychiatrist is rather worrisome.
The majority of people will not agree to see a child and adolescent psychiatrist therefore such psychiatrists must be available to support and train medical and multidisciplinary teams and provide the latest treatments such as those offered in specialized clinics for youngsters and their families who do not respond or respond only partially to standard approaches, or who require more complex and less frequently used therapies.
In terms of prevention within our schools, we suggest replacing programs dealing specifically with suicide with activities that promote mental health. It should be noted that the effectiveness of suicide prevention telephone lines and advertising campaigns focussing directly on suicide has yet to be proven from a scientific standpoint. There may be certain dangers associated to this type of prevention. Instead, we should focus on mental health promotion campaigns for families and young people, screening for major depression or the effects of drug and alcohol consumption.
The treatment of depression may not only reduce suicide rates but may also have a significant impact on public health by reducing depression-related problems. In addition, such treatment will have an effect on future generations that are at risk.
Finally, both clinical and scientific data support the concept whereby the diagnosis and medical treatment of depression should be viewed as essential components in any suicide prevention strategy, highlighting once again the role of medical teams in the community and the importance of their training.
As far as research is concerned, we should focus on biopsychosocial research and study suicide deaths in young people throughout Canada to improve our understanding of the way biological, genetic and psychosocial factors are interrelated. We have to ensure that there is a way to obtain feedback in terms of results and subsequent recommendations from the doctors treating youths who have committed suicide.
It would be interesting to study the symptomatology of mental illness in young people because often the clinical cases are atypical when compared to adult clinical cases. Furthermore, it would be interesting to study the impact of our treatment on mental illness in young people, particularly as it pertains to major depression, alcohol and drug abuse and behavioural problems.
Are our treatments delivered effectively? What do we know about the quality of services and treatment provided to young people? Should we be studying what happens to these young people who have tried to commit suicide, further to their trip to the emergency? Does the young person and his or her family follow the proposed treatment?
It would be interested to study the way that health and social services are organized across Canada in terms of continuity of care provided to children and teenagers with mental illness, including the transition period when the young person begins receiving services as an adult. This is often a time when the youth protection services provided to children up to the age of 18 come to an end.
I would also suggest that you take a look at the clinical position of child and adolescent psychiatrists that was prepared by a special committee looking into our conduct as such in Quebec. This position was supported, in writing, by 115 child and adolescent psychiatrists. I have appended this position paper to the document.
[English]
The Chairman: Thank you very much, all three of you. I should like to ask all three of you a fairly broad question.
I was surprised by the theme underlying each of your presentations. Ms. Massad said that there was little data and no uniform approach to diagnoses for a 100 per cent preventable situation. Dr. Beitchman focused on the need to develop a national action plan. Dr. Renaud talked about the great amount of research required.
I am trying to understand whether the real problem is that we do not know what to do or that we know what to do but we have not the foggiest notion how to get all the players coordinated. I am stunned that the country does not know the incidence of fetal alcohol syndrome.
Health Canada put out a national framework for an action work plan, which is more or less a year old. We almost seem to be back at the stage of talking and not doing. As I listen to you, this appears to be a problem that needs some action, not just talking.
Is it that we do not know what to do? Do we not know how to get all the players to do it? I would happy to here any views on that.
Ms. Massad: It is true. We do not collect data on FAS nationally for many reasons. It is a fairly new field of study. There has not been a consistent approach to screening and diagnosing this disability. Health Canada is currently working on standardizing the approach. We are working with clinicians and experts in that field. We are working with provinces and territories. There are multiple stakeholders involved, making it complex. We are currently working with them to standardize it.
Once we have standardized guidelines, we will be able to collect better data so that we have a better indication of what the picture is in Canada. That will then translate into programs and services. There is still a bit of work to do in that regard.
Dr. Beitchman: The issues are complex and involve multiple jurisdictions. There is not one easy thing that can be done. There are many things that can be done. I do not want to give the impression that nothing is being done, but it is not enough. More could be done in a more coordinated way.
I was talking earlier about the need for collaboration and coordination between and across sectors. An example is a child who is having behaviour problems in the school. The school wants to know what to do with this kid. To offer this child the best kind of help, you need to involve the Department of Education, the Ministry of Health and the Ministry of Family, Community and Social Services — at least in Ontario. The problem is each ministry has a different idea about its role.
At one time in Ontario, the schools had resources to work with these kids. Funding has been cut back. They do not have it any more. Part of the pitch is to work towards developing a more integrated system. We can say that across the board, not just locally in Ontario but at all levels.
When moving an individual from an acute care setting into the community, you are moving to different providers. The funding system is different and you have to start all over again. It is difficult to provide the continuity of care that is necessary. We need the political will, the resources and the vision about how this should happen.
I was talking also about health promotion. We know that that can work. There are all kinds of things that can be done.
The Chairman: Look at the success of anti-smoking. It has helped. It has not solved the problem.
Dr. Beitchman: We will never have enough clinical people to provide care in a timely manner for everyone who needs. There are too many in need.
Therefore, we must do everything that we can to reduce the development of the illness in the first place. We should engage in a national plan around health promotion and illness prevention. Some of it is already being done.
We need to increase the number of health care providers. There is a shortage in every area. We need to increase not only the numbers but also the quality and interdisciplinary training.
We know what to do, but who has the resources and the political will. What is the focal point?
That is why I was talking about a national agency with clout that could pull the relevant players together and establish policies, guidelines and standards that people will work towards so we will have models that will work. There is much that can be done. Much is being done, but it is not enough.
[Translation]
Dr. Renaud: I fully agree with my colleague because this is a complex problem. This requires that health care and services be coordinated among the various departments to which you referred. This is why we try to turn to the first line, namely that general practitioners. This is also because thee are not enough pediatric psychiatrists right now; I think that there are about 130 pediatric psychiatrists in Quebec. Clearly, we cannot meet the need and, in the past few years, few people have elected to become pediatric psychiatrists given the difficult situations we see daily in the clinic.
Consequently, we have to turn to the community, to the general practitioners. To do that, we have to support these general practitioners because they are often caught off guard. They also have to learn to work as a team because mental health in children is something that is done as a family. Another aspect that we try to deal with is the use of common language amongst the various stakeholders. People working in social services, education and child psychiatry do not always see things the same way. We try to come up with a more coordinated approach and this is often achieved through training where we come together to share clinical examples in our daily practice.
[English]
The Chairman: I hope that you will think about this. It follows through on what Dr. Renaud said. This is committee is trying to solve practical problems; we are not seeking perfection.
If you have the situation that Dr. Renaud just described where various groups have different views as to what should be done, surely the thing to do is to adopt one of those points of views even though some people will not like it. By adopting one point of view and taking action is better than trying to get everyone to agree. This is not dissimilar from federal-provincial debates where nothing happens while you await unanimity.
I would like you to think about what this committee could do to move from everyone trying to get agreement to action, even if in your opinion the action is only about 60 per cent right. It would be better than where we are today.
Please think about that and let us know. That would be helpful.
Senator LeBreton: You have given us valuable information. Dr. Beitchman, my first question is for you. You mentioned in your response to Senator Kirby that the single most important thing the government could do is establish a government agency. Could you give us an example of an agency that exists presently that would give us a framework? Is there an agency either federally or provincially after which you could model such an agency?
Dr. Beitchman: I am not sure I can. I am thinking about a group that has the sanction of the government and the authority and resources to advocate about all these kinds of issues we are talking about today. Such a group would bring experts together who can establish demonstration models, policy frameworks or advertising campaigns — any one of a number of issues.
Earlier we talked about the prevalence of fetal alcohol syndrome. Such an agency could advocate collecting this kind of information. That is the type of think that I am suggesting. Additionally, it should be done with a national scope and involve as many of the Canadian jurisdictions that can or want to participate.
You are in a much better position than I to identify models within government that have succeeded in doing that.
Senator LeBreton: Or perhaps in other countries as well.
Dr. Beitchman: Yes.
Senator LeBreton: Ms. Massad, I was surprised by the data. I realize it is relatively new data because I don not believe any of us heard the term ``fetal alcohol syndrome'' 15 or 20 years ago.
When you are compiling data, are you tracking children born in the 1960s or 1970s — that is, in decades? I think that when most of us had children, it never occurred to us. I hope none of us drank too much, but if anybody had a beer or two that they somehow or other were going to end up having, years later, this guilt trip because of some problem their child had because they went to a wedding and had a couple of drinks. I suppose in society there has been more alcohol use, but are you able to track the incidents by decades? How will you get this data?
Ms. Massad: That is a good question. I think it has been difficult to track by decade. It would be very difficult to go back more than 30 years unless they were diagnosed as adults.
The syndrome was first diagnosed in 1973. There is no standardized way of collecting this. Pockets of communities have started collecting it and there is no consistency. That has been done since 1973. There are no studies prior to that year.
They have interviewed people in the age range of 20 to 51. That would fall into the previous decades. However, no conclusive data arose from those interviews. The recent data is not conclusive.
The problem we are facing is trying to get consensus on the definitions under the spectrum of fetal alcohol syndrome or fetal alcohol effects as well as consensus on how to diagnose.
Senator LeBreton: You have to work with when you can identify and start from there.
Ms. Massad: The numbers may be higher than what I am giving you. They probably are.
Senator LeBreton: I was surprised. I thought they were low when you mentioned them.
Ms. Massad: That is for fetal alcohol syndrome, but if you were to look at the whole spectrum of disabilities under the umbrella term FASD, it would be greater than that.
Senator LeBreton: You talked about the national framework for action. What stage is it at?
Ms. Massad: We have completed the consultation. They will be putting the information together to work towards prevention and improving the quality of life for these individuals. That is the goal of developing this action plan.
Senator LeBreton: What is the next step? Will you complete it and try to implement?
Ms. Massad: Yes, we will try to implement. There are several goals within the framework that we will be addressing. Screening and diagnosis is one of them, and we will be working to implement those.
Senator LeBreton: Will you bring all the groups together? Will you be planning a national launch? How will you take it off the paper?
Ms. Massad: I do not think we have actually determined that yet.
The Chairman: What is your time frame?
Ms. Massad: I believe one year. It started last June. As the others were saying, it is difficult to get everyone at the table, and it is a complex issue with many stakeholders involved. It is not just the provinces and territories. It is NGOs and clinicians.
Senator LeBreton: I have one question for Dr. Renaud because her comments struck me. Sometimes, to use the old phrase, we ``throw the baby out with the bath water.'' When we were to school there were guidance counsellors and school nurses. Have the cutbacks on the provincial education systems severely limited the ability for intervention? Is that part of the problem — not being able to recognize the problem early on in a young person's school life?
[Translation]
Dr. Renaud: Yes. People tell us that the teachers who see the children after the school day can tell us whether or not a child is okay or not. However, they will say that the social worker spends only two days a week in their school because the other two days are spent in another school, or else, they say that the social worker is absent this week due to illness. This is the situation that these people experience.
We tried to set up a coordinated intervention project through a network of resource persons to contact. Knowing who the players are makes exchanges much easier. Sometimes a simple telephone call enables us to verify a few things. That, in turn, allows us to quickly reassure people or advise them that it is important to take other action. School officials do not always know when it is time to get the parents involved. Sometimes they worry about violating confidentiality. We tell them that, on the contrary, they have the right to violate this confidentiality particularly when it is a matter of life or death. This is even essential to help a child who does not know how to express his pain.
Budget cutbacks in education are adding, however, to the difficulties as well as the lack of time. Even children in the fifth grade of elementary schools, who are out of the regular system because they are disruptive in class, who always find themselves outside the classroom, in the hallway, are suddenly being referred to psychiatry because they can no longer attend the classes. Sometimes the child has been experiencing problems for three or four years. They finally wind up with all kinds of difficulties, language disorders or other types of problems.
[English]
Senator Cook: Thank you for this presentation. If our dream or goal is to look at national standards, I recall the national program of heart health that came to my province of Newfoundland eight or nine years ago with its standards and package. The province delivered it through the medium of community health. Health Canada had some good outcomes with that program.
Given that the provinces deliver health care and education, could we not use the same type of mechanism if we wanted to get a national standard? Would that not possibly be a stream that Health Canada could look at?
Ms. Massad: Absolutely. We are working with our partners in the community as well to develop community capacity building.
Senator Cook: That could be a practical application, even if we just had a pilot project, Mr. Chairman.
With respect to cutbacks in schools, you have a larger classroom; you lose the counsellor; you lose the physical education teacher; you lose the arts. The creative spirit of the child is gone and he or she ends up in a remedial program. If we had the storefront I dream of, with a multidisciplinary team headed by a nurse practitioner — the most human of all people — to take care of it, and to move that child back to the community health setting, we would have achieved something. We must have some linkages. Maybe the way to go is with a program like our health that had great outcomes in my province.
Senator Keon: If we were to advocate a national program or entity of some kind to deal with the enormous problems you describe, where would you draw the line in the age group? I know that is a difficult question; I do not want you to have to give three different answers.
Dr. Beitchman: I am not sure I know the answer to that. I think the people involved should debate the issue and try to determine an appropriate age range. Traditionally, the age group used goes up to the end of adolescence — age 18 or 19. I do not know whether that is the right age. I would guess the age range would be somewhere between 18 and the early 20s.
That would be one of the issues that would be part of a spirited debate, partly depending on what the objectives were and what else was available, and how one went about implementing it. In some cases, it may be best that it be up to age 18. In others, it may better to extend beyond 18. I would not want to suggest that we set an arbitrary age, but that is the kind of range.
It is important that there be some identifiable group that takes responsibility for the whole range of mental health issues in children and adolescents. I do not think anybody is doing that now.
We have mental health organizations. Much of the focus — and perhaps rightly so — is on adult mental health disorders.
Who is concerned about the children and adolescents? They tend to get pushed aside. That is why it is important that there be a strong advocate to move that agenda forward. It has potential for payoffs in many different ways, as I was alluding to earlier.
Senator Keon: I raised that because I am involved in health myself and have been all my life. I am concerned about adolescents between the ages of 17 and 22, because they are cut loose. This could be disastrous for children with suicidal tendencies. Imperfect as it may be, I would think that is something that does have to be addressed. Would you care to comment, Dr. Renaud?
[Translation]
Dr. Renaud: One of my colleagues became ill and had to stop working last year. Meanwhile, his patient turned 18 — this was a youth with significant mental disorders — and he committed suicide once he was transferred to adult psychiatry. The youth's mother came back to see the psychiatrist once he had returned to work in order to talk to him. The mother said that everything had been done properly by this psychiatrist's replacement, but that the services provided in adult psychiatry were administered in a rigid way that perhaps we do not have in child psychiatry, where we accept things differently. When we are dealing with an adult, we tend to tell him to be responsible for himself; in some instances the family is not stressed so much because we are focussing on autonomy. This boy was not entitled to welfare. He therefore did not have very much money to buy his medication even if he could have been entitled to drug insurance. The first time a person does not take his prescription and is very fragile, he becomes more unstable and this can trigger a relapse, if the person is lacking in confidence, he will not go and see the psychiatrist to say that he needs to be hospitalized. Several factors came into play, resulting in this boy's suicide at the age of 18 and a half or 19.
[English]
Ms. Massad: In respect of fetal alcohol syndrome, it is difficult to cap it at any age because it is a lifelong disability. This is a problem. After a certain age, they fall off the radar and end up on the street, in prison or dead. This is the reality of this disability.
Senator Keon: I would like to push it a little further. It would seem to me, if, for example, there were an agency that dealt with this and we could define the age group that it would deal with, we could then work at developing a transition for these people into the next spectrum of care.
However, if it is like the health discipline in which I worked, they just get lost when they turn about 17 and they show up at age 22 or 23. I would really worry about that happening in mental health.
I would like you to respond again. I fully appreciate what you said, Dr. Beitchman, but this is a truly serious problem in our health care system.
Dr. Beitchman: It is clear that this age group represents a group at high risk, towards the end of adolescence and into the mid-20s, early adulthood. Someone needs to take responsibility. They are often referred to as transitional age kids. They are too old for the traditional adolescent programs and they are usually too young for the adult programs. People working in the adult sector do not understand them well and are not often interested in working with them. People working in the more traditional child areas feel the same way, looking up at them. There needs to be a group that takes responsibility for them.
The Centre of Addiction and Mental Health, where I also work, has incorporated the youth addictions group with that age group as part of our overall child, family and youth program. We have taken the step of recognizing that that age group needs to be addressed in a specialized way.
If we are lucky enough to be able to organize this national body, I do not want to prescribe for them how they should work or what they should do, including the boundaries of their age group. You have made a valid point and I would be in support of including that age group in this group.
[Translation]
Senator Pépin: If I understand you correctly, when an individual in therapy reaches the age of 18, he changes categories and must consult psychiatrists who treat adults. Normally, when someone is in therapy and things are going well, we say that it would be better not to transfer him.
Dr. Renaud: We cheat a bit. We still continue seeing them and we start receiving letters from the administration telling us that, in theory, if this person were hospitalized, he would have to be hospitalized in an adult psychiatry unit. Currently, we would not be allowed to hospitalize such individuals in the child and adolescent psychiatry section.
Senator Pépin: That does not make sense.
Dr. Renaud: Yes, but that would also take away beds from other children who are younger.
Dr. Renaud: One day the transition will probably have to be made. What we need to do is prepare it well in advance. We are trying to think about this transition when we provide care to someone who is, for example, 17 years old.
Sometimes we try to admit these young people in adult psychiatry so that the first contact is already made there. But some clinics are very inflexible and refuse to do so. It is clear that we need to prepare for this transition and ensure that there is some flexibility between the two services.
Senator Pépin: For some of them it will be much easier than for others. It is a bit like cutting the umbilical cord.
Dr. Renaud: The same applies to youth in social services. At around 16 and a half they have to start preparing for the end of entitlement at the age of 18. They suffer from extreme emotional deficiency. We have set up a number of alternatives services in the community to help them.
[English]
Senator Cordy: It is sometimes overwhelming when we hear such information as this because we wonder where indeed to begin. I agree that children's mental health is the ``orphan's orphan.''
I am interested, Dr. Beitchman, in your thoughts on starting an agency or a ministry to deal with children's mental health. Could we take that one step further? In your presentation you talked about families being overloaded when faced with a child who is suffers from mental illness.
Before I came to the Senate, I was an elementary school teacher. Throughout my career, I had students who suffered from autism or a number of other illnesses. Families were indeed overloaded but they were also frequently in conflict because, as you said earlier, they were dealing with so many government agencies. A teacher must deal with the school psychologist, the speech therapist, and the children's hospital — in my case, it was the IWK Grace Health Centre in Halifax — and the parents must deal with the school system. In some cases, they receive conflicting information. The parents are trying to be good parents and do the right thing but they are not quite sure what the right thing is to do.
In fact, the result is a family in conflict. I heard one of our senators, an expert in child issues, say that many of these families need a family advocate to work through the system. In that way, parents are able to ask questions and receive answers from one individual — the family advocate.
Sometimes in meetings, parents are faced with a panel of experts, who certainly do not mean to be hostile but the parent is almost intimidated by them because of their expertise.
Your comment about families being overloaded, from my experience, is certainly true. What do you think about the idea of having a family advocate? Would that be connected to an agency or to a ministry?
Dr. Beitchman: Senator Cordy, I certainly recognize what you are describing. I have seen it myself clinically with families. Unfortunately, it happens often, not only in the school setting but also in many clinical settings where, unfortunately, the so-called experts failed to communicate the child's and the family's needs in an empathic and therapeutic way.
In many instances, the families and the child do need an advocate — someone who can interpret what they are hearing to help them assess the information and its value. In some places, it is done better than in other places. There is a value in having an advocate. I think that families themselves would have to make the decision about whether they want or need an advocate. Where one could be made available, I would certainly support the idea of someone who knows the system, who knows where to go, who knows who to ask and who could work their way through the jargon on behalf of the parents and the child.
For example, a national agency or a national advocacy group of some kind could advocate for a cadre of family advocates, as it were, to support and work with consumers at all levels.
Senator Cordy: The family would have to buy into it so that it is not just another agency.
Dr. Renaud, you spoke about suicide, early intervention and risks. When I was an educator, it was frustrating to find a child at risk or family members at risk. When this occurred it was brought to the attention of the administration. The first step was a six-month wait for the child to see the psychologist or talk to the family. If the psychologist agreed with the teacher's assessment, there was another six-month wait to have an appointment at the child's guidance centre, or another centre, to receive help. Early intervention sounds wonderful and but it does not always happen.
Is there a way to overcome that? As Senator LeBreton mentioned earlier, resources in education have continued to be cut.
[Translation]
Dr. Renaud: That is what we are attempting to do with the protocols and the different intervention levels in the case of services. Even if the situation is drawn to people's attention, they do not quite know what to do. We do have our local community services centres, the CLSCs. Staff members at the school may be put in direct contact with the CLSC where they can find a nurse, a general practitioner and people specialized in crisis intervention.
We also have a crisis intervention team five days a week at Sainte-Justine open throughout the day. We have even hired nurses to work evenings in crisis intervention. If that is the preferred approach, then one should avoid the CLSC phase or the following step involving multidisciplinary teams of physicians. It works best when people work as a team and agree to see these young people going through a difficult period. Some people who are very good in crisis intervention will not do a thorough history but at least for the most urgent cases, they can decide what should be done and document the situation. Very often people panic and we do not have all the information that we consider necessary. Once decisions are made at a certain level, it will be necessary to follow up at another level. Sometimes they say to us: ``We are going to emergency, we haven't got an answer and they are telling us that it is not serious. Hospitalization is not necessary.'' But what do we do next? The youth comes back to our service. We do have liaison nursing staff to ensure continuity and sometimes a phone call will allow for a quick resolution of certain situations.
Because of this we no longer have to have a waiting list in our child's psychiatry out-patient clinic. We prefer to put time in the out-patient clinic rather than emergency. Working conditions are better and there is a greater impact on families. We are much more calm and not in the same kind of situation.
Obviously more staff is required in schools. The staff must feel that they can count on support. It is not the school's principal who should be doing this job, it is up to the health system to find out what is happening and the best way of providing service. The health boards do not necessarily give us a mandate to do so.
We can see where the problems are but we cannot claim that it is not our responsibility to tell others what to do. So we try to organize things as best we can but we do not necessarily have the authority to impose this kind of system. If there is a two-year waiting list in certain clinics in Montreal, who is going to deal with these young people? Parents come to see us and tell us that we handle things more quickly. But it has only been for the past two years that things have been expedited in this way. We realized that things had to change in order to provide more specialized and more complex services.
[English]
Senator Cordy: Ms. Massad, I am confused about the data collection. Are you collecting data or not? I got mixed messages.
Ms. Massad: We are not collecting it nationally and we do not have a national collection of data. There is no consensus on how it is collected. It is pockets of communities that are collecting data, using different diagnostic tools and screening. There is no consistency. That information is compiled and used as an estimate.
Senator Cordy: How can you determine whether or not your programs are working if you are not sure how many cases you have?
Ms. Massad: That is one of the challenges we face. Until we have standardized the diagnostic guidelines, that will be a struggle. Once we do that, we will have a better indication of how our programs and services are reaching people and how to improve access to programs.
Senator Cordy: What is the hold-up?
Ms. Massad: Primarily, there are many stakeholders involved and it is sometimes difficult to get consensus with provinces and the territories. There are many people at the table.
As I mentioned, we are looking at a one-year time frame on finalizing our framework. We recently completed consultation and it has been a lengthy process. It takes time, due to the number of individuals and stakeholders involved.
Senator Fairbairn: Like my colleagues, I find it difficult to figure out how to ask questions because this is so complex and overwhelming. Therefore, I will go to an issue that I know and have been working on for some time and use it to enable you to help me understand some of the other things we are talking about.
I have been involved in literacy for a long time, both at the adult and family levels. Only now, in the last five years, has the issue of family literacy become perhaps the hottest button in this very large problem about which Canadians do not know much or wish to believe exists.
When you get into the family literacy area, then you are getting into the children, not just the adults.
It has only been since the late 1980s that various learning disabilities were actually recognized by the federal human resources department as legitimate disabilities. I am looking at what we have here, when you are talking about behavioural disorders, ADHD, ADD and that kind of thing.
How difficult is it to categorize the difference between a learning disability and ADD for instance? I know a person who has gone around in circles having been screened and told it was learning disabilities and that there were ways of dealing with that — although not broadly dealing with it. Screening is not still a nationwide, easily accessible thing for children. The answer often comes back that the learning disability is a result of the ADD or ADHD and that Ritalin is the answer. It is a vicious circle, with the person you want to help in the centre. It is often difficult for families and schools because there is not the expertise to identify exactly what the problem is to help the child.
I would like your views on this, because it seems to me that people often get themselves off the hook by saying, ``Well, it is really this and not that, so you have to go is see somebody else.''
Dr. Beitchman: Thank you. That is an interesting and important question. Part of the problem is that children who have learning disabilities and ADHD, for example, often have overlapping problems. There has been a long controversy about how to define learning disabilities. Educators and professionals working in the area agree that children functioning below their expected grade level should be considered learning disabled and should get the extra resources they need. That gets caught up in a political issue, because some jurisdictions will provide extra resources and funding for learning disabled children, whereas others will not.
There are also some new scientific advances in how people diagnose learning disabilities. There is a series of tests that educators and psychologists use to diagnose learning disabilities. One thing we have learned is that what is thought to be the basis for learning disabilities — primarily reading disabilities — is based on difficulties hearing and being able to recognize certain sounds. For example, if a child has a word to read that has a blend in it, a ``BL'' or a ``PH'' sound, they do not hear the sound, so they have difficulty recognizing it. That is thought to be related to phonological process, or being able to deal with the different sounds that we hear. It also appears there may be genetic basis for some of this. There have been some genetic findings discovered in families with children who have learning disabilities.
There are good scientific data on what reading and learning disabilities are and good scientific data on what ADHD is. Part of the problem is that there is a passing of the buck that occurs. I have had that experience myself clinically. However, I have been around long enough to know when this is happening. One professional will say it belongs in his bailiwick and another will say it belongs in another bailiwick, where in fact both issues may be present. The child can have a learning disability and also be ADHD. People with ADHD will have problems with impulsivity, attention and managing their behaviour. If they also have problems reading, distinguishing sounds and hearing what the teacher is saying, those children will become even more troubled and have more difficulties.
Earlier, Dr. Renaud talked about a multidisciplinary approach. The example you gave is a perfect instance of where a multidisciplinary approach is needed. It may be a speech and language problem, where the child has problems recognizing sounds. It may involve working with phonetics and recognizing words on the page, helping the child to learn to read. It may also be that the child can use some Ritalin. However, the Ritalin will not solve the phonological processing problem or the reading problem. It may help the child attend better, and learn better because he is attending better, but it will not solve the learning disability. Those problems often coexist. To provide the best possible care and treatment for a child, you need to provide care for the reading disability in addition to care for the ADHD. It does not have to be just ADHD. It could be any or all of those things. These children are often best helped in a small class with a concentrated attention. When school systems run out of money, these kids end up suffering.
Senator Fairbairn: In some jurisdictions, there is also the question of poor accessibility to screening.
A few years ago, the Canadian Association of Optometrists wanted to be helpful with literacy. They offered, over a two-year period, to do free eye testing and glasses for children. It was amazing. The reports came back of the number of children who had been branded as bad kids or learning disabled and it turned out they could not see very well.
Getting to the heart of the matter, how can we as a country, as a government, as a profession, find a way to be able to detect this across the country? It seems to me that much progress has been made in how you define these things. If you get children in the right place, they can be given substantial assistance that helps them to be able to function better.
How can we work together to get a system that will enable us to do that?
Dr. Beitchman: We certainly need to recognize and identify the issues. I was thrilled to be invited here today because I have the opportunity to share with you my concerns about the state of children's mental health and what can and should be done — bearing in mind that we know a lot of what needs to be done.
My hope is that through the work that you and your colleagues are doing, you will be able to advance the agenda and help government agencies to recognize the importance of these issues and tackle them in a systematic and organized way. Advocate as vigorously and strongly as we can to put this on the agenda. When governments cut back funding, there should be an outcry, ``You should not be doing that. These are the consequences and this is what is going to happen.''
Senator Fairbairn: You are right, that is what we are here for. We can advocate. However, we need to keep in close contact with people like you so that the advocacy has a form that makes some sense and that not only professionals or politicians buy into it, but that the parents and family also buy into it. That is still a big problem; they do not believe there is the way ahead in many cases, or if they do, they have not the resources to access it.
Senator Robertson: I am glad you are promoting a national agency for coordination. This is dear to Dr. Keon's heart. He has always felt that we should have a Surgeon General, by a different name, obviously, in Canada. I hope in our discussions that we are not going to have to wait while we reinvent the wheel.
As an example, the U.S. Surgeon General has developed a national action agenda for children's mental health. There are other good programs going on in other countries. We need to take a good look at them so that we can move expeditiously in this regard.
Dr. Beitchman, you stated that most adult mental health disorders begin in childhood. What percentage of those mental health disorders that begin in childhood are genetic, and what percentage are caused by an environmental reason or dysfunctional families? What is the breakdown?
Dr. Beitchman: You ask a very good question. The short answer is that no one knows.
Senator Robertson: Really?
Dr. Beitchman: That is the short answer, but the situation is very complicated in this regard. A recent study looked at the very question you have asked. They were following a group of children through adulthood, a large proportion of whom had been physically abused and maltreated. Some of those children became aggressive and violent themselves. They were also able to get a genetic profile on these individuals.
They found that only those individuals with a particular genetic background became violent, even though they had all received the same kind of maltreatment by their parents and guardians. There is an interaction between genes and environment, and they go together. We do not know enough at this point to say what percentage is genetic and what percentage is not. We know there are some conditions for which genes play a bigger part and others that appear to play a less important part.
We heard earlier about fetal alcohol syndrome. We know that there are serious devastating consequences and we know that if a child is born with FAS it is not genetic even though the damage done occurs in utero. In other conditions, such as schizophrenia, it is believed there is a high genetic loading, but we know that identical twins are not perfectly concordant. We know that one twin in a pair may have the full syndrome of schizophrenia and the other not; therefore we know there is an environmental contribution. The environmental contribution can be in utero or can occur in the course of the child's life. Science is advancing in trying to tease out those areas where there is a genetic component and an environmental component. Similarly, there have been studies isolating certain genes that have been associated with people who have problems with reading and reading disabilities. Obsessive-compulsive disorder is thought to have a high genetic loading.
However, there is almost no disease that I know of in mental health that is entirely genetic. There is always some kind of environmental component. Even where there is a high genetic loading, there are many things that can be done early on to ameliorate and mitigate the genetic loading effects, whether it is modifying the environment or supporting the individual. I am not suggesting that you have implied this in any way, but there is sometimes a thought that there is a genetic determinism. That is not true. The genes provide a susceptibility. Part of what science is doing is identifying where those susceptibilities are and trying to reduce it. Studies of ADHD have identified genes in the dopamine system, one of the brain chemicals. This particular genetic make up may only account for 3 per cent to 5 per cent of the incidence of ADHD. That is a small percentage.
That is not the end of the story. They will likely find other susceptibility genes, but other things come into play. We will have a more complete answer one day. We are moving in that direction.
Senator Robertson: Do you believe that we could be doing more preventive work with mental health for children? Practically everything that I read is about treatment. If the environment would help to reduce the development of those illnesses, perhaps we should be spending time on prevention.
We all know the old arguments we have had in various legislatures trying to solve child poverty. A child lives in poverty because the parents are poor. That is where the concentration issue exists.
What are they doing at medical schools to try to better define prevention, treatment and identification of these issues? Is there no research happening?
Dr. Beitchman: There is absolutely no doubt that much can be and is being done to prevent the development of mental health disorders. We should educate people about the dangers of drinking alcohol during pregnancy. We know that that will have an impact. Antismoking campaigns reduce the likelihood of development of additional substance abuse problems. Those are all part of a health promotion/illness prevention agenda.
There are many models in the U.S. such as Head Start and early intervention programs with single parent families and families in poverty. In Ontario, there are programs that send visiting nurses into the homes to work with mothers of young children. All these contribute to reducing a wide variety of impairments. Some reduce rates of recidivism. Others allow the kids to stay in school longer or lead to fewer acts of delinquent behaviour. All those things contribute to a form of preventing and reducing mental illness.
Much can be done and a lot more needs to be done. Perhaps I am repeating myself but if we had such a national body, it could take the initiative in identifying targeted programs that we know work. They could be introduced to various communities across the country, in an Aboriginal community or anywhere in the country.
Those things should be done. They are being taught at various levels. I am not familiar with other universities, but I know that we do talk about illness prevention, health promotion and early intervention at the University of Toronto.
[Translation]
Dr. Renaud: To put this lack of progress in child psychiatry in perspective, it should be realized that it is only in 1997, when I was doing my fellowship at Pittsburgh University, that the first study was published in Texas demonstrating that antidepressants of the Prozac family were better than a placebo in treating major depression among adolescents. It is very recent. When I talk to child psychiatrists who have much more experience than I do, they are quite optimistic about what has been achieved. For a long time, depression among adolescents, for example, was seen as an adolescent crisis. It was just something to be waited out and not considered a reason to see a psychiatrist. There has been a great upheaval since. When I feel discouraged about the suicide situation, people tell me that lots of things have happened over the past 10 or 15 years.
We have to realize that mental illness is found among children and adolescents. We have reached a turning point where, realizing that it does exist, we must decide what we are going to do in the way of prevention and how we will promote different programs. For a long time, there were various theories and the family was not perceived in the same way. So progress has been made.
I do not know whether Dr. Beitchman has any comments to add. There was a big change with the arrival of medication that was potentially effective with children and adolescents and not necessarily in the same way with adults. Some people want to apply in the same way. I don't think that can be done. That is something that is fairly new.
[English]
Senator Robertson: It good that there is room for progress. We have a chart that was prepared by Waddell and Shepherd that shows the prevalence rate and approximate number of mental disorders in children and youth in Canada. Is there a better breakdown of this type of information by province or region? Have you advanced far enough to provide comparative information by province or region?
The Chairman: The data to which you are referring is data that our researcher pulled together. It is not available by province.
Odette Madore, Researcher, Economics Division, Library of Parliament: The data is for British Columbia. We will hear from Dr. Waddell tomorrow.
[Translation]
Dr Renaud: I have indicated in my document, that was supposed to be translated, the prevalence of various types of mental disorders among children and adolescents in Quebec. You should have it in this material, the brief that was tabled for translation.
[English]
Senator Léger: We heard much about coordination. Dr. Beitchman, you were hoping for an agency to be created by the government. For this coordination, should we also have an agency for the experts whereby they could bring together all the knowledge on this issue? The areas of expertise should be treated separately —especially before we get to the child or the patient.
The students in school have to go through so many specialists before they can get any answers. Should an agency then be also created where the experts get together before we have a patient at the end?
Dr. Beitchman: That is a terrific idea. There was a question earlier about a model for such an agency. In the U.S, there are the National Academy of Sciences and the Institute of Mental Health. Some of those groups are proactive. I have been invited to attend some of their policy forums and scientific meetings. They take positions on issues and follow that by organizing programs or projects.
I am not suggesting that they will try to coordinate it across the U.S. but they will take the initiative to establish at least a Head Start program or other related program, as one example.
Therefore, whether it is through an agency or a department, there must be some means bringing together the experts and knowledge that could speak with authority. I think that would be a wonderful idea.
That is not to say that there will only be one idea after all this is brought together because there are competing ideas. It would have to be based on the best evidence available and it would be brought forward. The consumers and the user groups would have to be able to make judgments about what they think is the best information available.
Ms. Massad: Health Canada has established the Centres of Excellence for Children's Well-Being, which are mandated to enhance our understanding and responsiveness to the physical and mental health needs of children. Operating out of universities, there are five of these centres. One focuses on early childhood development; another on youth engagement; another on child welfare; another on children with special needs in rural and remote Canada; and the fifth one on children in Prairie communities. They are set up to refine our understanding of mental health.
The Chairman: Are they part of CIHR?
Ms. Massad: No, they are not. They were set up in October 2000 and they have a five-year mandate. They collect a great deal of data and do much research on these various issues — early childhood, for one example.
Senator Léger: I was referring to the specialists. Increasingly, we are researching the detail — specific areas. This is necessary. However, I feel that each specialty is separated.
I am referring to a unity among specialists before the final picture is created. I am wondering if there could be one answer so that the child does not have to go to six different experts. I find there is confusion.
The Chairman: You and I are on the same wavelength. When this group began its work on the overall health care system, we were surprised to discover the various silos that exist within the system. In the little bit that we have done on mental health, we have found that there are more silos in that business than in the rest of the health care system put together.
Senator Léger is trying to get at how we break those barriers down from the user's standpoint? Is there some mechanism that ought to pull the various segments together? You may not have an answer today but this problem is not solvable as long as the silo mentality continues to exist.
Dr. Beitchman: If there were a recognized national body of some description that had the authority to distil knowledge, they could put out information documents that anyone could read.
There was a time when people thought that facilitated communication would cure autism. Those of us who knew anything about facilitated communication and autism knew it was a dream — a nightmare, actually. A national body with some authority and some expertise, they could put out information and make it available to anybody who wanted to know what is happening in the treatment of autism. Is facilitated communication the treatment of choice these days? With good information available, they would know that it is discredited.
There will not be clear-cut answers about everything but people can be given information about what things are most likely to work.
We talked earlier about depression and medications. We know there are certain antidepressants that can help. However, we also know there are forms of therapy that do not involve medication and they too can help. People need to know that so when a doctor or therapists says their child has to take a drug or he will not get better, they can point to information about alternative options that do not involve medication.
I do not know where they will get this information now unless they happen to chance upon someone who is knowledgeable and cares enough to give them an answer.
[Translation]
Senator Léger: Dr. Renaud, you said that at the age of 18 a child automatically enters into the adult category. It must happen sometimes in your practice that you cheat. Do you sometimes apply this spirit rather than the letter?
Dr. Renaud: That is what I do. But on the day when the young person is to be hospitalized, I accompany him or her so that I can telephone the place where they are going. But if I have 20 patients in this situation, then of course I would have some questions to answer. I have some girls who are 18 or 19 that I will probably keep until they reach the age of 20.
Senator Léger: That should probably be recognized and accepted at the highest level of the medical profession.
Senator Pépin: Dr. Renaud, I see that there are more than 60,000 children in Quebec that require aid annually.
Dr Renaud: In pediatrics. Out of this group there are 600 consultations in child psychiatry. Such consultations occurred as a result of an emergency request by the physician after seeing the child and the family.
Senator Pépin: We can also see the shortage in child psychiatry. I gather that there are only 125 child psychiatrists. Waiting lists can be as long as two years?
Dr Renaud: It depends on the sectors. Right now, we don't have any. We have been able to do away with the waiting list. In the Montreal area, I have friends who are child psychiatrists and have a waiting list of 300 people.
Senator Pépin: Sainte-Justice does not have any waiting list. Screening in school is difficult because there have been staff cutbacks and when they reach the age of 18, they are left on their own.
Dr Renaud: Some adult psychiatrists will take them. We should not generalize. But there is a period when they are caught in between.
Senator Pépin: We have a tremendous amount of work. You talked about suicide among adolescents. Quebec is a province where suicide is the first ranking cause of death.
Dr Renaud: Yes.
Senator Pépin: Do we have suicide statistics for young Aboriginals? If we were to compare the figures for young Aboriginals and young Quebecers —
Dr Renaud: It is even higher in the Northwest Territories. I have the statistics here. It is also because the population is low. As isolated population, the effect of suicide is somewhat contagious. For example, when a first suicide takes place in a school, there maybe a certain degree of imitation not involving mental illness. In Aboriginal communities, where there are various factors that you are aware of including substance abuse, if someone commits suicide, the impact can be felt by other members of the community and there can be a copycat effect.
Senator Pépin: You said that there were some risks associated with prevention telephone lines. Can you tell us a little more about that?
Dr. Renaud: It is a fairly controversial subject. I work with people who are great believers in this type of intervention. However, there is no clear evidence that they work. The suicide rate is higher among boys than girls and, when it comes to adults, more men than women commit suicide. These are not people who will call for help.
You cannot solve the problem of suicide with a help line and investing money in this type of approach is not the solution. We are in the process of studying these prevention telephone lines in the United States and our research may shed light on the issue. In Europe as well, people are wondering whether this type of approach is the right one. Some people call help lines a lot, but one third of callers are problem patients because they will call to say they will commit suicide, but in fact they are simply calling to talk to someone else on the phone.
It is a good way of helping these people, but I do not think it is an effective way of preventing suicides. Help lines may be beneficial to some people, but they will not help everyone.
There are other types of telephone lines, such as Tel-Aide, which help people with all kinds of problems. This type of intervention is much better to promote mental health in school, to deal with stress, to encourage physical exercise and to reinforce the importance of socializing with others.
In New York, according to Shaffer, the increase in the number of suicides may unfortunately be due to the fact that people specifically talk about suicide. Very few people outside of him have specialized in this area of study. It is very difficult to prove and people have to be careful before stating figures on this type of subject.
Senator Pépin: About 20 years ago, psychiatric institutes and hospitals were closed. I knew them well because I worked there. Today, people are saying, and I believe it, that many homeless people have mental health problems. I am thinking of the Institut Philippe Pinel in Montreal. Do you think that there is a fairly high number of young delinquents with psychiatric problems who have not received any treatment?
Dr. Renaud: We researched the files of social services and found that approximately one third of young people under the age of 19 who committed suicide had been in the care of or were in the care of social services when they committed suicide. Fifty percent of them were receiving services when they committed suicide. These young people were perhaps in foster homes or in institutions. These were young people who were in the community, living with a foster family or with their parents, and who were being looked after by youth protection services. These young people are between five and ten times more at risk than the average young person. Why? Because these young people have many risk factors, such as abuse and neglect. This is often why they fall into the care of social services. They may also have mental health problems which will show up in their teenage years. These young people are often very aggressive towards others and themselves, as well. It is misleading to think that they are only aggressive with others and never with themselves or that they manipulate the system.
Senator Pépin: People often say: ``Do not drink and drive.'' As regards foetal alcohol syndrome, do you ever hear: ``If you are pregnant, do not drink''?
[English]
Ms. Massad: We have a poster with the caption ``Pregnant? No Alcohol.'' This poster is on the cover of my brief. This is something we collaborated with the provinces and territories on developing to raise public awareness.
The Chairman: I thank you all for coming. It was very helpful in getting us started. If you or your colleagues have any additional thoughts on things we can do, please keep in touch with us.
The committee adjourned.