Status of Women Committee on Feb. 26th, 2014

[The Chair, NDP, Hélène LeBlanc]

Good afternoon. Welcome to the 14th meeting of the Standing Committee on the Status of Women.

We have four witnesses on the agenda today. Ms. Cairns should arrive soon, but we can still begin our meeting. We will have to stop at 5 p.m.

[Jadine Cairns, President, Eating Disorders Association of Canada]

I'm Jadine Cairns and I'm here.

[The Chair, NDP, Hélène LeBlanc]

Oh, you are here. I'm sorry about that.

We are actually waiting for Bonnie Brayton.

Mr. Young has a point of order.

[Terence Young, Conservative, Oakville, ON]

Is it possible to get names on the screens so it's a little easier to keep it straight?

[The Chair, NDP, Hélène LeBlanc]

If we can, we will. If not, I will make sure that I identify them very well.

As I was saying, we will end the meeting at 5 p.m., so that we can have enough time to present the subcommittee's report and to make our way to the House for the vote, as the bells will sound at 5:15 p.m..

We are welcoming Arthur Boese, who is in the room. Josée Champagne and Jadine Cairns are also joining us by videoconference. I want to thank them for participating in our meeting.

Without further ado, we will begin with Mr. Boese's testimony. He has 10 minutes.

[Arthur Boese, As an Individual]

Thank you for allowing me to put on this presentation. I have two daughters who suffered from eating disorders. When I realized the severity of this disorder, I felt that I had to get involved to help these patients get good care in a timely fashion.

With that in mind, I approached Dr. Paul Garfinkel of CAMH, who was one of the leading authorities in eating disorders in North America back in the early 1980s. Dr. Garfinkel was the president and CEO for the Centre of Addiction and Mental Health. After several meetings he expressed an interest in possibly partnering with my company, Avalon Centers Inc. However, he found that he could do nothing until there was a change in the OHIP policy. With that in mind, I decided to open a pioneering facility, Avalon Centers Inc. Eating Disorder Treatment Center, in the U.S. in hopes of bringing that experience to Canada to help our patients here when the time was right. This was a multidisciplinary approach to the treatment of eating disorders. We had a not-for-profit company called Avalon R and D and a for-profit one called Avalon Centers Inc.

To build a cutting-edge partial hospitalization program, our well-educated clinical team of psychiatrists, psychologists, social workers, nurse practitioners, nurses, and art and yoga therapists needed to build the most up-to-date protocol available. In order to formulate this, we extracted the necessary information from Dr. Garfinkel's vast research. Because of all of the clinicians involved, it was a very expensive process.

After this protocol was completed, I contacted Homewood in Guelph and talked to Dr. Eduardo Perez and April Gates. Over the next few months we had many friendly and informative meetings. When they issued a contract to partner with Avalon, we gave them our confidential protocol. After keeping it for at least four months, they then decided not to go ahead.

We attended many eating disorder meetings and were a member of the Eating Disorders Association of Canada, whose president was Dr. Robbie Campbell. At one such function in Toronto, Dr. Blake Woodside told us that there were probably 100,000 eating disorder patients in Ontario and that 18% of them died. The main treatment available was Homewood in Guelph, which at times had as much as a two-year waiting list.

OHIP did agree to send us patients now and then, depending on who was in charge, but if someone, like MPP Peter Kormos for instance, called, they pushed the patient through the system.

Bellwood, in Toronto, was also very supportive and did occasionally send us a patient.

Once in the U.S. we required a state licence from the Office of Mental Health. We are proud to say we were the first to get a licence as a free-standing facility. This was four and a half years before anyone got a licence in the state of New York. It was quite a feat for us. We established ourselves in three buildings, serving partial hospitalization, outpatient, and a two-shift fully supervised group home, with approximately 30 employees in total in under 4,000 square feet of space. We treated anorexia nervosa, bulimia nervosa, and some obese patients.

In time we worked with Kevin Flynn, who obtained a budget to get OHIP to do an audit on our largest treatment centres in the U.S., ourselves included at the Avalon Centers Inc. Buffalo location. Their audit showed we were as good as the finest centres and better than most in the U.S. and only two hours away from Toronto, but still OHIP was unable to provide us with patients.

We had many meetings with 20 senators and assemblymen to obtain their support in the U.S. I worked closely with Senator Joseph Bruno, majority leader, and Senator George Maziarz of Lockport. They promised us a new 20,000-square-foot centre ready to proceed. We even had fully comprehensive drawings and land picked out. Unfortunately, funds became scarce because of the economic downturn in the U.S.

Since this is a mental disease, and wanting to help patients with their insurance coverage, we went to Washington to help obtain mental health parity with the HMOs. In Washington I ran into a colleague, Kitty Weston, from Minnesota. I told her that I had contacted Senator Hillary Clinton’s office and that she was going to come out to Avalon. But then 9/11 occurred. As it happened, Hillary Clinton was in Washington. My wife and I were fortunate enough to obtain a meeting with her, and she gave us her full support.

We also had an agreement with Dr. Thomas Rosenthal, professor, and chair of the department of family medicine, Buffalo, New York, that all graduating doctors in western New York would be trained by our clinicians in eating disorders, because this is not part of their training.

Through my dedication and personal finances only, we are happy to say we were able to save approximately 1,000 lives in the 11 years that our multidisciplinary partial hospitalization treatment program lasted. Our experience there has shown that the young patients are more receptive to a free-standing facility rather than hospital settings.

Because of my experience, I would be pleased to assist in the process of setting up similar facilities in Canada.

This is respectfully submitted.

[The Chair, NDP, Hélène LeBlanc]

Thank you very much for your presentation.

Now we'll go to Ms. Brayton for 10 minutes.

[Bonnie L. Brayton, National Executive Director, DisAbled Women's Network of Canada]

Thank you.

I've of course discovered on arriving, because I had to print everything and prepare very quickly, that there are some pages missing from my presentation, so I will start with saying, first of all, thank you very much for inviting the DisAbled Women's Network of Canada to come and present before the committee on behalf of our president, the board of directors, our members, and our staff. I also want to begin by acknowledging the Algonquin peoples, upon whose land we are gathered today.

Our remarks today will add the unique perspective of DAWN-RAFH Canada—the DisAbled Women's Network of Canada—that we bring to the table. We aim a disability, feminist, and intersectional lens on eating disorders to add to the discussion and, most importantly, the interventions that will come from these deliberations.

In the Convention on the Rights of Persons with Disabilities, article 6 identifies women and girls with disabilities worldwide as a focus of special concern—

[The Chair, NDP, Hélène LeBlanc]

Ms. Brayton, since you are missing some pages, do you want us to move on to another witness, to give you time to fix the problem?

[Bonnie L. Brayton]

Yes, if possible, as I would like to have access to the document in order to print the missing pages.

[The Chair, NDP, Hélène LeBlanc]

If the other presenters are ready to present, maybe I could ask Ms. Champagne to do so.

Ms. Champagne, you have 10 minutes.

[Josée Champagne, Executive Director, Anorexia and bulimia Quebec]

I would like to begin by thanking you for having me today, as well. It's truly an honour for me to be here. I also want to thank you for conducting a study on eating disorders. This is a very important issue.

For 14 years, I have been the Executive Director of an organization called Anorexia and bulimia Quebec, or ANEB. This is a not-for-profit organization that provides services to individuals with an eating disorder and their families, across Quebec.

Our organization guarantees free, ad hoc and specialized assistance to individuals suffering from eating disorders, and to their loved ones. We provide a help and referral phone line, prevention activities and professional training. Over the past 14 years, I have seen time and time again how important community resources like ANEB are in the continuum of supportive services for individuals suffering from eating disorders.

Eating disorders are very worrisome public health problems in terms of their rising prevalence, but also in terms of their various manifestations, which are largely unknown and often go unnoticed. Those include anorexia, binge-eating disorder and muscle dysmorphia.

These eating disorders, as you have probably heard from many witnesses who came before me, have numerous psychological and physiological repercussions on the person suffering from them. If left untreated, the disorders may result in death. Unfortunately, these types of situations have occurred in recent years.

Despite this extremely alarming state of affairs, there are very few resources specializing in eating disorders in Quebec. The limited resources that do exist are in the public domain. The number of hospital beds available for individuals with eating disorders is very low—about 10 to 12 beds throughout Quebec.

For adults, it takes a very long time to obtain specialized third-line services for eating disorders. People can wait for months, even a year or sometimes longer, depending on the seriousness of their eating disorders. For people in distress, a few days is a long time. You can imagine what a few months, even a year, can be like. The resources available to people suffering from this disease are clearly insufficient.

Faced with those kinds of wait times, some people decide to turn to private resources for specialized assistance. However, those resources can also have considerably long waiting lists and charge a lot of money for their services. So that is not an option for most people suffering from eating disorders.

When it comes to treatment for eating disorders in Quebec, it may sometimes seem that we have a two-tier health care system. We have the private and the public systems. Currently, in Quebec, a number of public resource professionals are trying to compensate for that shortage in order to meet the demand. However, the sad reality is that few professionals know enough about those disorders to be able to respond effectively.

There is another major issue that should be pointed out. Most of the care available is concentrated in large urban centres. People living in the regions have few resources, and often feel isolated and misunderstood. They also feel like that they are the only ones with these kinds of problems.

We know that the number of individuals with an eating disorder will increase—and they will be younger and younger—and that the physical and psychological consequences are serious. There is an increasingly urgent need for action.

All my years with ANEB have made me see that much of the stigma around the illness has persisted. People still often say that all someone has to do is eat, that their disorder is just a whim, that eating disorders affect only girls, that an individual is not anorexic because they are not thin enough, and I could go on.

This lack of understanding of the disease and the misconceptions about it are sometimes even found among health care professionals who are not trained or informed regarding this issue. Patients are sent home if they are not thin enough because, according to the health care personnel, they are not exhibiting clear physical signs associated with undernutrition. Believe it or not, we are still seeing this in 2014.

In addition to the many persisting prejudices, the illness is still taboo, even in 2014. Those people are ashamed to seek help. They are afraid of being judged. The disease is more taboo among men.

What about loved ones and friends? Family members of affected individuals are often resourceless and powerless in the face of the disease. They feel that they lack information about the illness and about the treatment, and that they have little support in their suffering. They do not feel equipped to help their loved one.

Last year, over 750 family members of individuals with an eating disorder called the ANEB phone help line to seek assistance, and over 300 individuals turned to support groups for accurate information.

Following this reflection, we have a few recommendations for the committee.

It would be important to improve accessibility to specialized support services in the community in order to ensure appropriate and quick assistance for individuals waiting for support, but also after treatment.

It would also be important to consolidate the funding of organizations working with this clientele, so that energy can be invested into developing assistance, instead of into looking for funding. That's often what community organizations have to focus on.

In addition, it would be important to increase the number of awareness and information campaigns targeting the illness. More interest in this issue would go a long way in helping reduce the discrimination and stigma people with an eating disorder experience. It would also be a good idea to find known public figures who have suffered from an eating disorder and who would agree to talk about their experience with the disease.

It would be essential to make training programs more accessible to various professionals, so that they could identify eating disorders more quickly and effectively. That training should target far more professionals, as many of them are likely to deal with such cases. I am not talking about only health care professionals, but also professionals working in schools and sports coaches. That number should be increased as much as possible.

It would also be important to provide professionals with more tools, so that they can respond more effectively and appropriately to clients. This would really help reduce waiting lists for third-line services and provide services in the community.

The use of prevention programs in school should be more prevalent. Those programs would be based on research evidence. In addition, peer helpers should be trained to identify young people in schools.

That concludes my presentation. I hope this information will help you in your study on eating disorders among girls and women.

Thank you for listening.

[The Chair, NDP, Hélène LeBlanc]

Thank you very much, Ms. Champagne.

We will now go to Jadine Cairns, from the Eating Disorders Association of Canada. She has 10 minutes.

[Jadine Cairns]

Thank you.

Good afternoon. I'm really honoured and excited to be able to present to you as you conduct this study on eating disorders in Canada. As mentioned, I am the 2014 president of Eating Disorders Association of Canada and a registered dietitian by profession. I have worked in the area of eating disorders for 25 years.

I have had the opportunity to review the transcripts of the meetings thus far. I'm very excited the Government of Canada wants to hear about the challenges that eating disorder individuals and their families undergo, something that I've known for the past 25 years. There is a lot of heartache and pain and not enough resources.

I currently work in a tertiary centre. I work in the B.C. Children's Hospital eating disorders day treatment program, and I have a private practice that specializes in eating disorders. In my 25-year tenure I have had the opportunity to participate in setting up in-patient programs, working in outpatient clinics, and setting up residential eating disorder programs. I've even had the opportunity to run an eating disorders camp that we have in B.C. Every year I get a couple of hours to lecture to medical and dental students. I talk on adolescent nutrition. Of course, in my view, the big deal around adolescent nutrition in North America is eating disorders and obesity. I have an interest in obesity also. In fact I took a job in the pediatric obesity program at Children's for a couple of years. I think there's a lot of overlap. I know that other people have presented on this same topic.

Now, about EDAC, the Eating Disorders Association of Canada, it is a very young association. It was incorporated in 2009 when a group of eating disorder professionals saw a need for a uniquely Canadian association. Our mandate is to see how we can best serve the needs of those whose lives are impacted by eating disorders. We are exclusively operated by volunteers. Like me, the volunteers are eating disorder health care professionals. Only last year were we able to hire, on a very part-time basis, some support staff for the association. We felt the need to actually pay a few hours for a webmaster and provide a small amount of administrative support for a different staff member. Until this time last year, these individuals were also volunteers.

The board of directors is quite interesting. They span the country. We have people from coast to coast and across disciplines. I'm a dietitian. We have pediatricians. We have psychologists. We have social workers. We have an elections committee, and we try to emulate the fact that the best practices for treating eating disorders are multidisciplinary. EDAC is unique in that we are trying to be truly multidisciplinary.

As an association, we have four specific objectives. We want to: one, educate each other regarding best practices; two, encourage the sharing of information amongst members on the issue of eating disorders care; three, promote a reflective and responsive approach in the provision of care and amongst providers; and four, stimulate and support research in the area of eating disorders.

Our first president was Dr. Leora Pinhas, whom you've heard from. In fact many of the founding fathers and mothers of EDAC-ATAC are the same visionaries and passionate advocates you've already heard from, including Dr. Woodside and Dr. McVey, just to mention two.

To meet our association mandates at this time, we produce three newsletters a year. We host a national conference every other year. Although not ideal, this is all we can do with the rather limited resources we have. This coming year our national conference is in Vancouver, with the theme of innovation and integration in eating disorders.

As the EDAC-ATAC president, I am also the chair of this conference. Our hope is to provide a forum for many of the eating disorder health care providers from across the country to gather and share information and to invigorate each other as we do our work in our situations. We have arranged for keynote speakers who will go from prevention to treatment. In fact one of our plenaries will be totally devoted to looking at national guidelines for the treatment of eating disorders—all things that I know from past presentations have been a passion for many folks.

I am fortunate enough to be in a province, the province of British Columbia, where we do have a goal of the continuum of care for eating disorders.

It's not perfect. We have lots of holes, and the holes in particular have been addressed by previous witnesses. There's no residential program, and there's a need for it, specifically for young people who are suffering from an eating disorder. For example, right now I have a 13-year-old on our in-patient unit who did not manage to stay in our day treatment unit. She's had five admissions in the past two years. She's only 13. She really does not get the care that she could get provided in the in-patient unit but that's all we have. Ideally a residential program with longer-care commitments would be a better fit.

We also have secondary services in B.C. for children and adolescents. It's really based on family-based therapy, the Maudsley model, and has been well-supported by evidence. It's actually reduced the need for tertiary care of more intensive treatment. We've seen that in real life because when we have people working in those communities doing family-based therapy, we don't get the influx of referrals to the intensive treatment centre. But when we hear that there are budget cuts, there's a lack of program, or the wait-list is a year—for a young person that is ridiculous—we suddenly get a huge influx into the referral system into the intensive programs.

Alisa Harrison, who produced a document for the British Columbia government that was a literature review and environmental scan in 2011, actually cites that in the worldwide literature that she was reviewing. This is a really wonderful, very comprehensive document.

The goal that we work towards in B.C. is trying to look at continuing care for eating disorders services. I just want to highlight those two points as I talk about eating disorders and the role that EDAC is perhaps wanting to look at.

For more information on the state of eating disorders in British Columbia—I could spend another 20 minutes on that—I would refer you to Dr. Connie Coniglio, who is one of our directors at the Children's eating disorder program and she's also from the British Columbia mental health and addictions overall sort of management. So, Alisa Harrison's document is available.

A second document that is quite comprehensive is the clinical practice guidelines for the B.C. eating disorders continuum of service. That's a follow-up document from the continuum of service and it's currently in draft form, and its author is Dr. Josie Geller. I believe that Dr. Geller is on your list of witnesses that you may bring forth. Again, we could spend lots of time talking about the clinical practice guidelines that she's put together. I won't take time to do that, but we can provide it or ask for it for you if you need it.

I also want to take a few minutes to talk about one of the most satisfying things I get to do in my private practice that specializes in eating disorders. Because I've been in the British Columbia eating disorder system for so long, I often get referrals. I get calls from desperate moms and dads who are at a loss as to where to go. Because I know many of the systems, I know where their care might be provided free of charge so they don't have to come to me and pay the private practice price. I love getting them into the right care at the right time. Sometimes I support them while they are on the wait-list to get into the care that's in their local programming.

I was at my doctor's office today. I know there's been a lot of talk about GPs getting the right resources and getting them trained correctly, and I think that's really important. My GP said, “You know, when I see an eating disorder patient I book extra time, but the extra time is 10 minutes and the usual time is seven minutes.” It's almost laughable that they have 10 minutes to support an eating disorder patient and family. He told me, “You know, I see them but then I have to spend a half an hour or hours extra on my own time trying to connect people to the resources.” So, the bottom line is that I want to bring out that navigation piece for the country to coordinate. That would be truly wonderful.

The last part I want to talk about, having reviewed all the transcripts so far, is the health care message. One knows that nutrition and physical activity are very important components of the health care message. For our particular population, especially for those with anorexia nervosa, the health messages are taken in and taken to the extreme.

I'll give you an example. I have a 12-year-old young lady who is in my program right now. She came in at 60% of where her goal weight should be. Her heart rate was in the 30s, she was blue, her heart valve was not working properly and yet when we wanted to provide safe nutrition, provide some nutritional supplements, she was fearful because it had fat in it and it was fat juice. She feared it with her life. In the secrecy of her room she was exercising. The messages that she had absorbed were fat is bad and exercise is always good. Those are the health messages she has taken to the extreme. Of course, at this point in her life and her time fat is good for her and she does not need to exercise and those are actually bad for her.

As we look at the messages that are put out there, I want us to actually be cognizant of perhaps a push for the fear of obesity, obesity prevention, and it really clutters up what the general public is seeing or hearing and even our health professionals and GPs.

[The Chair, NDP, Hélène LeBlanc]

Thank you very much, Mrs. Cairns, for your testimony.

Maybe you'll have a chance to expand during the question period.

Ms. Brayton for 10 minutes.

[Bonnie L. Brayton]

Thank you again for allowing me to get back and get my document correctly printed.

I will say that my president took quite a bit of time to review the previous testimonies and certainly that impacted the way that we chose to prepare for today.

As we already heard from NEDIC, the actual face of an eating disorder is heterogeneous: mostly female, but also male; individuals who identify with their assigned sex and gender, and those who don't; racialized individuals; newcomers to Canada and established Canadians; individuals with physical disabilities; individuals with concurrent medical or psychological disorders, such as, diabetes, substance abuse, depression, PTSD, and so on. Individuals from all socio-economic walks of life have eating disorders.

From a feminist lens, we have long been concerned with the messages women and girls receive about body image, sexuality, and in particular, the sexualization of young girls in the media. Conversely, from a feminist-disability perspective, in the quest to present women as strong and capable, the larger movement does not always reflect the face of women and girls with disabilities. We look everywhere but do not see our faces, and often there is no place for us, no model to follow.

In the intervening time we also see the deadly and devastating impacts of Internet pornography and cyberbullying. Women and girls are being exposed to online sexual harassment and stalking. Sex is a commodity, and your stock rises and falls with your appearance.

No exploration of media and eating disorders would be complete without flagging the issues posed by online groups that are involved in trading ideas about how to binge and purge, further reinforcing deadly practices. Additional impacts also come in the media for our virtual invisibility and the way society views mental illness and invisible disabilities, refining our view to the context of disability.

People with mental disabilities tend to come at the bottom of the hierarchy of impairments, below those with physical and learning disabilities, because they are constructed as deviant and dangerous...as possessing a spoiled identity and lacking rationality....

I'm quoting from Beresford.

The media plays a fundamental role in this portrayal focusing on the strange or aggressive behaviour of people categorised as 'mentally ill'. This has real consequences for individuals living with such disabilities because politicians are affected by what is reported and shape policies around mental health accordingly.

Disabled women experience violence and have a unique risk as a result of this.

Many of us recount our experiences, as young children, of having to display our bodies to groups of male doctors in the guise of “medical treatment” without prior knowledge or consent. We may have been asked to strip, to walk back and forth in front of complete strangers so that they could get a better view of what the physical “problem” is, or to manually manipulate our limbs to determine flexibility and dexterity. Today, pictures or videos are taken of us and used as educational tools for future doctors, with little thought given to our needs to have control over what happens to our bodies or who sees us. While the medical profession attempts to maintain control over our bodies, some women with disabilities may attempt to regain control through dieting, bingeing or other methods of body mutilation. It is ableism at play when a doctor asks a woman with a disability to lose weight before she becomes too heavy for her caregivers to lift. And that ableism persists when a woman with a physical disability loses weight, and instead of asking how she did it, congratulates her on her “success.”

Though identified as a serious environmental risk factor for eating disorders, every psychiatrist who testified spoke about the active discrimination faced by women and girls with eating disorders. This discrimination is in clear contradiction to the spirit of the Convention on the Rights of Persons with Disabilities, insofar as the right to be assisted in the recovery from injuries posed by their abuse.

DAWN Canada supports the recommendations made by the medical professionals presenting here and those of NEDIC. We offer a discussion of our own.

Recommendation number one. Canada’s approach to eating disorders must be strategic and involve all levels of education, practice, and research. We need to ensure that the intersectional, gender, and disability lenses are also trained on the process of research, practice, education, public awareness, and disability inclusion. Public health measures aimed at prevention and early detection must include physician screening; public health nurse screening; school nurse, mental health, and addiction screening; as well as the intervention and recognition that violence against women and girls is a cause, effect, and risk factor for eating disorders. Women and girls need choice and a continuum of referral points.

Caution is also urged in the area of interventions such as neuro-stimulation and magnetic stimulation. There is promise, but have all the risks been taken into account?

Recommendation number two. There are many references to best practices and evidence-based care but there must be room for innovation, new ideas, and also creative care for women and girls with disabilities for whom current evidence-based interventions are not working.

Recommendation number three. We must ensure that women and girls with disabilities are included in discussions of eating disorders and body image. Our voices, perspectives, and indeed our images are necessary in order to move forward effectively.

Recommendation number four. Treatment programs must include women and girls with disabilities and take into account the intersection of gender, violence, and disability.

The services need to be competent in addressing eating disorders, trauma, addictions, and the medical effects of eating disorders and disabilities of women and girls who present for treatment rather than using intersecting disorders as a rationale for exclusion.

Facilities must be developed using the principles of universal access and information must be made available in alternate formats to ensure that all women have the information they need. Treatment must be holistic, multidisciplinary, and offer a range of choices along a continuum of peer support, community treatment, day programs, brief intervention, and long-term treatment. The interventions must take the developmental level of the woman or girl with a disability into account and be appropriately tailored for their needs.

There's a lot of discussion in the presentation about the concurrent addiction but not much discussion on the appropriateness of addiction treatment modalities in helping manage compulsive aspects of eating disorders. More research is needed to help see if addictions modalities could assist eating disorder treatment.

Remove barriers to mothers with disabilities and eating disorders who need to go to treatment. I give Alberta as an example where, under the Child, Youth and Family Enhancement Act, if a child is in care for 200 cumulative days, they move to make the child a permanent guardianship order. If a mother has no other place to care for her children than in temporary foster care, this is a discriminatory measure. We are not sure if this measure is similar in other provinces. In order to provide a structure and framework for therapy, access for determinant of health must be in place.

Justice also has a role to play with mental health diversion and the Elizabeth Fry Society, when people are arrested for stealing to finance binge cycles, as well as ensuring that adequate treatment opportunities exist for women and girls with disabilities.

Women and girls with disabilities must have positive media coverage. Women and girls with disabilities must have access to programming in which they can see their own lives and realities reflected in the Canadian discourse. The CRTC needs to be more active in promoting these measures.

Ever mindful of the slippery slope of assisted suicide—and I bring this forward because it's such an important issue in the Canadian discourse today and such an important issue to people with disabilities—we look at the risk for women with disabilities being valued less for scarce treatment resources because the younger person was perhaps seen as more viable. So she, as a 53-year-old woman, was left for nature to take its course. That's referring to Dr. Woodside's testimony of November 28, 2013.

In countries where euthanasia exists.... The case of Ann G, a 44-year-old woman with anorexia nervosa who died by euthanasia is one in a series of cases that have come out of Belgium, including recent cases, again, as a sidebar, that include the euthanizing of baby girls with spina bifida.

The human family in Canada simply must offer better to all of its citizens, including women and girls with disabilities.

I'm looking forward to preparing a written brief. We had less than a week's notice, so we were not able to prepare it for today, but I wanted to indicate that we would be recommending that the committee also hear from a young woman named Kaley Roosen, who's currently pursuing her Ph.D. at York University. Ms. Roosen's thesis and research is focused on eating disorders and women with physical disabilities. In addition, we will bring some important findings from her research in our written brief.

Thank you.

[The Chair, NDP, Hélène LeBlanc]

Thank you very much. This was quite a marathon. My hat goes off to the interpreters, who managed to keep up with the flow of your ideas.

We will begin the question period.

Ms. Truppe, the floor is yours for seven minutes.

[Susan Truppe, Conservative, London North Centre, ON]

Thank you, Madam Chair.

I'd like to thank everyone for being here and sharing your experiences with us.

I have a few questions for almost everybody, but I'd like to start with Madam Champagne.

I just want to commend you. I understand it was maybe 17,000 people who benefited from your services last year. I don't recall hearing from some of the other witnesses, unless I've missed something.... You have support groups, a helpline seven days a week, a confidential online chat forum. I think you also said a referral line.

Who are the people calling? Is it the individuals themselves or the families, supporters, or is it a mixture of people?

[Josée Champagne]

A variety of individuals call us. We are contacted by individuals suffering from eating disorders, their family members and health care professionals. This is a vital resource, as it enables us not only to provide information, but also to provide support, especially when access to professionals is no longer available. When these individuals find themselves at home at 7 p.m. or 9 p.m. with their suffering, their solitude, they don't know where to turn. This is a point of reference for them, a source of support, a place where someone can listen to them.

[Susan Truppe, Conservative, London North Centre, ON]

Is the information they're receiving back from you suggestions on places they can go to get help, or is their name left somewhere and then someone calls them back? How are they getting this information? You've obviously done a good job on the awareness program if you are helping that many people. How are you making all these people aware that they know to call you for help if they are sitting at home at seven o'clock at night?

[Josée Champagne]

It's very interesting. There are very few resources available. We are basically the door that leads to the network. For health professionals, school staff and specialized resources that cannot provide care quickly, it's a matter of getting the word out on the organization as much as possible.

When clients who are trying to get help are told that there is no place for them, that there is a waiting list, they are automatically referred to us. This service is provided across Quebec. Earlier, I was talking about people who live in the regions and have no access to certain services. For them, we are a vital support resource.

Last year, 6,000 people called the help and referral phone line, and over 2,000 of them called after 5 p.m.—between 5 p.m. and 9 p.m. Usually, 50% of people call us because they need support, because they feel a food crisis coming on or because they are in distress. People are increasingly using this service to have someone who would listen to them.

[Susan Truppe, Conservative, London North Centre, ON]

What would be a best practice that you've experienced that we could share with other people since you seem to be doing so well at this? Have you shared everything you're doing with other teams in other provinces?

[Josée Champagne]

Yes, we are trying to share this experience more and more. I think that ANEB has a really good service continuum model. We presented our response model to the Eating Disorders Association of Canada two years ago. In addition to the help and referral phone line, we have a good support group model on which more and more research is being done. Very little is being said about the community aspect because it mainly focuses on treatment. That accessible community support really improves the lives of many individuals. It plays an important role during the pre-treatment period and the post-treatment period—once people return home after receiving care. To consolidate the lessons learned, individuals can come to us and obtain support in various ways.

I would also like to add that some of our services are specific to the stage of an individual's journey towards recovery. If someone is not ready to make the call and initiate a treatment process, they can use online services. When providing our services, we really try to determine at what stage of their process the individual is.

[Susan Truppe, Conservative, London North Centre, ON]

Thank you.

Madam Cairns, I think you mentioned that you have national conferences every other year and four newsletters a year. Do you have a favourite best practice that you've learned from your conferences?

[Jadine Cairns]

The best practices seem to be changing all the time. I was at the conference where Madame Champagne presented, and that's part of the excitement, to put together the Canadian.... A lot of really talented people are doing really good work across Canada. One of the things I like to do is look at the continuum of care and fill in the pieces that seem to be missing. I work in tertiary care, so I love it when I hear about prevention in the community, doing something before they need to get to tertiary care. As a therapist for children and teens working on the symptoms of eating disorders, I love the family-based therapy for outpatients in the community. It really does stop the progression.