If we are aware of it, or not, all of us in the Jewish Community know someone who is struggling with an Eating Disorder. It strikes all ages, increasingly, children and both genders; is harmful to health: physical, mental, emotional, spiritual - often crippling - often fatal. Those for whom family, friends and physicians have a concern have, practically, and in proportion to the need, almost no where to turn. Wait lists, for a few hospital beds, exist in all of the GTA for those requiring medical stabilization before treatment can begin. Eating Disorders of York Region's (EDOYR's) proposal is to intervene before there is a need for a hospital bed, that is, cut short the life of the Eating Disorder before it cuts short the life of the sufferer.
Children, pre-teens, teens, young adults, adults, females and increasingly, males, struggle in the face of the full spectrum of Eating Disorders to grow and thrive physically, socially, emotionally, spiritually and mentally. Eating Disorders are largely hidden in our families and communities. Early intervention prevents the bones of a young teen from becoming those of an 80 year old, prevents the loss of fertility, brain shrinkage, stunted growth, heart damage and other irreversible damage caused by undetected and untreated Eating Disorders. Early intervention cuts short the life of an Eating Disorder; to help individuals who are trapped by it to re-engage in life, their family life and the life of the community, with hope for their future.
The mortality rate associated with anorexia nervosa is 12 times higher than the death rate of ALL causes of death for females 15 – 24 years old.- South Carolina Department of Mental Health
"The Hidden Hunger; Eating Disorders in the Orthodox Community" (excerpts; click link for full article)
"…the onset is often correlated with a stressful life event such as beginning to date, leaving
home for Israel or starting college."
"Although exact statistics on the number of Orthodox women with eating disorders do not exist, anecdotal evidence indicates that the problem is significant. "We in the Orthodox community have the tendency to feel that we don’t have the same problems that exist on the outside. But sometimes we do,” says Rabbi Goldwasser. Victims of eating disorders may suffer from osteoporosis, amenorrhea (cessation of menstruation) which can lead to infertility, and other hormonal disorders. In some cases, they may even die. Moreover, eating disorders cause enormous emotional upheaval for the patient and family. In fact, other family members can become at risk for eating disorders, depression and anxiety disorders."
"Referral by primary providers is the most likely reason families/patients seek expert care. A detailed assessment and referral to an expert can, therefore, ensure the best treatment outcome for the patient." - Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders, Academy for Eating Disorders, AED Report 2011
Individuals presenting to a family physician with signs or symptoms of an Eating Disorder may not receive the help needed to over come an Eating Disorder due to a number of factors. These factors are also present in the much more frequent scenario when an individual is not ready to reveal their eating disordered behaviours or does not know how to discuss the underlying emotional triggers. Whether due to avoidance of emotional issues, the lack of self understanding, the stigma associated with Eating Disorders, limited-time factor when meeting with family physician, or other cause, the single most critical factor to a patient not receiving early intervention is the lack of referral resources available to family physicians.
If a physician suspects a patient may be coping with life through an unhealthy and potentially life-threatening Eating Disorder they have few choices. In the case of a seriously ill or, medically unstable patient, a physician may make a referral to a hospital in-patient or out-patient program wait list for an admission assessment. There are waiting lists for a limited number of places in hospital programs - depending upon the patient's specific age, where they live, the degree of their illness - where they may seek treatment. A physician may make a referral to a psychiatrist most of whom have long waiting list and/or are not accepting new patients or, to a psychologist, also involving waiting lists and this may be financially prohibitive, due to the associated costs. Private treatment, if available, is $1,000.00 per day for in-patient treatment, often with a minimum 30 day stay requirement and, almost without exception, available only for those who are medically stable . There are few choices for a family concerned about a family member who is in denial; fewer for the family physician who is unaware of the individual's Eating Disorder if the patient is unready, or, unwilling to present this or, who is unaware of the danger they are in. Where will a physician make a referral to for the hundreds and thousands who live in our community who are unable to access hospital programs or can not afford private treatment to interrupt the Eating Disorder at early on-set and seek early intervention?
Through an Intervention Assessment Centre a family physician can refer a patient to professional support where the time, expertise and confidential setting required to explore the role played by their Eating Disorder coping strategy is possible. The earlier an Eating Disorder is disrupted - the less entrenched it has become, the less amount of emotional, mental, physical, social harm has been done - the sooner the path to recovery can commence and be effective. The individual can remain in the community retaining their position(s) of responsibility whether that be caring for their family, retaining their employment, continuing, rather than dropping out of, school, pursuing their life goals rather than withdrawing from the community, isolating themselves from their family, loosing their focus in life and healthy activities, relationships and responsibilities.
An assessment is more than the first step it is can be AN INTERVENTION.
The next step is for the patient to create a Plan of Care together with family physician. With confirmation of eating disorder issues not requiring hospitalization the individual and/or family can review with their family doctor the list of community based resources which will be provided to them with their assessment report. The individual can remain in the community retaining their position(s) of responsibility whether that be caring for their family, retaining their employment, continuing, rather than dropping out of, school, pursuing their life goals rather than withdrawing from the community, isolating themselves from their family, loosing their focus in life and healthy activities, relationships and responsibilities.
EDOYR's proposal to create an early Intervention Assessment Centre will provide family physicians with a referral to interrupt an Eating Disorder in its early stages and to develop Community Based Plan of Care. Physicians will receive the following: Eating Disorders brochures and Resource Guides as hand-outs for patients; to facilitate dialogue they'll receive posters for examining rooms with signs and symptoms for patients to be aware of and consider regarding Eating Disorders; physician brochures "Critical Points for Early Recognitiona and Medical Risk Management in the Care of Individuals with Eating Disorders" and information to the resource tool, "Putting Eating Disorders on the Radar of Primary Care Providers" and referral forms.
Physicians making referrals to the Intervention Assessment Centre will continue to follow their patients and will receive an Assessment Report together with a list of resources from which to create and monitor a Plan of Care. This step takes action rather than allowing the disorder to further deteriorate health under the guise of a phase, a stage, something one will grow out of or, that will go away on its own - Eating Disorders are serious, debilitating, and life-threatening.
If funded, EDOYR will provide one in-depth motivational interview to help the individual assess their readiness to engage in support. Up to six one-to-one counseling sessions in conjunction with group support programs to help individuals with the transition to attend group support programs. Several new group support programs will be made available which individuals may re-enroll in, as often as is needed, to support recovery.
The Intervention Assessment Centre may expand, as funding develops, to provide "modules" which augment programs including a "drop in" program at pre-scheduled times for individuals and/or family members to meet with counselors one-to-one to discuss programs and resources, a public resource centre, access to a multi-disciplinary team of professionals including dietitians, psychotherapists, and other therapies and, potentially, offering a day treatment program for those requiring support with meal preparation and eating, and peer support programs for maintenance of long-term recovery.
Reports will be received from referring family physicians and we will report on client self-evaluation, client follow-up surveys and client testimonials. We will measure pre and post surveys to report on 40 Developmental Assets related to external and internal assets and identified focus areas including "mental health, coping and life skills, and strengthened attributes associated with positive mental health such as sense of mastery, self-esteem, reduced depression".
The impact of an early intervention on the quality of life is infinite and measureless. The cost effectiveness may be equated as little as pennies per prevention and $1,000 per life saved. We look forward to demonstrating the cost benefit analysis.
Eating Disorder Statistics:http://www.nedic.ca/knowthefacts/statistics.shtml
Funding by Six Points will create an entirely new approach to the early intervention of Eating Disorders. Your support and involvement will put the crucial need for Eating Disorders awareness, education, prevention, intervention, treatment and funding on the radar at the National level. EDOYR is a founding member of a National organization being created to address the life and death realities faced by thousands of families across the GTA, Ontario and Canada. Families do not know, until they are faced with this life and death struggle, how few resources are available to them in the frightening reality of Eating Disorders.
Eating Disorders are hidden; for years, family members may not know of the struggle of a loved one due to shame, blame, guilt, trauma, while the Eating Disorder is developing into a deadly, entrenched, disorder. This disorder exists in our homes and our homes are our first line of defence. It is critical families know this is not a stage, a phase, one doesn't grow out of it. Long before an individual's medical condition is so severely compromised that the only recourse is medical stabilization before treatment can even begin - with long wait lists for few hospital beds - families need to know their loved ones may be struggling and loosing precious years of physical growth, social engagement which it may not be possible to reclaim.
Six Points involvement in key areas will enable us to meet critical community needs including healthcare marketing, fund raising, PR and media networking, strategic planning, social media, teaching and education to lessen the stigma associated with Eating Disorders and encourage early detection and early intervention.
The project is ready to begin and would commence immediately upon approval. The enhanced awareness and education achieved through Six Points funding will help create community co-ownership for the prevention and early intervention of Eating Disorders. Through the support of Six Points the message for early intervention assessments will become widely and well known, through the media and community. Through community contributions, financially, and awareness /fund raising efforts, the Centre will be able to sustain its cost effective operations.
The Intervention Assessment Centre will be able to rent office space to health care providers such as psychotherapists, nutritionists, therapists and other community groups to generate some additional revenue to support the Centre's programs. The Centre will be able to operate with these sustaining funds for the indefinite future. .
Please see funder's notes.
The Board's Advisory Council expertise includes psychologist, Dr. Tiffany Rush-Wilson, and Rotem Regev. Dr. Rush-Wilson teaches in the field of Eating Disorders and in her private practice provides support to individuals with Eating Disorders and support to their family. Rotem Rogev has an MA in Clinical Neuropsychology from Ben Gurion University. The Board of Director's expertise includes Dr. Judith Bercuson who has experience with Eating Disorder patients in her Medical Clinic. Several psychotherapists with an MA in counselling, specializing in Eating Disorders, and currently facilitating programs with EDOYR will provide assessments, individual counseling and facilitate support groups.
Executive Director, Janice Morgante, has four years experience in the field of Eating Disorders and will provide project management. She provided project leadership for an outreach project, "Emotion in Motion" (2009) funded by York Region and "Peersuasion" funded by Healthy Communities Funding in partnership with Girls Inc.(2010 - 2011) and a three year Ontario Trillium Foundation Grant (2008 - 2011).
EDOYR's founding Board members are Jewish families with "lived experience" of Eating Disorders. The agency was founded with the Memorial Fund of a young, 25 year old, Jewish woman who struggled with an Eating Disorder for eight years before her death. A second founding board member lost their daughter after a long struggle with an Eating Disorder. The founding families' intention is to contribute to the community the resources that were not available for their families when they were needed and to spare others what they have lived through.
Eating Disorders of York Region is in its 7th year of growth; we have expanded our services to include outreach to every publicly funded school in York Region and have been invited to meet with students from private Jewish schools. EDOYR has the expertise to train intake staff and social service support staff at family support agencies, such as Jewish Family Support Services, helping them meet the needs of their clients and introduce clients to free support programs provided by EDOYR. We are the only grass roots, community based, non-profit agency offering free support programs to individuals struggling with an Eating Disorder and support programs for their families in York Region(please see the testimonial, below).
"I am the mother of a child with an eating disorder. As a parent, you not only want to be the one to nurture your child, but you EXPECT to be the one who has the tools to guide your child. I knew nothing of Eating Disorders and nothing of the complicated and extremely frustrating road to finding help for my daughter. People with Eating Disorders do not talk about the problem, which creates a wall of silence. The wall isolates those with the disorder AND those who love them. I needed to find someone who could guide me – help me to find the resources to enable me to help my daughter. I am extremely grateful for the assistance that I have received from Eating Disorders of York Region (EDOYR). Through EDOYR, I have gained access to two Family support groups, and additional family counselling. When a loved one has an eating disorder, the path to healing has many twists and turns. EDOYR has provided indispensible knowledge and connections for my family at the time they were needed most – from researching clinics, admission requirements, and wait times, to alerting us to educational seminars. EDOYR has connected me to resources that are helping me to understand my daughter’s illness and that are helping me to recognize my own needs as a caregiver. I am forever grateful."
EDOYR provides a telephone help line to assist individuals and families. Unfortunately, at this time, we must turn down referrals from family physicians for assessments due to lack of funding. EDOYR has developed expertise through several years of growth and expansion, providing resources for a population of over 1.1 million in the York Region area, alone. Dialogue with the following has informed this proposal: OCOPED (Ontario Community Outreach Program for Eating Disorders) and Southlake Regional Health Centre's Eating Disorders Clinic (Click the link below to read the article with interviews with EDOYR and Southlake)
"How do you recognize anorexia in a child?" http://www.edoyr.com/Nov-2010.doc
EDOYR is well position to continue and expand outreach through the media as evidenced by several media articles and the attached Rogers video which is the second of a two part series created in 2010 to raise awareness of Eating Disorders.
The model for an early Intervention Assessment Centre is an entirely new concept and model; it is unique in its ability to adapt to and be replicated in any community, provincially, nationally or internationally. It can be provided on a large or small "grass-roots" scale to suit the community and can encompass more or, less, modules as needed which can be funded by various individuals, donors, funding opportunities, and / or collaborations. The multi-disciplinary approach provides the opportunity to generate revenue, off-setting costs, while creating cost effectiveness for all service providers and convenience for those accessing services who may, otherwise, experience barriers to service if, for instance, requiring travel to multiple locations - it can not be stressed enough how critical it is to ensure timeliness of intervention. The awareness raising and education component is a means of outreach for those in need, creates the hope of prevention, lessens the stigma, and encourages early detection. Awareness raising also provides for fund and "friend" raising in the community to create sustainability. EDOYR would be delighted to share expertise and train providers to create an Intervention Assessment Centre in other communities.