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Butterfly
Foundation for Eating Disorders
27“ February, 2017
The Hon Kevin Andrews MP
Chair
Joint Standing Committee on the National Disability Insurance Scheme
PO Box 6100 Parliament House
Canberra ACT 2600
Via Email: ndis.sen@aph.gov.au
Dear Mr Andrews
NATIONAL DISABILITY INSURANCE SCHEME & EATING DISORDERS
Butterfly Foundation is the national peak organization for those with a lived experience of eating disorders.
Eating disorders, including Anorexia Nervosa, Bulimia Nervosa, Binge Eating Disorder and atypical
presentations, are complex neuropsychiatric disorders with a high mortality rate.
Those with complex, chronic presentations need integrated services and supports. To date, a number have been included in the Partners in Recovery and Personal Helpers and Mentors Services programs. Butterfly seeks an opportunity to appear before the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) inquiry considering ‘the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition to present the case for those with long term eating disorders.
In addition, we detail below our response to the Terms of Reference, particularly to parts a - g andi.
EATING DISORDERS IN AUSTRALIA - 2017
Butterfly is committed to working collaboratively with the National Eating Disorders Collaboration, the Australian and New Zealand Academy of Eating Disorders, and other stakeholders to develop the knowledge base of eating disorders and how they are most comprehensively treated with a focus on recovery oriented approaches. The National Eating Disorders Collaboration coordinated by Butterfly has over 2,000 members.
As noted above, eating disorders are complex and serious neuropsychiatric illnesses which are associated with significant physical complications and increased mortality. This group of psychiatric illnesses includes
Anorexia Nervosa, Bulimia Nervosa, Binge Eating Disorder and ‘Other Specified Feeding and Eating
Disorders.’
Eating disorders are most frequently comorbid with other psychological and physical disorders such as depression, anxiety disorders, substance abuse and personality disorders.
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The reality of eating disorders in 2017 includes:
¢ 1million Australians currently experience eating disorders, however less than 25% are seeking and / or receiving treatment
e Lifetime prevalence rates are 10% across the Australian population, with an increase to 15% for females
e There are increasing rates of males experiencing eating disorders with current estimates of 25% of those with Anorexia Nervosa and Bulimia Nervosa and 50% of those with Binge Eating Disorder
e Eating disorders represent the third most common chronic illness for adolescent females
e Mortality rates are the highest for any psychiatric illness and over 12 times that seen in people without eating disorders, including elevated rates of suicide
e Total socio economic costs are approximately $70B, with over $16 billion representing productivity costs. The highest component of cost is that calculated as the Burden of Disease at $52 billion, impacted by current low recovery rates (<50%), duration of illness and high mortality rate
There are known psychological, biological and environmental risk factors with recent evidence showing that genetic vulnerability is a key risk factor.
In 2012 and 2014 Butterfly commissioned Deloitte Access Economics to better understand the impact of eating disorders in Australia. These reports; ‘Paying the Price’ and ‘Investing in Need’, confirm that the current situation for those living with eating disorders in our country is desperate. Support and advocacy work continues to remain a priority for Butterfly, as does our prevention and early intervention education work in the community. ‘Investing in Need’ details the benefit to cost ratio of investing in accessible evidence base treatment services, reducing the duration and cost of an eating disorder. This ratio is 5:1 — for every dollar invested there would be a $5 benefit.
Recent engagement with consumers and carers to develop the First National Eating Disorders Agenda has highlighted challenges experienced by those with eating disorders and their families, including:
e Missed or inaccurate diagnosis
e Severely unwell people unable to access treatment
e No treatment pathways for people with mild to moderate binge eating disorder and bulimia nervosa
e Short treatment duration with no support for recovery and relapse prevention
e Lack of access to psychological therapy in medical care and vice versa
e High costs of treatment and lack of public health services
e Very high strain on family resources, mental health and relationships
e Lack of access to treatment for people in rural areas.
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THE OPPORTUNITY OF THE NDIS FOR AUSTRALIANS WITH SEVERE AND ENDURING EATING
DISORDERS
Concern has been expressed, by a number of key organisations in the mental health sector, consumers and carers that the NDIS may not delivered on promised benefits for Australians living with complex mental illnesses. There is a fundamental tension between the NDIS’ aim to support those with permanent and incapacitating conditions, and the belief that recovery from mental illness is possible.
Eating disorders directly straddle mental and physical illnesses. As neuropsychiatric disorders they require intensive psychotherapy. However, as they manifest in highly disordered eating and exercise behaviours they also cause significant physical impairment requiring parallel medical treatment. Physical complications can include cardiac distress, potassium level shifts, damage to the gastrointestinal system, osteoporosis, and organ failure.
While it is possible to recover from an eating disorder, the lack of accessible treatment for the majority of Australians means that current recovery rates are, on average, less than 50%. The impact includes a significant number for whom the eating disorder becomes severe and enduring.
The Committee has been asked to consider the transition to the NDIS of all current long and short term mental health Commonwealth Government funded services, including the Personal Helpers and Mentors services (PHaMs) and Partners in Recovery (PIR) programs, and in particular; whether these services will continue to be provided for people deemed ineligible for the NDIS. Butterfly is aware of consumers who are currently within these programs. As the criteria for the NDIS requires a permanency to the disability that is not a current requirement of PiR or PHAMS, it is imperative that the NDIS not be seen as a replacement for these current programs. If this was to happen, it could render people with significant eating disorders without access to important services that enhance their quality of life. If anything, these services need to be expanded to reach even more Australians living with eating disorders who require significant support to support and maintain recovery.
The Committee has been asked to consider to the transition to the NDIS of all current long and short term mental health state and territory government funded services, and in particular; whether these services will continue to be provided for people deemed ineligible for the NDIS. Development of safe, effective responses to eating disorders will require collaborative effort between states and territories, between public and private health, between medical and mental health services and between diverse professional groups. Butterfly understands from our engagement with consumers, carers and state based eating disorder services that the transition to the NDIS has created great uncertainty for many who access services which may be transitioned to the NDIS. It is critical that the transition to the NDIS does not inadvertently create additional gaps in the continuum of care. While in other areas of health care there has been concern about potential duplication of services across national, state and territory funded initiatives, the reality for those living with eating disorders is that there are too few services to meet demand.
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The Committee has been asked to consider the role of the Primary Health Networks in the planning process for people with a psychosocial disability. The National Eating Disorders Collaboration has recently been resourced by the Australian Government to build the capacity of PHNs to respond to the needs of those with eating disorders. This work is currently underway. Our initial scan has identified that of 31 PHNs nationally, only six have identified eating disorders in their strategic plans. This is despite eating disorders impacting over 1 million Australians and leading to 2000 deaths each year. For PHNs to be able to adequately support people with eating disorders to access the NDIS, it is imperative that they build their
knowledge and skills in working with people in eating disorders. Butterfly would welcome the opportunity to work with the PHNs to build their capacity to do this.
The Committee has been asked to consider whether spending on services for people with a psychosocial disability is in line with projections. Investment in eating disorders is fundamentally inadequate. Butterfly is leading the eating disorders sector in developing the first National Agenda for Eating Disorders which sits alongside the Fifth National Mental Health Plan. The Agenda’s purpose is to develop a minimum, baseline effective level of evidence based care that is accessible for all Australians who are affected by eating disorders. Establishing a baseline of evidence based care for people with eating disorders in Australia is critical and urgent. In 2017 it is a struggle for all and for too many an impossibility to gain access to effective evidence based treatment delivered in sufficient dosage and for sufficient duration to treat these illnesses and support sustained recovery. The high rate of mortality is resulting in unnecessary deaths.
Essential systemic changes identified in the National Eating Disorders Agenda include:
e Eating disorders being core business for all mental health services and in all related policy and initiatives. This needs to include access to the NDIS for those suffering complex and chronic eating disorders;
e Implementation of national standards for eating disorders;
e Workforce development to ensure a workforce that is knowledgeable and skilled to identify eating disorders and deliver eating disorders treatment and support;
e Targeted service development to address gaps in the continuum of care; and,
e Accountability measures to ensure that service planning and development at all levels continues to prioritize the development of evidence based responses to eating disorders.
CONCLUSION
While recovery from an eating disorder is not only possible, but sustainable, this will only be achieved with coordinated national and state activity to develop integrated continuums of care supported by professional expertise in health and allied health. Due to the significant under investment in eating disorders services to date, there is an unacceptably high number of Australians who are living with an eating disorder than has become severe and enduring. These Australians require access to the NDIS to ensure ongoing services and support that will enhance their quality of life and reduce their mortality risk.
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It is important that resources are allocated to ensuring that planning processes adequately take into account the unique circumstances of those living with these complex neuropsychiatric illnesses. As the peak body for those with an eating disorder and their loved ones, Butterfly would welcome the opportunity to work with the NDIS to ensure that the voices of those with an eating disorder are heard.
Thank you again for the opportunity to provide a response to the Joint Standing Committee on the National
Disability Insurance Scheme. | would be pleased to make myself available to attend before the Committee
to discuss these concerns in more detail if that would be of assistance.
Yours sincerely
Christine Morgan
Chief Executive Officer
THE BUTTERFLY FOUNDATION
103 Alexander Street Crows Nest NSW 2065
Phone: +61 2 9412 4499 Fax: +61 2 8090 8196 Email: info@thebutterflyfoundation.org.au www.thebutterflyfoundation.org.au
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ABN: 42 102 193 582
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APPENDIX A: ABOUT THE BUTTERFLY FOUNDATION
The Butterfly Foundation (Butterfly) is Australia’s largest charity supporting all people experiencing negative body image and eating disorders as well as their carers.
Founded in 2002 by Claire Middleton OAM, Butterfly’s vision is ‘to live in a world that celebrates health, well-being and diversity’. Our Mission is to ‘bring about change to the culture, policy and practice in the prevention, treatment and support of those affected by eating disorders and negative body image’.
We do this through several core areas; Support Services, Prevention/Education Services, Advocacy and Awareness, Treatment Service Development, Research Funding and Fundraising.
Butterfly Board of Directors
David Murray AO — Chairperson
Anne Doherty
Anthony Gill
Catherine Happ
Christine Morgan (CEO)
Clinical Associate Professor Richard Newton
Professor Susan Paxton
Paul Salteri AM
Michael Same
Founder
Claire Middleton OAM
THE BUTTERFLY SERVICE OFFERING
Butterfly’s service offering includes:
- Education Services: We conduct workshops, presentations and resources for young people, professionals and parents addressing the factors influencing negative body image, disordered eating and the development of eating disorders. This includes school workshops and presentations for Year 3 — 12, training for professionals and teachers working with young people, workshops for parents and whole school and community programs.
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Butterfly Foundation National Helpline ED HOPE: The Butterfly Foundation’s National Helpline ED HOPE is a free and confidential service which provides information, counselling and treatment referral support about eating disorders and related issues. Individuals, their families and carers can connect with the service via phone, email or webchat in a safe and supportive environment. All counsellors are professionally trained and experienced in supporting those with an eating disorder. We also provide support to health professionals on how to manage the care of someone with an eating disorder.
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Intensive Outpatient Service (IOP): The Butterfly IOP represents a different approach to eating disorder treatment in Australia and is a unique and specialised program which encourages a person to overcome obstacles that are interfering with their quality of life to improve motivation and action towards recovery. Using combined elements of a strong clinical team, high staff to client ratio and individual treatment plans, the IOP works to enhance the ability for the individual to deal with their eating disorder.
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Recovery Support Services: Butterfly facilitates support groups and psychoeducational programs for people with lived experience and their families to help people develop the skills to manage their eating disorder or to support a loved one. These groups operate online as well as in Sydney, Townsville and Adelaide. We also provide financial assistance to support those on their journey to recovery to access treatment they would otherwise be unable to afford.
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Sydney Children’s Hospital Network Child and Adolescent Day Program: Sydney Children’s Hospital Network and the Butterfly Foundation have teamed up to create a new service for adolescents with an eating disorder. The program is a state wide service for NSW offering comprehensive multidisciplinary care. It is specifically designed for adolescents who have not progressed with previous treatment programs. The clinical interventions are tailored to address the specific barriers adolescents with an eating disorder experience by increasing their capacity to cope with distress and the challenge of eating. Family participation is an essential component of the program.
Butterfly also manages the National Eating Disorders Collaboration (http://www.nedc.com.au) on behalf of the Australian Government Department of Health. The NEDC was established in 2009 and brings together experts and people with lived experience to develop a nationally consistent, evidence-based approach to the prevention and management of eating disorders in Australia.