NDIA Accountability Project

Supporting services for people with epilepsy

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Committee Secretary

Senate Standing Committees on Community Affairs

PO Box 6100 Parliament House Canberra ACT 2600 Australia

Dear Secretary,

Thank you for the opportunity to provide a submission on the National Disability Insurance Scheme Bill 2012.

Epilepsy Association trading as Epilepsy Action Australia (EAA) strongly supports the principals of the NDIS Bill that ensure the legislation will “work to support the independence, inclusion, and social and economic participation of people with disability, and recognises their right to exercise choice and control over the planning and delivery of their supports”. Indeed EAA’s own vision of confidentliving,despiteseizuresunderpins all our own efforts to work in partnership with people affected by epilepsy to optimise their life outcomes.

We also note that the principles also ensure that “the NDIS is sustainable, equitable and will promote innovation and quality.” These principles have applied to our own service development over the past several years, with several of our projects supported and funded by the Australian Government.

Epilepsy is a unique and complex condition that requires a coordinated approach to provide access to a range of services and support to address a diverse set of issues and I would like to highlight some of the issues worthy of consideration as new service and funding models evolve. Further, it should be recognised that these issues are set against a lack of understanding of epilepsy in the broader community that results in stigma being attached to Australians with epilepsy, negatively impacting their capacity to participate fully in their communities and contribute to society.

To summarise the key points I want to address in this paper:

  • Epilepsy is not merely a medical condition or a one-off ‘diagnosis’. It can result in severe disablement, with or without co-morbidity;

  • Providing early intervention is critical as services offered as early as possible after the person’s diagnosis of epilepsy are more likely to prevent responses to the diagnosis which may negatively impact on development and lifestyle options in the future;

  • Services innovations that deliver equitable and consistent services to people with epilepsy living in Australia must continue to be identified and supported, particularly those that address geographical and cultural barriers; and

  • Given the unique and complex nature of epilepsy, understanding consumer needs through robust research which produces strong, independent data is crucial for designing effective services and formulating policy.

Background to Epilepsy

It is estimated that some 670,000 people in Australia will be affected by epilepsy during their lifetime. Epilepsy is a disorder characterised by spontaneous, recurrent seizures and could affect anyone at any time, regardless of age, gender, culture or background.

These unpredictable seizures present in many different ways depending upon the type of epilepsy and where the electrochemical disruption occurs in the brain. There are over forty types of epilepsy and epilepsy syndromes ranging from the mild benign epilepsies of childhood to the very severe intractable epilepsies. Seizures can range from absence seizures characterised by a brief loss of awareness, to generalised tonic clonic seizures where the person becomes unconscious, moves involuntarily and may remain confused and drowsy for a period of time after the seizure.

While advances in anti-epileptic medications have assisted a large number of people, around 30% to 35% of people with epilepsy will not respond satisfactorily to medication and many have more than 20 seizures per day.

Meeting the Disability Requirements

Epilepsy is not a one-off ‘diagnosis’ as is often mistakenly thought. Epilepsy can be severely disabling for people in its impact on a person’s capacity to live a meaningful, independent life. Thirty percent of all people with epilepsy face significant life challenges as their seizure activity cannot be controlled by medication. People within this particular group may or may not have an intellectual or physical disability, however for these people with intractable epilepsy, the unpredictable nature, severity and frequency of their seizures is disabling, significantly impacting their ability to function within the greater community setting.

While epilepsy has been defined by the law as a disability as outlined in the three major Acts relating to disability and the rights of people with disability (the Disability Services Act 1986, Disability Discrimination Act 1992 and the Social Security Act 1991) people with epilepsy commonly describe barriers in accessing appropriate disability support and services due to the perception of having a “medical condition” without recognition of the significant disability that epilepsy imposes.

Meeting the Early Intervention Requirements

Diagnosis of epilepsy can be challenging. It is estimated that up to 5% of Australians will experience a seizure at some stage of life and 3% of these people will be diagnosed with epilepsy. The ‘tests’ and potential delay in diagnosis (as there are a number of conditions that can easily be mistaken for epilepsy) can result in the person having an increased level of anxiety when they or their partner, child or sibling are experiencing seizures. As a result, support from EAA is often sought by consumers even before a diagnosis is confirmed.

Consumers report that once an epilepsy diagnosis is made, they are often seen for only ten to fifteen minutes by the Neurologist and sent home (possibly with a prescription) distressed and overwhelmed, lacking information on what the diagnosis may mean or how they may prepare to best manage it. Once an epilepsy diagnosis is confirmed, it is essential that education and support is provided as early as possible, to the person and significant others in order to enable self-management and strengthen the sustainability of the supports available to the person.

The earlier that information and education can be provided to third parties (teachers, employers, workmates etc) the less likely it will be that the person will experience isolation, exclusion or discrimination. In addition, without such education, in the event of a seizure many people are unnecessarily sent by ambulance to the nearest hospital emergency department. For people who have a known diagnosis of epilepsy, seizures don’t usually require hospitalisation for medical attention as long as appropriate assistance is given during and after the seizure occurs.

In early childhood, epilepsy can impact the development of skills and a response of over-protectiveness can impinge the child’s natural desire for autonomy, which may also impact confidence and self esteem. In the school age child, this may be the first time parents are faced with decisions about disclosing epilepsy. The parents’ level of openness about epilepsy will directly influence the child’s acceptance of the diagnosis. Secrecy about the diagnosis can impact the child’s confidence and self perception as well as create a barrier to strategies that could be put in place to enhance inclusion in the new environment and promote learning.

Whether adult or child, early intervention is critical as services offered as early as possible after the client’s diagnosis are more likely to prevent responses to the diagnosis which may negatively impact on development and lifestyle choices in the future.

Service Innovation

Epilepsy Action Australia has committed to delivering equitable and consistent services to all people affected by epilepsy in Australia, building services around support, education and interventions that facilitate client self-management. For several years the organisation has been working on a National Service Strategy incorporating design of innovative services and delivery tools to facilitate the availability of comprehensive services across Australia, accessible to people with epilepsy, their families and carers, no matter where they live.

For those living in these areas distance impacts on the ability to access services, with most based in metropolitan areas and while development of our strategy continues, support from the Australian Government several years ago has already enabled EAA to establish a national service centre as a referral point for enquiries and requests across Australia. Staffed by Service Consultants and Educators, and easily accessible via 1300 epilepsy (1300 37 45 37) or epilepsy@epilepsy.org.au, this centre also provides a base for key activities such as technological based service delivery for individual clients and groups, as well as e-based learning for health professionals and other stakeholders coordinated across Australia to ensure equity and quality.

At the heart of EAA’s strategy to work more efficiently and develop a sustainable model is the online learning and education program. Launched in May 2012 the Epilepsy Action Online Academy provides epilepsy learning and education for people living with epilepsy, parents, carers and health professionals. The Online Academy is a key component of EAA’s National Service Strategy to fulfil our commitment to deliver equitable and consistent services to all people living in Australia. It expands our services as part of Australia’s digital economy and further broadens our national footprint to all Australians, especially those in ural and regional areas. The Australian Government has recently provided funding for the development of six additional online modules through the Department of Health and Ageing.

Further support from Government and alterations to current public policy will be required to address unmet need related to epilepsy, but we recognise that this sort of support can only come with a strong evidence base.

Understanding Need

Given the unique and complex nature of epilepsy, some years ago EAA initiated a partnership and research effort that will produce strong, independent data. Conducted by The George Institute for Global Health and supported by the Australian Government ($676,000 NHMRC grant and $248,000 ARC Grant), the Sydney Epilepsy Incidence Study to Measure Illness Consequences (SEISMIC) was launched in June 2010. This first major Australian incidence and impact study will examine the incidence and impact of epilepsy in a large and representative population.

SEISMIC is the first study into the incidence and impacts of epilepsy undertaken in Australia and will measure the determinants and impact of newly diagnosed epilepsy on quality of life, mental health, clinical and community service use, and household economic burden. SEISMIC will also be the first study to model high-cost clinical, psychosocial and baseline economic characteristics to ascertain which people could most benefit from intensive support networks to prevent compromised outcomes.

Clearly the findings of this important study will better inform consumer groups, State and

Federal Governments on how to improve support for Australians with epilepsy.

The investment in the sector by the Australian Government was greatly welcomed and EAA is keen to ensure dialogue continues during this research. EAA intends to use the SESMIC research to better inform service delivery options and to guide policymaking. EAA hopes that with this information the Australian Government will work with EAA to ensure that any new nationally co-ordinated services strategy is supported with the right policy settings and appropriate funding.

Outcomes improved via improved education, both of clients and their carers will have significant flow on benefits into the health, disability and aged care sectors in terms of improving outcomes for people with epilepsy

About Epilepsy Action Australia

Epilepsy Association trading as Epilepsy Action Australia is a company limited by guarantee which provides professional service delivery Australia wide.

Beginning in 1952 as a local association, Epilepsy Action Australia has developed into the largest provider of specialist epilepsy services in the community for people with epilepsy and other seizure disorders, their carers, families and the broader community.

The organisation has developed high level expertise and a rich base of epilepsy information and provides a range of services that promote self-management including client and community education, seizure management planning, case management, emergency medication training, workshops and residential camps. Services are delivered by phone, videoconference and internet, with a physical presence in most states and territories.

Contact Information:

Website: www.epilepsy.org.au Facebook: http://www.facebook.com/epilepsyactionaustralia National phone: 1300 epilepsy (1300 37 45 37) Email: epilepsy@epilepsy.org.au Address: PO Box 879, IN YOUR CAPITAL CITY

Carol Ireland Chief Executive Officer and Managing Director

January 2013