epilepsy ACT

SUBMISSION TO THE INQUIRY INTO THE IMPLEMENTATION, PERFORMANCE AND GOVERNANCE OF THE NATIONAL DISABILITY INSURANCE SCHEME IN THE ACT.

Summary

The fundamental objectives of the NDIS, in so much as they put greater control in the hands of people with disability and their carers, are most sound. However the practicalities of implementation sees a very real risk that gaps in support services will emerge. Gaps which will see people with epilepsy and their carers miss out on essential support and avenues for advice.

Under the NDIS, the Epilepsy ACT will have its core funding from the ACT Government phased out. We are faced with a specific conundrum:

FACT: Epilepsy ACT’s funding is being ceased as a result of changed arrangements as the ACT Government transitions to the NDIS;

FACT: the vast bulk of our clients — the very people we support — people with epilepsy and their careers, do NOT qualify for funding under the NDIS.

The conundrum is this: as we transition, there is an expectation from Government that we rely on people with epilepsy and their carers, and others, purchasing services/advice/education from Epilepsy ACT; yet these people do not receive support from the NDIS.

The change in operation and business model for our organisation, due to the withdrawal of core funding, will be profound. There is a strong likelihood that the ACT Epilepsy Association will no longer be a viable enterprise under the anticipated NDIS funding model.

Our work program sees us:

• Provide ad hoc support on very practical issues to people with epilepsy and their carers;
• Provide education services to employers, teachers, workplaces etc, on issues associated with epilepsy’;
• Undertake public awareness campaigns to debunk the myths associated with this condition (the World Health Organisation states that epilepsy remains the most common and misunderstood neurological condition, leading to discrimination and associated issues around community contribution);

Only the provision of our education programs lends itself to limited cost-recovery. However, if we were to put a financial premium on this service, uptake would reduce.

Put simply, in the absence of continued core funding, we will transition out. Our current funding from the ACT Government has ceased (as of February 2018). We will hear later this month if this is to continue. People with epilepsy in the ACT deserve better.

Epilepsy Association ACT Inc.
ABN: 11 477 115 050
Grant Cameron Building, 27 Mulley Street, Holder, 2611 | PO BOX 3744, Weston Creek, 2611
p 02 6287 4555 | e epilepsy@epilepsyact.org.au | w www.epilepsyact.org.au

In summary, the singular interest of the Board of the ACT Epilepsy Association is to ensure that people with epilepsy and their carers are supported, and that we make the ACT an accepting, informed community, allowing people with epilepsy to contribute and lead full enriching lives.

The current approach to the NDIS implementation puts this at significant risk.

About our Organisation

Epilepsy ACT has been assisting people diagnosed with epilepsy in Canberra for over 30 years. Epilepsy affects people in difference ways and can affect people at any age. Statistics show that around 8000 Canberrans are managing one of the various forms of epilepsy.

Epilepsy ACT provides accessible support, information and connections for people living with epilepsy in the ACT, their families, their support network and the community. Our vision is that every person living with epilepsy can live, go to school, or work, in a safe, supportive and understanding environment. The World Health Organisations states that epilepsy is the most common and misunderstood condition. We strive to rectify this, so that people living with epilepsy can contribute to our community, unencumbered by community misunderstanding and discrimination.

As well as supporting individuals, we aim to deliver and promote innovative community education programs to debunk myths about the condition, and assist schools and workplaces adapt to be more inclusive.

An epilepsy diagnosis impacts a person’s whole live and independence – affecting their participation in employment, education, sport and recreation, including their ability to drive.

A recent survey of people with epilepsy living in the ACT, showed that Epilepsy ACT provided crucial and timely support for individuals and families from diagnosis through to management of their condition. This local and personal support has a significant positive impact for families navigating a stressful diagnosis. This information and support is not able to be provided in a standard GP or specialist appointment (which often take several months to schedule).

What we need.

Epilepsy ACT funds its service delivery with a combination of fee for service training delivery, fundraising, donations and government funding. While the organisation is in a good financial position, government funding is essential.

Epilepsy ACT contends that ongoing funding is required. Funding of approximately $86,000 per annum has been provided in the past. On top of this, we raise approximately $62,000, to ensure we can offer the quality services provided.

Arguably, Epilepsy ACT should not be viewed through the prism of the NDIS. It has become clear that treating epilepsy as a disability, for the purposes of funding, does not fit the new NDIS funding model. The outlook for many people with epilepsy is live the most normal life the can as long as they have the right support and treatment.

We would be happy to expand on the issues raised in this submission. Please feel free to contact us epilepsy@epilepsyact.org.au or ph 02 6287 4555.

Yours sincerely

Richard Eccles Chair

Fiona Allardyce Executive Director