While a national disability scheme is on the way, Hunter residents are making changes to improve lives now, write Catherine Mahoney and Linda Hughes.
Catherine Mahoney and Linda Hughes are members of the Hunter Disability Support Organisation
A DIVERSE group of Hunter residents – from teenagers to seniors – sit around a large meeting table talking about what matters most in their lives.
At the top of the agenda is the National Disability Insurance Scheme (NDIS) and how to ensure people with disabilities have voice, choice and control in the roll-out and implementation of this new scheme.
Monday will see the third meeting of the Hunter Disability Support Organisation (DSO), made up of people with disability, their families and friends.
This new group is a first for the Hunter, providing a collective voice, run for and by people with disability and independent of government and service provision.
We’re taking the initiative: learning together, supporting each other and doing all we can so people with disability can have good lives, enjoying the same rights and opportunities as the rest of the community.
The decision to establish the group came from a local forum for people with disability, their family and allies last November where the positive impact of similar groups in the United Kingdom was highlighted.
Just two months later, we have a 20-member working group meeting fortnightly, and a growing number of people interested in being involved.
We are heartened by the wisdom, expertise, willingness and energy of the working group.
We’re doing it by ourselves for ourselves. We don’t think of ourselves as patients or victims or passive service recipients.
We are all too aware, however, of the inequities we face.
One need look no further than Kurt Fearnley’s acclaimed Australia Day address to learn of the plight of people with disability and our appalling performance compared to other western countries.
The NDIS proposes to address many of these failures and looks not only to what people with disability need but also their goals and aspirations.
This is fundamentally different to the current system.
The NDIS turns the current system on its head; people with disability who are eligible for support will receive a support package based on their individual circumstance.
With an individual funding package, a person with disability will be able to determine who provides their support and how they are supported.
The Hunter DSO applauds the opportunity for people with disability to have choice and control over their supports and their lives.
However we recognise the difficulties many may have in adapting to the new system.
We understand the complexity of building a life included in the community and the importance of developing our knowledge, skills and confidence to lead the lives we want.
We know it takes more than an individual funding package to build a good life.
We see the role of the Hunter DSO as supporting and building the capacity of people to imagine better lives for themselves, where they are not limited by the type of service allocated or the low expectations of others. With an individualised support package people with disability don’t have to live in an institution or group home, they can live in a home of their own, living with people they choose.
They can work in a regular job. They can actively engage in community life, pursue their own interests, meet like-minded people, develop friendships, build skills and contribute to the good of the community as active citizens.
Often such a life is considered unattainable for people with complex needs and cognitive impairments. However we know from experience that with appropriate and individualised support this is entirely possible and desirable.
Unlike disability services and government, the Hunter DSO is not limited by service and funding constraints.
Our one objective is the best interests of people with disability.
As a user-led disability support organisation, we share lived experiences, information and ideas, peer support and mentoring and ultimately will assist people in knowing how to best use their individual support packages.
In the coming months the Hunter DSO will be holding workshops around the region to assist people with disability and families to prepare for the NDIS.
We gave evidence at Thursday’s public hearing of the Senate Inquiry into the NDIS draft bill, highlighting the importance of independent, user-led disability support organisations and their unique capacity to support people with disability and families to maximise the benefits of the scheme.
For people with disability to live the lives they choose, we need the support of individuals and community groups who believe in the empowerment and inclusion of people with disability.
To learn more, please visit www.ndishunter.net.au.