NDIS and the role of advocacy
When the National Disability Insurance Scheme (NDIS) was launched in March 2013, it carried high hopes for Australians with disability, their families, carers and providers.
It was meant to signify a shift from a welfare-based system of support to an insurance approach that worked with people with disability and aimed to improve their long-term outcomes.
But the reality is, the experience has fallen short of expectations. While the NDIS funds equipment and support workers for people with disability, there are so many other aspects involved to ensure recipients can be socially and economically independent and live a happy and ordinary life.
And this is where disability advocacy services come in.
What is advocacy in disability?
As defined in the National Disability Advocacy Program (NDAP), disability advocacy refers to the ‘speaking, acting or writing with minimal conflict of interest on behalf of the interests of a disadvantaged person or group, in order to promote, protect and defend the welfare of and justice for either the person or group.’
Despite the value of giving people with disability a voice, Mary Mallett, CEO of Disability Advocacy Network Australia (DANA), points out that “the advocacy funding is a tiny, tiny percentage of the whole disability funding - even though it’s importance has increased rather than decreased since the introduction of the NDIS.”
Ms Mallett says without advocacy, people with disability and their families are unable to effectively navigate the NDIS system and have their voices heard regarding important decisions in their lives.
“If people can’t navigate the NDIS themselves, then they need an independent advocate to help them,” says Ms Mallett. “It comes down to people being included in society everywhere and at all levels, so people with disability can participate in every way they want to in their community.”
Thankfully, there are tools out there like First2Care; an NDIS Plan Management App which allows people with disability to navigate the NDIS with ease. The pre-planning app enables NDIS participants, workers, and providers to connect and nurture relationships with each other; thus producing a smooth and seamless NDIS journey.
The most important part is; each person is treated as an individual.
Advocacy fills the gaps in a problematic NDIS
Kevin Stone, head of the Victorian Advocacy League for Individuals with Disability (VALID), recently highlighted that the NDIS cannot solve all issues with a cookie-cutter approach.
Simply allocating funds to people with disability is not enough.
“Each person is supposed to be treated as an individual, but in order to get everyone through, they have cut heaps of corners,” Mr Stone told The Sydney Morning Herald in May 2017. “For people with relatively straightforward needs it has been a boon, particularly those who weren't getting any disability support before. But for the people...who have an intellectual disability, autism and "challenging behaviours", the NDIS has ushered in a period of greater bureaucracy and neglect.”
While the transition to the NDIS has proved to be problematic over the past five years, at least this has been recognised by the 2017 NDIS Pathway Review. The review indicates there hasn’t been enough transparency, engagement, and easy-to-access communications, and steps are now underway to make an improvement.
In the meantime, advocacy groups need to continue working hard to ensure the needs of Australians with disability are met.
What are they main types of disability advocacy?
In Australia, there are six broad models of how disability advocacy is approached in Australia. These are:
Citizen advocacy: People with disability are matched with suitable volunteers.
Family advocacy: Parents and family members are provided assistance with advocating on behalf of the person with disability for a particular issue.
Individual advocacy: The rights of individual people with disability are upheld by working on discrimination, abuse and neglect.
Legal advocacy: The rights and interests of individual people with disability are upheld by addressing the legal aspects of discrimination, abuse and neglect.
Self advocacy: People with disability are supported to advocate for themselves, or as a group.
Systemic advocacy: Aimed at removing barriers and addressing discrimination to ensure the rights of people with disability.
Systemic Advocacy is a particularly important model of advocacy when trying to improve inclusiveness on a broader level. However, it’s a very negative system.
“For an individual with disability, if they want to make a change happen they have to prove that they have been discriminated against,” says Ms Mallett. “Someone with disability can’t just change the world around them, which is why systemic advocacy groups are needed; through changing the government and keeping the issue alive.
That’s all outside of the NDIS and it’s all about every other area of life that people want to be a part of.”
Small Fish in a Big Pond
Currently, advocacy funding is provided by the government of each individual state and territory or via the National Disability Advocacy Program (NDAP). However, since advocacy groups are usually run by one person or a small group, they often find themselves unable to keep up with the demand.
According to Melanie Muir, Advocacy Team Leader at Leadership Plus, one of the largest advocacy organisations in Melbourne, there isn’t enough advocacy available.
“Just in our state, we had to close our waitlist because we were overrun this month. Another organisation had to do the same,” says Ms Muir. “Most of the time, advocacy organisations are under-resourced, overrun, and doing their best for people with disability.
The need is far greater than what we’re servicing. But there are still a lot of people who don’t know about advocacy is and what it can provide.”
Double-Edged Sword of Advocacy
So, there are two issues at play.
On the one hand, there are people who are aware of advocacy services, but unable to access them due to lack of resources.
On the other hand, there are still a lot of Australians out there who are stumbling their way through the NDIS and unaware of the advocacy options out there and the full benefits.
“Because the amount of funding is low, advocacy groups don’t usually have a budget for marketing,” says Ms Mallett. “Most of the groups have been working in the area for 20-25 years and are well known in the disability sector, but not necessarily outside of that.
As the disability system has been disrupted so significantly by the NDIS, they have less time to network at expos or take part in network meetings. For people who are very vulnerable and can’t speak up for themselves, they rely on other people to recognise that they’re being abuse or something is wrong.”
The Next Steps to Take
If you have a disability or have family member, friend, or neighbour who might need further support with navigating the NDIS, you can check out the Disability Advocacy Finder to search for Commonwealth and state and territory government funded disability advocacy agencies in your local area.
Leadership Plus (Melbourne) - http://leadershipplus.com/
Queenslanders with Disability Network - https://qdn.org.au
Speaking up for you - http://www.sufy.org.au/ndis-role-advocacy/
Over to you
Have you ever accessed advocacy services? Do you know what they mean to you, and where to find them? Can you recommend any services that might help someone in a similar situation?
We’d love to know in the comments below.