The NDIS is not everything
Source: Eureka Street
El Gibbs – 09 November 2017
A disabled man is in prison because the justice system fails people with disability. Advocacy organisations highlight his case publicly and continue to call for change. This has happened before and will happen again while mainstream services, such as prisons and courts, are so hostile to people with disability.
Francis has a National Disability Insurance Scheme (NDIS) package, designed to support his individual needs, but this has not been able to ensure he has an equitable path through the world, nor should it. Cuts to many other forms of disability support, outside the NDIS, mean that inequalities in access have profound implications for disabled people.
Currently, in NSW and Queensland, there are campaigns underway to save disability advocacy services that work with people in situations like Francis’. These fights are an indicator of the profound changes happening in disability services across the country, and what is getting lost amid the new world of the NDIS. The recent Productivity Commission report into NDIS costs said ‘the NDIS should not be seen as an oasis of support, surrounded by a desert where little or nothing is available’.
Much existing disability support funding is being rolled into the NDIS, leaving myriad gaps in the progress towards equality for people with disability. This just reinforces the belief that people with disability aren’t welcome in the rest of society. We only get to be over there, in the special NDIS place. This is hardly progress.
The world can be a hostile and unwelcoming place for many people with disability. Disabled people experience considerable disadvantage because the world is designed for non-disabled bodies. There is little room or space or design to accommodate different ways of moving or communicating or understanding. Infrastructure is often unusable and much of the built environment is only for those with a particular kind of body that operates in a particular way.
What is disabling is less about an individual’s impairment than about these structural barriers in the world. Unemployment can be a result of discrimination and a lack of accessible workplaces; health inequality for people with intellectual disability is a result of a lack of skills in clinicians, and under-treating of chronic conditions, not because of the disability itself.
This understanding of disability as a social issue demands a social response; one that takes into account the intersecting structural barriers that people with disability face. It is in this context that the much neglected National Disability Strategy (NDS) was created.
“Advocates can help individuals, but can also address systematic barriers that people with disability face, and advocates are often themselves people with disability.”
The NDIS was intended to be a small part of the overall system that is intended to address this gap in services and supports for people with disability. The NDIS works within the NDS to improve the access to mainstream services, and start to reduce the impact of structural inequality on people with disability.
The introduction of the NDIS was intended to fix the enormous problems with the disability support system. This is how people with disability get the individual support they need to go to work or school, to have a meal and a shower, to play sport or go dancing. These supports can be speech therapy, a wheelchair, help to learn how to use public transport or to get some exercise. They are related to what an individual with disability needs for their particular impairment.
Previously, the disability support system was broken, underfunded and acted as a lottery. Some disabilities qualified for support, and some did not. Some areas had support, some did not. The NDIS is intended to make sure that all people with disability can access the supports they need, when they need them. The NDIS will, however, not meet all the needs of all disabled people who have the right to the same range of services as other community members.
In NSW, the introduction of the NDIS coincided with the dismantling of the entire NSW disability public sector, including advocacy services. Most people with disability will not be eligible for the kind of individualised supports that the NDIS provides. They will be using mainstream services.
Disability advocacy can help to bridge this gap, helping people with disability get equal access to the range of government, and private, services that everyone contributes to. Advocates can navigate bureaucracies, speak at tribunals and write letters and emails that are often inaccessible for many people with disability.
Advocates can help individuals, but can also address systematic barriers that people with disability face, and advocates are often themselves people with disability.
The proposed de-funding of the NSW and Queensland advocacy systems will leave those states with much reduced advocacy programs, at the same time that more people with disability will be coming into contact with mainstream services.
Advocacy by people with disability, for people with disability, is also incredible important. Many advocacy organisations are run by people with disability who understand deeply what it is like to be shut out of mainstream services. Capacity building among all people with disability, particularly people with intellectual disability and Aboriginal and Torres Strait Islander people with disability, must be at the centre of the future of advocacy.
People with disability are an integral part of the community, yet much of that community remains inaccessible. The NDIS will not address these systematic barriers that people with disability face. Advocacy, both individual and systematic, must continue after 2018.[Note about language use: I am a disabled person, so use that language, but will use people with disability when talking more about policy. Please see this article for a good explanation of why disabled people use this term.]
Be good to address the needs of unpaid parent carers of long term, from birth, intellectually disabled (PWID) offspring and, as we age, we rely on paid advocates for support for our loved offspring often living at home.
Our son with down syndrome with various physical and health problems, including chronic illness who requires a good diet, free of certain foods, and in one case medication and a another form of dietary care, is now 45 and lives at home.
As his mother I have cared and supported our son from his birth, 45 years ago, actually saving his life on a few occasions.
I have cared for him for much longer than I was carefree. Our son was born when I was 25 years.
His father is home more now and able to lend a hand more than previously when he worked full time and more(often away for considerable periods of time when I was left to care alone for a number of children and our son with ID). Our situation is representative of many similar other mothers/parents who, from back in the early 1970’s brought their severely disabled babies home to love, care, educate, and nourish and we’ve been at it, in our case 45 years, along with a great many other parents in same circumstances.
None of us has access to holidays.
What are those?
Most people in retirement have some freedom after rearing their brood, if they are healthy. We have none, really, as exhaustion takes its toll, although our son receives necessary NDIS.
And no, group home care is not his or our choice, while not large, group homes remain institutional care serviced by casual and often changing/revolving carers with little to no attention to individual care of people with quite complex needs. Despite what the glossy adverts may state, care is basic, if that. There is often neglect, and sadly abuse occurs.
We and our peers with intellectually disabled offspring have been around long enough to evaluate what’s on offer, and group home care represents the pits for our son and his peers. For government/NDIS it is also very expensive.
We desperately need unpaid advocates to support us and our PWID, for as we age, our ability and stamina begin to wither.