I have been a “participant” in the National Disability Insurance Scheme (NDIS) since July 2017.
In November 2016 I contracted pneumonia. After 24 hours of sickness and high temperatures my partner took me to hospital, where I was diagnosed as being in septic shock. Unfortunately, the medicines used to raise my catastrophically low blood pressure led to my lower legs and fingers becoming gangrenous.
In December 2016, in the first of a series of seven operations, both my legs were amputated below the knee. In subsequent operations last year, all the fingers on both my hands were also amputated.
In September, after more than 10 months in five hospitals in southwest Sydney, I was able to return home. My reflections on NDIS are largely informed by my personal experience.
NDIS goals v reality
NDIS has very lofty goals according to its website: "NDIS will “support a better life for hundreds of thousands of Australians with a significant and permanent disability and their families and carers. The NDIS will mean peace of mind for every Australian — for anyone who has, or might acquire, a disability.”
Unfortunately, the lived reality has not quite measured up to the aspiration.
As a multiple amputee, I require prosthetic legs. As a recent amputee, I need assistance from professionals including physiotherapists, exercise physiologists, psychologists and occupational therapists. I also need assistance in daily living to enable my partner to keep working, to put food on the table for our family.
In the lead up to my first planning meeting I was residing in Fairfield Hospital, recovering from the partial amputation of my hands. The treating specialist was careful to describe my ongoing needs for disability support, most notably provision of prosthetic legs. This need was communicated clearly and precisely to NDIS planners.
But when my plan was published there was no reference to prosthetics at all. In the eight months since my first planning meeting I have received no funding at all from NDIS for prosthetics.
The same holds true for provision of a wheelchair. In the seven months since I became a “participant”, NDIS has failed to fund a wheelchair for me, despite this being identified as essential in my first plan.
While I am lucky that I am able to walk independently most of the time, there are occasions when my legs are simply too sore, or too damaged, for prosthetics to be fitted. It is unclear what the NDIS planners expect me to do in these situations: sit at home and twiddle my stumps perhaps?
It is not only the indifference of NDIS that is difficult to digest, but also the profound secrecy of the organisation. Calls from NDIS are always from private numbers. I have been kept in the dark, left waiting and regularly fobbed off by call centre staff who appear to have little understanding of the issues being raised.
NDIS is not readily accountable. Although most decisions that impact a participant are formally reviewable, requests for a review are not often acted upon in a timely fashion.
In conversation with someone who works for St Vincent De Paul, the Local Area Coordinator "partner" for NDIS in western Sydney, I was told review requests can take months to be actioned by NDIS. More often than not, the annual plan review will take place prior to the review request being considered. Requests for reviews are allowed to sit on bureaucrats’ desks for months at a time without being investigated.
It is clear to see why delaying funding for expensive items like assistive technology, including new prosthetics and house modifications, would be of benefit to the federal government. The Malcolm Turnbull government has consistently claimed that NDIS was left underfunded by the former Julia Gillard government. Delaying spending on expensive items means deferring costs, improving the bottom line in the short term.
Data from the Department of Social Services shows that by 2028–29, the NDIS will have a yearly shortfall of more than $7 billion, up from $4.1 billion in 2019–20, when the scheme begins in full. The more the funding of supports through NDIS can be slowed down for participants, the less of a drain NDIS is on the federal budget.
Before the introduction of the NDIS, the New South Wales government provided funding for home modifications for disabled people. The program that funded home modifications was known as the Community Care Supports Program (CCSP).
The CCSP would pay for both minor and major modifications to a dwelling, where necessary to allow a disabled person to remain in their home and not be forced to enter residential care. The requirement for home modifications was assessed by an occupational therapist.
The Office of Ageing, Disability and Homecare, within the NSW Department of Family and Community Services, administered the CCSP. On its website, ADHC says that it is in the process of ceasing to exist. It states: “When the National Disability Insurance Scheme (NDIS) is fully implemented across NSW by 30 June 2018 ADHC will no longer provide services.”
In my case, NDIS was informed of the need for significant house modifications — in the bathroom and two exits from the house — at my initial planning meeting in June. While my first plan included mention of the required house modifications, no funding was allocated.
Despite repeated representations from my federal MP and myself, no home modifications have yet been approved, let alone carried out. In private discussions with other NDIS participants, I am told that this is not a unique predicament.
NDIS has significantly slowed provision of funding for home modifications and assistive technology. Rather than facilitate an easy return to the home environment, it has frustrated it.
Stories in the NDIS Grassroots Facebook Discussion group suggest that the NDIS default position is to refuse assistance and force participants to appeal or seek political help. A case in point is a blind woman refused assistance for cooking and cleaning, which she had enjoyed for years through the previous state-based system, because her husband was able-bodied. The cruelty and intransigence is breathtaking.
Who is the advocate?
My personal story will have a happy ending. Home modifications will be approved (eventually) and new prostheses will be provided.
This is largely because I am able to advocate for myself and to use the offices of the local MP to put pressure on NDIS to fulfil its obligations. But not every NDIS participant has the ability to advocate for themseves or the confidence to seek professional assistance.
NDIS providers and others have told me the outlook for those from a non-English-speaking background or those with a cognitive disability is not nearly so positive. While NDIS claims to provide for identified needs, those who are unable to clearly identify their needs or who lack the ability or confidence or persistence to continue the struggle with NDIS, often miss out.
In some cases, even when funding is provided, the participant is unaware of the range of services that can be used. This can lead to a participant failing to exhaust their allocated funding and risking a consequential reduction in that funding at their next plan review.
There are also complaints from groups representing those with a cognitive disability that NDIS does not fully understand how to assess, and therefore fund, such disability. NDIS discriminates against those with depression, for instance, whose illness may be of an episodic, albeit no less debilitating nature.
On September 18 the Guardian Australia reported: “Australians with severe mental health problems are being regularly barred from the national disability insurance scheme, prompting fears that under-resourcing and a lack of expertise are compromising decision making.” The situation is worst in Victoria, the Guardian says, because mental health funding in that state has been diverted to the NDIS.
Fixing the system
Both major parties have lauded NDIS despite its many failings. And while NDIS does appear to cater to at least some of the needs of its identified participants, it remains a frustrating, imperfect and ultimately discriminatory means for providing assistance to people with a disability.
Disjunction between state healthcare agencies and the federally controlled NDIS have led to real delays in the provision of services and unnecessary duplication of assessments. A more rational way to fund the needs of people with a disability would be a unified national health service that could provide on demand assistance to all those with illness and disability.
Rather than the absurd shadowboxing between Labor and the Coalition about funding shortfalls and increases in the Medicare levy, imagine a one-stop health service. It might be funded by a real increase in taxes on business profits and could begin to provide certainty and dignity for all those requiring assistance — the sick, the aged and people with a disability.
In the meantime, NDIS must be made more accountable, more transparent, and be fully funded. Participants must be given greater access to decision-makers and reasons must be provided for all decisions made.
A quick and easy review system has to be implemented to ensure that NDIS is accountable, and that the needs of people with a disability are actually being met.
[Graham Matthews is a member of the Socialist Alliance.]