House debates

Tuesday, 23 July 2019

Grievance Debate

National Disability Insurance Scheme

5:21 pm

Photo of Anne StanleyAnne Stanley (Werriwa, Australian Labor Party) Share this | Hansard source

The NDIS is a bipartisan scheme that gives family and people with a disability a choice. Well, that's what it's supposed to be. It's not supposed to make things more difficult or cause stress to participants. Yet we see, time and time again, Australians with a disability, their families and their carers struggling to deal with a system that has been stripped to the bone by this government and that includes too much red tape.

The coalition are deliberately underfunding the NDIS, especially around staff, so they can prop up their budget position. They're doing this at the expense of my constituents with a disability. Where the NDIS has been successful, it has had incredible results for those Australians who need it. When it works, it allows people to live fulfilling lives and participate in their communities. However, we've heard, time and time again in this chamber, the personal stories of those whom the NDIS has failed. It's a repeat story. Members have stood here and explained the shocking stories of their constituents who are without funding, without assistive technology and unable to get clarity on their plans. The stories are shocking but, sadly, all too familiar.

One of my constituents is a quadruple amputee. He had an NDIS annual review in August 2018 and had no funding for assistive technology in that plan. He sent a request for the AT just before Christmas last year and gave the required quotes, justifications and reports. He requires funding for two AT items. The first is replacement sockets, liners and sleeves for his prosthetic legs, because his prosthetics no longer fit correctly. This means it's dangerous for him to move around. He also needs domestic prosthetics that he can put on by himself to go to the bathroom at night or for any emergencies. The issue here is that the bathroom modifications that were done to apparent NDIS specifications do not allow him to use a standard commode, and the higher commode is too dangerous for him to use without the domestic prosthetics. Despite this, he still manages to work three days a week, relying on his prosthetics to be able to do his job.

In January he came to my office as he had received no response to his application for AT. When I inquired with the NDIS as to where his application was at, the answer I received was that the request from the occupational therapist had been sitting unactioned for months. It took until March before his plan was reinstated and his funding restarted.

A division having been called in the House of Representatives—

Sitting suspended from 17:24 to 17:46

As I was saying, I've written to the minister about the issue of assistive technologies. In that letter I made it clear that requests are not being actioned within a reasonable time frame. Many of my constituents have been waiting for well over 12 months for their AT requests to be approved. These are essential pieces of equipment. They are required for their everyday lives—items like hearing aids, prosthetic limbs, car modification for wheelchair transport. There's no point in having a wheelchair if you can't get it in a car. My constituents are suffering every day whilst they wait, often with little or no communication from the NDIA.

To add further stress, the quotes the NDIA are providing are only valid for three months; however, the AT requests are not reviewed by the NDIS within that time period. This leaves my constituents having to arrange new quotes every three months—a time-consuming, frustrating and stressful exercise. The majority of my constituents do not have a funded support coordinator, so they rely on themselves to arrange quotes during their spare time. Anyone who knows knows that is very little.

My constituents have also told me about the serious issue of the funds for their AT requirements, which have been discussed at review, not being included in their plans. Local support coordinators have told me that, ideally, funding for AT should be included as an approved, stated item in the plan. Requests for reviews are taking excessive time to process. According to reports from my constituents, often it takes six to nine months for the review to be actioned. Whilst this is an extremely long time, we need to note that, after nine months without action by the NDIS, the request is considered null and my constituents are forced to wait three months for the planned annual review. This makes submitting a review request completely redundant—another time-consuming and frustrating exercise. During this time period, my constituents are often using their funding as they feel necessary. As the review request takes so long to be actioned, they're depleting their approved funding. It is a dangerous game to be forced to play, as there is often no visibility of when or where their request will be actioned. They may even run out of funding. Put yourself in their position: imagine running out of funding and having no visibility or knowledge of when you might receive further funding.

Not only have I had a number of constituents come to me about their own personal struggles with the NDIS; there are those who have come to me regarding their children. One of those mothers came to me about her 19-year-old son. In August 2018 she requested an urgent review of his plan, to include specialist psychological services. She was contacted by the NDIA and given an email address if she needed support, as her son is considered 'priority at-risk'. With no clarity about his care, and his needed psychological support services not forthcoming, all this mother was given was an email address if urgent help was needed.

Another mother came to me about her son who's 11 years old and has ROHHAD syndrome. This is rapid-onset obesity with hypothalamic dysregulation, hypoventilation, and autonomic dysregulation. It's a rare, life-threatening syndrome. It means that the system which controls necessary life functions, such as breathing and heartbeat, is affected. This 11-year-old boy requires a ventilator. He has severe behavioural issues and often detaches himself from his ventilator. His mobility is rapidly decreasing and he's now housebound. It's too dangerous to take him outside or manoeuvre him in a car without modifications. He can't attend school or medical appointments. His application had been under review since June 2017 when his mother came to me in August 2018. It had been 14 months, and this boy still had no answer on funding from the NDIA.

There's a case of a mother of a 12-year-old boy with Down syndrome. They came to me last year as their funds were running low and they didn't know where to turn. She told me she received a call from an NDIS rep, who effectively told her that she should be caring for her son at home and not working full-time or, if she couldn't, maybe her 16-year-old daughter could take on that job. This is an absolute disgrace. For the NDIA to tell a mother to go home and be a full-time carer or to put the responsibility on a teenager is sickening.

I've also been working with one other family over the last year. They came to me because they were having trouble getting their reviews dealt with and actioned in a timely manner. Mr and Mrs Hew have two severely disabled young adult children. He and his wife are their carers, with support from various NDIS providers. After finally getting the reviews and plans in place, the family was satisfied they could meet the needs of their loved ones. Unfortunately, a month ago, their major service provider wrote to them to tell them that, with no warning, they were no longer going to provide services to the family and that they had three months to find new services. Obviously, given the significant major needs of this family, this caused an amazing amount of stress. Mr Hew attributes his heart attack and subsequent surgery to the stress caused. He and his family are still trying to find new support services before the service is withdrawn.

Let's take a moment to consider the chronic underfunding that is causing people with disabilities to go without much needed AT and services and cause stress to their already challenging situation. The government slashed services and stripped $1.6 billion to achieve their surplus. They are so focused on the word 'surplus' that they forget about the people who are in need, where that $1.6 billion could easily be spent. Boasting about a surplus when they are achieving it because of drastic cuts—as children don't get the help they need, parents are being told to stay home and teenagers are being told to care for siblings—is just appalling. Australians with a disability are waiting in administrative limbo as a result of those same budget cuts.

You can't take away funding for Australians with disabilities and forget about the long-term needs of one of the most disadvantaged groups in our society. How well our society functions depends on how we act with each other and how we look after the people who need help. I am constantly seeing and hearing about the impact of this in my electorate. The impact is on real people, real families and real carers. They come to me because they are in a state of despair and have nowhere else to go. The government and the minister must fix this systematic lack of resourcing and deliver the desperately needed services that are part of our bipartisan agreement. The people of Werriwa and I won't stand for another three years of neglect.

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