NDIS Inquiry
About me
I’ve been an NDIS participant since 2018. I was born with cerebral palsy. As an adult I didn’t really know how to manage the impact of that until the NDIS came into being. In 2015, I developed spinal damage as a result of a lifetime on crutches. Since then, I have spent more time out of paid employment than in it. I was denied the Disability Support Pension and placed on Unemployment benefits. I am 53 years old.I started working again a few months ago.I am employed on a casual basis.
NDIS portal
I find the NDIS portal much less helpful than it might be.
When I look at my bank account website, I can easily see all of the past transactions. It seems reasonable to me that my NDIS account should similarly show me, at a glance, all the claims I have put in most recently. It doesn’t. I need to search by the date the claim was submitted or the date the service was provided. I can’t, for example, search for the provider name as I can in my bank account. I don’t know why my NDIS account provides so much less functionality than my bank.
It would be helpful if my NDIS account display functioned much more like my bank account, offering a range of different ways to search for information and the simple ability to see what transactions have been completed most recently without having to enter search criteria.
The Plan
In formulating my plan, I am asked for a lot of personal information about how my life works. I’ve had several plans and still don’t understand the purpose of the introductory section “My Profile”. There is no other situation in my life where I am asked to provide this kind of information in writing. Why does my plan require it?
On the plan,it says, “This is personal information about me and I can choose to share this information with my service providers.”
- That’s not an explanation of why that information was requested in the first place.
A paragraph
that explained, “This information is included in your plans so that…” would be a start. Who uses
this information? How do they use it? As a person who is perfectly capable of explaining my
situation to providers, do I need to have anything written in this section of the plan at all?
Inappropriate use of first person language
I find the language used in the plans patronising and offensive. Stop the overuse of first
person in my plan. The use of the first person pronouns, “I”, “me”, “my” , “mine ‘’ are
supposed to indicate that the person to whom the plan belongs wrote the statements that
include those words.
Instead, the NDIS assumes my voice and misrepresents me by repeatedly inserting
statements in first person language Into my plan that were not authored by me and should,
correctly, be written in second person (you, your etc.).
The following statements are copied from my plan:
This is personal information about me and I can choose to share this information with my
service providers.
My Capacity Building supports are intended to build my independence and reduce my
need for the same level of support into the future. My progress and outcomes from these
supports will be shared at each plan review.
Unlike my Core Supports budget, my Capacity Building Supports budget cannot be
moved from one support category to another. Funding can only be used to purchase
approved individual supports that fall within that Capacity Building category.
I can refer to Booklet 3 to help me understand my NDIS plan and how to use funding,
arrange supports and services and work toward my goals. It will also help me review my
goals and prepare for my plan to be reviewed. If I do not have a copy, I can ask my NDIS
contact or visit the NDIS website.
Important changes If something important changes or is going to change (e.g. I move
house, start work or school, if I get or may get compensation relating to an injury, or if my
goals change) I will notify my NDIS contact.
All of these statements have been authored by a government worker.
They are part of the template. They are not statements authored by me, nor are they statements I would ever write. They should be written in second person to make a clear and honest distinction between my voice and the voice of the bureaucracy.
Even Centrelink manages to use first and second person grammar correctly In their correspondence and show me that tiny bit of respect. I don’t understand why NDIS chooses not to.
When the NDIS was introduced we were all told it was about offering more choice and control to disabled people and yet the written documentation provided presumes to speak in my voice.That is not my choice and It denies me control at a very basic level. The NDIA does not have my consent to choose my words.
Every time I get a new plan,I need the LAC to translate it for me.There is one section where the goals I have identified, along with the strategies to achieve them are recorded. The funding that has been granted is then in a subsequent section. It’s not always obvious which of my goals are funded by which bucket of funds. It makes me wonder just how relevant the goals that I have provided really are.
It would make more sense to me if the funding granted was listed alongside the goals to which it relates and mentioned the specifics that I have mentioned in my own goals, so that it included statements such as,
This part of the budget includes requested funding to repair your power wheelchair.
This part of the budget includes requested funding for one on one physiotherapy.
Obviously these statements should not unnecessarily restrict the use of the funding but it should be clear which funding that was requested has been granted and which, if any, has been denied.
Focus on giving us what we need not looking for ways to deny it
Over the last few years I have been working with Occupational Therapists in order to get a new power chair. The process has taken a lot longer than it should have - not only because
of the COVID interruptions but also because participants and therapists alike are left guessing when it comes to what the criteria actually are that need to be satisfied to get particular equipment and how that criteria can be satisfied.
I requested a standing wheelchair so that I can maintain strength and continue to make use of the physical ability I have to stand and to move short distances on crutches. Having the regular use of a standing chair is likely to mean I need to spend less on visits to a physiotherapist because I will be frequently exercising, with better posture than I can achieve without it. It will also to help me maintain my independence into the future without the assistance of a carer. Given that we have an ageing population and a serious shortage of care workers, it seems to me it should be a good use of funds.
The NDIA took several months to advise that they were refusing my request. I kept ringing to find out what was happening, being told that someone would ring me within 10 days, and not being called.
The letter eventually arrived. It was disappointing that it was a letter of refusal rather than an invitation to provide more of the relevant information that would enable them to grant the request. The system is clearly looking for ways to say “no” rather than ways to help disabled people get the support that we and our health providers believe will enable us to live our lives.
A new request for a standing chair is being submitted as part of my most recent plan. Hopefully this one addresses more of the far from clear requirements and will be successful.
In the meantime, I’ve just been granted extra funding because my current chair now needs a lot of repair work. It is now about seven years old and has done over 9 200km. These funds wouldn’t have been necessary if the new chair had been granted when requested.
I am also currently suffering neck pain which keeps me awake at night and means I am very tired during the day when I need to be working at my job. I expect that the postural support the standing chair will provide will help to alleviate the neck pain while enabling me to get important exercise - but of course I don’t have a standing chair yet. The pain makes me less productive at work and therefore puts my job at risk. It also makes me less able to do other forms of exercise to maintain my fitness and therefore has an impact on my general health.
The interaction of NDSI and Other Government Agencies
Fortunately, I have, so far, been able to avoid the Administrative Appeals Tribunal. If the money spent there, on lawyers, to stop disabled people from getting what we asked for had been spent granting our requests, I expect we would have a much better rate of disabled participation in the community than we do now. It’s very likely that would also flow on to a better rate of disability employment - saving government welfare spending and assisting employers. Instead, the only people who benefited were the lawyers. We need a system (and a government) that prioritises providing support to the disadvantaged rather than using us to further increase the wealth of the wealthy.
One of the reasons the NDIS refused my initial request for a standing chair was that my OT had Included mention of the fact that it would benefit my health.This was, unfortunately, too much information as the NDIS informed me that they do not take responsibility for supporting my health.
The NDIS and the health department may be able to divide their responsibilities but I am not able to divide my body in a similar way. My disability and my general health interact constantly. It makes no sense to make funding decisions assuming that’s not the case.
Both the NDIS and the health system are government funded. Any health benefit I receive from the NDIS still saves government money. It should not be turned into a reason to deny a particular support. It’s not as if I can go to the health department and request a standing chair, Rather than getting it via the NDIS.
They also refused the chair on the basis that I would use it for exercise and therefore it counted as a therapy tool. This therefore, does not fulfil the NDSI Operational Guidelines for assistive technology which state that items for treatment or rehabilitation are not considered assistive technology under the NDIS. Again, there is no other government body I can approach to provide me with a standing chair so that I can maintain the physical ability I currently have to stand for short periods and maintain my independence.
The definitions around rehabilitation and treatment that inform this definition are based on the needs of people who were not born with disability. Rehabilitation in the health system is
a time limited thing, determined according to the expected result on a body that has never
been subject to cerebral palsy. My body has been impacted by cerebral palsy for my entire
life and therefore does not respond in the same way to treatment. Treatment that may see a
non disabled person recover over a couple of weeks, can take months and months to have a
reasonable effect for me. Trying to make my needs fit the definitions of rehabilitation for able
bodied people is discriminatory and ignores my lifetime experience of disability.
The reason I am asking for this particular equipment is firmly based in the fact that I have
lived with cerebral palsy all my life. My cerebral palsy puts significant restrictions on the
forms of exercise I am able to do. I have never been able to walk securely without support. I
cannot move around without assistive technology. I used to navigate the world on crutches.
That eventually led to spinal damage. I am now only able to use crutches in a very limited
way. This makes it really hard to find ways to use my legs. As I reduce the use of my leg
muscles they become stiff and sore. That makes it harder for me to function. I am looking
for a way to maintain the mobility I have while accommodating the realities of my disability so
that I can maintain choice and control over my life in future years.
Disabled people are often marketed to employers as people who think creatively to solve the
barriers we face. The NDIS clearly does not share this characteristic. It’s time it did. The
NDIS needs to have the flexibility to deal with the realities we face rather than looking for
excuses to deny us the support we need because we don’t fit within a system designed for
able bodied people. We’re disabled. We have never fit within the existing system!
The NDIS also fails to interact well with the employment system. At the recent job summit
there was general agreement that the current Disability Employment System (DES) offers
little more than compliance policing.
When I came to a plan review a few years ago, I was nearing the end of an employment
contract. It looked very unlikely that the contract would be renewed. I Included an
employment related goal in my plan but no funding was allocated to it. I wanted professional nsupport to stay in the job market. I knew from previous experience that DES would not
provide this.
The NDIS allowed me no funding to explore my employment options once my contract job
finished. No funding is provided for career support and unless you have already received a
job offer, you can’t access the Employment Assistance Fund. There is no opportunity to
explore what careers might be open to you and experiment to find out what kind of assistive
Technology and Employment Opportunities
technology might enable you to better participate in the workforce.The NDIS could be
providing this, but isn’t.
A system that requires you to get a job offer before you get any assistance is a system
designed to keep disabled people unemployed. No employer would offer you a job if they
weren’t sure yet whether you had the required resources to do it and yet this is what the
current system expects. Any disabled people who want to work should be supported to
explore their opportunities, whether they are currently employed or not.
Providers
I have frequently had the experience when I engage a new provider of being asked who my
support coordinator is. I don’t have a support coordinator. I manage my own funding. I
should be being asked how my funding is managed. The NDIS has a contribution to make in
creating a culture where providers expect that my funding may be self-managed rather than
assuming that somebody else does everything for me.
I have also had providers insist that I pay upfront for their services. It is rare to be asked to
do that in other situations. It doesn’t happen when I engage a tradesperson to repair my
fridge. Why is it acceptable when I engage a therapist?
The excuse offered is that the providers have had too many NDIS participants fail to pay. If
that is the case then it’s a situation that needs to be remedied. Perhaps people need more
funding. Perhaps we need to arrange a better system for people who are not able to manage
their own funding. However, I am not one of the people who has failed to pay and I find it
discriminatory that because I am an NDIS participant I am asked to pay up front.
NDIA Staff
Every time I review my plan I deal with a different LAC. I’ve looked at the job advertisements
and I know that they are contract positions. I would like to see the NDIA employ all staff on
an ongoing basis so that they can enjoy secure employment and accumulate relevant
experience. This will benefit participants.
I’d like to see disabled people employed throughout the NDIA. I’d like to see the NDIA
develop employment pathways such as paid traineeships that enable disabled people to
develop the skills required to fill all available positions at the NDIA.Disabled people are
Frequently Denied Employment Opportunities
Frequently denied the opportunity to engage in employment at all. The NDIA should be looking for ways to help address this injustice. Employment income offers disabled people who are able to work a lot more choice and control than we will ever find through our NDIS packages. The NDIA needs to be an employer who doesn’t assume that we can accumulate the relevant experience elsewhere.The NDIA needs to provide pathways to acquire it.
NDIS and Age Discrimination
Eligibility for the NDIS should not be limited by age. It should be determined according to a person’s level of disability and the support they require. The current system is one that says if you are a healthy older person who has a car accident and suddenly becomes a wheelchair user, you are only eligible for aged care services not disability services.That’s not fair. A person in that situation will have a much lower quality of life than their peers and than anticipated. Likewise, older, long term disabled people have been denied access to the scheme.They should have access to the supports they require according to their disability not be disqualified by their age.Disability doesn’t end when you reach 65 or 67. In fact, it is likely to make old age harder.