Joint Standing Committee

P.O Box 6100 Parliament House Canberra ACT 2600

From the NDIS ACT

The purpose of the National Disability Insurance Scheme (NDIS) is:

1. Support the independence and social and economic participation of people with disability;
2. Enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports;
3. Promote the provision of high quality and innovative supports that enable people with a disability to maximise independent lifestyles and full inclusion in the community.

The NDIS is a new scheme that is supposed to make the lives of people with a disability easier and help them to pursue their goals and get back into the community. It is also supposed to treat the person with a disability with the same dignity and rights as anyone else.

The following reflects my personal experience with the NDIS and its impact on my life and the effect on my family.

I am a 58-year-old female who has a spinal cord injury and other disabilities including Meniere’s disease, severe hearing loss, Gerd, gastroparesis, Raynaud’s disease, arthritis degenerative spinal disease and chronic pain.

I am also a victim of domestic violence.

I am currently living independently at home and trying to get back into living my life as productively as possible including pursuing my favourite hobby of 25 years - showing dogs. I also have taken up gardening, swimming and other activities with the aim of getting fitter and healthier, so that I can remain living independently.

I have two beautiful sons, one is an environmental scientist and unfortunately, my other son now has a severe brain injury due to a work accident 10 years ago. As a result, I am his guardian/financial manager.

I have a Certificate 3 in Business Administration and a Certificate 4 in Community Services. While I am unable to work and put these certificates into practice, my goal is to one day possibly do volunteer work somewhere and use what I have learnt during these courses.

When I heard about the implementation of the NDIS I was a little sceptical about it, but my family and friends convinced me that it would help make my life a little easier including relieving the stress of having to pay for wheelchairs etc.

In mid-2016, I was notified that I was accepted into the NDIS scheme. I was told I would receive a letter notifying me when a meeting was to be held to do a plan outlining my goals for my current and future needs.

I did not receive a letter, but instead received a phone call asking if I was available the following day to do my plan. Naturally, this was not convenient and had to be organised for another time so that I could get a support person to be with me. This meeting was held in October 2016.

At the meeting, I felt extremely overwhelmed. Many questions were asked which, at the time, I felt I did not answer in the best way possible or in a way that was to my advantage.

I asked for services that I thought would assist me in my daily life; for things that I thought would assist me in getting back into the community; and for activities that would help me stay fit and healthy, so I could remain independent.

Examples include: a new manual wheelchair (used daily); a new electric wheelchair (used to drive and show my dogs); soft tissue manipulation and Pilates (to help with my shoulders that are wearing out from pushing my wheelchair and to build up strength and keep fit); and help from a handyman and domestic house cleaner. We discussed the fact that I had a history of domestic violence, as this has affected me in terms of a lack of trust with people, it was important that it was included in the plan.

A plan was written up and it was read back to me to see if I agreed with it. I did agree, and I signed it. I received a plan from the NDIS just before Christmas 2016. However, it was nothing like what had been discussed at the meeting and what I had agreed to. Many of the very important facts (e.g., the domestic violence issues) had been left out and many things were stated incorrectly. The plan essentially made no sense.

I rang the NDIS many times about the plan and what was in it. Each time I would get someone different who would give me a different answer and tell me how to go about getting answers to my issues. This was extremely frustrating and time consuming. I had supplied letters from my specialists, psychologist and Pilates instructor about what my disabilities where and what they felt I needed to help me stay independent and achieve my goals.

I was finally told that if I wanted the plan changed, I had to apply for an internal review. In addition, some things approved in the plan could not be accessed, e.g., more conversions to my car. Apparently, this was because I had not sent in an occupational therapy report. I was never told that I needed an OT report, but once I found that an OT was required, I organised for one. I let NDIS know that a report was on its way to them. In the meantime, a letter was submitted with the reasons for an internal review. This is when my nightmare with NDIS truly began.

I also filled out a complaint form online (27th January 2017) and received an automated reply saying someone would reply to my complaint within 3 weeks. I am still waiting. To date I have not received a reply to my complaint.

On the 14th February 2017 I received a phone call from the NDIS. A lady stated that I had asked for an internal review and she was the one doing the review. She asked if I had time to talk. I was totally taken aback as I was not prepared. I explained to her that I had trouble hearing her, but she continued anyway. I had not been pre-warned or given the choice of having a review done by phone or in person.

Her manner was very aggressive from the start. I felt she was very condescending to me and when I tried to explain my point of view about things, she just kept talking over me. This made me feel very angry and frustrated. I told her that she was being condescending, but she did not seem to care. Her reply was “I am sorry you feel that way”. I felt that she was not interested in what I had to say, and that she was talking to me as though I was a child and not an adult.

I felt that she was just quoting from what was in front of her or from a manual and was not interested in me as a person and what my needs where or what the real issues were with my plan. She also kept asking if there was someone that was available to talk for me. Why? I am very able to speak for myself and decide things for myself. This was discriminatory. After her phone call, I was so upset and extremely frustrated that someone could or would think that they could speak to another person that way in this day and age made me very angry and upset. I did not know where to go or who to talk to about what had happened in the interview. I felt alone, and that the situation felt hopeless.

During the following weeks, I rang the NDIS many times to try and find out what was happening with the review and to get an answer regarding the most important two issues that were raised in the review- the soft tissue manipulation and the Pilates.

While waiting to hear the results of the review I contacted my local federal member to see if he could help or at least listen to my issues with the NDIS. While his secretary was very nice and helpful, the local member would not see me. It was referred to the Minister who looks after the NDIS.

On 12th March 2017, I received a phone call from the NDIS, a woman saying that she had a message that I had rung, she could give the answer I needed about the funding for the soft tissue manipulation and Pilates. The answer was they would not fund either of them, and she gave me a very complex explanation as to why the NDIS would not fund them.

On the 14th March, I received another phone call from the NDIS from the same woman that rang on the 14th February and did the internal review.

She again asked if I could talk. She proceeded to start talking as if she was reading from a script. I told her on many occasions that I could not follow her. Again, I did not get the opportunity to decide if I wanted the meeting by phone or in person.

Again, she was very aggressive in her tone and very condescending to me. She informed me of her decisions and outcome of the internal review and told me that a letter would be sent to me with a new plan in 10 days. She was not interested in my views about her decisions. She also gave me a very different explanation from the other woman that had rung two days ago as to why the soft tissue manipulation and Pilates would not be funded.

In the end, the conversion began to get very heated when I tried to put my point of view across to her and ask questions about her decisions. She would not listen and kept saying that I would get the new plan in the mail. The phone call was then abruptly ended by her.

I was so distressed by this call I did not know what to do. I did not know where to go to get help and advice. All I knew was that things that I needed were being denied. What was supposed to be making my life better was making it a living hell.

I received a new plan 10 days later and I found out that I was now worse off than before.

I also received a phone call from a woman asking me if I understood the new plan as they had been told that I had contacted the Minster in charge of the NDIS. She treated just as badly as the woman who did the review.

The review letter and new plan stated that because I was self-scripting, the NDIS could not agree to a new electric wheelchair etc without an occupational therapist report.

This was the case with all the things that I had asked for and the reasons that they were denying them.

The new plan still missed out very important information regarding my personal life which the NDIS needed to know and missed out other important information that was needed.

I had not been given time to get OT reports or any other reports and send them to the review person before she made her decision. This to me was very unfair as I live in a regional area and it is very difficult to find and engage an NDIS registered OT.

It stated that if I was unhappy about the decision I would have to do an external appeal. You could not discuss the review report with anyone or try and work out a solution with the NDIS.

The NDIS was advised that I would be applying for an external review after I found an advocacy agency to help me.

During this time an occupational therapy report was supplied to the NDIS with regards to the extra conversions needed for my car.

It was a good report and set out individual items with prices for each item needed. It was rejected by the NDIS.

It was asked why it was rejected and it was stated that there was no total at the end of the report. It was suggested that they could add up to get the total if they needed it. The reply was “we cannot do that”.

This occupational therapy report was submitted again a few months later in a different format and to this day I have not had a reply from the NDIS.

I was confused, worried and stressed by the whole thing and did not know what the best thing would be to do. I was waiting to have an interview from the advocacy agency to find out what I should next do regarding the NDIS. I had a phone interview in April with a representative from the advocacy agency and during the meeting was told I had to apply for a legal aid solicitor just to negotiate with the NDIS.

“Why do I need a solicitor to just negotiate with the NDIS?” I asked. It was explained to me that it was because the NDIS had a solicitor. I did not have the money for a lawyer, so I had to apply for Legal Aid. What a waste of taxpayer’s money.

By now, I was so stressed that at times I thought of taking my own life. Not only must I deal with the everyday life of being in a wheelchair and my other disabilities etc., I also must deal with my ex-partner harassing me on a continual basis and all the psychological issues of having been in a domestic violence situation. I also had to deal with my disabled son and his issues. Now I must deal with the extra stress of dealing with the NDIS.

Weeks turn into months. I have now been able to get all the OT reports that the NDIS said that they required. It took several months due to my living in a regional area and there being only one NDIS registered OT in my area.

While all this is happening, I am in constant pain due to sitting in a manual chair that is not correctly fitted.

At one stage, a hearing date had been set by the AAT but due to me not receiving all the relevant notices, it had to be deferred.

While all this has been going on, I have been able to have some supports through the NDIS. I was receiving these things before the NDIS started and would have continued with regardless of the NDIS e.g., home cleaning, handyman, repairs for wheelchairs, respite (for shopping), incontinence aids CAPS.

I will admit that having the NDIS pay for these has helped a lot but the things that I really need help with I am being denied.

I had a meeting on the 14th August with my advocate and a solicitor from legal aid to discuss what I should expect from this process and what my expectations are.

A mediation date was finally set down on the 11th September 2017 at 4.45pm. This meeting was only to discuss what was expected from both parties. It was not a negation hearing.

I have received many emails and phone calls from my solicitor as to where things are up with the NDIS, but due to the slow response from the NDIS, things have moved along very slowly indeed.

During this time, I desperately needed a cushion for my current manual wheelchair. My coordinator rang the NDIS to find out if we could just use the money from my core supports as the cushion cost under $1,000.

She was told that I needed another OT report and a quote for the cushion. This was done, and the report was submitted to the NDIS on the 29th September 2017. So far there has been no response from the NDIS even though they were told it was urgent. If Anglicare had not kindly paid for the cushion I would still be sitting on a cushion that was no longer any good.

Another conciliation meeting was set down for 10th October 2017, but it was cancelled due to the NDIS not being ready. This was very stressful for me. I was anticipating what was going to happen at the meeting and I was already stressed about it when the meeting was cancelled at the last minute.

Another conciliation meeting

Another conciliation meeting time was set down for the 14th November 2017 but again this was cancelled by the NDIS the day before after stating they were not ready. They just keep dragging it out. I feel that this was in the hope that I, the respondent, might give up.

Finally, my solicitor asked for a direction hearing and more support from the AAT so that the NDIS had to respond in time. I feel that the NDIS really do what they want. They will not negotiate. It is their way or no way. It does not matter what evidence you provide to them to prove that you need something. I believe they hope you will give up on things so that the NDIS will give me something. I feel that they are hoping that I will go away or give up, but I do not think that they are negotiating or giving anything at all.

They requested an occupational therapy report, but they do not seem to be taking any notice of what the OT has recommended and what is in my best interest long term.

I have had to give up on the soft tissue manipulation. The report recommends two sessions of Pilates a week to build up my strength, then move onto a group session. This would stop the need for a hoist to put me to bed etc. It would also give me time to continue with counselling with my psychologist and put a plan in place preparing for the group sessions. Now I have had to reduce it to one day a week hoping the NDIS will fund it. I have also had to reduce the number of months for funding. It was recommended for 12 months, but the NDIS only want to pay for 3 months before moving onto group sessions.

I believe that this is going to go on for months and I cannot see a good end in sight for me.

If I do not get funding for the soft tissue manipulation, the Pilates and the other items that have been requested then I will slowly deteriorate and will not be as independent as I am now. I would not be able to continue with the community activities that I am now doing and my hopes of joining in on more community activities will not be achieved. I see myself withdrawing and staying at home due to being unable to get myself around as well as I used to. I will also not be able to transfer from my wheelchair to my bed and will need a hoist and possibly two paid for support workers to assist with the transfer. Eventually I will need someone to help dress and wash me. This will be a greater expense for the NDIS than paying for me to stay fit and healthy.

In late November I rang my State member of Parliament out of desperation to see if someone would listen and hopefully help me with the NDIS.

On the 11th December 2017 I had a meeting with my State member and explained the issues that I had been having with the NDIS. Even if they could not help, at least they gave me the time to listen to me.

One week after seeing my State member my solicitor received an email from the NDIS saying that they had reviewed their position on two points and put forward a new proposal. It was not exactly what we wanted but it was a much better offer and one that I could work with.

I also had a phone call from someone from an NDIA office asking about the cushion for my wheelchair.

Why did it take my going to my state local member to get the NDIA to listen or see any sense or worthiness in my case?

On the 3rd February 2018 I finally had an agreement with the NDIS signed off by AAT. This is nearly one year since I started my battle to get what I feel I was entitled to at the start.

Another planning meeting

Another planning meeting is needed to discuss my new plan for the next 12 months, but this has been a headache to organise with the NDIA due to miscommunication with and incompetent NDIA staff. While I wait for this to happen I still do not have any of the things that were asked for in the 1st plan 12 months ago. I am waiting for a new manual wheelchair and electric wheelchair etc. I don’t expect things to change with the NDIA and my life which was supposed to be made easier is only going to get harder and be one big headache. What ever happened to the NDIS giving people with a disability choice and control over their life?

Recommendations

• That the participants must see their plans before it is made final. This might mean that it takes several meetings, or emails but it would save many misunderstandings in the future.

• There needs to be a process of negotiations that a participant can have with the NDIA if they are not happy with their plan before the first review occurs. Participants need opportunities to work with a LAC officer to try and find a way to work out their issues with the NDIA and their plan.

• There needs to be a better review process, not just one that leaves no room for negotiations. A review process should be one that looks at what the problems are in the plan and then makes suggestions on how the participant can solve them or provide information that would help the NDIS make a decision that result in a positive outcome. The participant then should be allowed time to get all the reports or evidence to the NDIS. This review process should also be conducted by someone or a panel that specializes in the field of the participant disability or disabilities.

• The NDIS should take on board the reports that specialists write and what the occupational therapists write - that is why they request them and pay for reports in the first place.

• When a request for something is made to the NDIS, a reply or response must should be sent to participants so that they know it has been received by the NDIS.

• Complaints need to be answered not just an automotive response, and in a timely manner. A year after I submitted my complaint I am still waiting for someone to get back to me.

• Having one person to deal with your case would make it much easier for people rather than getting a different person handling your case every time you ring and giving you a different answer to your issues. It would also help in building a relationship between the participant and the worker, which would mean workers would come to better understand the problems that the participant is facing, and they could work together to find better solutions.

• The NDIS needs to become less inflexible. It was set up to help make the lives of people with disabilities easier, not so much harder that you want to end your life.

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