Phoenix Fox

28 February 2019

My Problems with NDIS

Some experiences from a recently approved participant

To the Inquiry on The General issues around the implementation and performance of the NDIS.

I wanted to share a few very frustrating situations. I was approved for NDIS coverage in december 2018, but it was about 6 months of planning and fighting to get to that stage. My big goal, has been to get a wheelchair, and to get access to therapy to help me improve my mental and physical health. I found out, that my Autism should guarantee me access, but that NDIS has very strict requirements about who can make a diagnosis that they will consider. After researching, it became clear I would need to spend over $1000 on a report like this, to qualify for NDIS. I ended up spending $1880 with Autism Spectrum Australia, for a report which gave me access to the scheme. I think this is very unfair. I am a disability pensioner, and at that point had never been able to work in my life due to multiple disabilities. I asked NDIS if they could pay for this assessment to determine my eligibility, and they said no. Medicare also would not cover this type of assessment, because I am over 13. Even after NDIA approved me, they would not pay for the costs of getting access!

I am lucky that my father died, and I inherited a small amount, so I could afford this expense, but many of my Autistic friends are not so lucky, and cannot afford to access NDIS. I think the government needs to make it so that any assessment that is used to determine eligibility for support from NDIS or Centrelink, must be paid for by the government, no matter the age fo the person or anything else. Until that is true, NDIS is unfair!

Also, recently, I have had an occupational therapist help me try wheelchairs and do a report asking for NDIS to fund my wheelchair. I submitted the report a week ago, and called two days ago, but when i asked for an update on progress, they said i was being ridiculous.

have a very hard time leaving my house because i don’t have any mobility equipment.

I am malnourished and have bone density problems probably because of that. I am very painfully lonely a lot of the time. When I have a chair, i will be able to go and get fresh food and to eat better, to go to community events much more often, and see my friends more. I’m also thinking about going to school!

I dropped out of highschool because of my disabilities, but maybe with a wheelchair, i could get more education. For me, a wheelchair is a very urgent issue, that will do the most to improve my life, and because of my specific needs, rental options aren’t safe for me to use. It is painful to wait at home, knowing what i need and how to get it, while my paperwork sits on a pile on some bureaucrats desk being ignored. I have nothing. I should have this help.

When I call the tax office they are always fast and helpful, but NDIS are different and have a mean attitude. **NDIS phone line told me “We received request on 22nd February, it has not been long since we have received this request and i cannot escalate it. If it is really urgent contact in a couple of weeks… Please give time for the region to contact you back”.

  **I don't think what they said makes any sense.** If it is urgent, why do **i have to wait three weeks in the normal queue before they can escalate it to be seen to more quickly? Why can't they just mark it as something that is not simply maintaining or replacing equipment, but first supplying of important equipment? Why not deal with that sort of thing first? Where it has the most impact!**

  

  **I think NDIA should have more staff to deal with these AT requests and AT budget reviews,** because NDIS themselves say it can take months to get answers, and **I know someone who even waited over a year!** I think in the meantime while staff is limited, they should triage requests by how important they are, and stop giving people a mean attitude on the telephone.

  

  **I am also frustrated that NDIS providers**, and even sometimes NDIS itself, will call me on the telephone directly, instead of calling via national relay service. **I have trouble understanding people on the phones**, especially if their voice isn’t familiar. In person, **I often use lipreading to help me understand what people are saying**. But people keep calling me. Nobody seems to care that some people can’t comfortably use telephones. It is frustrating. **I recently got a call**, and i think the person said they were ndis, but the asked for what sounded like someone else's name, i thought, and i got confused and said that’s not me, and they hung

up, and then they messaged me and said they couldn’t get through to me on the phone, and I just can’t understand why this sort of thing keeps happening. I even have auslan interpreters specifically funded in my NDIS plan. Doesn’t that make it obvious that phoning me directly isn’t a good idea? I have literally never called NDIA directly. It has always been via NRS.

My impression of NDIA so far is that they are rushed, understaffed, cruel people, who care more about process and policy than empathy, but do not implement process and policy consistently either. People with the same situation get different outcomes all the time, and if you ask them direct questions, usually they wont give you a straight answer. It’s always maybe. Always uncertain. Nobody seems to know what the rules are. It seems like everyone makes it up themselves, and everyone has a different idea. If they cared about me and my needs, they wouldn’t call me on the telephone directly, and they would probably have given me more budget, and they would understand that some things are urgent and some things are not, and have sensible priorities, and they would fight to make sure the scheme is fairly accessible to everyone and not pay to access.

Phoenix Fox, 28th Feb 2019