Natasha Brake, who works in disability advocacy, is vision impaired and has been trying to set up her NDIS plan. She reflects here on her tortuous journey through the NDIS process.
There are a couple of things everyone should know about the NDIS.
Firstly, everything at the NDIS is very, very slow. From the time your region comes online to the time you receive your notice to apply takes months. From the time you have your eligibility assessed to your first planning meeting takes months. After that you have the plan implementation to look forward to. Which – you guessed it – takes months.
Secondly, never assume knowledge. I presumed that an agency specifically set up to provide supports for people with disability would have a good understanding of accessibility. I also presumed that choice and control would mean that I would be listened to and treated as the ‘expert’ regarding my disability. How wrong I was.
Through my job at Disability Advocacy Resources Unit (DARU) I take enquiries from people who are looking for advocacy support. Increasingly, these enquiries are about issues related to the NDIS, and there are some common themes. People are completely confused about the process and are frustrated by the explanations they’re getting from the agency.
Even though I had been hearing the bewilderment and frustration for months, I still couldn’t quite believe things were that bad. I have a disability: I have low vision; so I decided to sign up for myself.
The first thing that happened was I received a letter in the mail saying I was eligible for the NDIS. This meant I must have already been identified in a system somewhere as having vision impairment. But did they really think sending a printed letter to a vision impaired person was accessible communication?
Anyway, it turned out I was eligible to be assessed for eligibility – not yet actually eligible – so that was the first process to sort out.
Once my eligibility was assessed and confirmed I had the opportunity to speak with an NDIS representative about my preferred format: electronic, provided in a text-based format such as Word, RTF, the body of an email or web-based pages. I stated that PDFs and hardcopy documents are not accessible to me.
I got really good at this spiel – I had to do it no less than four times, to different representatives from the agency. Printed information and PDF attachments kept arriving. Each time the representative was very apologetic and assured me that it wouldn’t happen again, but it kept happening.
Needless to say, it became easier to empathise with the frustrated people calling into DARU.
So many people are trying to be nice about the NDIS (I include myself here, prior to becoming a participant), saying, Look, it’s such a big reform, it’s going to take time. But it seems to me they’ve got the basics wrong, the fundamentals, and they really need to be called out on it.
The Local Area Coordinator (LAC) assigned to conduct my planning meeting did her best to get the system to work for me, but despite her best efforts I was left feeling quite disempowered. I’d brought along a pre-planning template that outlined my goals: for me, adaptive technology was the support I needed to maintain my independence at home, at work and in the community.
I was taken aback to be told that adaptive technology comes through a whole other system that requires assessment and a recommendation from an expert: in my case an occupational therapist.
My attempt at being my own expert failed miserably. I said I needed a CCTV magnifier for home use (I use one at work that was funded through Job Access). I said I have been using this type of electronic magnifier for the past 25 years – the one I have at home is about 20 years old and is in desperate need of replacement, the focus is no longer sharp and it can’t be used for hand-writing. I suggested that I would be capable of completing the report if there was a template available, but this was dismissed and an item for assessment was recommended for inclusion in my plan.
The conversation then turned to who assists me to get dressed in the morning, who helps me at home with gardening, shopping and cleaning, and whether I am able to shower independently. At least I had my first lesson in NDIS speak; I now know that I receive ‘informal supports’ for these daily tasks!
Not surprisingly, my plan arrived as a hardcopy letter in the mail. My husband – oops, sorry; my informal support – read out the main headings to me with an associated dollar amount. None of them sounded like ‘Occupational Therapy’, ‘Assessment’ or ‘Adaptive Technology’, so I had no idea if this plan was going to meet my needs or not.
I tried getting an interpretation and clarification from the LAC, who suggested that if I wasn’t happy I could request a review. I said I wasn’t able to tell yet whether I was happy or not because I had no idea what had been approved. Thankfully I could appoint a Support Coordinator because my plan had a line item that was helpfully called ‘Support Coordination’. This person ended up helping to interpret what I had received and giving me ideas on what my budget might look like in terms of supports.
I’ve been at this for over a year. I now have a gardener, I’ve been assessed for a CCTV magnifier and the report has been submitted. I don’t know yet whether a CCTV magnifier will be approved because it takes the NDIA nine months to decide that. It ended up being an Orthoptist who did my assessment. She was embarrassed to share the report with me because it needed to highlight deficits, rather than strengths. This is a huge adjustment for therapists.
By the way, her recommendation landed on the same CCTV magnifier that I had identified in my own research as the most appropriate.
I have had good outcomes from the complaints I made to the NDIA and the Commonwealth Ombudsman about the information access problems I encountered. Both have assured me that systemic change is happening. The Commonwealth Ombudsman agreed with me that Australian Government agencies need to comply with accessibility requests under the Disability Discrimination Act. The NDIA is reviewing everything about the plans including layout, accessibility and availability, and Word format will become an option available to all participants.
Cynically, I acknowledge that the NDIS is now working for me. I’m still awaiting the Word version of my plan but the next vision impaired person who requests one will not have to wait as long as me or have to jump through so many hoops. I count that a success.
Now when I’m asked, ‘Should I join the NDIS?’, my reply is something along the lines of, ‘Unless you have a really urgent support need, just wait a few years. By then a lot of this process will be sorted and you’ll get a plan that actually works for you.’
It really is hard communicating with the NDIA. You can be as clear and precise as you like but they just can’t or won’t listen. They need time to realise that people with disability know a lot about their disability and have had a lifetime to learn to adapt.
They’ll trust us eventually.