My NDIS plan has a provision for an “all -terrain walker”. I need it as due to my MS. My OT provided a report and quote for an all terrain walker at the beginning of October. She provided this report to NDIS as the quote is above the NDIS benchmark for all-terrain walkers.
I contacted NDIS today to see what the delay was in processing this request. I was advised that the request had not been forwarded to the assistive technology team for assessment, and that such requests are not automatically forwarded to the assistive technology team. The NDIS call centre operator had to manually forward it to that team.
Regardless of the outcome of the request, I am very disappointed that in 2018, a request for assistive technology provided to the NDIS portal is not automatically directed to the appropriate team. I will now have to wait an indeterminate period of time for the assessment to occur - NDIS cannot advise when the assistive technology team will assess my request.
I have been in touch with my OT and she has advised that she submitted the “Assistive Technology OT report outlining (my) need for the walker and the quote, directly to the (NDIS) Assistive Technology team on 1/10/18.” And further that she does this for clients “via the same email for all assistive technology applications as per the NDIA procedure” and she can provide confirmation of this email.
When I spoke to the NDIS call centre on Friday 23/11, this was not what I was advised. So now I am at a loss about what NDIS has done with my request or where it is up to now.
As it might now be possible to provide further advice to the Committee, I must say that, as a person with MS, I find the blanket-ban on air-conditioning for those of us who rent homes very difficult. My condition means that heat seriously affects me. The MS pain increases a lot when it is hotter than about 26 degrees, and also when the nights are warm. I am in a private rental property, so installing air-con is not considered reasonable or necessary. Truth be told I would forfeit almost all my budget (bar the household cleaning) if I could use it to install air-con. Nothing else would improve my quality of life more. If I had “choice and control” this is what I would do. While I have a portable air-con unit it does not work well at anything over 32 degrees (even though I bought it 12 months ago and its worth $800) I must stay in a small room for it to be effective, so sleep and stay in one room in my place until the temp drops below 26 degrees. I know many people would be “more comfortable” with air-con. For me it is a matter of how much pain I am in. MS doesn’t discriminate about whether you do or don’t own a home, but the effects of the NDIS policy does.
On a more general note:
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I waited 6 months to have my application for NDIS application to be processed, and had to call NDIS many times to speed the process.
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When I initially requested an all-terrain walker, before my plan was approved, I was not told of any bench-marking process - otherwise I would have obtained a quote to include in the plan proposed to NDIS
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After my plan was approved, my “NDIS Local Area Coordinator” (NDIS LAC) did not explain that anything in my plan was bench-marked. I assumed that I would be able to work with the OT to find a suitable walker. I asked the NDIS LAC about the plan in detail - i.e. how many hours per month can I see an exercise physiologist? How often can I hire a cleaner - as I can’t clean the house myself? Is this allied health profession considered to be covered by my plan? I was provided with no detail - only the plan NDIS provided me with - which does not provide enough detail to figure out what is and is not covered in the Plan. I only found out recently that I can claim to have my (modified) car
cleaned, as I cannot clean it myself. I was never told this by anyone - (this matters, as I am on disability pension).
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When I did advise my NDIS LAC of the cost of the all terrain walker, she advised me that I would have to foot the difference between the quote and the NDIS benchmark. She did advise that I could re-apply to NDIS for the quote, and that it would take a very long time, possibly 6 months. And that if I wanted to, I should reapply for it next year, as my plan was being renewed in May 2019. I ignored her advice, and reapplied for the walker
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In fact, I have received no support from my NDIS LAC at all - I was initially assessed, then on approval I was given a briefing about it. Since then I haven’t heard from her, except returning my call about the walker (as per above advice) When my plan was approved I was given a website to try to source people who might be able to provide me with the services - the NDIS LAC has not provided any support in trying to find these services. I am new to being disabled, so don’t know about these services. The NDIS website states that LAC roles are to help me:
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Learn about support available in your local community;
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Understand what you can expect from mainstream supports – this is supports like education, health, and transport
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Sustain informal supports around you – this is family, friends and local community members.
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I do not believe that telling me about one website means the NDIS LAC has provided me with these services. I also believe that since my Plan was approved, the NDIS LAC role has become more limited, at least in terms of what the NDIS website states it is…
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Clearly someone knows what is covered by my Plan, as a precise figure had been put on it. But I remain in the dark about those precise numbers and the services that have been approved. I have not spent a serious percentage of my plan, partly as I have not and still don’t fully understand the plan. I have been told that whatever I do not spend in the first year, my NDIS Plan will be reduced by that amount in the second year. If this remains the case in 2019, I think it quite unfair, considering the above. I am sure I am not the only one in this position - either in relation to knowing about or accessing services.
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While I have a higher education, and am familiar with Govt ( I worked in the NSW Govt for about 20 years as a senior policy adviser) and trained as a social worker I have found NDIS really hard to negotiate, I am still learning. Many don’t have the skills I have been lucky enough to gain. Yet with this education and knowledge, I find it hard to exercise “choice and control” when I don’t know what services / products are out there, and what services/ products can be paid for within my approved plan.
I understand that we are all new to this - the government, the providers and the ‘clients’. But at the very least, by now the NDIS could provide information to us clients, so we can begin to exercise some choice and control. That choice and control cannot occur in the information vacuum which currently exists, even for articulate and assertive people like myself.
I appreciate the time the Committee and yourself has taken in considering these issues.