Keypoints

• This submission is an individual submission from Allison Reilly.

• I have Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), Fibromyalgia

  and Postural Orthostatic Tachycardia Syndrome (POTS) as well as other medical

  conditions/comorbidities including Severe Endometriosis and Migraines.

• I have one to two good days a week where I function at 20% of my pre-condition

  functionality. Most of the time I function at 10% of my pre-condition functionality.

• I was rejected based on one part of the act, successfully appealed that to be told I would

  be rejected on another part of the act, with no avenue of internal appeal left to me.

History

I contracted Glandular Fever in 2008 and I never recovered. By 2009 I was unable to

continue working in the IT Industry in a Senior Executive Consultant role and was forced to

cease trading in my own Company. It was a role that I loved, but the cognitive issues and

post exertional malaise that I suffered with minimal exertion meant that I could no longer

keep up with the demands of working. In 2010 I was diagnosed with Myalgic

Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), and Fibromyalgia. I have also

since been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and Severe

Endometreosis.

Application to become a participant with the NDIS

I am mostly housebound and average 1-2 good days per week where I function at around

20% of my pre-condition ability. The rest of those days are around 10% of my pre-condition ability where I am either bed bound or couch bound.

I have to choose carefully what I do each day. Each activity whether it be physical or mental is taxing on my body. It is often a choice between having a shower or going to our local shop for a coffee and some much-needed interaction with the outside world. I cannot do both. I cannot do grocery shopping any more. Social occasions are few and far between as the payback for going lasts days or weeks or even months. Planning for such an event requires total rest for days before and after the event.

I cannot read or retain information easily. I have lots of trouble remembering what was said in telephone conversations.

My husband is my full time Carer. He had to give up his job as a Bank Manager in order to look after me and my son who also has a disability. I am reliant on my husband to supervise showering, taking medications, and if I am required to walk any distance, as I am prone to fainting and crashing to the point where I can no longer function at all. On my bad days he assists me with showering and dressing.

My husband also does nearly all the household duties. I can occasionally help out with cooking meals, but this requires me to lie down afterwards.

Application to become a participant with the NDIS

I applied for NDIS in June 2017 as I wanted firstly to keep my existing supports, and secondly to obtain extra assistance in developing independence and to be able to access the wider community. I supplied information from my GP, included copies of specialist reports and detailed my level of functionality.

After three and a half months I received a request for further evidence of my functional impairment from my treating specialist (dated 16 September 2017). I sent in a letter from my

• Specialist, a Consultant Physician supporting my diagnosis and the impact on my
• functionality.

In October, 2017, I received a phone call from the National Access Team at NDIA. The

• assessor told me that she was rejecting my application based on the fact the report from my current specialist mentioned that a previous specialist had suggested that I take Ritalin (Methylphenidate) and I had declined to take it. She said that because I had declined to take the drug, I was not considered “fully treated” and therefore did not meet the criteria for NDIS under the following:

    Section 24(1)(b) of the NDIS Act, which requires that you must have an impairment
   
  which is permanent, or likely to be permanent.
  

With the help of an Advocate, I submitted a request for an internal review with letters from my GP and Specialists who demonstrated that Ritalin was neither an appropriate drug for my condition, nor did that they think it would make a tangible difference to my level of function.

After asking me in January, 2018 to send in additional OT Reports, I got my final response to my internal review for NDIS. After initially being rejected based on permanency, because I would not take Ritalin, and therefore not ‘fully treated’, they decided that that decision the NDIA had made was wrong and should never have been made.

However, they then rejected me based on another part of the act:

    Section 24(1Xc) - The impairment or impairments result in a substantially reduced
     functional capacity to undertake, or psychosocial functioning in undertaking, one or
    more of the following activities: communication, social interaction, learning, mobility,
     self-care or self management;

They now say I do not meet the substantially reduced mobility functional requirements because I can walk 50 meters with a walker or stick on occasion. Apparently, the assessor’s interpretation of substantially reduced functional mobility means you have to be in a wheelchair.

Now because I have exhausted my internal review arguing the permanence, I cannot request another review where I can submit a response to rejection based on substantially reduced functional mobility requirements. I feel this is so wrong as the substantially reduced functional mobility requirements were never discussed in the initial rejection. There is also no definition of “substantially reduced functional mobility”. The woman assessing the claim admitted that it is up to interpretation based on the person who was assessing the claim.

As part of this rejection they also rejected the information supplied by my OT. Even though the OT has recommended a Scooter, specialist Bed, Lift Recliner and Ramp in her report, apparently NDIA consider these “common items” and that they are not disability specific unless you have a prescription from an OT (like you would get them if you didn’t have a disability). My OT had recommended these items and scheduled a trial date in February to do so. Based on that trial, she would then write the prescription.

As I live in a rural area where services are thin on the ground. I first requested an appointment with my OT in June 2017. I got my first appointment in December 2017, and the trial date for equipment was set for 15 February 2018.

However, NDIA were not happy with that and say that because she had not already written a prescription there is no evidence that I need this equipment and therefore they cannot be considered disability specific items. They also said they do not consider a walking frame or walking stick disability specific as these are common items. Again, you would not get these items if you did not have a disability. In other words, to be classed as disabled enough from a mobility perspective you need to be in a wheelchair.

They would not wait for the equipment trial and rejected me on 24 January 2018.

I asked the about fluctuating disabilities and they said that according to their guidelines that is where you might spend weeks or months in a decline and recover for a period of time and then remit type disability. If you have 1-2 good days a week (which I had qualified at 20% of pre-condition), then that does not qualify. Most of the time I am bed bound or housebound.

• My OT has now written the prescription, however because my file has now been closed with

• the NDIA, my only step forward is taking this to the AAT with the help of my Advocate.

• However, at the moment I cannot see a way forward through this bureaucratic nightmare. The

• pain and suffering this process is causing is taking a huge toll on my health. I truly think that

• the NDIA does not gets the harm that they are inflicting on us.