Tag Archives: Disorder

NDIS Knock Back No. 2

I have been working on my NDIS application since August 2022, with nearly six months of evidence collection, specialist appointments, and storytelling.

I was rejected again by the NDIS today after a request for an appeal was denied.

With me spending months explaining and evidencing that my trigger of FND is pain and not mental health or trauma etc., they have excepted this fact. However, now have stated my chronic pain is not ‘fully treated’ noting I have provided the following:

  • Evidence that my chronic pain was from a workplace injury over 22 years ago
  • I see a pain specialist and have letters from two dating back to 2018
  • I have increased treatment since 2017
  • Specialist medication therapy
  • Regular Physiotherapist, massage, and Pilates
  • Steroid injections, dry needling
  • Radio Frequency 3 times per year for three years
  • Multiple MRI’s
  • Multiple hospitalisations and the need to receive four separate rehabilitation in patient care,
  • Podiatrist review and treatment
  • 2021 having a spinal cord stimulator installed.
  • Referred to Neurologist to work in partnership with Pain Specialist in 2022.

This was my rejection response letter

I am not satisfied that this criterion has been met for your neurological impairment resulting from Functional Neurological Disorder and your physical impairment resulting from Chronic Pain.
Importantly, this criterion is not questioning the legitimacy or permanency of any diagnosis, but it is assessing the permanency of the impairment and functional impacts (for example, your reduced capacity for mobility, self-care etc.) that result from these diagnoses.

The NDIA acknowledges that you live with limitations that affect your functional capacity, that you have had to adjust the way you do things and rely on others for assistance. However, to meet this criterion, the evidence must demonstrate that you usually need disability-specific support to participate or complete activities in one or more of the six key activities assessed (communication, social interaction, learning, mobility, self-care and self-management).

I understand you require and benefit from equipment such as Canadian Crutches. Reliance on such items are not considered substantially reduced functional capacity as the items required are considered to be ‘commonly used items’ rather than specialist equipment or technology that is specifically designed to increase the functional capacity and participation of people with disability. Section 5.8 of Becoming a Participant excludes commonly used items. If a person can mobilise with a commonly used item, then it will not satisfy the requirements of Section 5.8.l

NDIS rejection letter dated 6/02/23

The example used in the NDIS instructions and guideline state that a commonly used item is like prescription reading glasses. This is a considerable stretch similar to a walking aide that still, for the most part, traps me in my home, car or workplace, unable to do things with my family and often misses out because of my inability to mobilise.

In short, the rejection was solely because I can use cheap, regularly available mobility equipment to enable me to walk and mobilise (even though this is done with great effort, prone to falls & need supervision and support when in crowded areas. I needed a prescription that you can’t buy from a chemist. Or need to be ‘more disabled’ (paraphrasing here)

So I am back to square one, encouraged by the NDIS to use my GP management plan and private health insurance to receive the support I require.

The purpose of applying for the NDIS was to ensure I maintained my current mobility.

It ensured I could continue to work, pay taxes, and have a somewhat ‘normal’ life.

Not returning to the hospital every 12-18 months with a significant flair-up and having to learn to walk each time (noting the impact on the health system and broader society).

I’m asking for a minimal plan from the NDIS, a modest request, one that each engagement seems like an impossible task.

The system is backward. It is set up to look for ways to reject someone’s application. The scheme is not looking for ways to help the vulnerable and those who genuinely require the service.

I want to work.

I want to have an opportunity to participate in civic and social activities.

I need to be able to support and be available for my family.

Without the NDIS support, I won’t be able to continue the above long-term.

I think I’ve got 3-6 months left until I will require more intensive support.

a yellow pencil in between the pages of a notebook

My Disability is permanent. My current state is the new normal.

Rehabilitation has been a large part of my weekly routine since late august (between 5-14 hours per week) and it is coming to an end.

Rehabilitation finishes

After nearly 5 weeks in the hospital, close to 12 weeks as an outpatient, I have two sessions left, i.e., 4 hours of support left.

This is something that I have been told to celebrate, as rehabilitation finishing means I have met my clinical goals. I’ve entered into a phase of maintenance. Bluntly for me a place of realisation that this is potentially the best I will ever be.

I’ve seen this happen before over the past six or so years. It’s been tough, but I’ve somewhat improved to a point I can mask and ‘pretend’. This is what has hit me so hard, in previous times of intensive rehabilitation we’ve seen more improvement.

This week I was encouraged to celebrate that I could walk (with crutches) marginally faster, however I was slower in my sit-to-stand times, and my falls have continued at least once per day.

This doesn’t feel like a completion or a success. Yes, since my hospital admission I have progressed from a standing frame, wheelie walker to crutches. But then we have a full stop. I have arrived at my new normal. I’m struggling to be ok with this.

What was

Yes, I have been ‘unwell’ and had mobility issues for over 6 years; there have been peaks and troughs, and boom and bust periods (extended periods). Despite my pain, gait and walking complications, I have had periods when I could still do the things I love without too much planning or effect (the need to rest).

Yes, I walked with a limp, was in constant pain, and struggled with moderate exercise. Still, it didn’t seem to impact family holidays, as the planning I put in place was enough to ‘pretend’ all was ok, and the pain was tolerable to push a little more.

Yes, this was a complicated relationship with my disability and pain. However, this enabled me to do the things I loved. For example, our weekend walks were painful, but the company was great, and my mind thanked me for the exercise, conversation and fresh air.

My work life was somewhat ‘normal’ as I was in senior management and mainly in an office or car. Only those I trusted or who were close to me saw the leg tremors and significant fatigue in the afternoon and evenings.

I wasn’t embarrassed, I just wanted to live in make-believe that my disability didn’t affect my everyday.

I knew that it was likely that I was on a two-year cycle and I was waiting for the crash. A return to rehabilitation. When I say waiting I mean that I: push hard to cram in memories, experiences, career goals, study achievements, advocacy, and simply quality time with my wife and family.

In my mind, and simple logic, the cost reward always was worth it.

Previous Scars

a yellow pencil in between the pages of a notebook
Photo by DS stories on Pexels.com

This week I submitted my NDIS access request.

I still have war wounds from my last request approx. 4-5 years ago, applying for my daughter. Having to constantly share her most painful experiences in a clinical and formulaic manner.

Our first go at applying for the NDIS only achieved funding for approximately 1/3 of her therapy needs with no additional supports. We gathered more evidence, challenged the NDIS, took them to arbitration and saw an increase of over $90k.

The biggest hurdle and hurt that I think scared me the most, having to argue for a young girl who was in a dark place, and the state and federal governments wouldn’t agree on who was responsible for support.

Even multiple times the NDIS encouraged and challenged us as to why my wife doesn’t quit her job and be her full-time caretaker.

I’m so nervous and anticipating I will need to open some of these wounds and start retelling my story.

Private Physio

I have continued a relationship with my personal physio, seeing him once per week. This has been extremely beneficial, but I’ve hit my private therapy limits for 2022.

Decision time, do I go to the GP and establish a care plan (Medicare partially covered allied health) or do I continue to pay the $100 out of pocket to ensure I can at least function somewhat during this phase of unknowing.

NDIS Application

So I’ve submitted my NDIS access request form. The NDIS has 21 days to respond, but that response could be a no, a not yet, or a meeting to talk about my support needs, the waiting is hard.

Life goes on

While this all bubbles away in the background, work continues, we are building a house and planning a holiday to visit our oldest daughter in Adelaide.

The new normal is hard, and the additional pressure of what’s next, what’s the long-term plan, will I get better, will I get worse plays with my mind.

So for now we continue to move forward, even if it’s on crutches and slowly.