Tag Archives: Okay

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.

The New Normal

I’ve been home for six days now.

I’m extremely ecstatic being home with my wife and kids; words can’t express the joy🥰. I haven’t seen my youngest two children for nearly five weeks. I needed to be home with them all.

I’m also grateful that my wife no longer needs to visit me each day. Don’t get me wrong, her visit was the highlight of each 30 or so days. However, her anxiety about navigating Sydney traffic was definitely not her highlight.

I’ve started building a new routine at home. I was trying to get back on the cooking roster and ‘light’ house cleaning. I went for a drive, and saw extended family; I even managed a day in the office yesterday, however, FND is a killer concerning fatigue.

Need to Pause

As an illustration, the family often finds me snoring on the couch these days; I do have a favourite seat I covet; however, this is for watching TV, chatting, and daydreaming, not sleeping. The need to rest is foreign to me; it is weird; I never slept nor felt the urge to nap. I never have day naps, which is a new normal that I don’t like.

Needing to be intentional with rests on the couch, long baths and sneaky Netflix binges to switch off is a new normal. Suddenly, FND hit me for six, and I am finding the adjustment from a hospital bed and controlled space to a more unpredictable home environment hard. I hadn’t realised that fatigue was an FND symptom, and it was the first time in 7 years navigating this diagnosis, that leg tremors and pain were present.

The predictability of therapy sessions, scheduled meals, and a solid routine gave me time to recover. This post-discharge world is a little more chaotic, but the juxtaposition is that chaos is usually my happy place, but to be frank, returning to the natural world has been challenging.

sleep, tired, sleepy. new, normal
It’s been tough to be real

My First Day

After the long weekend, I headed to the office, my first time since mid-June. It was a short day for me, 7:45 am-4:35 pm (no lunch) feeling somewhat naughty 😈 going home ‘early’. The interactions with my peers were terrific; sitting in my office chair, amazing music playing 🎶 on the speakers, reminiscing the months past. It was a good day.

nods, sleep, sleepy, new, normal
Major nods

Reality Hit Hard

My imagined return to normalcy (aka 4-5 days at the office, juggling physio sessions, and being the cook at home), is currently impossible.

This FND reality is really, really hard to process.

I am usually invincible (or at least give that impression). I’ve needed to look at my diary and say no critically. Something I can’t honestly think I’ve spoken to my staff (when talking about committing time) in my leadership journey. I’m finding this loss hard. 😩😩

Finding a new normal is not something I usually welcome, and I can feel the inner wrestle setting in, the arguments with myself to keep pushing, despite knowing the effect this will have on my recovery.

What is the Correct Balance

I don’t know…..

My doctors think I am pushing harder than others with similar FND conditions (note I am one of the youngest in the rehab rotation.) I’m convinced that I need to do more, and my family are providing that sound of reason and balance. My need to ‘work’ and keep ‘busy’ is built into my DNA and something that gives me peace, but in turn, learning to utilise my energy in different ways, learning to adjust my work schedule for when I’m at my best— and most importantly learning to say ‘NO’ and be okay with this.

Lots to learn on the FND journey, and still making progress every day.