Category Archives: Neurological Disorders

Disability Support Declined

Late November 2022, I was optimistic and had a sense of hope that I would finally have the supports I needed to maintain my functional mobility, which in turn would enable me to live a somewhat ‘normal’ albeit modified life, after coming to terms with my functional neurological disorder (FND).

I had a modest goal, requesting minor equipment and support for 2-3 days per week (physio, massage, and hydrotherapy). This request to the NDIS would decrease the need for future extended hospitalisations, maintain my current mobility, and hopefully slow or best case cease any further functional decline. Therefore reducing the cost the the health system, maintaining my ability to drive, to participate in civic and family activities, and importantly being able to continue to work and provide for my family.

I applied for Australia’s National Disability Insurance Scheme (NDIS) after gathering the required evidence and producing a highly compelling report from FND Australia outlining my functional capacity from an Occupational Therapy perspective. I spent the last three months compiling reports, letters of support, working through the eligibility criteria and ticking each item off the list.

Along with time-consuming evidence gathering, this process is/was expensive in the past 3 months, separate from my already costly health insurance premium. I have spent well over $3000 on therapies, reports, and medical appointments. Not including the additional increase in my medication regimen.

In my previous blog, I wrote about the fact my disability is permanent. My current state is my new normal. The ironic thing is that the NDIS declined my application due to their opinion of my disability not being permanent or, in NDIS language, ‘fully treated’. This is despite having letters confirming my disability from at least six separate medical professionals.

This decision means I currently have no access to formal support. I graduated from the rehabilitation day program (another reason I don’t understand the NDIS rejection). My day program ceased as I had met the goals set, noting that the physio, rehab registrar etc., have stated that I have likely hit the functional capacity. My mobility will not improve, and I need to walk at a minimum with crutches and be supervised outdoors.

I have been meaning to write this blog since the 9th of December; this was the day I was knocked back from the NIDA. Honestly, I was too mad at the ‘system’, the person who phoned me to inform me, and the decision itself.

They have stated that my FND is not fully treated, and in the formal correspondence, it was noted;

Disability requirements
Based on the available evidence, Jeramy Hope does not meet the disability requirements as set out in Section 24 of the NDIS Act, specifically: Is your impairment likely to be permanent, Section 24(1)(b)2

‘The NDIS Act requires that we consider if you’ll likely have your impairment for your whole life.
Even when your condition or diagnosis is permanent, we’ll check if your impairment is permanent too. For example, you may not be eligible if your impairment is temporary, still being treated, or if there are remaining treatment options.
The available evidence confirms that Jeramy Hope has Functional Neurological Disorder and Chronic Pain.
However, this evidence does not indicate that all available and appropriate treatment options that are likely to relieve or cure Jeramy Hope’s impairments have been explored. These treatment options must be explored before this requirement can be met’.

The letter stated my ineligibility and was highly formal, just an essential; you must explore all treatment opportunities for my chronic pain and FND.

This was despite having a chronic pain diagnosis for over 20 years, having a spinal cord stimulator, and having evidence of explored therapies over the past seven years, in addition to my FND diagnosis confirmed by specialists for over six years, with clear evidence of various treatments explored, and not being effective.

On the phone call with the NDIS, the assessor went to inform me of his reasons why I was declined and areas that I need to explore and evidence if I was to reapply. His knowledge of my disability was limited, and the additional ‘evidence’ he requested was irrelevant to my disability or application. He went to say the following –

  • That I have not completed CBT and other behavioural therapy therapies (meaning he wanted me to receive phycological treatment, despite my FND being triggered by my chronic pain and not mental health).
  • I have not completed a fall prevention course (unsure why this was a requirement, however, the rehab sessions that were conducted 6 hours per week had a fall prevention and safety factor in them).
  • They did not believe that my crutches were medically prescribed (despite this being documented in my OT & Physio reports).
  • I needed a letter from my pain specialist – regarding my chronic pain (noting this was provided by my GP, pain specialist, and in medical reports submitted).
  • I needed a letter proving that I do not have mental health (i.e., my trigger of FND is pain, not mental health).

He suggested (on behalf of the NDIS)-

  • A Letter from my pain specialist outlining chronic pain – possibly try and link to FND (although already submitted, I have now have 2 additional letters to support my application).
  • A letter from my Neurologist stating that my FND is fully treated and triggered by pain. (I now have this letter ready for resubmission; however, I am not comfortable with the wording, so I am getting the letter adjusted).
  • Completing a fall course (I don’t even know what this is). (I have had confirmation in writing by two specialists confirming that it occurred in the hospital and day program during my rehab sessions).
  • Confirmation that my crutches are medically prescribed. (again, although this was done twice in the initial application, I had two specialists write letters confirming the prescription).
  • See a phycologist to confirm I do not have any mental health condition and would not benefit From CBT therapy. (my treating team advised me that this was not needed, however, to strengthen my application, my GP has written a letter confirming that I have not requested nor in his option require mental health support).

I have 120 days to request a review of the decision; this can include additional information, reports etc. I have already added four new reports, trying to get a 5th rewritten to strengthen my application. In the meantime, I am trying my hardest to maintain my mobility, continue with conditioning exercising, and hope I don’t have a flare-up that will require further hospitalisation.

I have had various professionals and disability industry experts review my evidence, and I have written an explanation email as a cover letter outlining the gaps the NDIS have perceived even though the information already being provided.

Finally, I reached out to a formal disability advocacy organisation, and a few days before Christmas, they confirmed they had agreed to pick up my case. We will work together in mid-January to review the current documentation and prepare an application, and if needed, seek legal advice before any further application is made.

For a scheme that should be in place to assist people with disabilities, they don’t make it easy, and even though I have been in the industry for over 20 years, I have become overwhelmed. As someone who would classify me as an expert, I have found it challenging to navigate the application process. I feel it is incredibly wrong as a person with a disability to provide proof beyond already supplied complex medical records. The cost to access the scheme is prohibitive to many, and I know I am fortunate that I can request more information, assist medical professionals with the language to use, and collate years of evidence to tell my story. Many others in the community don’t have access to the means or support needed to evidence disability. The hoops jumped, and inconsistency in a person being able to decide my fate is wrong and even more disappointing, as this is happening to many others more vulnerable than me.

I will continue to fight, jump through the hoops, and find a way to satisfy the NDIS requests once this is done and accepted into the scheme. I will contemplate the most appropriate way to lodge a complaint and provide a way for the NDIS to learn, develop and grow as a scheme, as no person with a genuine disability should need to go through this.

FND, I didn’t sign up for this.

I have been struggling this week!

I’ve started the journey this month of collating evidence of my permanent disability. I have found this confronting, and honestly has lowered my mood. Having to ask health professionals to test and prod, explain my FND symptoms has caused me to reflect back on my flare-ups. I’ve dug up 7 years of notes talking to my pain, leg tremors, weird unexplained symptoms. The work is trying to tell the same story. With FND this is hard to do, and symptoms are not predictable, and can change. While I was forced to focus on the documenting the hard truth, Disability and a FND diagnosis that I have been trying to hide from. It has been confronting. Needing to ask family members to open up about their personal impact, and for me, reflecting on the cannot.

this gif talks to the struggles I've had this week. It's hard having a disability, FND.

Telling a story about your own DISability, I have found confronting and invasive. Telling this story has taken away from the things I do well and forced the focus on my deficits. When mentoring and developing leaders, I spend very little time on a person’s deficits. Instead, focusing on championing and building upon their strengths. My expertise and skills for the past 22 years have been in supporting and advocating for people with disability. I am now focused on introspectively analysing my difference. 

Disability advocacy for others, not for me

I don’t like looking after me. This is evident with my fluctuating weight, clothes choice (simple can’t be arsed.) I tend to pass on my personal hobbies (music mainly) to ensure I’m available for others. Not to sound saintly, I have found ways for me that don’t tend to bite into family time. These include a whisky at 8pm. Listening to audiobook when driving. I crank up the music when I have time to myself in the office.

Looking after me has always felt selfish, too hard, and not important. So instead, I’ve become an expert somewhat in advocating for my daughter. Jenna is autistic, and we have needed to navigate a similar journey of evidencing disability and functional capacity etc. for her these past nine years (and still do). Upon reflection, I’m learning, although painful, when I see my daughter hurting, unwell and at times angry at people’s response to her ‘difference.’ There’s still a disconnect. I am somewhat removed when advocating for others, whether that be a family member or supporting people as a career, I can seen the fix, the missing piece that will help, the listening ear, the written response etc. However; when the spotlight is turned on you, I have learnt there is nowhere to hide.

It’s hard to bring it back to me

All the games and pretending, the denial;

  • It’s only a little sore
  • I’ll be better tomorrow
  • Pushing away support saying ‘I’m okay’
  • The hopes that it’s only temporary
  • I don’t need to use aides to help me walk at home

Are zero when you are falling over multiple times per day when a therapist states in writing that this may be my new baseline, that my FND is indeed impacting me lifelong. I gave myself three months to be somewhat well again. I am in month three, still in activity therapy, living in denial that I will get better. When I look back that the past 7 years, I don’t see a time I was symptom free.

I have had times that I felt less symptoms, times I was having a good day. Acknowledging I still have trouble to accept this diagnosis, and it’s been seven years now. I reflected on my ‘good days’ as my normal. Rather that reflecting on the days afterwards that I needed to rest, or had a spike in pain. Forgetting my pain during an extended walk. I refused to acknowledge is my body telling me to stop. I had to learn this is not normal muscle fatigue, and I just need to build endurance.

Yes these comments hurt

So Much reflection these past two months, learning about myself, my diagnosis, and what I can, should and should not do.

My daughter wrote a personal impact statement this week, this wrecked me;

‘All of this in turn, has caused mental, physical and emotional strain onto the family. We are unable to do a lot of the tasks we used to (long weekly bushwalks, going to the beach, etc.) as it has become too much of a task. The family dynamic has become askew with children supporting the parents. 2 out of 4 of the children seek psychological support to aid in getting through the anxieties and stresses of daily life most children wouldn’t have to deal with. Having our dad being funded by the NDIS would relieve a lot of the stressors in not only dads life but our lives too.’

Then this one from one of my therapist.

‘In my professional opinion, Jeramy .. has a condition that is likely to reduce his functional capacity permanently and substantially in a number of areas including social, physical and/or economic participation. Jeramy .. is likely to permanently require assistance … to effectively manage the impacts of his condition.’

What’s the cause of my FND

Due to the nature of FND, symptoms are incredibly varied. Also varied is the root cause of the disorder. For me, a workplace incident over 22 years ago. This lead to chronic pain, has been the ‘the reason’ I have developed FND. Unfortunately for me, as I get older, the disorder has developed. However, as we were evidencing my claim for disability support, we found many weird symptoms, that have been with me for years. It was not something we wanted to celebrate, but it was an eye-opener for me. It’s not a sudden onset of a disability. It is a steady decline over many years that has led me to reach out and ask for ongoing support.

I have also struggled with the assumptions people have made about FND. My diagnosis is purely pain related. I don’t thankfully have a traumatic event or trigger and have been blessed despite the considerable family history of stable mental health. Note that I do have bad days or situational stressors and must reflect on how to rest. However, this is not the ‘trigger’ for my FND. I live in a high-stress environment, both personally and in the work environment. There is always a constant assumption is my legs don’t work because of an event that occurred during the week. Or another hypothesis is that I am not coping emotionally this week, as I made an error in judgment. In most cases, situational stress, work stress etc., are not a trigger for me. In short it’s my inability to stop, rest, recover and respond to my pain.

As my family has told me for years, I need to learn to listen to my body, respond when it needs rest, and react when I am in pain. Whether stretching, rest, gentle exercise, physical therapy, or therapeutic intervention. I need to make it work for me and understand that it’s lifelong, and I have the chance to have a better, more comfortable life if I respond and act on the messages my body is telling me.