Author Archives: Jeramy Hope

About Jeramy Hope

My Story Living a full life with a Functional Neurological Disorder; I’m Jeramy, a husband, father of 4, an advocate for people with disability and a lifelong learner. I am passionate about mentoring and developing leaders. Have a love for the outdoors, long drives in the countryside and exploring our great country in our campervan with the family. I have chronic pain, intermittent orthostatic tremors and a functional neurological disorder. However, I try not to let this slow me down. I live a whole life; I work hard, play hard, and unless my body has forced me, I never stand still.

NDIS Take 4

Leave a reply

Another Waste of Time and Money

My National Disability Insurance Scheme (NDIS) journey has stalled again, with at least another 9-week delay. I will likely be in the hospital before this next meeting, still waiting for the NDIS to accept me into the Scheme. Not being able to satisfy the questions they asked my clinical team (More on this later).

I don’t remember a time in my adult life I wasn’t in pain. I have learnt to mask, tricks to take the edge off, faking it purely keep running anyways. 

I had a workplace injury when I was 20. 

As a result, I have chronic pain, which has recently been defined as a permanent disability in its own right.

As such, my baseline functional mobility has steadily declined since 2010. All because I went to the bathroom one morning getting ready for work (amazingly, my boss picked me up that morning because I couldn’t drive but was adamant I was going to the office). When I stood up from the toilet, I heard my hip pop, leaving me in agony with a partially dislocated hip. Over the six years that followed, I was subject to a plethora of tests, diagnoses, new injuries, hospital stays, multiple surgeries, and an extensive list of symptoms that never made sense, oh, and many incorrect or partial diagnoses.

I learnt in 2016 that I had also developed a Functional Neurological Disorder (or FND for short) because of my chronic pain (More about FND here).

I am currently going through the Administrative Appeals Tribunal (more information here, AAT ) in short, an independent body that reviews decisions made by a commonwealth body (for me, the NDIS)

For those counting at home, this is my fourth interaction with the NDIS trying to gain access to the Scheme. (I did go through this process 5 years ago for my daughter)

I have just concluded my second case conference. There was a simple instruction at the first case conference. For a medical professional, to answer some prepared (from the NDIS Lawyer and disputes team) questions. These questions were to focus on the following:

“Section 24(1)(c) requires that the Applicant satisfy the Respondent that his Impairments result in a substantially reduced functional capacity to undertake one or more specific functional activities, being communication, social interaction, learning, mobility, self-care and self-management.”

Our response was detailed and evidence-based and referenced my functional capacity on good and bad days, clearly articulating my lifelong Disability and impairment.

This was meant to be the end of it. 

Either the NDIS liked what I wrote, or they would send me to an ‘Independent Medical Assessment’ (more than likely an Occupational therapist).

Even though we met the brief and answered the question (exceptionality well, mind you), the NDIS Lawyer and Disputes Team had ‘one more question’ for my GP (I had under seven days to deliver this response).

“The Agency would like to thank you for the information and response you have sent through in relation to the targeted questions. They have greatly assisted the Agency with understanding your condition and functional capacity. The Agency does have one further request for information and that is just in relation to your flare ups in relation to Functional Neurological Disorder. In order to assist the Agency would you be able to provide some further information from a medical practitioner in relation to how often your flare ups occur and how long these flare up episodes last for?”

My GP complied and confirmed again that:

“Jeramy can experience exacerbations of symptoms on a weekly basis and that may take several days to return to current baseline or ‘best level’ of functioning. Over the past year Jeramy has experienced severe exacerbations, with acute on chronic Disability, approximately every 3 months and these have resulted in hospitalisation. These exacerbations have lasted 4-8 weeks with ongoing slow recovery to baseline over another 4-8 weeks. So overall, these severe exacerbations can last up to 4 months.”

Jeramy continues to experience significant Disability and the need for assistance outside of periods of severe exacerbations.”

We again met the brief and answered the question; the NDIS Lawyer and Disputes Team acknowledged my letter and email, and we waited for the tribunal hearing.

I’m starting to get angry.

I was told again that there were more ‘targeted questions.’

Despite having a significant amount of information about my Disability, functional capacity, and impairment, clearly articulated at high standard numerous times, this has not been enough.

I got emotive in the hearing, explaining all the work I had done over the 12 months prior, the reports, the specialists consults, the thousands upon thousands of dollars spent on reports, working with a specialist OT going line by line over the NDIS access guidelines.

We still aren’t being heard. 

Although I had chronic pain and FND before 2020, I, for the most part, could independently manage all his care needs. I have been continuously employed as a senior manager in the disability sector.

Although I am educated, articulate, and driven to be the best in my chosen area of employment, this definitely has been an obstacle in interviews and reviews with the NDIS. Because I can’t fit neatly in a box, its easier to say no and decline my claim. 

The NDIS Guidelines state that an urgent decision can be made within 5 days (concerning accessing the NDIS Scheme) if:

  • The immediate risk to self, others, community or agency where appropriate Disability or informal supports are not in place.
  • Unexpected, significant deterioration of disability-related functional capacity where appropriate Disability or informal supports are not in place.

I would argue that this has been me since July 2022, and things are only getting worse. I don’t fit easily into the NDIS’s two categories, which articulate if you are likely either likely to meet the requirement or likely to result in having a permanent impairment.

Although I have an ‘immediate risk to self, others, community or agency where appropriate disability or informal supports are not in place.’ I, for some reason, can not prove this to the NDIS.

My frustration is I have had my GP, Pain Specialist, Neurologist, Physio/s, Occupational Therapist, Rehabilitation Specialist, and Specialist/s Doctor of Occupational Therapy provide research-based reports/evidence on the permanency of my FND and chronic pain, all have written at-length stating I have a lifelong disability, with impairments that impact me every day. 

My specialists have all stated that I will likely permanently require assistance from the NDIS to effectively manage the impacts of my functional neurological disorder.

All these specialists have strongly recommended I access the NDIS Scheme. We have provided significant evidence through specialist reports articulating my function concerning good days (baseline) and bad days (flair-ups). 

Over the past 12 months, when I have been trying to access the NDIS scheme, these severe exacerbations can last up to 4 months. It is evidenced that approximately every 4 months (i.e. once rehabilitation supports as either inpatient or outpatient) I will return to the hospital (for 3-4 weeks of intensive rehabilitation, 7 days per week).

I continue to experience significant Disability, functional decline and significant evidenced impairment. 

I need assistance from the NDIS; I should not have to wait until I have severe exacerbations. 

It is a perpetual revolving door, a door that, frankly, I am pretty sick of spinning around in. The fact that I do not have the support of the NDIS means that I am stuck. I am stuck relying on a health system. One that I must wait until I am physically broken, bedbound and stuck to be able to access. Only then can I get the support that I need?

This is not a life. 

This is not a life.

I know my body; I can tell four-five weeks before I need to go to the hospital for extended rehabilitation.

This would not be needed if the NDIS funded the basics for me:

  1. Weekly Physio Therapy
  2. Weekly Hydro Therapy
  3. Fortnightly Occupational Therapy (OT)
  4. OT assessment for a wheelchair and other home-based equipment (ramps, bathroom mods, mobility aides etc.) 
  5. Funding for a customised Wheelchair
  6. Funding for help at home (meals, cleaning, lawns etc.)

During this past year, and to some extent the past seven years, I have been independently trying to manage my Disability, juggling full-time work and a family (including supporting a child with a disability) without any NDIS (or any external support).

I have been preparing my NDIS access request since June 2022 and applied in November 2022.

The frustration is that during the AAT process, I have not been listened to, the goalposts continue to change. I meet every request of the NDIS lawyer, I get the evidence and then I feel they look for another loophole, another reason to decline, or for me to source new information. There are always more questions. I jump through the hoop, and again more questions.

I don’t understand what they are looking for.

It feels like the NDIS does not want to support me. 

Instead, they want to find a way to exit me from the Scheme. 

I am desperate for the support of the NDIS and need this. 

I can never pay personally for the help I need; the rehabilitation alone when I am an outpatient is over $1000 per week.

I am grateful that I persevered to maintain our family’s private health insurance (about $7500 annually). 

If these supports were not in place, I would be stuffed. If I was not fortunate enough to have the funds to afford this care, I don’t want to imagine the what-ifs. 

I would be stuck at home with a disability that no one wants to accept as truth. (This is a partial truth now; however, my respite because of the ability to access rehabilitation makes the Disability bearable).  

I continue to experience significant functional decline and need to return to the hospital every 3-4 months. This a cycle that me and my family need to stop. This isn’t a life that I can enjoy, be free.

My week consists of driving to therapy and attending work one day per week (this exhausts me so much that I am wrecked for days afterwards). If lucky, I can drive with my family on weekends and maybe buy some groceries. However, each one of these events had risks. I fall or have near misses every day, we are all stressed, and most of the time lose the enjoyment of the activity due to my impairment and how much energy and brainpower it takes just to exit my car, walk to the entrance of a building, get my wheelchair out of my car.

My life consists of educated risks, fear, and anger towards people in the community who don’t see nor understand my impairment and struggle to do what they take for granted.

I went out today to a large supermarket (Westfields); nothing wrong with the facilities; however, the people, even with two family members besides me, walking with crutches, clearly unstable; I was invisible.

I feel unsafe exiting my home; my family must go with me everywhere to ensure I don’t fall over or be in danger. 

I don’t feel I am being heard, supported, or treated fairly because of my Disability.

I need to access the NDIS; however, it does not seem that that is interested in understanding why this is necessary.

Loss; Coming to Terms with a Permanent Disability.

2 Replies

If I’m being honest, I’ve been quiet these past few months (on social, blogs, and talking about progress, or lack thereof).

Writing has been too hard because life’s been hard.

I have been learning how to say YES—saying YES when my family ask if they can help me. Asking for help when I am stuck at work or the community. Saying YES when we need to change how we as a family travel and move around and access the city (our routines, activities, events, shopping etc.) It’s been a big adjustment.

I’ve also been working with my wife to say NO. I am learning the true meaning of rest and not jamming too much in my week, and ensuring that I maintain balance so I can enjoy the fun things or family time activities.

Historically I don’t take instructions well. I’m used to being in control and dictating my own story. It’s hard to be comfortable or at least accept the need to rely on others; this has been one of the most challenging but rewarding lessons.

Being honest with myself and putting it on paper makes the hurt real.

Having the head knowledge that I have had chronic pain for over 20 years and a neurological/physical disability since at least 2016; was a reality I was unprepared for.

I did not want to acknowledge that I am now/was living with a lifelong disability. (I know how ableist I sound right now.)

Over the past seven years, I have ‘got better,’ i.e., my function has improved about 3-6 months after a flair-up (with intensive physical therapy). However, the frequency has slowly gotten closer together.

Unfortunately, I have not ‘recovered’, meaning my functional capacity has only marginally improved after extended rehabilitation. I have been unable to mobilise without supervision when walking with aides more than 100-300 metres. This has been since August 2022, and my baseline means I am unsafe to mobilise in the community without support, even in a wheelchair.

As someone that finds it near impossible to sit/stand still, these last 12 months, I have felt ‘trapped’, have needed to ask my family for help, and needed to be honest with myself, that this new normal, although a reality I’ve seen before, is unlikely to improve.

I was highly embarrassed; I would not declare my disability when applying for jobs; when meeting new friends, I would explain, ‘I have sore legs.’ Explain away the limps, the grimace, and the bags full of painkillers and other medications when I travelled for work.

The struggle was I could not explain my disability to my extended family correctly, many assumptions were made, and it was too raw to continue the conversations. I just said, ‘I’m ok’, ‘it’s nothing’, ‘just a bit tight’, ‘my back hurts.’ Because those who were close didn’t fully understand the impact my disability had on my family and me, I feared talking to others, even my doctors, boss etc., at times.

I was also embarrassed because I could still work (I know, again, extremely ableist), earn an income, and provide for my family. In the narrowminded comments from my family/work, it was excused away, ‘Was it stress’, ‘Was it a show’ I was told I had these weird diseases, that I needed to ‘get my feminine organs checked’ etc. Due to medication, I put on weight, which was commented on. However, still, I was not comfortable sharing exactly what was going on (even if this was, I’m getting tests, we don’t know, it’s a work in progress.)

This negative feedback reinforced that it was all in my head; I was ‘faking’ or at least not as significant as the symptoms I was feeling or trying to hide away from.

Because I have never been honest with myself and those close (excluding my immediate family), I dismissed my disability; I’ve been waiting for my legs to magically return to my ‘normal’ (weird gait, look like JarJar Binks (Star Wars reference) but can ‘mask’ aka pretend between flare-ups that life is peachy, ‘I’m normal’.

Because of my negative experiences, I made assumptions that new workplaces, friends, and peers would not understand, so I kept quiet, made excuses, and brushed the comments away.

In 2023, I made a conscious decision, to be honest (really raw worts and all honest) with my employer, myself, and my family.

After many converations this year (connections with executives, risk team, WHS, and inclusion and acessabilty working groups). I felt I was able to be honest with myslef, I found that for the first time an organistion wanted to support me, and ensure there could be success. They bent over backwards to ensure I was confortable, had the tools for success at the workplace, hospital or home. They ensured that I was included, had a voice at the table, and a mechinisum to share feedback in a safeway, when areas are not accessabile.

Honestly, this acceptance from my workplace has done more for me psychologically than seven years of doctor’s appointments and complex specialist reports. There was an acknowledgement of my disability and a commitment to support the barriers I would face. However, this knowledge didn’t lessen who I was as a senior leader, peer, or boss.

Going beyond acceptance to inclusion has been one of my career highlights; I was finally able to be who I am, accept my disability, use equipment and aides to make my time at the office more comfortable, and have open communication around the balance I require. The balance between, working from the office, home, and the flexibility to attted medical appointments and therapy sessions.

Previously I would choose to work the 10-14 hour days excluding time for myself to recover or receive any proactive support such as therapy. I forced myself to work harder than my body enabled, without a solution or real plan on what to do when it no longer worked.

I am grateful to my family, who persistently drummed into me that I needed help, and I needed to allow them to help me. Without this, I wouldn’t have been comfortable conversing and being honest with my employer.

We still are at the beginning of being honest, getting the correct supports in place, and ensuring that I don’t lose the independence and function that I have. I have a simple goal (Hopefully with the NDIS) to receive maintenance support (hydro, physio, OT). Hopefully, with consistency, I will again see the distances between hospitalisation and rehab extend and be present more at home and at my workplace.