It has been approximately eight weeks since my NDIS plan was approved and approximately six weeks since services commenced. Last week was six weeks post-hospital discharge from rehabilitation
I am beyond grateful for the support. But it is an enormous task to work with your support coordinator, therapists, support workers and your family to start building a support team around you. After fighting to get the support that should have been offered three hospital stays ago, it is hard to be still and dwell on the significance of being provided disability funding
In the last 11 months,
- 3 (disabilty supports) rejections.
- 3 hospitalisations.
- Significant disruptions to my family and work.
- Depletion of any savings we had.
I should not have needed to FIGHT this much.
It took three reviews, complaints to multiple government organisations, and the need to engage with legal professionals to land where we were. Finally, I found a disability organisation that offered pro bono services to advocate and provide proactive support. This was 12-18 months of physical and metaphorical pain and pure hell. The delay of support nearly cost me my job. The delay meant I was not functioning at my best. Due to the impact of this delay, I let people down. It will take me some time to recover from 18-36 months of significant deterioration of my neurological disorder and chronic neuropathic pain. I struggle with the fact that I haven’t come to terms with accepting a permanent disability; I often forget the impact this change has had on my family and others.
I have had hundreds of people say congratulations.
Congratulations were hard words to swallow; I know it was well intended, but we should not celebrate when a fundamental human right took 18 months to eventuate. We shouldn’t congratulate because of the four years post diagnosis of support that could have been provided.
I don’t accept gaining support from the government (NDIS) as a victory or something to celebrate. We need to change the perspective; people with disabilities shouldn’t need to fight and live their worst lives before support is possible. People with disabilities should have access to support. We need to change our perspective from the NDIS looking for ways to discount and reject your application to looking for ways to support people with disabilities.
Yes, I am grateful!!
With my university degree, industry knowledge, and capacity to pay for private health and specialists, I come from a privilege. That, however, does not discount the need to ensure that my fundamental human rights are met. For context- from our Attorney General’s page
‘The Convention on the Rights of Persons with Disabilities (CRPD) recognises the barriers that people with a disability may face in realising their rights. The rights under all human rights treaties apply to everyone, including people with disability. However, the CRPD applies human rights specifically to the context of people with disability.
Back to the story, we developed a plan once I had steadied myself, started to prioritise my team, and understood my immediate needs, timelines for usual flair-ups, equipment back orders, etc.
I prioritised equipment orders as the number one task (wheelchair, bed, other household equipment); however, I needed an occupational therapist to help with the ‘prescription’ to trigger the ordering process.
The equipment will take several months to be delivered, so the next focus quickly went to maintaining my current functionality.
I had 4-6 hours per week of post-rehabilitation funded under my private health insurance, so I built a team around these supports to ensure continuity when the rehab supports cease six weeks after discharge.
Then I looked at lightening my load and working with my psychologist on pacing (learning to prioritise, rest, and slow down).
Pacing is a tool that helps you better understand your body and the impact of pain/neurological symptoms interact with your daily routine. This means trying to understand and develop safer ways that build in time for rest. I need to be proactive and learn to understand my limits. I hope to create better routines and then modify habits to ensure I’m not hitting my maximum and potentially risking a flair-up. It meant (still learning) being intentional in taking a break before you need to; with the help of my psychologist, we have been trying to operate at 85% on good and bad days.
So, I have been tracking my schedule and looking at ways to build in movement, rest, and recovery. The theory is that pacing could reduce the severity and duration of a flare-up/s, prolonging the return trip to rehab and giving more control/understanding over my disability.
Building supports has been positive, and the rest component has been forced welcomes, which has allowed me to set up services to ensure that post-rehab, I have a healthy routine that works around my regular work hours.
At times, I have had up to 24 hours of support per week, which has been challenging to get used to as a family.
- Rehabilitation x2 per week
- Personal Training/exercise & stretching
- Assistance around the house
- Assistance with meals
- And others (GP, OT, etc.)
The third phase was to accept a cook into the family home three nights per week.
This was the most challenging part to let go of. I love to cook and cook for my family; I’ve even got quite good if I do say myself. However, to ensure I could get through the week, I needed to let go of some of the things I loved to ensure I rested, recovered (read pace) and prolonged hospitalisation.
Part of the work with my psychologist has been to explore my community more and push past the fear that I have lived in the past 18 months. It’s easier for me to stay indoors, and we have been trying to move slowly and add new activities, and do something every day (short walk, shopping, walking at work, etc.) and do these activities where possible on good and bad days, and work on stanching the duration of the movement.
As I have been exploring my local surroundings, workplace, shopping centres and city centres, I have been frustrated by the lack of access, inclusion, and understanding/care for people with disabilities. I am invisible to people around me. I am often knocked over, run into, and have countless near misses because people are too busy to see a person in a wheelchair, walker, or crutches. (I am a big boy and walk with a walker, but I still need someone next to me to ensure I am safe in the community).
In my community, I have felt unsafe during most adventures outside. I have been pushed, barged, tripped, laughed at, ignored, misunderstood, undervalued, and not seen as a person of worth but one with limitations that are a burden.
A significant barrier is the inability to go to the toilet safely. I’ve been able to use an accessible toilet about three times over the last three months; these toilets and access corridors have been used as storage areas, used by members of the public who thought it was quicker than waiting in line for another toilet or not there at all.
I have noticed that, unfortunately, for the most part, people, businesses, local councils and building planners work toward a minimum standard rather than a best practice that will enable people with disabilities to access areas that many take for granted multiple times per day.
I’ve been learning about direct and indirect discrimination.
My definition of direct disability discrimination is when a person with a disability is treated less than someone without. This can occur and be measured in any situation, as I discussed accessibility around bathroom access if toilets are available. Still, I cannot use them due to the narrow doors, no locks, inability to manoeuvre in and out of the stalls, etc. It is equality –i.e., being treated the same as everyone else.
Indirect discrimination is harder to detect and is more common, in my opinion. An example from a workplace perspective could be a service provider putting conditions, practices, or rules in place that, on the surface, seems to treat everyone the same or ‘equal, but with a closer look, you see disadvantage because of their disability, there could be an inability to comply.
A simple example could be not allowing or providing provisions for people with religious beliefs to observe these beliefs and practices (i.e., time to pray and request specific days off).
More information can be found here: Disability discrimination.
The Federal Disability Discrimination Act 1992 (DDA) protects everyone in Australia against discrimination based on disability.
‘Disability discrimination happens when people with a disability are treated less fairly than people without a disability. Disability discrimination also occurs when people are treated less fairly because they are relatives, friends, carers, co-workers or associates of a person with a disability’.
I am in my eighth week of talking to a specialist pain psychologist about my disability.
It’s been hard talking about the why, how, and impact that my disability has and continues to have on my and my family’s lives.
It’s evident that my workplace injury in 1999, both a physical and traumatic event, was the start of my chronic pain and functional neurological disorder.
However, unpacking ever so slightly traumatic childhood events has also influenced my response to pain, stubborn drive to perfection, and deliberate stubbornness.
There is now a new fear that I am working with; I can juggle specialist appointments, therapy, support at home, work commitments, work on my physical health, and so on. That doesn’t take away the drive for perfection, the need to work for the next 25-30 years, and a body that wants to fight me all the way.
I’m not a quitter, and the drive that has been in my life from the age of eight (noting that this did come from a traumatic response) to help, lead, and ensure others are supported before me is who I am and my identity. However, I need to learn how to do this safely for the betterment of my family and myself, as I am here for the long haul, even though I will need support for the rest of my life to do so.