Help a Disabled Aboriginal Mum get URGENT Surgery

The Disability Justice Network (DJN) is urgently fundraising for a member of the Aboriginal disability community in need of critical surgery.

To protect this community member from further trauma and unwanted surveillance from the very systems denying them care, we are respecting their anonymity and will be referring to them only as Jane*.

Jane’s surgery is scheduled for November 6 2023 and at this point, every dollar counts.

Where the NDIS, Medicare and private health insurance systems have failed, we are calling on the community to help us raise the needed funds to support Jane to:

- Undergo the critical surgeries she requires,

- find accessible accommodation in Sydney during her recovery period, and

- keep her kids in her care and support the family through this highly stressful time.

Background on Jane’s* Disability and Medical Needs

Jane lives with Hypermobile Ehlers Danlos Syndrome (hEDS) and Craniocervical Instability (CCI). She is an NDIS participant and single parent, living on the Disability Support Pension (DSP).

Spinal surgery to alleviate Jane’s craniocervical instability (CCI) was first flagged and acted upon last year when they were referred to a specialist brain and spine neurosurgeon. This surgeon is the only medical professional in Australia providing care for people with CCI, and is Jane’s only shot at receiving medical intervention to improve their quality of life and help alleviate debilitating symptoms such as:

- Constant chronic neck and shoulder pain

- Neurogenic glaucoma

- Neurogenic gastroparetic episodes (Jane lost 1/3 of her body weight before stabilising)

- Neurogenic dysphagia (choking on foods and liquids, having them come out the nose)

- Neurogenic esophageal dysmotility and retrograde flow

- Tinnitus

- Constant pressure headaches

- Migraines

- Trigeminal neuralgia (burning and/or numbness across face/lips/eye/ear skin)

- Occipital neuralgia (extremely painful sporadic spurts of blasting firebolts running from base of skull to eye socket)

- Cognitive dysfunction (brain fog, emotional dysregulation, worsening of ADHD executive dysfunction, significant cognitive fatigue)

- Random altering of sensorial processing producing disturbances of taste, sight, sound, smell and touch

- Complete dual incontinence

- Vasovagal syncope (when your body’s normal ability to control blood pressure doesn’t work like it should, causing you to pass out)

- Dysautonomia (dysregulation of the autonomic nervous system causing Postural Orthostatic Tachycardia Syndrome, Orthostatic Intolerance, Post Prandial Hypoglycaemia and other cardio, respiratory and GI system dysfunction).

After being assessed by this specialist brain and spine surgeon last year, it was determined that Jane would benefit from surgical intervention. Unfortunately, this surgical intervention is a long and complicated process involving several surgeries and medical equipment trials.

The first step on this pathway for Jane was a hard-collar trial, which the NDIS agreed to fund. A hard-collar is a piece of non-surgical equipment the surgeon used to assess whether or not a surgical halo trial would benefit Jane.

The conclusion of the hard-collar trial was, unsurprisingly, that Jane will benefit from a halo brace trial. The purpose of trialling the halo brace, which is a piece of medical equipment requiring surgical insertion, is to allow the brain and spine surgeon determine if spinal fusion surgery (a far higher risk surgery) will ultimately benefit Jane.

Given the complexity of the surgical intervention involved, these trials are necessary to ensure Jane is getting the best care possible.

Jane is now currently awaiting halo trial surgery.

How Medicare and the NDIS have failed Jane*

Whilst Jane desperately needs her halo trial surgery, lack of help from both the public Medicare system and private health insurance systems has meant that Jane needs to self-fund both her halo trial surgery and any further needed surgeries herself (whilst living in poverty on the DSP).

The halo brace Jane will be fitted with used to be on the Pharmaceutical Benefits Scheme (PBS) until a few years ago, when it stopped being used as front line treatment for acute spinal trauma patients. Now, a halo brace costs close to $6,500AUD.

In total, the combined cost of these prospective surgeries, including the halo brace, is nearly $30,000AUD. Through sheer determination and grit, Jane has managed to save nearly $10,000AUD, but this is still nowhere near enough to cover the care that she needs.

Earlier in the year, Jane had a review of her plan with the NDIS to see if they would help fund supports during the halo trial, given they’d funded Jane’s hard-collar trial. In this review, Jane specifically asked for:

- more support hours to help her care for her children whilst recovering from surgery, given her mobility will be extremely restricted, and

- help to fund accommodation down in Sydney when Jane has the halo insertion surgery, given the brain and spinal surgeon Jane has been receiving care from operates in Sydney, NSW; thousands of kilometres away from where Jane lives.

In response to this review request, the NDIS not only refused to help Jane with accommodation, but callously made the decision to take away some of her allocated support worker funding.

Most distressingly, the NDIS threatened Jane – an Aboriginal woman who grew up in out-of-home care – with the removal of her neurodivergent children, claiming that if the loss of support hours posed the risk of her kids having to manage her disabilities, then “maybe it’s time she surrenders responsibility for them.”

Instead of helping Jane navigate this complex and critical situation, not only have the NDIS failed to provide support, but they have further perpetuated trauma for Jane and her family.

Throughout this entire battle, Jane has been facing harsher and newer co-morbidities as her nerves are being pinched in her neck and the insurance systems she's appealed to fail and threaten her.

In the face of repeated system failure and abuse, we are stepping in as a community to support Jane. If the systems meant to care for her will not, then we will.

Jane’s* Current Situation

Jane is currently booked in for her first surgery, the halo trial insertion, on November 6th.

One of Jane’s children is also due for knee reconstruction, which will stop their safe attendance at school, in late October - only weeks before Jane’s halo trial surgery. Jane’s child’s knee construction should have happened in March this year but given the knock-on effects from COVID on the public health system, has only just been scheduled.

Jane has begun to organise with the school methods of delivering her child's lessons out of the classroom. This will ease her need to find a sitter for them, as they will come to an accessible space in Sydney with Jane and her support workers. Jane’s other 2 children will be cared for by their other parent during this period.

Jane is still $30,000AUD short of what she needs to:

- undergo the critical surgeries she requires,

- find accessible accommodation in Sydney during her recovery period, and

- keep her kids in her care and support the family through this highly stressful time.

In the spirit of transparency, Jane and the DJN will record all funds spent. Any excess funds will be donated to the DJN's ongoing mutual aid fund and used to support other multiply-marginalised disabled people.

Please support us to provide Jane with these urgently needed funds and help her access the care she has for too long been denied.

In love & solidarity,

The Disability Justice Network