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An Angry and Upset Disabled and Neurodivergent: Tackling National Disability Insurance Scheme (NDIS) Applications and Rejections

  • Writer: Brooke Tahir
    Brooke Tahir
  • May 16
  • 11 min read

Brooke Tahir


I'm not going to write this blog article in my typical informative writing format. Instead, I am going to show you the pain that many of us experience when trying to navigate the Australian National Disability Insurance Scheme (NDIS).

The NDIS website claims, "The NDIS provides funding to eligible people with disability to gain more time with family and friends, greater independence, access to new skills, jobs, or volunteering in their community, and an improved quality of life. The NDIS also connects anyone with disability to services in their community. This includes connections to doctors, community groups, sporting clubs, support groups, libraries and schools, as well as providing information about what support is provided by each state and territory government."

I'd like to honestly unravel this and tell you about the reality of how someone diagnosed with a disability tackles the NDIS.


"The NDIS provides funding to eligible people with a disability":

Please, NDIS, tell me what "eligible" means to you, because what I hear is that you are funding fewer and fewer people with permanent physical disabilities. It seems you are focusing more on cases that are easier for your scheme to handle, such as mental health. Now, I understand that NDIS does not cover medical costs. However, if most of my issues are medical and my allied health is "all that could now help me" and not covered by other schemes, insurances, or funding for the needs of support, why wouldn’t you cover me?

It took me four attempts to gain successful access to the NDIS, and even then, I received very limited funding. We ended up having to apply under my ASD and ADHD diagnoses, which means I now have limited support and not the correct support required for my permanent disabilities. Instead, I am covered for ASD and ADHD- ironically, the two conditions I can manage the best out of all my disabilities!


"Gaining more time with family and friends, greater independence, access to new skills, jobs or volunteering in their community, and an improved quality of life."

I first applied around six years-or-so ago, when I was diagnosed with lifelong epilepsy secondary to an inoperable brain tumour in my temporal lobe. At that time, I was also dealing with permanent and lifelong Addison’s Disease (adrenal failure), fibromyalgia, Postural Orthostatic Tachycardia Syndrome (POTs) and PTSD.

This combination of conditions together can be fatal and was apparently too much for the NDIS to handle, as my application was rejected due to “wrong wording”.

At the time, I lived four hours away from my disabled mother, my only support, however, given she's also disabled she couldn't care for me. I had a one-year-old daughter and a husband working full-time to cover daily expenses for our household and children, as well as my medical needs. We had no other support, which left me frequently in and out of the public hospital due to further illness (often stress-induced). Ironically, the public hospital system was likely spending more on my care than the NDIS would have on a support worker.

I lost my independence and my “real” happy-go-lucky attitude when my body could no longer handle the stress, any other person could. I lost friends, I had no family nearby, and became severely depressed. My quality of life was terrible. Despite having a small daughter to care for, I couldn’t find joy in life. I was operating on medication alone.

The very people who were supposed to help me from the minute my Neurosurgeon/ Neurologist told me I had a lifelong brain tumour with secondary epilepsy because they couldn't remove the tumour. This element to me could turn terminal at any point, it could grow from being stable, who knows... the point is that it was life long and so was the Epilepsy.


"You have an intellectual, cognitive, neurological, sensory, physical or psychosocial disability that is fully diagnosed, treated/medicated and permanent, impacting your every day."


NDIS, I’m here to call you out on what feels like “your lies” to our community.

How hard is it to differentiate between those who truly need help and those who don’t? My disabilities are not my fault: my brain tumour cannot be removed, my adrenal glands are unpredictable, and my heart disease remains untreated because no medications work for me. These are permanent conditions, yet I met rejection after rejection. Was this due to eligibility, wording, or complexity, I wonder?

My impairments significantly affect my life, and asking for help is supposed to be a strength. I asked for help so many times and was repeatedly turned down. Without private health care or a solid support system, my mental health deteriorated with each rejection letter. Years passed before I was finally approved, leaving me feeling defeated and hopeless.

I sent a thick pile full of evidence including scans, appointments, referral letters, patient notes, doctors NDIS forms filled and more. The last time I did my application I had already given up, I felt beaten down. My life was becoming out of control, I hadn't been able to clean my bathroom properly in a year because I couldn't squat down and then stand up without the dizziness and vertigo that came with it. I started feeling like a failed mother. I felt anger towards some others being provided help for something I also had, yet I had that and more, the anger only came from resentment towards the NDIS.

Who else has been rejected because of “wording”, I bet there are many! The main things was that they discharged someone from hospital who could barely walk, home with a husband working full-time unable to care full-time and back to caring for her little baby without any help and this went on for five long years.


"Focus on Functional Impairment"

Instead of focusing on a diagnosis, the NDIS should prioritise functional assessments. Many people lack the resources to secure a clear diagnosis but are still significantly impaired. Cultural and socioeconomic factors must also be considered. In many cultures, disability may be visible and symptomatic, yet doctors' opinions can be disregarded due to family shame, hierarchy, or religious beliefs. The NDIS needs to become more inclusive and considerate.


"Application After Application"

The third time, the council got in contact with me and said they want to re-do it because it should have been approved.... a few months later, surprise! It wasn't. The fourth time a community outreach worker from an Aboriginal community centre helped me to get everything organised, the papers done and doctors letters finalised because by this time I had given up.

 I don't think doctors like filling out these letters at all, bulk-billing doctors are already under immense stress and then need to fill out these NDIS forms. By making them do these, errors are being made. I have visibly seen my doctor write out a completely wrong diagnosis for me before I corrected her, she then said "whoops wrong person".

At the end with the help of Aboriginal community centre, and after many years, I put in my last NDIS application. I asked my worker what diagnosis she was putting down, and she said “ASD and ADHD”, I thought WHY!? This I could handle, it's the rest I couldn't... I realised that it was the only thing they couldn't argue with, and this would give me at least some of the support I needed. I am thankful for my NDIS package now.

The process, well, the process has scared me for life and I wouldn't wish the feelings of imposter syndrome, hopelessness, loneliness, depression, rejection, or feeling like you just don't matter enough, upon anyone. The NDIS made me feel like a broken human that wasn't deserving of the very help that they advertised they help.

Some of the material things I need for my physical and mental health t help me recover also probably won't be accessible with a $300 consumables budget. However, all-in-all, I need to remember I really was only approved for my ASD, anything I needed like an iPad to help accessiblity at home and work is still out of the question.


"The Mental Consequences of Repeat NDIS Rejection"

NDIS also needs to see the people and stop JUST looking at the papers, there are too many people taunting this system and taking away from those who require it. I hope my very overdue package helps me, but first I have to catch up and heal from the many years I was left to care for myself and my babies at the same time with no assistance.

Times when I had to literally drag myself up the stairs, listen to my child cry from across the room untill I could safely stand to walk to pick them up without passing out, try and cook dinner whilst having severe vertigo and suffering from horrid headaches whilst shedding tears myself from the pain, crying from back pain from the two slipped discs in my back whilst trying to carry my children around. I of course had to pick them up when they cry and just to bend over whilst having severe pain that wasn't responsive to any pain relief that wouldn't put me to sleep.

 This doesn't mean I can't be a mother either, I am capable, this just means I needed support. This effected my releationship with my children through me feeling depressed, unworthy and hopeless as a mother, when really, I had an unaviodable disabilty that my government promises help for (being eligible), but wouldn't offer support when it came to it.

 Even after the nine of my different specialists, that all asked WHY I wasn't on NDIS and I felt seen it as my fault for giving up trying.

Why do we have to be so persistent and try and try with an agency we were destined to fail with?

The nights I couldn't sleep for discomfort but still go to work the next day to pay out of pocket for a cleaner to do what I can't or, becoming so stressed and unable to cope from all of that, that my finances run out of control because I forget what bill cycle I'm at or just can't face the "responsibilty" of finances.

 I wouldn't have suffered so much, just like thousands of others if the very program that is supposed to support the Australian disabled communty seen us as people instead of numbers and laid down supports where needed to avoid people losing out on what they needed, whether it be a package or not.

These are all places I wouldn't need to be healing from after five years if I would have had that support earlier.


Brooke's Recommendations for Improvement

  1. Simplify the Process: Break it down into manageable steps. Include a team of NDIS medical professionals to work with applicants' doctors, ensuring fairer application outcomes.

  2. Create a Referral System: For those denied a package, provide referrals to community supports, council cleaning services, and other resources. Establish a sister agency for cases needing irregular support.

  3. Partner with Hospitals: Support patients at home to reduce strain on public hospitals. Many emergency room visits could be avoided with adequate home support. By NDIS possibly becoming partners of certain hospitals, perhaps the patients could be supported at home instead of taking up critical care beds, waiting rooms etc for those people whom regulary present at the hospitals in need of support.

  4. Focus on Functional Impairment Instead of the Disability: Some people don't have a clear diagnosis (at least a clear one any way). For cases like mine where it is complex it a Funtonal Assessment should be focused on before the diagnosis list.

  5. Equity, Diversity and Inclusion within Disability: The NDIS has to consider things like culture, socioeconomic background, access to healthcare, isolation etc. Perhaps having your own doctors to do assessments would help!

  6. The NDIS needs to become more inclusive than it is.


"In the Media"

 In 2022, there was a 400% increase in appeals alone, many of these cases like mine are leavng parents of older children still being 24 hour carers for their children and becoming chrnically burnt out from it.

 Lives are lost by desperate applicants or patients that should have a plan from being either underfunded, rejected when in need or from suicide from the rejection of needed support. There were over 4.4 million disaled Australans in 2022 yet only 12% (518,000) were on the NDIS. People over 65 already aren't eligable and people suffereing from rare or invisible illnesses can have great difficulty proving their disabilities in order to meet the NDIS criteria.

Many people in this population surveyed by the ABC said "the NDIS process is made so complex and onerous that it can dissuade people from applying in the first place." The ABC (2022) also wrote "To fit the eligibility criteria, NDIS applicants need to prove a number of things, including that their disability is caused by an impairment, that the impairment is likely to be permanent, and that the impairment reduces their capacity to perform everyday tasks, work, study or take part in social life.

 Other notable quotes from this article are: "It's actually expensive to have a disability", "It's actually expensive to have a disability", "The Coalition abandoned 'Tier 2' framework from the get-go, which has left tens of thousands of people without any kind of supports".

From another article by Billshorten.com.au (2020) it was written: How many Australians with disability have to die in their homes before Stuart Robert - the man the Prime Minister has put in charge of our national disability scheme – admits there is a problem?

Mr Robert has so far presided over:

• $4.6b being ripped out of the NDIS

 • 1200 Australians with disability dying while waiting to be funded by the scheme

• A refusal to launch an independent inquiry into system failures that led to Ms Smith’s death After her brother David’s lonely death, Leanne Longfellow asked one thing of Mr Robert – that case managers be introduced to the NDIS.

He wrote back saying there were no plans to do that.

The Minister needs to get real and start acting in the interests of Australians with disability. Australians pay their taxes so that when they are vulnerable they are not left to die in squalor.

Please NDIS, start thinking of us smaller people, our families and our quality of life as if we were your family.


"A Message To Readers And A Message To NDIS"


When the government says that the NDIS is there for the people who need, I (to the NDIS) say "Yes, very selectively, within your budget, if it won't cost you too much, if the application has the right wording and the conditions aren't complex then you might help, otherwise keep trying until you check all the boxes, until then struggle".

To you (reader) I say: "The process is hard, life can be harder, you know that life can be harder, I don't need to tell you that so keep trying and make your voice heard. Go and see an NDIS specialist at a community centre, council or VACCA/ DHHS agency. The issue is that you do matter, and you do need help, support and an improvement in your quality of life. We know that."

 In the meantime, the NDIS needs to realise the side effects their system is having on people in need. NDIS also needs to see the people and stop JUST looking at the papers, there are too many people taunting this system and taking away from those who require it.


Conclusion

Now, I have an ASD/ADHD-specific NDIS package, which provides home and social support. But first, I need to heal from the years I spent struggling alone. The pain of dragging myself up stairs, hearing my baby cry while I was too weak to move, and enduring unrelenting pain—all while the NDIS turned its back on me—has left scars. I am thankful for my current package, but the journey to get here was dehumanising and exhausting.

To the government: when you promise to support Australians with disabilities, ensure your actions match your words. Simplify the system, focus on people, and provide meaningful support to those in need. Until then, many of us will continue to fight, not only for assistance but also for recognition of our humanity.


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