The Times Australia
The Times World News

.
The Times Real Estate

.

Brain tumours can bring long-term disability – but some diagnosed are being refused NDIS support

  • Written by Kathy Boschen, Research Associate, Casual Academic, PhD Candidate, Flinders University
Brain tumours can bring long-term disability – but some diagnosed are being refused NDIS support

The ABC is reporting[1] how terminally ill patients are being left in limbo as the states and the National Disability Insurance Scheme (NDIS) argue over disability supports. The reports share the experiences of Australians with brain tumours and highlight the distress of getting a diagnosis, as well as the lack of support people can experience[2].

Those living with what is at once a serious illness, disability and a potentially life-limiting condition can be caught between[3] the NDIS, the health system and palliative care. A review of the NDIS[4] is due to be released soon, following a year of investigations into eligibility, sustainability and how costs and supports should be split between the NDIS and the states.

How can we support people better and make sure they don’t fall between the gaps?

Read more: The NDIS promises lifelong support – but what about end-of-life support for people with disability?[5]

Brain tumours may not be a death knell

About 1,900 Australians[6] are diagnosed with brain tumours each year.

Around 22% of those diagnosed survive beyond five years[7]. And some 68% of people[8] aged 20 to 39 have at least a five-year relative survival rate after a brain cancer diagnosis.

Brain tumours and their treatments can cause substantial disability[9]. This may include paralysis (often hemiplegia, which is when one side of the body is affected), cognitive and sensory changes, seizures and mental health conditions.

People may therefore need substantial support to communicate, travel outside of the home, socialise and interact with others, or take care of their daily needs.

Read more: Brain tumors are cognitive parasites – how brain cancer hijacks neural circuits and causes cognitive decline[10]

Brain tumours and the NDIS

The NDIS is meant to support people with disability[11] up to the age of 65 and beyond if they are already participants of the scheme. But some Australians diagnosed with brain tumours say they are being denied access to the scheme[12]. Others report having their NDIS funding cut[13].

People with brain tumours have had their requests for support denied. In some cases, the decisions have been overturned on appeal.

To meet the disability requirements of the NDIS Act[14] a person must have an impairment that is likely permanent and requires lifelong support. The National Disability Insurance Agency (NDIA), which administers the scheme, uses the Applied Principles and Tables of Support[15] to assess eligibility under the scheme or whether another government department should be responsible.

These decisions can cause considerable frustration and distress for patients, families, advocacy groups, palliative care clinicians and NDIS providers. The NDIS Operational Guidelines[16] state:

It doesn’t matter what caused your impairment, for example if you’ve had it from birth, or acquired it from an injury, accident or health condition.

But without clear guidelines to spell out what functional supports are provided by each system, it is difficult to determine how the NDIA makes access and planning decisions.

Brain tumours are often life-limiting, but other life-limiting conditions that impact a person’s function are listed as likely to meet the disability requirements. These conditions include[17] Patau syndrome[18], Leigh syndrome[19] and Canavan disease[20], motor neurone disease[21] and Parkinson’s disease.

What functional supports can health systems or palliative care provide?

Many people confuse[22] palliative care with end-of-life care. When people are referred to palliative care or their medical practitioners adopt a palliative approach to care, they often feel it means they are at the end of their lives. Although palliative care means there will be no further curative treatment for a condition, patients may live for months or years after referral.

The kinds of support Australians receive from palliative care vary widely across the country, particularly in rural and remote areas. Services can help manage clinical symptoms of illnesses such as pain, breathlessness or fatigue. They can also provide some mental health support.

Functional supports such as personal care, domestic assistance, respite, food services or equipment, are usually only provided by palliative care services and some charities as end-of-life care.

People over 65 might be able to access functional support via the aged-care system. If a person under 65 can’t access the NDIS, they may find little or no functional support available until their final weeks of life.

Read more: What actually is palliative care? And how is it different to end-of-life care?[23]

A call for clarity and guidance

People with life-limiting illnesses, including those featured in the ABC reports[24], are calling for increased clarity and guidance. Which public health systems are responsible for helping with functional supports? How can they get the support they need to avoid admission to hospital, hospice or residential aged care?

The high costs associated[25] with prolonged hospital stays mean the economic case for helping people to stay at home for as long as possible is strong. But these costs don’t consider the emotional toll that disjointed and chaotic processes can have on patients and families impacted by brain tumours or other life-limiting conditions.

References

  1. ^ is reporting (www.abc.net.au)
  2. ^ people can experience (www.abc.net.au)
  3. ^ between (theconversation.com)
  4. ^ review of the NDIS (www.ndisreview.gov.au)
  5. ^ The NDIS promises lifelong support – but what about end-of-life support for people with disability? (theconversation.com)
  6. ^ 1,900 Australians (www.canceraustralia.gov.au)
  7. ^ 22% of those diagnosed survive beyond five years (curebraincancer.org.au)
  8. ^ 68% of people (www.aihw.gov.au)
  9. ^ substantial disability (pubmed.ncbi.nlm.nih.gov)
  10. ^ Brain tumors are cognitive parasites – how brain cancer hijacks neural circuits and causes cognitive decline (theconversation.com)
  11. ^ support people with disability (www5.austlii.edu.au)
  12. ^ access to the scheme (www.abc.net.au)
  13. ^ NDIS funding cut (www.abc.net.au)
  14. ^ NDIS Act (www5.austlii.edu.au)
  15. ^ Applied Principles and Tables of Support (www.dss.gov.au)
  16. ^ NDIS Operational Guidelines (ourguidelines.ndis.gov.au)
  17. ^ include (ourguidelines.ndis.gov.au)
  18. ^ Patau syndrome (www.betterhealth.vic.gov.au)
  19. ^ Leigh syndrome (www.ninds.nih.gov)
  20. ^ Canavan disease (www.ninds.nih.gov)
  21. ^ motor neurone disease (ourguidelines.ndis.gov.au)
  22. ^ confuse (theconversation.com)
  23. ^ What actually is palliative care? And how is it different to end-of-life care? (theconversation.com)
  24. ^ ABC reports (www.abc.net.au)
  25. ^ high costs associated (onlinelibrary.wiley.com)

Read more https://theconversation.com/brain-tumours-can-bring-long-term-disability-but-some-diagnosed-are-being-refused-ndis-support-216534

The Times Features

Itinerary to Maximize Your Two-Week Adventure in Vietnam and Cambodia

Two weeks may not seem like much, but it’s just the right time for travelers to explore the best of Vietnam and Cambodia. From the bustling streets of Hanoi to the magnificent te...

How to Protect Your Garden Trees from Wind Damage in Australia

In Australia's expansive landscape, garden trees hold noteworthy significance. They not only enhance the aesthetic appeal of our homes but also play an integral role in the local...

Brisbane Homeowners Warned: Non-Compliant Flexible Hoses Pose High Flood Risk

As a homeowner in Brisbane, when you think of the potential for flood damage to your home, you probably think of weather events. But you should know that there may be a tickin...

Argan Oil-Infused Moroccanoil Shampoo: Nourish and Revitalize Your Hair

Are you ready to transform your hair from dull and lifeless to vibrant and full of life? Look no further than the luxurious embrace of Argan Oil-Infused Moroccanoil Shampoo! In a...

Building A Strong Foundation For Any Structure

Building a home or commercial building can be very exciting. The possibilities are endless and the future is interesting. You can always change aspects of the building to meet the ...

The Role of a Family Dentist: Why Every Household Needs One

source A family dentist isn’t like your regular dentist who may specialise in a particular age group and whom you visit only when something goes wrong. A family dentist takes proa...

Times Magazine

"Eternal Nurture" by Cara Barilla: A Timeless Collection of Wisdom and Healing

Renowned Sydney-born author and educator Cara Barilla has released her latest book, Eternal Nurture, a profound collection of inspirational quotes designed to support mindfulness, emotional healing, and personal growth. With a deep commitment to ...

How AI-Driven SEO Enhancements Can Improve Headless CMS Content Visibility

Whereas SEO (search engine optimization) is critical in the digital landscape for making connections to content, much of it is still done manually keyword research, metatags, final tweaks at publication requiring a human element that takes extensiv...

Crypto Expert John Fenga Reveals How Blockchain is Revolutionising Charity

One of the most persistent challenges in the charity sector is trust. Donors often wonder whether their contributions are being used effectively or if overhead costs consume a significant portion. Traditional fundraising methods can be opaque, with...

Navigating Parenting Arrangements in Australia: A Legal Guide for Parents

Understanding Parenting Arrangements in Australia. Child custody disputes are often one of the most emotionally charged aspects of separation or divorce. Parents naturally want what is best for their children, but the legal process of determining ...

Blocky Adventures: A Minecraft Movie Celebration for Your Wrist

The Minecraft movie is almost here—and it’s time to get excited! With the film set to hit theaters on April 4, 2025, fans have a brand-new reason to celebrate. To honor the upcoming blockbuster, watchfaces.co has released a special Minecraft-inspir...

The Ultimate Guide to Apple Watch Faces & Trending Wallpapers

In today’s digital world, personalization is everything. Your smartwatch isn’t just a timepiece—it’s an extension of your style. Thanks to innovative third-party developers, customizing your Apple Watch has reached new heights with stunning designs...

LayBy Shopping