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

The ABC is reporting 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.

Those living with what is at once a serious illness, disability and a potentially life-limiting condition can be caught between the NDIS, the health system and palliative care. A review of the NDISis 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?



Brain tumours may not be a death knell​

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

Around 22% of those diagnosed survive beyond five years. And some 68% of people 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. 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.



Brain tumours and the NDIS​

The NDIS is meant to support people with disability 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. Others report having their NDIS funding cut.


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 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 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 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 Patau syndrome, Leigh syndrome and Canavan disease, motor neurone disease and Parkinson’s disease.



What functional supports can health systems or palliative care provide?​

Many people confuse 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.



A call for clarity and guidance​

People with life-limiting illnesses, including those featured in the ABC reports, 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 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.

This article was first published on The Conversation, and was written by, Kathy Boschen, Research Associate, Casual Academic, PhD Candidate, Flinders University, Caroline Phelan, Lecturer, Flinders University

 
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I know a 40 year old male who is getting NDIS and is milking it for all its worth. Gets 3 support workers a day and they take and do everything for him. He is not physically disabled but the workers clean his place and even take the rubbish up to the bin. If you ask him to help around our complex his answer is "I don't do that". What a wasted life and wasted tax payers money. I feel for the genuine people who cannot get help under the NDIS. I think they need to take a long hard look at the scheme, and yes I know they have, but there are quite a few people in my opinion who are rorting the system and they need to weed them out.
I think everyone of us knows someone like that! It's not our call to judge who is more eligible than who (I'm no doctor) but wouldn't it be good if the dodgey non deserving were cut off & the genuine ones who aren't getting any assistance at all got the dodgey ones benefits!
 
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I feel the same re ending things in the event of serious health trauma (family history of dementia or a stroke, etc) when there are no other options & no family that would bother looking after me (& I dont expect them to either after going thru what I went thru with my dad & his dementia), What else can we do?
Govt certainly dont care!
oh how well I hear you. My Mum had 6 siblings. She and baby sister were the only ones without dementia (all died in the same home)) Baby sister died at 39 with brain tumor and Mum at 62 with stroke, heart and sugar. My father made her life miserable. I swore that once I got rid of my husband (DV) I would do things differently. Hence I have got everything in place for when I"M ready. Gov't and all do gooders can all go to hell.
 
I lived at South Kolan for a few months. Couldn't go to the local pub because that pesky creek was flooded! We had to go to Gin Gin instead....the long way.
that's certainly a LONG way round to get to the pub. I couldn't get out of my street, Ruths Road, for 3 weeks. Luckily I had full freezer, fridge and cupboards so never went hungry.
I keep getting a gut feeling we actually know each other. I was at Sth Kolan for around 15 years. Wish I was still there.
HAVE A GREAT DAY MY FRIEND AND PLEASE STAY SAFE.
 
that's certainly a LONG way round to get to the pub. I couldn't get out of my street, Ruths Road, for 3 weeks. Luckily I had full freezer, fridge and cupboards so never went hungry.
I keep getting a gut feeling we actually know each other. I was at Sth Kolan for around 15 years. Wish I was still there.
HAVE A GREAT DAY MY FRIEND AND PLEASE STAY SAFE.
I lived in Rosella Drive which is off Keoghs Road, for a few months.
 
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I lived in Rosella Drive which is off Keoghs Road, for a few months.
AND I think you went to Shalom markets. I do know those two roads. Don't worry about anything with me. I was Bundy's first JP In The Community working in Sugarland and the Court House. Everything with me must be honest and can't abide BS
 
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AND I think you went to Shalom markets. I do know those two roads. Don't worry about anything with me. I was Bundy's first JP In The Community working in Sugarland and the Court House. Everything with me must be honest and can't abide BS
Reading your posts here today has been very uplifting for me & l would suggest other members too. You are a real battler, been through so much crap & yet you can smile about it. I admire you & your persistence. Thankyou for sharing your thoughts.
 
I don't know how the Government can be so INSENSITIVE to people's needs.

Are those people who reject claims too scared to say yes in case they are seen to be doing the right thing to help those in the system who desperately need extra care.

I wonder what would happen if the shoe were on the other foot for Politicians or other decision makers? What would their reaction be if they were suddenly on the other side of the fence needing that assistance?

The funds come from the pockets of taxpayers which are held "in trust" for want of a better term, by the Federal Government.

Time the Government Departments stop playing games, puts a foot down & gives the Public a HOT LINE so they can advise them of any person they BELIEVE is rorting the system [l hate the words dob in].

Too many people are rorting the system now that honest people are being denied their honestly earnt & deserved benefits. ONE BAD APPLE DOES SPOIL THE BUNCH!
 
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Reading your posts here today has been very uplifting for me & l would suggest other members too. You are a real battler, been through so much crap & yet you can smile about it. I admire you & your persistence. Thankyou for sharing your thoughts.
this is the first time in many years I've spoken so much to so many beautiful people. Thank youEzzy

I expect people will jump down my throat for what I'm about to say but 2 days before the Qld ex-Premier jumped ship she was waffling on about how she would still hold office after the 2032 Olympics. I got so mad I told her her greed disgusted me and she should consider all the people who were hungry and homeless, aged and disabled through no fault of their own. I said " I respectfully suggest that you invest in a coffin". Two days later she was gone. I also predicted that the next one to go was Bundaberg's Mayor who won't even give the people, especially the old and disabled, footpaths and decent road edges. After that it could be Albo if he doesn't stop globe trotting and show some care about the people who gave him his job and pay packet. Vegiepatch is quite right when he said I was like him "loud and proud". I'm not known for keeping my mouth shut when something needs to be said.
 
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AND I think you went to Shalom markets. I do know those two roads. Don't worry about anything with me. I was Bundy's first JP In The Community working in Sugarland and the Court House. Everything with me must be honest and can't abide BS
Vegie, a thought while resting..I wonder how many times we passed each other's street while on Birthamba Road.
Oh hell the bloody storm is here again. 3.45pm and black as the ace of spades.
 
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this is the first time in many years I've spoken so much to so many beautiful people. Thank youEzzy

I expect people will jump down my throat for what I'm about to say but 2 days before the Qld ex-Premier jumped ship she was waffling on about how she would still hold office after the 2032 Olympics. I got so mad I told her her greed disgusted me and she should consider all the people who were hungry and homeless, aged and disabled through no fault of their own. I said " I respectfully suggest that you invest in a coffin". Two days later she was gone. I also predicted that the next one to go was Bundaberg's Mayor who won't even give the people, especially the old and disabled, footpaths and decent road edges. After that it could be Albo if he doesn't stop globe trotting and show some care about the people who gave him his job and pay packet. Vegiepatch is quite right when he said I was like him "loud and proud". I'm not known for keeping my mouth shut when something needs to be said.
Again you have my vote. Like your style gamiry. Please, just keep keeping on as you are. Enjoy reading your comments here.
 
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The ABC is reporting 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.

Those living with what is at once a serious illness, disability and a potentially life-limiting condition can be caught between the NDIS, the health system and palliative care. A review of the NDISis 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?



Brain tumours may not be a death knell​

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

Around 22% of those diagnosed survive beyond five years. And some 68% of people 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. 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.



Brain tumours and the NDIS​

The NDIS is meant to support people with disability 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. Others report having their NDIS funding cut.


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 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 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 state:


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 Patau syndrome, Leigh syndrome and Canavan disease, motor neurone disease and Parkinson’s disease.



What functional supports can health systems or palliative care provide?​

Many people confuse 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.



A call for clarity and guidance​

People with life-limiting illnesses, including those featured in the ABC reports, 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 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.

This article was first published on The Conversation, and was written by, Kathy Boschen, Research Associate, Casual Academic, PhD Candidate, Flinders University, Caroline Phelan, Lecturer, Flinders University


I'm being treated for brain tumours, and am only receiving treatment through Medicare in the publc health system. Just the latest i the on going saga of the dreaded lurgy, still as they say March or Die?
 
I'm being treated for brain tumours, and am only receiving treatment through Medicare in the publc health system. Just the latest i the on going saga of the dreaded lurgy, still as they say March or Die?
Sorry to hear about your tumour my friend. Hope the treatment you are receiving is as good or better than if you were a private patient.
 
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AND I think you went to Shalom markets. I do know those two roads. Don't worry about anything with me. I was Bundy's first JP In The Community working in Sugarland and the Court House. Everything with me must be honest and can't abide BS
Went to Shalom Markets on Sunday as it was the only day it was open. And Bundy Courthouse. Went there many a time.... for all the wrong reasons. You must have been sitting at the table near the entrance if you were the JP. There was also a male JP there back in the early 2010s. Nice fella! Is Jennifer Batts still the magistrate?
 
Went to Shalom Markets on Sunday as it was the only day it was open. And Bundy Courthouse. Went there many a time.... for all the wrong reasons. You must have been sitting at the table near the entrance if you were the JP. There was also a male JP there back in the early 2010s. Nice fella! Is Jennifer Batts still the magistrate?
how wonderful..I always knew we would cross paths again. Miracles do happen.
I haven't been to the Court House since I spent a fortune on the Maynard Street house and as a thank you my beloved owner son took ME to Court and had me evicted and homeless then sold it. I was also in the room upstairs at the Court and JP signing day is still Wednesday at Sugarland. The lovely man was Clive Johnson who went back to NSW after his father died then Clive went with cancer. I don't know who the Magistrate is these days because The News Mail closed down and there is only one paper on Fridays now. I'm pretty sure I know who you are and would love to talk to you again. Is it possible to get my details to you if you want them? As for the markets I worked on many stalls including Rita's flowers and Ivan's herbs and palms. Bless you Veg you've made my day and my new year ahead.
I'M OFF FOR TEA SO GOOD NIGHT ALL , PLEASE SAFE, HAVE A GREAT NIGHT AND PLEASE BE BACK TOMORROW.
 
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I'm being treated for brain tumours, and am only receiving treatment through Medicare in the publc health system. Just the latest i the on going saga of the dreaded lurgy, still as they say March or Die?
I agree my friend..NEVER GIVE UP. Even 4 different cancers couldn't kill me. Maybe because I don't have "can't" in my dictionary and I'm damned if I'll give in. Bless you and never lose the smile. xx
 
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how wonderful..I always knew we would cross paths again. Miracles do happen.
I haven't been to the Court House since I spent a fortune on the Maynard Street house and as a thank you my beloved owner son took ME to Court and had me evicted and homeless then sold it. I was also in the room upstairs at the Court and JP signing day is still Wednesday at Sugarland. The lovely man was Clive Johnson who went back to NSW after his father died then Clive went with cancer. I don't know who the Magistrate is these days because The News Mail closed down and there is only one paper on Fridays now. I'm pretty sure I know who you are and would love to talk to you again. Is it possible to get my details to you if you want them? As for the markets I worked on many stalls including Rita's flowers and Ivan's herbs and palms. Bless you Veg you've made my day and my new year ahead.
I'M OFF FOR TEA SO GOOD NIGHT ALL , PLEASE SAFE, HAVE A GREAT NIGHT AND PLEASE BE BACK TOMORROW.
I am pleased for you both, finding so much in common & finding out on this site.
I too believe in miracles & that these things happen for a reason & possibly started
with you both coming on the SDC site. Happy New Year dear friend.
 
I am pleased for you both, finding so much in common & finding out on this site.
I too believe in miracles & that these things happen for a reason & possibly started
with you both coming on the SDC site. Happy New Year dear friend.
I certainly believe in miracles. I have a helper lady who I crossed paths with for about 25 years before we actually came together. I've now had Danni for around 6 years and I love her dearly. I even know her family and they are all very special to me. I also believe that Vegepatch is also a lovely man I'd love to see again. Danni put me into Facebook but I didn't like it. This room is the only one I have and it makes me really happy. THANK YOU
 
I certainly believe in miracles. I have a helper lady who I crossed paths with for about 25 years before we actually came together. I've now had Danni for around 6 years and I love her dearly. I even know her family and they are all very special to me. I also believe that Vegepatch is also a lovely man I'd love to see again. Danni put me into Facebook but I didn't like it. This room is the only one I have and it makes me really happy. THANK YOU
You certainly have a Guardian Angel watching over you.
 

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