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

 

[gamiry]

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.

 

[gamiry]

they aren't "people" they are Parasites.

 

[gamiry]

For some strange reason, I took you as a male. Outspoken and proud of it, like me.

LOL People take me for a male on the phone because I've always called my voice "My Manly Ferry Foghorn". I keep seeing you reference Dandenong. I do wish I could get there because I've bought my bulbs from Tesselaars for about 40 years. I was told that tulips wouldn't grow in QLD and I said WATCH ME and did. I also grew them in Gordon near Ballarat. Please Veg never change. About time I got some breakfast. I've only been in here since 6am

 

[DrivingGirl]

Your post makes my blood boil. Strange how charlatans can get away with anything and everything, but those with legitimate claims are made to jump through a thousand loops, do countless cartwheels and suck their own toes. @mylittletibbies Honestly I've had enough of this crap! 0

Desperately unfair- and open to gross corruption so there are no funds for people who really need it

 

[windyweather]

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

yes well the mention of insurance rings bells immediately. --Typically insurance companies will do all it takes to avoid their responsibilities.
it`s high time for the Government to make insurance companies accountable.

 

[Veggiepatch]

LOL People take me for a male on the phone because I've always called my voice "My Manly Ferry Foghorn". I keep seeing you reference Dandenong. I do wish I could get there because I've bought my bulbs from Tesselaars for about 40 years. I was told that tulips wouldn't grow in QLD and I said WATCH ME and did. I also grew them in Gordon near Ballarat. Please Veg never change. About time I got some breakfast. I've only been in here since 6am

Don't come to Dandenong unless I accompany you. The snakes here are the lowest of the low. And the males here are intimidated by me. Don't know why? Unless my past has covertly followed me to Melbourne.

 

[gamiry]

My daughter is under the NDIS as she was born with an intellectual disability. Recently the NDIS requested an OT report, I believe in the hope of reducing her supports.
This backfired when the assessor recommended quite a lot of additional supports, due to the effects from three bouts of oral cancer, such as speech therapy and several other supports which had been refused as b eing not related to her original disability.
Now I have recently received a letter stating her plan will roll over again for another year, no reductions but also no extra supports even though they were recommended by the OT report they had requested.
Still, I am grateful for the support we do receive as I realise many people receive nothing.
I, along with most people I know believe that the NDIS has been a schamozzle, open to so many rorts.
We were better off under the previous Disability Supports Dept.
Also the govt should have kept their noses out of the supported workshop system.
Politicians who really have no knowledge of living with a person with disabilities decides that these workshops don't pay enough
They don't realise that they loved working there, feeling that they had a job like other people, they looked forward to going there where they made friends, were accepted, etc
The money was irrelevant, they had their pensions.
Now these workshops are closed down because they couldn't compete once the wages were forced to be raised and their workers couldn't work at a fast enough rate to make the workshops viable any longer.
Why do goody two shoes people, who have no idea, stick their nose into things that are working well and completely ruin things for those they profess to be helping??

I suggest you do what I did and send all you've got to all State and Federal Pollies AND newspapers. That kicked up a hell of a stink but got the powers that be moving.

Don't come to Dandenong unless I accompany you. The snakes here are the lowest of the low. And the males here are intimidated by me. Don't know why? Unless my past has covertly followed me to Melbourne.

sounds wonderful. I have lived on the land with red bellies, large scale snakes and a couple of others both good or bad but, who knows, they may think I'm too old and tough to worry about. LOL. After the Bundy floods I took little dog I had for a walk and thought I saw an odd shaped stick....no stick. It was a taipan. Any wonder I live alone.

 

[gamiry]

w

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

who writes these guidelines? Obviously people with degrees, no brains, not old enough to know the facts outside of books but knowledge of how to rip off govt money

 

[Veggiepatch]

I suggest you do what I did and send all you've got to all State and Federal Pollies AND newspapers. That kicked up a hell of a stink but got the powers that be moving.

sounds wonderful. I have lived on the land with red bellies, large scale snakes and a couple of others both good or bad but, who knows, they may think I'm too old and tough to worry about. LOL. After the Bundy floods I took little dog I had for a walk and thought I saw an odd shaped stick....no stick. It was a taipan. Any wonder I live alone.

Wow! I endured the Burnett River flooding in 2010 and 2011. Living in Avoca, one of the western most suburbs and highest elevated, I had water views from my backyard from a river that was usually two kilometres away. Just a couple of hundred metres away back then!

 

[gamiry]

For some strange reason, I took you as a male. Outspoken and proud of it, like me.

I'm certainly like you Veg. Makes me wonder where you hail from.

 

[Veggiepatch]

I'm certainly like you Veg. Makes me wonder where you hail from.

I don't "hail" from the sky. My feet are on Terra Firma!

 

[gamiry]

Wow! I endured the Burnett River flooding in 2010 and 2011. Living in Avoca, one of the western most suburbs and highest elevated, I had water views from my backyard from a river that was usually two kilometres away. Just a couple of hundred metres away back then!

I was sitting on my side verandah watching the water come up over the paddocks at Sth Kolan. I came here from Vic and you went the other way. Luckily the house was high enough for the water to go underneath. Sugarland sure has changed since then.

 

[gamiry]

I don't "hail" from the sky. My feet are on Terra Firma!

SMARTIE !!!! LOL GOOD NIGHT ALL. I'm off to have a ham salad for dinner followed by apricots and icecream. SWEET DREAMS TO ALL.

 

[AlanQ]

DSP is the support provided by taxpayers, NDIS has an age cut off. This story is sad, but it's an illness not a disability.

 

[AlanQ]

He's not been 'refused' he's not eligible. It's not a bottomless bucket of money available for this program. $55billion & counting, the second biggest budget item.

 

[Smithsd]

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 worked in the disability sector for many years in a government department as a psychologist. I know that this is pedantics, but there is a significant difference between a disability and a disabling condition. When I went out on assessment meetings for children, I was accompanied by either an OT, a Speechie, or a Physiotherapist. What I, as a psychologist, deemed a disability, was often overruled, especially by OT's because it was not disabling. The defining characteristic was that the child could still live a fulfilling life just that (for instance) they could not kick a ball to play soccer.
Fast forward to the introduction of the NDIS, in Queensland at least, the Department of Disabilities, as part of the overall Department of Communities was quickly disbanded and the Queensland government no longer provided any support.
So, what we have now is no support for people with a disabling condition because it is not lifelong, it is life limiting. These people used to be covered, at least in Queensland, by the Department of Communities Disability Services.

Also, just think about other life limiting conditions that are not covered. Coeliac Disease, Haemochromatosis, Type 1 and 2 Diabetes, the list is endless.
I am well aware of people who are ripping off the current system and I am also well aware of services that are also ripping off the current system.

 

[Veggiepatch]

SMARTIE !!!! LOL GOOD NIGHT ALL. I'm off to have a ham salad for dinner followed by apricots and icecream. SWEET DREAMS TO ALL.

Good night to you too!

 

[Ellev]

Because the whole NDIS system is sham! Seriously look at all the small companies that have just opened up in the last couple of years that don't pay properly and charge a fortune to their clients. working as a care provider for the last 25 years I've seen some real doozies happen but nothing like the last couple of years of these small companies opening up and taking advantage to make a buck. People desperately in need getting nothing if you guys think the supermarkets are bad you need to take note of what goes on in this industry.

 

[Veggiepatch]

I was sitting on my side verandah watching the water come up over the paddocks at Sth Kolan. I came here from Vic and you went the other way. Luckily the house was high enough for the water to go underneath. Sugarland sure has changed since then.

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.

 

[Cheezil]

i'm fed up to the back teeth with know-all, do gooders who know sweet bugger all about what people want or need. I'm too old for NDIS but, as is written, people with such diseases like MDS and Parkinsons are treated with total disrespect. I once asked about assisted dieing, not to do immediately but through interest and was told I'd never be able to access this as I'm not serious enough. Well with kidney disease from age 8 , having had 4 different cancers, no leg use or balance they can go to hell. I know many will go on at me but when I'm ready I will and can put an end to this myself. A few sleeping pills will do the trick. My will has been done, my funeral paid since 2009 and haven't seen family for many years so they can all go to hell. Forgot to say I have PTSD and very little left of my spine through many years of damned hard work and family disease of Osteoporosis AND my brain works fine die to doing 3 games twice a day for memory and observation. Thankfully I don't have family curses of diabetes and dementia.

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!