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

 

[Lynstar007]

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

 

[Petra]

WoW ... that is sad. I know people who aren't even sick, who gets NDIS, like my 40 year old neighbour. She is on welfare payments, NDIS and lives like a queen. There is nothing, zero, wrong with her. She plays cricket, rides her bike, etc. she told me she has PTSD ...

 

[steve.bryce]

a lot of other people also fall between the cracks in the ndis system.
i am a disability pension holder.
i have lupus, and severl other secondary conditions.
i also suffer lumber spondylosis. (a bad back)

both military and centrelink tables put me on 100% disability.
where is the logic ....... where is the help?

 

[Veggiepatch]

WTF! I only read the first few lines of the article and knew where it was headed. Totally disgusting is putting it mildly.

Coming from an strict advocate for persons with a disability.

 

[gamiry]

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 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.

 

[Veggiepatch]

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.

Sorry to hear it my friend! Best wishes.

 

[mylittletibbies]

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??

 

[mylittletibbies]

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 am so sorry to hear of your many problems. Life has certainly dealt you a bad hand.
It is so sad that you have no family support.
I wish you all the best.

 

[gamiry]

Sorry to hear it my friend! Best wishes.

thank you Vegie and bless you. I love to read what you say because you usually make so much sense. Happy New Year my wonderful FRIEND.

 

[Veggiepatch]

thank you Vegie and bless you. I love to read what you say because you usually make so much sense. Happy New Year my wonderful FRIEND.

I'd give you a big hug!

But people might think I'm gay....

 

[gamiry]

I am so sorry to hear of your many problems. Life has certainly dealt you a bad hand.
It is so sad that you have no family support.
I wish you all the best.,

No it wasn't meant to be a whinge just statement of fact. Born with club feet I learned to deal with and accept whatever life handed me. You all mean family to me. Thank you all. May you all have a happy and safe New Year.

 

[Veggiepatch]

No it wasn't meant to be a whinge just statement of fact. Born with club feet I learned to deal with and accept whatever life handed me. You all mean family to me. Thank you all. May you all have a happy and safe New Year.

Fight the good fight, my friend!

 

[gamiry]

I'd give you a big hug!

But people might think I'm gay....

I accept with love. I 've been called GAY by my eldest son because I shared a house with a lady I worked with. I've had many lovely friends over the years who were GAY and it was worse when said son was told by me that I worked at an Adult Shop. That of course made me a prostitute. Now you all know why I don't see my kids, grandkids and ggrandkids. Judged wrongly by the Court of the Family. Some may question why I worked in that shop. It was to get enough money to feed the recovering druggies and drunks I took in.

 

[Granny*Deb]

I will be 66 I in January and the words used sine May last year are, what do you expect. I have Parkinson's Disease that is on the march. I'm scared crazy,I don't want tens of thousands of dollars I want help to retain a little dignity. I was told my medical team will know when I'm ready for extended care. Guess that's as I'm dying

 

[Veggiepatch]

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??

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

 

[Liz]

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.

Good luck to you Gamiry.

 

[Liz]

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.

 

[Veggiepatch]

I accept with love. I 've been called GAY by my eldest son because I shared a house with a lady I worked with. I've had many lovely friends over the years who were GAY and it was worse when said son was told by me that I worked at an Adult Shop. That of course made me a prostitute. Now you all know why I don't see my kids, grandkids and ggrandkids. Judged wrongly by the Court of the Family. Some may question why I worked in that shop. It was to get enough money to feed the recovering druggies and drunks I took in.

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

 

[gamiry]

I will be 66 I in January and the words used sine May last year are, what do you expect. I have Parkinson's Disease that is on the march. I'm scared crazy,I don't want tens of thousands of dollars I want help to retain a little dignity. I was told my medical team will know when I'm ready for extended care. Guess that's as I'm dying

If you haven't already got involved with MY Aged Care do so then contact a provider called Five Good Friends. You'd be surprised just how much difference they can make. I've had my beautiful friend for almost 6 years. Danni is like a daughter to me, company, shopping, outings including a meal, all once a week and today I've finally given in to have a lady to do some cleaning. I'm almost 82 and always done everything myself (Mum said I was pigheaded and stubborn). LOL....Please take each day with the thought that HURRAY I'm still alive and find your beautiful smile. Good luck, you have so many friends in here.