govt support for people with disability - a rant

The nature of support for people with physical and cognitive disabilities will vary enormously from country to country...the UK and OZ have systems in the midst of reform

Australia's is the National Disability Insurance Scheme...all political parties have signed up to the notion..

a mate of mine (M aged 57) had an undiagnosed blot clot on his spine...complications have left him as a paraplegic....he could have died but survived (from other health issues at the time clot activated)

....he is a big guy 90 kilos plus and his partner is diminutive...their house in the Melb suburbs is not well designed for wheelchair access...

...after a couple of months in an acute care hospital he was transferred to a rehab facility where he has lived for this past 10 months...there is nothing wrong with his brain...he simply cannot walk and requires assistance with showering and dressing...he still has a job and has been doing work over the net a couple of days per week.

he was too young for a disability package - the govt weights priority to younger people and he is too young for an aged care package...finally his specialist blackmailed govts by plonking him back into an acute bed (cost - several $k per day) and kept him there until a package was arranged..

the package he obtained entitles him to an average of 3 hours per day support to live at home plus meeting the costs of some minor renos in the house...the full cost of the package will be $80K+ pa....if he lives another 20 years that will cost around $1.6M in 2013 dollars

...in the meantime he will continue to work 2-3 days a week for maybe another 5 years...when he comes in to work for meetings it will be by return subsidised taxi (best part of another $3000pa)...as he will work half time he will pick up some residual disability pension plus all the medical benefits and others attached to having a disability pension (maybe another $5000pa)....his partner will receive a level of disability carers benefit for supporting him if it limits her potential to work full time - add another $2-3000pa..

though provision of this support my mate will be able to live at home with his partner and work his 2-3 days a week and earn maybe $50K...the oncosts to his employer are considerable beyond payroll tax workers comp etc- a work station has been redesigned and minor works for a wheelchair accessible gents toilet.

even tho my friend is a capable worker - at best I would calculate the value of his production at around $90k pa and I doubt he will work longer than 5 years

The NDIS mandates such packages for all with assessed disbillities who are under 65 - at 65 they transfer to the aged care system..

the disability and human rights sectors have long pushed for these sorts of packages and support to enable people with disabilities to reach their maximum potential as human beings - inc in the workplace.

My friend is an outlier who is skilled and will continue to make a contribution at work...perhaps a majority of those who will get the bells and whistles NDIS are incapable of work...they will cost more

I do not believe the numbers put out by the Oz government...they are a gross underestimate of costs...opposing the NDIS is akin to spitting in church when it comes to popularity...but I think there needs to be a solid debate about the merits of heroic medicine keeping profoundly disabled people alive - be these prem bubs with multiple disabilities or people with severe acquired injuries - particularly those injuries that leave enduring brain injury

horace wrote:I do not believe the numbers put out by the Oz government...they are a gross underestimate of costs...

A fair and reasonable rant, h.

And the bit I have quoted is par for the course from the Vulture and the Goose.

If the ICU's withdrew support from everyone that looked like they MIGHT have or even most likely would have a bad brain injury or paraplegia, quite a few folk who seem perfectly OK now would not be here at all. The same goes for NICUs and premature babies ... it can be surprisingly hard to predict which ones will turn out perfectly OK, and which ones will not.

In the area of predicting neurological outcomes, as with most things ... between the obvious black and white extremes there are vast expanses of grey, which only reveal their true colour over time.

sadly S everyone has signed up to the numbers - because the productivity commission did the work up

we will never find the number of people prepared to perform the work as care workers

it is difficult to come to terms with giving a whole pile of people the equivalent of a serioous Lotto win....inc some people with an intellectual disability who may be prone to violent outbursts or be sexually disinhibited or require 2 people with them during daylight hours to ensure they dont offend or eat RD's sock - these folk cost $100's of K's pa and would not know whether they live in institutional care, the Hilton hotel , public housing or the third ring of Saturn

perhaps we could backload them to Indonesia and Sri Lanka on the people smuggling boats

lardbucket wrote:If the ICU's and withdrew support from everyone that looked like they MIGHT have or even most likely would have a bad brain injury or paraplegia, quite a few folk who seem perfectly OK now would not be here at all. The same goes for NICUs and premature babies ... it can be surprisingly hard to predict which ones will turn out perfectly OK, and which ones will not.

In the area of predicting neurological outcomes, as with most things ... between the obvious black and white extremes there are vast expanses of grey, which only reveal their true colour over time.

yep...no argument...predictability is difficult....yet those who survive with noggin scrambled cost immense emotional suffering, family breakdown, let alone $ cost...as you would, I know quite a few otherwise healthy young people with brains scrambled...they will live another 60 years plus - to what end....their parents never get to grieve!!!!

I do not think it is good enough for medicine to save lives with Tom Waterhouse odds in mind about who will be fine and who will be stuffed...I do not think we should invest in the technologies for prem bubs and maybe other technologies....pennies over the eyes for the River Styxx instead

embee wrote:perhaps we could backload them to Indonesia and Sri Lanka on the people smuggling boats

embee....I would rather see investments of $10k pa to 10 poor kids in SL or BigBali than $100k pa to a person who is in a vegetative state

I was thinking we could outsource the care for the vegies and save on transport at the same time ...

Instead of swapping asylum seekers with the Malaysians we could give them DisabiltyCare patients for vetted reffos

The Vegged for the Vetted Solution

When are you standing in your local Fed seat, A?

skully wrote:When are you standing in your local Fed seat, A?

He's waiting for Gina to launch the Disunited Australia Party.

Is there any betting on whether or not Bodyline has already joined Clive Palmer's party?

horace wrote:

lardbucket wrote:If the ICU's and withdrew support from everyone that looked like they MIGHT have or even most likely would have a bad brain injury or paraplegia, quite a few folk who seem perfectly OK now would not be here at all. The same goes for NICUs and premature babies ... it can be surprisingly hard to predict which ones will turn out perfectly OK, and which ones will not.

In the area of predicting neurological outcomes, as with most things ... between the obvious black and white extremes there are vast expanses of grey, which only reveal their true colour over time.

yep...no argument...predictability is difficult....yet those who survive with noggin scrambled cost immense emotional suffering, family breakdown, let alone $ cost...as you would, I know quite a few otherwise healthy young people with brains scrambled...they will live another 60 years plus - to what end....their parents never get to grieve!!!!

I do not think it is good enough for medicine to save lives with Tom Waterhouse odds in mind about who will be fine and who will be stuffed...I do not think we should invest in the technologies for prem bubs and maybe other technologies....pennies over the eyes for the River Styxx instead

If we'd followed your 'logic', though, horrie ... you'd never have seen the improvements in neonatal survival such that most '24 weekers' now, and prem babies of 750 grams most often survive and thrive, such that most are indistinguishable from the full termers. Not to mention the MVA victims destined for full recovery that you'd be turning off in fear of prolonging the survival of a very very few who remain in a persistent vegetative state ... it's a myth that they are out there in their thousands, and you know it. Every one of them is a tragedy but for every one of those, there are a good number of amazingly favourable outcomes. I think your view is jaundiced by the highly selected sample you see.

possibly....tho I read somewhere that the numbers of people with an Acquired Brain Injury are now significantly greater than the numbers of people with a congenital cognitive disability...it is not simply people in a vegetative state but also those with frontal lobe damage who have behavioural issues sometimes arising from loss of impulse control.

I also think you are a little optimistic about the health outcomes for neo nate outcomes....2500 grams is still the standard marker used in public health

horace wrote:possibly....tho I read somewhere that the numbers of people with an Acquired Brain Injury are now significantly greater than the numbers of people with a congenital cognitive disability...it is not simply people in a vegetative state but also those with frontal lobe damage who have behavioural issues sometimes arising from loss of impulse control.

I also think you are a little optimistic about the health outcomes for neo nate outcomes....2500 grams is still the standard marker used in public health

Oh dear.

horace wrote:possibly....tho I read somewhere that the numbers of people with an Acquired Brain Injury are now significantly greater than the numbers of people with a congenital cognitive disability

partly because neonatal outcomes have improved, and are still improving ... see the recent data on cooling of newborns of dubious peri-partum oxygenation, with improving neurological outcomes; and partly because some injured folk survive where they would not have survived before (this is a natural outcome if there is also improvement in outcomes for those who would have been more badly injured in the past, but doing better now)

...it is not simply people in a vegetative state but also those with frontal lobe damage who have behavioural issues sometimes arising from loss of impulse control.

but most of them don't even seem to have sustained an obvious injury at any time, they're just born barking

I also think you are a little optimistic about the health outcomes for neo nate outcomes....2500 grams is still the standard marker used in public health

2500 is better than 1500 is better than 1000 but even 750 is now survivable on occasions, with apparently normal end outcomes, with progression to university education and productivity or (if you prefer) to Trade Union membership

Seems topical for this thread. I hope it doesnt get transferred to the obit thread:

Judith Durham Brain hemorrhage

I wonder if it was a result of that bad car stack she was in some years ago.

for horrie:

Long-term developmental outcomes of low birth weight infants.
Hack M, Klein NK, Taylor HG.

Source

Department of Pediatrics, School of Medicine, Case Western Reserve University, USA.

Abstract

Advances in neonatal medicine have resulted in the increased survival of infants at lower and lower birth weight. While these medical success stories highlight the power of medical technology to save many of the tiniest infants at birth, serious questions remain about how these infants will develop and whether they will have normal, productive lives. Low birth weight children can be born at term or before term and have varying degrees of social and medical risk. Because low birth weight children are not a homogeneous group, they have a broad spectrum of growth, health, and developmental outcomes. While the vast majority of low birth weight children have normal outcomes, as a group they generally have higher rates of subnormal growth, illnesses, and neurodevelopmental problems. These problems increase as the child's birth weight decreases. With the exception of a small minority of low birth weight children with mental retardation and/or cerebral palsy, the developmental sequelae for most low birth weight infants include mild problems in cognition, attention, and neuromotor functioning. Long-term follow-up studies conducted on children born in the 1960s indicated that the adverse consequences of being born low birth weight were still apparent in adolescence. Adverse sociodemographic factors negatively affect developmental outcomes across the continuum of low birth weight and appear to have far greater effects on long-term cognitive outcomes than most of the biological risk factors. In addition, the cognitive defects associated with social or environmental risks become more pronounced as the child ages. Enrichment programs for low birth weight children seem to be most effective for the moderately low birth weight child who comes from a lower socioeconomic group. Continued research and attempts to decrease the rate of low birth weight and associated perinatal medical sequelae are of primary importance. Ongoing documentation of the long-term outcome of low birth weight children needs to be mandated, as does the implementation of environmental enrichment programs to help ameliorate the long-term consequences for infants who are born low birth weight.

PMID: 7543353 [PubMed - indexed for MEDLINE]

... and outcomes have improved since the publication of this article in 1995, and since many of those children (born in the 1960s) were studied

I think we can afford to be and should be kinder than the Spartans.

hmmnn...saw that too...ABC says she is communicating well so it looks pretty good

and Lardy
"but most of them don't even seem to have sustained an obvious injury at any time, they're just born barking"

true in some cases not in others...have had a bit to do with folk who have had an ABI -from trauma and alc/drugs....their family and friends all recognised behavioural change - mostly adverse (anger/loss of ability to concentrate etc)

but you wouldn't withdraw support from ALL the injured in order to prevent this happening to a small proportion ... that's just barking, too

horace wrote:hmmnn...saw that too...ABC says she is communicating well so it looks pretty good

carnival not over then in your opinion? ... she could end up being a bit frontal ...

woof

not all...but I think you underestimate the numbers left with enduring disability

I doubt it ... I think your views are coloured because you only see that sample

I am quite familiar with long-term ICU and stroke survivor data; there are very few 'vegetables' (ICU producing multitudes of 'vegetables' amongst its survivors is a media concoction; these events are remarkably tragic when they occur, but they are rare)

What's your view on Hawking, an equally remarkable individual? Who should judge quality of life?

obviously at an individual level...but other than that hard data and ultimately history

Hard data should judge quality of life?

Surely the individual should be able to judge his own quality of life; I am concerned that we are moving towards a situation where society and/or powerful individuals wish to judge the quality of life of others for them, possibly by their own standards.

not what I am suggesting...don't take it to the union yet