Luke’s story, told in the Sunday Herald Sun in 2009, revealed how the human spirit could be crushed by a stark state care system with little human contact or stimulus.
As one of Victoria’s most severely autistic people, Luke was the archetype of the case authorities left to wither in the too-hard basket. At 15, he was placed in state care where his violent outbursts and his complex way of processing the world left him languishing in prison-like conditions for 20 hours a day for six years.
But now after a year living free from the system, his parents, Mark and Ellen Modra, have a message for the Department of Human Services: by swapping restraint for care and punishment for understanding, the severely disabled can live happy and productive lives without families being destroyed and lives ruined.
Archive for February, 2011
The UK has come bottom of a league table comparing dementia care in European countries, with an average time lag of two years and eight months between signs of Alzheimer’s disease being suspected by carers, and the medical diagnosis being made.
Delays were more than twice as long in Britain as in Italy and Germany, and nine months longer than in Poland.
Ministers will highlight the failings this week as the Department of Health launches a radio and television campaign to encourage those who suspect dementia to see their doctor.
guest post from Carer Watch member , Pat Onions
The NHS 24 duty Doctor has just left and David is now asleep. Only 4 hours ago I was trying to give him some relief from the cramps. They are all over his body, making him scream and bang his head with pain. Begging me to make it go away or end it forever. The lovely Doctor gives him a pethadine injection to add to his daily morphine patches.
Pain, like babies being born, comes at night. For us, like so many, the Doctors know their way to our back door.
Now I sit quietly and cry while reality kicks in once again.
If, as a registered blind person, I am deemed fit for work…who looks after David? He is my eyes and I am his full time, unpaid, carer. His War Pension takes him over the threshold, only just, and we would have to pay huge amounts for care. Then of course they do not provide night care. My DLA helps to pay towards the exorbitant profits the gas company makes.
We try to live as independently as our disabilities allow but this threat hanging over me is making me ill too.
The promise of a ‘ Quality of life and independence’ will have the completely opposite effect.
Parents who care for adults with learning disabilities claim they will suffer “breakdowns” due to added pressure if day centre changes go ahead.
John Stanton, chairman of Friends of Carlton Day Centre, Sidcup, led a meeting on Monday concerning proposals to cut the amount of days their children can attend due to spending cuts.
About 30 parents attended the meeting, including his wife Jo, who cares for their son who has the brain condition Microcephaly and is partially sighted.
She said: “He would be very angry with us and the centre if the number of days he attends is reduced. It would be unbearable and breakdown is inevitable.
“We’re both pensioners and wouldn’t be able to cope with his needs.”
The NHS faces a “bed-blocking” crisis which could see half of wards being flooded with elderly people who should be in care homes, a report warns.
Figures estimate that if social care budgets are not ring-fenced, 81,000 care home beds will be lost over the next decade, leaving vulnerable people nowhere to go but hospital.
The pressure on the health service will be further compounded by the rapidly ageing population that will see an additional 18,000 older people needing care, the study warns.
This will leave 100,000 of the 170,000 NHS beds taken up by the elderly residents who should be in residential care, restricting the places to those who need them, according to the report by Bupa, the health insurance and care provider.
The study, entitled Who Cares? Funding Adult Social Care Over the Next Decade, urges the Government to ring-fence the £2 billion earmarked for adult social care so that councils do not use it to plug holes in other budgets. It also calls for councils to take into account care home inflation when setting budgets.
Telegraph – Intolerable bed blocking
Mirror – Care ‘could fuel NHS bed-blocking
Flaws in the government’s Health and Social Care Bill could threaten the confidentiality of patient records, doctors’ leaders have warned.
The British Medical Association says there are “serious concerns” about clauses in the bill on information sharing in a reshaped NHS.
The BMA says it fails to guarantee patients’ identities are kept secret.
But the government says the bill makes no changes to any of the existing legal safeguards on confidentiality.
The BMA, which fears that patients might withhold important information because of confidentiality issues, has written to Minister of State Simon Burns.
The government’s implementation of welfare reform is destroying the covenant of care between disabled people and the welfare state (Report, 23 February). The most vulnerable people in our country are being subjected to cruelty. The work capability assessment is not fit for purpose. It is denying employment support allowance to those whom the 2007 Welfare Reform Act deemed it not reasonable to require to work.
The assessment lacks public and medical accountability. Criteria about what constitutes an “illness” and a “disability” have been increasingly narrowed over the years into a set of descriptors that fail to recognise the complex problems and needs of those who are mentally ill, or who have intermittent illnesses or communicative conditions.
We want a system that is flexible and supportive of disabled people and which helps people into good, appropriate jobs with decent wages. One that values and supports those who are unable to work, and that insures us all against the misfortunes of illness and disability.
Jon Cruddas MP Labour, Dagenham & Rainham,
Neil Coyle Director of policy, Disability Alliance,
Anna Healy Labour, House of Lords,
Gavin Hayes General secretary, Compass,
Professor Jonathan Rutherford Middlesex University,
Professor Peter Beresford Brunel University,
Steve Griffiths Researcher and Consultant,
Rhydian Fôn James The Broken of Britain,
Frances Kelly, Rosemary O’Neill Carerwatch,
Alison Wiles, Anna Kennedy, Carole Rutherford co-founders, Act Now – Autism Campaigners Together
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Posted in Autism, benefits, Carers, Disabled, elderly, health, mental health, pensions, social care, welfare reform | 1 Comment »
With thanks to Rhydian Fon James and all members at The Broken of Britain
The Social Security Advisory Committee has echoed The Broken of Britain’s concerns about the reform of Disability Living Allowance. The statutory body is questioning the motives for the proposed replacement of DLA with the Personal Independence Payment. This line of attack originated with The Broken of Britain and CarerWatch. The committee is also opposing outright the separate move to withdraw DLA entitlement from people living in care homes.
The reasoning for the reforms has been The Broken of Britain’s main line of attack on DLA reform over the consultation period, and the SSAC say that it is “concerned that the aim of reducing the number of working-age claimants of DLA by 20% appears to be driving the need for reform of the benefit”. The committee wants “some clarity” on the aims of the reform. The SSAC also echo The Broken of Britain by pointing out that research for the Department for Work and Pensions, published last summer, found conclusively that DLA made “a real difference” in assisting disabled people to manage their daily lives and contribute to society.
This is further major embarrassment for the Government, and for Maria Miller in particular, and gives The Broken of Britain some ammunition to fight DLA reform as presented in the Welfare Reform Bill. The Coalition is still reeling from Amelia Gentleman’s expose of ESA, and other humiliations. The Broken of Britain fully intends to keep the pressure up.
Failing to support unpaid family carers will destroy the foundation of our society as a whole.
January edition of Open Mind includes this article from Carer Watch.
Note : this was submitted Dec 2010 prior to some of the welfare proposals being known