Disabled People: Independent Living
Question
By Lord Ashley of Stoke
To ask Her Majesty’s Government whether they intend to bring forward proposals for independent living for disabled persons.
Baroness Thornton: My Lords, the Government have made progress with a number of proposals to assist independent living for disabled people. These include the common assessment framework for adults; the fairer contribution guidance, which will be published soon; regulations to allow direct payments to be made to adults lacking capacity, from autumn 2009; ratification of the United Nations convention for disability rights on 9 June; and the soon-to-be-published Care and Support Green Paper.
Lord Ashley of Stoke: My Lords, I thank my noble friend for that very helpful reply, but would she agree that the Government and supporters of my independent living Bill may be in conflict, because the Government want to go slower and we want to go faster in our approach? Would my noble friend and the rest of the Government consider a compromise proposal, whereby the Government enact the Bill now but then take time in implementing it—say, over two years? That would be a beginning of a breakdown of the stances on both sides.
Baroness Thornton: My Lords, my noble friend is very tempting. I commend him for his passion and determination to drive progress on the very important issues of independent living and equality for disabled people. As I have already said, this Government continue to make real progress on this. I have listed some of the key actions that we have delivered since we discussed my noble friend’s Bill in March. The Government’s programme of action is making a real difference and will continue to do so. The work that we are doing and leading on, together with the Equality Bill being discussed in the other place, means that many of the goals that we all desire can be delivered without the need to enact my noble friend’s Bill.
asked the Government to look into giving the winter fuel allowance to people of whatever age who are in receipt of full care allowance.
Baroness Thornton: My Lords, the noble Baroness makes a useful point. I will take it up with my noble friend in the DWP and get back to her.
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Long-awaited plans for a radical new approach to funding the care of older and disabled people are being held up by a Whitehall row over fears that the proposals will be portrayed as a £10bn raid on benefits claimed by 4 million people.
The plans, billed one of the "big ideas" for a Labour fourth term, are due to be set out as options in a green paper that has been postponed repeatedly. The launch was expected finally on Tuesday of this week, but was again put off with no explanation.
Ministers promised that the green paper would appear in "the spring", but are now running out of time before the summer parliamentary recess starts on 21 July and the Norwich North by-election two days later.
Recriminations are flying between government departments over the handling of the issue. The Department of Health, which has led the development of the green paper, stands accused of getting policy and politics badly out of line and of failing to spot the potential for deep controversy. Health ministers say they have always made it clear that the document would set out tough choices.
The June government reshuffle has compounded matters in that the health secretary, Andy Burnham, and work and pensions secretary, Yvette Cooper, who is understood to have been blocking publication, are both new in post.
The green paper is intended to kick-start a debate on how to provide, and pay for, the care and support of the rapidly growing population of older people and the swelling numbers of younger people with disabilities. One aim is to try to stop people having to sell their homes to fund residential care.
Options believed to be in the paper include a social insurance levy on people in work or a means-tested, one-off payment of perhaps £12,000 – ideas that, as speculation, have already sparked criticism in the rightwing press.
There is mounting concern at how such proposals would play if unveiled formally ahead of a crucial by-election. But Cooper and her officials are more worried by a further option of converting two existing benefits, together worth some £10bn a year and paid irrespective of personal means, into discretionary social care grants.
The two benefits are attendance allowance (AA), paid to 1.6 million people aged 65 or over at an annual cost of £4.4bn, and the care component of disability living allowance (DLA), paid largely to about 2.5 million younger people with disabilities at a cost of at least £6bn.
Both benefits are designed to help people who need assistance with daily domestic life and are paid at either £47.10 or £70.35 a week, or in the case of DLA, also £18.65. The cash is not supposed to pay for professional help, but for some of the extra living costs associated with being disabled.
Critics say that the benefits are poorly targeted, because they are not means-tested and depend on people making a claim; that there is a lack of hard evidence that the money is spent as intended; and that the system duplicates the social care assessment and grant process run by local authorities.
The green paper, which would apply to England in the first instance, is thought to suggest transferring the £6bn cost over time to local government, increasing by almost 50% the funds available to councils to pay grants to people assessed as needing care but lacking the means to pay for it themselves.
In a previous document, The Case for Change, ministers said last year that the benefits "might be part of a new care and support system", but "any changes that may emerge will not affect existing benefit recipients".
Charities and lobby groups for older and disabled people have been keeping their powder dry. But experienced ministers and officials have bitter memories of demonstrations against disability benefit changes in Labour's first term, when wheelchair users chained themselves to the Downing Street gates, doused in red paint.
Age Concern and Help the Aged, the newly merged charity for older people, says AA provides a flexible, national entitlement that promotes independence and choice irrespective of personal means. Any new system must retain such elements.
"It is not a fortune, but it can make a huge difference to someone's life," a spokesman for the charity said.
Liz Sayce, the chief executive of disability charity Radar, said: "The real importance of DLA, and why it is popular, is that it covers the extra costs of disability and you know where you are with it because you are assessed on the basis of national entitlement criteria and it is portable: you can take it with you if you move and not worry that local authorities have different local criteria."
There is dismay among some health department officials that Burnham has proved unable to force publication of the green paper. They say the options contained within it should have come as no surprise to Cooper, who ought to have been familiar with them in her previous role as chief secretary to the Treasury. In that role, she signed up to The Case for Change.
Gordon Brown had been expected to front the launch of the document, had it gone ahead this week, but the continuing wrangling in Whitehall makes his involvement increasingly doubtful.
http://www.guardian.co.uk/society/2009/jul/08/green-paper-elderly-disabl...
A disabled peer, who needs a ventilator to help her breathe at night, was heard in silence today when she made an impassioned speech against changing the law to assist euthanasia.
Lady Campbell of Surbiton said suicide reform would lead to "state sanctioned assisted dying" in which doctors would encourage people with disabilities to end their lives.
Campbell, born with spinal muscular atrophy, was speaking out against an attempt by Lord Falconer, the former lord chancellor, to relax the law on assisted dying. His amendment to the coroners and justice bill, which would allow people to help someone who has a terminal illness to travel to a country where assisted suicide is legal, was rejected in a free vote by 194 to 141.
Introducing his amendment, Falconer said such people faced a "legal no-man's land" because the law said they should be prosecuted. But none of the 115 people who have travelled from Britain to help friends and relatives take their own lives in Switzerland had been prosecuted.
Campbell was scathing in response. "By going with this amendment we turn the traffic lights from red to green on state-sanctioned assisted dying, albeit in another country," she said.
"Those of us who know what it is to live with a terminal condition are fearful the tide has already turned against us. If I should ever seek death – and there have been times when my progressive condition challenges me – I want to guarantee that you are with me, supporting my continued life and its value."
She dismissed suggestions that Falconer's amendment would have no impact on disabled people on the grounds that it was aimed to help people with terminal illnesses who wish to die. Under Falconer's amendment, no prosecution would take place if two doctors certify the suicide.
"I tick every box of Lord Falconer's [criteria] to die," she said. "I could go tomorrow and, believe me, I would have no trouble in persuading two doctors. Three years ago two doctors persuaded me it was time for me to go on my way."
She said assisted dying was not supported by disabled people, apart from a small number. Assisted dying was "to abandon hope and to ignore the majority of disabled and terminally ill people".
The peer, who was helped by a colleague to take sips of water during her speech, handed over to another peer to continue with her speech. "If this amendment were to succeed I believe it will place a new and invidious pressure on disabled and terminally ill people to think they are closer to the end of their lives," her speech said.
Campbell speaks openly about her condition. "I am only four stone but when I bring all my junk with me – my ventilator, my ripple bed, my special chair and my medication – I need a truck to allow me to go on holiday," she said last month.
http://www.guardian.co.uk/society/2009/jul/07/disabled-peer-against-assi...
The law on assisted dying is to be thrust back into the spotlight during a House of Lords debate on the issue.
Peers will discuss a proposal by Lord Falconer calling for people not to be prosecuted for helping someone who is terminally ill to travel abroad to die.
More than 100 people from the UK have gone to Swiss clinic Dignitas to die, but as yet no-one has been prosecuted.
Lord Falconer will say helping someone go abroad to die should be allowed under a set of strict rules.
Such actions are deemed illegal under the Suicide Act.
But the former Lord Chancellor's amendment to the Coroners and Justice Bill will call for the law not to apply if two doctors confirm the person in question is terminally ill and deemed competent enough to make such a decision.
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 No one has the stomach to enforce the current law, because it is inhumane and further provides no protection for the vulnerable  Lord Falconer
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The motion will also say that the person travelling abroad to die should make a declaration that it is their decision to have an assisted death and this should be witnessed by an independent person.
Lord Falconer said: "No one has the stomach to enforce the current law, because it is inhumane and further provides no protection for the vulnerable.
"The threat [of prosecution] forces some people to go to die alone and earlier than otherwise for fear of what may happen to those who accompany them."
His move is being supported by Dignity in Dying.
A poll of more than 1,700 people carried out for the campaign group found two thirds supported a change in the law similar to the one being proposed.
Threat
Sarah Wootton, chief executive of Dignity in Dying, said: "Parliament finally has the opportunity to listen to the public and act on the issue.
"I hope they have the courage to do what is desperately needed and change the law to end the unnecessary threat of prosecution while safeguarding against abuse."
It comes after Debbie Purdy, a 46-year-old from Bradford who is terminally ill with multiple sclerosis, has fought a series of court battles over the issue.
She has asked for clarification over whether her husband would face prosecution for helping her travel to Switzerland.
She has already lost High Court and Appeal Court cases and is currently awaiting the verdict of Law Lords.
Dr Peter Saunders, of the Care Not Killing Alliance, an umbrella group of doctors, religious organisations and charities, said changing the law may be "dangerous" as it could lead to vulnerable people being pushed into going to clinics like Dignitas when they did not really want to.
He added the current law was working well.
"It has a stern face to deter abuse and a kind heart to allow compassion in hard cases," said Dr Saunders.
The death of Sir Edward Downes and his wife Lady Joan is likely to add further intensity to the debate over the law on assisted suicide, as it continues to be subject to both political and legal challenge.
Earlier this year the appeal court rejected a legal challenge by Debbie Purdy, a multiple sclerosis patient who wanted to clarify whether relatives and loved ones would be prosecuted in the UK for accompanying relatives to kill themselves abroad.
The courts, which have said it is for parliament to change the law on assisted suicide, acknowledged prosecutions were unlikely after the director of public prosecutions, Keir Starmer, decided last year that to prosecute the family of rugby player Daniel James, who also ended his life at Dignitas in Switzerland, was not in the public interest.
The House of Lords, which is yet to deliver judgment on a further appeal by Purdy, acknowledged last month that the offence of assisted suicide was being committed but there was no clear guidance as to whether prosecutions should be brought.
"If it is up to prosecutors up and down the country [to decide whether to prosecute], I can see the need for a code to guide them as to consistency," the senior law lord, Lord Phillips, said.
Attempts to change the law suffered a fresh blow last week when an amendment to the 1961 Suicide Act proposed by the former lord chancellor, Lord Falconer, was defeated. This month the British Medical Association also opposed a change to the law, which makes assisting suicide a crime punishable by up to 14 years in jail.
http://www.guardian.co.uk/society/2009/jul/14/assisted-suicide-law-edwar...
Guidelines on assisted suicide law in England and Wales will be published later to clarify when people are likely to be prosecuted.
It is currently illegal to help someone commit suicide, but as yet no-one has been prosecuted for helping a person go abroad to end their life.
The Director of Public Prosecutions Keir Starmer QC has drawn up the guidance following a Law Lords ruling.
He has already said it will not mean assisted suicide will become legal.
Instead, he has said he wants to set out when individuals are more likely to be prosecuted or not prosecuted.
"Again let me make it clear: this debate is not about legalizing euthanasia. If an individual directly causes the death of another, the appropriate charge is murder or manslaughter," Mr Starmer wrote in the Daily Telegraph.
He added: "So the critical question I have considered is this: what are the circumstances in which it is or is not in the public interest to prosecute a person against whom there is enough evidence to support the criminal offence of assisted suicide?"
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We hope no-one will be given immunity Peter Saunders, of Care Not Killing
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More than 100 Britons with terminal or incurable illnesses have gone to the Swiss centre Dignitas to die.
Several of the cases have been looked into by police, but none has led to a prosecution because the authorities have the power to use their discretion.
But earlier this year, Law Lords said Debbie Purdy, a multiple sclerosis sufferer from Bradford, had the right to know whether her husband Omar Puente would be prosecuted if he helped her travel abroad to die.
Interview with Debbie Purdy
Earlier this week Mr Starmer said factors that would be considered in a prosecution would be whether the person stood to benefit financially from the death and whether they had encouraged the suicide.
Sarah Wootton, chief executive of the Dignity in Dying campaign group, said more clarity was needed.
"We expect the criteria to more clearly distinguish between compassionate and malicious acts and in doing so better reflect public opinion and provide a clearer deterrent against abuse.
"This will represent a significant breakthrough in our campaign for greater choice and control at the end of life."
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On top of all the physical and emotional problems, there's this uncertainty David Witt
Helped wife's suicide |
But Dr Peter Saunders, of Care Not Killing, an umbrella group of doctors, religious organisations and charities, said it was a shame the DPP had been forced into this as the current situation was "working well".
"We hope no-one will be given immunity. It is only right that each case is looked into as this acts as an effective deterrent and protects the vulnerable.
"There is also a danger that the DPP will become a consultancy service for law breakers."
Lung cancer sufferer Elaine Witt died aged 56 in August 2007, having gone to Switzerland with husband David, 64.
Mr Witt, from Tonbridge in Kent, said that despite the threat of prosecution, his over-riding concern had been to accommodate his wife's wishes.
Prison sentence
But he said: "[The guidelines] would have helped us a lot. On top of all the physical and emotional problems, there's this uncertainty. You can't tell people what you're thinking."
However, he raised fears the situation could result in a "half-way house" of guidance without safeguards, such as requiring recorded consent and agreement of doctors.
The government could go further and allow assisted suicide for terminally ill patients in the UK, he added.
Anyone assisting someone to commit suicide can face up to 14 years in prison under the 1961 Suicide Act, which covers England and Wales.
A similar law applies in Northern Ireland and fresh guidance is also expected.
In Scotland there is some uncertainty as there is no specific law on assisted suicide, although in theory someone could be prosecuted under homicide law.
A bill is expected to come before the Scottish parliament soon in a bid to legalise assisted suicide.
http://news.bbc.co.uk/1/hi/health/8268709.stm
A small but statistically significant number of patients die each year when junior doctors start work in August, an Imperial College London study suggests.
Researchers looked at 300,000 patients admitted as emergencies to English hospitals between 2000 and 2008.
They compared death rates between the first week of August, when new doctors arrive, and the previous week in July.
After adjusting for various factors, they report in PLoS One that the August patients were 6% more likely to die.
The period when an influx of newly qualified doctors enter the wards has sometimes been dubbed the "killing season", but studies to establish whether there is any truth to this have been inconclusive.
The researchers from Imperial College London stressed they were unable to draw firm conclusions about the reasons for the increase, but that it was significant, if small.
Comparisons of the raw figures showed little difference, but when factors including age, sex, socio-economic deprivation and existing medical problems were taken into account, a discrepancy began to emerge.
'Rigorous training'
The differences were most pronounced among medical patients - those not requiring surgery and not suffering from cancer. For this group, death rates increased by 8%.
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Our study does not mean that people should avoid going into hospital that week. This is a relatively small difference in mortality rates, and the numbers of excess deaths are very low
Dr Paul Aylin
Imperial College |
"Our study does not mean that people should avoid going into hospital that week. This is a relatively small difference in mortality rates, and the numbers of excess deaths are very low," said Dr Paul Aylin, from the Dr Foster Unit at Imperial College.
"It's too early to say what might be causing it. It might simply be the result of differences between the patients who were admitted."
But the report notes that if these differences are due to the changeover of hospital staff, "then this has potential implications not only for patient care, but for NHS management approaches to delivering safe care".
Doctors' representatives sounded a note of caution.
"This study has to be judged alongside many previous studies looking at mortality rates before and after junior doctors start their new jobs, which have not shown any differences," said Dr Shree Datta, chair of the junior doctors' committee at the British Medical Association.
"Clearly even a small increase in death rates is of great concern and we need further research to see whether this is a real effect or an anomaly."
Hugh Williams, of Action Against Medical Accidents, said: "I think some junior doctors are thrown in the deep end and are expected to get on with it.
"It would be interesting to know how quickly this effect wears off and how different hospitals deal with the intake of junior doctors every August."
A spokesperson for the Department of Health said: "Patients should be reassured that junior doctors undergo rigorous training and they undertake direct clinical care in areas where they have been trained and assessed as meeting the required competency.
"Local hospitals must ensure that they responsibly manage the introduction of new junior doctors each August by providing appropriate senior cover and supervision."
Declining financial skills are detectable in patients in the year before they develop Alzheimer's, according to US researchers.
The researchers say this could be a useful indicator for doctors supporting people with memory problems.
Previous studies have shown that problems with daily activities often precede the onset of Alzheimer's.
But charities said most people having trouble working out figures should not be alarmed by the study.
Financial skills
The research from the University of Alabama in Birmingham is published in the journal, Neurology.
The researchers studied 87 people with mild cognitive impairment (MCI), 25 of whom developed Alzheimer-type dementia during the study period, and 62 who did not.
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This study suggests that if you already experience significant memory problems and start to notice a decline in your financial skills it could be a sign of developing dementia
Dr Susanne Sorenson
Alzheimer's Society |
They compared them with 76 healthy people with no memory problems.
They used a tool called the Financial Capacity Instrument (FCI) to measure their skills over a period of a year.
The FCI looks at skills including understanding a bank statement, balancing a cheque book, paying bills, preparing bills and counting coins and currency.
Tested at the start of the study and then a year later, the overall FCI scores for the 25 patients who progressed to Alzheimer's disease, showed a 6% decline.
Their skills in managing a cheque book dropped by 9%.
The control group and the 62 people with MCI who did not progress to Alzheimer's maintained the level of their FCI scores throughout the year.
Useful indicator
Professor Daniel Marson, who led the study, said: "Declining financial skills are detectable in patients with mild cognitive impairment in the year before their conversion to Alzheimer's disease.
"This indicates that physicians and health-care providers need to watch patients with MCI closely for declining financial skills and advice families and caregivers to take steps to avoid negative financial events."
Dr Susanne Sorenson, head of research at the Alzheimer's Society, agreed that this could be a useful indicator for doctors.
She said: "Everyone struggles now and then to divide a restaurant bill or tot up a cheque book.
"However, this study suggests that if you already experience significant memory problems and start to notice a decline in your financial skills it could be a sign of developing dementia."
Rebecca Wood, chief executive of the Alzheimer's Research Trust, said it was important to stress that the study only focussed on people with pre-existing memory conditions.
She said: "People who miscalculate a restaurant bill or add up their change wrong should not necessarily be concerned.
"The findings do suggest that a decrease in specific money skills could indicate a progression towards Alzheimer's, and this is something doctors could take into account when monitoring patients."
http://www.radar.org.uk/radarwebsite/RadarFiles/Independent%20Living/Health%20and%20Social%20Care%20(Independent%20Living)%20Bill%20Briefing.doc
http://www.radar.org.uk/radarwebsite/RadarFiles/Independent%20Living/IL%...
http://www.radar.org.uk/radarwebsite/RadarFiles/Independent%20Living/Car...
http://www.radar.org.uk/radarwebsite/RadarFiles/Independent%20Living/Fut...
Statement about the ILF from the Minister for Disabled People, Maria Miller MP, July 26, 2010
The trustees of the Independent Living Fund took the decision to close the Fund to all new applicants as of June 2010. This decision was taken to ensure the Fund remained within its £348m budget. This followed the decision in March to write to local authorities announcing that from 1st May the Fund would only be able to accept new applications from disabled people in paid work of 16 hours or more, in line with the existing priorities set out in its governing Trust Deed.
We have considered the circumstances that led to the decision to restrict eligibility and then to close the Fund to new applicants. A combination of factors contributed to this situation. The uncertainty and sensitivity of financial forecasting assumptions and a short-notice £11m reduction in the Fund’s 2010-11 budget implemented by the previous administration led to the trustees’ decision to restrict eligibility for the Fund. The previous administration failed to approve this decision - which enabled the ILF to live within their 2010-11 budget - until March 2010. The confusion and uncertainty caused by this chain of events is unacceptable.
Further compounding the situation was the failure of the previous administration to take a principled and strategic decision about the future role of the Fund. This was despite a comprehensive and independent review of the Fund published in 2007 which recommended that the ILF should retain NDPB status until 2009/10 at which point a decision should be made, based on the presumption of the full integration of the funding stream into personalised budgets.
The Coalition Government is committed to ensuring severely disabled people receive the support they need and, working closely with the trustees, we will consider and settle the long-term future of the ILF as part of the forthcoming Spending Review.
Rates of suicide, murders and heart attacks will go up as the economy continues its downturn, experts warn.
The predictions are based on an analysis in the Lancet of economic changes and death rates in 26 EU countries over the past three decades.
Rising UK unemployment could mean at least 290 extra suicides, they say.
The British Chambers of Commerce (BCC) says the worst of the recession is over, but that 10% of the workforce may still suffer unemployment by mid-2010.
The unemployment rate was 7.2% for the three months to April 2009, up 0.7% over the previous quarter and up 1.9% over the year.
The number of unemployed people increased by 232,000 over the quarter and by 605,000 over the year, to reach 2.26 million.
BCC expects it to peak at 3.2 million by mid 2010.
Excess deaths
The study by experts at Oxford University and the London School of Hygiene and Tropical Medicine shows that a 3% rise in unemployment is linked with a 2.7% rise in heart attacks among men aged 30-44 and increases of 2.4% in murders and suicides in people under the age of 64.
Deaths from alcohol abuse meanwhile rise substantially, by 28%.
At the same time road traffic deaths drop 4.2%, probably due to an increased number of people choosing to walk or take public transport rather than drive themselves, which the study authors say are "safer" ways of getting around.
And schemes to get people back to work and in jobs can mitigate some of the adverse effects, they say.
They found if a government spent above £115 ($190 or 135 euros) per person per year in active labour market programmes, a 3% rise in unemployment rate would have no effect on the suicide rate.
Lead author Dr David Stuckler, from Oxford University, said: "Our study suggests that investments in active labour market programmes can both help the economy and prevent rises in death.
"Financial crisis causes economic hardship for many ordinary people, but it does not have to cost them their lives."
Co-author Professor Martin McKee, from the London School of Hygiene and Tropical Medicine, said suicide rates were just the tip of the iceberg and that many more would suffer from high levels of mental distress.
A spokesman for the British Chambers of Commerce said: "Unemployment tends to come after things have been bad. There is a lag, and we expect to see a peak by mid-2010 when unemployment could affect 10% of the workforce."
Paul Farmer, chief executive of the mental health charity Mind, said: "Mental wellbeing depends on a wide variety of factors, from employment status and conditions in the workplace to financial security, all of which can be affected during a recession.
"Life events such as being made redundant can be extremely distressing and are known to trigger depression and suicidal thoughts, along with unemployment, financial difficulties and debt.
"Redundancy can have a particular impact on men, who are thought to be more vulnerable to falls in status than women - as many as 1 in 7 men develop depression within six months of losing their jobs."
http://news.bbc.co.uk/1/hi/health/8138015.stm