Southampton Centre for Independent Living

On February 14, the Disability Rights Commission launched what will probably be its last major inititative before it is merged into the new Commission for Equality and Human Rights in October 2007.

The Disability Agenda sets out what the DRC consider to be the major public policy challenges that Britain is facing and the action required to meet them.  These include promoting a culture of human rights and equality, bringing an end to child poverty, increasing life chances through learning and skills, ending poverty and widening employment opportunity, increasing participation in public, civic and community life, developing a social care system fit for the future, tackling health inequality, meeting the future housing challenge and building stronger safer communities. 

All very worthy aims and remarkably similar to the 12 basic rights that SCIL adopted 20 years ago. Although at first glance, the agenda just looked like a bunch of worthy aims but with no substance, the DRC has drawn up a list of recommendations for each aim, which hopefully both central and local government as well as others will consider when drawing up their future strategic plans.

It is still unclear how much attention the new Commission for Equality and Human Rights will give to disability issues but hopefully the Disability Agenda will be adopted by the new Commission and others in an effort to effect change over the next 10 years.

Last week the Commission of Social Care Inspection published its annual report into the state of social care in England. It found that more services are meeting minimum standards, but despite spending more, councils are tightening local rules about who qualifies for state-funded social care.

This means that more and more older and disabled people either have to find and pay for their own support / assistance or rely on family members or friends.As local councils support fewer people, informal unpaid carers have to fill in the gaps, with inadequate support structures to help them and no system in many areas to help people find the services they need.Those who have no one to rely on may have to make do without support until their situation becomes critical.

CSCI Chair Dame Denise Platt said:“Social care services in England are gradually getting better, but only for those people who manage to qualify for help. As councils face an increase in the number of older and disabled people and in the costs of care, many have responded by raising the threshold people have to pass before they are entitled to a council-funded service. As a result, irrespective of the quality of social care services, fewer people are receiving services.Those who do qualify for care have a high level of need.”

“The options for people who do not meet the criteria set by their local council are limited. In some cases, people rely on friends and family members. In others, they pay for their own care. Some people have no option but to do without.“

“It is also clear that external pressures on the sector are hindering progress in making services better for the people who use them. In particular, NHS budget deficits in some areas are putting a strain on relationships at local level and potentially undermining essential partnerships in both adult and children’s services.”

The report also found that although there has been a substantial increase in the numbers of people using direct payments, these are very small compared to overall numbers of people who use social care services. Pilots for individual budgets are shifting traditional views on how to provide support, but lessons are yet to be learned prior to any national roll-out. Most people, including those who fund their own care, are not yet in a position to exert pressure on the care market and alter the local ‘menu’ of services.

The report had particular concern for the various groups including:

1. Those people who are not using services arranged by the council but who seek support and good information about what may be available. As yet, there is limited evidence as to whether people are successfully directed to alternative and appropriatesupport or properly informed about the options open to them.

2. Carers, unpaid relatives and friends who are bearing the costs of ever-tighter eligibility criteria for services.

3. People who have little, if any, choice and control over the services they use. There are still too many people who are offered little, if any, choice of services; nor do they have any choice as to who comes into the privacy of their homes to provide assistance and when and how support is provided. 

CSCI have pledged to examine the impact of tighter eligibility criteria over the next year and SCIL welcomes this move.  This report is yet another signal that both government and society need to seriously examine the future of social care within Britain before things get any worse.

As we say goodbye to 2006, and beckon in the new year, I thought it was an apt time to reveal the most viewed articles on the SCIL blog for 2006. 

1. Anti Discrimination Laws in the Workplace
2. We don’t do that sort of thing…do we?
3. We Know Inclusion Works
4. I’m with Stupid (but I’m not Laughing)
5. Active Euthanasia for Disabled Babies Being Considered
6. Welcome to the SCIL Blog
7. Is Disability the new Reality TV Gimmick?
8. Shock as Hampshire Split Direct Payments Contract

Hopefully, there will be lots more interesting articles on the SCIL blog in the coming year so stayed tuned. Happy New Year from all at SCIL. 

Thirty three years ago on November 5th 1973, I was born in Frimley Park Hospital. It was immediately obvious that I was disabled and my mother was advised on more than one occasion to leave me at the hospital and forget about me. As is very common, doctors told my mother a series of negative predictions about my future. Apparently, I would be blind, deaf, have epilepsy, never be able to talk or communicate. They even used the classic ‘he’ll be a cabbage’ line.

So why am I telling you all this? Last Sunday was my thirty third birthday and flicking through the papers I was horrified but unfortunately not that surprised to read that the Royal College of Obstetricians and Gynaecology is calling on the health profession to consider permitting the euthanasia of seriously disabled newborn babies. Apparently the college is arguing that “active euthanasia” should be considered for the overall good of families, to spare parents the emotional burden and financial hardship of bringing up the sickest babies.“A very disabled child can mean a disabled family,” the report says.

One contributor to the Sunday Times article, John Harris, a member of the government’s Human Genetics Commission and professor of bioethics at Manchester University argued “We can terminate for serious foetal abnormality up to term but cannot kill a newborn. What do people think has happened in the passage down the birth canal to make it okay to kill the foetus at one end of the birth canal but not at the other?”  The saying ‘two wrongs don’t make a right’ springs to mind. There seems to be very little appreciation amongst the medical profession that people with impairments can enjoy a good quality of life and contribute to the richness of the society in which we live.

The Nuffield Council of Bioethics are publishing their report ‘Critical care decisions in fetal and neonatal medicine: ethical issues’ on the 16th November and it will be interesting to see whether the opinions of Royal College of Obstetricians and Gynaecology are echoed in the report. Unfortunately I am unable to attend the launch of the report however as always I’ll keep you posted through the blog.

In 1973, I had a chance to prove the doctors wrong. In 2006, disabled babies may no longer be given that chance.

Individual Budgets are the current government buzzword and it looks highly likely that they will be the successor to Direct Payments. The idea of Individual Budgets is that they will be a way of pulling together various different sources of funding under one umbrella. Therefore Individual Budgets may consist of Direct Payments funding, Independent Living Fund money, Access to Work funding, Supporting People funding, as well as the Disabled Facilities Grant and funding for equipment.

This one budget will then allow Disabled People to use the money in a way that best suits their own needs and situation. Disabled People will also receive support to plan what they want and how they wish to organise it, from a broker or advocate, family or friends. The Government chose 13 local authorities around the country to pilot Individual Budgets and depending on the results of the pilots, the scheme is likely to be extended.

Alan Milburn, former Health Secretary, has however strongly indicated that some Disabled People may be able to receive health funding as part of their Individual Budget in the future. This move would be welcomed by many Disabled People who may have long term health needs as at present there seems to be a ‘grey area’ as to whether people can receive Direct Payments to meet long term health needs.  A few years ago, there were many cases where funding for health needs could be transferred from the NHS to Social Services and then Social Services would then pay the Disabled Person the money as part of their Direct Payments.  This has become less common in recent years.

Alan Milburn said “The Department of Health is currently piloting individual budgets for a wider range of services…Health care is not yet included. I believe it should be for patients whose care needs already entitle them to receive a direct payment for social care. Otherwise we miss the opportunity of genuinely integrating care into the patient’s point of view.” 

This would be a major step forward as most Disabled People find the distinction between ‘health’ and ‘social care’ needs both arbitary and unhelpful. As more and more health care is being delivered in people’s own home, it makes sense for people to choose when and how their ‘health’ needs are addressed, in the same way that Disabled People can choose when and how their ‘social care’ needs are addressed using Direct Payments.

There has been a lot of media interest this week in the case of Charlotte Wyatt. Charlotte Wyatt suffered serious brain, lung and kidney damage after she was born three months prematurely weighing 1lb in October 2003.Her parents were then forced into a long legal battle to force doctors to give her artificial ventilation.

Despite all expectations, Charlotte has survived various setbacks and is now well enough to leave hospital.Unfortunately, Charlotte’s parents have now separated and due to these circumstances, Social Services are looking for foster carers for Charlotte.

Obviously we do not all the details of the case, however the reaction of the media is worrying. In a BBC Radio 2 phone-in on Monday, I heard callers say that Charlotte should be given a lethal injection if the parents cannot look after her. Other callers mentioned financial resources and seemed to question how the parents dared to split up after they had fought to keep their daughter alive.

 It feels to me what is missing is any regard for Charlotte as an individual. Of course it is unfortunate her parents are not currently in a position to take her home, but how people can think that therefore Charlotte shouldn’t have been given a chance of life is beyond me. Are we going to start denying all children medical treatment unless they can prove their parents will stay happily married until they are 18?

 This should be a good news story as Charlotte is now well enough to leave hospital and doctors are now measuring Charlotte’s life expectancy in “months and years” rather than “weeks and months” but yet again her parents are being vilified for doing what most parents try to do; Protecting their children.