Monthly Archives: July 2014

We Need a new Approach to Social Care!

Just the other week, a care worker was sentenced to four months in prison, and another two given suspended sentences, for their roles in a catalogue of mistreatment and abuse of people with Alzheimer’s disease at a care home in North Somerset. Despite the introduction of some of the tightest regulations and monitoring in the social care sector, incidents of abuse and ill-treatment of vulnerable groups continue to present in the headlines on a regular basis.

Care in the community in nothing new. The concept has been attributed to the Thatcher government during the early 1980s but the ideas can be sourced back the 50s.  Why then, after so long and amid such tight regular does society continue to allow the will full neglect and abuse of our most vulnerable and fragile people?

None of us need rack our brain or look too far to find an example of mistreatment either of elderly people of those with learning disability. It is just over a year ago since the BBCs Panorama program secretly filmed the abuse of people with learning disabilities at the Winterbourne View care home. Residents were treated to the most brutal torture and abuse after their families had entrusted them into the care of Castlebeck, the care company who own the home.

A look at the job pages on a local website usually throws up a large number of care worker jobs both for agencies and individuals covering as wide range of client group. Amid such high levels of unemployment and the number of immigrants coming to this country, the number of vacancies in the care sector compaired to other fields seems disproportional high.

Unfortunately care work is seen as an undesirable career with its long and unsociable hours, usually on low or minimum wage, and often working in a very challenging environment with a difficult client group. Care agencies and organizations tend to have a higher turn over of staff, higher rates of sickness and absenteeism, a result of which means that organizations rely on relief or bank staff.  Another obvious impact is that staff are usually not as well trained and a high turnover means less continuity of care for the service users.

Sadly, the biggest losers in this sector are the clients who, more often than not, end up with poor standards of care or in many cases as we have witnessed end up being neglected and abused. Until society starts investing in people, and the people who care for them, we will continue to fail, neglect and marginalize our most vulnerable members of society.

Maybe its time to stop awarding care contracts to private companies who’s primary purpose is to make money, rather than being in the business to care for people.  Vulnerable people need to no longer be seen as a cash cow but rather as a group that we all share in the social responsibility for.  They need highly trained and motivated staff to care for them and, if this means the state investing money, it will be every penny well spent. As well as being trained appropriately staff need to be remunerated accordingly and paid a living wage instead of the minimum. We need to make care a desirable profession to go into where staff are employed because they want to care, and want to stay in their job. This in turn would result in a lower rate of absenteeism, and higher retention of highly trained and motivated staff.  Vulnerable people deserve nothing less than the highest standard of care and protection but without significant sector change, we might continue to witness such appalling examples of abuse and neglect.


Give disabled people support to live, not right to die

Give disabled people support to live, not right to die

'Thousands of disabled people live valuable and productive lives given the right support'

‘Thousands of disabled people live valuable and productive lives given the right support’



Last weekend, former Archbishop of Canterbury Lord Carey spoke in favour of assisted suicide. The 24 hours that followed contained a barrage of headlines, interviews and reports covering opinions from both sides of the argument.

But notable by their absence were the views of disabled people, many of whom have vehemently opposed the introduction of any form of assisted dying legislation.

Disabled people have created groups such as the Not Dead Yet campaign to air their voices. However, the opinions of the disabled community seem to be lost in the furore and the voices of the individuals this bill is most likely to affect are not being heard.

A sheet of tissue paper could be used to represent the gap between illness and disability. The late Margo MacDonald MSP, in her final attempt to pass a similar bill through the Scottish Parliament, said “it has nothing to do with disabled people”. Surely this bill has everything to do with disability?

Earlier this year the government in Belgium – which has had assisted suicide legislation for 12 years – voted to extend the legal right to assisted dying to terminally ill and disabled children. Those who claim the introduction of this kind of legislation in Britain would not be the first steps down a rocky moral road need only look at the Belgian example.

Thousands of disabled people live valuable and productive lives given the right support. Rather than considering how we can help people to end their lives, we ought be looking at the support society can give them to reach full potential.

The living standards of disabled people are being eroded by cuts to welfare and services that thousands rely on to maintain independence. Rather than offering disabled and terminally ill people the right to die, society ought to offer them the support to live.

There can be nothing less dignified than delivering a lethal injection to end someone’s life who we, as a society, have failed to make worthwhile and value.

• David Reilly, a molecular medicine graduate from Edinburgh, has cerebral palsy

DLA Reform

‘Cruel and Callus,’ are among the terms that have been used to describe the Governments plans to reform Disability Living Allowance (DLA), a reform that will inevitably leave thousands of disabled people without the vital money they need to live their daily lives. Is it thought that among the 80,000 people in receipt of DLA, the majority will end up around £2500 a year worse off.

Last month the coalition released a consultation document out lining its plans to replace DLA with a new streamlined benefit called Personal Independence Payment (PIP) which the government say will be more efficient, simpler to understand and will replace a current system that is confusing, complex and unsustainable. Claimants between the ages of 16 and 65 will undergo reassessment and, by 2013/14 everybody will be on the new benefit.  Consultations are generally allowed to run for three months, however this one was released in December and given only two months to run with the fortnight’s Christmas break in the middle.

The purpose of DLA has been to enable disabled people to be in control of their own lives and to live as independently as possible. DLA, and in recent years Direct Payments, had enable disabled people to buy in the services they need to live on. This gives the autonomy to the individual to buy in the services they require rather than having a prescriptive support system that was both restrictive and disabling. PIP will have a mobility component to it, although the government have already stated that those living in care homes will not be entitled to the mobility component and will be expected to rely on any transport that their care provider is either able or willing to make available. Further more, ministers responsible have stated that those able to get around by use of a wheelchair will not qualify for the mobility component of the new benefit.

If anything, the new benefit will take away the independence of thousands of disabled people and instead make them rely on the good will of others for getting around. Why should somebody in a care home have to rely in the good will of his or her service provider to get around? Care homes already have their resources stretched and they will be under no obligation to provide transport to enable residents to access goods and services. A wheelchair user may not be entitled to benefit and left to get around in their chair. However, when many shops, venues and public transport are still not accessible, how can we expect a wheelchair user not to incur great costs and need taxis and assistance to get around?

These are two examples of many of the hidden costs of being disabled and the extra money that is needed to enable disabled people to live independently. Disabled people often face extra costs that they incur by just going about their everyday business. For example, heating bills can be much higher for someone with impaired mobility, or laundry costs can be greater if someone have difficulty eating or experiences any sort of incontinence.  To the outsider, as long as disabled people can get around, that is the end of the matter. However, the costs of being disabled can be much higher than most people anticipate.

Since the announcement of the new benefit, disability charity Leonard Cheshire has been inundated with calls from disabled people worried about whether or not they are going to have enough money to live on. It is unlikely that we will see mass demonstrations in protest to the government’s proposals. It would be nearly impossible to mobilise 50,000 disabled people onto the street of London this making the disabled community a soft target for the government.

Disability Charity in Scotland

In October last year, Capability Scotland began a yearlong celebration to mark the 60th year since its inception in 1946. Named “The Spastic Society” back then, Capability began as a group for parents of children with Cerebral Palsy and is now one of Scotland’s leading disability charities. However, as someone who has Cerebral Palsy, I find myself wondering how far the disability movement has come over the last 60 years, and what charities such as Capability have and are really doing to promote disability.

The way that disabled people integrate into society has moved on considerably over the last few years, particularly from the 1970 and ‘80s where many disabled people were often confined to institutions and were excluded from mainstream society. Thankfully, thing are slightly different now and disabled people are slowly being integrated into schools, housing and employment, and are being given access to local services which previously would have been impossible. However, despite attempts to further integrate, disabled people remain largely marginalized and on the periphery of our society. Statistics demonstrate that disabled people are still several times more likely to be unemployed, more likely to be living on benefits, have little or no education and have poor access to public services and transport. The 1995 Disability Discrimination Act (DDA) was designed to prevent employers and service providers from denying disabled people access to jobs and services on the grounds of disability. However, more than a decade on statistics still demonstrate that disabled people are still being excluded from their communities.

An entire economy seems to have developed around disability where there are numerous charities in Scotland that have established themselves to provide some sort of service to disabled people. Disability charities come in all shapes and sizes and providing different services ranging from support to parents of disabled children to advice to employers on recruiting disabled staff. Such charities tend to be funded by organisation public money as well as charity funds like the National Lottery, European Social Fund or independent trust funds.

Unfortunately, many disability charities are both governed and run by able-bodied people and figures have shown that such charities often employ little or no disabled people. For example in 2004 it was estimated that Capability Scotland employed around 1300 staff across Scotland of which only 5 or 6% were disabled. Similarly, the RNIB had a workforce where only around 8% were disabled people. Organisations such as Intowork in Edinburgh, an agency set up to promote disability in employment, employs only a very small proportion of disabled staff.

I find myself wondering why society, and in particular the disability movement, has allowed a culture to develop where able-bodied people are responsible for providing services and making decisions that directly affect the lives of disabled people. I’m not aware of any other minority groups where this has happened. For example, I have yet to come across a national organisation, which promotes rights for ethnic minorities that only employs 8% of its staff from ethnic minorities, or an agency that campaign for lesbian and gay rights where 90% of its staff are straight. This situation would not occur for other minority groups, however seems to be generally accepted when it comes to disability organisations.

The culture where disability charities are run and governed by able-bodied people is one that has developed over several decades and possibly stems from the way that disability was traditionally perceived.  There are charities in existence which have been around for a long time and were established in the days when disabled people were institutionalised and were viewed as a needy cause. Many of these charities have changed their name and tried to change their image in some way, but unfortunately they still hold onto their traditional principals and values.

Charities that still hold on to traditional values ought to look at the way they portray disability and what affect that has on the disabled community. For example some prominent charities still use images and slogans and images about disabled people learning to do menial tasks such as cooking or eating by themselves. Charities with a focus on disability and employment often show disabled people in very low paid or unskilled work such as cleaning or gardening. The image and the messages that this gives out about disabled people is a very negative message indeed and does nothing to promote and further the rights of disabled people. As someone who has Cerebral Palsy I find this sort imagery most disempowering and in my mind only perpetuates the notion that disabled people are not able to play a full and equal role in society.

In order to move closer towards an equal society, there needs to be an entire shift in the way the disability is portrayed. Organisations need to move away from the traditional values and dissociate themselves from the word charity all together, and begin talking about equality and human rights. The Disability Rights Commission (DRC) is about to merge with other rights commissions to create one Equalities Commission which encompasses  race, gender and sexual orientation as well as disability. Perhaps now in a good time to begin campaigning for equal rights in the same way that other minority groups do.

To begin to change the way people think of disability and to drop the traditional ideal of charity, organisations need to look at the way they operate. For example, Capability Scotland has charity shops across Scotland to raise money the help their campaign. This does nothing but reinforces the notion of the disabled community being needy and unable to help themselves. I have yet to come across a charity shop trying to raise money for lesbian or gay people or to help campaign for racial awareness. Disability charities not only need to change their ideas of disability, but also need to lead the way and set an example to other organisation by getting disabled representation at board level and actively recruiting disabled people.

When The Spastic Society changed its name to Capability Scotland, which I must say is another unhelpful name, it split into two agencies one for Scotland and one serving England and Wales.  I am pleased to say the Scope, Capability’s equivalent in England and Wales, has changed a lot in the recent years and has begun to align itself more with equality and rights rather than the traditional charity ideals. This is visible in much of Scope’s publicity material and literature where it gives out a much more positive image and message about disability. I only hope that organisations like Capability follow suit and perhaps then the Scottish Executive, employers and service providers may take the rights of disabled people more seriously.