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Learning disability shock

February 2015 | by Ros Bayes

The nation was shocked in 2011 when the BBC’s Panorama programme exposed the scandalous, everyday abuse of people with learning disabilities at Winterbourne View.

There was much hand-wringing from the authorities, and promises that people who were inappropriately housed in private care homes and NHS units away from their families would be found more appropriate care in the community, closer to where they live.

Three years on, little has changed. People are still detained in units many hours’ drive from their families. More people are being moved into these units than are leaving. Abuse can still take place behind closed doors.

Preventable deaths

There have been two shocking, needless and preventable deaths in these units. Connor Sparrowhawk, an 18-year-old with autism, a learning disability and epilepsy, drowned in the bath on 4 July 2013, four months after being moved to an NHS assessment and treatment unit in Oxfordshire.

A damning report found that Connor’s epilepsy was not properly assessed or managed; that there was no adequate supervision at bath times, no effective clinical leadership, no genuine attempts to engage him in activities, and no attempt to involve family in his assessment and care. The unit has now been closed, and seven of its staff face disciplinary hearings.

A month later 25-year-old Stephanie Bincliffe died from heart problems and sleep apnoea arising from morbid obesity. At the age of 18 she had been admitted to a hospital 75 miles from her home.

She was sectioned under the Mental Health Act and during the following seven years detained in a padded room with no fresh air or exercise. As a result her weight ballooned from 16 to 26 stone.

Shockingly, the coroner found that there was no neglect, but also no cohesive plan to address her weight. He added that treatment options could not be used because of her autism and self-harm.

As a parent of an autistic young person who self-harms, I find this response very surprising indeed. People with autism self-harm when the emotional pain of life is so distressing that their only coping mechanism is to replace it with a manageable, physical pain. Their behaviour and self-harm will regulate itself if they are placed in a situation where they feel safe, secure, valued and loved.

Action needed

Stephanie Bincliffe’s mother responded to the coroner’s remarks by saying, ‘We are disappointed that the verdict does not reflect the ordeal that we as a family have gone through, or that Stephanie went through. Things have to change so that this does not happen again’.

How wearingly often we have heard the words ‘this must not happen again’ and ‘lessons must be learned’! Words are cheap; action requires determination and compassion.

This malaise should be of urgent concern to Christians in this country. How we treat ‘the least of these’ reflects how we are treating Christ. As John Swinton said recently, ‘When things are wrong, people should be outraged; absolutely outraged that people are doing things against people with disabilities’.

In the nineteenth century, the 7th Earl of Shaftesbury (18011885) was so appalled by the treatment of mentally ill people in lunatic asylums that he set about reforming the law and improving the treatment of people with mental illnesses.

Next, he tackled the working conditions of children by introducing laws restricting their hours of work, and ensuring that it was illegal to employ children under the age of nine.

After this, he worked to outlaw the employment of women and children in coal mines and the practice of sending children up chimneys. He also became president of the Ragged School Union, promoting education for children from the poorest backgrounds.

He became known as ‘the poor man’s earl’ and his legacy partly lives on today in Livability (formed from the merger of the Shaftesbury Society with John Grooms).

A few decades later, Thomas John Barnardo (18451905), a young Irishman, came to London to study medicine. It was his intention to become a missionary in China, but faced with large numbers of homeless and destitute children in London, and encouraged by Lord Shaftesbury, he relinquished this ambition, instead setting up homes where abandoned or orphaned children could be housed, fed, clothed and educated.

Personal sacrifice

Both men recognised great needs arising from injustice, and heard God’s call to speak and act for those who could not speak up for themselves. Both men invested considerable sums of their own money and made personal sacrifices to make their vision a reality.

In these times of austerity, there is again a need for the people of God to speak up on behalf of the voiceless, roll up their sleeves, reach into their pockets and begin to be the change they want to see in the world.

So what can churches do? There are a number of ways to ‘start small’. People can lobby their MPs for change. There are campaigns already underway which would receive a tremendous boost if churches all over the country encouraged their members to support them.

Connor Sparrowhawk’s mother has started a campaign, ‘Justice for LB’ (‘Laughing Boy’ was his nickname), which aims to raise awareness every day until the first anniversary of Connor’s death, and which is promoting a private members’ bill to make substantial changes to the law in order to safeguard disabled people.

Another proposal is to use £30m of Libor rigging bank fines to create appropriate provision and move people with learning disabilities out of hospitals and assessment units and into good, local community care.

MENCAP is campaigning for an independent inquiry into every death of persons with a learning disability in an NHS unit. These are initiatives which Christians can and should be supporting and drawing to the attention of their MPs.

Around 2600 people with learning disabilities and autism are still in private or NHS-run settings like Winterbourne View. More than 60 per cent have been there over a year and 20 per cent for more than five years.

With the move to empty these homes and get people into community care, there is a risk that impersonal, money-making facilities will spring up and the needs of the individual will not be prioritised.

Christian philanthropists

So it is good for churches to start small by backing existing campaigns, but it is not enough. We need 21st century Christian philanthropists, following in the footsteps of Shaftesbury and Barnardo, who will set up homes for young people with disabilities, where their worth as valued individuals, created in the image of God, can be celebrated and reflected in an excellent standard of care.

If this sounds like an ambitious plan, let us not forget that many churches have already done this for older people, with retirement and nursing homes.

Most care homes for senior citizens have a chaplain attached to them, yet this is not the case with care homes for younger disabled people. Could your church find out where disabled people are housed in your community and offer a chaplaincy service? Could you go beyond this and look at providing quality care homes, in the way that so many churches have done for their elderly population?

It is time to take Jesus’ words seriously: ‘Inasmuch as you have done it to the least of these my brothers, you have done it to me’.

Ros Bayes

The author is training resources developer at Through the Roof