Kenny’s life in not easy. He is blind, unable to speak, needs help with eating and drinking and suffers seizures that have impacted on his cognitive abilities. For much of his life he was stuck in an institution, abandoned by his family and with no real friends.
His life changed when a charity moved him into his own home and provided him with the care to live within his local community. Much of the success of the move was down to the team leader, who became such good friends with Kenny he would invite him to his home for barbeques in the summer and Christmas dinner with his family.
The strength of their relationship and the warmth of the family environment was at the root of a heart-warming triumph – a young man with profound and multiple learning difficulties who was able to take his rightful place in the midst of society.
Until the local authority who funded the care found out. They decided the pair’s relationship was wrong, that such a friendship was “unprofessional” and crossed the boundaries of what was acceptable. So they ordered it to stop. No more meals with the family, no more days out or festive fun.
Kenny became upset and withdrawn. It was hard to explain to him that he had done nothing wrong, that he was just a victim of red tape and over-zealous officials. He sank into mental decline, with mood swings, aggression and depression, which ended in a full-blown breakdown.
After two years of torment, a psychologist said the council had taken away a vital prop in Kenny’s life and persuaded it to permit the family visits again – although officials effectively washed their hands of Kenny, telling the charity that if anything untoward happened they were not responsible.
“It was absolutely disgusting,” said one of the charity’s staff. “The council was so risk-averse they wrecked a young man’s life. All they cared about was covering their own backs, but it should not be up local authorities to stop human relationships like this.”
Sadly, all too often these days it is. Such simple acts of kindness are being stifled by the state. So strong is the fear of abuse and litigation that friendship towards the old, the sick and the disabled is seen as something to be frowned upon by officialdom these days – and the losers are some of the most lonely people in the country driven further into isolation.
One care worker who took spare eggs from the hens in her garden to the elderly people she looks after was told to desist. Another was banned from inviting people she had long cared for to her wedding, much to her distress. A third was not allowed to give birthday presents to people she worked with.
This is the flip side of the saccharine image Britain presented to the world when it hosted the Paralympics. In each case, the same incredible scenario: carers who cared deeply about the people they were working with, treating them with dignity and decency that went beyond the basic duties of their jobs, being told off by back-office bureaucrats focused only on ticking boxes.
In another case, a group with learning difficulties got on so well with their carers that they became family friends and used to visit them at home. One member of staff with a swimming pool was especially popular. Then new management took over and not only banned the home visits, including the swimming outings, but barred staff from even mentioning their families at work.
Pause to consider this. Care workers – underpaid and undervalued in our society, who do highly demanding jobs for the fulfillment of helping those less fortunate – prohibited from chatting about their domestic lives at work. It must make them question their vocation.
This is the corrosive legacy of our safety-first society. We have seen it with health and safety rules that tip over into absurdity. We have seen it with compliance cultures that kill off creativity. And we have seen it with employment laws that stifle economic growth.
We have also seen what happens when rules and targets become more important than patient care in the National Health Service, with a series of damning reports from the Patients Association and the squalid deaths of hundreds of elderly people from neglect and starvation in the mid-Staffordshire hospital scandal that emerged three years ago.
Nowhere are such attitudes more damaging that in the Cinderella world of social care, where compassion is being driven from the front line. It is a process happening slowly, surely, silently and to our national shame.
As the parent of a teenager with profound disabilities, I find it deeply alarming – not least since our carers are encouraged to become friends with our daughter. It is lovely when this goes beyond the call of duty with meals out, parties, concerts and trips to the seaside; we want her to live as normal a life as possible.
A series of high-profile scandals have heightened alarm over sexual, physical and even financial abuse. There is, of course, genuine cause for concern, as we saw with Panorama’s expose of vicious bullying at a residential home for people with autism last year and a series of horrific hate crime cases.
There needs to be vigilance. But the solutions are not always more rules, more regulations and more state control. After all, the lamentable Care Quality Commission, the official watchdog created only three years ago, failed to prevent the care-home abuse because it was so obsessed with its own bureaucracy.
In our panic the pendulum has swung too far the other way, with good deeds being stifled by red tape and fearful officials.
Kevin Coogan, a social worker, took a young man with learning difficulties to watch Manchester United in his spare time. He knew the man loved football and found it difficult to make friends, partly because of a severe speech impediment – but his actions led to a reprimand.
“I think my role as a social worker was enhanced by having a better relationship with this service user,” says Coogan. “But we have moved away from allowing any intuition, trust in professionals or common sense. Goodwill is being banned.”
There seems something desperately sad about a nation so scared of monsters lurking in the depths that it is swathed in permanent fear, to the detriment of those that it is meant to protect.
Some of those I spoke to blame the glut of new regulations. A senior manager with a local authority, for instance, pointed to the new 42-page compliance manual used to guide behaviour of his staff. “In the 20 years I have been working it has become gradually more difficult, but now there is total paranoia,” he says.
“I say to members of my staff that while you are not friends with service users you can still be friendly. But increasingly I am told even this steps over the mark and warned people will face disciplinary charges.”
Others say the problem is not the regulations, but they way they are applied. One insider told me of some people with learning difficulties living together in a small rural village. For 20 years, a neighbour visited each week, taking vegetables from her garden and staying for a chat and a cup of tea – a small spark of normality in their institutionalised world.
Following a high-profile abuse case nearby, the trust running the home decided there needed to be criminal record checks on any visitors to the house. This so upset the neighbour she stopped visiting – and the community lost the company of the one person in their lives who was not paid to be with them.
“We are living in a country where friendship is being denied to people because we have created a system entrenched in suspicion,” says Simon Duffy, director of the Centre for Welfare Reform and a pioneer in assisting independent living for people with learning difficulties.
“Every time something goes wrong there is a clamour for new rules, but the scope of regulation has increased so much we have ended up with this overbearing welfare state. But if the regulators can invade the private lives of disabled people in these disturbing ways, where does it stop?”
Some groups are fighting back. “We end up operating under the radar all the time, which is absurd,” says one trust that does brilliant and innovative work supporting people with learning difficulties. “The trouble is that in the name of professionalism we have been taken over by bureaucracy.”
Even families are ensnared in this new state of fear. The mother of one young man with severe learning difficulties used to go shopping each weekend with her son and his support worker. Astonishingly, a new care provider told her she had to start making appointments to see her son with 24-hours notice, claiming their trips disrupted his regime.
“Something so simple yet life-enhancing as natural contacts with his family are now subject to a set of rules imposed by a misguided care provider and council,2 says an expert familiar with the case. She added that the man, who is unable to speak, showed signs of distress as a result, which led to difficult behaviour and his subsequent assault by a support worker.
This symbolises how over-enthusiastic interpretation of the reams of regulations does more harm than good. But at the heart of the problem is myopia towards people with disabilities – as Dr Duffy says, the system reflects a suspicion over why anyone would want to be friends with someone with cognitive or physical difficulties.
A survey by the charity Scope found a majority of Britons believe most people see the disabled as inferior people, while comics such as Frankie Boyle and Jimmy Carr still think it acceptable to poke fun at them and celebrities bandy around the word “retard” as a term of abuse.
One result is the demeaning of people with disabilities, forcing them to the fringes of society with fewer than half in employment, poverty endemic and far higher risk of being victims of violence. Figures last week revealed a sharp rise in the number of reported hate crimes.
The problems are even worse for those with learning difficulties, who can find it hard to form friendships and often live terribly isolated lives. As a result, there is a rash of “mate crime”, when bullies pretend to befriend them only to abuse them, steal from them and in some cases even murder them.
If even carers are told that forming friendships at work with disabled people is transgressing, it reinforces the idea that such people are abnormal and must be treated differently from the rest of us. After all, which other profession is banned from mentioning their family or inviting workplace friends to a wedding?
The net result is more isolation, more loneliness and as a result, more risk of abuse and bullying. “We are perpetuating this sense of otherness,” says one council official. “We talk about social inclusion and respecting people’s rights but our bosses are so tied up in dogma and red tape we end up patronising and isolating the very people we want to help.”
As one expert who knew people abused in the Winterbourne View care home exposed by Panorama pointed out, they would have been at less risk of abuse if they had more friends - especially among the staff. “Friends would be more likely to blow the whistle,” she said. “Clearly no-one saw these people as human beings or someone would have stopped it sooner.”
One more example of how the best intentions of the state can backfire in the most disastrous manner. It begs a fundamental question about modern Britain: do we really want to live in a country that outlaws kindness, decency and friendship for some of the most vulnerable members of society?
Kenny’s name has been changed to protect his identityReuse content