The Black Stork and the short life of Baby Bollinger

Simon-JarrettSimon Jarrett  discusses a remarkable 1916 American film advocating euthanasia of disabled babies and starring the medical pin-up boy of the eugenics movement.

Quote: The story of the film Black Stork reminds us that debates about the right to live, or indeed the right to die, are nothing new.

Film: The Black Stork, 1916, Jack Lait with Harry Haiselden (University of Michigan Historic Health Film Collection)

In 1915, Dr Harry J Haiselden was chief surgeon at Chicago’s German-American hospital. When he was called from home to an abnormal birth at the hospital early one morning,  he encountered a baby, born to Anna Bollinger, who had multiple physical abnormalities. These included absence of a neck and one ear, defects of the shoulders and chest and a prematurely bonded skull.

In Haiselden’s  opinion he could operate to correct the internal physical defects, but ‘Baby Bollinger’ would remain with significant physical and mental deficits.

Hearing this, the baby’s parents agreed, with Haiselden, that there should be no life-saving operation and five days later Baby Bollinger died.

Haiselden then did something unexpected. He went on a media offensive, not only to justify his decision, but to advocate the legal euthanasia of severely disabled new-borns. He revealed that he had allowed numerous ‘defective’ babies to die during the last decade.

Over the next three years he withheld treatment from, or actively hastened the deaths of, five more babies – each time publicising what he had done to the press. They responded with blanket coverage. Sensational headlines proclaimed ‘He’s going to let her baby die; this woman says “It’s for the best”’ and asked: ‘Does humanity demand the saving of defective babies?’

God’s vision

Haiselden’s next step was even more extraordinary. With Jack Lait, a journalist he had met through the furore about his case, he made a film, based broadly on the case of Baby Bollinger, starring himself as the surgeon ‘Dr Dicky’.

In Black Stork, a man with an unnamed inherited disease marries his sweetheart, despite earnest pleas from Dr Dicky not to do so. The wife becomes pregnant and their baby is born severely disabled. The doctor refuses to perform the operation that would allow the baby to survive, but with physical and mental disabilities.

The mother is at first full of doubt but then God reveals to her a vision of the child’s wretched, tormented future, and she accepts Dr Dicky’s decision. The soul of the child jumps into the arms of a waiting Jesus.

The film came as close as it dared to proclaiming the right of the doctor to play God.

Political support

Black Stork played in mainstream American cinemas from throughout the 1920s (after 1918 it was renamed Are you fit to marry?) and was still being shown as late as 1942.

Reaction to Haiselden’s film, and his beliefs, reflected the polarisation of American opinion on eugenics. He attracted support from the political left and right, and mainstream religion. Many ‘progressives’ supported him in his quest to introduce the ‘right to die’ for severely disabled babies – they included civil rights lawyers, historians, judges, and the Catholic Cardinal of Baltimore.

Some parents voiced their support and asked him to perform euthanasia for their children. Equally there was opposition from across the political and religious spectrum, and from families.

Haiselden was never prosecuted for the killings, or ‘allowed deaths’ as they were known, despite several investigations into his conduct. He was expelled from the Chicago Medical Society, not for what he had done, but for publicising it.

The bizarre story of the film of the Black Stork, and the tragic tale of Baby Bollinger and other babies born under Haiselden’s medical regime, remind us that debates about the right to live, or indeed the right to die, are nothing new. In the febrile atmosphere of the American eugenics era, Black Stork was a film that could inspire both acclamation and revulsion.

Information for this article is drawn from: Martin S Pernick, The Black Stork: eugenics and the death of ‘defective’ babies in American medicine and motion pictures since 1915, Oxford University Press, Oxford, 1996

 

Expert help at the click of a button

A new website aims to make expert information accessible to everyone. Jayne Knight explains why she is launching www.youknow.org.uk

I joined Ling Trust in Colchester 28 years ago. It was a small housing association supporting people with learning disabilities. At the interview I asked where people lived and what they did in the day. I was told, “They live in homes around and they don’t do much. They are too bad for that!”.

When I started work, we all formed the Fast Forwards Tenants group.  Members let other people know they didn’t have to put up with things anymore – just lovely, simple, real life followed with all its joys and sorrows.  I stayed for 25 years, trying to do right by people and thinking everyone else had learned to do the same.

Desperate story

Fast forward to three years ago when I picked up the phone to a woman who told me a desperate story about her battle for her son and all the terrible pain they had been through. I had worked with survivors of institutions but this was the most harrowing account I had heard for a very long time. Weren’t we all supposed to be in a new world of ‘person-centred planning’? Surely this wasn’t happening with all that had been spent changing the rotten systems of yesterday?

Reality started to dawn after hearing more stories, all the same. During all that time when I thought people knew better and had learned the best ways to support people, we had been ignoring the ongoing trek of very vulnerable people going straight into the places we thought had closed down – the treatment units that became people’s new homes and in which many were abused and denied a life just as in the institutions.

Three years of harrowing voluntary advocacy later and what if anything is changing? So many promises and so little action despite some really best intentions. So little information of the right kind. Conspiracies of silence, misinformation, threats and poor practice are still the reality for most people trying to make sense of a terrible world of hospitals, sections, courts, tribunals and, more often than not, nothing happening.

Working with a few others we figured out that one of the things people needed was good, free, readily accessible, 24/7 information and know-how. Too often what they got was partial, threatening, coercive, ill informed – the kind you get when you enquire or plead for help from the authorities. We planned to provide honest, straightforward, life and work lived, expert information from people who really do know, people who care enough to share that information and advice for free in a place where it’s easily accesssible. I searched on the web and couldn’t find that place.

Over the last year I have worked with family carers Gail and Laura to develop a website youknow.org.uk. With the help of our original IT man, John and our new IT providers, Perfect Arc, we have  ‘soft launched’. At the time of writing we have already sent out 37 problem-solving  answers and replied to several phone calls.

So our dream for a one-stop shop for unbiased, free on line advice in social care, health and supported housing is going to be fully launched in April this year. Every day we increase the resources on the site and our number of voluntary advisors are growing. We’ve just started a ‘go fund me’ to develop the site to make it even easier and raise the advertising potential. We will use any money to pay for second to none free advocacy nationally. Our aim to challenge poor care with expert information is becoming a reality. We are a genuine social enterprise with sound business principles. That makes us all very proud.

Our advisors include self advocates Jenny Carter and Andrew Bright as well as lawyers, professional social workers, nurses, psychiatrists, psychologists, housing and welfare rights experts, experts by experience, family members who have advice to offer, voluntary organisation representatives and advocates.

Fantastic work

Many sites offer help but generally in one subject area. We don’t underestimate the fantastic work they do and our aim is to link people to these self directed or family-led sites wherever possible. Working together makes us stronger. I have kept all my links with Ling and now work with another housing association Let’s For Life which has a very positive team ready to get good housing for people with support needs, starting with people coming home from assessment units. Our links with others will make youknow.org.uk much more successful.

Spread the news and advertise to sustain the site. If you want to be an advisor please contact us on admin@youknow.org.uk. If you feel you can pledge £5 to support the site please go to www.youknow.org.uk and click on the donate/go fund me area.

Jayne Knight, Family Advocate, Interim Director Cameron Trust,  MD My Great LifeCIC

Mobile 07940906722

Home office landline 01490430571 and answerphone

Office tel:0162520462870

Max Neill – a great advocate

Max Neill – a great advocate who never dwelt on the issues but on the solutions

Max Neill, one of the advisors to the research team on the Big Society, died on 29 February, aged 49.

Chief Executive of Disability Equality North West Melanie Close paid tribute to Max. “I’ve known Max for over ten years. When I first met him he was the lead for person centred planning and supported lots of individuals with learning disabilities to get the support they wanted in the way they wanted it. Max gave them a voice when planning their future and their support. He also supported many organisations to learn how to do person centred planning with the people they support.

“Max was also a real advocate for ‘circles of support’ ensuring people with learning difficulties had a network of formal and informal support around them – he was so passionate about this, and would speak about it and practice it whenever he could.

“Max was a great advocate for people with learning disabilities. He was an expert in engaging with community members to identify issues and then solutions and sources of support. He would never dwell on the issues, always the solutions.

“When he was diagnosed with bowel cancer, he treated it as another challenge and another opportunity to help people learn about cancer and about dealing with pain and planning for end of life.

“His passion for person-centred approaches and support and the learning he passed on to us all, will be Max’s legacy”.

“I really, really want more work”

My name is Matthew Grenney. I am 19 years old and I come from Portsmouth. I was really pleased to be given the chance to go to Mencap’s  lobby in the Houses of Parliament on  13 January 2016. My MP is Flick Drummond who represents Portsmouth South.  I wanted to meet Flick to tell her a bit about my life and some of the things I am worried about.

Flick really looked after me. As it was a cold day she took us straight through to one of the tea rooms for a chat. I told Flick I really, really want to get more paid work. I’m at college now, doing Steps into Work, but I have only got some agency work, no guaranteed hours. It’s very hard to find paid work and to get good support to do this. We talked about how the Work Programme and big companies haven’t worked for people like me – smaller, local organisations can do this better.

Flick gave us a report of a debate which had happened in the House of Commons the day before. She seemed very interested in helping people get work and talked about how Remploy had closed. She said she is going to organise a jobs fair in Portsmouth.

I’ve had a lot of time in the care system and I told Flick that it’s horrible for people who have to move out when they reach 18. Flick said the government is changing this so that people won’t have to move until they are 21, then this will be increased to when they are 24.  I think this will be much better.

I want to move into a flat soon. I told Flick I am worried about my benefits being cut as I need to have enough to pay all the bills. She said there are no plans to cut my benefits which are linked to inflation.*

I asked Flick if she could help me get a passport – I’ve been trying for 11 years to get one. She immediately said yes, to bring some paperwork to her Portsmouth office. I am excited that I will be able to go abroad for the first time.

Flick then took us out on to the terrace by the Thames, where we took a picture, then into the House of Commons, where we got to see a debate. Flick explained some of the history of the Palace of Westminster and I stood where Nelson Mandela and Queen Elizabeth have given speeches.

It was good to meet Flick. I felt she listened to me. I will invite her to meet me where I currently live and will go and see her to get my passport sorted out. But I am really not sure if the government will listen.

*On the way home I looked at how the Work Bill might affect me if I found paid work but then had to claim ESA if it didn’t work out – I would be £30 a week worse off.  This makes it difficult when thinking about work and how I will pay bills.

 

Meeting MPs: people and potholes

My local MP, who I have lobbied many times, tells me he gets a lot of letters about potholes but hardly any about social care or the benefits system. This is quite extraordinary, bearing in mind the cuts to both. When it comes to the voting season, what will our elected representatives pay attention to?

There is a lot of appetite and interest amongst the people I support to get their voices heard and a seat at the table when planning services and making decisions.

It was fantastic to see Mencap organising a mass #hearmyvoice lobby and join people who had travelled from all over the country to meet their MPs at the Palace of Westminster.

Matthew’s MP, Flick Drummond, looked after us really well. We later heard that 17 people had travelled from one region and their MP hadn’t turned up.

Flick told us about a debate she’d spoken at in the House of Commons the day before on employment and people with disabilities. Reading the notes from the debate it was clear we’ve not made much progress on employment since the days of Valuing People over 15 years ago. We’re wasting time, resources and energy and need to inform the debate on what does work (local connections, a benefits system which truly supports people to enter and stay in employment) and what doesn’t (the Work Programme ‘parking’ people and putting in disincentives such as cutting £30 a week from the work related groups who receive Employment & Support Allowance).

The Aldingbourne Trust is an active member of the Campaign for a Fair Society and founder member of Learning Disability England. I am excited at the development of a stronger voice for people who have learning disabilities and will continue to back this essential movement to make sure people who need support speak from their own experience and shape decision making. Gary Bourlet and the work of Learning Disability England is an inspiration.

Let’s all do our part to make sure people get as much airtime, letters, meetings, emails and messages as potholes!

For information on the Campaign for a Fair Society please visit www.campaignforafairsociety.com.

Sue Livett, CEO, Aldingbourne Trust

Councils disregard the Care Act at their peril

It has hit the news recently that disability campaigners have reported Norfolk County Council to the Care Quality Commission for allegedly ‘disregarding’ its statutory duties under the Care Act 2014. Belinda Schwehr looks at the consequences for authorities of not taking these duties seriously.

Norfolk’s Equal Lives wants the providers’ regulator to investigate what it claims are ‘systemic’ failures in care and support planning, citing savage cuts to existing clients’ personal budgets.

There was an early warning of this risk of unlawfulness, with the Clarke case in April 2015, even before the 2014 Act was brought into force.

Mr Clarke, the claimant, a man in his 20s, with severe epilepsy, mental health and behaviour that was challenging, had become ‘ordinarily resident’ in a tenancy in the London Borough of Sutton.

 

At the time he moved the law was that the new council became responsible for the claimant’s care, in place of the old council (Enfield) even though the old one had funded the move into the supported living setting and had voluntarily paid the specialist epilepsy provider’s fees.

 

Sutton did not carry out an assessment until five months after the old one ceased to be willing to pay. Sutton concluded that the claimant’s care could be provided in a non-specialist manner.

 

Professional view

Many providers have been required to offer generalist and specialist rates to councils in re-tendering exercises only to discover that councils are the decision-makers as to whether their clients ‘need’ specialist care – unless providers refuse to admit those clients to their homes, or on to their ‘books’, without their own professional view of the needs being accepted.

 

The Sutton care plan process costed the ‘need’ at £357 per week compared with the care package the old council had been content to fund for £1,300 per week.

Sutton refused to continue to contract with the old council’s provider, and the young man got an interim injunction from the Court, to prevent cessation of the package in what had been his home for over four years.

 

The specialist provider’s evidence about its provision included its bespoke alarm system, its staff trained in all emergency medications administration, and highly skilled management of prolonged seizure activity, with access to 24-hour support and monitoring, including waking night staff.

 

Evidence from a specialist neurologist and an epilepsy nurse documented active epilepsy, night seizures and risk of status related to stress and any non-compliance with medication; injury from falls and one or two unpredictable tonic clonic seizures a month.

 

During the pre-trial period, the council raised the allocation amount a little and said that Mr Clarke needed “Waking night support for three nights per month, in anticipation that your client will have up to three seizures a month during the night”.

 

Instead of accepting that the provider’s business model of charging by the week was up to the provider, the council purported to assess as an appropriate response to the above profile of need, the need, or the market rate cost, for the following TIMED services:

  • Support for three hours for seven days a week to assist him with taking medication, meal preparation, eating/drinking and showering and bathing
  • Support for three hours a week to assist him with cleaning, budgeting and managing bills and correspondence.

 

In other words, it treated the assessment in the same way as it would have looked at the care of a person who was coping in their own home, but who needed input for specific inputs – instead of acknowledging that the only reason a person with Mr Clarke’s level of needs could feasibly live outside of registered residential care was because of the wrap-around access to supervision and 24-hour support system able to be called upon, ‘beneath’ the specific care inputs needed, on top.

 

Direct payment

The new council ultimately purported to allocate money for these needs at a level of £661 a week as a direct payment without explaining how it evaluated the claimant’s needs to produce this figure.

 

Although it had had available to it, the opinions expressed by the claimant’s consultant, GP, epilepsy nurse and care provider, it effectively relied on the judgement of a social worker who did not claim to have any medical skills or qualifications.

 

In evidence, the specialist provider said: “A waking night’s staff allocation for three nights a month would put Mr C in danger, as it is nonsensical to suggest that assistance with medication is only needed some of the time. Additionally, his seizures are not limited to nights. They are ‘whilst sleeping’. This puts him at risk of death. So, he could easily (and often does) have a seizure whilst sleeping in the morning or early afternoon. That is why he needs 24-hour care. Sleep-in support would not be able to respond to a seizure in time.”

 

The council maintained that another provider, from whom there was no evidence, would be able to meet all needs, if Mr C moved from his tenancy, to another address.

 

The judge quashed the decision of the council, ordering it to re-assess the man’s needs, lawfully.

 

“It is important to keep in mind that this is a case in which the claimant has been in receipt of these services for a number of years, in circumstances in which his medical team and care providers have made it clear that his needs have not decreased. It is to be distinguished from the type of case in which a claimant is seeking services which he has not had in the past.

 

“The explanation as to the basis upon which three waking nights care a month are included within the package as offered in the hearing before me simply does not make sense and does not address the needs identified in the reports from the medical and other professionals.

 

“It is also the case that the claimant has a tenancy at his current placement which has been his home for more than four years and there has been no care plan produced from the proposed non-specialist care provider.”

 

In legal terms, the judge found that the decision was unlawful because relevant circumstances had been ignored.

 

“…the decision by the defendant failed to give appropriate weight to obviously relevant material and relied excessively on the non-expert view of a social worker in face of a wealth of evidence to the contrary from appropriately qualified and experienced experts. I find that those opinions have not been given sufficient weight in the decision-making process”.

 

Budgetary pressure

Significantly, for many people facing their first Care Act reviews at a time of extreme budgetary pressure, it was also accepted that article 8 [the human right to respect for one’s private and family life and one’s home] was also engaged.

 

“I am satisfied that the defendant’s decision that the claimant should be expected to move from his home at which he has a tenancy, to a placement of the defendant’s choosing, in circumstances in which no care plan has been provided by the proposed non-specialist care provider does amount to an unlawful interference with the claimant’s rights to respect for home and private life.”

 

Automatic right

This does not mean that people have an automatic right to remain in their own home no matter what the cost to the public purse. If the council offers a care home, and it is refused, with mental capacity the council is discharged from its duty to meet the needs. But this is not often imposed on young, active clients, and the duty to meet needs cannot be dependent on moving from one tenancy or owned home to the same sort of accommodation, just to suit the council.

 

Additionally, in this particular case, there was no evidence that the alternative would even meet the needs, which meant that the council could not show that it had conscientiously balanced the individual’s rights against the economic implications.

 

The Care Act guidance requires the same sort of balancing (see para 10.27). All reviewing staff and assessors, care planners and Panels, in councils receiving people from elsewhere into their area into ordinary accommodation under the continuity provisions – and those with clients moving out of area, to more expensive areas, under the ‘continuing ordinary residence’ provisions – clearly need to take account of the principle in this case.

 

The author knows of at least one other case where the responsible council has offered a care package of approximately £700 a week, for a man going into supported living with a new provider, and has suggested that the difference between that and the provider’s fee of £1,000 a week should be seen as a top-up (ie for wants, not needs). That offer has been made without the council’s taking the trouble to explain how £700 even relates to the assessed eligible needs of the gentleman in question, let alone meets those needs, by making the man able to achieve in the relevant domains/outcomes. The Court of Protection became seized of the case, instead of the Administrative Court, where a judicial review would normally be commenced, because the gentleman needs to be deprived of his liberty, to be properly cared for; and hence the Court of Protection’s approval needed to be sought.

 

It is hoped that the memory of the Clarke case will be enough to ensure that the case never needs to return to the Administrative Court for determination by a judge applying public law principles to the approach of the cash-strapped but ill-informed council.

 

Lessons from this case

When a person’s needs are reviewed, the council should provide a care plan to show how what they propose meets identified needs appropriately. They can’t just identify a sum of money with no evidence of how it will do so.

 

They must also show how they have considered relevant circumstances in taking a view, including relevant specialist assessments of need.

 

Moving a person from a home they have occupied for some time to a placement chosen by a council where no appropriate care plan has been provided may go against Article 8 of the Human Rights Act – respect for one’s private and family life.

 

The duty to meet needs cannot depend on moving someone from one tenancy or home to similar accommodation to suit the council.

 

Councils must conscientiously balance the individual’s rights against the costs to their budgets. In carrying out reviews under the Care Act councils need to keep this balance in mind when a client moves to a more expensive area.

 

Belinda Schwehr

Care and Health Law

Come out of your comfort zones and work alongside people

Rosemary TrustamDespite the pressures from cuts, Rosemary Trustam heard some inspiring talks urging delegates at the H&SA winter conference to build on the good work some agencies are doing

Why was no one shocked at a recent diversity conference that no mention was made of the biggest minority – people with learning and other disabilities? Independent journalist Ian Birrell asked this question in opening Housing and Support Alliance’s (H&SA) winter conference which he chaired. People can’t overcome the increasing barriers to employment, rising hate crime, social and domestic isolation and ostracisation unless they are part of their communities, he said.

Ian has a 23 year old daughter with a complex and profound disability who has a good network of support. Referring to the Justice for LB campaign, he suggested challenging behaviours are rather the result of, not a reason for, Assessment and Treatment Units. Despite a challenging context, he said, there are many good people in local authorities, charities and the community building good things, and today is about bolstering that work.

Pages of forms to ‘prove’ you’re looking for work, jargon-filled letters and a lack of disability friendly work environments stop people getting work, said Gary Bourlet of People First England. People want to work but find themselves without help stuck in poorly repaired bedsits. People need support with jobs, housing and to be part of their community. The fight for the rights of disabled people and the retention of human rights laws should continue, he said.

People have to come out of their comfort zones and organisational and professional boundaries and come together alongside and behind people and families urged Alicia Wood, CEO of H&SA.

Tom Noon of Cordis Bright warned of darker days to come before there’s any change in government, and fewer people would get social care funding in future. Steve Broach, a barrister with Monckton Chambers, pointed out that the law trumps local authority policies and lack of resources. Nevertheless, Tom Noon’s figures looking forward  at changes in need were a sobering reminder of the enormity of the planned cuts and the pressures from an increasing ageing population and the ‘living’ wage.

Under the Care Act, Steve Broach reminded the audience, disabled people still have the right to have their eligible social care needs met in full, regardless of the cost, although if there are two ways of genuinely meeting the person’s needs, the state can choose the most cost-effective way. If there is a legal duty to provide – for example – the personal care a disabled person needs to lead a dignified life, then the state can be made to provide it.

He cited the Human Rights Act as a powerful weapon, illustrating this with two people fronting the ‘Act for the Act’ campaign – Jan Sutton, a disabled woman whose use of it resulted in a package of care supporting her to live with dignity and Mark Neary where it helped get his son Steven home. He said the UN Convention on the Rights of Persons with Disabilities (UNCRPD) is being given ever greater weight citing how it helped find unlawful discrimination against disabled children in hospital who lose their disability benefits after 84 days.

Rights are even more important as disabled people are under sustained attack from government policies that cut the specific fund to support independent living, undermine entitlements to social security, reduce access to legal aid and by reducing their budgets make it virtually impossible for councils to comply with their statutory duties. He suggested legal challenges may soon come from local authorities without enough money to comply with their legal duties. Already two councils, whose eligibility criteria were previously critical only, went to court and once the court granted permission for the claim to proceed, the government backed down and provided funding.

Steve also reminded people that legal aid is still available to bring judicial review challenges to secure people’s rights. The new right to advocacy under the Care Act, was found by Community Care magazine (1) to be very underused, even in Reading council which says it is actively promoting it.

“It is unacceptable for Parliament to pass laws and the government to sign treaties creating new rights, and then for funding to be cut to make it impossible for local bodies to realise them”, he said. Over the next few years we will need to use the law to enforce the extensive rights disabled people now have, he suggested. By bringing cases to show the law isn’t being respected, the funding needed must follow – that’s what the rule of law requires.

“ ‘Independent living’ seems to be packaged into a largely mechanical exercise involving budget, staff and space, without giving life any meaning”, said Sarah Ryan, Connor Sparrowhawk’s mother. Even amongst pockets of good practice, she sees lots of learning disability jargon, little talk of aspiration, hope, love, imagined futures or work, but instead, ‘supported non lives’.

She challenged providers and commissioners to, “chuck away the learning disability lenses and engage with the people you work with as people, and if budgetary or bureaucratic constraints prevent them from doing this right, they should shout about this, just as if their family member was leading a state sanctioned impoverished life”.

Despite the government’s sign-up to the UNCRPD principles of independent living and inclusion(2), its statements of intention have weakened from ‘determined to deliver’ in Valuing People Now 2009 (3) to an ‘aim for people…. to live independently when possible’ in 2015 No Voice Unheard No Rights Ignored(4), noted Chris Hatton of the Centre for Disability Research at Lancaster University.

Independent living should be about being the author of your life, he said, and yet a lot of money is spent stopping independent living – on residential care and inpatient services; supported living with high rents and tied support; benefits to stop people working; personal budgets not giving people control over what they spend it on and not trusted to spend it well – and health services that kill people. People with learning disabilities seem to be exploitable commodities who rarely see or control most of this, and are at the mercy of the care markets. He suggested resources could be better spent and that we can’t afford not to support independent living.

Chris produced figures to show that inclusion is going backwards: fewer children are in mainstream schools, only 6 per cent of adults in paid work, mostly under 16 hours, people are disproportionately sharing or living with families compared to the general population and personal budgets increasingly managed by providers. With changes in eligibility for support, he sees protection being withdrawn from vulnerable people who are left unprotected ‘outside the stockade’, unemployed, ill or in trouble with the law, suggesting 70,000 people with learning disabilities are now not known to services but will add to costs when they turn up at A&E or prisons.

His challenge was for the state to stop cost-shunting, start funding as a whole and give long-term guarantees; put people and families in charge; stop conditionality and introduce enforced rights (as set out in the LB Bill); persuade local authorities that bigger isn’t always better and small is beautiful; for homes not units; people not systems; and start independent living, learning from each other about what works.

Sally Warren from Paradigm saw hope in ten agencies committed to challenging themselves where they see an  ‘integrity gap’. She asked people to imagine how they would feel if they never got out to see their friends, had to share with three people they can’t stand, and if someone they didn’t know did their personal care….. “If it’s not good enough for us, it’s not good enough for people with learning disabilities”, she said.

Helping people to have an ordinary life is about having life’s ups and downs, about their freedom to have support when they need it, the opportunity to learn from mistakes, to choose where and with whom they live – the basic human rights we all take for granted.

Laura Broughton illustrated this with her experience of Choice Support’s service which helped her move to her own flat. She now loves it but it took five years to get used to. She has 20 hours per week to help with domestics and to get out and about with her seizures supported by assistive technology, Mum on alert and a smart alarm to remind her to take he

The enduring values of the Rathbone family

Rathbone in Manchester* have joined the four London charities – The Elfrida Society, Elfrida Rathbone, The Rathbone Society (Lambeth) and Generate (Tooting) – to mark the Elfrida Centenary. The four London charities all work with young people and adults with learning disabilities. Rathebone Manchester works with young people in education and vocational training across the UK.

It’s interesting how the different arms of Elfrida’s early work – learning disabilities and education – have influenced the origins and development of the different charities’ work.

The Rathbones were a Liverpool family of non-conformist merchants and ship-owners engaged in philanthropy and public service. Those values have clearly been passed on through the generations. In the last issue (Legacy of a remarkable woman, p. 5)  I described  the work of Elfrida Rathbone and her cousin Lilian Gregg in pioneering education for children deemed ‘ineducable’.

A Liverpool cousin, Eleanor Rathbone, was one of the first women magistrates and in 1929 became an independent MP. She campaigned for social and political reforms in housing, votes for women and for family allowances to be paid directly to mothers.

Despite hard times these charities remain vital and committed to their values. They are keeping their high ambitions for their beneficiaries. Like Elfrida they are inclusive and create opportunities which make the difference to people’s lives.

The charities’ plans are currently focused on the theme of inclusion to which they are all committed. They will work with their beneficiaries to develop this year’s AGM activities in her name. Funding is being sought to create a lasting heritage archive to celebrate Elfrida’s work.

On 2 November the four London charities and their Manchester member, with their members, will be celebrating Elfrida’s heritage at the House of Lords. The event will be sponsored by Baroness Hollins.

* www.rathboneuk.org/Pages/home.aspx

 

Rosemary Trustam

Desirée and her animal friends

Simon Jarrett explores the ‘scientific’ world of the French writer Emile Zola (1840-1902)
The Conquest of Plassans (La conquête de Plassans) Emile Zola, 1874
Abbe Mouret’s Transgression (La faute de l’abbé Mouret) Emile Zola, 1875.

Emile Zola was a French writer who, at the end of the 19th century, wrote a series of 20 novels tracing the lives of two families, the Rougons and the Macquarts. These books became known as the Rougon/Macquart cycle, the most famous of which is Germinal, (1885), a grim story of deeply impoverished and brutalised mining families in northern France.

Zola was acutely interested in the new theories of natural science, psychology and psychiatry in his time, in particular ‘degeneration’ theories about hereditary madness, alcoholism, disease and disability.

The Rougon family were ‘respectable’ and highly moral, the Macquarts disreputable, promiscuous and often alcoholic. Zola was interested in the consequences for the two families of coming together and producing (illegitimate) children, and how this would play out over the generations. He saw himself as a literary scientist, observing and tracking the influence of heredity, environment and events on the characters he had created and brought together.

Child of nature
The belief of that time was that degenerate families with poor morals and ‘nervous’ minds would produce immoral, diseased, or disabled children. In one of the early books, The Conquest of Plassans, Desirée, an ‘idiot’ teenage girl, is the first character we meet.

‘Desirée clapped her hands. She was 14 years old and big and strong for her age, but she laughed like a little girl of five. “Mother! Mother!” she cried, “Look at my doll.”’

Desirée is different – big and strong for her age, but acting younger, a child of nature whose friendships are not with other people, but with dolls, animals and birds. As her mother says,
“Poor child… she can’t even do any needlework…she is fond of animals and that is all she is capable of”.

The irony of the novel is that as Desirée grows older she becomes tall and plump and spends her time contentedly gardening and keeping chickens and animals, while her family become more and more troubled and unhappy. As the whole family, including Desirée’s mother, sinks into madness and depression they reach the point where they cannot bear the sound of her laughter. Desirée has no friends apart from dumb animals, but it is she who is happy.

Without human friends
In Abbe Mouret’s Transgression, Desirée has become a grown woman looking after the farm animals. Still without human friends, she understands and loves the animals better than anyone else, and is more skilled than others at looking after them:

“… she understood their language far better than that of mankind, and looked after them with motherly affection… she seemed to know their good or their evil character at a glance…she astounded those to whom one chicken was exactly like any other”.

The animals love her as much as she loves them, and become upset when she leaves them. Once again her robust cheerfulness provides a direct contrast to the nervous depression and moral transgressions of her family.

Zola’s ‘scientific’ method shows us several classic examples of late 19th century thinking about ‘idiocy’: the happy, innocent ‘idiot’; the degeneration of families through ‘poor breeding’; and the unnerving space occupied by the ‘idiot’ person in some 19th century minds, somewhere between the human and the animal.

Are today’s attitudes any better than those in the past?

In the last of the series ‘Meet the Historian’ Community Living’s Arts Editor Simon Jarrett explains how a startling discovery in a hospital file set him off on a historical journey.

As a young nursing assistant in the 1980s, I began work at a small, all-male ‘mental handicap’ hospital. Many of its elderly patients had been admitted as children, in the 1920s and 1930s. I read through the file of G, an elderly man who had lived on the ward for over 65 years. The notes of his admission, aged six, began: ‘G is a bat-eared cretin.’ I recoiled at the harsh and degrading language, used to describe a young child entering a strange and forbidding institution. I wondered where it had come from. I wondered also why the medical terms of sixty years earlier were now the language of abuse and insult.
During the sixty years G had lived in the hospital life outside had changed dramatically. There had been the General Strike, the Great Depression, World War II and the Holocaust, the birth of the NHS, the Cold War, the Swinging Sixties, the Vietnam War and Thatcherism. Yet in all that time life for him and the other men on the ward (or ‘boys’ as they were known) had changed very little. As the world had changed outside, George and his fellows had grown old following the same routines; eating the same three stodgy meals a day, bed at 7.30 each night, up at 6.30 each morning, passing the time each day. It was a strange Peter Pan existence, never allowed to progress or develop – no wonder they were called boys. G came into the world ‘a bat-eared cretin’ and was never allowed to be anything else. Why?
Lack of curiosity
This affected me, and working in learning disability services in one way or another over the next thirty years, I was baffled by the lack of historical curiosity of the many who worked in the field. What we were doing now was always the best way. The past was wrong, but somehow we always believed we had got it right in the present. We went all the way from ‘Better services for mentally handicapped people’ to ‘Valuing People’, without self-doubt, always certain that this time we had got it sorted.
Which is why I became a historian. I wanted to find and make known the voices of the past, to inform the present. We were beginning to learn a lot about the asylums. But they only began in the 1840s. What about the thousand years of history before them? How did people live then, and how did other people see them? My PhD is about the eighteenth century. It was an age in which those known as people with learning disabilities today were called ‘idiots’ – harsh to our modern ears, and yet this may have been a more enlightened age than ours. People characterised as idiots worked, married, were well-known in their communities. They were, for the most part, accepted for who they were, allowed to be who they wanted to be.
A more enlightened age?
The past may have something to teach us here. Our modern jargon talks about ‘accessing the community’. In the eighteenth century no one needed to ‘access’ a community they were already part of. Being at the heart of community is the historical norm. It is the 140 years of the asylum, and the strange no-man’s land of services we have created today, that are the anomaly.

How exclusion affects the health of people with learning disabilities

Female researcher

A project by the Centre for Disability Research at Lancaster University aimed to find out how neighbourhoods and community participation are linked to the health of people with learning disabilities. Chris Hatton and colleagues report on their findings.

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Summary
Study title: Perceptions of neighbourhood quality, social and civic partnership and the self-rated health of British adults with intellectual disability: cross sectional study – http://www.biomedcentral.com/1471-2458/14/1252
Aims: To examine the relationship between the social connections and community participation of people with learning disabilities and their health.
Methods: Secondary analysis from Understanding Society, a new longitudinal study focusing on the life experiences of UK citizens, focusing on the experiences of a sample of people aged 16-49 with learning disabilities.

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Research has shown that people with learning disabilities die significantly earlier and have more health problems than the rest of the population. Emerson & Hatton, 2014 (1). This, combined with failings in health services and increased attention to the human rights of disabled people, has led regulatory bodies and governments to stress the importance of reducing the health inequalities experienced by people with learning disabilities. Department of Health, 2007; Parliamentary and Health Service Ombudsman and Local Government Ombudsman, 2009 (2).

Despite some research looking at poverty, hardship or adversity to account for the poorer health of people with learning disabilities, few studies have looked at the relationship between either neighbourhood quality or social networks and people’s health. This is odd because we know from general population studies that people with closer and more extensive social networks, and people who report feeling more connected to their local community and/or live in more supportive neighbourhoods tend to have better health. Murayama, Fujiwara and Kawachi, 2012 (3). There is also evidence that people with learning disabilities often have restricted social networks and live in less supportive neighbourhoods, e.g Amado et al, 2013 (4).

The literature on the social networks of people with learning disabilities has reported positive associations between better health and more contact with friends with learning disabilities, being in paid employment, and greater participation in community activities. Emerson & Hatton, 2008 (5).

The aims of this study were: to describe people’s experiences of neighbourhood quality, and their social and civic participation; to estimate the strength of the relationship between these experiences and self-rated health among British adults with and without learning disabilities; and to take account of any potential effects due to socio-economic disadvantage, perceived neighbourhood quality and civic participation.

Findings
After adjusting statistical results to take account of group differences in age, gender, having children and socio economic disadvantage, it was found that people with learning disabilities were less likely than non-disabled people to report living in positive neighbourhoods, and of feeling closely engaged in the life of their communities. Reasons they gave for not going out socially tended to relate to a health condition, illness, impairment or disability, or because they had nobody to go out with. More positive perceived neighbourhood characteristics and higher reported levels of social and civic participation (except for membership of community organisations) were associated with more positive self-rated health for both people with learning disabilities and the general population. For people with learning disabilities, more positive self-rated health was found to be associated with younger age, socio-economic advantage, being employed for 16 hours or more each week, and feeling safe outside in the dark. There was also a strong association between being able to access community services and self-rated health scores.

Despite its limitations, the study results indicate a number of important things:
(1) British adults with learning disabilities have less favourable perceptions of important neighbourhood characteristics and lower levels of social and civic participation than their non-disabled peers;

(2) favourable perceptions of important neighbourhood characteristics and higher levels of social and civic participation are associated with more positive self-rated health for adults with and without learning disabilities;

(3) for adults with learning disabilities this is particularly the case with regard to employment and social contact with friends. These findings support previous studies showing the potential importance of contact with friends and paid employment to their health.

Conclusions
In addition to socio-economic factors, this study concludes that social exclusion has a significant impact on the health of people with learning disabilities, especially those with less severe learning disabilities. People with learning disabilities living in neighbourhoods where they do not feel safe and/or they feel excluded, and where there are few opportunities for community participation, may suffer poorer health. References
1. Emerson E, Hatton C: Health Inequalities and People with Intellectual Disabilities. Cambridge: Cambridge University Press; 2014.
2. Parliamentary and Health Service Ombudsman and Local Government Ombudsman: Six lives: the provision of public services to people with learning disabilities. London: Parliamentary and Health Service Ombudsman and Local Government Ombudsman; 2009.
3. Murayama H, Fujiwara Y, Kawachi I: Social Capital and Health: A Review of Prospective Multilevel Studies. J Epidemiol 2012, 22:179–187.
4. Amado AN, Stancliffe RJ, McCarron M, McCallion P: Social Inclusion and Community Participation of Individuals with Intellectual/Developmental Disabilities. Intellect Development Disabilities 2013, 51:360-375.
5. Emerson E, Hatton C: Socioeconomic disadvantage, social participation and networks and the self-rated health of English men and women with mild and moderate intellectual disabilities: Cross sectional survey. Eur J Pub Health 2008, 18:31-37.

Further reading
Department of Health: Promoting Equality: Response from Department of Health to the Disability Rights Commission Report, “Equal Treatment: Closing the Gap”. London: Department of Health; 2007.

Key Messages
• Poorer health amongst adults with learning disabilities may in part be due to where they live and to lower levels of social and civic participation.
• Living in neighbourhoods that exclude people and offer little opportunity to engage in the life of their community, is linked to people with learning disabilities suffering poorer health.
• The study highlights the potential importance of contact with friends and paid employment to the health of adults with learning disabilities

Health and social care integration – how will it work?

At the Adult Services National Commissioning and Contracting Conference Rosemary Trustam was encouraged to hear about efforts to bring the best to bear on issues despite the looming financial crisis.
‘Never doubt that a small group of thoughtful committed citizens can change the world – INDEED it’s the only thing that ever has” (Margaret Mead)’ .

This was the message from Ray James President of the ADASS at the annual Adult Services National Commissioning and Contracting Conference and perhaps exemplifies such a group of thoughtful committed people – commissioners who genuinely want the best. In opening the conference Ray James urged remaining open to people receiving services and co-production with stakeholders. Relationships not structures were the answer. He said: “Providers are our friends – many bring a depth of knowledge and experience”. Later Martin Quinn CAT Consulting highlighted the EU procurement rules which permit ‘suppliers to be involved in design and terms’. This is a positive message to many good values-driven providers, frustrated by the lack of dialogue to use their expertise to influence commissioning.

Ray James acknowledged the very real sector pressures given the fall in resources, noting providers going out of business/withdrawing from unprofitable work. Quoting Martin Green, Care England, he said, “Without adequate funding to pay for the national living wage, the care sector is at serious risk of catastrophic collapse” He also highlighted quality pressures, with 41% of community-based adult social care, hospice and residential social care services inspected by CQC since last October judged inadequate or requiring improvement. (CQC Board Paper Sept 2015). Acknowledging the huge contribution of social care frontline staff, he made a plea for them to be ‘paid, trained and valued in a way that is consistent with the quality of service society rightly expects of them’. Given the growing difficulty in recruitment, highlighting some specific problems in affluent areas with more competition for jobs, he suggested more engagement of local politicians. He said banks and lenders are waiting for greater certainty about funding for the minimum wage.

Good commissioning he said needs a fair cost of care with market shaping and balance, a collaborative approach to quality and a strong sustainable, high quality, vibrant market that delivers choice & control, that meets individual improved outcomes and upholds individual rights, referring to the Commissioning for Better outcomes toolkit (1).

His vision is of an integrated service across health, social care and other public services, especially housing, with personalised services co-produced with and for local people, their families, carers and communities – underpinned by a focus on individual wellbeing. “More integration is the right thing to do but we’d be deluded if we think the very marginal savings from health and social care integration would answer the financial problems“, he said. The nine integrated personal budget pilots need to design pathways for individuals not “obsess about structural reform” as what makes the difference is relationships.

He suggested that elected members should become more interested in providers’ spend in the local economy – about sourcing local labour, apprentices and sustainability. Price concerns should shift to a more rounded look eg consider are providers helping to nurture the future workforce? As Director of Health, Housing and Adult Social Care at Enfield Council, one of the few authorities with a gold accreditation for Making Safeguarding Personal (MSP) he showed some evidence of progress. Safeguarding has a more integrated model with 50 local volunteer quality checkers providing feedback on services to a Dignity in Care panel; good relations between LAs, CQC, police, CCG, families, providers..; teams randomly sampling safeguarding cases; an independent chair who plays an active role; and commissioners who consider safeguarding issues.

He acknowledged the poor progress in getting people out of assessment and treatment centres under the Transforming Care initiative. However whilst there are barriers of funding and long run provision, he felt the single determinant of making it work is the hearts and minds of local commissioners .
He said the ADASS is trying to keep the door open with Government whilst continuing conversations about the funding crisis. He saw a growing pressure from more responsible journalists; providers representing their issues directly; CQC’s symposium with major providers; and the ADASS and DOH saying there must be a clear settlement for Local Authorities.

A workshop that particularly picked up on co-production and relationships was that presented by Anthony Sadler from Wakefield council and Sian Lockwood OBE Chief Executive of Community Catalysts. Wakefield council recognised that public and local services can’t deliver alone, and that services were not engaging with communities properly. Community Catalysts were asked to help them talk to communities differently and see how it could work. Building on Wakefield’s Connecting Communities programme focusing on decreasing hospital places and increasing community based services, and the three locality prevention/early intervention hubs, they set up a multi-agency cross sector strategic partnership chaired by the Director of Social Services with Public Health, the CCG, Economic Regeneration and Nova (3rd sector infrastructure group), a very positive group motivated for change and inclusion.

Community Catalysts started by researching what existed by talking and listening to local people, helped with local connections by the Wakefield community team. They looked to identify both key people and ‘anchor organisations’ – those neighbourhood key community run places that local people rely on eg community centres, as building on these makes better strategic sense.

They identified two very different local areas of Havercraft and Rye Hill, an area with a high level of deprivation with strong involved ward elected members and Knottingley which included a large estate funded by Big Lottery with £1m over ten years. In Knottingley, there was a lot of disconnected activity and waste as groups worked independently. Small grants were given out by the mining charity and others by businesses out of corporate responsibility, but this wasn’t coordinated. Local people were desperate to join it all up and there found some amazing people. By bringing people together, they could bring resources together, eg. the Community centre manager Holly and the Pastor found that Holly had money to train while the Pastor needed training for his volunteers.

People were fairly cynical at first feeling consulted to death with no obvious result so Community Catalysts spent time really listening and building confidence that action would follow. Some had previously felt patronised and that their abilities hadn’t been recognised. “People think as I have problems I haven’t anything to offer’’.

“When people not used to speaking out are heard by people not used to listening then real change is made”. John O’Brien
They learnt what worked and what didn’t eg a public health investment in a mental health community connector resulted in a good scoping exercise, but lack of involving community groups meant they were flooded with complex people beyond their capacity and skill. Positively, they learnt people cared and wanted to make a difference, about older people socially isolated; a need for kids to have somewhere to go and about those with mental health and disabilities.

There were great examples of people working together. When the Post Office closed, the Methodist church took over and fund-raised, knowing older people would struggle and had a food bake. Sure Start closed and a parents forum formed to replicate some of this and ran a community picnic which gave them a buzz and confidence. Havercraft Derby and Joan club used by 70 older people was often the only time they got out. The woman running it had sourced transport using a community bus, but when this grant was cut she personally paid for a taxi for people to get there. Because the Local Authority doesn’t know what is happening in the community, it isn’t aware of what a little money can do.

A community centre in Knottingley funded by Big Local had a dynamic manager keen to become a self sustaining business which could become an ‘anchor organisation’. A GP surgery had a practice manager trying to do outreach and run luncheon clubs, but the community felt negative about the surgery, so the Catalysts helped facilitate discussion. The strategic CCG links to the GPs helped this.

From their findings, the project plans to build community assets through such as developing the new relationships, identifying and supporting a network of community anchors and enabling stronger links between the community health and social care, as well stimulating enterprise and social entrepreneurs and linking adult social care into this.

Alex Crawford Deputy Head of Commissioning and Planning, UH Bristol NHS chairing had made sporting memories a theme throughout, and we heard from Tony Jameson-Allen of the Sporting Memories Foundation using a shared interest in sport to connect people in communities with dementia, depression or who are just lonely. This particularly helps men who if on their own or isolated through their illness, often don’t have networks. (www.sporting memoriesnetwork.com)

Other keynotes included Albert Heaney Director of Social Work for Wales and Steven Pleasant Chief Executive of Tameside MBC outlining the issues and challenges for Health and Social Care Integration in Wales and Greater Manchester and Colin Angel from UKHCA on “Sustaining the Market for home care” as well as a comprehensive range of workshops including Laing and Buisson’s work on the serious underfunding in residential care.

Whilst the looming financial crisis in care is not denied, it was encouraging to find such efforts to bring the best to bear on the issues and to hear the emphasis on relationships and working together.

Some of the presentations can be found at http://www.psconferences.co.uk/presentations/oct-2105/

Reference
(1).http://www.adass.org.uk/policy-documents-commissioning-for-better-outcomes/

Who has failed to protect children from sexual abuse?

Kate Snowden explains how the Independent Inquiry Team will approach its wide-ranging investigation into child sexual abuse

The Independent Inquiry into Child Sexual Abuse will investigate whether public bodies and other non-state institutions have taken seriously their duty of care to protect children from sexual abuse in England and Wales. It will identify institutional failings where they are found to exist. It will demand accountability for past institutional failings. It will support victims and survivors to share their experience of sexual abuse. And it will make practical recommendations to ensure that children are given the care and protection they need.
The Inquiry is independent of the government. It is led by Hon. Lowell Goddard DNZM who is supported by a panel, a Victims and Survivors Consultative Panel, and other expert advisers.

The independent inquiry into child sex abuse was officially opened on the 9 July 2015 by Hon. Lowell Goddard DNZM. The inquiry aims to look at current and also non-recent incidents of child sex abuse. The term ‘non-recent’ is used rather than ‘historic’, to highlight that while the abuse may have ended, the impact of the abuse is still likely to be experienced to this day by the individuals and families affected by child sex abuse.

It is predicted that the inquiry will be completed by the end of 2020. There are to be yearly reports and an interim report in 2018 which will be available for everybody to read.

The inquiry will investigate a wide range of institutions including;
•local authorities
•the police
•the Crown Prosecution Service
•the Immigration Service
•the BBC
•the armed forces
•schools
•hospitals
•children’s homes
•churches, mosques and other religious organisations
•charities and voluntary organisations

The inquiry aims to identify where there have been institutional failings and accountability will be expected and sought. Importantly the inquiry will make practical recommendations to ensure that children are given the care and protection they need.

The Research Project: A thorough literature review is being carried out to bring together for the first time an analysis of all the published work addressing institutional failures in child protection. Led by an expert Academic Advisory Board, the research aims to better understand the scale of the problem and to identify recommendations for change.

The Truth Project: The experiences of the victims and survivors are central to the inquiry. The patterns of institutional failures can not be understood without hearing from those who suffered as a consequence of those failures.

As professionals working with people with learning disabilities we recognise that our clients may struggle to get heard and be visible. It is absolutely crucial that we all take this opportunity now to support our clients to be aware of this inquiry and to enable them to contribute and to finally experience being heard.

The recent Barnardo’s report “Unprotected, Overprotected” looks at young people with learning disabilities being at higher risk of sexual exploitation compared to their non-learning disabled peers (see page 7). So looking back in time we may well suspect that a higher number of children who were sexually abused in institutions had learning disabilities. The report highlights that society today still fails to recognise that young people with learning disabilities are at risk of child sexual exploitation. If our current society continues to struggle to recognise the vulnerabilities of young people with learning disabilities we can only imagine that historically this issue was even more ignored, invisible and unknown.

There continues to be a lack of focus in national policy for young people with learning disabilities, both at a strategic and operational level. Now is the time that we can support our clients to tell their stories and give them the opportunity to have an impact on future recommendations for organisations that care for children.

The inquiry wants to hear from anyone who was sexually abused as a child in an institutional setting like a care home, a school, or a religious, voluntary or state organisation. They also want to hear from anyone who reported their sexual abuse as a child to a person in authority where the report was either ignored or not properly acted on (see panel). The inquiry is required to pass on any information about child abuse to the police. However, they will not pass on the name or contact details without consent, except where it is necessary to protect a child at risk of continuing abuse.

A Victims and Survivors’ Consultative Panel (‘VSCP’) has been set up to advise the inquiry on its relationship with victims and survivors. They will also contribute to the sizeable work of the inquiry. Alongside the VSCP, the Inquiry has launched a Victims and Survivors’ Forum as a self-nominating network to discuss the work of the inquiry and to contribute its views on progress. The Forum will have open public meetings four times a year. If you would like to join the Forum or if you are working with a client who would like to join then support them to send an email marked ‘Victims and Survivors Forum’ to: contact@csa-inquiry.independent.gov.uk.

The Public Hearings Project: The inquiry will select case studies from a range of institutions that appear to illustrate a wider pattern of institutional failings. Evidence is likely to be taken from both representatives of the institutions under investigation and from victims and survivors of sexual abuse. Each hearing will last for around six weeks and the inquiry expects to hold up to 30 separate hearings. The evidence heard in the case studies will assist the inquiry in drawing conclusions about the patterns of child protection failings across a range of institutions. The first Public Hearings are likely to start in 2016.

A message for professionals: The inquiry wants to hear from professionals, including care home workers, social workers, NHS staff, teachers, local authority staff and police officers. If you currently work or used to work in an institution or situation where you were involved in the care of, or protection of children and have information to share, the inquiry needs to hear from you. Whistleblowers will be protected.

Hon. Lowell Goddard urges us all to “Take a proactive stance towards the inquiry – review your files, records and procedures voluntarily and take the initiative to self-report instances of institutional failure, rather than waiting for us to come and see you. Above all, review your current safeguarding policies to make sure they are consistent with best practice, and take whatever steps you can to provide a safer environment for children now.”

Do you have anything you want to say to the inquiry?
Here’s what you should do
Call the helpline on 0800 917 1000
Email: share@csa-inquiry.independent.gov.uk
Write to the: Independent Inquiry into Child Sexual Abuse,
PO Box 72289, London, SW1P 9LF
You can also tell the inquiry what happened to you online on the website https://www.csa-inquiry.independent.gov.uk/

a) The inquiry will contact you if you want them to
Someone from the inquiry team will contact you within 15 days, before if it is urgent. They may ask you to tell them more about what happened to you. This can be done over the phone, or they will send you a guide about how to write it down, or arrange for you to talk to someone on your own.

b) Talk in private to a member of the inquiry
You can tell what happened to you to just one person. You can bring family, friends, or other support with you. A counsellor will be there for extra support if you would like it. What you say will be recorded and a summary will be written down. You will have the chance to check the summary and change or add anything. No one outside will be able to read what you have said. You will receive a phone call a week later to see how you are feeling. If you would like more help because of what happened to you then you can be referred to another service in your local area.

c) Your experience will help the people doing the inquiry
What you say will help the people doing the inquiry to write their reports and say what should be done to protect people like you in future. Your name will not be made public.

d) Give your advice
If you share what has happened to you with a member of the inquiry team you will have the chance to leave a short message. You could say what happened to you and how it affected you and others, or how you feel children could be better protected. Nobody’s name will be mentioned in these messages. The messages will be published with the yearly report for the nation to read.

Reference
Barnardo’s, (2015). Unprotected, overprotected: meeting the needs of young people with learning disabilities who experience, or are at risk of sexual exploitation.
https://www.iicsa.org.uk/

Kate Snowden is a psychotherapist with the Young People’s Service and the Forensic Service at Respond.

The Care Act shows its teeth

Haringey’s failure to provide an advocate, and the first judicial analysis of a little known part of the Care Act – accommodation for asylum seekers – give us the first indications of how the new Act can be applied. Belinda Schweher explains

We now have the first legal precedent of real principle under the Care Act. This concerns the mandatory nature of the duty to appoint an advocate if the statutory threshold is met (the person’s likely experience of substantial difficulty with involvement in the assessment process), or no reasonable council could consider the person to be without substantial difficulties. The approach of the Court means that it is unlawful for councils to assess a person without an advocate, if one is triggered, and that the assessments made without one, when the duty has been triggered, are likely to be declared invalid.

The woman in question (SG), an asylum seeker, had post-traumatic stress disorder (PTSD) and resulting anxiety and depression; severe memory difficulties, could not count, could not tell the time and had severe difficulty in learning her way to new places and using public transport. She struggled with many basic tasks, including self-care, preparing and eating food, management of simple tasks and taking medication. Haringey failed to appoint an advocate until after the assessment had been completed.

Are the shortages an excuse?
Resourcing an advocate, at a time when most IMCA organisations will be stretched to capacity on the DoLS backlog, may be difficult. The council’s barrister suggested that because demand exceeded supply, it was relevant for the Court to take that into account.

But the judge said:
“[Haringey’s barrister] …contends that as a result of the new Care Act ‘demand currently outstrips supply.’ She says the claimant’s services have not been prejudiced as a result concerning the outcome of the assessment, but I agree with [SG’s barrister] that we simply do not know that. I accept the defendant’s submission that there may be cases in which it is unlikely the presence of an independent advocate would make any difference to the outcome. This is not one of them because this appears to me the paradigm case where such an advocate was required as, in the absence of one, the claimant was in no position to influence matters.”

So this case decided that the absence of independent funded advocacy where the right has been triggered, or could not reasonably be denied to have been triggered, renders an assessment invalid if challenged.

Low advocacy numbers
My concern is not merely that advocates are not being found for those who are entitled but that First Contact systems in councils are not following the law about who is entitled to be referred to the council’s commissioned arrangements for independent advocacy.

What may be being overlooked is that a person’s relatives may be willing to speak up and be involved in their loved one’s assessment, obviating the need for a formal advocate – but they are not able to be seen to be appropriate for that role, unless the person with the substantial difficulty actively consents. That must mean understanding what the person is going to do for them and that they are entitled to someone else if they don’t want their relative to support their involvement.

Presumably, councils are assuming that people are happy to accept this support from their relatives and are not necessarily explaining that they don’t have to have them and that they can have a paid-for skilled alternative.

The issue for asylum seekers
The claimant was an asylum seeker, both before and after the Care Act came into force but had been granted asylum by the time of the hearing. She challenged a decision made in May, under the new Care Act, that she had more than solely destitution-based needs for care and attention (which are eligible needs under the Care Act) but was not entitled to accommodation because it was not accommodation that she really needed.

Although the paperwork described her as ‘not eligible’, the council seemingly accepted a clear duty to provide services, both before and after the May decision, but not accommodation through its new Care Act powers.

This shows that it is no longer a good idea to use the concept of eligibility in relation to a particular service: one is eligible, and then care planning determines for what, precisely and separately.

The claimant had a wide range of unarguably significant inabilities under the new criteria and Care Programme Approach needs as well.

The post-Care Act May decision was first made on the basis that the claimant was not entitled to receive accommodation under the Care Act, because she had accommodation available to her provided by the National Asylum Support Service (NASS). Under the old law one had to ignore the accommodation provided by the NASS when deciding whether care and attention was otherwise available under the National Assistance Act (NAA). This judge held that that is STILL the law under the Care Act. The council had conceded that point at the hearing; the real issue was whether the needs required an accommodation-based response.

Under the National Assistance Act the need for care and attention for a person with immigration status had to be at least accommodation-related– not just a need for a fridge, or other physical assistance, for instance.

It did not mean that care and attention could ONLY be of the kind that could be provided by a specialist setting such as a care home. But the old case law established that a need for ‘care and attention’ simply had to mean something more than just ‘accommodation’. The law (section 21{1}a) was not intended as a general power to provide housing. The ordinary meaning of the words ‘care and attention’ in this context was ‘looking after’, doing something for the person being cared for which he could not or should not be expected to do for himself. It might be: household tasks which an old person could no longer perform; protection from risks which a mentally disabled person could not perceive; personal care, such as feeding, washing or toileting. The input had at least to be care and attention of a sort which is normally provided in the home (whether ordinary or specialised) or would be effectively useless if the claimant had no home.

Having summarised the old law, the judge said in his opinion, these principles continued to apply under the Care Act:
(a) the services provided by the council must be accommodation-related for accommodation to be potentially a duty;
(b) in most cases the matter is best left to the good judgment and common sense of the local authority;
(c) “accommodation-related care and attention” means care and attention of a sort which is normally provided in the home or will be “effectively useless” if the claimant has no home.

The judge gave his view that only two of the various services being given to the woman were actually accommodation-related. All the other council-provided services were to do with learning support, counselling, advice, escorting, language support, and management of appointments.

However, she was already being
• visited at home by an officer and her home environment was checked;
• assisted with domestic and practical tasks in the home by other women who lived there and by the officer;

Even though two of the services were delivered at the woman’s refuge, the judge thought it could still be lawfully within the discretion of the local authority to decide that it was not appropriate to meet needs through the provision of social care accommodation. He did not tell the council how to go about articulating that conclusion, though, on a judicial review, the body gets a second chance to make the decision correctly!

The real failure by Haringey was that it did not ask itself the right questions. The judge found no evidence at all that the council ever asked itself whether, even if the necessary services could have been provided in a non-home environment, they would have been rendered effectively useless if the claimant were homeless and sleeping on the street. “This is so, despite the fact that it was acknowledged that it was agreed that [the claimant] would benefit from some structured activities to minimise her PTSD symptoms but before that, she needs help with the very basic practical support before she can be referred for more structured activities.”
So the judge concluded that the care planning stage had to be redone.

Can people complain?
Readers may be aware that since the Dilnot proposals have been put on ice, the proposed appeal process that was to accompany them has also taken a back seat. The position remains that there is no appeal against assessment or a care plan in the social care system; the only option is complaining, or demanding a review up the line management system, or using the Monitoring Officer for alleged breaches of the law or maladministration.

On the law about the proper construction of the rights of a person with unresolved asylum seeker status to social care, Haringey asserted that since this was a service provision dispute only, the pre-action protocol at (paragraph 3.1) suggested there was an adequate remedy for this under the Council’s complaints procedure.

But the judge said that ‘in my view, it is not adequate to deal with contested interpretation of legislation’, which has always been the preferred analysis by public lawyers – the complaints decision makers are not lawyers, after all. I predict that will prove a very valuable statement for use in other cases.

This is the first care plan lost for failing to consider all relevant facts or for error of law, as well as having been derived from an invalid assessment for want of mandatory advocacy.

We can only hope for more case law so people know there is a legal bottom line under the Care Act.

What are the lessons of this case?
Independent advocacy
Councils have a duty to appoint an independent advocate if the statutory threshold is met, ie. that the person is experiencing substantial difficulty in the assessment process.

In these circumstances it is unlawful for councils to assess a person without an advocate and an assessment made without one is likely to be declared invalid if challenged.

Relatives are not considered appropriate for that advocacy role unless the person actively consents which should mean being informed of their right to a skilled advocate.

Asylum seekers
The judge decided that
(a) the services provided by the council must be accommodation-related for accommodation to be potentially a duty;
(b) in most cases the matter is best left to the good judgment and common sense of the local authority but councils should ask themselves whether what they are providing is appropriate in the person’s environment;
(c) “accommodation-related care and attention” means care and attention of a sort normally provided in the home or will be “effectively useless” if the claimant has no home.

Complaints
There is no appeal against assessment or a care plan in the social care system; only complaining, demanding a review up the line management system, or using the Monitoring Officer for alleged breaches of the law or maladministration.
Belinda Schwehr
Care and Health Law

Katie Clarke – campaigning mother with time for others

Katie Clarke found time in her busy life to talk to Seán Kelly

When Katie Clarke meets me she combines the trip with collecting the latest volunteer recruit and it soon becomes clear that multi-tasking is a necessary skill if she is going to fit all her tasks into the day.

That she has mastered the skill is evident from her busy life. Katie says her favourite job is being the mother of six children but she also holds down a portfolio of freelance and independent work, is an activist and campaigner as well as managing a team of support staff for one of her children. Her daughter Nadia was born with complex disabilities, including profound deafness, a fact that has shaped Katie’s life ever since. Now, 23 years later, she describes Nadia as her main inspiration – even her teacher. “Most of what I have done since I have had children is because of Nadia and seeing how she fits in”.

Asked to describe herself Katie says she is an activist-mother. But she adds with a smile, “a nice activist”. After more thought she settles for being “an activist for my own family and a campaigner for other families”.

Inequality
Nadia does not have learning disabilities but many of the children of families Katie works with do and she says many of the issues are the same. She first became aware of inequality when in her late teens she spent over a decade trekking round the world. “I learnt so many things – about life, about society, about inequality”. She returned and got married and after a first child gave birth to twins at 30 weeks. Nadia’s brother lived for only a week. “Obviously that was really traumatic. Nadia was seriously ill and we thought we were going to lose her. It was at that point I knew that nothing would ever be the same again”.

The next challenge was to find inclusive education for Nadia. “We lived in Northumberland and we were determined she should go to a mainstream school”. Katie went to an Inclusive Education conference, taking another baby with her, and discovered the social model of disability which she describes as a lightbulb moment.

“That was life-changing because I met amazing disabled people and I also started to meet parents at Parents for Inclusion. It was brilliant to meet people who were like-minded”.

The family moved to Halifax because of Calderdale’s commitment to inclusive education.

Nadia uses British Sign Language and so all the family sign, as do her personal assistants. Nadia also uses a Dynavox, an electronic communication aid that speaks. It was seeing the benefit of Nadia having a voice that led to Katie setting up a charity 15 years ago called “1Voice Communicating Together” with a speech & language therapist, Tamsin Carruthers. The charity supports families with young disabled people who use alternative communication aids and aims to help change attitudes and how services think. This small charity with no paid staff won the Guardian Charity Awards and Katie herself was made an honorary Fellow of the Royal College of Speech & Language Therapists.

Thanks to Katie’s contacts and 1Voice Nadia grew up with the message that it’s no big deal to have an impairment. Nadia is now a role model with 1Voice working with other young people with disabilities at family events, encouraging them to ‘think big’.

Katie set up the Calderdale Parent Forum, one of the first in the country, to give families a voice in the planning of services. She then joined the National Network of Parent Carer Forums as the Yorkshire and Humber Rep but her biggest love, as she put it, was just being with families, listening to them and sharing and giving each other information and mutual support and respect. She says, ”It is tough, really tough. The hardest job in the world is to be a good parent”.

Next, she worked for Contact-a-Family as a Parent-Associate and at the same time set up Visits Unlimited. Visits Unlimited provides training for staff in the tourism industry about making their services accessible and welcoming for disabled people. Katie tells me that people often come into a Visits Unlimited session looking scared. “But then they get into it because it’s fun and informative. It’s great to see people’s lightbulbs go on like mine did“.

Purpose
As a mother Katie tries to help keep Nadia happy and living with purpose. “The purpose bit is very important. To make that happen in a world that disables her, but also a world that is really changing with austerity, is incredibly difficult. The hours that my husband and I put in are unseen and unpaid. It’s our duty as parents but we save the local authority thousands of pounds”.

Despite this Katie says that parents are not treated well by local authorities. Parents who manage direct payments are unfairly scrutinised “to the penny – much more than organisations that provide care”. She knows families who are losing their support hours because the parents can’t provide outcome-based evidence on how the money is spent. “And they only get six hours a week”. she says.

Nadia has nine personal assistants. “We pay much more than we are supposed to pay on the direct payments. We juggle that by having a volunteer”, she explains. Nadia interviews prospective staff and as a result they have a ‘dream team’. Surely this means there are a large number of people to feed? “Yeah, I feed everybody who is in our house. I am not very good at cooking for two but give me ten and it’s no problem!”

Two years ago Katie began a new social enterprise called Bringing Us Together with Debs Aspland who lives in Kent. Bringing Us Together uses social media to tell families about what is happening such as campaigns. “We aim for positivity because our lives are tough, what with the cuts to social services and all the incredible stresses of family life”. Bringing Us Together is now running a course about building the resilience and emotional well-being of parents.

We discuss the sometimes unfair and negative view of parents from social services staff. Katie says that parents can sometimes be antagonistic. “They may have had a sleepless night with kids having an epileptic fit. Parents deserve a medal. We are not the enemy!” she says.

Nadia has had eight social workers in the last four years. She is hoping to go to College but needs an extra £7,000 to live there. She’s got a new EHC (Education, Health and Social Care) plan. Education have been great but social care haven’t been contributing. “They have told us “categorically” there is no more money for Nadia. How do you tell Nadia? She bursts into tears. Those words like ‘choice’ and ‘control’ may as well be fictitious, because the control is with social care budget holders”. Nevertheless Katie remains determined that Nadia will go to college. “We are in what I call negotiations”.

Dreams
“Nadia has been brought up to have those dreams. She knows that her brothers and sisters can go off and that there she would be, still living with mum and dad. Nadia knows how much we do to support her even if she tells me to “F. Off” sometimes on her Dynavox! Direct payments – great idea –but actually it’s bloody hard. And it just takes over your whole life”.

Somehow though Nadia herself provides the balance. “She doesn’t drain us, she uplifts us. I’ll come home now and Nadia will ask me where I have been, how’s it been and what you’re like. It’s uplifting. It’s interesting. I learn to be a better person. She tests me all the time and I’m not a good enough parent when it comes to Nadia. I have to learn a lot. I learn a lot more through Nadia than anybody else can teach me”.

How would she like to change the wider world? “I see myself as a seed-thrower. Not really digging them in but just flinging them out around the country. They are probably wild red poppies growing everywhere, a few sunflowers, and a bit of sun. No barriers, just fields of poppies. And poppies are equal you know, there’s no one that stands out differently, everybody is the same”.

Bringing Us Together has a new project called Justice Together which is being developed with the charity Respond. “The plan is for families to have circles offering skilled support – for example, a counsellor or help with their support plan, a psychologist’s assessment, an independent social worker to stop the whole family going into crisis”. The aim is to prevent further deaths like those of Connor Sparrowhawk (Justice for LB) and Thomas Rawnsley.

Katie’s powerful online blog called “Havoc in Halifax” about the family’s life and the challenges they face is open and often funny. Does the family mind? “No they are cool. And we’re a sort of public family anyway. When you have a team of nine people in your life as well as social workers coming in, you’re pretty open”.

Space
So what’s next? “There won’t be a next. This is it for the next five years. Then I would like to have space to read more books, do some long walks and go out for meals with some of the wonderful mums I have met across the country. I am a real ideas/project person. I love setting up projects but I can’t set up anything else. After Bringing Us Together and Justice Together. I have to stop now”.

Or maybe, I suggest, you could just throw a few seeds out and let somebody else cultivate them? Yes, perhaps, she laughs.

Bringing Us Together: http//justicetogether.org.uk
Justice Together: http//justicetogether.org.uk
Katie’s Blog “Havoc in Halifax” : https://katieclarke2014.wordpress.com

Does supported living help people get better lives? asks Alicia Wood, CEO, Housing & Support Alliance

Well, yes and no. Supported living is a concept that says people with learning disabilities should determine their own lives, choose who they live with and where. The concept is straightforward and achievable if you start with a person or a group of friends who want to live together.

The supported living services developed in the early days came from de-registering care homes. Good organisations attempted to shift so that housing and support was more within people´s control than before, though not always what would be defined strictly as supported living. Not-so-good organisations simply changed the name over the door of registered care homes and called it supported living and the best that happened was that people got a better personal income.

Supported living is often perceived as a tenancy-based service model. We hear `supported living house´ ` supported living flats´ `our supported living service´ used by providers that retain ownership of where people live. The term has become synonymous with a service type and often confused with supported housing.

Providers have had to struggle with bridging old and new worlds and it isn´t easy. We have historic services steeped in the structures of residential care that tenants, staff and families are happy with. Yet we have young people and families demanding to live in their communities, with people they like, being supported in the way they want.

CQC regulations are clear
There is nothing wrong with good quality services where people share, have some restricted choices but can change things or move on, like we have all done in our lives. But we cannot pretend people have real choice and control when they don´t. CQC regulations are clear that where domiciliary care is being provided, the provider must not treat it as a care home and people must have the same rights as anyone else who rents or buys their own home.

What we know is that gone are the days when we open up a `home´ and fill it with people. Many of our members are now setting up housing and support arrangements around individuals and people who choose to live together. This is definitely the future for supported living but not yet the norm. Others are looking at more flexible models of housing and support where people have their own flats in an`extra care´ type arrangement. Providers need to be flexible; working with individuals, families and commissioners to provide a range of support, help people to find housing, housemates, friends, work and learning. It is good to have options where people can live alone, if that is what they want, or with friends but we need to find ways to connect people with wider networks and have richer lives. Community, relationships and dealing with loneliness and isolation need to be as important as keeping people safe.

Radical rethink
We need a radical rethink about the concept and language of supported living. Why don´t we talk about independent living for people with learning disabilities? We need to move from simply defining independence as `doing everything for ourselves´ towards a definition of determining what happens in our lives, even if we need help to do this. Let´s think about what independent living means for people with learning disabilities, even for those who need lots of support and want to live with others. Let´s start thinking about how people live in terms of their human rights and not some label they happen to have attached to them.

Giving small organisations a platform

Gillian Parker reports on the recent BASE conference.

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BASE – The British Association of Supported Employment – is an independent association whose members help find jobs for people with disabilities. Supported Employment is built on the social model of disability. BASE members work to a zero rejection policy which supports anyone with a disability to find and sustain paid work through matching the right job and the right support with each individual. Membership includes large national organisations, smaller local council and NHS services, social enterprises, schools and colleges.

For more information on BASE & Supported Employment visit the website at www.base-uk.org or follow us on Twitter @base_tweets or base.uk on Facebook
Workshop presentations are available at http://base-uk.org/base-conference-2015/workshops
Thinking about joining BASE visit http://base-uk.org/about/join

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The increasing importance of a specialist disability employment programme was stressed by Steve Hawkins CEO of Pluss, the main conference sponsor. Without Work Choice and the smaller specialist organisations which support people with more complex needs, he felt, it will be difficult to reduce the disability employment gap and this is why BASE is so important in providing a platform for the smaller organisations.

Rapt attention
The panel discussion, chaired skilfully by BASE’s chair Paul Wilson, was about the future of DWP’s Welfare to Work programme. It drew rapt attention from delegates keen to hear from commissioners, providers and the current head of Disability Employment Strategy at the DWP, on the options for future employment programmes.

Questions addressed by the panel included whether a single programme can work effectively, how well people with disabilities have been served by the existing programmes and what the evidence says about what works. Alas there was no announcement on the future strategy for work choice by the DWP other than no decisions have been made. It’s difficult to ascertain how much effect quiet lobbying like this has upon policy. This year BASE had opened out its conference by offering 30 complimentary places to parents and carers of people with disabilities. So if nothing else the representatives from the DWP came into contact with them as well as people with disabilities and it is hoped that experience will remain with them when considering the effects of their decisions.

Support for initiatives such as the Neighbourhood Network scheme by Leeds City Council was praised by Chief Executive, Tom Riordan. Support for these types of schemes has enabled the Council to concentrate its budget on more targeted and specialised learning disability services (LDS) and as a result Leeds LDS had been transformed from inadequate to one of the best in the country.

Of the smaller workshops the one that stood out for me was delivered by Mark Cook of Anthony Collins Solicitors entitled Social Value in Public Services – what’s legally possible? With cuts to local council social care budgets, access to supported employment services is increasingly a postcode lottery and dependent on local authority priorities. Mark illustrated just how the Public Services (Social Value) Act 2012 can be utilised to fund supported employment opportunities. Existing legislation already provides a vehicle for supported businesses and other social enterprises to succeed in winning local authority contracts. The key to effective procurement and commissioning lies in embedding social value at the core of policies, along with building into contract award criteria specifications to enable organisations to compete on a level playing field.

Team player
Mark Appleton was this year’s recipient of the David Grainger Award. This is presented to a person with a disability who has made outstanding progress in their employment and is a significant team player who always supports his or her colleagues. Mark has now completed two years service at Vision Office where he received specialist support from Pluss. He said: “… it is great to feel part of a team and it has helped me overcome a lot of my personal issues and get on with life again”.

Changing a million minds
One presentation has remained etched in my memory. Laura Green’s talk caused more than a few glistening eyes around the room. It encapsulated just what it means to be ‘disability confident’. To hear a young entrepreneur like Laura who has learning disabilities speak honestly, without a sense of entitlement, about her yearning for a ‘real job’ and avoiding someone else’s ‘master plan’ for her life, was a great reality check. What defines Laura is her attitude to life; she has a ‘passion for fashion’ and has found a way to create and sustain her business Serendipity.

As she said: “My business may not make a million pounds but I will change a million minds “.

Not bad as a mission statement, is it?

Gillian Parker is an associate working free lance for BASE.

Insight into an inner world

Rosemary Trustam attended an inspiring workshop where she learned how Intensive Interaction provides a wider understanding of people with complex and profound learning disabilities.

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What is Intensive Interaction?
Some would say that Intensive interaction has been around forever – it is a natural part of the way we all learn to communicate. In the late 1970’s Geraint Ephraim, a psychologist at a North London hospital studied the way mothers and babies connect, and developed an approach he called Augmented Mothering, to transfer some of this ‘instinctive’ interaction to supporting people with profound learning disabilities to make the most of their communicative potential. Teachers David Hewett and Melanie Nind joined him in this exploration, renaming the approach Intensive Interaction. Later Geraint Ephraim was supervisor to Phoebe Caldwell when she was awarded a Joseph Rowntree Foundation study fellowship to develop the work she had been doing with adults with complex needs.

These separate threads all focus on the need to offer clear confirmation of our interactive partners’ internal messages. This confirmation, or mirroring, for ‘neuro-typical’ babies (ie. those developing typically) helps the move from expressive to intentional communication. However, if a baby has profound learning disabilities and additional sensory issues or autism, their cognitive barriers stop them absorbing the confirmation their care givers are sending them, so communicative development is not so easy. What is easier to absorb is the confirmation, the feedback, they give themselves. People can get ‘trapped’ in their inner world of self-confirmation, through repetitive patterns that are more meaningful to them than anything the outer world is offering.

By mirroring and celebrating the sensory feedback a person is giving themselves through their behaviour, in a meaningful, accessible and interesting way, Intensive Interaction helps people to access the outer world, and leads to exploring the fundamental steps of communication. In turn this can motivate social interest, self-confidence and wellbeing.

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For the last 25 years in a quiet corner of Surrey a group have been doing some amazing work with people with more profound learning disabilities and complex needs. The group’s aims are to encourage interaction and to encourage people’s interest in the social world.

Us in a Bus started life 25 years ago as a short-term Scope project. The project was so successful the group set itself up as an independent charity to continue the work. Chief Executive Janet Gurney has worked with Phoebe Caldwell using Intensive Interaction and runs training workshops to widen its impact. Janet is an inspiring trainer, full of practical experience to back up the theory of Intensive Interaction.

I was a participant at a recent Introduction to Intensive Interaction workshop led by Janet. Other participants included parents, support workers, service managers and Speech and language therapists. Janet explained how observation is the starting point. We need to notice what the person is doing, to speculate about what the action may feel like to them to do it, and to explore how we can respond by echoing an aspect of that sensory feedback back to them. Initially, there might be less interpretation and more observation.

Empowerment
She cautions against looking for ‘problematic’ behaviour but to look instead for what they do when chilled out, how they connect with themselves. She also urged communication partners to ensure the control and pace rests with the person – this will nurture the sense of empowerment that comes with the knowledge of being ‘heard’ and respected. We need to guard against pushing forward for ‘progress’ and be aware that the person will let us know when they are ready to move on.

We heard about Robert, in his late 40s, who has profound learning disabilities and dual sensory impairment; it would be easy to think he is ‘doing nothing’. But when we take the time to observe carefully, we can see that he likes to make a popping sound with his lips –this seems important to him, as he repeats it to himself regularly. He lacks mobility and some muscle control and seems comfortable but inactive in his a specially made armchair. But again, when observed carefully we see him to wriggle upright and lean his head to one side for a few seconds before making his popping sound; he then strokes his cheek. It’s a regular ritual, important to Robert and gives us an opportunity to let him know he has been noticed by the ‘the external world’. The approach adopted was to sit by him, gently leaning against him, for some time over several weeks until he was thought to be comfortable with this. His communication partner then introduced touch, related closely to the sensation he was creating for himself, e.g. gently but firmly stroking the side of his neck when he leans his head to one side and echoing his popping noise with a tap. Janet stressed it is important not to be put off if the initial reaction is negative – a slight move away may well not be a final reaction. We all take time to adjust to something different and we need to give Robert the opportunity to assimilate the experience before we assume he is not interested.

Awareness
Over time, what might happen, as in Robert’s case, is an awareness that the person is interested. He began to lean further towards his communication partner in anticipation of the touch. This is the exciting stage of realising he is controlling someone else’s behaviour. Without this knowledge, there can be little motivation to communicate, but with it, the world starts to open up. It could be important to spend a regular period, for example 20 minutes a day, to reinforce and build this intentional communication. Some people’s span of attention may be very limited, so we might be peppering their day with small bursts of intensive interaction to build messages of recognition, easily recognisable as theirs, which would be easy to process, attention-grabbing and encourage listening. What works will vary with every individual. If a change of staff occurs, and someone else gets involved, it is a good idea to show a video of the work in a team meeting. As well as a willingness to speak the person’s language, recording and sharing is vital for consistency of approach. We need to remember that intensive Interaction is not a way of merely entertaining, stimulating or changing people’s behaviour – it is a joyful way of someone learning about the positive influence they can have on others and themselves.

Many people with autism have issues about choice and control which may include the importance of habits which give them pleasure and which can be copied and celebrated. Other behaviours can be hard to understand and copying or celebrating them could make things worse. How someone with autism or profound learning disabilities processes their sensory messages can be difficult to understand (1) and aspects can include hypersensitivity and fragmentation. In the case of hypersensitivity, we too often assume odd or challenging behaviours have emotional roots whereas close observation might reveal a different cause. For example, someone who strips off their clothing might indicate they are in acute discomfort from the way their clothes feel to them. An example Janet gave was of how someone without learning disabilities but who had autism had suffered pain for days after simply trying on clothing that was tight and of a harsh material. Now they ensure their clothes are loose and of soft material.

Problems with patterns
Hyper-sensitivity to stimuli is common in autistic people who can have difficulty separating strands of information. So if there are multi-coloured clothes, patterned blinds, busy notices, etc. around, all jostling for attention, people won’t get important facial information when we know eye contact can help non-verbal communication. Many have problems with patterns – akin to dyslexia where words blur – the speed of the eye receiving information is out of sync with the speed the brain might be processing it. We need to see if we can create an easier visual backdrop or investigate testing for scotopic sensitivity (for which coloured lenses might be prescribed). Janet quotes Theresa Joliffe describing how “objects can seem frightening; moving objects harder to cope with and, if they make a noise, harder still, whilst people are the hardest as they move unexpectedly, make noises and place all sorts of demands which may be impossible to understand”. The person may find coping mechanisms by looking at the carpet to focus, or flapping their fingers to slow down the movement or maybe touch to check. When other things are still, or when anxiety is reduced, people’s processing may become easier.

In Phoebe Caldwell‘s video Learning the Language (2) Gabriel walks, runs around, twiddles, bangs, makes noise… He is locked into repetitive behaviours and not engaging. Phoebe gets alongside him, copying him, trying different ways to focus on his world and what is meaningful to him. She follows his lead to access his inner world and draw attention to the outside. Eventually he shows interest, almost surprise, at someone using his language. She focusses on the rhythms he is using – the way he flicks string, for example. When he gets really interested in how she is responding to him, he moves so close to Phoebe that she blows in his ear. He tilts his head for her to blow in the other – it has become a mutual and fully intentional communicative exchange, clearly enjoyed by both parties.

A parent at the workshop, Jen, told us about her son Christopher, who has severe autism and who doesn’t communicate verbally. She communicated instinctively by copying and embellishing his behaviours, later learning that this had a name – Intensive interaction. When Christopher left full time education and when she wanted an ordinary, meaningful life for him, she was told her expectations were too high. He gradually lost his home, his friends and routines, and his voice. In a residential home, for four years he was hitting his head on the wall, was left alone, staff believing he chose to stay in his room, labelled as lazy and without feelings. She found Us in a Bus and brought Intensive Interaction into his life and he slowly re-entered the world. There are still challenges in his life, but the work done with him in one year has increased his confidence and his distressed behaviour has significantly decreased.

Satisfying sense
Janet also discussed with us how the things people enjoyed most could be things that we found socially difficult. People’s expressive behaviours might include exploring bodily substances in a way we would find hard to engage with. We need to find a way to be close enough to properly observe and engage in the aspects of the exploration that we can and should share. Sitting too far away and trying to interact from a distance, as we don’t like the smell, or feel concerned about germs, may mean we miss important behaviours. A young woman using saliva in an imaginative and rhythmic way, but which you want to keep your distance from, might mean you miss the fact that she is humming quietly in time to the noise she is making with her saliva – and it is the humming you can connect with! Imagination, creativity and willingness are all vital aspects of Intensive Interaction. And the benefit is the deep and satisfying sense of connection it can lead to.

The critical message from Janet is that to help people we have to get inside their world, observing and following their lead and making a total commitment to communication. ‘We are learners building bridges to the outer world and opening up access to learning. We’re an attentive audience, using their language to applaud”.

References
1. http://www.autism-resources.com/nonfictionauthors/ThereseJolliffe.html
2. http://www.phoebecaldwell.co.uk/films.asp

For more information on Us in a Bus training go to:
http://www.usinabus.org.uk
Us in a Bus’ next one-day open courses in 2016 are on 26 January; 25 May; 15 July; 13 October; 5 December

For more information about intensive interaction go to:
www.intensive interaction.co.uk

Open stories open minds

Openstorytellers is a charity based in Frome, Somerset, which emerged from a Lottery-funded project sponsored by the British Institute for Learning Disabilities from 2004-2007. They work all over the country and internationally. Their mission is to enable people with learning and communication difficulties to tell stories – of all kinds. Director, and story teller, Nicola Grove explains what it’s all about…
“The thing is – we all have stories, don’t we?”

This was the amazing statement made by one of our storytellers with learning disabilities, at the end of our very first public performance of a King Arthur legend at the Glastonbury town fete in 2005.

The story we had told with our company was the tale of Sir Gareth of Orkney, whose experiences – of leaving home as a young man, being bullied and disparaged, working in kitchens, and succeeding against all the odds – resonated strongly with their own lives. Many of our 14 storytellers had grown up in institutions; they had attended special schools, they now lived and worked in segregated settings, taking low paid service jobs. Things have changed in the last ten years – but not all that much!

Great narrator
We had come to the end of the story. Brian (now a trustee of the charity, whose autobiography is about to be published) is a great narrator and actor who can work an audience like a professional. He has an extraordinary skill in getting the last word. In the film of the event, you can see me at the edge, trying to stop him, as I thought we had really finished. Instead, he stepped forward, spread his hands, and delivered this statement to the 50 members of public who had turned up to hear us tell… “We all have stories, don’t we?”

We all have stories. But not all of us are able to tell them in ways that others will hear.

Our storytelling company explores legends and histories that are relevant to people’s experience. Our research has shown that people with learning disabilities and autism seem to be found in some of our earliest myths and folktales.

Wrong assumptions
We turn these stories into performances that encourage the audience to question and discuss the way people are represented, and to relate them to their own lives. Take Jack – from Jack and the Beanstalk and many other “Jack” tales, which, by the way, are found all over the world. Jack is often a young man who is portrayed as “simple” or finding it hard to understand what others say. Or he’s lazy, or good for nothing. He always has a good heart, though, and that’s what helps him to win through. In Jack’s Review, we imagine his annual meeting with his care manager, mother and employer, all of whom are finding him a bit of a challenge. Through telling a series of stories, Jack gets them to see what he can achieve, and where they are making some wrong assumptions.

Another of our performances centres on the story of Peter the Wild Boy, a real character from the 18th century, whose case was recently publicised by the historian Lucy Worsley. We base our workshop on a pamphlet written by the contemporary journalist and novelist, Daniel Defoe, who asks the question of his readers – can someone who does not talk be said to have a soul? You’ll have to see our performance to find out; or you can read a discussion of his case by our storytellers in a forthcoming book chapter (see end of article for details).

Classics brought to life
Openstorytellers is an inclusive charity and one of our main concerns and interests is to engage people who have severe and profound disabilities in storytelling – whether fictional or personal. We run multi-sensory book clubs, where classic works of literature are brought to life using the original text, backed up by movement, dance, music, illustrations and objects to feel, smell and touch. In Treasure Island, for example, you get to rifle through the pockets of the corpse of Billy Bones, as the clock ticks, the fog creeps in, and the tap tap tap of Blind Pew’s stick warns you of approaching danger.

Our main work, though, is centred on working with staff, families and people with severe disabilities themselves to recall and share the small stories of everyday life. Through our certificated programme, Storysharing®, hundreds of children and adults who cannot speak for themselves have begun to recall and share what happens in their lives. Sometimes these are the unexpected, funny events – when the horse ate Margaret’s prize rose; when a teacher fell, fully clothed into the swimming pool, when the bus got stuck in the mud and we all got wet pulling it out.

Sometimes they are the tricky unexpected things we deal with by telling the story over and over again to come to terms with it.

Sometimes, however, even small events can be used to bring a community together and to reflect on what we share and how important everyone is – like when the cat goes to the vet and we remember what it’s like to be ill. This programme, funded by the Hamlyn Foundation, has been taken up by service providers and schools in the UK and abroad, to provide a truly person-centred and accessible way of giving people a history and a voice.

The services and project we run are all designed to celebrate the contribution that people with learning disabilities can make to our society and are centred around the belief that, yes, we all have stories, and they are all worth hearing.

For more information: www.openstorytellers.org.uk

The discussion about Peter the Wild Boy will appear in ‘What Peter means to us’ by Grove N et al in ‘Intellectual disability: a conceptual history from the medieval law courts to the great incarceration’ eds. Chris Goodey, Patrick McDonagh and Tim Stainton, to be published in 2016.

To read more by Nicola Grove and others about storytelling:
Grove, N. (2015) “Finding the sparkle: storytelling in the lives of people with learning disabilities”, Tizard Learning Disability Review, 20, pp. 29 – 36
Grove, N. (Ed.) (2013) Using Storytelling to Support Children and Adults with Special Needs: Transforming lives through telling tales. Taylor and Francis

Railway Road – a model that works for people and the local authority

Wigan-based Imagine, Act & Succeed is pioneering a model of housing in which people getting support live alongside ‘good neighbours’ with benefits for tenants and savings for the local authority. Terry Keely explains how it works.
Like all learning disability providers we are facing major challenges, fighting off drastic funding reductions to support levels while trying to run support models we can be proud of. Over the past few years we have seen the establishment of ‘quick fix’ solutions – blocks of flats, for example, created to deliver the financial agenda but not getting it right for the individual.

Deconstructing stand-alone services and remodelling them for large groups of people is very easy to get wrong. Far too many decision makers appear to latch on to the bottom line saving and overlook the need to allow people to live alongside the wider public within a more natural community.

We decided to propose a model that did offer some financial efficiencies but at the same time minimised the number of supported people within a specific environment. We term this an ‘intentional community’ as it is made up of people with support needs and the general public. Former Chief Executive of Imagine, Act & Succeed Owen Cooper had seen what could be achieved in a similar model in Toronto developed by Judith Snow and the City Council. This initially took a great deal of explaining, and persistence in identifying the people who could see what we were trying to achieve. Fortunately, we had a local authority, Wigan, who could see the positive aspects of the idea and a unique property owner committed to doing something different, not simply maximising revenue.

Railway Road in Leigh has twelve flats of which six are for people with learning disabilities and six are offered to the general public who sign up to being ‘good neighbours’. Initially, we thought about formalising the good neighbour role by mapping out specific commitments but as the scheme took shape we allowed the role to be more natural. A good example of the role is simply being there overnight; five of the six tenants, who formerly had specific overnight staff, now share one. This is a good example of how a model can save money without being simply driven by financial objectives.

Shared vision
Suitable good neighbour tenants are identified by the property owner, Shirley Longley, who worked with us during the two years spent creating the model. Shirley is able to communicate to prospective tenants what is expected of being a good neighbour. Written guidance is provided alongside the tenancy agreement. Whilst Shirley provides the six good neighbours, the supported tenancies are provided by New Foundations Housing Association, who also helped us to develop Railway Road. The essential elements between all parties are a shared vision and trust.

The six supported tenants came from a range of unrelated support services, with five being ‘stand-alone’ tenants. To identify who might benefit from a move we applied a philosophy of ensuring that people would be better off, both in lifestyle and relationships, and if public money was saved so much the better.

This is how some of the people benefited:

Peter lived in a single tenancy with round-the-clock support and although neither Peter nor his staff had major concerns about this support model it existed in isolation. Having staff around all the time made him feel he was being supervised. Peter was very keen to move to Railway Road, particularly because overnight staff would be on site but not in his personal accommodation.

Since the move Peter has benefited from having an increasing amount of time unsupported and the support he does get is targeted to his needs and wishes. He has also sustained a long term relationship with his girlfriend who visits him regularly. So although before the move Peter had a more expensive service it didn’t tick every box and now he says he wouldn’t want to go back to living in his old house with his old type of support.

Joanne lived in single service with partial support but no overnight staff. As with Peter the model of support worked at one level but allowed for little socialising. With the move to Railway Road Joanne has made more friends, not just with other supported tenants but with natural good neighbours. Popping into a neighbour’s flat to watch a film or going to the pub with them are regular occurrences.

This type of contact has added real value to Joanne’s life as previously her support, other than by the family, was determined by the staff rota. Now Joanne spends time with people when she wants to and, in turn, she offers a great deal to other people at Railway Road. The mix of formal and natural support really suits her and her identity. She now has more support without any increased cost. Joanne also says she feels a lot safer at Railway Road, particularly overnight, as she has more people around her.

David had lived in a two-person supported living service and before that a four-person house, both of which had overnight staff. Again this form of support worked functionally but there was justification for exploring a different way of living. As with all shared support models David had to accept a degree of compromise in how he lived but moving to Railway Road has provided him with more control. He appears to be both more independent and assertive, in a positive way, since the move and his decision making, about his lifestyle, carries conviction.

This can only be down to the sense of ownership he feels. Like the other supported tenants David has benefited from living alongside unsupported tenants who, in turn, benefit from having David as a neighbour. The removal of his sleep staff was a significant concern for David and his family when planning the move but now, two years later, this is working well.

Subtle changes
For support workers, Railway Road can be a major challenge as they have to work in a different type of environment. In the early days we arranged specific meetings for staff to focus on the subtle changes needed to work successfully in this mixed environment. Far too many support services can, sadly, drift into cultures influenced or determined by staff. At Railway Road there is the additional factor of considering the other people who live there. Staff have to make fine judgements about promoting natural friendship within a formal supported environment, knowing when to step back but keep the person safe. One innovation that has helped is combined social gatherings which now feel quite natural to everyone.

Establishing Railway Road has reduced the cost of supporting the tenants and it is hoped the saving is being put to good use. In theory, greater savings could have been made by just having supported tenants living there but far less would have been achieved in what really matters – improving people’s lives.

We are now actively engaged with the local authority in developing two similar schemes in Wigan and we are optimistic we will achieve similar outcomes for people.

Terry Keely is Head of Operations, Imagine, Act & Succeed,Wigan

Parent advocacy – is it time to reinvent the wheel?

Across the country isolated groups of parents and relatives are forming once more to resist the loss of the very services previous generations had fought to set up. Jan Walmsley considers what we can learn from those earlier family advocates.

Derby Mencap started in 1956 because there was nothing for handicapped children. In those days families had to bring them up themselves. (Open University, 1996)

That was Jean Morton remembering the start of the parents’ movement in Derby. She was part of a groundswell of parent advocacy. Between 1946 and 1956, 200 branches were set up, with 12,000 members under the umbrella of the National Association of Parents of Backward Children, an organisation that eventually became Mencap (Shennan, 1980). And they had a fight on their hands. In most parts of the country the only alternative to families caring for a lifetime was a place in an NHS ‘hospital’, those large now discredited institutions. Many children did not even have the right to an education. That only came in 1970. Those parent advocates fought for specialised services – residential homes, day centres, and respite care – that became known as community care.

Much has changed since those days. Good practice is to work with rather than for people with learning disabilities. People can vote. We have Special Olympics. We have successful theatre groups and a recognition that people with learning disabilities are citizens too, with a rightful expectation of an ordinary life. And yet… now those specialised services are closing, there is a loss of professional expertise, and an unrealistic expectation that ‘inclusion’ can be achieved through wishing it so. Across the country isolated groups of parents and relatives are forming once more, to resist the loss of the very services previous generations had fought to set up. Is it time to reinvent the wheel, to recreate and connect the powerful local networks of the mid 20th century?

What are the lessons from the 20th century movement? The work of the Open University’s Social History of Learning Disability Research group (Rolph, 2002, Rolph et al, 2005) gives some pointers.

1. Combat isolation
Time and again family members remember how important it was to find others in similar situations. “You met other people in the same situation as you were, otherwise you tended to feel alone”, said Mary Curtis of the Norfolk and Norwich Society (Rolph 2002 p.43). The Societies helped get rid of the stigma and embarrassment associated with having a disabled child. And they provided people with a social life – which included their sons and daughters.

Isolation may be less acute today, but it remains an issue. Changing Scenes, a Comic Relief funded project in Oxfordshire, brought older carers together. Members commented on its importance:
Before the project we were a range of disparate souls.
It helps us to be together, knowing other people with similar problems.
It’s the best thing that’s happened to me. I had no one to talk to.(Walmsley 2014)

2. Never take no for an answer
Campaigning was a serious business. It required enormous determination to get the authorities even to talk to the parents. Norfolk and Norwich Society took a year to get a meeting with some members of the Mental Health Sub Committee, only to be told they had ‘nothing concrete to offer us at the moment’ (Rolph, 2002 p. 50). And they were refused a place on that same sub committee. They did not give up but set up their own Occupation Centre which the Local Authority eventually adopted.

Parents today are similarly determined. Sara Ryan has campaigned for two years to get justice since her 18 year old son Connor Sparrowhawk died in an NHS facility*. She uses her My Daft Life blog and other social media to great effect (Ryan, 2015). Parents in Haringey have banded together in Save Autism Services in Haringey (SASH, 2015) to work with self advocates to fight local authority plans to close day services. The Changing Scenes older carers in Oxfordshire have learnt to challenge local authority decisions (Walmsley, 2015).

3. Self help
Local societies did not only ask for help from the state – at first this was almost unimaginable. Self help characterised the early days. Members trained as welfare visitors. They set up nurseries, bought holiday chalets, raised money for residential homes, set up and ran centres to provide training and occupation for adults (Rolph, 2002). Their efforts remain with us, in the shape of organisations like Hft and MacIntyre started by parents 50 years ago.

Is self help relevant today? It may be that as state funding is withdrawn, it will be necessary for families to rediscover the energy and initiative of previous generations. Like the families who founded and fund Reserved Power to employ advocates to work with families.

4. Change the narrative
“To try and get the children recognised as people” was how Brenda Nickson, a founder of the Bedford Society, described its aims (Nickson, 2005 p. 78). At a time when people with learning disabilities were often shunned, when expectations were incredibly low, families set out to change the narrative. To gain recognition that their sons and daughters were human beings, deserving not to be shut away but to be supported to live alongside other people in the community. And to gain acceptance that they, their parents, deserved support (Castles, 2004).

Finding a new narrative for the mid 21st century won’t be as easy as it was for the parents of children born in the 1940s and 1950s. Government and local authorities intent on cutting expenditure have co-opted the language of inclusion to justify withdrawing long term support in favour of short term ‘reablement’; to defend the replacement of experienced professionals with volunteers or low paid carers. Fighting to keep segregated services which were too often of poor quality is not an inspiring rallying cry. Isn’t it time to say loud and clear that we believe in inclusion – but inclusion cannot be wished into existence, it is not a cheap option. It needs investment and skilled support.

Families have always been the mainstay of support for people with learning disabilities. Reliance on them is increasing as services where parents handed their children over at the door are part of the past and those that remain shrink (Dumbleton, 2013). Research indicates that families or friends need to be intimately involved if Self Directed Support is to work well for people with learning disabilities (Glendinning et al, 2015).

Some parents are once again picking up the fight begun in the late 1940s. How much more powerful to reinvent the wheel, build a movement networked across the country, to chart what is happening, to campaign and to learn from one another, this time to build a better life not for but with people with learning disabilities and their families.

References
Open University (1996) Learning Disability: Working as Equal People Workbook 2 Milton Keynes: Open University
Castles, K. (2004) Nice average Americans: postwar parents’ groups and the defense of the normal family in Noll, S. and Trent, J. (eds) Mental Retardation in America, New York: New York University Press
Dumbleton, S (2013) Goodies and baddies: equivocal thoughts about families using an autoethnographic approach to explore some tensions between service providers and families of people with learning disabilities Ethics and Social Welfare, Vol. 7 No.3 pp. 282 -292
Glendinning, C. Mitchell, W. and Brooks, J. (2015) Ambiguity in practice? Carers’ roles in personalised social care in England, Health and Social Care in the Community Vol. 23 No 1 pp 23-32
Rolph, S. (2002) Reclaiming the past: the role of local Mencap Societies in the Development of Community Care in East Anglia 1946-1980, Milton Keynes: Open University.
Nickson, B. Never take no for an answer, in Rolph, S. Atkinson, D. Nind, M. and Welshman, J. Eds (2005) Witnesses to Change: Families, Learning Difficulties and History, Kidderminster: BILD pp. 77-86
Ryan, S. (2015) https://mydaftlife.wordpress.com [accessed 29/8/2015]
Save Autism Services in Haringey (SASH) (2015) http://saveautismservicesharingey.co.uk [accessed 29/8/2015]
Shennan, V. (1980) Our Concern: the story of the National Association for Mentally Handicapped Children and Adults London: the National Association for Mentally Handicapped Children and Adults.
Walmsley, J. (2014) Baseline Independent Evaluation of Changing Scenes unpublished – available from the author
Walmsley, J. (2015) Final Independent Evaluation of Changing Scenes unpublished – available from the author.

* The jury in the inquest to Connor Sparrowhawk’s death unanimously found that he had died as a result of drowning following a seizure in the bath, contributed to by neglect.

Research group calls for greater awareness of child sexual abuse

Female researcher

Researchers have found that as many as 15 per cent of children and young people experience sexual abuse. Rosemary Trustam reports.
Research by a group led by Barnardo’s has drawn attention to the risks of sexual exploitation amongst children and young people with learning disabilities in the UK. It included extensive interviewing of young people, practitioners and policymakers, alongside online surveys of local authorities and specialist projects. In addition to the report, a guide to support practice has been published (1).

In the last issue of Community Living, Sue Sharples described Becky’s “lack of access to good information advice and education about sexuality and sexual health” and the “sadly not uncommon stories about enforced sterilisation, sexual assault”, lack of sex education and supporters who were “unable or unwilling to answer questions” (Taking the big leap, Volume 29, No. 1). These stories are echoed by the young people and others interviewed in this timely report launched on 10 September. Made possible by funding from Comic Relief, the research was led by a team from Coventry University, Paradigm Research and The Children’s Society, working in an innovative partnership with Barnardo’s and the British Institute of Learning Disabilities (BILD).

Sexual violence
The recent cases in Rochdale and Aylesbury showed how children and young people were not adequately protected but those with learning disabilities are even less so – the prevalence of violence is three or four times higher with as many as 15 per cent of children with learning disabilities experiencing sexual violence (2). They were also found to be particularly vulnerable to sexual exploitation by gangs and groups.

Despite the changes in policy and practice in community care and the emphasis on people (whether children, young people or adults with learning disabilities) having the same needs and desires as other people, they are not seen as requiring the same education about sex and relationships. There has been a false perception that they are not at the same risk of sexual exploitation as others and are thus also not provided with the same education about staying safe online or how to recognise grooming and other manipulative behaviour in their daily lives.

Under the Children and Family and Care Acts, local authorities are responsible for the physical, emotional and mental wellbeing of children and young people and specifically for protection from abuse. But their sexual needs are not in care and support plans – and certainly not considered as a matter of course in protecting them. We know good quality age-appropriate information protects young people so sex education – which discusses risks as well as positive relationships – is needed. However, the misconceptions amongst professionals and others also need addressing to ensure they have a comprehensive understanding and expertise.

This study, by drawing attention to the needs of young people with learning disabilities as they leave school, also highlights the real risks if there is no investment in relevant sex education in schools. It also found that a significant number of young people with mild to moderate learning disabilities, in particular those on the autistic spectrum or with ADHD (attention deficit hyperactivity disorder), remain undiagnosed during school and their frustration at not getting their needs met can lead to them being labelled as having challenging behaviours and even being excluded.

Generic teams
Although they found pockets of good practice, professionals in CSE and learning disability professionals mostly were not talking together or benefiting from their joint expertise. The tightening of eligibility criteria in adulthood without this earlier identification can lead to serious risks. There was also concern on the day about the impact of specialist expertise of the increasing moves to generic teams and less focus from health specialists increasingly pulled into more physical health areas.

Thus this group with more difficulties in learning receives less help and are denied the basic tools as they mature into adulthood. Too often, through misconceptions about people‘s supposed lack of sexual needs and desires, there is a lack of expertise in educators and other professionals, and a blinkered attitude to the very real risks to them from exploitation. Young people interviewed showed they are often unaware of their right to take some control; may be over-influenced by adults (who urge secrecy); are not listened to; and may be assumed not competent witnesses for a prosecution.

One case study, Tom who had autism, was groomed by an older man who told him he should keep their sexual relationship secret as ‘lots of people thought that people with autism shouldn‘t have boyfriends or girlfriends, and that they’d be angry with him if they knew he had a boyfriend‘.

Dominic Slowey, NHS England lead on learning disabilities, a practising GP and parent of a child with severe learning disabilities pointed out that as a society the UK is fairly poor at teaching anyone the legitimacy of sexual desire and made a plea for support to help young people’s development into sexual beings as a positive aid to appropriate relationships and protection. He said if young people have a learning disability then the first message tends to be protection and exploitation, and there is blurring in the distinction made between children and adults with learning disabilities with issues of capacity. He suggested that if we educate early enough and appropriately, then perhaps some young people might not go on to express legitimate desires illegally and end up in forensic services.

The UK’s failures under the international obligations in Article 34 of the UN Convention on the Rights of the Child (UNCRC) to protect the child from sexual exploitation were stressed by Dr Anita Franklin, Reader at Coventry University. She said the rights of protection and inclusion of young people with learning disabilities enshrined in the UNCRC and the UN convention on the Rights of Persons with a Disability, need implementing. These duties ought to ensure action by Government on the recommendations.

Age-appropriate
The Minister for Preventing Abuse and Exploitation, Karen Bradley, picked up on the recommendations in support of age-appropriate sex education with all children, including those with learning disabilities, to keep them safe. She commended the work of agencies like Barnado’s in opening the Government’s eyes. She referred to a government report earlier this year following the Rochdale and Aylesbury cases and the 40 per cent increase in child sexual offences. She spoke of additional resources being put into communication and information, and how the investment in a new information system means 20 forces have been connected to the database and all will be by the end of the year. She spoke about ensuring that the professional training of social workers, teachers, etc recognises these vulnerable groups. They are currently providing funding support to 86 organisations helping victims (with extra funding this is increasing to 101) and to 87 independent abuse advisers and 13 young people advocates to give direct support. They know more is needed. She ended by recognising the particular needs of children and young people with learning disabilities and said the recommendations need addressing but it requires everyone to work together.

The report notes a high level of activity, reports and action plans in relation to the risks for children and young people but most importantly now wants to see the inclusion specifically of the needs of this group with learning disabilities within this national action. Without this there is a real risk that action will continue to be piecemeal and casualties high.

References
1. Under-protected, Overprotected: meeting the needs of young people with learning disabilities who experience, or are at risk of, sexual exploitation. Download the full reports at http://www.barnardos.org.uk/cse-learning-disabilities
2. Jones L, et al (2012) Prevalence and risk of violence against children with learning disabilities: A systematic review and meta analysis if observational studies. The Lancet, Volume 380 (9845) pp 899-907.

Working tax credits remain but there is a sting in the tail

Although the Chancellor has done a U-turn on his plan to cut working tax credits the introduction of Universal Credit will still mean many working families are worse off. Charlie Callanan has been looking at the figures.

The Government’s plans to cut tax credits caused uproar in the political establishment. In October 2015 a majority of members of the House of Lords ‘rebelled’ against the Government by refusing to accept changes that would have reduced working tax credits (WTC).

Consequently the Chancellor of the Exchequer announced in his Autumn Budget statement that he would be withdrawing some – but not all – of the planned changes.

Amendment regulations
The Government will proceed with introducing amendment regulations to make the following changes to tax credits from April:
• The claimant will have to report an increase in income where it exceeds £2,500 compared to the previous tax year, and the amount of WTC they receive will be reduced accordingly. Before April, if a claimant’s income rises by less than £5,000 within the year this does not affect their claim;
• Tax credits ‘elements’ , added together in the calculation of the claimant’s entitlement, will be frozen at current rates (except for the disability elements).

There are two major changes to WTC that the Chancellor will not proceed with:

• A reduction to the annual threshold before earnings and other taxable income start to affect a tax credits award. The threshold will remain at £6,420 per year. And the income threshold used in assessing a claim for child tax credits only will stay at £16,105.
• An increase to the income ‘taper’. Once the income threshold is reached, an income taper reduces a tax credits award by 41p in every £1 of income over the threshold. This taper will not be increased.

However, the Government is already planning to make cuts to Universal Credit (UC), the benefit that will eventually replace all means-tested benefits, including tax credits. These cuts include reducing the level of money a claimant can earn before the amount of UC they get is affected (similar to the taper mentioned above).

Furthermore, there are also the following changes being made to Child Tax Credits, (CTCs) via The Welfare Reform and Work Bill:

– removing the family element of any claims which do not include a child born before April 2017; and
– limiting the number of children that can usually be included in a CTC claim to two.

The Government state that any changes to tax credits and UC will be ameliorated by the introduction from April 2016 of the ‘national living wage’ (NLW). This will be guaranteed for workers, aged 25 and above, at £7.20 an hour, with a target to reach more than £9 per hour by 2020.

The think-tank Resolution Foundation has analysed the combination of changes to benefits (including tax credits and UC) and changes to the tax system. They have found that by 2020:
• a low-earning couple with three children, where one parent works full-time and the other works part-time, will lose £3,060;

• a single parent with one child, working part-time on the NLW, will lose £2,800;

• a single person with no children, working full time on the NLW, will be £1,280 better off.

Qualifying conditions
As the majority of claimants that qualify will still be able to claim tax credits, the following is a reminder of some of the basic qualifying conditions.

• Tax credits are a cash benefit for people in low-paid work of at least 16 hours a week, and/or people who have dependent children and whose income is low.

• To get WTC the claimant or their partner must be aged 16 or over and working for 16 or more hours a week, and the claimant/partner:
– qualifies for the disability element (see below); or
– is in a couple with a child/qualifying young person, one partner works at least 16 hours, and between them they work at least 24 hours, a week; or
– is in a couple with a child/qualifying young person and one partner works at least 16 hours a week and the other is entitled to carer’s allowance or getting certain disability benefits or is in hospital or prison; or
– is a single parent; or
– the claimant is aged 60 or over.

Otherwise a claimant may qualify for WTC if they are aged 25 or over and work at least 30 hours a week.

To get the disability element included in the calculation for WTC, the claimant/partner in work must have both a physical or mental disability that puts them at a disadvantage in getting a job, and be getting (or be recently in receipt) of a ‘qualifying benefit’.

Qualifying benefits include any current award of Personal Independence Payment (PIP)or Disability Living Allowance (DLA).

A ‘severe disability element’ is part of the WTC assessment where the claimant or partner gets PIP daily living component at the enhanced rate, or DLA care component at the highest rate.

The House of Lords made a significant stand in forcing the Government to roll back on some reforms to WTC. But some cuts will still be made to tax credits, and to its replacement, Universal Credit. But, as always with welfare benefits, the sooner that claimants can establish their entitlement to tax credits the better off they are likely to be.

Are today’s attitudes any better than those in the past?

In the last of the series ‘Meet the Historian’ Community Living’s Arts Editor Simon Jarrett explains how a startling discovery in a hospital file set him off on a historical journey.

As a young nursing assistant in the 1980s, I began work at a small, all-male ‘mental handicap’ hospital. Many of its elderly patients had been admitted as children, in the 1920s and 1930s. I read through the file of G, an elderly man who had lived on the ward for over 65 years. The notes of his admission, aged six, began: ‘G is a bat-eared cretin.’ I recoiled at the harsh and degrading language, used to describe a young child entering a strange and forbidding institution. I wondered where it had come from. I wondered also why the medical terms of sixty years earlier were now the language of abuse and insult.
During the sixty years G had lived in the hospital life outside had changed dramatically. There had been the General Strike, the Great Depression, World War II and the Holocaust, the birth of the NHS, the Cold War, the Swinging Sixties, the Vietnam War and Thatcherism. Yet in all that time life for him and the other men on the ward (or ‘boys’ as they were known) had changed very little. As the world had changed outside, George and his fellows had grown old following the same routines; eating the same three stodgy meals a day, bed at 7.30 each night, up at 6.30 each morning, passing the time each day. It was a strange Peter Pan existence, never allowed to progress or develop – no wonder they were called boys. G came into the world ‘a bat-eared cretin’ and was never allowed to be anything else. Why?
Lack of curiosity
This affected me, and working in learning disability services in one way or another over the next thirty years, I was baffled by the lack of historical curiosity of the many who worked in the field. What we were doing now was always the best way. The past was wrong, but somehow we always believed we had got it right in the present. We went all the way from ‘Better services for mentally handicapped people’ to ‘Valuing People’, without self-doubt, always certain that this time we had got it sorted.
Which is why I became a historian. I wanted to find and make known the voices of the past, to inform the present. We were beginning to learn a lot about the asylums. But they only began in the 1840s. What about the thousand years of history before them? How did people live then, and how did other people see them? My PhD is about the eighteenth century. It was an age in which those known as people with learning disabilities today were called ‘idiots’ – harsh to our modern ears, and yet this may have been a more enlightened age than ours. People characterised as idiots worked, married, were well-known in their communities. They were, for the most part, accepted for who they were, allowed to be who they wanted to be.
A more enlightened age?
The past may have something to teach us here. Our modern jargon talks about ‘accessing the community’. In the eighteenth century no one needed to ‘access’ a community they were already part of. Being at the heart of community is the historical norm. It is the 140 years of the asylum, and the strange no-man’s land of services we have created today, that are the anomaly.