Why does terminology change – and who benefits from this? According to Chris Goodey, it’s all about power and contempt, and he has psychologists and intellectuals in his sights
What’s in a name?
Once it was idiocy, then it was mental deficiency, then mental handicap, then mental retardation. For most people today, the phrase is learning disability.
However, I keep tripping over something called ‘intellectual disability’. Having started off at the top in medicine, psychiatry and psychology, this phrase is now percolating through the system. It is on the increase, and I confess that publishers have forced to me use it myself, although I always put it in quote marks.
Hands up any reader who would describe themselves as intellectual? No one? An intellectual is always someone who is more ‘intellectual’ than you. But, clearly, if you’re not an intellectual, then you must be intellectually disabled. So why are only a small minority explicitly labelled like this? Who are the intellectuals, if not all of us?
The answer is: the sort of people who have come up with the phrase ‘intellectual disability’. However, psychology is not an intellectual pursuit – it’s a bureaucratic one, a filing system. A bureaucrat’s job is to sort individual items under general headings; a psychologist’s job is to sort individual people into general categories.
An intellectual, on the other hand, in everyday language, is someone interested in the arts, ideas, philosophy, morals and so on, and likes talking about them. And someone with a learning disability as currently defined – not to mention you or I – is no less likely to be interested in beauty or morals than anyone else.
So psychologists and the medical people who adopt their terminology are not really intellectuals in the way the word is normally used. They have turfed such matters out of the nest, so as to replace them with one particular item: cognitive ability, for which they claim top spot. And only an expert in cognitive ability can tell you what cognitive ability is.
Experts and humans
In the academic rat race, this is what defines human beings and their place in the natural world. You are not fully human unless you have it. And, by implication, the more of it you have the more human you are. So a cognitive psychologist is the supreme example of a human being.
Well, it’s a point of view. It’s the point of view of those who are temporarily in the driving seat and have control over other people’s lives. Perhaps, in the light of person-centred planning, their control is diminishing, although the process is painfully slow.
No, I have not had enough of experts. I have just had enough of one particular kind of expert: one who claims their expertise is the core component of all other expertise in all other fields of human aspiration.
No label is an improvement upon another when all it means is a transfer of power from one labeller to the next, and of disdain and contempt for the powerless. Intellectual disability is the latest. Learning disability can carry on being the worst label apart from all the rest.
From label to insult
The story goes that one label is an improvement upon another. It makes it clearer what we are talking about. Or it replaces an insult. This begs the question: can it ever be clear what we are talking about? And why does every new term become at some point an insult?
Even over the past century, there have been more than 50 terms for the same thing. Which makes me ask: is there a ‘thing’ at all? Other than the fact that some people, at some point in history, need more support for certain things than others do.
On the one hand, ‘learning’ suggests something formal, probably to do with psychology; on the other hand, all of us have learning disabilities in some respect. It’s just that some of us need more support for certain things than others.
There’s no denying that the need is real. But this need is created by particular social conditions that come and go. For example, the built environment, lifestyles, and the nature and organisation of work create different kinds of outsider.
People with what we call learning disabilities today would not have been noticed in a rural society in the past. And we do not know what social conditions will look like when another century has passed Ð problems for some people will no longer exist and other problems, for other people, will have surfaced.
Words matter, but physical segregation Ð in assessment and treatment centres, in schools – matters more. An inclusive society wouldn’t have a word of any kind because it wouldn’t have the concept. Without conceptual segregation, there can be no physical segregation – and viceversa.
Chris Goodey is a historian and writes about the history of psychology
A holiday can be an important part of feeling equal to others, and accepted and valued in society – and offer great opportunities for friendship and fun, says Amanda Topps
People with different abilities have been going on holiday together in adapted lodges at a woodland village in England.
What makes their experience different is that they have got together to support each other to enjoy a fantastic break. have organised and led three of these holidays, thanks to support from UK charity Through the Roof, which works in Britain and internationally with people who have disabilities.
Sarah Jeal told me about her recent experience on the holiday: “I love that we all go as friends and everyone contributes something, making us all equals rather than ‘them and us’.”
She is supported via her local authority to live independently and to fund a personal assistant for a few hours each day. What she discovered on the holiday was a different way of living, which made her feel valued and regarded as an equal.
The person who spent the most time with her on the holiday was a friend, not a paid supporter.
My experience of over 20 years of taking part in holidays for people with disabilities is the equalising factor of spending good-quality time together. Yes, I loved helping people, but I found that, instead of experiencing a ‘do-good’ mentality where I was charitably offering to serve others, I gained far more personally than I had expected.
I found a little piece of heaven on earth – a personal time bank. The start of the wealth I have stored in this bank were the wonderful gifts of humour, grace and generosity that Greta Davies offered me, when I nervously attempted to assist her for the first time on my very first holiday, about 24 years ago. I practically offered her my hands and feet. I stumbled and tripped both physically and metaphorically but, when I landed home exhausted and happy, what I’d learnt was that we all have great gifts to offer each other.
Those on the holidays have given as much to me and more than I had given as a volunteer. I made new friends. I felt accepted. People told me I was good at things. This experience gave me insight into why we all have equal value.
I felt loved, blessed and valued by spending time with Davies. Other people on the holiday built me up and encouraged me to be a better person. I discovered my skills, my abilities and myself for the first time.
Jeal shares: “I think it is good to help each other, whether in a big way or a small way. Apart from helping anyone to do something, it was also good just to talk to and encourage people.”
She, like me, saw the value in doing things differently, and enjoying being human, accepted, loved and valued without the boundaries and infringement of paid professional help.
On arrival at the lodge, the scene is set for everyone to look out for and help each other have a good time together. We work in small groups to make meals, visit places, have fun and take part in activities such as swimming, archery, cycling, tenpin bowling, pottery painting and boating.
Popping into the lodge as a visitor, you may find someone asking someone else if they have their raincoat or swim things or another person offering to carry someone else’s bag on their electric scooter.
One holidaymaker said: “I love to work in a team to make sure a good time is had by all. I can’t do too much on a physical level but verbally I can support people and spiritually and emotionally I enjoy doing this.”
There is a holistic element to this way of holidaying, too. People can get much closer than in a situation where professional care is given. It is not just about practical stuff; there is time to explore personal and spiritual issues and make friends.
Because they are on holiday, everyone is more relaxed. While each person has a holiday plan – a timetable of their chosen activities – I saw people being flexible with their free time so they could support each other and enjoy someone’s company.
It was refreshing to see selflessness, willingness and readiness to put plans aside to help someone. We created a positive, reciprocal environment where equality, humanity and friendship could flourish. Everyone went away wanting to know when the next holiday was. I went away wanting to know how to do this more.
Amanda Topps welcomes enquiries about the holidays. Email: amandatopps@hotmail.com
Everyone has music in them, and the Music Man Project is taking out this message, staging concerts and offering lessons at home and abroad. Natalie Bradford tunes up
Adults and children with learning disabilities at home and abroad are learning music and performing in well-known venues, thanks to what started out as a small, local project .
The Music Man Project (MMP), the UK’s first music education service for people with learning disabilities, runs classes six days a week in various locations throughout the UK and overseas. It has a not-for-profit franchise model, and is supported by Southend Mencap.
It started in Southend in Essex and was the innovative vision of former deputy head teacher and musician David Stanley.
MMP developed as a result of a growing demand from parents and families for musical opportunities for people with learning disabilities. The main MMP ethos is that there is innate musicality in everyone and, through accessing this, much can be achieved on a variety of levels.
We aim to provide education, performance and fun in a highly supportive environment that is open to anybody with a learning disability. This is through the teaching of originally composed repertoire at: special schools and colleges; care homes; the Saturday Music School; weekly lessons for adults; and workshops in locations including the Royal College of Music in London.
The Saturday Music School was set up back in 2001 for a small group of young adults with learning disabilities. The sessions grew in popularity and it quickly became apparent that it was not sufficient to meet the huge demand for musical opportunities of this type.
So, in 2012, the Saturday Music School started running six days a week Ð and this was the start of today’s specialist full-time music education service.
Since its expansion in 2012, MMP groups have been established in Essex, Kent, Suffolk, East Sussex, Hampshire, Lincolnshire and Bristol, as well as overseas in Sizanani in South Africa and Bangalore in India.
Workshops and concerts have taken place in West Sussex, Surrey, Gloucestershire, Tyne and Wear, Cheshire, Lancashire and Northern Ireland.
lessons
Several more MMP groups are in the pipeline which we are visiting as time allows. One of my roles is to help these new groups. We offer training for staff and ongoing support and mentoring for any group wishing to join the MMP community.
MMP aims to provide the same musical opportunities to those with learning disabilities as those experienced by aspiring musicians without learning disabilities – although teaching styles and time frames may differ to suit individual needs. We provide high-level tuition by highly qualified musicians with special educational needs teaching experience.
Singing, a variety of musical instruments, including drum kits, percussion, African drums, ukuleles, glockenspiels and hand bells, originally composed repertoire and performance opportunities are standard parts of the MMP curriculum. Performances can be seen at a variety of venues, including prestigious concert halls, in London and further afield.
Our most recent large-scale production, Music is Magic at the London Palladium, played to a sell-out audience of over 2,000 people, including HRH the Countess of Wessex. More than 200 students with learning disabilities from around the UK performed and a Guinness World Record for the largest ever triangle ensemble, made up of 1,521 people, was set.
I have first-hand experience of setting up centres and was the first tutor to venture outside Southend to organise an MMP group in a small town called Maldon on the Essex coast.
MMP Maldon is now a well-established group of students, who are accomplished musicians and confident performers. They have performed widely, both with the Southend students and on their own. MMP Maldon has also joined with other MMP centres for larger shows.
It has been heartwarming to see how music has transformed people, some of whom have never taken part in a concert before, let alone stood on the stage at the London Palladium as a performer.
Indian summer
Two of the most exciting venues I have been directly involved with have been South Africa and India – it was amazing to see how music can cross barriers and reach directly into the personal experiences of those taking part, audience members and musicians alike.
in Bangalore
Our most recent overseas trip took place last summer to Bangalore in India. This was a big challenge as we faced language barriers, cultural differences, extreme poverty and more.
We need not have been concerned. We were warmly welcomed by schools and homes for adults. Staff were receptive to our teaching and we have kept in regular contact. There is now a young, dynamic musical coordinator in Bangalore who has started organising at least three groups since our visit.
One touching comment was that the music session was ‘the most joyous time we have ever had. We couldn’t believe how much they have opened up when they have spent their whole life being told to be quiet.’
Music really does have the power to enhance lives and a positive impact on those with opportunities to experience it.
Performance
Music Man performers who will appear at the Royal Albert Hall
Our performances, whether at the Royal Albert Hall or a local nursing home, aim to educate wider society about the journey towards equality of opportunity for people with learning disabilities. Our first show at the London Palladium in 2015, included the musical From the Asylum to the Palladium, which followed the journey from the harrowing days of the institution to where we are today – and showed how far we still have to go. As it was acted by people with learning disabilities, you can imagine how powerful this message was.
Through inspirational performances such as this, we are challenging common misconceptions about what people with learning disabilities can or cannot do. We have only the highest aspirations about what our performers can achieve – first and foremost, they are musicians.
MMP has won many awards for its unique work. It was deemed ‘outstanding’ by Ofsted, which commented on the exceptional opportunities it provides. The Royal College of Music has described our work as ‘truly inspiring … the power of music to bring everyone together was very apparent’. It has been praised by previous and current prime ministers. For its pioneering work, MMP reached the finals of the Music Teachers Award for Excellence twice in the past three years and won the 2016 Kids Count Inspiration Best Creative Contribution award.
More importantly, MMP makes a real difference to people’s lives. It develops the musical instinct that lies within us all to instil confidence and self-esteem, providing enjoyment and a much-needed opportunity for emotional expression.
MMP is supporting PhD research at the Royal College of Music on the wellbeing benefits of music participation for people with learning disabilities. Much anecdotal evidence shows the wide-reaching positive effects of music but there is a serious lack of empirical evidence. This pioneering study will offer a valuable insight into this specialist area.
MMP is excited to be performing at the Royal Albert Hall on 15 April. This looks set to be an amazing experience for both performers and audience and is a dream come true for everybody involved. Rehearsals have been under way for well over a year.
This will be a truly remarkable event and not just for those with learning disabilities or with an interest in the field. Our biggest adventure, it will be a wonderful evening of music making of the highest quality. Our students show rare levels of commitment and determination.
We would love to see you there to share in this joyous occasion, which marks another landmark in the journey of equality for people with learning disabilities.
A facility that supports adults and children with multisensory impairments and complex needs also offers opportunities to the whole community, writes Rebecca Hodgson
TouchBase Pears is a fully accessible, multipurpose building for the whole community in the heart of Selly Oak in Birmingham.
The ethos of the facility is to provide opportunities for everyone, regardless of ability, to come together, learn new skills, meet people and to be an active part of their community.
TouchBase, which opened last year, is run by charity Sense, which has been supporting people who are deafblind and those with complex needs, as well as their families, for more than 60 years.
Services for adults and children run from the building include a specialist college, children’s groups and day services. TouchBase Pears also hosts arts and wellbeing sessions for those with and without disabilities and offers employment and volunteering opportunities to local people so they can gain and develop skills.
Within the building’s public spaces are the Selly Oak local library and a friendly, fully inclusive cafe that hosts social and support groups, including those for families and siblings and a coffee morning with communication in British sign language.
For those who find new experiences difficult, familiarisation sessions are held where people are introduced to the building at quieter times.
TouchBase offers a varied programme of activities for the whole community including theatre productions with relaxed performances, sensory story time, messy play and sensory play and a sing and sign choir for newcomers and experienced signers alike.
Sense believes and promotes the idea that everyone has the right to enjoy creative, social and active opportunities, which are vital for living full, rich and engaged lives. The TouchBase offers a host of arts and wellbeing activities organised by an in-house team of artists and facilitators to run sessions, including dance, drama, yoga, gong therapy, pottery and massage, to name a few.
By working with other disability and arts organisations, we are able to share skills and experiences to deliver the best possible support, and work with others to trial new programmes and technology, such as the use of SubPac audio systems, which translate sound into vibration, offering an immersive experience.
These sessions are made fully accessible by tailoring them to the specific interests, needs and wishes of the people who take part. This is done in a number of ways, such as offering deafblind communication awareness, consultation with those taking part in the sessions and inclusion training to arts practitioners who deliver sessions. This enables genuine, creative collaborations with people who have complex needs.
All sessions are planned with consideration given to the environment, communication and mobility by using outcome-focused planning and evaluation tools. Through understanding the needs of individuals, we can tailor experiences to ensure people can be as engaged as possible and participate fully.
Stay and play
Sense’s specialist services for children and young people host and support a number of initiatives and projects based at TouchBase Pears.
One of these is a ‘stay and play’ group for children aged 0-5 years who have a combined vision and hearing impairment (multisensory impairment or MSI) and those who have a single sensory impairment with additional complex needs. This group is designed to bring parents together in a safe environment.
Many families have tried more general sensory sessions. However, they comment they can find these difficult and isolating because their child is often the only one with sensory impairments and cannot keep pace.
The groups at TouchBase Pears are run by MSI-trained children and family support workers and a specialist MSI teacher. They offer advice and early intervention for the children and their families, and engage with other professionals who are often supporting families.
The sessions and activities on offer start with the child and consider how best to stimulate and engage them. Parents can receive practical support in modelling and advising around communication, stimulating and functionally assessing vision and hearing, and creating suitable environments for play.
Teen social
At the same time, we host a teen social for young people craving more independence, space and the opportunity to socialise. This group continues to grow from strength to strength and has helped teenagers develop social relationships outside school, which is often difficult as they use school transport so get less time for informal interaction with their peers.
Because of the effects the facility has had, some young people have been supported to gain work experience at TouchBase. We have also supported them to learn the route to TouchBase as part of their mobility training.
TouchBase continues to develop and grow in response to the needs of those who use it and the community it sits within. Next year, an employment project will be set up to support people with disabilities to gain work experience and skills, and to support people into paid employment and voluntary roles.
There will also be a new programme of inclusive childrenÕs theatre, as well as more inclusive social groups for both adults and children.
t @touchbasepears
f @touchbasepears
See the programme of activities at www.touchbasepears.org.uk/whatson. Anyone interested in finding out more about TouchBase Pears is welcome to visit.
Rebecca Hodgson is practice development team manager at Sense. Email: rebecca.hodgson@sense.org.uk
Jackie Downer MBE has spent much of her life supporting other people with learning disabilities, as an advocate and through working for People First. She tells Sean Kelly about being strong, the importance of work and setting examples to make integration normal
Jackie Downer’s commitment to change is well caught in her questions: ‘Are we really making a difference? How do we know? What can we do to do better?’
Despite these comments – quoted on the website of learning disability training and development agency Paradigm – Downer is modest. ‘I describe myself as an OK person, being nice to people, beng fair, and trying to help people with learning disabilities in the community, and other people as well. Trying to change the support for people with learning disabilities. I am an advocate. I’ve been doing it for many years now – 20 years.’
She is accompanied by a support worker, who says: ‘You’ve been doing it since you were aware of the need to change things.’
Downer remembers becoming aware of the need for change at an early stage. “I remember going to college in Lewisham and this person had learning disabilities and I was trying to support her and she was just holding my neck. I thought she was going to wring my neck off.
“And I realised that people with learning disabilities have got a right to do what they can do. She couldn’t use verbal communication …. but she could communicate in her own different way. The way she was wringing my neck … She never meant to wring my neck. I said she’s got a right to be here like anybody else. She just communicates in a different way.”
Downer went on to work for People First and other advocacy groups then became a national self-advocate and consultant.
As a black woman with learning disabilities, she has had to be strong: “I have tried to be strong but I was working for an organisation and they were not very nice. Some workers are not nice and it can affect you.
“I found some strength to carry on because now I am working for other organisations. They are giving me a chance to say I can work and I can do things – like working for Unicorn Theatre and doing childcare. Working makes the difference in people’s lives. It has definitely made a difference in my life.”
Her support worker highlights that Downer was the first person with learning disabilities employed by Unicorn Theatre and this set a trend – they have employed others since.
Downer grins: “I am so happy. We have people with Down’s syndrome. All kinds of people work there. It is people with learning disabilities and people without. We are mixed. And the public can see that.”
She also works as a childcare assistant but she is disappointed that she lost her Access to Work support. “They took away the money. It was horrible to lose the support. What did I do?”
Her worker explains that her earnings did not meet the threshold and that she had been receiving support for nearly 20 years. “But what can I do?” says Downer, “It’s not my money.”
Her other work includes coauthoring Books Beyond Words publications such as Speaking Up For Myself and Keeping Healthy Down Below and she is working on a new book with them. She finds Books Beyond Words are good to work with: “They involve people with learning disabilities from day one.”
Downer is not doing any other work with or for people with learning disabilities at the moment. “I am not in the movement like I used to be. The work is not there. And I am not pushing myself like I used to. Things change,” she says, before adding: “I am doing other things. I am a childcare assistant. The person believed in me and gave me a job.”
Awards
Downer has received some major recognition for her work, including an MBE, awarded for ‘supporting people with learning disabilities in London’. She also has lifetime membership of Learning Disability England which similarly recognised her outstanding work.
Downer was given lifetime membership of Learning Disability England for her outstanding work
“Yes I was happy with that,” she says and then adds, with her usual modesty, “I was just being myself, being Jackie, and campaigning for people with learning disabilities.”
Does she thinks things are getting better or worse for people with learning disabilities? “It’s getting worse in some respects, because of the cuts. The youth service, elderly, ethnic minorities and people with learning disabilities – the funding is not there for anybody. I think it’s harder for everybody.
“The funding is not there like it used to be – like for People First, advocacy, and they used to go out and do things”.
She still feels positive, though. “People with learning disabilities give me hope, because people are doing things. We’re out on the street and we’re doing various things and I think employment is getting better. I have got employment and I mix with other people.
“I can do certain things and certain things I can’t do. Like with the Unicorn Theatre, I know that some people with learning disabilities can’t do the till but we can do other things.
“And when I see that, when I see people integrating, it gives me hope. My support workers and other family members give me hope as well. I achieved certain things and I need to learn from my achievement but I am happy.”
“Working makes the difference in people’s lives.
It has definitely made a difference in my life”
Benefit blues
Before this interview, Downer said she wanted to talk about her experiences with universal credit. “All I can say is they don’t know what they are doing. How can you go to two doctor’s appointments?” she says.
Her support worker explains she underwent two assessments in error and there were problems in how she was given information about her benefits assessment. Despite having received an apology from the Department for Work & Pensions, Downer is still waiting for an appeal hearing almost a year later.
Universal credit nearly broke her down. “I was crying on the phone. How can somebody say, ‘We are going to stop your benefits’ while I am crying on the phone?” Meanwhile, her housing benefit is discretionary, which is another concern.
It does grind you down,” she says. “You get depressed. They have got the power. What can you do?
“And who makes the money at the end of the day? Not the people with all kinds of physical disabilities or mental health or anything. The doctors that see you are getting £60 or £70. They are making the money.”
Her small team of support workers, some voluntary and some funded, are ‘a lifeline’. She recognises they too have needs: “They have all got their own different kinds of need and different kinds of ability but definitely they are 100% and I am so happy. Some of them are young and some of them are older and they are really good.”
Downer mentions one of the staff in the local job centre who has also been supportive.
Does she think people are more aware of those with learning disabilities than used to be the case?
“I think so. I think it’s getting better. I see people doing more things now and going out in the community more. And doing activities and working. Before, we never used to do that. I know certain people are doing the [supermarket] trolleys still … but they are still working.”
Another chapter
Downer says she and others her age, are looking forward to the next phase in their lives. She means getting older.
“Our bodies are changing. It’s another chapter. Are we going in a care home? That’s the future. That’s the finishing off.”
As a part-time worker, she worries about getting a pension. However, she recognises she has done better than many of her peers. “Some of my friends haven’t worked since they left school.”
For a message, she recommends the song Something Inside So Strong by Labi Siffre. “If you listen to that, you will continue going on with what you’re going on,” she says. “The words say it all. It makes people strong. Anytime I think about it, I take the courage.”
As Siffre suggests, people should grow taller if others build barriers, and respond to their rights being taken away by running even faster, driven by an inner strength. It is certainly what Jackie Downer has done for her whole life.
Sean Kelly was chief executive of the Elfrida Society from 2001 to 2012 and is now a freelance writer and photographer
Prejudice and a lack of support means that parents with learning disabilities may have to deal with their children being taken into care. Ali F Jabeen describes how the Elfrida Society’s Parents Project helps them to be successful parents and makes some recommendations
When considering child protection cases and care proceedings, UK family law courts rely upon evidence from the child’s social worker, doctor, guardian and psychologists.
The local authority enters the courts to win and so do the parents. All agree the welfare of the child is paramount, as well as the child having her or his rights met.
The social worker writes a report following a standard process. In most cases, they will not have paid attention to the fact that the parent does not understand why a social worker is intervening in their family life.
As soon as the social worker can see there is a lack of comprehension, the question they should be asking themselves is whether the parent has a learning need that means they require additional support to understand what is happening.
If the answer to this question is ‘yes’, an immediate referral needs to be made to have an advocate for the parent to prevent any further misunderstanding. The parent can be referred to local support networks while the social worker needs to work with the family.
The case may have to go to court. Parents need to be offered every chance of success, which means they need to understand why this intervention is being made.
In an ideal world, each local authority would employ specifically trained social workers who can support parents with learning disabilities. More time could then be allocated per case on the basis of the level of need for reasonable adjustments.
A social worker would be allocated for long-term family support (not six-month stints as is currently the case). This would avoid short-term interventions that are intended solely to close the case, thereby gaining a statistical outcome for the authority.
Parents need to be supported to become successful parents until their child is 16 years old at least. In our experience, we have found most parents with learning disabilities can be successful parents if they have the right guidance, support and advice.
Reunited after 10 years
I have been the advocate in a case where a mother’s 14-year-old son was returned to her 10 years after both her sons had been taken into care, after the school teacher called in social workers.
The teacher felt the children were neglected by the parent because she had learning disabilities and believed they had left home with soiled clothing. The mother had argued that the clothing had been soiled in the school playground after she dropped them off before classes started.
The mother experienced traumatic court proceedings which led to her sons being taken away, but she did not give up. She believes she lost her sons purely because she has a learning disability.
She has taken part in the Elfrida Society parents’ peer support group for the past 10 years and acquired parenting techniques via accredited, adapted parenting programmes. She kept up supervised contact with her sons twice a year, no matter how distressing this was for her.
The support she received from her peers was priceless over the years, she says. The Elfrida Society as a whole became her community; she was not alone and could be herself. She had advocacy support in all its forms, including group activity, campaigns, political rallies, dialogue with professionals, media attention and taking part in radio shows.
When she had to complete the PAMS assessment (a guide used by social services to work with and assess parents when there are child protection concerns) this time, she knew what she had to do. She passed with flying colours.
“Professionals had assumed she could not be a parent,
as she had been in care and had a learning disability”
In another case, B, a young mother who was supported by Elfrida, was able to build a family. She had been allowed to keep her third child after her two previous children were removed.
Growing up, B had been placed in care herself with a diagnosis of learning disability and hearing impairment. There was a general assumption by professionals that B did not have the ability to be a parent, based on her history of being in care and having a disability.
The social workers assigned to work with B knew her when she was in care. Their communications with her indicated they did not respect her views, and were not interested in learning about B’s growth and learning throughout life.
B then had a fourth child. This time, thanks to the support from Elfrida, she was able to win her fight with the local authority in court and keep this child.
In summing up, the judge on the case stated the support from the Elfrida Society Parents Project peer support group and the specialist advocacy service had ‘been invaluable’ for this young mother’s success.
The judge encouraged the local authority to continue to pay for a further three months of one-to-one support from the Elfrida Society Parents Project.
Although the local authority social worker found a reason to stop funding the advocacy support, B continues to access support via the peer support group and parents’ drop-in sessions at Elfrida.
The confidence this mother has gained now gives her a sense of a brighter future. She feels she can work towards seeing her two older children (who are still in care), now that she understands what she needs to do.
She is now a successful parent with a learning disability, who knows who to go to and who to ask when she does not understand something.
While B’s experiences of social work interventions so far will make it difficult for her to ever trust a social worker again, with our support we are confident that she will gain a better understanding of why they might intervene in her family life in the future, and how to get the best out of those situations for everyone involved, particularly her children.
A call for justice
For justice to be done, we need a radical change in both the culture and practice of social work. We propose:
Development of specialised social workers who know how to work with parents with learning disabilities
Social workers must understand and appreciate the important role an advocate plays in achieving the best outcome for the children and parents
Social work students who wish to specialise should be encouraged to learn about learning disabilities, in particular how to apply the Equalities and Human Rights Acts in practice.
Promotion of the value of specialising in working with parents with learning disabilities
Local authorities should prioritise finding a way to keep families together rather than focusing on learning disability as a hindrance to successful parenting
Recognition of the value of early, appropriate support and the need for extra time to process information
We need to ensure no stone is left unturned in ensuring the child’s right to stay with their parents is met.
Justice
The Elfrida Society has learned over the years that advocacy support for people with mild to moderate learning disabilities becomes even more important when they become parents.
Parents with learning disabilities who have had their children taken into care may not all get the justice we have learned how to fight for.
The whole Elfrida community is instrumental in the success of a parent with learning disabilities, expressed through peer support in our weekly support groups.
My experiences as an advocate have included some light bulb moments, revealed, for example, in the look on the face of the social worker the moment he or she realises what could have been done differently, or what could have been put in place in the form of support from the start.
Not all social workers want to follow a system that is blind to the needs of families where a parent has a learning disability. Some social workers try to put the right support for parents in place but, in many cases, risk their recommendations being dismissed or rejected by managers who are looking at immediate ways to cut costs rather than long-term savings (both financial and emotional).
Many managers also hold on to outdated practice methods, which in some cases conflict with basic human rights.
We need to establish a better system and improve understanding on the part of all who work with parents with learning disabilities to achieve justice.
This will begin with professionals going out of their way, adjusting their practice and putting aside what they think they know.
Professionals need to learn from the parent, and understand that each case is different. To do this, they will need to learn the value of the advocate, who can understand the individualised support and communication that needs to take place between professionals around the family…..
Ali Jabeen is operations manager for the Elfrida Society Parents Project, which provides a specialist advocacy service https://www.elfrida.com/parents
This article is the second in a two-part series on the Elfrida Society’s Parents Project, which provides support and advocacy for parents who have learning disabilities. The articles examine the good practice it is developing and some of the challenges it faces.
Planning and purchasing: shifting the cost to the client
There seem to be a few tricks being played on the local authority side in adult learning disability care planning and purchasing. These need to be called out, says Belinda Schwehr, who explains three common ruses
This article is the second in a two-part series looking at the most troubling issues in health and social care law and practice seen at CASCAIDr. Part one in the previous issue (CL 31:4) examined problems with due process
Local authorities seem to be adopting tactics that appear underhand around planning and buying care and activities for people with learning disabilities.
These include shifting the cost of activities to personal allowances, reorganising staffing ratios so people have to top up payments for activities, and saying eligible needs have been met by low-level underlying support contracts.
Activities funded out of a personal allowance
This arises where a care home (or a prospective alternative provider) is persuaded by commissioners to drop their price or lower their tender.
Usually this generous move, fuelled by concern about competition or loss of a client, is justified by an agreement where the commissioner removes previously paid-for activities from the contract specification, and the provider removes them from the support plan.
Generally, it is the cost of the entrance into the activity itself that is being cut, not the support that goes with the activity. However, because the provision was previously ’24 hour care’, providers had paid for those activities out of the contract price. After all, it was not the client who was making any contractual arrangements with anyone for any entertainment, day care or stimulation – it was all part of their entitlement, by way of care planning, through the council.
“If a commissioner wants to change provider and
impose that on a client, the care plan has to be revised”
Of course, this sort of a change is easiest done when someone is moving between care homes, because a service user’s relative assumes that what was included before will be available again. It is then the new provider, rather than any commissioner, who has to explain to the relative: ‘No, sorry, that’s not included in our support plan. It’s ok though, to pay for the activity out of your relative’s personal allowance. If you want to.’
The outcome is that the client’s personal allowance – their £24.90 per week for personal items that are not social care needs at all – is now seen as available to meet what were previously seen as necessary arrangements for meeting the person’s assessed eligible needs. So most people’s relatives who are undertaking the role of appointee say ‘yes’ to that suggestion, then end up paying themselves for the person’s toiletries and clothing.
Clever, eh? No doubt highly paid consultants have come up with this wheeze – but it is not lawful.
The vast majority of relatives do not know that, if a council’s care plan is revised so as to make a large change to provision to meet need, the service user is entitled to due process and a rational and transparent consideration of whether their needs have changed.
In our scenario, the needs have not changed at all, but the inputs for the person have changed – either because the provider has produced a different internal support plan or because the local authority has not met any resistance in issuing a new Care Act care plan.
Hopefully, from the council’s perspective, the new plan will not look too different from the previous one, which was probably expressed in a fluffy outcomes-focused way, with some wording along the lines of ‘happy, safe client … 24 hour care….’.
The Birmingham ex p Killigrew case, which predates the Care Act, established the proposition that if a council is going to say that a person’s needs have changed, to justify a cut in the budget/plan, there has to be a rational articulation by a professionally competent person explaining where those needs have evaporated to.
If a local authority commissioner wants to change provider and impose that on a service user, the council’s care plan has to be revised – and only after a lawful proper assessment. Anything that was considered necessary previously to meet need, but is no longer being offered, has to be analysed as to:
What need did it actually meet?
Does that need still exist?
How should it still be met?
Resource difficulties are not relevant to whether a need is met, only to the means. Whatever is in a care plan has to be delivered in kind, if not exactly as it is written, unless or until a lawful reassessment and plan have replaced those previously in force.
“since the activity is more intensively staffed than clients
need, they will have to top up, if they want to take part”
Activities that are too highly staffed for the person’s needs, so they have to top up
This wheeze involves a council getting together with a provider offering day care as part of the commissioned care package.
The clients might be in a care home or in supported living; the essential point is that activities are included in the commissioner’s contract requirement.
In a contract review – well out of relatives’ sight after the commissioner has negotiated a massive cut in the overall payment to the provider, the provider will be invited to say what the staffing ratio for those activities is. This could be, for example, one staff member to three service users.
The provider will then say it has been agreed with the council that service user A is of a higher functioning level than ‘the others’ so needs supervision only on a 1:4 ratio, while that service user B is presenting less risk than before, and will be fine with 1:5.
The outcome will be that, since the activity being provided is more intensively staffed than service users need, and the council only funds needs and not wants, well, if they still want to take part, they will have to top up, privately…
Where the client is charged by the council for the provision of the activity as part of their budget, I think that the client can properly say that they need to claim that extra cost as disability related expenditure, even if it is not an eligible need. It is still a need, even if it is not eligible, because one cannot send only a portion of oneself to a day care place.
I can think of no reason why this is unlawful, as long as the care plan is properly revised and the council therefore knows the provider is making this private charge.
Unlike care home top-ups, the payment will have to be made by the client to the provider rather than to the council.
However, if the council is not told and is paying the provider the whole fee for the activity, then it is just plain double charging and fraudulent. This is because it is charging two people for the same thing, the council on the one hand, and the service user or relative on the other.
“A slight change in how needs are described justifies
providers using cheaper, unregulated support staff”
Eligible needs met by low-level underlying support contracts
A variation on the above theme, which I have come across recently, is this: the service user is assessed with Care Act paperwork, and inabilities to achieve are found along with significant impact, so there is eligibility. But, when it comes to care planning, no budget is provided, because the need is regarded as met by something else.
That something turns out to be an underlying, separate contract with the provider – paid for by the council, not as an individual service agreement but rather through a block contract for all the clients to receive a standard ‘wellbeing’ or welfare service, rather than an individually commissioned contract for each person’s eligible needs.
Sometimes, there is a clue as to this sort of a device: you might find that the service user has a tenancy in a housing association where the provider is or used to be the housing management service for the landlord, when Supporting People monies were available. That company may not have been a registered provider with Care Quality Commission at that point, and might not have registered when it became a requirement to do so if the service involved ‘prompting together with supervision of personal care tasks’. (This requirement made most Supporting People providers offering care in the home into registrable entities.)
Whatever the registration status of the provider, you find that the service user will have been freshly evaluated by the provider to need only prompting, rather than prompting together with supervision. This is a clue that supposedly eligible needs will be met by something other than by a Care Act personal budget, because prompting together with supervision counts as registrable personal care that must be done by properly regulated workers, who tend to cost more than mere support workers.
Mere ‘prompting’ does not require a provider to be registered with CQC, and can be provided by unregulated workers, even in an organisation registered for the provision of personal care. So this slight change in the way a person’s needs are described by the provider justifies the employment of unregulated support workers who are paid less than those who are regarded as delivering ‘care’.
In this way, the provider can offer savings to the commissioner. Also – and this really matters for the work my organisation CASCAIDr is doing – there is no enforceable right to any particular amount of ‘support’ outside the Care Act, as opposed to care and support inside this legislation. Public law principles do not and cannot do much to preserve whatever is being paid for, when next year even further cuts are made, all over again.
This explains – does it not? – why commissioners in many councils are so obsessed with the idea that supported living is a different service to home care. Such devices are being used to thin out people’s Care Act personal budgets.
Belinda Schwehr is chief executive of legal advice charity CASCAIDr (www.CASCAIDr.org.uk) and owner of the Care & Health Law consultancy. She has been a barrister, solicitor advocate and university law lecturer
News that overpayments may be clawed back and fears of prosecution highlight the complexity of carer’s allowance. Charlie Callanan explains some complicated rules.
Alarm has been raised in the carer community following reports that the Department for Work and Pensions (DWP) is looking to recover payments of carer’s allowance to which some claimants were not entitled.
A report in The Guardian suggests that, following investigations by DWP, more than 1,000 claimants could be prosecuted for benefit fraud while 10,000 carers could receive fines. In either situation, the claimant is likely to be ordered to pay back any overpaid benefit.
One of the main reasons the overpayments of carer’s allowance occur is that when a carer takes a paid job or their hours and earnings increase, they fall foul of the rule on earnings in this benefit. The rule is that a claimant cannot get carer’s allowance at all if their take-home earnings are more than £120 per week. If their earnings are £120 or less, they can get the full allowance. Starting full-time study may also end entitlement to carer’s allowance.
Carer’s allowance is not a means-tested benefit so, unlike benefits such as income-related employment and support allowance (ESA) or universal credit, an assessment is not made of all the claimant’s income and savings. Income other than earnings over £120 and any capital are disregarded. Because the rate of the benefit is so low – just £64.60 a week Ð it may be that some carers mistakenly believe they don’t have to declare their earnings.
Missing out
Of course, there may be many more eligible carers who are missing out on claiming carer’s allowance than those who have allegedly been overpaid benefit.
Some people who qualify may also get the carer premium that is available with some means-tested benefits or the ‘carer’s credit’ towards national insurance contributions.
The main qualifying rules and conditions stipulate that, to get carer’s allowance, a carer must:
Be aged 16 or over
Look after someone who gets a qualifying disability benefit. These include the daily living component of personal independence payment, the middle or higher rate of the care component of disability living allowance, or attendance allowance
Care for a person for at least 35 hours a week
Not be in full-time education
Not earn over £120 a week, after deductions for income tax, national insurance and half of the contributions towards an occupational or personal pension
Satisfy UK presence and residence conditions.
The time spent caring may involve the carer physically helping the person, keeping an eye on them to avoid them getting into danger or giving them practical help such as cooking.
If a carer is studying, their course is likely to be considered full time if their university or college describe it as full time or if they are required to study for 21 hours or more a week. However, this can be a grey area, so any carer in this position should seek advice.
A person who has a disability can act as a carer and claim carer’s allowance. So, for example, both members of a couple may be able to claim it for looking after each other.
Caveats around claiming
Anyone thinking of claiming carer’s allowance should always get advice beforehand. This is because, if it is paid to a carer, the benefits of the person being cared for can be reduced.
Then there are rules called the ‘overlapping benefit’ rules, which mean where the claimant is a carer but already gets a benefit based on their national insurance contributions (eg contributory ESA), they cannot get carer’s allowance at the same time. However, they may still get a carer premium in any means-tested benefits to which they are entitled.
Carer premium is extra benefit that is part of the assessment for income-related ESA, income support, income-based jobseeker’s allowance and housing benefit. The universal credit equivalent is the ‘carer element’.
To get the premium, claimants must get or have an ‘underlying entitlement’ to carer’s allowance. Underlying entitlement means that a claimant qualifies for carer’s allowance but cannot receive it because they get an overlapping benefit. It should be noted that the claimant must still apply for carer’s allowance to get a letter confirming underlying entitlement.
“Payment of carer’s allowance to a carer can mean the
benefits of the person being cared for can be reduced”
Carer’s credits are national insurance credits that can help people to meet the contribution conditions for certain benefits, including the state pension. Carers can get a class 1 credit for each week in which they get carer’s allowance. A carer who does not qualify for carer’s allowance may still be able to get carer’s credit if they are looking after a person for 20 hours or more per week.
This summary attempts to make the rules on claims clearer. However, trying to explain the conditions for claiming carer’s allowance demonstrates just how complex the rules are. To avoid overpayment of any benefit, we need to reinforce the message to seek expert advice before making claims, and when circumstances change.
Matthew Garnett is making the road trip of his dreams, ticking off visits to dozens of football grounds, just a year after getting out of an assessment and treatment unit
Hi, I’m Matthew Garnett. I’m 17, I have autism and I like football.
I’m Liverpool’s best fan ever. I like them the most, my favourite player is [Fernando] Torres and I hate Arsenal, they’re rubbish – they always lose.
I know all the teams I like lots, and I need to see where they are, so I got a map that shows where they are. I’m going round the country to see all of them. I have seen 49 so far.
I also will go to Wales to see Cardiff’s and Swansea’s grounds. I will go there in the summer and then I need to see all the ones in Scotland, and the Welsh ones that play in Wales, and Ireland, America, Australia and all the countries in the world.
I saw a game at Liverpool too and at Tottenham. Tottenham are rubbish. Liverpool were supposed to win – it was an accident they lost. I saw where Anfield and White Hart Lane are. So I was sitting with the Tottenham fans and celebrated [when Liverpool scored] and I was the only one and they were cross.
And I saw me on TV close up – I saw a purple coat and I knew it was mine so that is how I knew it was me, and on Match of the Day I was talking loud and I heard me on it.
But there was a boy that liked Tottenham there and he was sitting next to me. I became friends with him – they [Tottenham] are rubbish but we both agreed that Arsenal are rubbish. Tottenham fans don’t like Arsenal as well.
Daddy was there and he saw that it was probably the first time there was an Arsenal fan in the Tottenham fans’ bit at White Hart Lane, and he is an Arsenal fan. I don’t know why. They are rubbish and Arsene Wenger should stay to make them even more rubbish.
I know every team and what league they’re in.
I know everything about football.
I hate Arsenal and they’re the worst team, and so my worst players are [Alexis] Sanchez and [Mesut] Özil and all the Arsenal players.
I need to see them. I take pictures of all the bits – I need to see all of the bits but some ones don’t show the ground. I have a PowerPoint of which ones I have seen such as Liverpool, Chelsea and Crystal Palace.
And there are even more semi-pro ones – they’re rubbish but some are quite good.
Dulwich Hamlet is the closest team to my house – they were promoted into Conference 2. I saw a game there. It should be like it in all games. At semi-pro games you can talk to the players and argue and shout at the referee, and be really close and go on to the pitch. They also let you have a go at goals and you hug and take pictures with them at the end – they’re really good.
The first year of freedom
Matthew Garnett is free and living in the community a year after he was taken out of an assessment and treatment unit.
He asked to tell Community Living readers about his life now, and hopes you enjoy reading about how he is using his hard-won freedom to make his epic football journey.
His mother Isabelle Garnett wrote in Community Living (31:2, 2017) about the struggle to extricate Matthew from the unit, where he was subject to restraint and seclusion and forcibly medicated.
She says: ‘This is a young man who the doctor said ‘belonged in a hospital pure and simple’ and was ‘demand avoidant’. He is a phoenix rising from the ashes.’
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Unexpected chances could arise in the less regulated times of the 1970s and 1980s. Former social worker Gill Levy recalls the stories of three people who gained paid work and a place in society – and what happened to them
‘You might sell more books if I tidied them up,’ a young woman announced. And that was my introduction to Laura Green.
With no further discussion, she carefully laid out the children’s books on my stall in the antiques market. ‘There,’ she said, ‘Much better,’ and I agreed. Then she sort of adopted me and took responsibility for the children’s book table.
Every Sunday afternoon, she would help me on my stall although nothing was ever formally agreed. She carefully told me she had learning difficulties, making sure that I knew what that meant.
She regarded helping me as a way to find out about the world of work, having got bored at her day centre. She did not want to be paid although I insisted she took a book home to join her fast-growing collection of early Ladybird books.
One day she did not turn up. She sent her father to tell me she had just started a job in a ladies’ clothing shop nearby. She had to unpack newly delivered stock, stack shelves and rails in order of size, and clean and tidy up generally. Her work included ensuring there were essential things (such as light bulbs) in the shop.
Her father was delighted but very anxious that things might not work out. She had told him that she had learned most of the skills needed for the job on my stall.
Green came to see me a month later. She had lost weight (‘without dieting’) and was wearing smart new clothes. Her confidence had soared and she told me her parents were finding it hard to accept ‘the new person. After all, they had the old me for 33 years.’
She no longer thought of herself as having a disability as she could do everything ‘un-disabled people can do’. I thanked her for helping me for months and she thanked me for ‘training’ her – which I was not aware I had done.
She returned to the day centre to see her friends and was seriously encouraging them to think how they might get jobs. She had tried to get the day centre to prepare her for work but, in the end, had successfully prepared herself.
‘I like the new me lots better than the old one but I do worry about my mum and dad,’ she said.
Found and lost again
Rosie Windham’s mother had been a cleaner at the local pub for many years. When Windham left the ‘dippy school’, she joined her mother at work and they could be heard cheerfully singing as they worked.
Then, the mother – who was elderly and Windham’s only relative – had a heart attack at home on Christmas Eve. The neighbours called an ambulance but she died while the paramedics were there.
Windham was devastated. But, on Christmas Day, she went to work as usual. ‘A job’s a job,’ she told her employers. ‘You couldn’t possibly have a dirty pub today of all days. Mum would be so cross with me if I let you down.’
The pub owners took her on as an employee. She worked all day and stayed in the pub until closing time. Regulars became her family.
The owners handed the pub on to their son and daughter-in-law who didn’t need a cleaner. Windham was devastated but continued drinking at the pub for many years until it closed. ‘I didn’t know what else to do,’ she said.
I met her when she was in her 70s, newly admitted to a psychiatric ward with severe depression and alcoholism. She had lost her mother, job, friends and social life: ‘There was nothing left.’
A life-changing call
I was on duty at social services in the early 1980s when a father and son came in. Sam Smith explained that he was retiring soon and was worried about his son John.
Some years before, Sam had had a heart attack and could no longer carry heavy things. He had asked his employers if John could help him. The firm agreed but payment was never discussed. So John worked full time at the warehouse and Sam gave him some money each week.
Sam assumed his son would need to go to the day centre as no one would employ him. He stressed that John had learning difficulties, spoke with a lisp and walked with a marked limp.
I timidly asked Sam if I could ask his manager about employing John. He thought this a crazy idea and roared with laughter but agreed it would do no harm.
The manager instantly agreed John should continue to work there after his father retired. He felt John had most of the knowledge and skills to do his father’s job but would need help with paperwork. He was a popular worker and the firm wanted to retain him. As John said to me: ‘If you don’t ask, you don’t get!’
A few years later, I met him at a bus stop. He was enjoying work – and being paid. He looked and sounded so different.
‘I grew up. I became an adult. Suddenly I had a proper job because I was me – not someone’s son. I felt completely different,’ he said.
He was proud to be paying tax and contributing to the household. He was delighted to be able to buy birthday presents for his friends and family.
To his surprise, his whole world changed. ‘It felt special for a bit, but now I know I am just ordinary – like everyone else at work.’
John thanked me for ‘that phone call that changed his life’ but added how angry he was that so many people had such low expectations of people like him.
Paradigm, a learning disability training and development agency, brought together people who run services to talk about what stood in the way of creating a good offer that supports people to live ordinary lives. Christina Schwabenland reports on what happened next
It is now a year since Paradigm issued its research on creating positive cultures.
These conclusions (see box) are the result of the 18-month project led by Paradigm where individuals from nine organisations discussed what prevented good services that helped people to live ordinary lives from being created. Three people from each body took part so, over the project’s 18-month life that started in 2015, 27 individuals participated.
One really great thing is that Paradigm has launched the GR8 Support Movement in response to our finding about the importance of valuing support workers. Support workers do not get paid a great deal but are at the heart of good services.
The project strengthens the role played by these staff through shared learning and mutual support, posting regular webinars, discussions and information updates. It is affordable (costing £25 for a personal assistant and from £400 + VAT for a team), and is accessed at www.paradigm-uk.org/gr8-support-movement.
Since the GR8 Support Movement was launched, all sorts of conversations have been held, including about cooking, medication and assisting people to have more friends and relationships. It already has 91 members and is growing.
We have also seen that organisations are operating in a climate of massive change and upheaval. Hardly any of the original 27 people are in the same job now; some have been made redundant, while others have been involved in major restructuring. Some organisations have grown and others have lost staff and services. This makes it very hard to sustain good work.
Conflicting demands
Organisations are accountable to lots of people, such as trustees, service users, social workers, commissioners and regulators, who often have differing requirements and priorities. While people normally support the idea of an ordinary life, ideas about how this could be achieved may vary. This is just one of many examples of how managers have to face competing and conflicting demands. They have to hold all that together and juggle them. That is not easy.
So along with the good things, we still have concerns. We have seen managers feeling pushed into pretending bad services are satisfactory. We have talked to some great commissioners and people from the Care Quality Commission who all agree about what services should look like – before they add: ‘But we have to be realistic….’
John O’Brien, a thinker and writer on learning disability, calls this an ‘integrity gap’ – a gap between what we know we ought to do and what we think we can do (2014). How do we manage it?
We think this calls for honesty – it is better to admit we are not doing as well as we would like than to pretend that everything is fine when it is not. That takes courage – which is why the need for courage was one of our original findings.
So the initial project is over but the discussions carry on, through the GR8 Support Movement and conversations Paradigm is organising with experts by experience, support workers, managers, commissioners and policy makers.
This is because change comes from everyone. It is not just funders or social workers or managers who have the power to create change – it is people using services, support workers, family and friends – everyone.
Funding is scarce and a lot of services have been cut, so it is easy to get discouraged. Yet the enthusiasm and creativity that is demonstrated every day via posts on the GR8 Support Movement’s Facebook site is proof that great things are still happening.
Organisations can take several steps to create a positive culture.
These include:
– Managing competing demands (such as empowering people to make decisions then insisting those decisions are approved through a hierarchy)
– Spending time on the matters that genuinely make a difference
– Ensuring that the values are integrated in everything we do, and to role model them at all times
– Valuing support workers and enabling them to do the best job they can
– Courage.
Source: Paradigm (2017)
——————————————————————————————-
Christina Schwabenland is a reader in public and voluntary sector management at the University of Bedfordshire, and researcher on the Creating Positive Cultures initiative.
People who lived in institutions often remain ‘shut away’ after death and buried in unmarked graves. They deserve remembrance, say Helen Atherton and David O’Driscoll
Remembering the asylum dead of Yorkshire
Gone but no longer forgotten:the memorial to Broadgate psychiatric hospital residents
A local history project about a long-stay institution found little was remembered or recorded about what happened to patients who had died there – so I decided to investigate, writes Helen Atherton.
Staff from the University of Leeds and Purple Patch Arts, a West Yorkshire arts organisation, were carrying out the oral history project to collect the personal stories of those who had lived and worked at Brandesburton Hospital in East Yorkshire.
The research team interviewed around 40 people, both former staff and patients. Many varied features of hospital life were revealed but the response to death was the least well recalled, with few interviewees remembering what had happened to patients once they had died.
Traditionally, funeral arrangements were the responsibility of family members. However, patients often had no known relatives, so the hospital administration had this duty.
Investigation revealed that patients of Brandesburton Hospital were usually buried in the village graveyard and this was confirmed by the death registers in the local archives. To begin with, graves were marked with wooden crosses but, more commonly, no headstone was in place.
Given that many patients in long-stay institutions were essentially ‘put away’ and forgotten, the irony of this situation – the lack of recognition continuing in death – was not lost on the team and spurred them on to putting this right.
With the support of the local vicar and parish council, moves are afoot to erect a headstone and information board in the churchyard in memory of all those who lived and died in the hospital. A crowdfunding appeal has raised more than £1,000.
The Brandesburton Hospital memorial is not the only example of people coming together to address such past injustices.
In the East Yorkshire market town of Beverley, a commemorative stone was recently unveiled to mark the graves of some 935 patients from Broadgate psychiatric hospital who had been buried in pauper graves in the town’s cemetery.
The event was publicised but only a handful of people attended. This illustrates the problem of raising public awareness of the importance of such memorials in ensuring those who were often forgotten in life are not also forgotten in death.
Dr Helen Atherton is a learning disability nurse and a lecturer in nursing at the School of Healthcare at University of Leeds
Why the little-known history of institutional deaths matters now
Leavesden hospital in Abbots Langley near Watford in Hertfordshire was part of the first group of hospitals for people with learning disability in this country, opening in the 1870s,writes David O’Driscoll.
This hospital, built for the population of north London, had extensive grounds with an extraordinary range of facilities including a chapel, laundry, gas works, water supply, farm, bakery, paint workshops and a Turkish bath.
It always struggled with overcrowding – designed for 1,500 people, it had filled to 2,000 in a few years. This level remained more or less the same for the next 100 years.
One unusual thing about Leavesden was that it had a couple of graveyards. The other two major hospitals in Hertfordshire Ð Harperbury and Cell Barnes – did not.
This is significant because little is known about the deaths of the tens of thousands of people with learning disabilities who were admitted to these places. Only recently has there been any curiosity.
How long did they live there before death? How did they die? At what age? How did the institutions dispose of their dead? Was there a ritual? Were staff and hospital patients invited? How were families told?
All these questions have come to the fore with the recent Learning Disability Mortality Review report. This found life expectancy for people with learning disabilities, far from improving, is getting worse in some instances, such as for women. This is why it is essential we need to research these places, to understand the context of this disturbing statistic.
I have been exploring the mostly unmarked graves at Leavesden with Dr Stuart Todd of the University of South Wales; we have discovered some depressing, shocking things. Between 1918 and 1940, 2,308 people were buried there – an average of eight per plot. They were often buried in paupers’ graves, their lives simply forgotten.
We hope to publish more soon and hope to see other researchers look into this critical hidden history.
David O’Driscoll is a psychotherapist with Hertfordshire Partnership Foundation Trust
These articles are part of a series on memorialisation.
Our last issue covered the Calderstones cemetery campaign; the next will discuss institutional deaths.
NICE has issued guidance on the care and support of older people with learning disabilities, which could be be used to push for better services. Margaret Lally discusses its recommendations
A guideline to help services address the needs of people with learning disabilities as they grow older was published by the National Institute for Health & Care Excellence earlier this year (NICE, 2018a).
While Care and Support of People Growing Older with Learning Disabilities is aimed primarily at health and social care commissioners, there is an easy-read version of it.
NICE guidelines contain evidence-based recommendations and, while these are not usually mandatory, organisations are expected to follow them.
The guidance discussed here was developed to assist services that do not know how to respond to the needs of people with learning disabilities as they grow older.
The guideline working group was made up mainly of people from health and social care, but there were also three experts by experience and two carers.
It considered a lot of evidence (see NICE, 2018b) before making its recommendations. However, there were numerous gaps in the evidence and the working group has recommended more research is done.
The experts by experience were supported to make a full contribution to writing the recommendations, drawing on their own experience of what worked (and did not) for them. This included having a day together, before each meeting, to work through the papers; this was facilitated by Paradigm, a learning disability training and development agency.
Based on rights
The underlying principle of the guideline is that people growing older with a learning disability have a right to the same access to care as everyone else and that care should be person centred and tailored to their needs.
The starting point is that providers must implement existing legislation and guidance, particularly NHS England’s Accessible Information Standard (2017) and the Equality Act 2010.
Providers must make reasonable adjustments for people with learning disabilities and ensure that they are communicated with in a format that meets their needs, such as easy read, videos, tapes or the use of dolls.
They should also talk to the person’s family and carers, if appropriate and with the person’s consent, to make sure they have a good understanding of the individual. If the person does not have a carer, it is recommended that they are supported to find an advocate.
Assume capacity
Practitioners working in acute medicine may not be sufficiently familiar with the Mental Capacity Act 2005 (MCA) and assume that a person with a learning disability automatically lacks capacity. This can result in treatment been given without consent or, conversely, treatment being withheld.
Both situations can be extremely distressing for the individual and may also mean they do not get the right treatment.
The NICE guideline states that practitioners must understand the MCA; it should be assumed that a person with learning disability has the capacity to make decisions about their own treatment and they should be supported in making those decisions, unless an assessment demonstrates otherwise.
General health
Overall, people with learning disabilities have poorer health than the general population.
They have a greater risk of mortality due to conditions associated with their learning disability – for example epilepsy and aspiration pneumonia. Some will have poor general health because they take insufficient exercise and have an inappropriate diet, which makes it harder for them to combat illness.
As people with learning disabilities start to grow older, they will develop conditions associated with ageing but probably sooner than most people. There is a higher prevalence of dementia in people who have Down’s syndrome and this is likely to occur at a much earlier age.
Services often do not accurately diagnose and respond to symptoms that people with a learning disability present with. Many people with learning disabilities, particularly those with limited speech, find it difficult to communicate what they are feeling and, if a doctor does not know the individual, they may find it hard to identify what is going on for them.
For instance, the symptoms of a condition such as dementia may be confused with those associated with the underlying learning disability. What is seen as challenging behaviour may be due to the individual being in pain or just finding it more difficult to hear what is being said. This is sometimes known as ‘diagnostic overshadowing’ and can led to unnecessary suffering and even death.
Improving healthcare access
The NICE guideline therefore makes specific recommendations to improve access to healthcare and facilitate healthy ageing.
People with learning disabilities should be supported to have their annual GP health check, as well as the other checks available to the general population.
The annual check – which should include asking whether the person has had sight, hearing and dental tests – can help promote a healthy lifestyle and identify underlying conditions. It should include giving information about other services and be followed up by an action plan that both responds to any conditions identified and supports the person to age well. Commissioners should identify and address any gap in services eg optometry.
Again, good communication is essential. Particularly where a doctor does not know a person with a learning disability well, the individual must be able to bring someone with them who knows them very well, and can help them to both explain how they are feeling and understand what interventions are being offered.
Practical support could also include:
Providing longer appointment slots, explaining clearly what will happen beforehand and continue to explain throughout the appointment
If a medical examination is involved, particularly an invasive one, explaining clearly beforehand what is involved and letting the person see the instruments or machines (eg for mammograms)
Providing written information for both the person with the learning disability and their carer.
Other recommendations to improve access to health include providers using a ‘hospital’ or ‘health passport’, which provides key information about a person including how they like to be communicated with, their current health status and who needs to be consulted about their care.
The employment of a learning disability liaison nurse who works with hospital staff, the person and their supporters to facilitate communication is also recommended.
Fulfilling lives
The guideline emphasises that, like everyone else, people with learning disabilities have the right to live fulfilling lives and achieve their aspirations.
It makes recommendations intended to ensure strengths-based and person-centred care planning. Care plans should identify what activities are important to individuals and how they will be supported to do them.
Emphasis should be placed on maintaining and nurturing relationships – whether they are with family and friends or more intimate ones with partners. Research highlights that strong social networks and relationships may be a factor in facilitating good health (particularly mental health) and resilience (Age UK, 2010). Evidence suggests that people with learning disabilities are often quite isolated, particularly as they get older when they are no longer able to take part in initiatives that are learning disability specific; they may also be excluded from provision for older people because of their learning disability.
The guideline recognises the importance of age-relevant facilities being available to people with learning disabilities. It recommends that local authorities develop and promote a wide range of accessible community services, including education, and physical and social activities, which reflect local people’s preferences and abilities.
Planning for the future
An important part of any care plan is future planning. Two-thirds of adults with learning disabilities live with their families – often until well into old age.
Consequently, many older people with learning disabilities are not known to health or social services and do not become known until there is a crisis in the family – often the illness or death of their parents.
The guideline recommends that planning for the future takes place as early as possible and suggests matters that should be considered, including financial arrangements. There should be a sensitive but realistic discussion about what will happen when the family can no longer provide care and, indeed, when the person with a learning disability wants to live elsewhere.
An early discussion of possible options makes it easier for everyone. However, this will only work if there are realistic options to offer. The guideline recommends that local authorities do more to promote positive housing solutions (as well as residential and nursing care) to meet changing needs, including shared living schemes, or adapting the family home to make it suitable for the person to continue living there.
It is also essential that the emotional and practical needs of carers are looked after through, for instance, easily accessible information and respite care.
NICE also makes recommendations on how best to care for a person with learning disability who is dying. These include providing timely, person-centred advice to the person and their carers about all potential care options, including hospice services, and making it possible for the person to die where they wish.
The final recommendations focus on ensuring practitioners have the skills and expertise needed to work with people with learning disabilities as they grow older. This means that, as well as understanding learning disability, practitioners should be aware of conditions associated with ageing.
Over the next year, NICE will promote the guideline, including developing quality standards and quick guides (which deal with specific topics). People with learning disabilities, their carers and advocates should use the guideline to push for better services.
Margaret Lally was the chair of the Care & Support of People with Learning Disabilities as they Grow Older guideline committee, and has a background in health and social care
National Institute of Health and Care Excellence (2018a) Care and Support of People Growing Older with Learning Disabilities. www.nice.org.uk/guidance/ng96
National Institute of Health and Care Excellence (2018b) Care and Support of People Growing Older with Learning Disabilities. Evidence. www.nice.org.uk/guidance/ng96/evidence
NHS England (2017) Accessible Information Standard. www.england.nhs.uk/ourwork/accessibleinfo/
Age UK (2010) Loneliness and Isolation Evidence Review. www.ageuk.org.uk/documents/en-gb/for-professionals/evidence_review_loneliness_and_isolation.pdf
It’s not about being angry – it’s how you use this, says Simon Cramp, reflecting on his work to improve the lives of people with learning disabilities. Seán Kelly meets him
‘I hope it’s a book that is not just about how good I am – I hope it is also about changing government policy by making small victories with a lot of help from other people,’ says Simon Cramp, a self-advocate and campaigner with learning disabilities.
While the title of Cramp’s book, Don’t Cramp My Style, is an amusing pun, given his life and his passion to create positive change, it is difficult to imagine anyone managing to cramp his style in any way.
The book tells Cramp’s life story, setting it against the backdrop of policy developments and scandals in the UK that affect people with learning disabilities. Cramp wrote it because he had been disappointed on reading Alastair Campbell’s diaries covering his time in the Blair’s Labour government. ‘It was all about him,’ he says, and did not cover wider developments sufficiently.
The story starts with his birth in 1971 as one of a pair of twin boys. Neither brother started breathing soon enough after the birth which led to them both having learning disabilities and various health problems. Simon’s brother
Adrian’s learning disabilities were ‘a bit more severe’.
Because of this, Cramp has dedicated much of his life to improving matters for people with profound learning disabilities. Adrian sadly passed away about three years ago but his older brother (by eight minutes) has continued as a committed campaigner.
As he grew older, Cramp became involved with the local Mencap group. He first came to the attention of National Mencap at the organisation’s conference in 1998 aged 27 when he made an impassioned speech in favour of people with learning disabilities having voting rights within the organisation.
He cannot remember his exact words: “Forgive me Sean – it’s nearly 20 odd years ago – but it was something like: ‘If you don’t give us the chance that we can do this, how will we ever know whether we can?’ ”
He spoke from the heart with passion and clarity and the effect on the conference was electrifying. When the vote was taken, the huge majority needed for the rule change was achieved. There was uproar, Cramp says.
A photo of him, eyes closed and punching the air, surrounded by supporters, went across the world.
‘I did a You and Yours radio interview, I did the Guardian, I did most of the national newspapers and my picture appeared even in Australia and places everywhere around the world. It went global. You know – “charity gives a voice for people with a learning disability”.’
Not surprisingly, he soon found himself voted onto the national assembly and then the board of trustees. For a self-advocate, he describes this as being like a footballer who suddenly finds himself in the premier league.
‘It’s quite a big leap. Once you get into those positions it’s not about ‘What are your problems?’ You are there to do a job for other people because they have elected you and it’s a completely different ball game,’ he says.
The position at Mencap led on to Cramp becoming a member of the Royal Society of Medicine Intellectual Disability Forum. He says his biggest honour there was being asked to chair a symposium for the society at the House of Lords.
Other red letter days that feature in the book include going in top hat and tails with Lord Rix of Mencap to St Paul’s Cathedral to celebrate the Queen Mother’s 100th birthday, and being called to 10 Downing Street to meet Prime Minister Tony Blair.The book includes numerous positive tributes and testimonials from people he has worked with.
‘Perhaps I am blowing my own trumpet for some of it,’ he says. However, he adds: ‘You can’t do campaigning all on your own. If you are a lone voice, then people at the Department of Health & Social Care and other government departments don’t listen to you.’
He is keen on sophisticated campaigning methods: ‘The days of chaining yourself to a government building are long gone. You have to be a bit smarter.’
He is delighted to have been described as a ‘world class networker’ by Alicia Wood, the former chief executive of Learning Disability England (when it was Housing and Support Alliance), and others.
One absence in the book is the voice of other self-advocates. Cramp explains: ‘Unfortunately, I didn’t quite get to speak to any self-advocates because they were in different parts of the country and I have lost touch with some of them. That was one of my downsides.’
He points out, however, that they are mentioned in a contribution to the book written by Don Derrett, a pioneer of self-directed support, who worked with him at Mencap.
Elsewhere in the book, David Wolverson, the former chief executive of Dimensions, writes: ‘When you take even one step in Simon’s shoes, I wondered how he had not become an angry young man.’ To this, Cramp responds: ‘I became an angry man! But it’s about how you use it.’
He tells of being at a meeting years ago at the Home Office. ‘I was getting quite angry and quite bolshy, and at times bordering on being rude because I was still learning my trade,’ he recalls. He quickly caught on that he would not be invited again and so he learned to be more professional in his criticisms.
Making the law
Cramp is particularly proud of having been involved in the development of the Mental Capacity Act 2005. With others, he successfully campaigned for the inclusion of advocacy including the requirement for independent mental capacity advocates. Mental capacity continues to be a concern for him.
‘That’s one of my babies. That is one of the things that I am so passionate about. I will fight you to the end in debates and try to make you see my point of view [over mental capacity]. I don’t care who you are – whether you are a doctor or whatever,’ he says.
He finds it amusing that the act was nearly invoked in his own case. He was in hospital for a CT scan and the doctor was going through the checklist before the procedure. He was having one of those days where his dyspraxia made it hard to process information and he had trouble understanding one of the words.
When the physician began to question his mental capacity, Cramp derived some satisfaction from saying: ‘I beg your pardon. I was one of the people that made sure that act actually happened.’
A hero and inspiration is ‘bless him, Brian Rix’. The late Lord Rix – an actor in saucy stage farces that were popular in the 1950s and 1960s – is well known as a founder and chair of Mencap.
Rix was a classic ‘luvvie’. Whenever Cramp met him, Lord Rix used to say ‘Hello, love, are you alright?’ and, if Cramp needed help with something, he would always say: ‘Yeah, love, leave it with me.’
Rix’s willingness to drop what he was doing to help Cramp probably caused ‘a few narked faces on Mencap senior management’.
‘I just loved him to pieces – as a bit of a father,’ he says.
In turn, Cramp helped Rix manage a difficult situation in the House of Lords, by suggesting that some tricky and confusing amendments to a bill were withdrawn and rewritten. Rix took his advice and Cramp is proud that he was able to help him in return.
He is also proud that Rix’s son Jonty has written one of the forewords to the book. Another of the forewords is written by Guardian correspondent David Brindle.
Cramp is amused by Brindle’s approach: ‘I think David puts it nicely when he says this is quite a disorganised book but, if you want a scholar’s thing, an academic book, then don’t buy this book. I think it’s perfect, you know.’
In truth, it is an unusual and very personal book – and it strongly reflects the character of its author and central figure.
Towards the end of the book, he half- jokingly suggests that, maybe, one day he will become ‘Lord Cramp of Chesterfield’. This comment says a lot about him, displaying his sense of humour and his undeniable ego, as well as his dedication to public service. It is almost impossible not to chuckle at his cheek but, on the other hand, a seat in the House of Lords might suit him very well indeed.
Don’t Cramp My Style: a Campaigning Life can be downloaded as a pdf or purchased as a hard copy from the Centre for Welfare Reform website: www.centre forwelfarereform.org/library/by-az/dont-cramp-my-style.html
Sean Kelly was chief executive of the Elfrida Society from 2001 to 2012 and is now a freelance writer and photographer
Being a parent poses specific problems for those with learning disabilities, says Ali F Jabeen. The Elfrida Society’s specialist advocacy service is enabling confident, successful parenting
Every significant right of passage in the life of one human being requires adjustments. One of these is becoming a parent.
It is said that ‘it takes a village to bring up a child’. What village does the parent with learning disabilities live in? What support and learning does the village have in place to support the new parent?
As Iva Strnadová wrote in Community Living (2017) ‘no one is born knowing how to parent’. We all need to learn. The adult who happens to have a learning disability is no different.
To create and maintain a fair, equal society, work begins here. What we learn, we teach our children through our actions and reactions. If adults with learning disabilities have had a life of alienation, segregation and negative judgment, and have internalised these attitudes and adopted behaviour that supports them, our work is to undo this learned behaviour.
We must ensure people can learn they do not need to feel this way, be themselves and share their learning as parents.
Through peer support, parents with learning disabilities can become confident for their children and ask for the support and guidance they need.
Unfortunately, many parents with learning disabilities are afraid of asking for support or advice from professionals such as their children’s social worker, teacher or doctor. They fear they will be judged to have failed to parent their child, and that the child will be taken away.
This becomes a self-fulfilling prophecy as, in most cases, parents do not receive the support they need to prove they can become good enough parents.
My role as an advocate in the specialist service involves working with parents so they can face their fears and get support to communicate on an equal footing with social workers – and helping one to understand the other.
Our peer support group helps parents recognise the changes that need to be made, become more aware of their rights, and learn the perspective of the social worker, becoming more aware of their need for a social work support system designed for families where at least one parent has a learning disability.
The Elfrida Society’s specialist advocacy service for parents has attracted attention from all over the UK. Referrals from all areas have given the society a unique perspective on best practice in this complex area.
A common awareness and consistent approach across the UK needs to be established, covering all from family support workers to barristers. As a first step, our parents have created a Parenting Toolkit to support professionals in their work.
Our goal is a brighter and fairer future, creating positive outcomes for parents and children and removing obstacles to successful parenting. In the long run, it will be less cost to the public purse.
Strnadová I (2017) Parenting as a human right: is there justice for people with learning disabilities? Community Living 31:2, 9
Ali F Jabeen is operations manager for the Elfrida Society Parents Project, which provides a specialist advocacy service. www.elfrida.com/parents
This is the first of two articles. In the next issue, Ali F Jabeen will discuss the good practice the specialist advocacy service is developing, and challenges to achieving this
Lack of influence and participation by self-advocates in organisations acting on their behalf
Advocacy organisations and other bodies that speak on behalf of people with learning difficulties or autistic spectrum conditions tend be led and controlled by non-disabled people rather than by self-advocates, Gabor Petri’s doctoral research findings suggest
Background
The disabled people’s movement has successfully influenced laws and policies across the world over the past three decades. Today, improved accessibility, progress in deinstitutionalisation and community living, anti-discrimination laws and other policies mark the impact of the continuous advocacy by disabled people’s organisations (DPOs).
DPOs are seen as representative voices and are usually led and controlled by people with disabilities. However, there are exceptions – those speaking on behalf of people with autistic spectrum conditions (ASC) and with learning difficulties are usually controlled by parents or professionals.
To date, very few studies have explored what hinders self-advocates’ better involvement in their ‘own’ organisations.
This research aims to find factors that help and hinder self-advocates in the disability movement, including in their own organisations.
It will be completed in December 2018. The early findings are presented here.
Key messages
Disabled people’s organisations are led and controlled by disabled advocates.However, most of those speaking for people with learning difficulties or autism are still led by non-disabled people.
Self-advocates, parents and professional advocates feel that self-advocates are often not involved in making decisions about how organisations are run.
Participation by self-advocates in organisations speaking for them is often tokenistic.
Self-advocacy and support give people the chance to gain control over their lives.
Key findings
To assess the participation of self-advocates within DPOs and in the disability movement, Arnstein’s ladder of participation was used (Arnstein, 1969).
Subjects – paid, professional advocates, parents and self-advocates – were asked to place self-advocates on the ladder to show how they saw their participation in the democratic decision-making processes of DPOs, charities or the broader disability movement. A simplified ladder was used for people with learning difficulties. Altogether, 44 people (n=24 in Hungary; n=20 in the UK) took part.
Results were consistent between the UK and Hungary: self-advocates in both countries felt their involvement in the broader advocacy movement of disabled people and in formal organisations was often tokenistic, and they had few opportunities to influence DPOs’ decisions.
The views of professional paid advocates and parents were similar; they also thought DPOs were not ensuring the full participation of people with learning difficulties or ASC in them. Even when people are consulted about issues, their responses are not necessarily considered.
Several self-advocates said they thought most people with learning difficulties or ASCs had ‘no power’ and lacked any opportunity to influence how organisations speaking on their behalf worked. Parents and professional advocates agreed.
One autistic self-advocate in Hungary said basic human rights principles were not respected at all within most DPOs:
‘There is the saying ‘nothing about us without us’, which I think is in the Convention [on the Rights of Persons with Disabilities] itself, and this means they [DPOs] have to involve us, so that we are there in the decisions taken about us. But this is not happening at all.’
A British professional advocate, like other participants, emphasised the importance of support for people who wished to speak up:
‘We tend to be listening but we actually don’t give enough options for them and the support to be truly the way it should.’
A Hungarian advocate (who is both a family member of a person with learning difficulties and a professional advocate) highlighted that people with learning difficulties, despite shortcomings, were still more included in DPOs than in broader society:
‘In Hungary, people with a learning disability are generally only subject to therapy or are being informed at best. Within advocacy organisations, they are on the level of consultation or placation.’
A professional UK advocate related this to the broader issue of citizen involvement in public policy and gave the example of DPOs being consulted by public bodies:
‘Public bodies often assume this is ‘we asked you’ or ‘we have given the opportunity to say what you think’, so this is the kind of operational norm. But it’s tokenistic. So people with a learning disability […..] come into four categories between therapy and placation and at the far end you still have this manipulation, particularly with challenging behaviour, situations, secure settings …. I don’t see citizen control at all; I don’t even see what you could legitimately call delegated power. There is partnership, we experience it, but it’s flawed and it risks slippage into tokenism.’
However, some experienced self-advocates were more positive. Many felt they had nearly full control of their lives, as two veteran British self-advocates said.
‘Now? Definitely now in the top! When I was in the [care] home, back then, more down here, halfway through, therapy and manipulation. I felt I weren’t in control. And I was pushing them limits to get my control. Because I knew what I wanted and I knew what I wanted to do but it’s like how do I say it unless I’m doing something wrong?’ (Self-advocate 1)
‘I was down there in the past – no power – but now up to partnership and control. Jumped from manipulation and now I am in the green.’ (Self-advocate 2)
These views show that, even when involvement in DROs is limited, self-advocacy can be meaningful to individuals and, with support and opportunities, people with learning difficulties can feel empowered and in control of their lives.
A doctoral study of self-advocacy and the disabled people’s movement, Tizard Centre, University of Kent (working title, forthcoming in 2019)
Aims To explore the position of self-advocates within the disability movement today, including their involvement in disabled people’s organisations.
Methods This qualitative study in the UK and in Hungary involved 44 participants with learning disabilities or autistic spectrum disorders. Focus groups and interviews explored the views of self-advocates, parent advocates and other family members involved in advocacy, as well as professional advocates. For the analysis, thematic analysis was used to identify emerging themes. The study was approved by the Tizard Centre ethics committee.
Read the report There is a discussion of the emerging research findings in Petri G, Beadle-Brown J, Bradshaw J (2017) “More honoured in the breach than in the observance” – self-advocacy and human rights. Laws 6(4): 26. www.mdpi.com/2075-471X/6/4/26 (open access)
Conclusion
Although self-advocacy can powerfully shape the lives of people with disabilities, the involvement of self-advocates in formal DPOs remains wanting.
Self and other advocates such as family members and professionals think more needs to be done to ensure ‘representative’ organisations are controlled or led by people they are representing.
Arnstein SR (1969) A ladder of citizen participation. Journal of the American Institute of Planners 35(4): 216-224
Gabor Petri is a PhD candidate at the Tizard Centre, University of Kent
On leaving school, many young people with learning disabilities end on a path to a lifetime of services that fail to meet their needs and wishes fully. Simon Duffy describes how a new path can be forged
Transition is code for system failure. At the end of school, while their peers party, play and plan for the future, young people with disabilities are sucked into a dangerous vacuum.
The result is often family breakdown and expensive institutional care – with young people moving into residential care, colleges, assessment and treatment units or private hospitals.
I gained a sense of how this happens when I became a governor at a local special school. Teachers did not support children to take on a life of citizenship, because they did not anticipate young people making progress in their adult life.
Adult services responded by despatching an array of planners into the school system.
Meanwhile, families were never told what they were entitled to, nor how they could organise any support they needed.
A new way of transition
After a year of interviews with families, professionals and teachers, the school designed a new transition system, and managed to get the system to change some of its behaviour.
Families were told what their budget would be early on – at least by the start of the final year. Budgets could include funding from the NHS, social services or adult education. Young people had lesson time to work on their own plans, and families did not have to develop multiple plans for different professionals. The authority of the family was respected and support for families was organised with the school acting as a base for family learning.
Families no longer had to seek the most expensive support solution – often a residential college, hundreds of miles away – as a kind of rational negotiation strategy. Instead, empowered with a meaningful budget, families could develop realistic plans and organise sensible local support solutions which invested in both their child and their local community.
Another positive outcome was that the school began to change – not because people were told to, but because teachers began to see their work now had real meaning. The emphasis on employment increased and the curriculum was organised around the Keys to Citizenship (Duffy, 2006).
Much of the success of this work was based on the inspirational work of Pippa Murray, a fellow of the Centre for Welfare Reform (2010). Instead of lecturing parents about what they should do, Murray helped parents discuss their problems and identify solutions together.
Tackling stereotypes
Peer support is critical for establishing faith in the possibility of positive change. Parents learn from each other and see the benefits of taking risks and trying new things.
This same thinking is found in the Now and Next programme, based in Australia (Mahmic and Janson, 2018). This system of peer support starts at birth. It helps families confront the negative stereotypes of disability fostered by the medical system. Instead, families help each other to develop meaningful positive plans and forge positive relationships with professionals.
Care and conflict
A root cause of the transition crisis is the failure to respect the moral authority of families. Professionals can create a vicious cycle: parents are seen as too controlling, the professional proposes what they think is an empowering solution, the parent becomes defensive, nothing is achieved and the professional moves on.
Unless we start by respecting families, we are building on sand. The plans of enlightened professionals will come to nothing if they conflict with the power of love.
The basis of transition – growing and changing – belongs to the person and their family. It is not a system issue and, once we steal authority over their own lives from people, we create a problem with no solution.
Simon Duffy is director of the Centre for Welfare Reform and secretary to the international cooperative the Citizen Network
Duffy S (2006) Keys to Citizenship: a Guide to Getting Good Support for People With Learning Disabilities. 2nd revised edn. Sheffield: Centre for Welfare Reform
Murray P (2010) A Fair Start. Sheffield: Centre for Welfare Reform
Mahmic S, Janson A (2018) Now and Next: an Innovative Leadership Pipeline for Families with Young People With Disability or Delay. Sheffield: Centre for Welfare Reform.
Further reading
Cowen A (2010) Personalised Transition – Innovations in Health, Education and Support. Sheffield: Centre for Welfare Reform
When London’s Horniman Museum created a gallery exploring what it means to be human, people with learning disabilities were involved. Josephine Healey reports
High on the hill set in 16 acres of beautiful gardens in south-east London sits a true jewel – the Horniman Museum.
Founded by Frederick John Horniman with items gathered from his extensive travels, the museum reflects a cross-section of the world. There are collections of natural history, anthropology and musical instruments, as well as an aquarium and butterfly house.
From its inception, Horniman desired that the museum would serve to educate, engage and inspire local people in Forest Hill. This mission remains as strong today, driven by the museum’s community learning team.
Engagement is at the heart of many public, cultural and educational venues. However, there can be a shortfall between the ambition and the reality, with lip service paid to the notion of engagement but a discernible gap in terms of achieving genuine inclusion. How do you make sure you engage all sections of your community, including people who are hard to reach or often excluded Ð those who often have little or no voice?
If you do manage to involve these individuals, how do you make sure that you are engaging with them in a meaningful way? True engagement is collaboration and inclusion. It is having ideas and opinions listened to and respected. It is giving people control and choice over shaping the way things are done.
Crucially, alongside the consultative process, it is giving people the opportunity for active involvement and the chance to experience tangible outcomes from what they put in.
The Horniman’s Discovery Box project – part of the World Gallery – is a fantastic example of true engagement born through a person-centred approach to involvement and partnership work with local people.
A Heritage Lottery Fund grant enabled the museum to involve people with learning disabilities in the project’s development. This saw community groups work with the museum to design boxes of items based on a theme of their choosing. The boxes are to be displayed in the Horniman’s Hands on Base Gallery – a space where visitors can handle items from the museum’s collection.
The boxes can act as self-guided journeys of discovery for the diverse range of visitors and also taken outside, bringing the museum to the community. As well as being a tool to educate and inspire, they will have a lasting legacy, projecting the personalities and voices of the people who put them together out into wider society.
As a social inclusion manager with Three Cs, I was excited to work with the Horniman to design inclusive, person-centred sessions allowing our service users (including those with little or no verbal communication) to fully embrace this opportunity.
Central to successful engagement was careful planning. This gave structure to sessions while allowing them to be flexible enough to be led by participants, reflecting their interests and learning styles.
To be meaningful and of interest to the people we support, our sessions had to be interactive and fun Ð using tools such as digital cameras to allow people to select and record objects that interested them, and using games and activities to get to know participants so we could support them to truly project their voices.
It was also important to get ‘hands on’, discovering objects through our senses, investigating how they worked, choosing our favourites and spending time visiting the museum’s galleries. Could we find objects similar to the ones we had liked? Perhaps ones that made the same sound, were the same shape or came from the same animal family?
Invaluable to the process was the collaboration between Three Cs’ support staff, who know the participants and are skilled in supporting them to express their preferences, and Horniman staff and volunteers, with their expertise of the collection and object handling. This allowed people to actively explore items they chose.
Three Cs’ box – Wings, Whiskers and Wheels – is an eclectic mix that is genuinely representative of the people involved in the project, their choices and their voices.
Tony Manning’s and John Allison’s love of birds and Christine Ingram’s passion for aeroplanes, for instance, gave us the wings section, with objects selected from a wide range of winged items. Cheryl Lyte’s inner fashionista saw her drawn each time to a fetching pair of whiskered cat boots. Ruth Alliston, who is non-verbal, loved it when her mum Ð a Horniman volunteer – helped her interact with the masks; the route they took around the museum will be included in the activity section of the box for others to follow.
The Discovery Box project provided a meaningful brief with a real outcome. Being flexible and person centred allowed Three Cs and Horniman staff to engender true engagement and allowed people to express their personalities and passions. Knowing the group as I do, I would say that all that’s missing from our box is a nice cup of tea.
Josephine Healey is social inclusion and volunteers manager for Three Cs. www.threecs.co.uk
Mini museums are a global gain
The Horniman Museum and Gardens aspires to be the most culturally democratic museum in London, building on founder Frederick Horniman’s vision that people from all backgrounds feel this is a place for them, writes Julia Cort.
Our Discovery Boxes – mini museums in a box – are important in this. Each box is themed and full of things that can be touched, worn and investigated.
Visitors can explore them in our Open for All sessions on Sunday mornings or talk about them with volunteers in our World Gallery. We will be taking them out to groups who are unable to visit.
Thanks to the Heritage Lottery Fund, we could refresh the boxes that had been made in 2002. We asked groups supporting people who might not visit the Horniman of their own accord for their help.
Each group chose a theme for a box, decided which of our objects should go into it and wrote a guide on them. We worked with three organisations for people with learning disabilities – Redstart Arts, Lambeth Mencap and ThreeCs.
The project was a great success. As well as talking to visitors about the items in the boxes, we are talking to them about disability, neurodiversity, communication and other issues. Our partners with learning disabilities have taught the Horniman team new ways of responding to items, such as making up songs and finding special ways to protect them. We have also learnt a few Makaton signs.
The Discovery Box project is linked to the World Gallery, which opened on 29 June – 117 years to the day since the museum opened in 1901. This showcases our anthropology collection of over 3,000 objects telling stories from around the world that explore what it means to be human, and how ordinary people live and make their way in the world we all share.
We would like to thank the groups for helping us to appreciate the wonderful variety of ways to communicate and understand the worlds that exist within as well as between cultures.
Julia Cort is community engagement manager at the Horniman Museum and Gardens. www.horniman.ac.uk
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Jan Walmsley issues a powerful rallying call to rediscover the determined spirit that liberated people with learning disabilities from long-stay hospitals four decades ago
Things are not good for people with learning disabilities and their families.
Just read Norman Lamb’s motion to the House of Commons earlier this year (Hansard, 2018) which listed neglect, abuse, poor care and premature deaths, not to mention the failure of Transforming Care to release the thousands of people inappropriately detained in assessment and treatment units (ATUs), or the absence of support for families that might actually prevent the sorts of crises that lead to ATU admission.
‘I cannot think of any professionals now calling for a halt to neglect and unnecessary incarcerations in private hospitals’
What would it take to shift things? Winterbourne View did shake things up, but its impact has faded. Transforming Care is a bureaucratic triumph whose achievements appear to be minor, as the recent interview in this magazine with Ray James, the first national director for learning disability at NHS England, seems to suggest (Kelly, 2018). Brave families who have lost a child or been beaten up by the system have made some inroads. But not enough.
Only 11 MPs attended the debate initiated by Lamb in July- hardly evidence of a hot topic.
However, I did encourage myself by remembering that, bad as things are now, they were worse 50 years ago, when there were 50,000 people in long stay hospitals, including, amazingly, children as young as three. People did not believe it was possible, but they did close. Are there lessons for us today?
Leadership for change
It took powerful leadership to force the closure of the long-stay hospitals – I will come to that. But first, I invite you to think: where is the leadership for change now?
I can think of two politicians (two!) waving the flag – Norman Lamb and Baroness Sheila Hollins. There is NHS England, bogged down in bureaucracy and spin. There is Learning Disability England, the new kid on the block, representing self-advocates, families and some (far from all) provider organisations. It is a struggle to reconcile all those different interests, and they are finding their feet.
This brings me to Mencap, its image badly tarnished by Danny Tozer’s death in one of its care homes – and the way it approached the inquest (Inquest, 2018).
There are the amazing family members – Sara Ryan, Paula McGowan, Mark Neary, the Tozer family, Nico Reed’s relatives and so on – forgive me if I have left you off the list.
There is a stark contrast with the past. Looking back, I see several leadership nodes. National politicians were goaded into action by the Ely Hospital scandal in 1969, as with Winterbourne View in 2011.
In 1969, the embarrassment was enough to stimulate a white paper, published in 1971, committing the government to expanding community services such as hostels and day services (HMSO, 1971). There was money and there were deadlines. These were, of course, missed, but steady progress brought community services virtually everywhere by the late 1980s – earlier in most places.
After Winterbourne View, we had targets (all missed) and then Transforming Care which – let’s be honest – has failed, while other forms of social care have shrunk.
It was not just political leadership that brought pressure for change in the 1970s. Health think-tank the King’s Fund espoused integration for people with learning disabilities. Under its umbrella, academics, campaigners, professional leaders, families and self-advocates could meet and plan. It sponsored important publications such as An Ordinary Life (1980) which set out a vision for an inclusive society.
Professionals stepped up, in bodies such as the Campaign for Mental Handicap, later Values into Action, and the Association of Professions in Mental Handicap.
They were influenced by training – known as Pass and Passing – imported from the US. It was hard to find any professional in ‘mental handicap’ who had not experienced a Pass course in the late 1980s. This involved five days of having the ‘right’ values drummed into their heads – integration and community living, social role valorisation and normalisation. It was enough to marginalise any voices opposing deinstitutionalisation and to show them as being motivated by self-interest.
It is here that the contrast with now is most striking. I can think of no examples of professionals calling for change and a halt to huge cuts in services, neglect and unnecessary and expensive incarcerations in private hospitals.
I get no sense that there are organisations representing professionals standing alongside the families and self-advocates fighting for better lives, and no equivalent to Pass/Passing to unite professionals and other workers behind a set of values. I wonder why?
Campaigning
This brings me to family campaigning. Mencap was the voice of learning disability in the 1980s far more incontrovertibly than it is today. Despite tensions between the centre and local branches, it was able to claim the moral high ground.
In the Open University where I then worked, it was a valuable ally, able to muster resources, influence the Department of Health and senior politicians and raise money.
It was also in the 1980s that the seeds of its current problems were sown. The decision to become a service provider, and a failure to adequately respond to the challenges posed by self-advocacy were strategic weaknesses that continue to dog it today.
So, although individual, loosely allied family voices are powerful today, using social media to get messages out, they are not united and nor, as far as I can tell, are they sufficiently well connected with influencers.
Last but not least, I come to self-advocacy, which became rooted in England in the early 1980s and has flourished. It can claim not only local but also national influence, setting the stage for the consultation that preceded Valuing People in 2001.
It is sad to think that its apogee, the National Forum of People with Learning Disabilities, disappeared in 2017 with barely a whimper.
Lead locally to make things work
So much for the vibrant national scene in the 1980s. This created a climate in which people could unite behind a common vision of ‘an ordinary life’.
But, as always, national scandals and energy fade over time. There was no consistent leadership for the closure of the hospitals during Margaret Thatcher’s administrations. To make it happen took local leadership.
I had a chance to learn about this earlier this year when I was contacted by David King, now resident in New Zealand. In the 1980s, he was in charge of the health authority which was the first to close a large, long-stay ‘mental handicap hospital’ – Starcross aka the Royal Western Counties in Devon in 1986.
“Starcross was totally inappropriate for anyone. I used to visit Starcross and came away punch drunk and bemused”
I interviewed both King and the woman he appointed to make the changes on the ground, Christine Elliott, and asked what the lessons were that might help foster change today .
First: don’t rely on experts
‘Not one of the very able and experienced people involved in health and social services locally were pressing for the institutions to close Ð rather, they were urging they be made more hygienic.’
Neither King nor Elliott knew anything about learning disability. Yet to them, it was obvious that an ordinary life was the way to go. No ideology was required.
‘It astounds me how long it all took. Nobody would have benefited from staying at Starcross – nobody. It was totally inappropriate for anyone. I used to visit Starcross and came away punch drunk and bemused.’
Second: find your allies and change agents
There were false starts with psychiatrists and psychologists. In the end, King found Elliott who, like him, knew nothing about ‘mental handicap’.
‘She used to come to Starcross to minute the meetings and one day she said to me it has to close,’ he says.
In turn Elliott found people she could work with – enthusiasts and visionaries, who were not necessarily in formal leadership positions.
Third: don’t underestimate the task of implementation and don’t use a lack of funds as an excuse
Funds are always being wasted on the wrong purpose. It put me in mind of a current case where the local authority is paying thousands to keep a man in an ATU while also funding his home in London and a staff team waiting to work with him when he comes out.
Fourth: find out who will oppose you, and negotiate
In the 1980s, the trades unions were the first port of call, as jobs were threatened. By guaranteeing jobs for everyone in the new community services, there was little opposition in Devon. It had its downside – not everyone was suitable. Some opposition, like unreasonable protests about new homes, just has to be faced down.
Fifth: get families and the media on side
Are there lessons for today?
History does not repeat itself neatly. There are many differences between then and now.
The big message is that things can change for the better. It needs levers in all parts of the system – it does not necessarily need the secretary of state for health to throw his or her weight behind change.
Where we seem to be lacking in comparison with the 1980s is:
– A shared vision of a better life and a belief that it is achievable
– A loud, reasonably united and well connected ‘user’ movement
– Professionals committed to change
– Powerful local leadership.
Let’s start a debate. We have nothing to lose but continuing deterioration.
– What do you think? Send your responses to this article, and your ideas about how a movement for change can start again. Email editor simonj@jarr.demon.co.uk. We want to hear from you.
DHSS (1971) Better Services for the Mentally Handicapped. London: HMSO
Hansard (2018) Transforming Care Programme. House of Commons debate. http://tinyurl.com/ya7bbuw6
Inquest (2018) Inquest Concludes into Death of Danny Tozer in Mencap Supported Living. Press release. www.inquest.org.uk/danny-tozer-conclusion
Kelly S (2018) ‘Better lives and not in hospitals.’ Community Living 31(4):12-13
King’s Fund Centre (1980) An Ordinary Life: Comprehensive Locally-based Residential Services for Mentally Handicapped People, March 1980. London
A lot has changed during my lifetime for people with learning disabilities – let’s keep this up, says Sara Pickard, as she reflects on how her experiences and opportunities in her life so far have changed her.
When I started in school when I was three years old, I attended a small class. I was observed closely before I was able to transition to my local mainstream primary school when I was six years old.
That meant bigger classes and more was expected of me but I think I was able to adapt to these changes and was able to fit in. I enjoyed my time in primary school.
Moving on into comprehensive school was a bigger challenge. I attended from age 12 and I really enjoyed my time there because I was able to be with my friends, and had great opportunities to be involved in school choirs and performing, which gave me more confidence. I loved showing what I could achieve, and liked showing how determined I was to do my best.
I was really excited about going to college and meeting even more friends. I did a childcare course in my first year then moved on to an IT and business course.
Both of these courses were definitely hard work but I did have great support in college which helped me to gain more confidence. I managed to pass my college courses, including gaining my Duke of Edinburgh bronze award.
All these new qualifications made me feel that I could have pride in the work I was doing, and this made me feel that I was definitely doing something right.
Then it was time for me to see what sort of work opportunities were out there for me. After a few work placements, my first paid job was as a part-time receptionist in a special needs school. This was really eye-opening for me. I was in an environment supporting profoundly disabled young people, who I had not encountered before as I had attended mainstream schools and college. I was also undertaking many different jobs in a busy office every day.
After that, I was appointed as a project officer with Mencap Cymru, where I am still working after an incredible 11 years.
I have felt personally that I have changed a lot over that time – and one project in particular made me see change in a very different light.
I worked for three years on Hidden Now Heard, which was funded by the Heritage Lottery Fund. This involved me conducting oral history interviews with the older generation who have learning disabilities who had lived for the majority or, in some cases, the whole of their lives in institutions across Wales (pictured).
I was hearing personal and in a lot of cases very emotional accounts of what life was like in institutions, including from those who worked there and family members who had relations living in these places. It is a very hidden part of our history.
We also put together museum exhibitions across Wales to educate the public about what this history was like, and how the changes to these individuals’ lives, from the times of institutions to living in the community today, changed life radically for them.
I felt proud to work on this project and to enable more of the public to hear about the hidden lives of this part of history, from which we can all learn so much.
My life has been so different compared with the lives the people I interviewed for the project. I have been very fortunate to have had three opportunities to visit Southern Africa with my work, and saw how different life is like there for people with learning disabilities. It really opened my eyes to see that we are so lucky to have what we have, and it is so rewarding to give life-changing chances and changes to people in countries like Lesotho, which has close links with Wales.
In the past few years, I have also represented Europe with an organisation called Inclusion International as a self-advocate, spoken about health matters at the United Nations in New York, and been an elected community councillor.
I can see that we have come a long way from those times when so many people with learning disabilities spent their whole lives in institutions. Things have changed during my lifetime – let’s keep this up and make more change happen.
When young people move to adult services, they can be vulnerable to a sheltered lifestyle that remains that way for years, blighted by desires to make them ‘safe’ and ‘settled’. What about the right to make mistakes, take risks and adapt how you live as you change? asks Suzanne Gale
To err is human, to live fully is divine
When young people move to adult services, they can be vulnerable to a sheltered lifestyle that remains that way for years, blighted by desires to make them ‘safe’ and ‘settled’. What about the right to make mistakes, take risks and adapt how you live as you change? asks Suzanne Gale
Transition is ‘the process of changing from one state or condition to another’, according to the Oxford English Dictionary.
As an adult, my life has been a steady stream of transitions, whether in employment, housing or relationships. Life has rarely stood still and I’m sure many readers can identify with this.
So why do you often only get one go at transition when you are an adult with a learning disability?
The Special Educational Needs and Disability (SEND) guidance acknowledges that there are a number of transitions during childhood, which are generally linked to education. It then notes that we should have ‘high aspirations and expectations’ for children to successfully transition into adulthood. But then what?
There are, of course, excellent examples of people with learning disabilities living full, varied lives. We can celebrate many success stories – actors, fashion designers, artists and musicians, as well as people with a learning disability getting married and successfully being parents (who’d have thought?).
However, the fact that these stories are newsworthy shows just how rare they are.
Once someone is settled, moving on is rarely discussed. The old ‘If it ain’t broke, don’t fix it’ mentality kicks in
Change avoided
I have seen countless examples of people living in the same place and being supported by the same organisation from the time they go to school until they are long into adulthood. It can be comforting for family members when things stay the same, and decisions to avoid change can be made with the best intentions.
However, this does not allow for freedom of decision and therefore limits options for transition. When you only know one thing, one place, how can you make an informed decision about whether you want to stay there for the rest of your life?
Local authorities have strategies that identify a move towards needs-led supported living but, in reality, people almost always move to the most cost-effective placement. Those with ‘challenging behaviour’ often live with the only provider organisation that will agree to take them. Once someone is settled, there is rarely any discussion in reviews about moving on. The old ‘If it ain’t broke, don’t fix it’ mentality kicks in.
However, if those people did not have a learning disability, they would be allowed to jump into any number of disastrous relationships and make as many foolish decisions as they liked.
And don’t even get me started on employment opportunities – if a person with a learning disability shows an interest in working in a coffee shop when they’re 15, there are no prizes for guessing where they’ll be working when they are 45. What happened to career change?
Safe life
Obviously, the issues are the time, energy and money that it takes to support people to transition through their life at their own pace. We know how badly it can go wrong when people are not properly supported; it is therefore often the case that a limited, safe life is preferable to a life with so much risk attached.
We just do not target resources to support everyone properly to make the changes they want to make when they want to make them. I cannot even begin to calculate how I would arrange, cost and gain agreement for funding to support someone who, after a relationship breakdown, wanted to move house, get a new job and start going to evening classes to meet new people. Yet this is what I would actively encourage someone to do if they did not have eligible support needs.
We must be able to find a middle ground as well as ways to empower people, to respect decisions they make about where they want to live, where they want to work and who they want to spend time with. We must be clear about the risks and what will happen if it does not work out. And then we need to let them have a go.
Yes, we need to ensure people are not abused and exploited because of their learning disability; we also need to allow people, if they have the capacity, to get hurt. If we do everything we can to stop them getting hurt, there is a chance we may also stop them being happy.
Suzanne Gale is a consultant who works on projects across the UK that improve housing, employment and lifestyle options for marginalised people
Problems of attitude, approach and thinking that distort decision-making are often seen by advice charity CASCAIDr. In the second of two articles on troubling legal issues, Belinda Schwehr examines mindsets
This issue, I am looking at mindsets that could be worthy of legal scrutiny in test cases.
Lowered expectations
In contrast to what happened when personalisation policy was dreamed up, a new pattern is emerging. Expectations are now being managed downwards by frontline staff being allowed – or even instructed? – to be gloomy about the future with regard to funding.
This presents as the message – before a decision has been taken under the Care Act or a review has been finished – to the effect that there have ‘got to be cuts’.
I would be the first to say that the sector probably pushed the rhetoric too high in the first place in 2008 before the financial crash occurred. However, that sort of cluelessness should not be solved by going the other way and into legally risky territory.
In legal terms, this loose language could indicate predetermination or a restraint on assessment or care planning discretion. It could indicate a disregard of the principle that resources are relevant to how needs must be met but not to whether they should be.
The bottom line for a council is always a competent, coherent employee’s evidence on why so much of anything by way of care or support would be enough.
The law is that a council is allowed to be less generous in times of hardship than in times of plenty, as long as the offer is defensible in terms of the statutory duty, which is to meet needs. How far councils have to go in terms of support to improve someone’s lot so they are seen to be meeting needs is not defined.
We are looking for the right case to explore that question – the sort which will make a judge choke a bit, and think -‘Seriously…..?’
Pressure on unpaid carers
Family carers can experience pressure to keep on caring, even if they are desperate to stop.
This can happen when a family carer’s input is taken into account when assessing a service user’s ability to achieve, which is contrary to Care Act 2014 guidance.
A typical example is maintaining a habitable home environment (people’s mums just do that sort of stuff, don’t they, forever?). In this area, the guidance at para 6.15 is clear that informal input is irrelevant when assessments are made.
We think that the guidance means informal input is irrelevant to the question of the significance of the impact on the individual. However, in families where the network is fantastically supportive, it is very easy for a care manager to say that the inability to achieve is a given, but the impact of that would be oh so very small because the family are so great.
This also happens during care planning, through assuming that family input is willingly and appropriately delivered and avoiding having anything that could be called a proper conversation with a carer – let alone a carer’s assessment for their own needs because of the support load they have taken on.
Housing and care
The separation – or not – of care and accommodation is a particular problem for parents when young people move from education or college into specialist supported housing.
This is not because this type of housing is not needed but because nobody seems to be able to find or access it other than where the care provider has sole nomination rights to it.
There appears to be a clear trend of an increasing integration of care with accommodation. This makes the service a care home, so no housing benefit is paid.
However, the Care Quality Commission has no interest in that problem and will not engage. That is despite its predecessor, the National Care Standards Commission, prohibiting de facto (not just legal or structural) integration of care provision and acceptance into clients’ tenancies following the Alternative Futures case in 2004; the court said care homes could not be deregistered and turned into supported housing with tenancies if personal care and accommodation were tied together.
We assume everyone is just hoping that this problem will go away. However, if any person in supported living wants a direct payment so they can change care provider and is told that would be inappropriate, this trend will have to be scrutinised afresh.
‘Take it or argue with us’
One of the most common approaches we are seeing is an up-front indicative offer of low and flat rate levels of services. This inevitably conveys a ‘take it or argue with us’ message.
Common examples are found in respite care or transport. Offers are sometimes driven by resource allocation software that has been fatally messed about with by the authority’s officers inputting indefensibly low figures with regard to the actual cost of care services on offer to the council or to the direct payment clients.
Another typical example is standardised approaches to issues such as disability-related expenditure and policies on discretionary decisions, such as whether ever to allow close relatives to be paid from the direct payment.
In every case, these managerially driven approaches inevitably put the burden on the vulnerable client to assert themselves. This amounts to risk transfer, to our minds, instead of abiding by the law.
At some point, offers will be indefensibly low but still accepted, or will amount to an improper constraint on individuated care planning competency. If councils get away with it, the bar is lowered for all.
We understand that council officers want to treat citizens equitably. However, that should not mean identical packages for all people who fit loose client-based categories such as ‘elderly’ or ‘learning disabled’ or ‘in supported living’.
The Care Act requires councils to be aware that the same difficulty in achieving an outcome might well affect two individuals to different extents.
Under R [JF] v London Borough of Merton, 2017), an assessment absolutely requires that attention is paid to individuals’ desired outcomes – albeit not the delivery of them in all cases – for an assessment to be lawful and valid in the first place.
Delays in reaching final decisions
This trend in making shortcuts is inextricably linked to the question of delay in reaching a final decision: the lower the indicative offer and the better informed the person, the longer it takes to resolve a dispute, and the more exhausting it is for all.
A classic example we have seen is a man who has been supported to live in the community after many years of a narrow and overly sheltered institutional lifestyle.
His package was to be cut from five hours a day to three, and it has taken seven months to get the offer up to 4.25 hours before a decision has even been made. The council steadfastly refuses to be drawn at all on how the man’s needs have lessened – and clearly they have not.
Managerially driven approaches put the burden on the client to assert themselves. This amounts to risk transfer instead of abiding by the law.
We are not saying it is unlawful to reduce his package unless there has been a change in needs. The law is simple: any cut, whether driven by a change in the circumstances of the client or the council, just needs to be explained and rationally reflected by reasons, en route to the written care plan, as to what it is and preferably the reasons why it is being made.
In essence, it needs to be explained why what was needed before is not needed now or why something else will suffice (R v Birmingham City Council ex parte Killigrew, 1999).
‘Unavailable’ services
From our perspective, the most worrying example of where we are headed nationally is the attitude to actual failure to provide necessary services because they are not available – although this probably means they are merely unavailable at a given price.
Tightening belt: cuts to a care packages must be explained, whether they follow a change in the client’s or the council’s circumstances
In the sphere of autism services, where clients may have got stuck in an assessment and treatment unit (ATU) for years for want of adequate community provision that is prepared to cope compassionately and constructively with the challenge of volatile people, we foresee major trouble brewing in legal terms. Transforming Care seems to be good for stopping admissions but no use at all for supporting timely discharge.
Section 117 of the Mental Health Act obliges councils and the NHS to provide or fund aftercare services, sometimes including accommodation, for people discharged from compulsory detention under the act. Many ATU residents are fit for discharge, in terms of not needing to be detained any longer, but managers and tribunals will not order discharge unless or until there is a proper environment for appropriate ongoing treatment.
We know of case law that says that until discharge has been ordered, the person is not unlawfully detained. However, although there is a duty on section 117 teams to start care planning once it is clear a person might soon be fit for discharge, that duty is a duty of best endeavours only, not an absolute duty to provide a service in any given time.
That has always struck us as odd and unjustifiable in comparison to the nature of the ordinary duty under the Care Act, which goes like this: if there is only one way to meet needs, then the cost is irrelevant.
CASCAIDr considers that a duty to use best endeavours could be investigated with regard to just how far afield section 117 commissioners have actually looked, and with what approach to procurement and to cost guidelines. This could allow genuine legal scrutiny of the regretful assertion: ‘It doesn’t exist.’
A judge might then ask if it doesn’t exist, why doesn’t it exist Ð and what have those market managers been doing about that to stimulate the market?
Housing
In terms of housing, if there is no more housing into which this very needy client group can be nominated through homelessness points or cooperation over homes with the authority, why exactly are councils refusing to guarantee voids in privately financed schemes, thereby attracting private capital?
Councils have an ongoing responsibility for accommodation under the Care Act for meeting care needs within specified accommodation if housing need is not seen as part of the section 117 plan; they also have broader powers under the Localism Act to support all their functions, including section 117. NHS clinical commissioning groups have got express authority from Transforming Care and NHS Continuing Healthcare guidance to build housing costs into people’s health budgets.
We hope to take that line of questioning forwards when the right case comes along. Section 117 care planning is outside the scope of our free work Ð CASCAIDr would sink if it were not.
Belinda Schwehr is chief executive of legal advice charity CASCAIDr (www.CASCAIDr.org.uk) and owner of the Care & Health Law consultancy. She has been a barrister, solicitor advocate and university law lecturer
This article is the second in a two-part series looking at the most troubling issues in health and social care law and practice seen at CASCAIDr. Part one in the previous issue (CL 31:4) examined problems with due process
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Legal rulings over personal independence payments should mean more people could claim them or receive arrears. Charlie Callanan looks at decisions on mobility and safety
Two legal rulings on aspects of how personal independence payment (PIP) claims should be assessed are likely to be of benefit to some new and existing claimants.
The rulings may make it easier to get PIP, and some people will be entitled to arrears of their existing award.
Distress during travel
The first ruling was from the High Court in December 2017 about an upper tribunal decision regarding the mobility component.
Three upper tribunal judges made a decision in 2016 (known as MH) that found in favour of people with mental health problems regarding the mobility activity of ‘planning and following journeys’.
Following this ruling, the government changed the PIP regulations in March 2017 and effectively reversed what the tribunal had decided. The reversal meant that people who were unable to travel independently because they experienced psychological distress during journeys could not be entitled to the enhanced rate mobility component for the reason of psychological distress alone.
Government changes ‘were blatantly discriminatory against those with mental health impairments‘
However, the revised regulations were challenged in the High Court on the ground that they unlawfully discriminated against people with mental health problems. This is because people with physical health problems can get the enhanced rate under the alternative PIP mobility activity of ‘moving around’, due to their physical difficulties with walking outdoors.
The High Court upheld the upper tribunal decision, declaring that the changes to the regulations ‘were blatantly discriminatory against those with mental health impairments’.
Getting there: distress when travelling must be taken into account in assessing the PIP mobility activity of planning and following journeys
So the regulations were changed back to how they had originally been, and the government accepted that overwhelming psychological distress experienced by a claimant when travelling must be taken into account in assessing the PIP mobility activity of planning and following journeys.
Meaning of ‘safely’
The PIP regulations provide that, in the assessment, a particular descriptor applies only if the claimant can carry out the activity at that level ‘safely’. Some PIP activities include a descriptor that awards points if the activity can only be completed with assistance or supervision.
An upper tribunal case in 2017 (known as RJ) focused on the broad issue of assessing if a claimant can carry out a PIP activity ‘safely’. The tribunal concluded:
‘An assessment …. that an activity cannot be carried out safely does not require that the occurrence of harm is ‘more likely than not’. A tribunal [or decision maker] must consider whether there is a real possibility that cannot be ignored of harm occurring, having regard to the nature and gravity of the feared harm in the particular case. Both the likelihood of the harm occurring and the severity of the consequences are relevant. The same approach applies to the assessment of a need for supervision.’
The implication is that the greater the potential harm to the claimant or another person, the less likely it needs to be that it would happen on any specific occasion.
Implementation of decisions
The government has issued guidance on implementing the effects of both these rulings in July, along with plans for identifying existing claimants and failed applicants who may have missed out as a result of how their claim was assessed.
The Department for Work & Pensions will identify and write to all claimants who could be affected. Its guidance states that:
– The review will not involve face-to-face assessments, and no awards will be reduced
– Claimants will be notified of the outcome and will be advised of their rights to challenge it
– If a claimant requests a mandatory reconsideration of the review outcome, it will consider only how the judgments apply and not review other aspects of the award.
This should mean that claimants need not worry about a reduction in or loss of any component that is not a subject of the review. If a client is entitled to an increase, this will be backdated.
If claimants were refused a PIP award before the date of the relevant upper tribunal decision – 28 November 2016 in the case of MH (difficulty planning a journey due to distress) and 9 March 2017 in the case of RJ (the ability to travel safely) their case will not be looked at as part of the review process. If one or both decisions could apply to a client who has had a failed claim, they should consider making a new one.
In a climate of cuts to benefits and services, it is reassuring that courts and tribunals can still make legal decisions that may improve clients’ position. However, the implementation of these decisions may be fairly complex for the DWP to get right, so it is worthwhile for clients who may be affected to seek the advice of an expert benefits adviser.
Charlie Callanan is an adviser and writer on welfare rights
Resources
Personal Independence Payment (PIP). Implementation of Legal Judgments: Frequently Asked Questions. Comprehensive and clear information published by parliament. http://tinyurl.com/y8ww8yao
Advice for DWP decision makers
PIP – the Meaning of ‘Safely’ – Amended. http://tinyurl.com/y7dkrvre
Pip Mobility Activity 1 – Effect of UT Decision. http://tinyurl.com/y8uw9xfl
Belonging by Sheila Hollins, Valerie Sinason and Access All Areas artists, illustrated by Lucy Bergonzi. Beyond Words, pp56, £10/ebook £4.95
Reviewed by members of the Openstorytellers professional development skills group
This book explores the themes of isolation and friendship.
The story tells us that some people are stuck in their shell and don’t go out but, when they do, their life changes completely. They feel better in their mind, and we know that keeping your mind busy is good for you.
The story is made with pictures; they are clear and easy to understand. It tells the story of a woman who seems to be lonely. When she goes out, everyone is looking at their mobile phones and bumping into her. It seems like mobile phones are taking over the world.
She looks lonely and like she has no support worker, so maybe she feels frustrated. Some of us found it upsetting because it reminds us of when we are lonely, and of things from our pasts.
We thought that the man in the shop may have autism, and it seems that he experiences betrayal when he is teased. It’s as if his community betrays him.
It taught us that friends are important and having new friends makes you happy and want to socialise with them more.
Spending time with friends brings the best out in us, and that is clear in this book. In the book, the woman started off sad but ended up being happy because she has a friend and she’s not lonely any more. She faced a big challenge, so it was brave of her to go out. We have all had experiences like this ourselves, so we can relate to it.
The interesting thing that we found is that people can tell the story in different ways, depending on what they see in the pictures. This was a good challenge for us and got us to think about storytelling in a new way. It was really useful to read the text at the end of the book to help us understand the story even better. The authors help us to think about community and friendship. It is helpful to have a support worker to talk about the book with you and help you understand it.
We would tell other people to read it to help them understand how they feel in real life. One day, the reader might find themselves in the same situation. It would be great made into an audio version, to help people who are visually impaired. Keeping safe, making friends, supporting people in the community – we think the authors said it all.
Openstorytellers enriches and empowers the lives of people with learning disabilities through personal and classic stories: www.openstorytellers.org.uk
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