In November 2017 Disabled People Against Cuts and Disabled People’s Organisations involved in the Reclaiming Our Futures Alliance held a national Independent Living Campaign conference. The aim of the day was to take stock of the key barriers to independent living that Disabled people who use adult social care services face and assess how far the situation has deteriorated in the last year but also to explore a shared vision for an independent living support system that can truly uphold our rights.
Below you can find notes and films from the day as well as copies of hand-outs and presentations.
Papers disseminated at the conference:
• NHS Continuing Healthcare Cost-Caps – Where we are with Warehousing – Fleur Perry warehousing update
• Social Care is Broken Beyond Repair – So what should replace it? – Peter Beresford and Mark Harrison examine the problems and potential solutions Harrison and Beresford LB final
• The need to campaign against institutionalisation – Simone Aspis Simone blog
Today is a very, very sad and tragic day and I think some of us are starting to cry up the front here, because this has been a long campaign and it has been so important to so many people because it means so much, but this isn’t the end and I think what last Wednesday showed is that disabled people are strong when we unite with our allies, we fight back and we give them hell.
Save the ILF!
Whoa boy, Whoa.
I come in peace with my horse to save the ILF. We are fighting for independent living for disabled people in the UK in 2015. Can you believe that?
We have had enough. The Independent Living Fund closes tomorrow and we are not going away. We are going to fight on.
The ILF has given me freedom. It has given me indpendence, to live my life the way I choose without being reliant on friends or family. Without being stuck to a regimented regime of getting up in the morning when it suits other people, to go to bed at 9 o’clock, I was 22 and I had to go to bed at nine o’clock, can you imagine. I was told when I could go to the toilet, once a day at one o’clock, if I wasn’t there on time then tough, I’d have to wait until a later call that evening. It’s just not just me, it’s thousands of people out there who are subjected to this.
This is from Leanne. Hi all, I wish I could be with you all today but unfortunately, I can’t but please know that I am with you all in spirit, this is not the end, it is just the beginning.
There used to be a time when governments, particularly when the ILF came in when they were able to at least talk about independent living with a straight face and now when they do it’s very much with a forked tongue. When the ILF closes today, it is more than just the closure of a fund. I think it signifies very much the end of an idea and that idea was that society was very much prepared to meet its responsibilities to make sure that equality of opportunity was something more than words. And we took tangible steps like the Independent Living Fund which got people real lives beyond looking out the window and watching the world pass them by.
A second court case against the DWP on the closure of the Independent Living Fund (ILF) will take place at the Royal Courts of Justice on the 22nd and 23rd of October. It is expected to last one and half days.
There will be a vigil outside the courts from 12.30 on the 22nd to support the ILF users taking the case and to support our right to independent living as enshrined in the UN Convention on the Rights of Persons with Disabilities- article 19
Article 19: “Living independently and being included in the community”, states that “disabled people have a right to live in the community; with the support they need and can make choices like other people do”.
Please join with us to show your support!
The closure of the ILF has obvious implications for the UK’s chances of meeting such obligations. Most importantly for those disabled people who will lose this financial support they will lose any independence and choice in their lives. You can listen to how this vicious attack will affect disabled people at these links.
DPAC have had an odd kind of non-relationship with DRUK. We’ve disagreed about many things. For example, DPAC is for saving ILF, DRUK’s Sue Bott suggests this is something we should probably forget about, and that ‘Whilst the ILF has benefited many disabled people, claims that it has been at the forefront of independent living are a little exaggerated’. This is not the view of ILF users. See their stories, their lives, their experiences It is amazing that anyone can believe that passing ILF to local authorities who already say that without ring-fenced funding many ILF users will lose support and/or be institutionalised is something we need to accept while we all get together to talk about ‘new visions’.
The DRUK conference dedicated to a ‘new vision’ for independent living is also a confusing affair, not only are they embracing Simon Steven’s approach ( He who accused DPAC of murdering disabled people and was dropped from Leonard Cheshire’s sponsor program because of his outright abuse to other disabled people), but one of their advertised partners for this conference are Craegmoor .
Craegmoor are part of the Priory Group owned by Avent International which is a US Equity Company- changing times you may say-and you’re right. Maybe that’s what these new visions are about: capitalising on the market, private equity companies taking public money, and disability organisations getting in on the act- maybe neo-liberalism rather than disabled peoples’ rights and equality now make up ‘new visions’ of independent living
Craegmoor ‘s target market are those labelled with autism, learning difficulties and mental health issues. They take 85% of their funds from public funds. Craegmoor’s web site boasts of its residential homes:
We provide understanding and support for people with learning disabilities, autism and mental health problems in a variety of settings based on the individual’s abilities and needs. Our nationwide residential care services support people to develop the skills they need to live as independently as possible’.
Wait, since when were residential homes part of independent living? Weren’t these the very oppressions that early activists fought to get out of, and current activists (and ILF users) are fighting to stay out of?
Their brochure goes further:
Craegmoor is part of the Priory Group of Companies. From education to hospitals, care homes and secure facilities, the Priory Group of Companies offers individually tailored, multidisciplinary treatment programmes for those with complex educational needs or requiring acute, long-term and respite mental healthcare’.
Treatment programs? Not sounding very independent living or social model. As well as residential homes, secure ‘hospitals’ and segregated schools. It all sounds very daunting.
But there’s much more on the Priory group of companies too which is even less palatable concerning cover-ups and abuse. Until July 2013 Phillip Scott was Chief Executive if the name isnt familiar, he was also the Chief Executive for Southern Cross. Itself a subject of inquiry on institutional abuse and 19 unexplained deaths Craegmor say they transform lives, but in what way?
In May 2013 there was Melling Acres, ‘where inspectors reported major concerns about the care and welfare of its seven residents – care plans were poor, with scant information about physical health needs, there were limited activities and a lack of advocacy to enable people to express concerns about their care’. In September 2012 ‘following an anonymous tip, inspectors found residents at risk of abuse in Lammas Lodge, a home for young adults. There were not enough staff and what staff there were, inspectors found, were not properly trained to meet residents’ complex needs. There were six major areas of concern, including care and welfare, medication and safeguarding. The home, which was warned it must improve or face closure, has since been given a clean bill of health by the regulators’. Both homes were registered under Parkcare Homes’ so neither Priory or Craegmoor got the fall-out despite ownership.
This was not the case in 2012 when concerned relatives hid CCTV cameras in the room of Highbank hospital in Bury Manchester to reveal abuse by staff, not so with the Bentley Court home in Wolverhampton suspended by the council for what it called ‘safeguarding issues’ in 2010, a council that stopped sending those with dementia to Bentley Court, and not so in 2012 when what was described as the ‘Priory mental hospital’ in Windes on Bennet Lane was closed due to not meeting 10 standards of Government quality and safety including: Patients not being fully protected from the risk of abuse and their privacy, dignity and independence not being respected, staff not receiving necessary training, a lack of systems to assess and monitor the quality of the service provided, care plans did not always cover patients’ needs. There were also reports of patients attempting to escape during supervised visits into Widnes town centre.
So as said definitely NOT independent living.
In 2004 the then CEO of the Priory group Chai Patel said ‘My view is, if there is ever a conflict that involves choosing between care and profit, then we should not be involved in that environment,’ Given the examples above it seems profit is the defining factor.
It didn’t take long to find this information, it didn’t take long to realise that these are not the partners who should be with any organisation claiming to support independent living, even ‘new visions’. So maybe the question that needs to be asked is what exactly do DRUK support?
There are a few clues, in a recent blog piece by DRUK (dated 16th July) mentioning a very good Guardian piece by independent living activist John Evans, an ILF user, the last paragraph says: ‘Sue Bott, Director of Policy and Development at Disability Rights UK, has written a new blog which also discusses the role of the ILF but proposes that disabled people should concentrate their campaigning towards achieving a single integrated system that assesses people’s needs and allocates assistance and support based on the outcomes people could achieve in their communities and contribute to society’.
John Evans says everything we need to know-we have a vision for independent living and we already have a model forged by international independent living activists. There is nothing wrong with that model. There is no reason to stop fighting for it, abandon it or develop ‘visions’ or hallucinations of lesser systems in which we divide disabled people by perceived contributions to society-all disabled people are of value, all deserve to be supported. It is the ILF model that needs to be built upon and expanded to all-something that promotes real independent living.
The fact that a so-called user led organisation is putting forward anything different with the spectra of institutionalisation added to the mix is a tragic condemnation of all that disability activists have ever worked and fought for. We are appalled that DRUK are willing to sacrifice disabled people’s futures in this way and sadly can only assume this is to ensure on-going funding from the government.
People who don’t use the spoken word have a great deal to say about communication. People who do use the spoken word have a great deal to learn about communication from people who don’t.
Quiet Riot is a group of young adults who don’t use the spoken word. Quiet Riot had their first meeting four years ago. They meet in Manchester but come from around the UK, with members in Holland and Ireland.
Danian Allen (1984-2005)
The communication used by many members of Quiet Riot is known as Facilitated Communication Training (FCT) a strategy introduced into the UK by Marion Stanton, who is currently lead UK Assessor and trainer:
Marion invited Rosemary Crossley, from Australia to meet with families in the UK almost fifteen years ago, who in turn introduced many of the Quiet Riot members to FCT.
FCT is now used very effectively as a primary means of communication by many people around the UK. Using a key board on which to type, a trusted assistant (facilitator) supports the person to manage their body’s motor movements, which can be impaired as a result of sensory overloads/invasions as well as a wide diversity of other body motor issues.
FCT has fundamentally changed the opportunities for members of Quiet Riot:
” I am a man with no speech. I am a user of the pointing method of communication. I listen well and understand what is said… I am operating a perfectly weird body. I am wonderfully made..”
” I’m wondering if using Facilitated Communication will help to understand me better and give me some respect. I wish more people were given the chance to use facilitated communication it is great to be given a voice”
“Having no voice is not great but at least I can type good things. Being in good company like kids who talk. Talking with me makes me happy.”
“Trust your belief in your child. FC opens doors for those of us whose voices deny us use. People have to listen to our voices in the wilderness of disability. I can do things you elevate your expectation to. Look beneath the surface of appearance and see the qualities that are within”
I think FC is such a part of me that its difficult to think of it as an entity in it’s own right. I feel very lucky to have been surrounded by people who respected my communication giving me a limited experience of negativity around FC. I do however know that there are those who dismiss FC, I see this in their faces and reactions. My concerns are for those young disabled people who, for whatever reason, are affected by such situations.
Too bad I was seen as dumb of mind as well of mouth. Words offer all the possibilities of fine choices switching from a non-being to educated in the eyes of the world. The route to my intellect is now open”
” in the end the funny woman from Australia ( Rosemary Crossley) gave direct explanations, we ran away as slow as could be. Facilitation was a map just to find out about going A.W.O.L. I was not seen as a thinker with reason until I used typing. I type to talk differently. It is very good being able to communicate.”
” I am aware that you don’t realise how I am able to type. I go to university. Perhaps one day I will have a part on T.V. And you will have the opportunity to read my fan’s praises.”
Danian Allen (1984-2005)
“To be able to express myself as full as possible, without the correct method my answers are limited ” and “To be recognised as intelligent enabling me to live an independent life in my own home ”
“(FC ) allows me to communicate ,to have a voice.
Way in which it changed my life
I gave my opinion on my medical treatment
I Am Real
I am Real
Not a malfunctioning person with a confused mind
Just a normal thinking person
Who laughs, complains, shows sadness and happiness.
I am real”
Funding, Quiet Riot and the ODI
Quiet Riot campaigned for three years with no funding. Members financed their own attendance at the meetings in Manchester. They were brought together by a commitment, to talk with each other in a safe place, to plan campaigns and enjoy their Right to Communication: a right for every human being. The long term aims of Quiet Riot are to change the ways in which society welcomes and values people who do not use the spoken word.
Quiet Riot has been hosted and given hospitality by Greater Manchester Coalition of Disabled People (GMCDP), since the first meeting. ACE North, have also provided a venue for larger gatherings, again free of charge.
In our fourth year the The Edge Fund, a creative and democratic funding body, offered funding to Quiet Riot* which is being used to enable Quiet Riot to develop a customised website where they can reach out to local and global connections giving more people an understanding of FCT and an opportunity for the many people around the world who are needlessly denied their voice.
Funding for groups, at the “cutting edge” in societies, like Quiet Riot, is an important political issue. Given that the very existence of Quiet Riot provides a powerful reflection of people who have been failed within their own society. Quiet Riot has emerged despite statutory organisations who have failed to serve their legitimate support requirements.
The name of Quiet Riot appears to be a challenge for some, which was illustrated when Quiet Riot considered making a funding application to Office for Disability Issues (ODI), a government, established body to orchestrate the voice of disabled people in the UK. Quiet Riot was invited to change the name, to one less controversial ! – perhaps F— O– might be more appropriate! We have no funding from any government agency, which allows a freedom to critically question and challenge government and it’s agents, which has to be an essential feature of any campaigning group.
Quiet Riot members now in their twenties and thirties have each had the powerful support from their families, to have their voice heard, often against significant opposition from schooling authorities. An important lesson for schooling services to learn is that labels attached to any individual cannot convey anything of value about an individual. Such labels lead teachers into a cul-de-sac about an individual, requiring a great deal of time trying to find a way out.
Meaningful appreciations of another person’s skills, contributions and qualities will emerge via a mutual and respectful relationship. Such relationships can start with mutually respectful communication. The early schooling experience for many QR members was in segregated settings and very far from respectful :
“Special education is a cruel solution to educate people like me. I had the label (PMLD ) evil! I asked real people if they are aware of atrocities in school. Ask and ask again was anyone aware how awful it was doing stuff in special school. Emphasise it. The school system was a a vert (lawn) where seeds of alarm flew away. No one sussed what a serious affaire was swept away under the alters of Abraham . I was a walled prisoner in my own world dying slowly. When I returned from school each hour I sat thinking- give me a tool to communicate”
“Special school you think is bad. It is the nondescript way they teach is dull. They only had lots of detritus to share.”
The health service starts the process of diagnosis and categorisation of disabled people by creating labels that the schooling system uses to segregate and devalue disabled people. Authorities engage in convoluted assessments, measuring and testing the “capacity” of individuals. The disabled person is incidental to this process: it is an institutional response to legitimise prejudice and discrimination against a disabled person.
“I have no sex no gender apparently I only have this alleged affliction. reports and labels are the sum of my parts. There was never a label beyond disabled.i am just punk I am just an allocation of resources.”
Paul Thomas Allen
Institutions continue to segregate and devalue the human being as they have done for many decades.
” I have sorrow in my heart for you not learning the proper inclusion of me.”
Segregation at school age will tend to lead to more segregation in adult life – feeding the “services” that exist for the maintenance and protection of the institution and its processes.
Labels of “deficit” are attached to the individual and reflect the approach of an institution. We need to shift these labels away from the individual to the institution. Therefore, the constant need for institutions to measure and categorise people could be described as Obsessive Compulsive Disorder (OCD). Some Schools, Colleges and Universities have Profound and Multiple Learning Disabilities (PMLD) because they have failed to welcome and learn from people they continue to reject and exclude based upon the negative differences the institutions have determined and cultivated. This is particularly true of people who do not use the spoken word for their communication.
“In my pupil days at home I learned children whose bodies operated differently were not welcome really anywhere in the high schools in the myopic time we lived in. I thought then real choice was just for those talking people”
“Being alone I feel Dead”
It is soul destroying to continually have your contributions and efforts for participation thwarted by systematic indifference, ignorance and rejection. Such an approach to people is abusive and a total denial of their human rights. There continues to be a disturbing amount of confusion around the language and practice of inclusive education. We cannot give people inclusion, people have to Feel included.
” I invite experts to ask how we feel and our opinions. Autism really offers the world a fine lesson in humanities We require understanding, respect trust and love. In return we test the worlds ability to accept differences that exist between people ”
We know inclusion is working up and down the country in schools, colleges and universities for people with the diversity of impairments. We know people are included when we change the way we offer support in response to an individual’s particular requirements and when there is a welcome of difference and different voices for people to participate and contribute to the learning environment they are an integral part of.
” I would like to take this opportunity to say thank you for your accommodating and satisfying subject in question. There was very much calm and confident re-assurance surrounding me when in your real lecture of thought and wisdom. For me acceptance is from within a massive heart. Please have diversity bring you good joy in real life. With very fond and great thoughts for life – To Lesley Groom University Tutor from Heathar Barrett.
Hope and acceptance are a luxury I do enjoy. I feel very immense greatness about the university of my love and life in the making of a good great free future. We are moving forward.
“Taking The Time”
The thought of starting was ecstatic,
I wanted to learn so much.
To me the building was magic,
With life in its crumbling husk.
The thought of being ordinary,
Filled me with a joy I can’t tell.
Still the thought of that building keeps memory,
For me of pure water: a well.
It was because I had ordinary teachers, who recognised that I had skills, that I am where I am now, doing English at university. The special education system did not do that for me; it endlessly measured my incompetence.
However, when a school refuses to change, to welcome and accept different ways of learning, it cannot be overstated just how oppressive it is to be seen as different, when your difference is devalued by the organisation that claims to be a place of learning!
“It should be perpetuated that I have no differences. I just need really cool people to understand my ways. I am in my difference the despoiler of your pattern”
Paul Thomas Allen.
“I’m really tired of being different”
For people who do not use the spoken word there can be a continual and exhausting struggle to have your voice heard. For many people with the label of autism who use FCT, there can be a massive amount of time and energy required to overcome or manage their bodies’ sensory changes in order to type each and every word.
I am finding it very hard to be a free fast user of FC when I am not focused on feeling anxiety free”
communication board in hand doing ordinary things like buying an ice cream. This does not require a “transition plan” or “a service delivery audit” Or a specialist training programme to create a team of ” Whippy Therapist”
Heathar using her communication aide on a walk across the moors.
Again no “specialist service” getting in her path.
“I am an individual with my own wants. Sometimes my neurons do screw up and it takes time to fix them.”
Paul Thomas Allen
” being autistic causes sensory problems like bright lights which makes me feel dizzy and they burn my eyes. I also have problems with loud noises. They really scare me and make me feel really nervous”
“People inspire me all the time. It’s the easy things I envy like people who are pain free”
The only way we can get near to understanding what is required for an individual to type whilst having to manage the permutations of sensory invasions, which could relate to all the senses and more within any given learning environment, is by being respectful and responsive to the individual. Having a mutually respectful communication is essential.
As for what we can do to encourage change in Universities, I think there is a wider issue here. If FC is not accepted as a means of communication during examinations, as it was when I did my GCSE’s and A levels, then the next generation of disabled academics are thwarted in accessing university through such academic routes. The universities are poorer places for not having a fair representation of all students in their Halls and of course where we are never seen we are never easily accepted nor understood
Professionals have a responsibility to shift their lack of understanding or toleration of ignorance about different ways of communication and recognise that the denial of a person’s communication is not simply the denial of a learning experience but the consequences can be life threatening.
Anthony Kletzander from independent living to institutionalization
Anthony Kletzander, one of the founder members of Quiet Riot lived independently in Dublin in his own flat, with his own 24hr support. Because people, uninvited came into his life and chose to deny his FC, he was forced into an institution after he had experienced a full life living independently, with his own support staff. Within days he was given antipsychotic medication against his wishes, this resulted in emergency hospital treatment. Anthony’s voice continues to be denied at the institution.
“Tell them to stop giving me medication. I have no choice it makes my head feel strange”
“I would love to be in independent living. It is much better than residential.”
“Really trying to be accepted into society is very difficult and I am really saddened by this”
This is the clip about university. Nua Health Care in Ireland refuse to accept Anthony’s communication. They have also refused his right to independent living. Anthony was hospitalised twice from this institution over a period of three weeks. Anthony’s struggle continues made more difficult by Nua Health Care continuing to deny Anthony’s voice.
Anthony Kletzander. Typing with Marion Stanton just half hour after meeting with her. Nua Health Care refused her offer of support.
He watches, and you are scared.
Mute and Flalling
If he could talk he would tell.
So you silence him.
Maresa uses facilitated communication on her graduation day at Nottingham Trent University.
People who are prepared to deny a person’s communication when they don’t offer a meaningful alternative are abusing a person’s Human Rights.
It is an abuse of the power and authority of a psychologist or therapist to * deny a person’s means of communication, then have the effrontery to accept, a large fee, to carry out an “assessment” and make judgments and recommendations about the person’s life with whom they insist they cannot communicate!
” I have spent every day since birth when people think my head is bad like my body. Top physicians from all over came to inspect the Allen family, every one of them you imagine a certified genius. They ran me through their tests prosecuting me with steal augers. Pain like real despicable pain. Played with and investigated all facts collated their only conclusion was to find I was guilty. I was dense and better as a doorstop. I inhabited my own head just watching, I had to live the isolated life. I had to wait …. It did not occur to the world I am not retarded and a vicious anger I was cultivating. In my egg I stayed. In my soft manner to wither, it was sometimes insanity”
Paul -Thomas Allen.
I am unable to pronounce what thoughts are in my mind. When I use facilitation I am able to let others know how I feel. This is undoubtedly beneficial for my peace. Past appearances of the disabled are wrong. What people pronounce does not show how clever they are. I think it is because writing allows people to say exactly what they want. People make assumptions
Damian Allen ( 1984-2005)
Quiet Riot, DPAC and challenges powers and practices
Quiet Riot is an organisation that offers a much more powerful future for the person who does not use speech but insists that their voice is heard.
There is also a growing new network of organisations of disabled people in the UK and internationally who are challenging the oppressive practices and asserting the human rights of disabled people. It is co-ordinated by Disabled People against the Cuts (DPAC) This New Democratic and transparent approach is not seeking to justify the participation of disabled people around the UK but fundamentally challenging the powers and practices that seek to prevent their contribution and participation.
Facilitated Communication has enabled members of Quiet Riot to challenge the powers and practices that seek to silence people that do not use the spoken word.
Quiet Riot are engaged in subjects like: Biology, English literature, Creative Writing, Poetry, Philosophy, Jewish Religious Studies, Music, Geology, Ethics and Human Rights at Universities around the UK, Ireland and Holland. Thiandi Grooff a member of Quiet Riot and uses FC is in her final year of undergraduate study at a University in Amsterdam. She has been been engaged in a detailed qualitative study into group identity.
This study shows that a safe place for discussions is very important: the participants are welcomed, without threat by opponents who reject their way of communicating or the State, and every effort is made to overcome barriers to speaking. In this study the benefits of the collective identity for the members of the group ( Quiet Riot) were clear: a more powerful personal identity and self-esteem that led to more courage to speak up and to engage in relations and actions outside the group.”
FCT is used by increasing numbers of people around the world and with whom there is a growing connection via the internet. A powerful collective voice is emerging and demanding their space to be heard. It is a voice to reckoned with
Joe Whittaker April 2014
With many, many thanks to the great guys at Quiet Riot for putting this together and to Joe-DPAC fully support Quiet Riot and FCT.
We are very much looking forward to seeing everyone who can come to our national conference on Saturday but it is also important that those of you who can’t get there in person are able to take part. There are a number of ways you can do this:
Send messages of support and your ideas for what DPAC should focus on over the next year to email@example.com or @dis_ppl_protest.These will be put up on the graffiti wall at the conference and included in the notes from the day.
The European Network on Independent Living is calling on disabled people’s organisations across Europe to mobilise together on or near Monday 5 May 2014 through events, lobbying and protests to oppose the deep and ongoing cuts affecting disability services and benefits.
As disabled Independent Living Fund users, close family members and allies campaigning to defend independent living rights and stop the Fund’s closure, we urge disabled people’s organisations and the broader disability movement in England, Wales, Scotland and Northern Ireland to actively support this important day.
Even small events and public activities will help to raise awareness and act as a focal point for those who want to work together to oppose cuts to services and benefits, including the proposed closure of the Independent Living Fund in fifteen months.
It is vital that we also use this opportunity to reflect and learn from the mistakes associated with the public service reforms of a decade ago and the policies of ‘welfare reform’ and ‘personalisation’, including the use of ‘tick-box’ processes such as the Work Capability Assessment and the Resource Allocation Systems in social care to replace the individual and detailed assessment of need.
The fear of a ‘demographic time-bomb’ associated with growing numbers of older disabled people in their eighties and nineties, creating an age imbalance in a static or falling population, has been used to justify the raising of the pension age and the way pensions are calculated, the erosion and privatisation of the ‘welfare state’, cuts to health and social care, changes to the benefits systems, and latterly ‘austerity’.
But a growing population associated with increasing birth rates and the immigration of young adults, improved productivity and the greater fitness and activity levels of older people means the ‘demographic time-bomb’ in Britain may be a myth.
The political climate that has undermined independent living and disability rights, and is using positive ideas such as ‘direct payments’ and ‘individualised funding’ as vehicles for shifting financial responsibility for meeting social care needs from the state to the individual needs to be challenged.
We should no longer ignore the needs of the tens of thousands of children who are compelled by their family circumstances to be ‘young carers’ or the four hundred thousand disabled people confined to residential care or the way new concepts such as ‘prevention’, ‘reablement’ and ‘recovery’ are used to deny hundreds of thousands of disabled people the services they need.
Those who argue disabled people have been ‘liberated’ and the welfare state is ‘broken’ are wrong, and only do so in pursuit of a very negative agenda associated with privatisation and greater inequality between the ‘haves’ and ‘have nots’. The same people have been passive while the Independent Living Fund has been dismissed as ‘anachronistic’ and ‘paternalistic’, and the experience and wishes of the Fund’s users and their families ignored.
The disabled people’s movement across England, Wales, Scotland and Northern Ireland has a proud history of campaigning for independent living rights, but the gains of a generation ago for disabled people of working age are now under threat, as are the social opportunities pursued by many disabled people with complex conditions.
The innovations of the ‘independent living movement’ such as the ‘personal assistance’ approach, specialised information and training, and the self-assessment of personal needs have been marginalised. While our organisations and projects have struggled financially since the millennium, tens of millions of pounds have flowed towards those who supported the development of ‘personalisation’ and its ‘evidence base’.
But what is perhaps worst of all is many of those severely disabled people who have assumed the demanding responsibility of organising and managing their own complex personal assistance support, and do so fifty-two weeks a year without any financial rewards, are defined as being ‘economically inactive’.
A jigsaw of social equality has been slowly constructed since the end of slavery and the emergence of the Chartists through the right to vote, women’s suffrage, universal healthcare, the legalisation of same-sex relationships, reproductive rights for women, equal pay legislation, and the outlawing of racism and homophobia.
Limited advances in tackling disability and age discrimination are now being reversed, with the statutory right to an individual assessment of need by local councils being replaced. Local authorities are to be given the power to restrict a disabled person’s rights or freedom of action in pursuit of a legal duty to prevent or reduce a person’s need for social care services or personal assistance.
Social equality for all will never be achieved unless the needs of disabled children and adults are acknowledged, assessed and met as of right, and those children and young people compelled into a caring role within their family because of a lack of social services support are freed from this and allowed to develop socially in the same way as their peers. But this would require an unparalleled redistribution of wealth, and the redrawing of our society’s social priorities.
We believe disabled people of all ages should: have the right to live in the community free of the threat of segregation; be supported to stay healthy, safe and free of distress; and be freed from the harsh means-tests that are a feature of social care. Young disabled people in particular should be supported to pursue their dreams and aspirations free of the social barriers and discrimination that impeded many in the past. And because of the vital social role played by full-time family carers, they should be paid a social wage of at least fifty percent of the average wage of a skilled worker.
Our movement has a collective responsibility to defend the gains we have made, and renew its commitment to campaign for full civil and human rights for all disabled people and their families.
The ‘European Independent Living Day’ is an opportunity we should not waste.
Abi Vanes, sister of ILF user
Aine Young, family of ILF user
Andy Greene, Islington Disabled People Against Cuts
Angela Mountstephens, sister and carer of an ILF user
Ann Walawalkar, parent of an ILF user
Anne Novis MBE
Anne Pridmore, ILF user and Director of ‘Being the Boss’
Anne Rae, Chair of Greater Manchester Coalition of Disabled People
Ann Rainey, ILF user
Anne Whitehurst, ILF user
Ashleigh Myatt, personal assistant
Bill Riddall, Centre for Independent Living Northern Ireland
Brian Glaves, family carer and husband of ILF user
Brian Hilton, ILF user
Bob Ellard, member of Disabled People Against Cuts
Brenda Bayliss, mother of an ILF user
Caroline Martin, mother of an ILF user
Cath Gibson, ILF user
Charles Rainey, brother and carer of an ILF user
Christine Pickthall, ILF user
Christine Squires, ILF user
Christine Stringer, parent of an ILF user
Clare Palmer, mother of an ILF user
Colin Griffiths, ILF user
Colm Murphy, family of an ILF user
David Vanes, brother-in-law of ILF user
Debbie Domb, ILF user
Debbie Jolly, co-founder of Disabled People Against Cuts and Board member of the European Network on Independent Living
Monday morning at County Hall against the £190m cut imposed by the Coalition Government on Norfolk. The proposed cuts to social care will devastate disabled and older people’s lives and leave many ‘prisoners in their own homes’. No return to institutionalisation! Defend our right to independent living!
Protest Against the Cuts to Adult Social Care and Children’s Services
Monday 17 February
Protest from 8.00am
Lobby from 9am
Assemble outside County Hall and bring your banners!
On Friday 20th December 2013 Anthony was moved with his families agreement, by HSE, to a temporary accommodation. We will update you in due course as to how this accommodation works out. Anthony’s parents and sister visited Anthony in his new accommodation and Anthony typed “I am delighted to be out of that place”
Anthony’s Case Conference.
The farcical case conference, about Anthony Kletzander, at Redwood Institution ( run by the Talbot Group a private residential care company ) in Stamullin, Ireland on the 18th December 2013 really did have to be experienced to be believed.
In relation to Anthony Redwood’s practice is opaque and communication jargonised amongst consenting professionals. This is discreetly managed behind, closed doors!
I accompanied Anthony’s mother and sister for Anthony’s Case Conference, there had been no formal agenda nor any indication of professionals to be in attendance, prior to the meeting. We asked for Anthony to join us.
“We can’t have Anthony at the meeting because it is a professional meeting” firmly stated Ann Jackson, psychiatrist with Redwood,
“Anthony, is not invited to this meeting” said The Disabilities Manager, Geraldine Murphy from HSE, she continued ” Anthony can come in and hear what judgements have been made later”
We stated that we would not meet without Anthony presence and his participation.
Ann Jackson, said;
“Anthony would be overwhelmed by such a large gathering” We suggested, they should ask Anthony directly.
“Absolutely, not!” one of the growing number of professional suggested “these are clinical recommendations”.
We repeated we will not be attending any meeting without Anthony. With no sense of irony the Psychiatrist Ann Jackson exclaimed!
“We are a person centred organisation”
The Director of Redwood tried to usher us into the conference room, we repeated;
“Nothing about Anthony without Anthony”
If Professionals gather like a pack! Then if you critically question their status, and power by refusing to concede their dictates you are accused of ” bullying” “being aggressive” ” being intimidating”, “raising your voice” “finger pointing” individuals – this was the chorus from Redwood professionals. Psychiatrists, Psychologists, therapists, Managers and Directors all gathered around the three of us.
It is amusing that I was labelled as intimidating, because we refused to follow their instructions, when their offensive message, to a mother, that her son, was not allowed into his case conference was presented as reasonable.
One psychologist Ronan Gibney, then suggested Anthony be allowed into the meeting on just one condition: Anthony would
“not be allowed to use his communication light writer”
Ronan Gibney, said “his team” decided Anthony’s communication was not “credible”. I asked what evidence he had for making this judgement, since he had not observed Anthony type. He was unable to give a credible response.
There were about 15 professionals at the case conference, However, Anthony would not be present or be heard. We were there to listen to their conclusions.
Why would Redwood want to silence Anthony? If, in their words, Anthony’s communication “lacked credibility” It is because Anthony has been very clear and consistent in his communication that :
His dairy and gluten free diet stopped at Redwood.
Risperdal given despite pleas from his parents and the fact that his Family doctor advised of possible adverse reactions. All ignored by Redwood (still no formal explanation or apology from Redwood or HSE about Anthony’s emergency admittance to hospital, two days after Anthony’s parents met Ronan Gibney and following a series of seizures, days after he was given the medication. Anthony was still being given the antipsychotic medication at Rewood) Anthony never had seizures before and the hospital records which the family attained from their family doctor stated that Anthony did not have epilepsy. So what caused the seizures???
No one was prepared to use Anthony’s communication aid at Redwood ,despite it having been accepted, by Dr Corinne Pearson,Clinical Director at Redwood, in a conversation with Anthony and his parents prior to Anthony’s admission to Redwood.
Not surprisingly Redwood professionals are denying the very communication aid from which Anthony could describe in detail his experiences. Therefore, by dismissing Anthony’s voice as “lacking credibility” they continue to disguise their treatment of Anthony.
I stated to Redwood assessment team I was calling the response to Anthony as abusive, they were aghast that anyone could think such a thing let alone name it.
They asked me to leave the premises. I declined their offer. They said they would call the guards (police) I said I would wait. The police arrived, we went into a side room. We detailed events, I made a charge of abuse of Anthony to be formally noted. My allegations were recorded by the police.
Anthony’s mum was told the following day that Anthony would be discharged from Redwood immediately, back to the “care” of HSE, given that Joe Whittaker had made such an outrageous charge of abuse against Redwood.
We have no idea what the Redwood team had concluded in their reports. We know Redwood decision was made before the family arrived without Anthony being able to hear or comment on their judgements. The need for the family to comply in such a meeting would have given legitimacy to this illegitimate denial of Anthony’s rights. This we judged was why Redwood was desperate for the family to give Redwood procedures legitimacy.
How can any report, written by 15 or more professionals, regardless of their competence or academic qualifications, written about another human being, have any credibility if the voice of that human being has been denied during the compiling of that report?
The HSE insisted on and commissioned this spurious and unnecessary assessment of a young man who has been, drugged gagged and disorientated by damaging diet, at Redwood. An assessment that could have been conducted, over a couple of hours with Anthony, using his means of communication, who has consistently stated that he wants his own apartment, his own staff and attend university, as he had done before. HSE imposed this damaging assessment and turned Anthony’s life upside down.
Our immediate objective is to press HSE with Anthony to put in place Anthony’s legitimate wish to live independently.
In the long term it is important to press for a full and independent investigation into the treatment of Anthony at Redwood.
We will be contacting Kathleen Lynch, Minister of State with responsibilities for Disability, Department of Health ( firstname.lastname@example.org ) to ask her to initiate an independent investigation. However, when we said to Sheila Marshall from HSE that this would be our next action, she shrugged and said that any representation to the minister would simply come back to HSE. We also have to challenge the implication of such a complacent comment.
21st December 2013
Anthony is a young man of 25 and was living in his own rented apartment in Dublin for almost three years after many years of struggle. Anthony was enjoying the lifestyle he had chosen. This is the life of many young men at 25. However, Anthony has the label of Autism; he does not use speech but communicates very well by typing on his lightwriter.Anthony has made many presentations to groups of disabled people in Ireland and the UK describing his struggle to get his independent life style.
Anthony had his own 24/7 paid personal assistants, funded by HSE (National Health Service of Ireland) Anthony was very active and very healthy, his parents had supported him all his life, they worked extremely hard with committed professionals from around the world to ensure he had an appropriate, well balanced gluten and dairy free diet with plenty of exercise, regular running along the beach near Dublin and physical activity in the local Gym. In addition, for a number of semesters, Anthony was attending classes at a University in Dublin; this was the highlight of his week.
Anthony’s chosen life style was brought to an end when Áiseanna Tacaíochta (AT Network) based in Dublin took over responsibilities for Anthony’s support package, without Anthony’s consent, within 8 months the support was so inappropriate for Anthony that he was forced into Redwood Extended Care Facility, Stamullenfor a period of “assessment”
Anthony had already had 20 years of being assessed by professionals. But many people will know that for disabled people ineffective professionals don’t accept previous assessments they set about insisting on more and more expensive and intrusive assessments, often to underpin their initialprejudice. The irony of this ridiculous situation is that had the Senior Management at HSE had the wisdom to sit down with Anthony for a couple of hours and listen to him, they would have all the information they required.
Within three days of being in Redwood for “Assessment” Anthony was given Risperdral an antipsychotic medication and taken off his gluten and dairy free diet. Anthony made it clear to his parents that the “medication made him feel ill and very strange”. Anthony’s parents immediately protested to Redwood. They even had written evidence from Anthony’s GP of 15 years that the Risperdral medication could cause adverse reactions and his gluten and dairy free diet was essential to maintain balance within his body metabolism. Redwood refused to accept these representations, even when Anthony typed “make them stop giving me this medication”
Anthony’s parents met with Clinician at Redwood and again Redwood refused to accept their concern. Within three days of this meeting Anthony was admitted as an emergency patient to Drogheda Hospital, after having had several seizures. (Anthony had never experienced seizures before entering Redwood. After his stay in hospital Anthony was returned to Redwood where they continued with the same antipsychotic medication and kept him off his special diet.
Anthony is denied his preferred communication at Redwood
Dr Corrine Pearson, clinical Director at Redwood stated:
“when Anthony is using the lightwriter that he is not always looking at the keyboard whilst continuing to type a message. As a team this raises concerns about the validity of Anthony using the lightwriter to communicate”
This demonstrates a total lack of understanding of Anthony’s use of his peripheral vision when typing on his keyboard, common with many people who experience autism, but more importantly a blatant denial of Anthony’s right to use his preferred and essential means of communication, which he has used for over twelve years.
On the 18December 2013 there will be a case conference of staff from Redwood to decide on Anthony’s future placement. Anthony’s voice will not be heard at this meeting. There is every indication that they will be recommending that HSE place Anthony in a residential institution attached to Redwood, using the same regime.
I would urge you to contact Dr Corinne Pearson at Redwood and Geraldine Murphy at HSE in Dublin, Disability Manager and protest at this abuse of power, even a short message will help and show your concern for Anthony.
The more people speak up for Anthony, the more they will hear his voice.
Please continue sending the email until you get a meaningful response.
Please feel free to write your own detailed letter to Redwood and the HSE.However, for those people who want to make a quick response I would suggest the following:
Dear Dr Pearson and Ms Murphy,
Re: Anthony Kletzander
Please explain why you continue to give Anthony medication against his wishes and have stopped the diet essential for his wellbeing?
Anthony is clear that he wants to live in his own rented accommodation with his own personal support, which he has already experienced.
Please explain to me why Redwood and HSE are denying his human rights to direct his own lifestyle?
Can I also suggest you copy your email to The Director of Redwood and Senior Officer at HSE, Anthony’s TD (Irish MEP) and me so I can monitor the effectiveness of this campaign? Emails below
Please circulate this information to as many people and networks that you know who will be disturbed by its contents. This denial of Anthony’s human rights cannot be allowed to continue for Anthony or for any young person in Ireland.
What price independent lives?– launched on the United Nations Day of Disabled People – highlights the combined effect of a range of benefit cuts on disabled people’s incomes and the particular threat this poses to independent living.
Analysis of Habinteg’s detailed tenancy data at a six month point after the introduction of benefit cuts revealed the specific financial hardship faced by disabled tenants as a result of benefit restrictions. It shows that two thirds of tenants affected by the bedroom tax are disabled people.
However the impact of this is deepened when the same people face other benefit cuts and variable policies by local authorities. The result is that the ability for disabled people to pay the additional costs associated with living an independent life is being severely restricted.
Key findings of What price independent lives?:
·Two-thirds of Habinteg tenants affected by the bedroom tax are disabled people and of these, after six months of the new rules being in place, only a third had been exempted from paying by local authorities.
·56 per cent of Habinteg tenants living in wheelchair standard properties have not yet been given exempt status from the bedroom tax.
·Only 15 per cent of tenants who receive Disability Living Allowance (DLA) but live in general needs properties have been given bedroom tax exempt status by their local authority raising concerns that disabled people in this group may be faced with additionally reduced income when tested for eligibility for Personal Independence Payment (PIP).
·The localised criteria for bedroom tax exemption has created a new postcode lottery for disabled people with an inconsistent and unpredictable approach which varies between local authorities. Such variation reinforces the barriers disabled people face if they want to move, whether for job opportunities or other reasons, and deepens inequality between disabled and non-disabled people.
·Most tenants adversely affected by the bedroom tax are preparing to “stay and pay” in order to keep their existing property. The chronic shortage of wheelchair standard and accessible properties makes moving to downsize simply not an option.
·Where local authorities do not agree exempt status, Habinteg is supporting tenants to apply for financial support under the Discretionary Housing Payment (DHP) schemes. However, where information is available, it suggests that many disabled people are being refused DHP support. Three out of four case studies in the report have been refused DHPs. Some tenants have been given this support by their local authority while others in similar circumstances have been refused. This inconsistency makes it difficult for housing providers to manage their response and support tenants.
Habinteg is calling for the Government to repeal the bedroom tax, especially in respect of disabled people, review their stance on Universal Credit which will not cover service charging on disability-related adaptations and revise their plans to cut benefit payments under the transfer from Disability Living Allowance to Personal Independence Payments.
Habinteg Chief Executive, Paul Gamble, said: “Our report shows clearly the disproportionate impact from combined welfare reform policies on disabled people and highlights the very serious risk that the basic right to an independent life is threatened by the increased financial burden.
“We want the Government to acknowledge, understand and act on the cumulative impact of its welfare cuts agenda on disabled people. We are calling for the repeal of the bedroom tax, especially in respect of disabled people along with other steps to ensure their on-going right to independence and inclusion in their homes and communities.”
Baroness Rosalie Wilkins, Vice-Chair of the All-Party Parliamentary Disability Group, said: “Habinteg’s new research provides a rallying cry for choice, independence and equality. Independent living is a right not a privilege. The way in which the bedroom tax cuts the incomes of disabled people at a stroke and impinges on their ability to live independently is something that must be challenged.
“I fully endorse Habinteg in their efforts to persuade the government to listen to the evidence, call a halt to the bedroom tax and rethink a welfare benefits programme that is unfairly impacting on disabled people.”
A Habinteg tenant case study from What price independent lives? (who wished to remain anonymous) said: “I can’t begin to explain how stressful this whole process has been. It was a trauma to work out what I was going to do. I kept thinking why would they do this?
“I never believed that moving was an option as the lack of a purpose built one bedroom wheelchair accessible home gave me no choice but to find a way to pay.”
Please write to your MP urgently, asking them to save the Independent Living Fund which exists to help disabled people who need the highest levels of support. You can contact your MP easily through this website: www.writetothem.com.
Below is a message and links to a video from Mary, who is directly affected by welfare cuts. At the end of this email is a template you can use when writing to your MP.
I’m writing to let you know about an emergency that is happening to disabled people in the UK right now as you read this email.
Some of Britain’s most disabled people – including me – are facing losing our right to living independent lives. The Independent Living Fund is a pot of money that helps disabled people who need the highest levels of support to do more than just exist.
But David Cameron’s government has already closed the ILF to new applicants – and now he wants to stop it for the group of 18,500 people who already receive it.
That will mean people like me will end up sitting alone looking out of the window for most of the day unable to even go to the toilet. Until now, despite being severely disabled by rheumatoid arthritis and unable to walk or use my hands or arms, I’ve been able to live a fulfilling life. In 2012 I was a Gamesmaker, and I carried the Olympic torch. Now, I will be imprisoned at home, and will even have to give up my beloved dogs Jack and Molly.
At 66 years old, severely disabled, and totally human and wheelchair dependent, I have found myself looking at the deep pond at the bottom of my garden, no longer wanting to live. My weight has dropped down from 9 stone to 6 stone.
But I didn’t want to just sit around feeling sorry for myself, so I asked campaigners to make a film about me. The trailer is right here. But you can also watch the whole 15 minute film by going to http://vimeo.com/79330726
It’s not just the ILF the whole of social care provision is in crisis. Sooner or later this will affect most of you if you become disabled or when you get older.
Disabled people are also under attack from the Bedroom Tax, from the flawed Work Capability Assessment process and ATOS’ reviled tests, from the abolition of Disability Living Allowance,from cuts to council tax benefit and Benefit Caps.
We wonder what we’ve done to deserve it. We aren’t the ones who caused the banking crisis. But it seems as if we are the ones who are paying for it.
We wanted you to know what’s happening to disabled people under ‘Austerity’, because we thought if you did you’d want to campaign with us about it.
If you do, please write to your MP urgently, asking them to save the ILF. You can send them a letter at the House of Commons, or email them via www.theyworkforyou.com.
And please forward this email to everyone you know.
You could use this as a template:
The government has already been found guilty of illegally deciding to close the Independent Living Fund and now have to remake their decision. I believe that closing this fund would violate the human rights of disabled people who have the highest support needs to live independently in the community. Closure of the ILF would not only force disabled people back into residential care homes but also cause the UK to breach its obligations under the UN Convention on the Rights of Persons with Disabilities.
I urge you to watch this video, which gives a very real idea of how important this fund is, and to do everything you can to save this vital fund: http://vimeo.com/79330726
It’s been a busy few days for DPAC gathering evidence on the cumulative impact of cuts on disabled people, and on the crisis in independent living.On the 25th we heard moving and powerful testimonies of how the Government are ruining lives through their austerity regime. Disabled people are faced with a range of cuts and so called ‘reforms’ which are contravening our basic human rights. We are faced with stark choices between eating or heating while having our dignity stripped by a range of psychological attacks at the same time as having support removed.
Testimonies will be sent to the UN rapporteur on disability-thanks to everybody who came to London to tell their stories and to those that submitted their experiences through email. This event was originally arranged by Just Fair, however due to the rapporteur being unable to come to the UK due to illness DPAC and Inclusion London stepped in to run this at the last minute, so we could get these important stories out to the UN.
On the 26th the morning saw a hugely successful protest on fuel poverty organised by DPAC, Fuel Poverty Action, the Greater London Pensioners and UKUncut: ‘Bring down the Big Six – Fuel Poverty Kills!’ against the increase in fuel poverty deaths and increasing profits and prices of the big 6. Supporting groups included No Dash for Gas, Campaign Against Climate Change, Climate Revolution, Young Friends of the Earth, Frack Off London, Power for the People, Barnet Alliance for Public Services, Lewes Against the Cuts, SOAS Energy & Climate Change Society and Southwest Against Nuclear. There were also protests in Oxford, Lewes and Bristol.
In the afternoon of the 26th the Emergency meeting on the crisis in independent living took place at parliament hosted by DPAC and Inclusion London. An event originally planned by Just Fair to launch their report to the UN rapporteur which DPAC and Inclusion London stepped in to run with a new focus on the crisis in independent living. This was in response to the successful appeal outcome at the courts on the Independent Living Fund-and the continuing awareness of the crisis for ILF users, those trying to access local authority support and the Government’s apparent non-compliance with article 19 of the UN Convention on the Rights of Persons with Disabilities.
The afternoon launched DPAC’s report on the crisis in independent living and cumulative impacts of the cuts, one of many that DPAC is working on, as well as the film by Mary Laver an ILF user. The afternoon was complimented by speeches from John Evans and reflection on the past battles for independent living.We heard from the brilliant Louise Whitfield (one of the solicitors in the ILF case) and were treated to an excellent DPAC theatre performance which brought to life the reality of impacts on disabled people and the different barriers we face.
Despite extremely short notice the event was well attended by MPs and those from the Lords. Kate Green , Hywell Williams, Katy Clarke, Anne Begg, John McDonnell, Jim Shannon, Andy Slaughter, Baroness Campbell, Baroness Wilkins and a host of others including Mary Laver’s MP. Apologies were sent from Anne McGuire, Caroline Lucas, Lucy Powell, Jeremy Corbyn and Theresa Pierce
Mike Penning ‘our’ new minister for disability was invited but did not respond or send apologies!
Many thanks to all that attended, supported and worked so hard towards the afternoon-especially the many DPAC members and supporters that wrote to their MPs and publicised this. Some may ask why English national formal disability organisations with much more money and resources than us aren’t putting their energies into these types of activities all the time- we don’t have any answers or understanding on that.
We will have a more detailed report on the Emergency meeting on the Crisis in Independent Living event in Parliament with film and photos soon
1. Government’s plans for the future of the Independent Living Fund
On Monday 18 November, Plaid Cymru MP Hywel Williams will ask the Secretary of State for Work and Pensions Ian Duncan Smith:
‘What plans he has for the future of the Independent Living Fund.’
It is unclear what the Government’s response will be, but the question will be asked at 2.30pm.
It will be live on the BBC’s Parliament channel.
2. Sad News From Norway
We regret to report the sad news of the death of Bente Skansgard, the former President of the European Network on Independent Living and founder of ULOBA, a self-organised personal assistance cooperative with about 1000 disabled members throughout Norway. The following links to articles on the European Network on Independent Living web site provide more information about Bente’s life and work:
Anyone wishing to express support for Pam can do so on Facebook at ‘Pam Duncan for Falkirk’.
4. News from the Independent Living Fund
Following the Court of Appeal’s quashing of Esther McVey’s decision last year to close the Independent Living Fund (ILF), the DWP has stopped all processes within the ILF associated with preparing the Fund for closure. This is consistent with the Government’s assertion during the legal challenge to the ILF’s closure that no irreversible decisions or actions would be taken until 2014.
The ILF has suspended the Transfer Review Programme (TRP) that began in April 2013. It has instructed local authorities to destroy all information gathered so far during reviews that have taken place of ‘Group 1’ users that they did not have contact with previously. Consent for the data shared was specific to the TRP, therefore local authorities no longer have permission to keep it.
An ILF user is in Group 1 if they first received funding from the Independent Living Fund before 1 April 1993. While many have since 1993 approached their local authority for additional support on top of their ILF funding, there are hundreds of ILF users who have never had contact with their local social services. Any files on Group 1 users, who only have contact with ILF, that have already been handed to Local Authorities must now be destroyed.
The ILF is writing to all Group 1 users this affects. The ILF will also be writing to all its users to explain what will happen next. If there are any significant developments, the ILF has a ‘News’ section on its web pages through which it issues any statements or information. This can be found at:
5. DWP’s response to the Court of Appeal judgement
On 6 November, the Department for Work and Pensions issued a short statement through the ILF News page about the Appeal Court judgement which included the assertion:
“The judgement upheld the Department’s position on the consultation exercise itself, accepting that it had been carried out properly and fairly. They found that more documentary evidence was required to demonstrate that the Minister for Disabled People had considered all parts of the public sector equality duty fully.”
This is not an entirely accurate representation of what the Appeal Court said.
Information about the judgement can be found on the web site of solicitors Scott-Moncrieff Associates at:
It has also been published on the web sites of: Inclusion London, Disability Action In Islington, the European Network on Independent Living, We Are Spartacus, Disability Wales, The Hardest Hit Campaign, Disability Wales, Independent Living In Scotland, Learning Disability Alliance Scotland and the Sisters of Frida. The statement has also been published by a number of blogs including False Economy, and the Scottish Campaign For A Fair Society and National Shop Stewards Network.
Tanvi Vyas, Trailblazers Project Manager following the judgement said:
“We are delighted that the Government are not appealing this decision and will be reviewing it’s future based on further advice. However we would urge the Government to secure the future of the ILF as it is a lifeline for many disabled people who lead active independent lives. Many other disabled people could benefit from this, and the fact that future applications have closed is to the detriment of many disabled people who want to lead fulfilling independent lives.”
•Disability Now article featuring support for the Appeal Court victory from John Evans, one of the founders of the independent living rights movement in Britain, who said:
“I was surprised by the judgement because I was expecting the worst. We’ve had such a drastic and terrible five or six years. I’d painted a really black picture so this has made it even better for me. I’ve got nothing but admiration for those five people who put their lives and bodies on the line, who took the government to court, damaged them and won.”
•An agnostic article by Rich Watts on his Arbitrary Consent blog which manages to combine welcoming the Appeal Court victory with the defence of Melanie Henwood and Bob Hudson’s appalling ‘independent review’ of the Independent Living Fund in 2006 which recommended it should close given the planned introduction of personal budgets, a key component of the ‘personalisation’ policy. Watts blog will no doubt have been welcomed by his employer, the quietly influential National Development Team for Inclusion, because if the rationale and methodology of the Henwood/Hudson report is ever scrutinised and discredited, it would throw the door open to a re-examination of ‘personalisation’ and its consequences, and the role of those who have developed and championed it:
Add your voice to DPAC’s survey–what needs to change? What are the key issues for disabled people under this Government? We know most of them-but what about specific barriers: education, transport, building more accessible housing-are they getting worse or better?…Tell us…so it’s not just us arguing for change…
Statement by Anne Pridmore, Gabriel Pepper and Stuart Bracking
As three of the Independent Living Fund users who have challenged the legality of the government’s decision to close the Fund, we welcome the Appeal Court’s unanimous ruling that this decision should be quashed.
Given the Government has decided not to appeal to the Supreme Court, the new Disabled People’s Minister Mike Penning will now have to reconsider the Government’s approach to the future of the Independent Living Fund and its users.
Rather than being the ‘privileged group’ referred to in the High Court judgement, the Appeal Court has acknowledged the potentially very grave impact the closure of the Fund would have on its users, putting seriously in peril the ability of a large number of people to live independent lives in their own homes, and pursue activities such as employment and education.
They concluded that when Disabled People’s Minister Esther McVey made her decision in 2012 to finally close the Fund by April 2015, she did not properly consider the need to advance our equality of opportunity, minimise the disadvantage we face, encourage independent living, and promote our participation in public life and other social activities.
For a generation, the Independent Living Fund has provided funding to support disabled people with complex conditions who need personal assistance to live in the community.
Twenty years ago, Disabled People’s Minister Nicholas Scott who founded the Fund in 1988 explained its importance to the House of Commons (25/2/1993): “It has helped those severely disabled people who did not want to go into residential care but who could not live in the community without a considerable degree of domiciliary support to maintain their independence. That is something that we can all applaud and welcome.” This is as true today as it was then.
In the same speech, Nicholas Scott also acknowledged there were limits to the financial support local authority social services could provide some disabled people: “If it is necessary for extra help to be provided….it will be open to the social worker who assesses the needs of disabled people to say, ‘We can provide services up to this level but we believe that a further level of care is necessary,’ and then to turn to the Independent Living Fund.”
The Independent Living Fund has provided a platform for social opportunities to be pursued by severely disabled people in large numbers for the first time in history.
The careers, family life, friendships, social activities and roles people have built for themselves could be undermined and in many cases dismantled if the Fund closes.
Although the Appeal Court ruled the consultation which preceded Esther McVey’s closure decision was lawful, we believe there is now an opportunity to reflect on our society’s responsibilities towards those who rely on the welfare state to keep them safe, healthy and free of distress.
Last year, 2000 individuals and organisations responded to this consultation, but the Court of Appeal held the real substance of the consultation responses were not conveyed to Disabled People’s Minister Esther McVey. An opportunity for an open, democratic debate was lost.
By responding to the World Health Organisation’s recommendation in the World Report on Disability that countries should provide services in the community and not in residential institutions or segregated settings and plan how to achieve this, the human and civil rights of disabled people of all ages could be respected, not just those of Independent Living Fund users
Until a decision is taken to save the Independent Living Fund and open it to new applicants with adequate funding to meet people’s individually assessed needs, the fear many disabled people have expressed about their future will not disappear.
This fear stems from an understanding of the impact limited support in the community will have on people’s life chances, or for some of us the low standards and rigid approaches to personal care found in residential and nursing homes which place people at risk of skin conditions, sores and sepsis.
Many Independent Living Fund users are also acutely aware that, as long-term employers of personal assistants, if they are forced into residential care their knowledge of the law and care standards will bring them into collision with poor management and abusive cultures where they exist.
There is also a significant risk for people with learning difficulties and/or autism of physical and emotional abuse in segregated settings where restraint and drugs are used to control behaviour that is defined as ‘challenging’ rather than being approached with patience, compassion and kindness.
The fear of residential care that exists among Independent Living Fund users with ‘round-the-clock’ needs also exists among large layers of the general public.
When reconsidering the Government’s approach to the future of the Independent Living Fund, the new Disabled People’s Minister Mike Penning could give the Fund a long-term future under the democratic control of its users, but also commit the Government to respect existing rights to an individual assessment of need.
His Government could give disabled people of all ages the right to live in the community throughout their lives with the personal assistance and professional services they need, rather than the artificial and segregated environments found in residential care.
We urge Mike Penning to grasp this opportunity and remove the uncertainty many thousands of severely disabled people and their families have experienced for several years.
We would like to express our sincerest thanks to: our fellow claimants Paris L’amour and John Aspinall and his parents Evonne and Paul Taylforth; the tireless work of solicitors Louise Whitfield of Deighton Pierce Glynn, Kate Whittaker and Diane Astin of Scott-Moncrieff and Associates, and our barrister Mr David Wolfe QC; the supportive intervention of the Equality and Human Rights Commission; and Independent Living Fund user Kevin Caulfield’s networking and guidance during the case.
We also acknowledge those Independent Living Fund users who have highlighted the impact closure would have on their lives, particularly Penny Pepper, Sophie Partridge and Mary Laver, which is not easy given the privacy most Independent Living Fund users and their families strive for.
We would also like to thank: Disabled People Against Cuts and Inclusion London for the campaign coordinated by Linda Burnip, Debbie Jolly, Tracey Lazard and Ellen Clifford; other users of the Fund and disabled activists who have attended protests and vigils and supported the campaign; the two thousand organisations and largely anonymous individuals who responded to the Independent Living Fund consultation a year ago; the support of the PCS union and the workers at the Independent Living Fund; our personal assistants; the work of campaigning journalist Kate Belgrave; and the consistent reporting of this issue by John Pring at the Disability News Service.
The future is ours to shape, but only if the personal assistance we need is present.
On the 14th October, five ILF users will appeal against the previous court decision that the ILF consultation was carried out fairly at the Royal Courts of Justice. DPAC will be there again and, again have a vigil outside the courts to show support-we will update with further details as they become available.