Here is a list of Local Authority responses to questions we asked about the closure of the Independent Living Fund. The questions were
1: Will monies transferred from the closure of the ILF to your local
authority be ring fenced to ILF recipients in your area? If no decision
has yet been taken, what is the process and timescale for this happening?
2: Please could you state the process and timescale for meeting with
current ILF recipients to prepare personal care plans for 1st July 2015
onwards (bearing in mind the assessments at the Transfer Review visits
only indicate desired outcomes and do not produce an actual care
3: Will you be making any special dispensation for allowing ILF
users to continue to employ their current & in many cases long standing
carers of many years, bearing in mind some may be paid a higher rate than
what LA’s may usually advise and be family members too?
If you can’t find your LA on this list it is because they have failed to answer, although in most cases it may be fair to say those that have might as well not have bothered since few give any useful information. Many thanks to Frank Black for making the FOI submissions.
Please can you tell me how many people in Wokingham Borough Council area receive 24 x 7 care packages using the Independent Living Fund.
-There are 16 clients in Wokingham currently receiving ILF funding however as they receive funding via Direct Payments we do not have the information regarding their specific care arrangements.
2. How long before June 30th 2015 will these people know what will happen to their funding?
-Wokingham Borough Council’s policy and transition programme are currently being finalised, so we are unable to respond to this question at this point in time.
3. Please can you inform me of the plans being made for migration of people from ILF funded 24 x 7 care to Council funded care before the closure of the ILF.
-Wokingham Borough Council’s policy and transition programme are currently being finalised, so we are unable to respond to this question at this point in time.
[The following message is from Joe Whittaker, supporter and friend of Anthony]
To the thousands of people who have already given Anthony Kletzander support- Thank You.
We now need your financial support to challenge the inexplicable legal action taken against Anthony’s parents, Linda and Siegfried Kletzander, by The Health Service Executive(HSE) of Ireland.
Anthony is a young man with autism, 26 years old. He does not use speech, he communicates very clearly using a keyboard.
( see video above of Anthony meeting with his friend Thiandi who came to visit Anthony from Amsterdam. It was after this visit that Anthony’s parents were told he could have no friends on Nua premises.)
Anthony has already experienced independent living in Dublin.
Now he has been institutionalised in Nua Healthcare by The HSE in Ireland.
As this donation request goes out Anthony is : –
– denied his own communication.
– medicated without his consent.
– forced into unpaid daily farm work (which he hates)
– denied his right to independent living.
There is an active campaign from people around the world in support of Anthony’s struggle.
The Health Service Executive of Ireland have served legal papers on Anthony’s parents, expecting the courts to order a third party to take control of Anthony’s future, with a view to alienating Anthony further from his family and friends and to shroud his treatment into a deeper secrecy, away from critical scrutiny.
Anthony has already been denied visits from friends on institution premises. Such a prospect, that is hard to imagine for a non-disabled person, but ever more restrictions are a frightening probability for a disabled person if HSE succeed in their legal actions against Anthony’s parents.
This is a dreadful injustice against Anthony and a threat to every disabled person in Ireland who do not have access to finance, to hold the, abuse of power, of Statutory Services to account.
There is a very real fear that Anthony could be hidden from plain sight on a permanent basis.
The action taken by Anthony’s family to stop the HSE legal action has already cost the family Euro 2,500, which poses a significant problem for the Kletzander family. If the case goes to the Irish high court , the costs will be considerably higher.
We are asking people to make a contribution to Free Anthony and his family from this injustice : every pound, every euro, every dollar, every cent we receive will be used to continue the legal challenge of the denial of Anthony’s human rights, to live independently, free from institutional interference, free from forced medication and free from forced labour.
The HSE are using money from the Irish public purse, to mount their legal action against Anthony’s parents. HSE use the same public purse to institutionalise Anthony in Nua Healthcare, which we believe to be in the region of €300,000 – €400,000 each year. HSE could use this money to support Anthony to live independently, but they refuse to do so and they refuse to explain their inexplicable actions.
Please support Anthony and his family with your donation:
Every donation received will be used to challenge this outrageous injustice.
Please pass this information on to your family friends and organisations, who will recognise this outrage against Anthony and his parents, desperate to support Anthony’s rights, as a threat to all disabled people wanting to live independently.
DPAC are active supporters of the Anthony Kletzander Campaign
Tweet for Anthony!
Please Help #AnthonyKletzander by joining DPAC in tweeting an appeal for donations for his legal fight for Independent Living. We want to reach a wide audience with this appeal so we have prepared a list of tweets, with hashtags for popular TV programmes, such as #emmerdale, #qi, #OneshowWe have listed each program by day and time along with tweets that you can send – all you need to do is scroll down to the current date and time, and tweet to the programs that you find!The “Tweet for Anthony” Tweetpage is here: http://dftr.org.uk/Songbird.php?TweetFile=AnthonyK
Below are ALLFIE’s (Alliance for Inclusive Education) crucial principles for inclusive education. We all agree that education is a fundamental part of life, as such these principles are crucial for disabled children and adults and for their right to be educated in an inclusive enviroment.
DPAC fully supports ALLFIE’s principles and calls for ‘Education not segregation’ for all Deaf and disabled learners.
The principles are:
Diversity enriches and strengthens all communities;
· All learner’s different learning styles and achievements are equally valued, respected and celebrated by society;
· All learners to be enabled to fulfil their potential by taking into account individual requirements and needs;
· Support to be guaranteed and fully resourced across the whole learning experience;
· All learners need friendship and support from people of their own age.
· All children and young people to be educated together as equals in their local communities;
· Inclusive Education is incompatible with segregated provision both within and outside mainstream education;
DWP PARLIAMENTARY SELECT COMMITTEE FINAL EVIDENCE SESSION ON ACCESS TO WORK INQUIRY.
WHEN: Wednesday, 29th October 2014.
TIME: 9.30 a.m.
GIVING EVIDENCE: Mark Harper MP, Minister for Disabled People.
Colin Stewart, Work Services Director.
WHERE: Wilson Room, Portcullis House, Bridge Street, London, SW1A 2LW
Please note, BSL sign interpreter will be provided in the public gallery of the Wilson Room.
TV Channels to watch the session on, BBC Parliament and Democracy live, BBC Parliament recording will include BSL sign interpretation of the session, or you can watch on the internet www.parliament.uk click on what’s on, click on select committee, scroll down to DWP select committee and click on video if watching via computer or laptop.
HOW TO GET THERE: nearest underground station is Westminster, step free access is on Jubilee Line, accessible lift to ticket hall, then accessible lift to street level.
Buses that stop nearest to Parliament are, 3, 11, 12, 24, 53, 87, 88, 148, 159, and 211.
Please allow extra time to get to Portcullis House as security level is set at Severe, wheelchair access entrance is located at the front of the building in the middle, press the wheelchair symbol, and go through security, then to the reception desk and ask for Wilson Room, (a member of staff will escort you to the lift and the floor of where the Wilson Room is located.)
The final session of the Access to Work Inquiry will include the following:
To explore the Government’s position on a range of issues highlighted during the inquiry.
Potential for substantially increased funding of AtW in line with the recommendations of the Sayce Review.
DWP’s general approach to the administration of the scheme, including its approach to self employment and entrepreneurship.
Specific administrative issues including paper based application and invoicing processes and the recently introduced call centre system.
The clarity, transparency and consistency of the award decision making and review processes.
The level of disability awareness of DWP Staff administrating the scheme.
The guidance on funding for support workers.
Referral routes into the workplace, mental health support services and AtW employer cost sharing arrangements.
Today was the first day of two days of a second court case against the DWP against the closure of the Independent Living Fund. Messages of support poured in. Many people turned out to support the vigil. The Strand was later blocked , as Kate Belgrave said : blocking roads is not extreme, cutting care is. There was wide support from Inclusion London, Norfolk and Suffolk DPAC local DPACs, the Greater Manchester Coalition of Disabled People, Transport for All, Winvisable, PCS Union, the TUC, Ros Wyne Jones Real Lives at the Daily Mirror, OCAP and from as far as Toronto Canada where a simultaneous vigil was held. John McDonnell MP a great supporter of DPAC also came to speak.
Many messages of support came through some of which are below.
“@Dis_PPL_Protest good luck today! Amazing work being done in the face of such powerful opposition :)”
“Let’s hope justice prevails to counter rabidly cruel government”
“Best of luck and so many thanks to all at #ILF court case”
“many thanks for time and effort to all involved”
“Sending support from Toronto to London today. Disabled lives are worth it. #SaveILF @Dis_PPL_Protest pic.twitter.com/90YJEt7bL4”
“vigil at the RCJ supporting the campaign to #SaveILF”
“Good luck. You are courageous. The world is watching”.
“Good to see the likes of @Dis_PPL_Protest taking up the incentive to challenge the Govt on the ILF, much needed support lacking from orgs.”
.”@johnmcdonnellMP speaking in solidarity at #saveilf vigil today at Royal Courts of Justice”
“Shoutout to the awesome campaigners the #saveilf campaign, outside the Royal Courts of Justice today”
“Grateful thanks to @Dis_PPL_Protest & all who are fighting so hard to #SaveILF, ILF support for the disabled means having a life to LIVE”
“The TUC general council sends its solidarity and support for the Group fighting against the closure of the ILF in the High Court. Sean”
“All best wishes from WinVisible for ILF case – sorry we can’t make it but thinking of you all there. Claire”
Awoken by Brody (one of my cocker spaniels puppies) kissing my face swiftly followed by Eben and Suzie Brodys mother. Thought I better get up and greet the day so pressed the buzzer for my PA had a quick wee then waited for my first cuppa in bed, don’t get up too early these days.
Had breakfast (in bed) and decided to have strip wash rather than a shower. Asked PA to check for pressure sores as I can easily get them can result in stay in hospital. P A assisted me to get dressed and went into bathroom for teeth hygiene all facilitated by PA. Had BIG mug of coffee and felt ready for day.
Went with PA to get vegetables for dinner and took Eben with me. Had long conversation with my choirmaster’s husband about our new season. Without ILF I would not be able follow my love of singing. Arrived home and asked PA to unlock office and fire up computer. Answered some emails then had lunch prepared by PA. Made sure my fluid levels were up as had nasty scare last week because I failed to drink enough I couldn’t go for nine hours. It is crucial to drink on the hour failure to do this will damage my kidneys. This of course does result in many trips to the toilet facilitated by PA and also the odd accident which means I have to have another shower and change of clothes. In the bad old days before ILF I remember having to dry my clothes (I had on) with a hair dryer. I also was forced into having a hysterectomy because I had very heavy periods and could not keep clean because of having only “pop ins” a few times a day. My ex husband was infertile and we were refused AID or adoption. I was still young enough to have children and this has always been a sadness. Had lunch mushrooms on toast prepared by my PA.
Need to stop now as am going to exercise three dogs up the recreation ground with my PA who will assist me and pick up the pooh!
Had pork roast cooked by PA.
Had bad night owing to pain needed turning six times. Failure to do this results in pressure sore with can lead to skin graft.
23rd August 2014
Took dogs with PA walk on canal – got wet which necessitated PA changing me – find this tiring. Decided to have a shower and hair wash etc. Remember the days when I had to rely on bath nurse once a week my day was Monday and of course every Bank Holiday falls on a Monday so that meant waiting three weeks.
In the evening I had dinner but as it was freezing decided to go to bed at 8.00 pm and play bridge on my ipad. No more not knowing when the community nurse would come at any time to suit her. This is 28 years ago and I was much younger then, even though I was the youngest on her list she often came at 7.00 pm. I am sure it was more about “power and control” rather than putting me to bed at a reasonable time. Had cup of tea and chat with PA had drugs (prescription) and settled down to good book. Another very disturbed night – having to wake my PA five times to reposition me.
25th August collect my friend from her home to go to the cinema, My PA drives for me and I can recall the days before ILF when I was imprisoned in my own home. I had absolutely no social life at all. When we got home me and my PA took my two dogs to the local recreation park. This was only possible because my PA was able to pick up the dog pooh.
26th August had to get up early to be ready for my student who I am teaching to update our website. The beauty of having ILF to fund PAs is that if I need to get up early or fancy a lie in I am able to do this. Before the ILF I was at the mercy of the home help service and had no choice or control in my life. Going back to the mid 80s when I was entirely dependent on statuary services I was controlled by whoever determined the home carers hours. I remember raging about the fact that it was impossible to visit friends or have relationships because I never knew the time people would turn up. There was a particular occasion when I met a man and invited home to stay overnight with me. I rang the social services department to ask them to cancel my visit. But they told me that was impossible so I locked the back door and stuck a notice on the door which read “NO HELP NEEDED MAN IN HOUSE”. During the afternoon I was visited by the person who operates the volunteer centre. She came to give me feedback on the IT support I had been giving to an elderly lady in my district. I had only been able to do this because my PA was able to take and collect me.
27th August Had to be up early for PA training as I am recruiting a new PA this went on until 11.00 am then I collected my friend and took her to Leicester to choose a new outfit for a wedding. Ate lunch in town then came home all with the support of my PA.
28th August Went down town with PA grocery shopping. Then made orange and chocolate cake with PA looks and tastes yummy!
30th August Had leisurely breakfast made by PA then had lunch after which my PA drove me to cinema film was mediocre. Had lovely roast cooked by PA. Both dogs up the rec with my PA – dogs had lovely time. Watched some TV then decided to have an early night, perhaps readers might think nothing unusual about this but in the old days before ILF I had no choice as to when I went to bed.
31st August Trip to Aldi to purchase the food for our holiday in two weeks. Came home PA put shopping away and we both had lunch. Mark Williams-My ILF Photo Diary
This diary aims to show how the ILF helps me to lead an independent life in the community. Without the ILF I would be trapped in my own home with no life.
Saturday 23rd August 2014
Today I met up with two friends, one of whom I knew at school and had lunch with them in a café. This is how the ILF helps with my social life.
Thursday 28th August 2014
Today I went to an accessible climbing event where I sat on the Bristol Disability Equality Forum Stall in order to publicise the group and get more members.
Keep up with our new ILF Diaries page coming soon
join the facebook group or find other ways to support the campaign at the link
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.
The campaign to save the Independent living Fund (ILF) is now at its most crucial stage, because it involves you.
Following the high profile Westminster Abbey sit-in and the tea parties held outside DWP offices, we’re now asking ILF recipients to invite MPs to their homes to show them exactly what the ILF means in reality and why it must be kept.
This Summer is a great time to lobby MPs as they’ll be back in their constituencies working hard in the hope of securing votes in the run up to the 2015 General Election.
Please take the simple steps in this toolkit and let us know how it goes so we can target politicians and do everything we can together to save the ILF.
It includes writing a letter/email to your MP, writing to the local paper, meeting your MP, arguments and briefing and an invitation for your MP to the MP Drop in on 2nd September
Independent Living fund Drop in
– with BBC Silent Witness actress Liz Carr
2 September 2014; 2 – 4pm; House of Commons Committee Room 19
This drop in session will be a chance for MPs to find out more about the closure of the ILF which currently supports nearly 18,000 disabled people with the highest support needs to live independently in the community, to contribute to society in employment, education, volunteering, as family members, friends and as members of our communities and to build the local economy through employing teams of Personal Assistants.
The surgery will be an opportunity to ask questions and to speak to Liz who has been enabled, through support from the ILF, to progress an acting career that has spanned stand-up comedy, presenting for BBC and primetime television.
Also in attendance to answer your questions will be a former ILF staff representative and a disabled person who missed out on the ILF through its closure to new applicants in 2010 and whose experiences reflect those of many other disabled people now excluded from participating in areas of life that non-disabled people take for granted.
The Drop in is being organized by PCS Union, Disabled People Against Cuts and Inclusion London.
Permission has now been granted and the second ILF Court Case will go ahead.
The papers went to a judge today and he has granted both permission and expedition (which means speeding up the usual timetable for the court case). The hearing should be “as soon as possible”, which could mean anything at the moment, as the judges are on holiday and the court has a very bad backlog, but we would hope we will get a trial date for some time in September/October as planned.
On behalf of all ILF recipients we’d like to say a continuing thank you to those involved in taking the case. We know from experience just how gruelling and stressful taking legal challenges can be and we offer our solidarity with you all.
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.
The ILF has transformed People’s lives. The Independent Living Fund does what it says on the tin – it liberates people who wouldn’t otherwise be able to, to live independently. It lets them make choices about how they live – things we often take for granted: when to get up or go to bed, what and when to eat. It allows them to work, to be active in the community and to live in their own homes.
I challenge the Minister today to guarantee that those currently in receipt of ILF won’t become less independent as a result of his decision to close it in June 2015. Because that’s what people fear. That’s what they are frightened of. They fear losing their jobs, losing those staff they employ to support them and losing their independence. They fear being forced out of their homes and into institutions.
The Minister may say he’s passing the monies and responsibility to Local Authorities but this will not ease their fear. And he is rather naïve if he thinks that absolves him from his responsibilities for this decision. I’m afraid he can’t get away with devolving responsibility and blame for the consequences of his decision to others. That’s why I ask him for these guarantees today. For a start Disabled People Against Cuts calculate the current annual cost of support at around £288 million yet the government only identified £262 million to transfer to local authorities. And it gives no reassurances that this money will be ring fenced to be spent only on supporting disabled people to live independently rather than absorbed into broader council budgets.
According to SCOPE £2.68 billion has been cut from adult social care budgets in the last 3 years alone, equating to 20 per cent of net spending. This is happening at a time when the numbers of working-age disabled people needing care is projected to rise by 9.2% from 2010 to 2020. In a recent survey 40% of disabled people reported that social care services already fail to meet their basic needs like washing, dressing or getting out of the house. And 47% of respondents said that the services they receive do not enable them to take part in community life.
So it’s not surprising that people are desperately worried about their future.
The worry is that continued underfunding of social care will mean the care system will simply not be able to support disabled people to live independently. The lack of reference to ‘independent living’ under the definition of the ‘well-being principle’ in the Care Bill which local authorities will need to take into account when providing care further fuels this anxiety.
And it’s not just people in receipt of ILF who are worried – it’s their friends, their carers and their families too. The cases of two of my constituents illustrate this well.
Ashley Harrison is a Scunthorpe United fan like me cheering on the Iron at Glanford Park. At 10 months old he was diagnosed with cerebral palsy. He will turn 30 this year. Ashley has lived in his own bungalow since 2006. The ILF allows him to employ his own team of carers. Ashley is an inspirational man, a fighter but he is worried that the control over his future is being taken away from him.
His mother says:
‘The closure of the ILF would be nothing less than devastating for us as a family. Since Ashley was awarded his ILF allowance the whole family’s lives have changed for the better. ILF understands Ashley’s needs and always do everything they can to constantly improve Ashley’s life and enable him to live independently.
As a family naturally all we have ever wanted is the best for Ashley, which the ILF has helped us achieve. The ILF has always seemed to be the leading and positive force at meetings ensuring that social services match and meet Ashley’s needs. Without the ILF we all face a very uncertain future. The uncertainty that Ashley faced in his early years prior to receiving his ILF award have been daunting, frustrating and of course a constant battle with social services.
The alleged “smooth transfer” over to social services is already proving to be nothing of the sort. Each and every meeting we hold (which are incredibly frequent) leave us having to justify Ashley’s needs as a disabled person. The assessments they ask us to complete are totally unsuitable for the severely disabled.
All of the disabled people living independently with the help of ILF are living their lives to the full. The fear is that if ILF closes these people will lose their human rights and dignity to live their lives as they should.
As a mother who’s fought the last 30 years for Ashley to have the life he wants and of course deserves, I dread to think what the next generation of disabled people will have to endure without the positive support of the ILF.
I beg you to listen to myself as a mother of a disabled son and also listen to all those disabled voices who deserve to be heard.
Give each and every person the ability to live and achieve their dreams just as you and I can.
The Paralympics just proves how amazing disabled people can be!!!’
Jon Clayton is also in receipt of ILF. Like Ashley he has carers whom he employs who understand his disability. His sister writes
‘My brother Jon is quadriplegic having been involved in an accident which was not his fault at the age of 18. He is now 54.
He is one of life’s truly inspirational people; an accomplished mouth artist – a gift he only knew he had after his life changing accident- living independently in his own home. He freely gives his time mentoring other disabled persons, helping them come to terms with another life. A life without limbs. A life without walking.
He has always sought to live as normal a life as possible. Having gone through marriage, divorce, being a step father, losing a partner.
He is both ordinary and extraordinary.
He relies heavily on his full time carers. Carers who he personally has ensured are trained to an appropriate and exceptional level to look after a person with specific and defined needs. One false move and he could (and has) spent 18 months bed bound with a pressure sore at the expense of some ill trained nurse.
His carers are trusted to ensure and give a high level of care, entrusted with the most personal of tasks from catheter changing, toileting, dressing etc. This has been part of Jon’s life since his accident. Something he has taken on with humour and dignity.
If the ILF is removed Jon will be unable to live independently. Being able to engage in what you and I would consider a normal life. He will be unable to travel, have holidays, visit family, visit friends.
The ILF has enabled independence. Given life, where life seemed over.
I would therefore urge you to do all you can to prevent this life enabling function – the ILF – from being eroded’
A fundamental concern for Jon, Ashley and others is whether they will be able to employ their specialist staff in the future. North Lincolnshire Council’s responded to this question on 9th June 2014:
‘We appreciate this situation may cause you concern as an existing Independent Living Fund customer and would wish to reduce any worry or anxiety you may have.
Allocation of future monies will be based on your updated assessment and support plan and on future Local Authority funding so at this stage we cannot give any specific guidance on the amount of monies that you may receive from us or cannot give guarantees on the future employment status of any Personal Assistants you may currently employ.’
As you can imagine such ‘reassurance’ only serves to heighten anxieties and build mistrust!
So I return to my central question – will the government guarantee that Ashley Jon and all those currently in receipt of ILF will not lose their independence as a result of their decision to close it. A decision I believe is aimed at saving money but might end up costing more in other budget areas such as health. A better way forward would be for government to engage with ILF recipients learn from their experience and find ways of shaping future services that are cost effective but continue to deliver true independence.
As Disabled People Against Cuts points out for the 17,500 people in receipt of ILF ‘the closure of the Fund will have a devastating impact on the lives on these individuals and their families. It also has a much wider significance because at the heart of this is the fundamental question of disabled people’s place in society: do we want a society that keeps its disabled citizens out of sight, prisoners in their own homes or locked away in institutions, surviving not living or do we want a society that enables disabled people to participate, contribute and enjoy the opportunities, choice and control that non-disabled people take for granted?’
Or in Mahatma Ghandi’s words “A nation’s greatness is measured by how it treats its weakest members.”
People like Jon and Ashley are not weak but strong. The ILF gives them independence and liberates their strengths. Now is the opportunity for the Minister to guarantee their future independence will not be compromised by the closure of the ILF.
DPAC is delighted to extend an open invitation to celebrate Independent Living Day with us on the 4th of July at the ‘Independent Living Tea Party ‘.
The party will begin at 2pm at the DWP, Caxton House in Tothill Street SW1. There will be fun & games, and entertainment; and of course, some civil disobedience.
We have come a long way since the demand for Independent Living was first made nearly 50 years ago. Then, as now, IL was our solution for how society supports disabled people to take our place as equals. For how society addresses inaccessible institutions, structures and process it created, which do more to disable people than their impairments ever could.
There are many strands of Independent Living, and all are under threat. Cuts to:
Support funding – such Social Care, the ILF & Disabled Students Allowance;
Education – in areas like the wholesale destruction of SEN Statements and the continued segregation of disabled children into ‘special’ schools;
Transport – the withdrawal of Taxi-cards, freedom passes and the halting of planned works to make infrastructure more accessible, amongst a host of other cuts combine to make disabled people second-class citizens in society.
But we have fought this fight before – and won. Our Disabled Peoples Organisations, legal gains and the policy victories we have won previously are testament to the power, know how and skills disabled people have to develop solutions to problems created by society. We must celebrate these achievements and remind ourselves that each of these successes have had to be earned, no-one ever gave them to us without a struggle.
So celebrate with us, or alternatively create your own party. Get together with friends and supporters, and create the kind of vibrant, positive spaces we have always created. Bring the noise – bells, whistles, drums, pots & pans etc. Bring food to share. Bring your enthusiasm.
if you are planning your own party, here are some suggestions:
1) Choose your target –
focus on the important issues locally; support, education, transport etc – its up to you. Identify what you want to celebrate and who represents the biggest threat to that locally. Is it your local council or Uni? Is it a transport provider? Or is it someone else?
2) Tell everyone –
yes, EVERYONE. Media, campaign networks, activists, local people. DONT FORGET TO TELL DPAC so we can list and support your action!
3) Be heard, be seen –
make your event loud and proud. Bring music, choirs, drum, bells, whistles. Remind everyone out there that we won‘t be separated from society, we are society. We won ‘t go quietly.
4) We’re also holding a Twitter Party on the Hashtag
#IL4JULY so that people at the DWP and at other events round the country
can tweet in pictures of their events and we can all join in. Further
details to follow, watch this space.
The famous Boston teaparty led to a revolution against the British government let’s see where our teaparty leads…..
Disabled people have long been oppressed by professionals saying they’re acting in our ‘best interests’ as an excuse to maintain their own interests. One of the latest is their ‘take’ on facilitated communication, used by many across the world to express their voice if they do not have speech. FC is the use of a keyboard on which the user types what they want to say see the great piece written by the brilliant Quiet Riot
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”
Some claim FC is incorrect and shouldn’t be used. DPAC fundamentally disagrees and fully supports FC. But, of course keeping people voiceless is much more profitable for ‘professionals’, charities and other groups whose livelihoods and/or donations often depend on our oppression and on keeping us powerless and silent. This has been evident throughout disabled peoples’ history.
Imagine the loss of contracts, work they get to psycho – analyse us. The lesser need for speech therapists, researchers, psychologists, service providers and academics,and the drop in donations to pay top salaries to their charity directors if we develop our own challenging voices-of course its in their interests to deny any method that empowers our voice if it renders them obsolete!
All those denying our voices through which ever means we chose to express them are violating our human rights as set out in the United Nations Convention on the Rights of Disabled Persons (UNCRPD) which argues we have a right to use any method we chose for communication including FC and that this should be respected and accepted. But in the so called disability business (i.e those who make money from us and from maintaining our oppression) profit speaks louder than human rights.
Please see below to find out how this can happen when the vested interests of ‘professional power attempts to overturn human rights…….
The ISAAC attack on the Communication used by Increasing numbers of Disabled People.
The International Society of Augmentative and Alternative Communication (ISAAC) released a “Position Statement” on facilitated communication (FC) on 23rd April 2014 to its international membership.
Along with theposition statement on FC, ISAAC finally issued the identities of the ad hoc committee, who were selected to deliver the statement. The majority of the committee had publicly condemned FC prior to joining the committee. Therefore, the condemnation of FC following their deliberations was the expected outcome.
The ISAAC ad hoc committee used flawed methodologies, collected biased data to support an unexplained hypothesis and cited highly selective references to create a spurious position statement on FC.
However, most significantly the committee refused to consult with disabled people who use FC. ISAAC had identified just one disabled person who was a member of this committee but this person did not use FC.
The remainder of the committee were Speech Therapists, Researchers, Psychologists, and Academics. There was no representation of people using the communication they were writing a “position statement” on. Such oppressive practice has no place in an organisation established supposedly to support a persons right to communication.
Rosemary Crossley (the founder of FC) alongside many disabled people using FC, had made many, well received presentations to large audiences at ISAAC events. Now following the work of the ad hoc committee FC, as a method of communication for increasing numbers of disabled people, has been dismissed as invalid.
This outcome appears to have been contrived to protect the power of professionals and academics whilst ignoring the rights of communication for disabled people using FC .
ISAAC have not established committees to create position statements on other alternative means of communication accepted within ISAAC ; Picture Exchange Communication System.(PECS), Rapid Prompt Method (RPM). This is another indication of the deliberate attempt to isolate and devalue FC by a group of professionals and academics whose status and “expertise” is seriously challenged by the authentic voice of disabled people.
Such an approach by ISAAC management requires the subjugation and acquiescence of disabled people and is an abuse of professional power.
This abuse of power and from professionals is being seriously challenged by large numbers of disabled people and their allies. Similar resistance to protect academic vested interests was used to stop the introduction of sign language and Braille and it took major struggle from Deaf and Blind people with their allies to overcome such oppressive practice.
ISAAC and it’s associated chapters state that:
“The International Society for Augmentative and Alternative Communication (ISAAC) works to improve the lives of children and adults who use AAC. (Augmentative and Alternative Communication). ISAAC’s vision is that AAC will be ! recognized, valued and used throughout the world. ISAAC’s mission is to promote the best possible communication for people with complex communication needs.”
By dismissing a valued means of communication ISAAC management are devaluing hundreds of their members and in doing so fundamentally undermine the ISAAC mission statement.
This position statement has given a licence to “hate speech” about FC which cannot go unchallenged. The ISAAC committee have excluded a section of their own membership because they use FC. I invite members of ISAAC to demonstrate their protest at such an abuse of power and an abuse of thousands of disabled people around the world.
“The only thing necessary for the triumph of evil is for good men (and women) to do nothing” Edmund Burke.
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.
Bring things to make lots of noise. We have asked Mike Penning Minister for disabled people to join us but in case he doesn’t we need to make sure he knows we’re there.
Dear Mike Penning,
We understand that you have stated publicly that you feel closure of the Independent Living Fund (ILF) will not have any adverse effect on the ability of disabled people to live independently in the community, to be able to access education or to continue to be employed.
Disabled people who are ILF recipients do not agree with your view and are gathering to voice their fears for their futures on May 12th from 3-5pm outside Caxton House.
They would very much appreciate the opportunity to speak to you about their very valid concerns so although we know you must be a very busy person we hope you can join us to hear what disabled people are saying.
In the meantime we are attaching a small selection of case studies for your attention.
On behalf of DPAC ILF recipient support group
————————————————————————————————————————————- What is the Independent Living Fund?
The Independent Living Fund (ILF) is a ring-fenced pot of funding to provide funding to help 18,000 disabled people with high support needs live an independent life in the community rather than in residential care.
Closure of ILF: In March 2014 government decided to close the ILF in June 2015 in spite of a court ruling that said their previous decision to close ILF was in breach of the Equality Act. As usual DWP blatantly ignored the court.
Recommendations: Deaf and disabled people’s organisations and disabled people believe the ILF should be kept open and re-opened to new applicants for two key reasons:
– The ILF is a cost effective model of funding that successfully supports the independent living of those with the highest support needs.
– In stark contrast many Local Authorities only provide funding for basic a clean and feed model of care which ends independent living and inclusion in the community. This will leave many ILF users with a choice between inadequate care at home or an inactive, isolated life in a residential home.
“I got up this morning, brushed my teeth, showered, ate breakfast, got dressed, checked my e mails, went to work, had lunch with colleagues, met with friends on the way home from work, popped in on my mum to see she was alright before coming home to do a couple of hours work on my open university degree before bed. I was able to do all this because of the money from the Independent Living Fund that helps pay my Personal Assistant to support me to do the things I can’t manage to do directly because I have a condition that means my hands do not work and I get around using a wheelchair” – ILF recipient.
The money from the independent living fund helps pay for a personal assistant, and enables disabled people who need support to have a quality of life to do the same things everyone else can do. Live.
The government says “ILF recipients will be reassessed by their local authority, and will be funded by the local authority” The money given to the local authority to meet a disabled person’s support needs will not be ring fenced. The local authority can spend that money meant for disabled people and their support needs on other resources. Disabled people who need the support fear less or no support at all and then being placed into residential care, far from friends and family.
Imagine this; your local authority has cut your support needs. You would have to rely on the local pop in service from carers you do not know, to keep you clean, warm up a meal in the microwave, and convenient at the time for the carer but not a convenient time for you. If you need night care, you would then be forced to wear incontinence pads or even worse cathertised.
You would then be only able to shower once a week, have no social life, have to perhaps use a hoist and then excluded from every day activities outside, forced to give up your pet if you had one, no garden, forced into isolation, having to sack the personal assistant you relied on for many years with no redundancy for them.
Now you are thinking you do not want to go on anymore. Its how do I go on like this with little support? Due to the lack of support you are now isolated at home cut off from society and from friends and family and as the lack of support means no independence, no social life, can’t work, no quality of life, it would make anyone feel down, and even depressed. It’s awful to contemplate isn’t it?
Disabled people want rights. Rights to live independently in the community, to have our support needs met, so we can have a quality of life, and do the same things as everyone else does. Live.
Society forgets that we are human beings, people, we are mothers, fathers, brothers, sisters, friends, neighbours, colleagues, but society sees the impairment, not the person we happen to be. We are judged, discriminated against, and called a drain to society. Well, we are not!
People can be born with an impairment, or at some point in their lives can even be struck down with a devastating illness, hit by a car, lose your mobility need to use a wheelchair to get around, have a breakdown, could lose your job and need to claim benefits to live. The social security system was put in place to protect those who needed the support, who may be too ill to work. You need the support every day to carry out the simplest of tasks. Life is unexpected, it’s cruel and its tough, it can change in a flicker of an eye lash, and it can happen to YOU.
Life is really hard living as a disabled person every day. Trying to manage life with all the same worries as non disabled people. Money, keeping a job, family life, health issues, how to get around using public transport. It’s bloody tough.
“The independent living fund gave people with severe impairments the support needed to live life as we chose, so we could work, go shopping, feel part of society, a human being. A non disabled person is not used to thinking about how they would go to the toilet, get in and out of their home, get to work but we need to plan all those things in advance and ensure we have the support to do them.” -ILF recipient.
Our demand is to keep the independent living fund open, open it up to new claimants and open up independent living to all disabled people so we can keep our independence, and with support, have a quality of life and live.
All I ask of you is for your help. Help us save the independent living fund from closing on 30th June 2015. As disabled people, we want rights to live independently as possible, having a quality of life despite what we battle with every day with our disabilities and illnesses.
Why? Because we’re worth it! We are human beings and we want to be treated as such, not the stock the government and great swathes of society think we are. We are worth it! Help us keep the independent living fund open and help us in the fight for our rights so we can have a quality of life living in society as best as we can.
What the Closure of the #ILF means to disabled people -Mary’s story http://campaigndpac.wordpress.com/2013/03/07/what-the-closure-of-the-independent-living-fund-means-to-disabled-people-mars-story-2/ #SaveILF #ILF
What the Closure of the #ILF means to disabled people – Justine’s story http://campaigndpac.wordpress.com/2013/03/07/what-the-closure-of-the-independent-living-fund-means-to-disabled-people-justines-story/ #SaveILF #ILF
What the Closure of the #ILF means to disabled people – John, Paul and Evonne’s story http://campaigndpac.wordpress.com/2013/03/07/what-the-closure-of-the-independent-living-fund-means-to-disabled-people-john-paul-and-evonnes-story/ #SaveILF #ILF
What the Closure of the #ILF means to disabled people – Roxy’s story http://campaigndpac.wordpress.com/2013/03/07/what-the-closure-of-the-independent-living-fund-means-to-disabled-people-oxys-story/ #SaveILF #ILF
What the Closure of the #ILF means to disabled people – Kathy’s story http://campaigndpac.wordpress.com/2013/03/07/what-the-closure-of-the-independent-living-fund-means-to-disabled-people-kathys-story/ #SaveILF #ILF
DPAC would like to thank everyone for making last week’s (April 12 2014) National Conference such a huge success. There was a huge turnout with over 150 disabled activists from all over the UK including many new DPAC members attending, but just as important there were hundreds of members and supporters beyond the venue taking part through social media – watching the video live-stream, tweeting and sharing comments, views and sending messages of support. This was fantastic work by everyone and a truly inspiring collective effort.
Here’s a brief outline of how it went.
The day was timetabled into sections beginning with practical reports and voting on policy motions. This was followed by two workshop sessions and then a closing session for everyone to feedback on the day. Four workshops were available to choose from in each Workshop session. Detailed reports on these will follow later.
John McDonnell MP, a longstanding friend and supporter of DPAC, gave a rousing opening speech to encourage everyone and remind us of the victories achieved so far. He congratulated disabled people and DPAC for fighting back, along with our sister organisation Black Triangle and WoW Petition initiators
As he finished he mentioned his own recent health condition which he said he felt brought him closer to our movement. Ellen reacted quickly by giving him a DPAC t-shirt and declaring him a full DPAC member to instant applause and cheers.
The Finance Report showed a healthy state of affairs for the time being thanks to individual donations, t-shirt and badge sales plus grants from the Edge Fund, the Network for Social Change, Trust for London and the Andrew Wainwright Trust. More fund-raising is necessary going forward.
1. Government Honours
This proposed that any future candidates for the DPAC Steering Group could thwart the network and collective ethos of DPAC if they had received a national honour like an OBE or MBE. The ‘BE’ refers to the imperialist British Empire which is still celebrated despite what we know of the suffering and oppression this caused. The motion conversations also suggested that any media attention would be focused on those with honours and titles, rather than on the collective network ethos that DPAC ascribes to. The motion was put forward as a rejecting of this possibility and that of the honours system more generally. This was defeated.
This motion stated DPAC opposition to discrimination on the grounds of gender, sexuality, age, faith, disability, ethnicity or status. It also empowered the Steering Group to terminate the membership of anyone who supported a party which holds discriminatory policies, like UKIP. This motion passed based on an appeals process being put in place
3. Steering Group Size
This motion sought to expand the Steering Group from 8 members to 12 in order to respond to increased activity and maintain a broad, diverse and inclusive profile. This was passed.
There were 11 nominees for the Steering Group. Conference took a vote on whether to vote for accepting all 11 nominees, or vote for them one by one. Conference voted to accept all 11 nominees. The new steering group are currently reviewing co-opted places and will get back to the additional people that applied past the deadline as soon as possible
It was highlighted that the working groups are important in taking DPAC forward. The co-chair said she hoped those who did not stand for the Steering Group but were still interested in getting involved would join these as soon as possible.
Finally, a big thank you to the Conference Organising group and Workshop leaders who worked so hard to make this wonderful event a reality.
Links to videos from the day are here with thanks to Occupy for live streaming on the day to make the conference inclusive to all are here
Links to pictures can be found on DPAC flicker here
Thanks to Pete Riches, Szucs Gabriella and Rob Peters
The powerpoint on highlights of the last year can be found DPAC Report
A link to 2013 and some of the things DPAC did is here
See you on the streets!
Also find us on Facebook with a group and open page under ‘Disabled People against Cuts’
We read with interest the piece in the Independent by Rachel Reeves and Kate Green regarding Labour’s response to the Work Capability Assessment 
Labour should realise that disabled people are deeply distrustful of any Labour reform of a Work Capability Assessment system, which Labour introduced in the Welfare Act of 2007 with the stated aim of removing 1 million claimants from the benefit system .
Our position has been and will be that the Work Capability Assessment is deeply flawed in its basic concept, not just in terms of the details of its delivery, and inclusion in the workplace for disabled people cannot simply be achieved by a ‘back to work’ test.
In the Reclaiming Our Futures, Disabled People’s Manifesto , we state that a priority demand from government is that:
A comprehensive and strategic plan of action is developed with disabled people and our organisations to tackle the discrimination and exclusion disabled people face in work and employment including: increasing quality and range of personalised support available to disabled people, strengthening disabled employees rights and tackling employer discrimination and poor practice
Other key demands include that:
Economic productivity must not be the only measure of people’s worth and value, volunteering offers as much value to society as paid employment. While we recognise that volunteering can offer additional skills, it should not be the default option for disabled people because of our exclusion from paid work
There must be policy and media recognition that there will always be disabled people who are unable or too ill to work. These individuals must be supported by a publically funded system. They should not be penalised or demonised as they are currently.
For true inclusion in the workplace for disabled people a wider approach is necessary including but not limited to:
• Will Labour commit to the restoration of Disabled Student’s Allowance,
• Will Labour commit to the restoration of the Independent Living Fund,
• Will Labour commit to the extension of Access to Work (AtW) to include unpaid voluntary positions,
• Will Labour commit to the reversal of the reduction of people who currently receive DLA, but will not receive PIP and also lose their Motability access,
• Will Labour commit to the reinstatement of the requirement for councils to produce equality schemes on employment and access
• Will Labour commit to the provision of accessible transport.
• Will Labour commit to the reinstatement of “day one” protection from unfair dismissal in employment law
• Will Labour commit to the provision of Employment Tribunals enforcing mandatory organisation-wide measures on preventing disability discrimination
• Will Labour commit to the provision that all government contracts, at a national, regional and local level, are only awarded to companies that are fulfilling measurable equality targets for the employment of disabled people
(for further points see reference 2)
These currently are some of the barriers to inclusion in the workplace for disabled people, and they will not be fixed by simply amending the WCA. The issue must be seen within the context of the wider interconnected system of barriers in place. It must be seen in terms of what a large majority of disabled people have already identified as key problems.
In terms of inclusion we also need from Labour, a recognition that for many disabled people to be able to work there has to be a nationally transportable social care system with a guarantee that people would keep the same levels of funding wherever they needed to move to work.
We need recognition that there is an onus on government and employers to fully accept the spirit of the Equality Act 2010  with its requirement to the opening of work opportunity to disabled people. Without this, no “fit for work test” aimed at cutting disability benefits will make any impact whatsoever on the numbers of disabled people who can attain and sustain employment.
We also need from Labour a stronger recognition that there are many disabled people who cannot enter the work place and should not have to live in fear of being pressured into doing so.
There is much that the article leaves out and that leaves us with a number of serious concerns and questions.
While we are not yet prepared to endorse in any way Labour’s new approach to the Work Capability Assessment, we do see the article by Rachel Reeves and Kate Green as a helpful starting point for discussions on the future of inclusion of disabled people, who want and are able to work, in the workplace and we would welcome an opportunity to meet with them and discuss this further. We would like meet with Kate Green and Rachel Reeves to ask the following questions:
1. Will Labour commit to stop spending public money on private
contractors and return any assessments of disabled people back to GPs
with medical evidence taken into account as well as give a commitment to
look at the barriers to work for disabled people who can and want to
work (in line with the social model of disability)?
2. Will Labour commit to a time and date to talk with DPAC, My Legal,
the Mental Health Resistance Network, Black Triangle, Deaf activists,
those with learning difficulties ( with an outreach of ½ a million
disabled people) to listen to the views of the largest network of grass
roots disabled people on the WCA and ESA?
3. If Labour are committed to scrapping the WCA when will Deaf and
disabled people, and those with mental health issues have sight of the
detail of any alternative Labour is proposing?
4. If Labour accepts the harm, devastation and premature deaths that have
been an outcome of the WCA why have they chosen to suspend their
prospective parliamentary candidate for St Austell and Newquay, Deborah
Hopkins for speaking out in public about the harm caused by the WCA.
5. Will Labour address the disproportionate harm that the WCA and
sanctions on ESA and JSA are causing to all disabled people, in
particular those with mental health issues and learning difficulties?
6. We along with many others insisted that a centralised Independent Living Fund
for Scotland be established and it has been done. They have also promised to re-open ILF to new users, with a commitment of additional funds and recognition of its importance to independent living and obligations to article 19 of the UN Convention on the Rights of Persons with Disabilities. Why has the Labour
Party not promised to re-establish it south of the border?
Many of the Statements included in this response are taken from the UK Disabled Peoples’ Reclaiming our Futures Manifesto and are endorsed by a UK network of disabled people and Deaf and Disabled Peoples Organisations, including: ALLFIE, Inclusion London, Equal Lives, DPAC, Inclusion Scotland, Disability Wales and the TUC Disabled Workers Committee , who between them reach several million disabled voters. References
1. How Labour would reform the Work Capability Assessment http://www.independent.co.uk/voices/comment/how-labour-would-reform-the-work-capability-assessment-9265479.html
2. The Reclaiming Our Futures, Disabled People’s Manifesto http://disability-studies.leeds.ac.uk/files/library/UK-Disabled-People-s-Manifesto-Reclaiming-Our-Futures.pdf
3. The Green Paper: The new deal for welfare: Empowering people to work. 2006 http://webarchive.nationalarchives.gov.uk/+/http://dwp.gov.uk/docs/a-new-deal-for-welfare-empowering-people-to-work-full-document.pdf
4. Equality Act 2010 http://www.legislation.gov.uk/ukpga/2010/15/contents
DPAC Press Release: Top Corrie stars Support Save ILF Campaign
For immediate release: 16 April 2014
Coronation Street stars support the ‘Save the Independent Living Fund’ Postcard Campaign.
Stars of Britain’s longest running soap joined disabled people in their campaign to Save the ILF(1). The fund which provides support funding to almost 20 000 disabled people is to close in June next year the Government announced last month(2). See Facebook campaign page
Stars such as Bev Callard, who plays Liz McDonald, former Red Dwarf actor Craig Charles who plays Lloyd Mullaney and Jack P Shepard who plays David Platt ans several other stars posed with oversized postcards produced by campaign organisers who include DPAC(3) (Disabled People Against Cuts), GMCDP (4)(Greater Manchester Coalition of Disabled People), Inlusion London(5), Equal Lives(6) and others.
Despite having their original decision to close the fund over-turned at the Court of Appeal late last year(7), the Government has re-announced the closure following a new Equalities Analysis(8) – where officials admit levels of support cannot be maintained and some users may end up having to move into Residential Homes to have their support needs met. Funding will be devolved to Local Authorities for 1 year until 2016(9), but not ring fenced, meaning there is no guarantee the money will be spent providing support for users, or indeed any disability services at all.
DPAC member Paddy Murphy said ‘At an annual cost of just over £350m, this isn’t a hugely expensive fund to run. Users receive an average of just £337 a week to maintain their independence. The Government have admitted some will be forced to move into Residential homes, and others won’t get the level of support they receive now – some none at all. Local Authorities are seeing their budgets decimated, and their largest expenditure is on Adult Social Care, they simply won’t be able to afford to meet people’s needs. Disabled People will once again be forced to pay the highest price to fund the bailouts and rescue plans for the banks, which is the underlying justification for the cuts to public services.’
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
We’ve had a great response to bookings for the DPAC conference on Sat 12th April in London, but places are now running out. Please email:firstname.lastname@example.org
with your details, number of places needed and any access needs.
12th April 2014 – 11am until 5pm
London Met University, Tower Building, 166 – 220 Holloway Road, London, N7 8DP
Since we started in October 2010 Disabled People Against Cuts has been at the forefront of the fight against austerity. With Atos on the run, and the bedroom tax on the ropes we are seeing the results of hard campaigning. But there is much more to do to ensure disabled people’s rights to live independently and with an adequate income.
The national conference is a chance for DPAC members to come together, to share experiences and discuss your ideas for moving forwards.
DPAC are working hard to bring to conference a surprise guest, a person who, if anyone has, has been the catalyst for the re-emergence of disability activism in the last few years, someone DPAC has enjoyed a close relationship with from visiting him at home to donating underpants to supporting his select committee appearances.
Workshops will look at: – Where Now for the Independent Living Fund campaign, – Developing a Social Model of Distress, – Winning the Argument, – Disability, Art and Protest, – Building a National Network of Disabled People’s Organisations and Direct Action practical skills among others.
Please note places are limited so priority will be given to DPAC members. For information about joining please contact email@example.com
The venue is wheelchair accessible. BSL and a note taker will be provided. For access information go to: http://www.disabledgo.com/access-guide/islington-council/london-metropolitan-university-tower-building
For access queries including booking parking please contact DPACfightback@yahoo.co.uk
To book places or for more information please contact DPACfightback@yahoo.co.uk