Will social care go back into the NHS?

Jul 282020

With credible media reports this week that the government is considering taking social care back into the NHS, it is worth knowing that disabled people in the 1960s campaigned for social care to leave the NHS and to become a duty of local government, not least because it would become more accountable.

This could be our era’s defining moment for defending the social model against the medical model.

The two documents below provide background research and extensive details on the campaigns for independent living in the 60s and 70s. Please fee free to circulate them, they are both Creative Commons for that purpose.

Tony Baldwinson

Alf Morris MP and the campaigning by disabled people that led to the 1970 CSDP Act – research notes

2020-06-11 Alf Morris MP and the campaigning by disabled people … (Final 2)

To and From Grove Road: Independent living, disabled people, social care, activists fighting segregation and abuse by Maggie Davis (Hines) and Ken Davis

2019 To and From Grove Road – Maggie Davis (Hines) Ken Davis – ISBN 9781913148089

Conference notes & films – DPAC Independent Living Campaign Conference Nov 2017

Independent Living, Independent Living Fund ILF No Responses »

Mar 132018

In November 2017 Disabled People Against Cuts and Disabled People’s Organisations involved in the Reclaiming Our Futures Alliance held a national Independent Living Campaign conference. The aim of the day was to take stock of the key barriers to independent living that Disabled people who use adult social care services face and assess how far the situation has deteriorated in the last year but also to explore a shared vision for an independent living support system that can truly uphold our rights.

Below you can find notes and films from the day as well as copies of hand-outs and presentations.

Notes from the conference: Independent living campaign conference notes Nov 2017

Opening plenary:

Workshop on assessments and reviews:

Reading by Penny Pepper’s:

Workshop on campaigning for rights to independent living:

Closing session:

Presentation slides:
• Opening session – Ellen Clifford presentation: Slides – introduction , Mark Harrison presentation: IL Campaign Conf 25 Nov 2017 (1)
• Campaigning for the rights to independent living (2)
• Charging and Financial Assessment (1)
• Co-operative alternatives for personal assistance

Papers disseminated at the conference:
• NHS Continuing Healthcare Cost-Caps – Where we are with Warehousing – Fleur Perry warehousing update
• Social Care is Broken Beyond Repair – So what should replace it? – Peter Beresford and Mark Harrison examine the problems and potential solutions Harrison and Beresford LB final
• The need to campaign against institutionalisation – Simone Aspis Simone blog

UN disability committee General Comment on Article 19: General Comment on Article19
Inclusion London Briefing on General Comment on Article 19: Briefing on General Comment on Article 19

#ILF Closing Ceremony 30th June 2015

ILF, Independent Living, Independent Living Fund ILF 4 Responses »

Jun 302015

With thanks to Kate B Published on Jun 30, 2015

TRANSCRIPT

00.00 – 00.19

Today is a very, very sad and tragic day and I think some of us are starting to cry up the front here, because this has been a long campaign and it has been so important to so many people because it means so much, but this isn’t the end and I think what last Wednesday showed is that disabled people are strong when we unite with our allies, we fight back and we give them hell.

00.20

Save the ILF!

00.32

Whoa boy, Whoa.
I come in peace with my horse to save the ILF. We are fighting for independent living for disabled people in the UK in 2015. Can you believe that?

No.

We have had enough. The Independent Living Fund closes tomorrow and we are not going away. We are going to fight on.

1.05

The ILF has given me freedom. It has given me indpendence, to live my life the way I choose without being reliant on friends or family. Without being stuck to a regimented regime of getting up in the morning when it suits other people, to go to bed at 9 o’clock, I was 22 and I had to go to bed at nine o’clock, can you imagine. I was told when I could go to the toilet, once a day at one o’clock, if I wasn’t there on time then tough, I’d have to wait until a later call that evening. It’s just not just me, it’s thousands of people out there who are subjected to this.

1.39

This is from Leanne. Hi all, I wish I could be with you all today but unfortunately, I can’t but please know that I am with you all in spirit, this is not the end, it is just the beginning.

1.54

SINGING

2.07

There used to be a time when governments, particularly when the ILF came in when they were able to at least talk about independent living with a straight face and now when they do it’s very much with a forked tongue. When the ILF closes today, it is more than just the closure of a fund. I think it signifies very much the end of an idea and that idea was that society was very much prepared to meet its responsibilities to make sure that equality of opportunity was something more than words. And we took tangible steps like the Independent Living Fund which got people real lives beyond looking out the window and watching the world pass them by.

Category
- News & Politics
License
- Standard YouTube License

Second Court Case on #saveilf : 22nd&23rd October Join the #DPAC Vigil

Action, All Posts, ILF, Independent Living, Independent Living Fund ILF, legal challenges, UNCRPD, welfare cuts 1 Response »

Aug 192014

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 22^nd and 23^rd of October. It is expected to last one and half days.

There will be a vigil outside the courts from 12.30 on the 22^nd 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.

https://www.dpac.uk.net/2013/02/a-nasty-cut-people-affected-by-the-closure-of-the-independent-l5142/

https://www.youtube.com/watch?v=OMElPk0pq6I

We will be posting further updates

Disability Rights UK: Independent Living or new visions in neo-liberalism?

Action, All Posts, Disability Activism, Disability History, Disability Rights, DPAC Reclaiming Our Futures Action, Inclusive Education, Independent Living, Independent Living Fund ILF, local authority cuts, Social Model 2 Responses »

Jul 172014

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’[1]. 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[2] ( 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[3]), 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[4]. 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[5] 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[6] 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[7].

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[8], 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[9], 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[10].

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,’[11] 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 16^th July) mentioning a very good Guardian piece by independent living activist John Evans[12], 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.

follow @dis_ppl_protest for more

If you want to email DRUK you can do so by emailing: liz.sayce@disabilityrightsuk.org

[1] https://disabilityrightsuk.blogspot.co.uk/2014/07/we-need-new-vision-for-independent.html

[2] https://disabilityrightsuk.blogspot.co.uk/2014/07/we-need-new-vision-for-independent.html

[3] https://davidg-flatout.blogspot.co.uk/2014/07/inclusion-forgotten-ambition-lost-i.html?spref=tw

[4] https://www.craegmoor.co.uk/library/files/Craegmoor%20Locations%20&%20Services%20Brochure(1).pdf

[5] https://www.craegmoor.co.uk/library/files/Craegmoor%20Locations%20&%20Services%20Brochure(1).pdf

[6] https://www.bbc.co.uk/news/uk-24581693

[7] https://beastrabban.wordpress.com/2013/07/20/private-eye-on-failure-of-care-at-more-care-hospitals-owned-by-american-private-equity-firms/

[8] https://www.dailymail.co.uk/news/article-2227229/Nurses-quizzed-police-abusing-patient-Priory-Hospital-concerned-family-hid-secret-camera-room.html

[9] https://www.expressandstar.com/news/2010/01/15/elderly-will-no-longer-be-sent-to-care-home/

[10] https://www.runcornandwidnesweeklynews.co.uk/news/health/failed-priory-mental-hospital-widnes-5875608

[11] https://www.managementtoday.co.uk/news/432103/Man-Priory/?DCMP=ILC-SEARCH

[12] https://www.theguardian.com/society/2014/jul/16/independent-living-fund-closure-disabled-people-residential-care

Ask local council candidates pledge support for ALLFIE’s Manifesto

Action, All Posts, Inclusive Education, Independent Living, local groups, media, News, Reclaiming our Futures, write to your local councillor 4 Responses »

May 162014

We are asking all local council candidates to pledge their support for developing inclusive education practice if elected onto the council.

For DPAC members not standing, we want your local council candidates to pledge their support for inclusive education practice.

We would like to have a photo of candidate with his or her party rosette, name, borough and ward and a sentence or two on why she or he is supporting ALLFIE’s manifesto demands.

We would like to aim for every candidate to offer his or her support for inclusion.

Please follow link: https://www.allfie.org.uk/pages/work/manifesto.html

Send photos to simone.aspis@allfie.org.uk

Quiet Riot: A voice that will be heard, a voice to be reckoned with!

Action, All Posts, DPAC Reclaiming Our Futures Action, European Network on Independent Living (ENIL), Events, Inclusive Education, Independent Living, international, News, Social Model 9 Responses »

May 042014

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.
They are:

Paul-Thomas Allen
Judathan Allen
Raphael Allen
Danian Allen (1984-2005)
Heathar Barrett
Nadia Clark
Gareth Donnellon
Thiandi Grooff
Josh Harris
Anthony Kletzander
Maresa MacKeith
Dan Stanton
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:

,https://www.candleaac.com/staff.htm

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.
https://www.annemcdonaldcentre.org.au
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..”

Raphael Allen
” 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”

Anthony Kletzander.

“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.”

Heathar Barrett

https://www.heatharashley.co.uk/Home.html
“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”

Josh Harris.
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.

Blake Williamson
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”

Paul-Thomas Allen.
” 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.”

Judathan Allen
” 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 ”

https://www.contactcandle.co.uk/about_dan_stanton.htm
Dan Stanton
“(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”

Gareth Donnellon.

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 :

Segregated Education

“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”

Judathan Allen.
“Special school you think is bad. It is the nondescript way they teach is dull. They only had lots of detritus to share.”

Paul-Thomas Allen.
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.”

Heathar Barrett
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”

Raphael Allen
“Being alone I feel Dead”

Heathar Barrett
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 ”

Josh Harris.
https://www.communitycare.co.uk/2008/01/16/josh-harris-autism-and-the-ambition-to-become-a-rabbi/#

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.

Heathar Barrett.

My School
By

Maresa MacKeith
“Taking The Time”
www.inclusive-solutions.com

Introduction

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.

Maresa MacKeith

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”

Anthony Kletzander
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”

Heathar Barrett-
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”

Anthony Kletzander.
“People inspire me all the time. It’s the easy things I envy like people who are pain free”

Josh Harris

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

Blake Williamson.
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.

https://www.dropbox.com/s/oxh98ewgf54qthq/MVI_0121.MOV

Anthony Kletzander. Typing with Marion Stanton just half hour after meeting with her. Nua Health Care refused her offer of support.
Fear

A poem
by
Maresa MacKeith

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.

https://www.centreforwelfarereform.org/who-we-are/fellows/nadia-clarke.html

Nadia Clarke
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.”
Thiandi Grooff
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.

This piece has been put together for the European Independent Living Day May 5th created by ENIL to celebrate independent living and to highlight the impact of cuts on independent living- we want to add that those who reject FCT also reject independent living –please add your support

For donations and support for Quiet Riot, FCT or any of the issues mentioned in this piece please contact: whittakerjoe5@gmail.com

For those fighting for inclusive education please contact the Alliance for Inclusive Education (ALLFIE) https://www.allfie.org.uk/

Apr 072014

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 mail@dpac.uk.net or @dis_ppl_protest.These will be put up on the graffiti wall at the conference and included in the notes from the day.
Watch the conference live on:

https://bambuser.com/channel/OccupyLondon and https://bambuser.com/channel/DPAC

Live tweet your questions and contributions to @dis_ppl_protest

Or email: mail@dpac.uk.net

The program for the day is at DPAC Conference 2014 Saturday 12th April – Conference Programme

Support the ‘European Independent Living Day’ in May 2014

Action, All Posts, Europe, European Network on Independent Living (ENIL), Independent Living, Independent Living Fund ILF, News, Reclaiming our Futures, Social Model, welfare cuts 3 Responses »

Apr 052014

Defend Independent Living Rights

Stop the Closure of the Independent Living Fund

Stop Disability Cuts

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

Alma Lunt

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

Anita Bellows

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 Kelly

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

Dessie Allen, brother of ILF user

Dolores Hannigan, ILF user

Ellen Clifford, Disabled People Against Cuts

Emma Dakin, ILF user

Fred Bayliss, father of ILF user

Gabriel Pepper, ILF user

Helen Brown, personal assistant

Ian Atkinson, Gateshead Access Panel

Ian Kenny, ILF user

Jacqui Armston, personal assistant

James Corker, carer of ILF user

Jan Turner, Project Manager of ‘Being the Boss’

Jean Allen, mother of ILF user

Jean Glaves, ILF user

Jenny Hurst, ILF user

Joe Whittaker

John Aspinall, ILF user

John Buckley, parent of an ILF user

John Gilliland, father of ILF user

John Kelly, ILF user

Juliet Marlow, ILF user since 1991

Kieran Coffey, ILF user

Kieran McCarthy M.L.A. Strangford (Northern Ireland)

Kieran Walawalkar, ILF user

Kristine Cope

Laura McCrum, ILF user

Lianne Bayliss, ILF user

Linda Burnip, parent of an ILF user and co-founder of Disabled People Against Cuts

Lise Marron, ILF user

Mandy Dexter, personal assistant

Margaret Coffey, mother and carer of ILF user

Maria Nash, ILF user

Marie Thompson, sister of ILF user

Mark Williams, ILF user

Michael Bayliss, brother of ILF user

Michelle Allen, personal assistant

Mick Hutchins, ILF user

Neil Bayliss, brother of ILF user

Niqi Rainey, sister-in-law and carer of an ILF user

Paul Taylforth, step-father and carer of ILF user

Paula Peters, Disabled People Against Cuts

Peter Coffey, father and carer of ILF user

Peter Steele

Philomena McCrory, Centre for Independent Living Northern Ireland

Rahel Geffen – CEO Disability Action in Islington

Richard Parker, ILF user since 1991

Rob Punton, ILF user, Community Navigator Services and Disabled People Against Cuts

Robert Allen, ILF user

Ronnie Allen, brother of ILF user

Rosemary Kelly, ILF user

Rosemary O’Neill, CarerWatch

Roxanne Homayoun, ILF user

Sam Whalley

Sean O’Hare, ILF user

Sophie Partridge, ILF user

Stuart Bracking, ILF user

Sue Lovett, English Campaign for a Fair Society

Surojit Walawalkar, parent of an ILF user

Theresa Murphy, family of an ILF user

Tracey Lazard, Chief Executive of Inclusion London

Ursula Corker MBE, carer of ILF user

Valerie McCarthy, sister and carer of an ILF user

Vin West, parent and carer

Wendy Mortimer, personal assistant

Defend right to Independent Living : Norwich17th Feb 2014

Action, All Posts, council cuts, Independent Living, local authority cuts, local groups No Responses »

Feb 092014

Monday morning at County Hall against the £190m cut imposed by the Coalition Government on Norfolk. The proposed cuts to social care will devastate disabled and older people’s lives and leave many ‘prisoners in their own homes’. No return to institutionalisation! Defend our right to independent living!

Protest Against the Cuts to Adult Social Care and Children’s Services

Monday 17 February

County Hall,

Norwich

Protest from 8.00am

Lobby from 9am

Assemble outside County Hall and bring your banners!

Update-Anthony Kletzander Needs Your Help

Action, All Posts, Independent Living 5 Responses »

Dec 162013

With many thanks for all your great support……

On Friday 20th December 2013 Anthony was moved with his families agreement, by HSE, to a temporary accommodation. We will update you in due course as to how this accommodation works out. Anthony’s parents and sister visited Anthony in his new accommodation and Anthony typed “I am delighted to be out of that place”

Anthony’s Case Conference.

The farcical case conference, about Anthony Kletzander, at Redwood Institution ( run by the Talbot Group a private residential care company ) in Stamullin, Ireland on the 18th December 2013 really did have to be experienced to be believed.

In relation to Anthony Redwood’s practice is opaque and communication jargonised amongst consenting professionals. This is discreetly managed behind, closed doors!

I accompanied Anthony’s mother and sister for Anthony’s Case Conference, there had been no formal agenda nor any indication of professionals to be in attendance, prior to the meeting. We asked for Anthony to join us.

“We can’t have Anthony at the meeting because it is a professional meeting” firmly stated Ann Jackson, psychiatrist with Redwood,

“Anthony, is not invited to this meeting” said The Disabilities Manager, Geraldine Murphy from HSE, she continued ” Anthony can come in and hear what judgements have been made later”

We stated that we would not meet without Anthony presence and his participation.

Ann Jackson, said;

“Anthony would be overwhelmed by such a large gathering” We suggested, they should ask Anthony directly.

“Absolutely, not!” one of the growing number of professional suggested “these are clinical recommendations”.

We repeated we will not be attending any meeting without Anthony. With no sense of irony the Psychiatrist Ann Jackson exclaimed!

“We are a person centred organisation”

The Director of Redwood tried to usher us into the conference room, we repeated;

“Nothing about Anthony without Anthony”

If Professionals gather like a pack! Then if you critically question their status, and power by refusing to concede their dictates you are accused of ” bullying” “being aggressive” ” being intimidating”, “raising your voice” “finger pointing” individuals – this was the chorus from Redwood professionals. Psychiatrists, Psychologists, therapists, Managers and Directors all gathered around the three of us.

It is amusing that I was labelled as intimidating, because we refused to follow their instructions, when their offensive message, to a mother, that her son, was not allowed into his case conference was presented as reasonable.

One psychologist Ronan Gibney, then suggested Anthony be allowed into the meeting on just one condition: Anthony would

“not be allowed to use his communication light writer”

Ronan Gibney, said “his team” decided Anthony’s communication was not “credible”. I asked what evidence he had for making this judgement, since he had not observed Anthony type. He was unable to give a credible response.

There were about 15 professionals at the case conference, However, Anthony would not be present or be heard. We were there to listen to their conclusions.

Why would Redwood want to silence Anthony? If, in their words, Anthony’s communication “lacked credibility” It is because Anthony has been very clear and consistent in his communication that :

His dairy and gluten free diet stopped at Redwood.

Risperdal given despite pleas from his parents and the fact that his Family doctor advised of possible adverse reactions. All ignored by Redwood (still no formal explanation or apology from Redwood or HSE about Anthony’s emergency admittance to hospital, two days after Anthony’s parents met Ronan Gibney and following a series of seizures, days after he was given the medication. Anthony was still being given the antipsychotic medication at Rewood) Anthony never had seizures before and the hospital records which the family attained from their family doctor stated that Anthony did not have epilepsy. So what caused the seizures???

No one was prepared to use Anthony’s communication aid at Redwood ,despite it having been accepted, by Dr Corinne Pearson,Clinical Director at Redwood, in a conversation with Anthony and his parents prior to Anthony’s admission to Redwood.

Not surprisingly Redwood professionals are denying the very communication aid from which Anthony could describe in detail his experiences. Therefore, by dismissing Anthony’s voice as “lacking credibility” they continue to disguise their treatment of Anthony.

I stated to Redwood assessment team I was calling the response to Anthony as abusive, they were aghast that anyone could think such a thing let alone name it.

They asked me to leave the premises. I declined their offer. They said they would call the guards (police) I said I would wait. The police arrived, we went into a side room. We detailed events, I made a charge of abuse of Anthony to be formally noted. My allegations were recorded by the police.

Anthony’s mum was told the following day that Anthony would be discharged from Redwood immediately, back to the “care” of HSE, given that Joe Whittaker had made such an outrageous charge of abuse against Redwood.

We have no idea what the Redwood team had concluded in their reports. We know Redwood decision was made before the family arrived without Anthony being able to hear or comment on their judgements. The need for the family to comply in such a meeting would have given legitimacy to this illegitimate denial of Anthony’s rights. This we judged was why Redwood was desperate for the family to give Redwood procedures legitimacy.

How can any report, written by 15 or more professionals, regardless of their competence or academic qualifications, written about another human being, have any credibility if the voice of that human being has been denied during the compiling of that report?

The HSE insisted on and commissioned this spurious and unnecessary assessment of a young man who has been, drugged gagged and disorientated by damaging diet, at Redwood. An assessment that could have been conducted, over a couple of hours with Anthony, using his means of communication, who has consistently stated that he wants his own apartment, his own staff and attend university, as he had done before. HSE imposed this damaging assessment and turned Anthony’s life upside down.

Our immediate objective is to press HSE with Anthony to put in place Anthony’s legitimate wish to live independently.

In the long term it is important to press for a full and independent investigation into the treatment of Anthony at Redwood.

We will be contacting Kathleen Lynch, Minister of State with responsibilities for Disability, Department of Health ( kathleen_lynch@health.gov.ie ) to ask her to initiate an independent investigation. However, when we said to Sheila Marshall from HSE that this would be our next action, she shrugged and said that any representation to the minister would simply come back to HSE. We also have to challenge the implication of such a complacent comment.

Joe Whittaker
21st December 2013

Anthony is a young man of 25 and was living in his own rented apartment in Dublin for almost three years after many years of struggle. Anthony was enjoying the lifestyle he had chosen. This is the life of many young men at 25. However, Anthony has the label of Autism; he does not use speech but communicates very well by typing on his lightwriter. Anthony has made many presentations to groups of disabled people in Ireland and the UK describing his struggle to get his independent life style.

Anthony had his own 24/7 paid personal assistants, funded by HSE (National Health Service of Ireland) Anthony was very active and very healthy, his parents had supported him all his life, they worked extremely hard with committed professionals from around the world to ensure he had an appropriate, well balanced gluten and dairy free diet with plenty of exercise, regular running along the beach near Dublin and physical activity in the local Gym. In addition, for a number of semesters, Anthony was attending classes at a University in Dublin; this was the highlight of his week.

Anthony’s chosen life style was brought to an end when Áiseanna Tacaíochta (AT Network) based in Dublin took over responsibilities for Anthony’s support package, without Anthony’s consent, within 8 months the support was so inappropriate for Anthony that he was forced into Redwood Extended Care Facility, Stamullenfor a period of “assessment”

Anthony had already had 20 years of being assessed by professionals. But many people will know that for disabled people ineffective professionals don’t accept previous assessments they set about insisting on more and more expensive and intrusive assessments, often to underpin their initial prejudice. The irony of this ridiculous situation is that had the Senior Management at HSE had the wisdom to sit down with Anthony for a couple of hours and listen to him, they would have all the information they required.

Within three days of being in Redwood for “Assessment” Anthony was given Risperdral an antipsychotic medication and taken off his gluten and dairy free diet. Anthony made it clear to his parents that the “medication made him feel ill and very strange”. Anthony’s parents immediately protested to Redwood. They even had written evidence from Anthony’s GP of 15 years that the Risperdral medication could cause adverse reactions and his gluten and dairy free diet was essential to maintain balance within his body metabolism. Redwood refused to accept these representations, even when Anthony typed “make them stop giving me this medication”

Anthony’s parents met with Clinician at Redwood and again Redwood refused to accept their concern. Within three days of this meeting Anthony was admitted as an emergency patient to Drogheda Hospital, after having had several seizures. (Anthony had never experienced seizures before entering Redwood. After his stay in hospital Anthony was returned to Redwood where they continued with the same antipsychotic medication and kept him off his special diet.

Anthony is denied his preferred communication at Redwood

Dr Corrine Pearson, clinical Director at Redwood stated:

“when Anthony is using the lightwriter that he is not always looking at the keyboard whilst continuing to type a message. As a team this raises concerns about the validity of Anthony using the lightwriter to communicate”

This demonstrates a total lack of understanding of Anthony’s use of his peripheral vision when typing on his keyboard, common with many people who experience autism, but more importantly a blatant denial of Anthony’s right to use his preferred and essential means of communication, which he has used for over twelve years.

On the 18December 2013 there will be a case conference of staff from Redwood to decide on Anthony’s future placement. Anthony’s voice will not be heard at this meeting. There is every indication that they will be recommending that HSE place Anthony in a residential institution attached to Redwood, using the same regime.

I would urge you to contact Dr Corinne Pearson at Redwood and Geraldine Murphy at HSE in Dublin, Disability Manager and protest at this abuse of power, even a short message will help and show your concern for Anthony.

The more people speak up for Anthony, the more they will hear his voice.

Please continue sending the email until you get a meaningful response.

Please feel free to write your own detailed letter to Redwood and the HSE. However, for those people who want to make a quick response I would suggest the following:

Dear Dr Pearson and Ms Murphy,

Re: Anthony Kletzander

Please explain why you continue to give Anthony medication against his wishes and have stopped the diet essential for his wellbeing?

Anthony is clear that he wants to live in his own rented accommodation with his own personal support, which he has already experienced.

Please explain to me why Redwood and HSE are denying his human rights to direct his own lifestyle?

Yours etc

Can I also suggest you copy your email to The Director of Redwood and Senior Officer at HSE, Anthony’s TD (Irish MEP) and me so I can monitor the effectiveness of this campaign? Emails below

Please circulate this information to as many people and networks that you know who will be disturbed by its contents. This denial of Anthony’s human rights cannot be allowed to continue for Anthony or for any young person in Ireland.

Thank You

Joe Whittaker

Friend of Anthony.

Please email:

Dr Corinne Pearson: Clinical Director at Redwood.
corinne@talbotgroup.ie

Geraldine Murphy: Disability Manager at HSE Dublin

geraldine.murphy1@hse.ie

Copies to

· Director at Redwood

frances@talbotgroup.ie

· Sheila Marshall

Director of HSE

sheila.marshall@hse.ie

· Anthony’s MP

Finian.mcgrath@oireachtas.ie

· Joe Whittaker

Whittakerjoe5@gmail.com

There is also an e- petition

https://www.ipetitions.com/petition/help-anthony-kletzander?utm_medium=email&utm_source=system&utm_campaign=Send%2Bto%2BFriend

What Price Independent Lives: a new report on bedroom tax

All Posts, Bedroom tax, Disability Rights, Independent Living, Resources, welfare cuts No Responses »

Dec 032013

What price independent lives? – launched on the United Nations Day of Disabled People – highlights the combined effect of a range of benefit cuts on disabled people’s incomes and the particular threat this poses to independent living.

Analysis of Habinteg’s detailed tenancy data at a six month point after the introduction of benefit cuts revealed the specific financial hardship faced by disabled tenants as a result of benefit restrictions. It shows that two thirds of tenants affected by the bedroom tax are disabled people.

However the impact of this is deepened when the same people face other benefit cuts and variable policies by local authorities. The result is that the ability for disabled people to pay the additional costs associated with living an independent life is being severely restricted.

Key findings of What price independent lives?:

· Two-thirds of Habinteg tenants affected by the bedroom tax are disabled people and of these, after six months of the new rules being in place, only a third had been exempted from paying by local authorities.

· 56 per cent of Habinteg tenants living in wheelchair standard properties have not yet been given exempt status from the bedroom tax.

· Only 15 per cent of tenants who receive Disability Living Allowance (DLA) but live in general needs properties have been given bedroom tax exempt status by their local authority raising concerns that disabled people in this group may be faced with additionally reduced income when tested for eligibility for Personal Independence Payment (PIP).

· The localised criteria for bedroom tax exemption has created a new postcode lottery for disabled people with an inconsistent and unpredictable approach which varies between local authorities. Such variation reinforces the barriers disabled people face if they want to move, whether for job opportunities or other reasons, and deepens inequality between disabled and non-disabled people.

· Most tenants adversely affected by the bedroom tax are preparing to “stay and pay” in order to keep their existing property. The chronic shortage of wheelchair standard and accessible properties makes moving to downsize simply not an option.

· Where local authorities do not agree exempt status, Habinteg is supporting tenants to apply for financial support under the Discretionary Housing Payment (DHP) schemes. However, where information is available, it suggests that many disabled people are being refused DHP support. Three out of four case studies in the report have been refused DHPs. Some tenants have been given this support by their local authority while others in similar circumstances have been refused. This inconsistency makes it difficult for housing providers to manage their response and support tenants.

Habinteg is calling for the Government to repeal the bedroom tax, especially in respect of disabled people, review their stance on Universal Credit which will not cover service charging on disability-related adaptations and revise their plans to cut benefit payments under the transfer from Disability Living Allowance to Personal Independence Payments.

Habinteg Chief Executive, Paul Gamble, said: “Our report shows clearly the disproportionate impact from combined welfare reform policies on disabled people and highlights the very serious risk that the basic right to an independent life is threatened by the increased financial burden.

“We want the Government to acknowledge, understand and act on the cumulative impact of its welfare cuts agenda on disabled people. We are calling for the repeal of the bedroom tax, especially in respect of disabled people along with other steps to ensure their on-going right to independence and inclusion in their homes and communities.”

Baroness Rosalie Wilkins, Vice-Chair of the All-Party Parliamentary Disability Group, said: “Habinteg’s new research provides a rallying cry for choice, independence and equality. Independent living is a right not a privilege. The way in which the bedroom tax cuts the incomes of disabled people at a stroke and impinges on their ability to live independently is something that must be challenged.

“I fully endorse Habinteg in their efforts to persuade the government to listen to the evidence, call a halt to the bedroom tax and rethink a welfare benefits programme that is unfairly impacting on disabled people.”

A Habinteg tenant case study from What price independent lives? (who wished to remain anonymous) said: “I can’t begin to explain how stressful this whole process has been. It was a trauma to work out what I was going to do. I kept thinking why would they do this?

“I never believed that moving was an option as the lack of a purpose built one bedroom wheelchair accessible home gave me no choice but to find a way to pay.”

The full report can be found at www.habinteg.org.uk/whatpriceindependentlives

An Important Request on ILF from Mary Laver

Action, All Posts, ILF, Independent Living, Independent Living Fund ILF, legal challenges, Reclaiming our Futures, welfare cuts, Write to your MP No Responses »

Nov 292013

Please write to your MP urgently, asking them to save the Independent Living Fund which exists to help disabled people who need the highest levels of support. You can contact your MP easily through this website: www.writetothem.com.

Below is a message and links to a video from Mary, who is directly affected by welfare cuts. At the end of this email is a template you can use when writing to your MP.

—

Dear friends,
I’m writing to let you know about an emergency that is happening to disabled people in the UK right now as you read this email.

Some of Britain’s most disabled people – including me – are facing losing our right to living independent lives. The Independent Living Fund is a pot of money that helps disabled people who need the highest levels of support to do more than just exist.

But David Cameron’s government has already closed the ILF to new applicants – and now he wants to stop it for the group of 18,500 people who already receive it.

That will mean people like me will end up sitting alone looking out of the window for most of the day unable to even go to the toilet. Until now, despite being severely disabled by rheumatoid arthritis and unable to walk or use my hands or arms, I’ve been able to live a fulfilling life. In 2012 I was a Gamesmaker, and I carried the Olympic torch. Now, I will be imprisoned at home, and will even have to give up my beloved dogs Jack and Molly.

At 66 years old, severely disabled, and totally human and wheelchair dependent, I have found myself looking at the deep pond at the bottom of my garden, no longer wanting to live. My weight has dropped down from 9 stone to 6 stone.

But I didn’t want to just sit around feeling sorry for myself, so I asked campaigners to make a film about me. The trailer is right here. But you can also watch the whole 15 minute film by going to https://vimeo.com/79330726

You can read my full story by going to www.mirror.co.uk/news/uk-news/ros-wynne-jones-column-mary-laver-2855221

It’s not just the ILF the whole of social care provision is in crisis. Sooner or later this will affect most of you if you become disabled or when you get older.

Disabled people are also under attack from the Bedroom Tax, from the flawed Work Capability Assessment process and ATOS’ reviled tests, from the abolition of Disability Living Allowance,from cuts to council tax benefit and Benefit Caps.

We wonder what we’ve done to deserve it. We aren’t the ones who caused the banking crisis. But it seems as if we are the ones who are paying for it.

We wanted you to know what’s happening to disabled people under ‘Austerity’, because we thought if you did you’d want to campaign with us about it.

If you do, please write to your MP urgently, asking them to save the ILF. You can send them a letter at the House of Commons, or email them via www.theyworkforyou.com.

And please forward this email to everyone you know.

Mary Laver

—

You could use this as a template:

Dear MP,
The government has already been found guilty of illegally deciding to close the Independent Living Fund and now have to remake their decision. I believe that closing this fund would violate the human rights of disabled people who have the highest support needs to live independently in the community. Closure of the ILF would not only force disabled people back into residential care homes but also cause the UK to breach its obligations under the UN Convention on the Rights of Persons with Disabilities.

I urge you to watch this video, which gives a very real idea of how important this fund is, and to do everything you can to save this vital fund: https://vimeo.com/79330726

Independent Living and the Cumulative Impact of Cuts: from the streets to the Commons

Action, All Posts, Events, ILF, Independent Living, Independent Living Fund ILF, legal challenges, Reclaiming our Futures, Social Model, Speeches, welfare cuts 5 Responses »

Nov 282013

It’s been a busy few days for DPAC gathering evidence on the cumulative impact of cuts on disabled people, and on the crisis in independent living. On the 25^th we heard moving and powerful testimonies of how the Government are ruining lives through their austerity regime. Disabled people are faced with a range of cuts and so called ‘reforms’ which are contravening our basic human rights. We are faced with stark choices between eating or heating while having our dignity stripped by a range of psychological attacks at the same time as having support removed.

Testimonies will be sent to the UN rapporteur on disability-thanks to everybody who came to London to tell their stories and to those that submitted their experiences through email. This event was originally arranged by Just Fair, however due to the rapporteur being unable to come to the UK due to illness DPAC and Inclusion London stepped in to run this at the last minute, so we could get these important stories out to the UN.

On the 26^th the morning saw a hugely successful protest on fuel poverty organised by DPAC, Fuel Poverty Action, the Greater London Pensioners and UKUncut: ‘Bring down the Big Six – Fuel Poverty Kills!’ against the increase in fuel poverty deaths and increasing profits and prices of the big 6. Supporting groups included No Dash for Gas, Campaign Against Climate Change, Climate Revolution, Young Friends of the Earth, Frack Off London, Power for the People, Barnet Alliance for Public Services, Lewes Against the Cuts, SOAS Energy & Climate Change Society and Southwest Against Nuclear. There were also protests in Oxford, Lewes and Bristol.

In the afternoon of the 26^th the Emergency meeting on the crisis in independent living took place at parliament hosted by DPAC and Inclusion London. An event originally planned by Just Fair to launch their report to the UN rapporteur which DPAC and Inclusion London stepped in to run with a new focus on the crisis in independent living. This was in response to the successful appeal outcome at the courts on the Independent Living Fund-and the continuing awareness of the crisis for ILF users, those trying to access local authority support and the Government’s apparent non-compliance with article 19 of the UN Convention on the Rights of Persons with Disabilities.

The afternoon launched DPAC’s report on the crisis in independent living and cumulative impacts of the cuts, one of many that DPAC is working on, as well as the film by Mary Laver an ILF user. The afternoon was complimented by speeches from John Evans and reflection on the past battles for independent living. We heard from the brilliant Louise Whitfield (one of the solicitors in the ILF case) and were treated to an excellent DPAC theatre performance which brought to life the reality of impacts on disabled people and the different barriers we face.

Despite extremely short notice the event was well attended by MPs and those from the Lords. Kate Green , Hywell Williams, Katy Clarke, Anne Begg, John McDonnell, Jim Shannon, Andy Slaughter, Baroness Campbell, Baroness Wilkins and a host of others including Mary Laver’s MP. Apologies were sent from Anne McGuire, Caroline Lucas, Lucy Powell, Jeremy Corbyn and Theresa Pierce

Mike Penning ‘our’ new minister for disability was invited but did not respond or send apologies!

Many thanks to all that attended, supported and worked so hard towards the afternoon-especially the many DPAC members and supporters that wrote to their MPs and publicised this. Some may ask why English national formal disability organisations with much more money and resources than us aren’t putting their energies into these types of activities all the time- we don’t have any answers or understanding on that.

We will have a more detailed report on the Emergency meeting on the Crisis in Independent Living event in Parliament with film and photos soon

Download DPAC report Crisis in Disabled People’s Independent Living

See Mary Laver’s film on ILF View the movie

Independent Living Rights News (17 November 2013)

Action, All Posts, European Network on Independent Living (ENIL), ILF, Independent Living, Independent Living Fund ILF, News, Reclaiming our Futures, Social Model No Responses »

Nov 172013

1. Government’s plans for the future of the Independent Living Fund

On Monday 18 November, Plaid Cymru MP Hywel Williams will ask the Secretary of State for Work and Pensions Ian Duncan Smith:

‘What plans he has for the future of the Independent Living Fund.’

It is unclear what the Government’s response will be, but the question will be asked at 2.30pm.

It will be live on the BBC’s Parliament channel.

2. Sad News From Norway

We regret to report the sad news of the death of Bente Skansgard, the former President of the European Network on Independent Living and founder of ULOBA, a self-organised personal assistance cooperative with about 1000 disabled members throughout Norway. The following links to articles on the European Network on Independent Living web site provide more information about Bente’s life and work:

https://www.enil.eu/news/in-remembrance-bente-skansgard/

https://www.enil.eu/news/hall-of-fame-bente-skansgard/

The link below is to the pages on ULOBA’s web site in English which give background material on this significant organisation which so few disabled people know anything about in Britain:

https://www.uloba.no/english/Sider/About-Uloba.aspx

3. Scotland

Disability rights and anti-bedroom tax campaigner Pam Duncan has announced she is seeking nomination as Labour candidate for the forthcoming by-election in Falkirk.

More information from: https://pamduncan.com

Anyone wishing to express support for Pam can do so on Facebook at ‘Pam Duncan for Falkirk’.

4. News from the Independent Living Fund

Following the Court of Appeal’s quashing of Esther McVey’s decision last year to close the Independent Living Fund (ILF), the DWP has stopped all processes within the ILF associated with preparing the Fund for closure. This is consistent with the Government’s assertion during the legal challenge to the ILF’s closure that no irreversible decisions or actions would be taken until 2014.

The ILF has suspended the Transfer Review Programme (TRP) that began in April 2013. It has instructed local authorities to destroy all information gathered so far during reviews that have taken place of ‘Group 1’ users that they did not have contact with previously. Consent for the data shared was specific to the TRP, therefore local authorities no longer have permission to keep it.

An ILF user is in Group 1 if they first received funding from the Independent Living Fund before 1 April 1993. While many have since 1993 approached their local authority for additional support on top of their ILF funding, there are hundreds of ILF users who have never had contact with their local social services. Any files on Group 1 users, who only have contact with ILF, that have already been handed to Local Authorities must now be destroyed.

The ILF is writing to all Group 1 users this affects. The ILF will also be writing to all its users to explain what will happen next. If there are any significant developments, the ILF has a ‘News’ section on its web pages through which it issues any statements or information. This can be found at:

https://www.dwp.gov.uk/ilf/news/

5. DWP’s response to the Court of Appeal judgement

On 6 November, the Department for Work and Pensions issued a short statement through the ILF News page about the Appeal Court judgement which included the assertion:

“The judgement upheld the Department’s position on the consultation exercise itself, accepting that it had been carried out properly and fairly. They found that more documentary evidence was required to demonstrate that the Minister for Disabled People had considered all parts of the public sector equality duty fully.”

This is not an entirely accurate representation of what the Appeal Court said.

Information about the judgement can be found on the web site of solicitors Scott-Moncrieff Associates at:

https://www.scomo.com/061113.html

6. ‘Victory For Independent Living Rights In English Appeal Court’ Statement

The statement issued by three ILF users involved in the ILF legal challenge can be found on Disabled People Against Cuts web site at:

https://dpac.uk.net/2013/11/victory-for-independent-living-rights-in-english-appeal-court/

It has also been published on the web sites of: Inclusion London, Disability Action In Islington, the European Network on Independent Living, We Are Spartacus, Disability Wales, The Hardest Hit Campaign, Disability Wales, Independent Living In Scotland, Learning Disability Alliance Scotland and the Sisters of Frida. The statement has also been published by a number of blogs including False Economy, and the Scottish Campaign For A Fair Society and National Shop Stewards Network.

7. Muscular Dystrophy Campaign’s Trailblazers network ILF statement

Tanvi Vyas, Trailblazers Project Manager following the judgement said:

“We are delighted that the Government are not appealing this decision and will be reviewing it’s future based on further advice. However we would urge the Government to secure the future of the ILF as it is a lifeline for many disabled people who lead active independent lives. Many other disabled people could benefit from this, and the fact that future applications have closed is to the detriment of many disabled people who want to lead fulfilling independent lives.”

8. Responses to the Appeal Court judgement

• Disabled People Against Cuts

https://dpac.uk.net/2013/11/appeal-court-quash-decision-to-close-indepdent-living-fund/

• Inclusion London

https://www.inclusionlondon.co.uk/Independent-Living-victory-for-disabled-people

• Equality and Human Rights Commission

https://www.equalityhumanrights.com/news/2013/november/commission-welcomes-court-of-appeal-decision-overturning-the-abolition-of-the-independent-living-fun/

• Disability Rights UK

https://disabilityrightsuk.org/news/2013/november/our-response-ilf-court-appeal-victory

• Public and Commercial Services Union

https://www.pcs.org.uk/download.cfm?docid=F6BA54F8-8445-41F1-A44D6FDB0FCABAE0

9. Articles responding to the Appeal Court judgement

• Tourette’s Hero arguing for ‘The Right To An Active Life’ and what it means not to have the option of applying to the Independent Living Fund:

https://www.touretteshero.com/2013/11/06/the-right-to-an-active-life/#comment-615

• A very positive and supportive article by Ros Wynne-Jones in the Mirror which includes a video of ILF users outside the Royal Courts of Justice:

https://www.mirror.co.uk/news/uk-news/ros-wynne-jones-disability-fund-court-2684500

• Disability Now article featuring support for the Appeal Court victory from John Evans, one of the founders of the independent living rights movement in Britain, who said:

“I was surprised by the judgement because I was expecting the worst. We’ve had such a drastic and terrible five or six years. I’d painted a really black picture so this has made it even better for me. I’ve got nothing but admiration for those five people who put their lives and bodies on the line, who took the government to court, damaged them and won.”

https://www.disabilitynow.org.uk/article/independent-living-fund-campaigners-celebrate-successful-legal-challenge

• An interesting article from Simon Stevens satirical blog in the Huffington Post which uses the devices of ‘incoherence’ and ‘drivel’ to shed new light on disability matters:

https://www.huffingtonpost.co.uk/simon-stevens/independent-living-fund_b_4231378.html

• Comment from Stephen Naysmith in the The Herald:

https://www.heraldscotland.com/comment/columnists/inside-track-court-victory-brings-little-certainty-for-disabled-people.22673410

• Kate Belgrave article and video on False Economy:

https://falseeconomy.org.uk/blog/great-result-disabled-people-celebrate-victory-over-government-to-save-the

• BBC TV report and article by Clive Coleman about the Appeal Court victory

https://www.bbc.co.uk/news/uk-politics-24834558

https://m.youtube.com/watch?v=Q2IxmiYhPG0&desktop_uri=%2Fwatch%3Fv%3DQ2IxmiYhPG0

• An agnostic article by Rich Watts on his Arbitrary Consent blog which manages to combine welcoming the Appeal Court victory with the defence of Melanie Henwood and Bob Hudson’s appalling ‘independent review’ of the Independent Living Fund in 2006 which recommended it should close given the planned introduction of personal budgets, a key component of the ‘personalisation’ policy. Watts blog will no doubt have been welcomed by his employer, the quietly influential National Development Team for Inclusion, because if the rationale and methodology of the Henwood/Hudson report is ever scrutinised and discredited, it would throw the door open to a re-examination of ‘personalisation’ and its consequences, and the role of those who have developed and championed it:

https://arbitraryc.wordpress.com/2013/11/06/should-the-ilf-close-yes-but/

and here is DPAC’s scrutiny of the Henwood and Hudson report including a critique of the appalling methodology and time-scale of it.

https://dpac.uk.net/2013/11/why-the-henwood-and-hudson-report-failed-in-justifying-the-closure-of-the-independent-living-fund/

with thanks and acknowledgement to Independent Living Rights News

Add your voice to DPAC’s survey….

Action, All Posts, disability hate crime, Disability Rights, DLA, Inclusive Education, Independent Living, Independent Living Fund ILF, Legal aid, Reclaiming our Futures, Social Model, Welfare reforms No Responses »

Nov 122013

Add your voice to DPAC’s survey–what needs to change? What are the key issues for disabled people under this Government? We know most of them-but what about specific barriers: education, transport, building more accessible housing-are they getting worse or better?…Tell us…so it’s not just us arguing for change…

https://www.surveymonkey.com/s/WYZVQXV

Victory For Independent Living Rights In English Appeal Court: Statement by Anne Pridmore, Gabriel Pepper and Stuart Bracking

All Posts, ILF, Independent Living, Independent Living Fund ILF, Reclaiming our Futures, Social Model 3 Responses »

Nov 082013

Statement by Anne Pridmore, Gabriel Pepper and Stuart Bracking

As three of the Independent Living Fund users who have challenged the legality of the government’s decision to close the Fund, we welcome the Appeal Court’s unanimous ruling that this decision should be quashed.

Given the Government has decided not to appeal to the Supreme Court, the new Disabled People’s Minister Mike Penning will now have to reconsider the Government’s approach to the future of the Independent Living Fund and its users.

Rather than being the ‘privileged group’ referred to in the High Court judgement, the Appeal Court has acknowledged the potentially very grave impact the closure of the Fund would have on its users, putting seriously in peril the ability of a large number of people to live independent lives in their own homes, and pursue activities such as employment and education.

They concluded that when Disabled People’s Minister Esther McVey made her decision in 2012 to finally close the Fund by April 2015, she did not properly consider the need to advance our equality of opportunity, minimise the disadvantage we face, encourage independent living, and promote our participation in public life and other social activities.

For a generation, the Independent Living Fund has provided funding to support disabled people with complex conditions who need personal assistance to live in the community.

Twenty years ago, Disabled People’s Minister Nicholas Scott who founded the Fund in 1988 explained its importance to the House of Commons (25/2/1993): “It has helped those severely disabled people who did not want to go into residential care but who could not live in the community without a considerable degree of domiciliary support to maintain their independence. That is something that we can all applaud and welcome.” This is as true today as it was then.

In the same speech, Nicholas Scott also acknowledged there were limits to the financial support local authority social services could provide some disabled people: “If it is necessary for extra help to be provided….it will be open to the social worker who assesses the needs of disabled people to say, ‘We can provide services up to this level but we believe that a further level of care is necessary,’ and then to turn to the Independent Living Fund.”

The Independent Living Fund has provided a platform for social opportunities to be pursued by severely disabled people in large numbers for the first time in history.

The careers, family life, friendships, social activities and roles people have built for themselves could be undermined and in many cases dismantled if the Fund closes.

Although the Appeal Court ruled the consultation which preceded Esther McVey’s closure decision was lawful, we believe there is now an opportunity to reflect on our society’s responsibilities towards those who rely on the welfare state to keep them safe, healthy and free of distress.

Last year, 2000 individuals and organisations responded to this consultation, but the Court of Appeal held the real substance of the consultation responses were not conveyed to Disabled People’s Minister Esther McVey. An opportunity for an open, democratic debate was lost.

By responding to the World Health Organisation’s recommendation in the World Report on Disability that countries should provide services in the community and not in residential institutions or segregated settings and plan how to achieve this, the human and civil rights of disabled people of all ages could be respected, not just those of Independent Living Fund users

Until a decision is taken to save the Independent Living Fund and open it to new applicants with adequate funding to meet people’s individually assessed needs, the fear many disabled people have expressed about their future will not disappear.

This fear stems from an understanding of the impact limited support in the community will have on people’s life chances, or for some of us the low standards and rigid approaches to personal care found in residential and nursing homes which place people at risk of skin conditions, sores and sepsis.

Many Independent Living Fund users are also acutely aware that, as long-term employers of personal assistants, if they are forced into residential care their knowledge of the law and care standards will bring them into collision with poor management and abusive cultures where they exist.

There is also a significant risk for people with learning difficulties and/or autism of physical and emotional abuse in segregated settings where restraint and drugs are used to control behaviour that is defined as ‘challenging’ rather than being approached with patience, compassion and kindness.

The fear of residential care that exists among Independent Living Fund users with ‘round-the-clock’ needs also exists among large layers of the general public.

When reconsidering the Government’s approach to the future of the Independent Living Fund, the new Disabled People’s Minister Mike Penning could give the Fund a long-term future under the democratic control of its users, but also commit the Government to respect existing rights to an individual assessment of need.

His Government could give disabled people of all ages the right to live in the community throughout their lives with the personal assistance and professional services they need, rather than the artificial and segregated environments found in residential care.

We urge Mike Penning to grasp this opportunity and remove the uncertainty many thousands of severely disabled people and their families have experienced for several years.

We would like to express our sincerest thanks to: our fellow claimants Paris L’amour and John Aspinall and his parents Evonne and Paul Taylforth; the tireless work of solicitors Louise Whitfield of Deighton Pierce Glynn, Kate Whittaker and Diane Astin of Scott-Moncrieff and Associates, and our barrister Mr David Wolfe QC; the supportive intervention of the Equality and Human Rights Commission; and Independent Living Fund user Kevin Caulfield’s networking and guidance during the case.

We also acknowledge those Independent Living Fund users who have highlighted the impact closure would have on their lives, particularly Penny Pepper, Sophie Partridge and Mary Laver, which is not easy given the privacy most Independent Living Fund users and their families strive for.

We would also like to thank: Disabled People Against Cuts and Inclusion London for the campaign coordinated by Linda Burnip, Debbie Jolly, Tracey Lazard and Ellen Clifford; other users of the Fund and disabled activists who have attended protests and vigils and supported the campaign; the two thousand organisations and largely anonymous individuals who responded to the Independent Living Fund consultation a year ago; the support of the PCS union and the workers at the Independent Living Fund; our personal assistants; the work of campaigning journalist Kate Belgrave; and the consistent reporting of this issue by John Pring at the Disability News Service.

The future is ours to shape, but only if the personal assistance we need is present.

ILF and MHRN court appeals: DPAC vigils planned for October

Action, All Posts, Atos, Disability Rights, Events, ILF, Independent Living, Independent Living Fund ILF, legal challenges, News, Reclaiming our Futures, welfare cuts 1 Response »

Sep 172013

On the 14^th October, five ILF users will appeal against the previous court decision that the ILF consultation was carried out fairly at the Royal Courts of Justice. DPAC will be there again and, again have a vigil outside the courts to show support-we will update with further details as they become available.

The initial court case showed that the funds for ILF when transferred to local authorities will cover just one year, something that local authorities did not appear to be made aware of by this Government. A write up from those documents can be found here: https://dpac.uk.net/2013/03/summary-of-secret-correspondence-from-the-dwp-to-mcvey-on-the-ilf-closure/

In the meantime you might like to see some of the stories from those at risk of losing the support to independent living at https://dpac.uk.net/independent-living-fund/

As many of you know the Mental Health Resistance Network are appealing against the DWP that the WCA is detrimental to those with mental health issues. DPAC wants to be there to support them. The appeal will be heard on Monday 21st October to Tuesday 22nd October 2013. The vigil will happen outside the royal courts of justice on Monday 21st October at 12 noon until 2 pm.

The WCA is detrimental to everyone, but the obvious added stress, anxiety and lack of Atos professionalism in gaining supporting evidence is particularly severe for those with mental health issues. This system is breaking and we must keep up the pressure for the inhumane WCA to be scrapped completely, as DPAC has always argued.

Keep checking the DPAC web or twitter for updates

DPAC works with Just Fair on Independent Living Issues

Action, All Posts, Bedroom tax, Benefits, Disability Rights, DLA, Events, ILF, Inclusive Education, Independent Living, Independent Living Fund ILF, News, Reclaiming our Futures, Social Model, UK Disabled Peoples Manifesto Reclaiming our Futures, welfare cuts 1 Response »

Sep 172013

Based on the advice and guidance given by Just Fair Consortium members during the 11th July evidence gathering meeting, the Just Fair Consortium is currently working with disabled people and DPAC to produce a report examining the right to independent living in the austerity era.

Just Fair will launch the report in the Houses of Parliament in late November 2013.

Within this remit, the report will analyse the following issues:

* Personal Independence Payment (PIP);

* Under-occupancy penalty (“Bedroom tax”/”Spare room subsidy”);

* ‘Benefit cap’;

* Employment and Support Allowance (ESA) and the Work Capability Assessment (WCA);

* Universal Credit;

* Cuts to social care; and

* Closure of the Independent Living Fund.

Disabled people are leading on all elements of the research and advocacy work, including selection of the report theme and sub-issues, submission of real-life case-studies, contribution of hard-hitting statistical analysis and presentation of testimony evidence at the November report launch.

DPAC have sent Just Fair a number of reports and case studies. We will keep you updated, in the meantime if you have anything you’d like included, please email us at: mail@dpac.uk.net

The Just Fair website can be found at https://just-fair.co.uk/

Angela 28 Says: If they take away my Support it’ll be the End of my Life!

Action, All Posts, Disability Rights, ILF, Independent Living, Independent Living Fund ILF, media, News, Resources, Social Model, Welfare reforms 3 Responses »

Jun 032013

As more and more people are finding that they go from hours to minutes of support from their local authorities, as ILF users are threatened with being passed into a local authority system that cannot serve the aims of independent living, and as independent living is becoming more of a mirage every day, despite article 19 of the UN Convention on the Rights of Disabled Persons (UNCRPD) – we look at Angela’s story. Angela contacted DPAC several months ago when it was clear that her local authority were carrying out practices that appeared to be against protocol -legal representation was found. However, this could not stop the real threats to the reduction of Angela’s support or to her right to independent living:

Angela’s Story
I’m 28 years old – but if they take away my social care it’ll be the end of my life.

I’m disabled but I want to enjoy life the way any other young woman can. I have two volunteer jobs.

Now they’re threatening to take this support away – leaving me isolated at home, forcing me to go to bed at 9.30 every night, not even able to go to the toilet.

I did a degree in psychology and criminal behaviour. It was interesting but nothing like CSI! During one of the seminars, I met a representative from Headway, the spinal brain injury charity and I’ve been volunteering there for the last two and a half years. I won Luton’s Volunteer of the Year Award last year.

I’m constantly looking for paid work. I don’t sit around watching TV, I never have, I don’t believe in that. I would love to get a paid job. I have tried. I’ve been for interviews for customer services and as a support worker. Even though we are supposed to have equal opportunities, people still look at my wheelchair.

I was hit by a car when I was two. I have a spinal brain injury which has affected my left side. I can’t walk because I have no balance, so I use an electric chair.

When I turned 18, Social Services helped me find a place to live and be independent. Social care gave me total freedom to get up, go to bed, go to the toilet and settle into my new home and life. With decent social care I’ve been able to do whatever I want. I can go out and enjoy life the way any other young woman can. I have two volunteer jobs, and I can go shopping and see my friends.

Suddenly, out of the blue recently they’ve tried to cut my care from 20 hours a day down to three. I was shocked, upset and angry. I tried to negotiate with the woman at the Council and was told “life’s not perfect for anyone”. I don’t expect it to be perfect – I want to have a life like any young woman.

I’d have no freedom. I’d have to be in bed at 9.30pm and get up at 7.30am, with no way to go to the toilet in the night either. My carer wouldn’t have time to cook me fresh food (microwaved horsemeat lasagne here I come!).

Imagine living this life for the next 50 years. If I was stuck with that forever, I would give up and lose my passion for living. I would find a way to end my life.

What I’m asking for isn’t unreasonable. I just want flexibility and freedom and a little support. I’m not asking for the world. But I do want dignity and I do want freedom. If I wasn’t in this wheelchair I would have those things, so why shouldn’t I.

What’s worse is it isn’t just me. It isn’t just about reducing how much support people get. They’re taking away all support for some disabled people. Every disabled person who needs support should get it – this is about the basic dignity and freedom to live our lives.

The government has what they call a spending review coming up – it’s when George Osborne decides: How will he spend our money? What do we care about as a country?

Will you sign the petition I’ve started and send George Osborne a message loud and clear that we want adequate support for disabled people to live independently? They spent more than a billion pounds just on the Olympics village where the athletes stayed last year, surely they can put at least that much into social support for us? We only have a few weeks!
Angela Murray

Petition: https://www.change.org/en-GB/petitions/george-osborne-save-social-care-let-me-and-all-disabled-people-live-with-freedom-and-dignity

Please sign the petition and write to us at mail@dpac.uk.net with your stories. We are also looking for stories from people who were stopped from applying for Independent Living Fund support in 2010 when the Coalition closed it to new applicants.

This is not just about ‘care’ it is about independent living, the right to independent living and support for all. It is about the UK breaking its own signed commitment to the UNCRPD. It is about the impact on real lives like Angela’s. It is fundamentally wrong!

DPAC is continually gathering evidence of the impacts of the cuts, their effects on independent living and quality of life for disabled people and those with long term health issues. Unlike some other organisations we are keen to bring this Government to task through every route we can, including the legal system.

Summary of Secret Correspondence from the DWP to McVey on the ILF Closure

Action, All Posts, Benefits, Disability Rights, DisabilityCharityWatch, Europe, ILF, Independent Living, Independent Living Fund ILF, legal challenges, Politics, Social Model, Welfare reforms 3 Responses »

Mar 232013

In the court case taken by five disabled people against the proposed closure of the Independent Living Fund (ILF) , and supported by a campaign led by DPAC and Inclusion London certain documents were used. These documents are mainly correspondence between civil servants at the Government’s Department for Works and Pensions (DWP) and the minister for disabled people: Esther McVey.

These documents were released and declassified after the court case because they had been mentioned in the case. This is a summary of those documents.

Early analysis of responses to the consultation on ILF Closure (undated)

This document gives a breakdown of responses and several points for McVey to take into account. First, the consultation asked:

Question 1Do you agree with the Government’s proposal that the care and support needs of current ILF users should be met within the mainstream care and support system, with funding devolved to local government in England and the devolved administrations in Scotland and Wales?[1] This would mean the closure of the ILF in 2015.

Question 2What are the key challenges that ILF users would face in moving from joint ILF/Local Authority to sole Local Authority funding of their care and support needs? How can any impacts be mitigated?

Question 3What impact would the closure of the ILF have on Local Authorities and the provision of care and support services more widely? How could any impacts be mitigated?

As we see never were questions asked on extending the ILF or keeping it open. In fact question 1 is what is called a ‘leading question’

In the documents DWP tell McVey:

‘As we expected with the current challenges facing the care and support system, the majority of ILF users are opposed to closure of the fund, with many doing so on the basis that there could be no guarantee that their current level of funding would be protected in the future’

and….

‘A range of smaller national and local disability groups expressed similar concerns with our proposal. Some have been able to support the closures in principle but usually conditional on current user awards being protected as part of ring-fenced funding. The most vocal group has been the relatively new Disabled People against Cuts, DPAC. This group has taken a very strong critical position on a range of DWP policies’.

Yes we have and both Miller (our old mister for disabled people) and McVey refused to meet us and ILF users several times-in fact they didn’t even bother to respond to these requests!

We were very surprised to see this section advising McVey:

‘The consultation exercise has been immensely useful and we have been satisfied that we have listened to a collection of views that is representative of all those individuals or organisations that have an interest in or may be impacted by closure and devolution and have considered whether to modify the preferred position set out in the consultation in light of those views’ (emphasis added)

Amazing! Because if most said : keep it open, and if most said people would lose support or enter institutions, including responses from local authorities: what exactly did they listen to?

The documents recognize that ILF users will see a drop in support with some not being eligible for support at all

‘We do recognise that upon reassessment by LA’s most users are likely to see some reduction in the current funding levels, and there are a group of users with low care needs that may not be eligible for local authority support under current needs thresholds in most LA’s.’

The cost of closure will be £39 million! One document states that some of this has been achieved by the savings from closing ILF to new users in 2010. But closure cannot be publically defined as value for money-indeed!

‘The transfer costs mean that this proposal will cost rather than save money and therefore it cannot be defined as value for money. However the transfer costs are fully affordable’.

Not to ILF users they aren’t!

And wouldn’t £39 million, plus transfer cost be better put into ILF? Of course that’s not what they want to do, in spite of a consultation exercise where the majority appeared to say a resounding NO to closure.

Why did the DWP think it would Easy to Close the ILF?

One of the reasons given that the DWP found it so easy to close the ILF to new users in 2010 was the lack of any objections from the ‘big disability organisations’ which DWP call ‘Major Departmental Stakeholder Responses’ whatever that is.

In terms of the announcement of proposed closure in 2015 it was noted that none of these ‘stakeholders’ had requested a meeting with ministers from Westminster. Basically most had kept quiet, and hadn’t seen the closure of ILF as any big deal. Great support guys!

On this basis the DWP tell McVey in another document around the potential announcement of the closure in 2015

‘on the basis of attention shown so far, we do not think this will receive significant attention on its own…’

Guess they forgot about that vocal group DPAC and Deaf and Disabled Peoples’ Organisation: Inclusion London, because the closure of the ILF has now received significant attention in the UK and in Europe, at European Parliamentary level through MEPs and at UN level and we’ll make sure this continues.

Neither DPAC nor Inclusion London has the millions for campaigning that the big disability charities have, nor dedicated media, press and campaign teams. But we do have passion, and we do care about what happens to us all as disabled people, and we care what happens to independent living. ILF users taking the case and supporting the case have appeared on TV, on radio and in newspapers to get the message across that ILF is important and this will continue too.

Any journalists that want to know more or run stories can contact: mail@dpac.uk.net

So what did these so called ‘stakeholders’ say in response to the consultation? According to the DWP, there was not enough resistance at all.

In the early analysis document those who the DWP define as key stakeholders are broken down and their responses analysed. Below is what DWP said of their ‘Major Departmental Stakeholder Responses’ in the exact words of the DWP to McVey

Carers UK-Weakly Disagree

-User packages would be reduced placing extra demand on unpaid care

Disability Rights UK-Concerned

-Lack of choice and flexibility under Local Authorities (Las)

-User packages will be reduced

-Poor perception and past support of Las

-Difficult for ILF users to transition easily

Disability Wales- Strongly Disagree

-users packages would be reduced which could make it impossible to support ILF users in a family environment

-since the 2010 closure of the fund to applicants disabled people have had to start entering residential care.

-believes the government is targeting the disabled for cuts

-LAs could not cope with the additional workload

-Lack of choice, flexibility and dignity for ILF users under LAs

-Do not believe transitional protection will be offered

Inclusion Scotland-Strongly Disagree

-The proposal would create a postcode lottery of support

-User packages would be reduced

-LA support is budget led rather than needs led

-ILF expertise would be lost

-Lack of choice and flexibility under LAs

MENCAP-Pragmatic Agreement

-If reforms go ahead they should be about finding a better system, not cutting costs

-Funding should be allocated to LAs as a separate ring fenced funding stream based on current ILF regional spending patterns in which current users enjoy time-limited protection

-need for Government to provide advice and information to all parties

MS Society- Concerned Agreement

-Consolidation of funding streams would simplify the care system

-The proposal should not be enacted until the impact of current welfare reform is understood

-Lack of choice, flexibility and dignity for ILF users under LAs needs to be addressed

-LAs need as far as possible, to replicate the personalised expertise of ILF

-Representative groups need to be closely involved in the transition design

RNIB-Weak Concern

-Concerned that closure might lead to a breach of article 19 on UN Convention of the Rights of Persons with Disabilities

-Representative groups must be closely involved in transition design

-Current levels of support must be maintained

SCOPE-Concerned Weak Agreement

-Consolidation of funding streams would simplify the care system

-The proposal should not be enacted during current funding constraints

-The mainstream care and support system needs more experience and commitment to independent living to be able to undertake the responsibilities of the ILF

Spinal Injuries Association-Disagree

-Funding is likely to disappear into wider LA budgets on transfer

-ILF is more efficient than LAs

‘Rights not Charity’ seems very apt as the major charities for disabled people appeared to agree with the closure, after all more institutionalisation of disabled people might benefit them mightn’t it? Disability Rights UK (DRUK) a so called user-led organisation incorporating, but clearly forgetting the principles of National Centre for Independent Living, did not offer more than ‘concern’. The Spinal Injuries Association ‘disagreed’ but what this needed was for all to come out and say ‘Strongly Disagree’ as Disability Wales and Inclusion Scotland did.

Remember that when the charities ask you for money, remember that when those groups that didn’t come out fully against the closure of the ILF say they are on the side of disabled people or are working for disabled people: we believe they can no longer justify either of those statements.

The DWP told McVey that ‘stakeholders’ (SCOPE, DRUK etc)

‘..have traditionally found it hard to defend the ILF model of funding care..’

‘none of the largest national disability organisations requested ministerial meetings and many did not submit responses to the consultation. While we have had an increasing number of letters from MPs on users’ behalf, the proposal to close the fund has received almost no attention in the mainstream media’ (correspondence to McVey 7^th November 2012)

We will work through more of the documents looking at issues on transition, and the DWP’s media strategy which is unsurprisingly at odds with any issues raised by disabled people-you know the stuff Closure of ILF will give ‘choice and control’ , ‘committed to supporting disabled people’ blah, blah, blah.

The big difference here is that it is clear from the documents that the DWP are perfectly aware that ILF users will lose funding and that their needs won’t be adequately met through the local authority system.

Cuts versus Reform

Finally, the DWP were keen to try and put the message out that the closure of the ILF was not about ‘cuts’ but about ‘reform’ –what’s the difference? They do appear to believe that if they say reform we all think this is a good thing, rather than identifying that everything that comes under the heading of reform is actually another cut.

The documents cannot be clearer: this is a cut

A cut to the dignity, life chances and lives of disabled people-not just those who are currently supported to lead independent lives through ILF , but also those who would have qualified before closure to new applicants in 2010 and all who could benefit from the ILF system in the future

Support ILF users now; support a better future-say no to the closure of the ILF!

[1] Funding for ILF users in Northern Ireland is currently the responsibility of the Northern Ireland Department for Social Development, not the Department for Work and Pensions.

DPAC Briefing Notes: Effect of Cuts

All Posts, Benefits, Disability Rights, DPAC briefing notes, Politics, Welfare reforms 1 Response »

May 132012

Disabled people feel their lives are under threat and many of them are living in fear.

Data from Family Resources Survey and the National Equalities Panel Research (2010) found that:
· 75% of disabled women and 70% of disabled men are already at the bottom end of Britain ’s income distribution scale living in poverty.

· A tenth of disabled woman have disposable incomes below £31 per week and a tenth of disabled men have incomes below £59 per week including earned income and benefits.

· Already 30% of disabled people live below the poverty line and 1 in 4 families with disabled children cannot afford heating·

– The median level of total wealth for households headed by an employee is £217,500 compared to only £21,100 for households headed by someone who is sick or disabled.

– Under the coalition government’s austerity drive disabled people are set to lose at least £140 per month through direct cuts to disability benefits (initially devised to pay the extra costs of being disabled) alone.

Care and Support funding. Funding from the Independent Living Fund for care and support has now ceased to all new claimants and any additional needs cannot be met by them. From 2015 the ILF will cease to exist cutting £330 million from funding for care and support. For the 20,000 of the most severely disabled people this is a total betrayal by the coalition government and will prevent independent living.

Social Services budgets are under extreme pressure and nearly all Social Services departments have been told to reduce their budgets by 25% which has an obvious knock-on effect to their provision of support and the amount people need to pay towards this. Local authorities all over the country are cutting the amount of care funding available, tightening eligibility criteria, and increasing charges for those who are still eligible for care. In Warwickshire it is anticipated that one-third of people who currently receive free care will no longer be eligible. InBirminghamthe council are trying to remove care from over 4,000 people and move to providing care to those deemed critical only.

In many local authorities charging for care services has rocketed. One woman has told us that although she has had free care for the last 7 years she is now paying over £50 a week for the same level of service. We also know that in Dudley and Warwickshire charges have risen steeply. Are there any other local government services that people have to pay for twice, once through council tax and again through charging policies?

The Coalition are scrapping Disability Living Allowance and replacing it with a new benefit Personal Independence Payments. An arbitrary figure of removing 20% of claimants from entitlement to PIP has been decided regardless of need. Many disabled people use this benefit to help make up the shortfall they have in paying their rent or for care costs.

The mobility component of DLA may no longer be removed from disabled people living in residential care homes who do not pay for their own fees. However many people who live in residential homes still face losing mobility funding due to the abolition of DLA. This will leave many more residents with only £22 a week to pay for clothes, travel costs, outings, and basics such as toothpaste, soap, etc.

Many disabled people use this mobility component to pay for wheelchairs, mobility scooters and travel to meet friends and family. Losing DLA will leave disabled residents effectively trapped in these homes, and denied any right to a family life.

Other Benefits Employment and Support Allowance (ESA) and work capability assessments (WCAs) have been criticised by CAB, disability charities and Disabled People’s Organisations. Even people with terminal cancer have been declared fit for work and removed from Incapacity Benefit. The government have now said that from October 2010 they will speed up the re-assessment of everyone currently claiming Incapacity Benefit so that 10,000 claimants a week are ‘processed. Their overall aim in this is to remove a 1 million disabled people from higher paying Incapacity Benefit onto lower paying Job Seekers Allowance.

These assessments which ignore GP and consultant views are earning Atos healthcare £100 million a year.

Contribution based ESA has now been time-limited to 12 months and this will remove 700,000 from receipt of this benefit for any longer than that even though people may have paid National Insurance contributions for years.

At the same time as the government claim they want to help disabled people back into work they have slashed Access to Work funding which meets the costs to employers of any reasonable adjustments needed in a workplace. Yet only 20% of people with Autism and 25% of those with a mental health condition are in employment. They are not workshy, but excluded by physical and attitudinal barriers.

From Guardian letters page June 3^rd 2011. Letter from Claire Debenham, Brighton

The government says it is committed to a ‘fair and accurate’ work capability assessment. The distress and injustice caused by this new system needs to be publcised far and wide.

My brother died last week of kidney cancer. He was disgnosed a year ago and at Christmas was told he had about four months to live.In the spring he was summoned for a work capability assessment (by this time he had two brain tumours) and found fit for work. In addition to everything else, he bacame anxious about losing the small amount of money he was living on. He was aked to go in to the job centre for an interview but was too ill at the time. On May 19^th he received a letter from Jobcentre plus telling him he was to be trested a shaving limited capability for work. The medical officer overseeing his case had advised that “death within six months is unlikely to occur due to the client’s cancer” and there would be no “sunstantial risk to his mental or physical wellbeing if he were found capable of work-related activity.”

He died six days later, having been unable to get out of bed for ffour weeks. What work were they suggesting he wa scapable of? He asked:”What have I paid tax and national insurance for if not help to pay the bills and feed me at ateim like this?”

Changes to Housing and Housing Benefits

These changes will affect everyone living on a low income who rents either in the social housing or private rented sectors. The majority of people who get Housing Benefit and Council Tax benefit are in work.

There are 1.8 million households on social housing waiting lists. Last year in Birmingham there were almost 19,000 applicants on the homeless person’s register. Last year in Leicester 500 people needed an accessible property and only one was available. Currently 1 million children live in overcrowded households, changes to social housing tenure and housing benefits will only increase these numbers.

The Chartered Institute of Housing has calculated that the cumulative effect of the coalition’s proposals mean that by 2020 every tenant’s Housing Benefit will be too low to cover their rent

There are plans to time limit people’s right to live in their social rented homes and it has been suggested that they will have to reapply every 2 years. If they have improved their lives by getting a higher income they may then be forced to move out of their homes. This will apply to new tenancies or if anyone moves to a smaller/ larger property. As well as removing the right to life-time tenancies it is proposed that rents in the social rented sector should rise to 80% of market value rents- a 30% increase in rent for most tenants. Together with the caps on Housing Benefits this will make renting in the social housing sector unaffordable in many higher priced areas of the country.

Local Housing Allowance, Housing Benefit for those renting in the private sector, will be reduced for the 2 million disabled people living in private rented accommodation. The Local Housing Allowance has now been set at the 30^th percentile rent in each Broad Market Rental Area, rather then the 50^th percentile as before. Disabled people will only be able to afford to rent in the cheapest properties in any area, which are more than likely to be inaccessible.

This change will also increase the difficulties disabled people face in finding suitable accommodation to live independently, and increase homelessness amongst disabled people. The caring Condems have said people will have to move to cheaper areas yet that may be impossible for disabled people as care packages are not transportable from one local authority to another. As each local authority has its own rules and regulations the care someone has in one area may not be the same as the care they can have if they move. It also means that disabled people will lose their trained Personal Assistants.

Disabled people with learning difficulties or those with visual impairments often need several years to be able to find their way around an area and need consistency in services like GPs, nursing services and so forth to be able to survive.

Due to the size criteria for LHA parents of disabled children are also unable to get an extra bedroom for a disabled child regardless of their needs as the number of bedrooms you can get benefit for is restricted simply by the age and gender of your children.

Already one in four homes in the social rented sector are inaccessible and often disabled people are unable to get into and out of their own homes.

Housing Benefit levels have now been capped and will be capped again under Universal Credit plans.

For families renting in the private rented sector Local Housing Allowance levels is now restricted to the 4 bedroom rate regardless of the size of your family. New upper limits will be introduced which are scarcely likely to cover rent levels in many parts of London and the South East. According to government figures about 3-3,500 disabled people rent privately in central London. DPOs in London however have raised concerns that as the centre of London becomes unaffordable to most disabled people then there will be additional pressures on local councils for example in Brent where there is already a 10 year waiting list for re-housing as more people are forced to move.

From 2013 housing benefit for working age social rented sector tenants will be restricted for those who are occupying a larger property than their household size would warrant. This is something that the Labour government and DWP tried to introduce in Welfare Reform bill 2007 but were forced to drop by pressure from Housing Associations. It means that if you are living in an adapted property which may have cost thousands of pounds to adapt then if you also have an extra bedroom you have no apparent need for you will only get HB paid at the one bedroom rate. I know 2 local disabled people who have 2 bedroom council flats – one who is blind and who needs to be able to live in a location and property that he knows well, and another who has had adaptations made to his flat who from 2013 will only get Housing Benefit for a one bedroom property which will either force them to move or push them into further poverty.

Under 35s

Anyone under 35 years of age who is disabled but not in receipt of middle or higher rate DLA care component will not be able to claim for more than a shared room rate if renting in the private rented sector. Yet these are exactly the same people who cannot get onto waiting lists for social housing so they have no choice other then to rent from private landlords. As DLA is now being scrapped we currently have no idea of the full impact of these 2 changes together. However for anyone with Autism or a mental health condition being forced to live in a multiple occupancy house can be very difficult. The difference in benefit payable for a one bedroom and shared room rate is an average of £47 per week and it has been estimated by housing charities that there are 11,000 too few multiple occupancy properties so we had all better get used to seeing increasing numbers of young, homeless disabled people on our streets.

Discretionary Housing Payments

Recognising the chaos their HB reforms are going to make the sum allocated by government has increased by £10 million in 2011 and by £40 million in 2012. This will apparently give more flexibility to local authorities but DHPs are not supposed to cover long term housing costs and have to be applied for every 13 weeks. There is no right of appeal if they are refused although you can seek a Judicial Review. Leicester for example has now introduced a policy where they will only pay for a maximum of 13 weeks during which time disabled people getting a DHP are harassed to move to a cheaper property, regardless of their independent living needs.

Benefits will be linked to the Consumer Price Index (CPI) instead of the Retail Price Index, so claimants will lose £300 a year as the CPI ignores any housing costs you might have.
VAT increased to 20% will hit those on the lowest incomes the hardest – it is estimated this rise will increase each household’s costs by £500 per year

What disabled people say about these changes

.“I am in receipt of DLA, without which I could not survive. I have severe allergies, home bound, mostly bedridden. I have carers, and have to pay for extra hours not subsidized by social services. My utility bills are extremely high, and I have to contribute to the rent, which is not met by housing benefits. I also suffer from malnutrition!! Being chronically ill is costly, being depending on carers for everything.
Cutting DLA would mean that I have to find housing within the Housing Allowance which is much, much lower than rental market. There are pockets of housing, in undesirable areas, with mould and cockroaches, and no amenities, no lift, or if on the ground floor, simply not safe.
I could go on and on, about the misery it would cause, to remove DLA.
It would lead to a slow death painful death. Worth adding here, I have spoken to many in my situation, who are discussing mass suicide, rather than suffer more health miseries, for which there are no cures! They are not depressed, but pragmatic about what awaits all.”

Social Model Response to loss of Disability Living Allowance (DLA)

All Posts, Benefits, DLA, News, Welfare reforms 8 Responses »

Dec 192011

Earlier this year I was asked by another disabled person “what is wrong with you anyhow?” The person who asked this should have known better as they claim to work from a social model perspective. My obvious response to this was to ignore the question as there is nothing “wrong” with me. I have an impairment and because of the disabling barriers in society this means I am disabled.

Now I have read that Sue Marsh (who writes for the blog ‘Diary of a benefits scrounger’) has been refused DLA in spite of having severe Crohn’s disease.

DLA currently focuses on supporting people to live independently and to provide support for people’s mobility needs. The care component of DLA is a payment to meet the extra costs of being disabled whatever they are, extra food, extra heating, extra clothes, and if you’re an ILF user half of it goes towards the cost of your care and support package anyhow. To qualify for DLA you need to be unable to do certain specified tasks like cooking a meal, or have a need for constant supervision to help keep you safe. These descriptors are very medical model and look only at functional factors while ignoring issues such as you might be able to cook a meal if you had a fully adapted kitchen, or taps that you could actually turn on.

Looking at the purely physical functions someone can do is also unsatisfactory. As much is made of the can you cook a meal descriptor in deciding someone’s entitlement to DLA let’s consider this a little further. One young man with Asperger’s syndrome who has lost his entitlement to the care component of DLA can physically cook a meal but needs support to do this. Another young man with Asperger’s says this functional ability test takes no account of how stressful the tasks are and how it leaves you feeling. Yet another disabled man who loses concentration frequently can theoretically cook a meal but keeps wandering off and leaving food to burn.

For anyone with a fluctuating impairment it is impossible to get as you have to have these needs constantly for 3 months and be likely to have them for at least 6 months before you can qualify.

As I too am disabled not just by my Crohn’s Disease but on a daily basis by the treatment I have needed for this to stay alive I have the greatest empathy for Sue.

How people with impairments relate to society is complex and may be related to the nature of their impairment which can increase the barriers they face in daily living and leading a full and active life.

Using the social model approach towards defining disability as social restrictions imposed to top of people’s impairments it is necessary to make a distinction between the structures, systems, cultures, environments and attitudes that exist at the macro level of society – the level where they can institutionally exclude or marginalise people with impairments via how people with impairments are ‘taken into account’ and how they are not ‘taken into account’ – and the day-to-day social interactions which take place at the micro level of society.

In my case for example the operations resulting in the loss of several large chunks of intestine cause me daily physical difficulties and I can no longer absorb Vitamin B12 which leaves me at risk of getting pernicious anaemia. These difficulties are exacerbated because of the lack of support available to disabled people who may be able to do some of the physical and medical model tasks to qualify for DLA some of the time but not all of the time.

When my Crohn’s Disease flairs up I am unable to even get out of bed let alone cook. In fact the mere sight or smell of food often makes me be sick. I have to take massive doses of steroids to try to get better again which affects my immune system and means I’m more likely to get other illnesses too and this has also resulted in me having early onset Osteoporosis. I find it very hard to keep my weight at a reasonable level as often I can only eat things like ice cream and jelly for days at a time.

I took early retirement from work because I was advised by consultants that I was more likely to remain healthy and well if I did not work and additionally this would save the NHS a lot of money. However, if work was more flexible and I was able to work when and if I could, and have the time off to rest when I needed it then I would have been able to continue to work.

As a parent I also had the added barriers to face of having to support a disabled child who needed 24 hour support even when I was most ill. There was no help available on a short term basis and I could not afford to pay for any help myself. Many days I almost crawled around to get my son and daughter ready to go to school and then was only able to collapse back into bed. If only I had qualified for DLA then this might have been a different situation, or if social services had been able to offer some sort of short term, at home, respite support.

However with regard to social services I have to say that until it was absolutely necessary to have any contact with them I avoided this as the Children’s services and Occupational Therapy services available where I live were so shockingly awful, which having worked for Birmingham Social Services for 10 years I feel qualified to judge. What use is an OT who says things like “disability is always so dreadful” or “I’m sure new technology is very enabling but I don’t understand it” This was not the sort of attitude towards disability that I wanted my son to grow up with. He’d already discovered at the age of nine that he was considered a fire hazard so couldn’t go to the local inaccessible cinema like his friends so it was really important to me that he understood this wasn’t his fault but the fault of the cinema for not being accessible.

see DPAC campaign on DLA

Sue Bott: On independent living

Speeches No Responses »

Feb 272011

Many thanks to Sue Bott for giving us her speech to be published here.

Sue Bott

SPEECH TO INDEPENDENT LIVING FESTIVAL,

GLASGOW 17^TH FEBRUARY 2011

Sue Bott, National Centre for Independent Living

Thank you for inviting me to your festival and giving me the opportunity to speak to you about independent living and the current situation we are faced with.

We have come a long way in the last 30 years. Looking at the exhibition you have of disability history you can see how much our lives have changed since the days of institutions and low expectations of disabled people. This is thanks to the pioneering work of disabled campaigners: people like John who as part of Project 81 argued for and eventually succeeded in persuading his local authority to give him the cash so that he could employ his own personal assistants rather than have to spend the rest of his days in the Leonard Cheshire home in Lis, Hampshire; and people like Ken and Maggie in Derbyshire who were able to move out of an institution to a house where they occupied the ground floor and the people who lived on the floor above in return for living rent free provided personal assistance.

The Independent Living Committee of the British Council of Disabled People led the campaign by disabled people for direct payments so that we could arrange our own support rather than have it arranged for us. Eventually of course we succeeded and direct payments legislation was passed in 1996.

But we know, and experience has confirmed, that realising independent living is not just about changing the law. We have to change hearts and minds, we have to bring about a complete change in the culture of professionals working with disabled people. What is even more important is that we have to believe and understand independent living ourselves. I think perhaps in recent years we have become complacent and assumed there is acceptance of independent living giving us choice and control in meeting our support needs.

The last few months have taught us that there can be no such complacency. In the battle of ideas we disabled people are being severely challenged.

The UK Government is taking our terminology and abusing it. Andrew lansley, Secretary of State for Health takes the acknowledged term of the international disability rights movement ‘nothing about us without us’. How dare he! It is clear from his plans for reforming the NHS – giving all the decisions to GPs and health clinitians – that he is not talking about the rights of disabled people.

Maria Miller, Minister for Disabled People, has claimed that her plans for abolishing the Disability Living Allowance and replacing it with Personal Independence Payments are based on the social model and yet, if you get anything at all, it will only be through a medical assessment. We’re all going to be ‘PIPed at the post’!

I have heard it said that such an abuse of our language means that we should change it. Personally I do not think so, rather we should seek to explain our language more widely, what it means, and what it means for our rights.

We need to explain the social model, that it is about the environmental and attitudinal barriers facing disabled people and, contrary to what you think Maria, these barriers have by no means disappeared. Yes we have made progress but we are not there yet.

We need to explain independent living, that it is about doing what we want to do at the time we want to do it by having choice and control in how our support needs are met, and that by having such control we can be active and equal citizens.

Never has it been more important to articulate our aspirations as disabled people than now. Just consider the attacks on disabled people that the Government have unleashed upon us: –

Independent Living Fund – Closed.
DLA to be replaced with PIP which most of us will not be eligible for.
The agents of ATOS assessing us and stopping our support according to some code that only they understand.

Bye the way I have heard that here in Scotland you had a day of action that closed all the ATOS offices. Congratulations. I always say people north of the border have much to teach us southerners about campaigning.

The frankly bullying tactics of access to work administrators on disabled people who have the temerity have support in employment
The draconian cuts (as much as 20 – 30%) being made to disabled people’s care packages by local authorities

If we are to assert our right to independent living, which we are entitled to under article 19 of the UN Convention of the Rights of Disabled People, we need to build allies.

We need to build allies with trade unionists. I attended the People’s Convention in London on 12^th February. It was good to be there and have a workshop on disability rights and independent living. The SE regional Secretary of the union Unite was clearly moved by what we had to say and referred to the attacks on disabled people in his final speech. This is different to cuts campaigns of the past. We are there and speaking for ourselves.

We need to build allies by signing up to like minded initiatives such as the Campaign for a Fairer Society which was launched in ‘TheTimes’ in the last few days. I know many organisations in Scotland have already signed up.

If we don’t act what will happen? It will be: –

Back to the institutions
Back to reliance on family and do gooding volunteers
Back to having no choice and control in our lives
Back to the invisibility of disabled people in our society

We cannot and will not allow that to happen!

If you can, join us in London on March 26^th for the TUC march against the cuts. If all goes according to plan disabled people will be leading this march which will probably be an even bigger event than the anti war march in 2003.

Watch out for the disabled people mass lobby of Parliament likely to be on May 11^th.

So, go to it and do the pioneers of our independent living movement proud!

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