Bringing disabled women together, mobilising
and sharing through lived experiences

My Journey started in 1984 when my partner and main carer left after 20 years, although I gave Social Services 3 months notice three days before he went they phoned me to tell me they didn’t know what to do with me. As the end of our relationship was a complete shock to me I was left without any support and an emotional wreck.

Although my partner was a disabled man neither of us had been very political and the next 7 years gave me a tremendous shake-up when I realised that services we not in place for me or anyone else. At this time in my life I had never been left alone in the house overnight.  My first experience with the home help services from the Local Authority was a wakeup call.  When I asked her if she would get my bread out of the pantry her reply was “I’m only here to get you up”.  In the evening I was subject to the district nurse who could arrive any time between 7pm and midnight consequently I had no social life.  Then there was “the bath nurse” which fell on a Monday the result of which meant that every Bank Holiday resulted in no shower.

In 1987 –by which time I had joined many committees locally – as I had no transport – I was asked to accompany the Joint Strategy committee of the LA which took me to the Kings Fund which introduced me to Jane Campbell.  She spoke about the Independent Living Fund and it was through this chance encounter I received fourteen hours in 1989.  This meant that I was able to buy in a little social time – however this was soon reduced when one evening call from a district nurse left me feeling dehumanised and tearful, I was entertaining a couple of friends when the district nurse came. As she was taking rather along time to come in I went to the kitchen to see what she was up to.  You can imagine my horror when I found her donning  a plastic pinny and rubber gloves, asking her why she said cross contamination” to which I said “never knew cerebral palsy was contagious”!  As a result of this i decided to use 7 hrs of my precious ILF to pay for support to get me into bed. It was about this time that I decided on having a hysterectomy as I did not have the support to keep clean.

During the following two years I decided I would challenge the Local Authority to swop their in-house homecare for cash. This took me 2.5 years lots of stress and angst and finally resulting in 35 disabled people getting an award called Independent Living Project or third party funding.  As many of you will remember it was disabled people who fought and won this right.

From 1989 onwards as my impairment along with aging meant that I now have 24/7 care package funded by my LA and the Independent Living Fund which has enabled me to do the things I want to do and achieve.  Just a brief overview of some of the things I have done – would include Chairing the UK Disability Forum for Europe, finding funding to instigate one of the first disabled women’s committees called edf women where we launched a website called edf.women.co.uk.  This committee is now long gone but being Chair enabled me to meet many wonderful women and produce the Disabled Women’s Manifesto; you can take a look at this on the website. ILF gave me the opportunity to travel over Europe and Sth Africa to speak and join in conferences and hold workshops on independent living and violence against disabled women.

At this moment I employ six Personal Assistants 24/7 but like many of us I fear for our future.  The closing of the ILF in 2010 has been a bitter blow to many people who would have been leading a fuller life.  Unfortunately despite our efforts we are unsure how many this is.  In 2010 the ILF was also threatened with closure – five of us decided to challenge the government decision we lost our first  challenge but decided to appeal and won, however I feel the battle is far from over and 18,000 recipients feel they are living on a time bomb.  This present government have decided to pick on the most vulnerable members of our society because they think we will back down. Let me leave you with this message  –  amongst us today we have some very strong women – on our own we are nothing together we can win.

Thank you.

Statement by Anne Pridmore, with 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.

We have posted about Anne’s fight for the Independent Living Fund and her case at court. Today it s with a heavy heart when we learnt that the high court had ruled against the claimants – one of them is Anne.

Here is Patrick Butler’s article:

Five disabled people will ask the court of appeal to overturn a high court ruling that on Wednesday upheld the government’s decision to abolish a scheme that helps them live independently.

Their lawyers had asked Mr Justice Blake, sitting in London, to declare unlawful the consultation process that led to the proposed axing of the £320m independent living fund (ILF).

Dismissing the application, the judge said many issues relating to the future funding of ILF users remained outstanding, but the consultation process had been lawful.

Lawyers acting for the five said Wednesday’s ruling at the Royal Courts of Justice was flawed and did not reflect the evidence before the court.

The solicitors Scott-Moncrieff and Associates said: “All five are adamant that the process was flawed and that the impact of closure will be devastating for very large numbers of severely disabled people. They see it as vital that the decision is quashed and the matter reconsidered on a fair and lawful basis.”

The other applicants were Stuart Bracking, Paris L’amour, Anne Pridmore and John Aspinall, who brought his case with his mother, Evonne Taylforth, acting as his litigation friend.

Lawyers acting for the applicants had argued at a hearing in March that the government had not given clear reasons for closing the fund, that it failed to set out details of how much funding would be devolved and whether it would be ringfenced,  and that the impact of the change on people in receipt of ILF support had not been properly assessed.

For the full article read it at the Guardian.

Channel 4 news Katie Razzall had the piece  all ready for broadcast that eventful evening on the 13th March where Anne was at court with the other 5 people on behalf of thousands of others –  challenging the Government’s decision to scrap the Independent Living Fund from 2015 and devolve it to local authorities instead. However, in an ironic twist, news broke that a new Pope was chosen and all news coverage focused on that instead.

It was published online instead

Anne told Channel 4 News: “It’s like the sword of Damocles hanging over my shoulder because it’s always on your mind: what’s going to happen? Many of us feel the same way. If the local authority won’t take over the funding to pay for the bit the ILF have been paying, I see the only option is being put into an old people’s home. I’ve lived in this house for 47 years and didn’t expect to have to campaign to stay in my own home at my age.”

Mrs Pridmore has met representatives from her local council to ask what their plans are.

“I pressed them but they were very cagey, and talked about other ways of providing care which doesn’t involve “hands on” care. I believe they are probably referring to things like people having to use incontinence pads. They are not doing that yet in my local authority but I know that people who have to use these in other areas.”

Lawyers for the six told us they are challenging the Government decision on two grounds.

They say the Government is breaching the UN Convention on the Rights of People with Disabilities, to which it is a signatory and which includes promises to promote independent living.

They also argue the consultation process carried out before the scheme was axed was “unlawful” because it didn’t provide adequate information on the differences between the fund and the local authority assessment and provision. They also say there hasn’t been proper assessment of the impact of the change on disabled people’s ability to live and work indepdently.

Read the rest on the Channel 4 website.
Read also her story on the DPAC website.

Firstly, we are happy for Maria Zedda of Wideaware to announce the launch that Transport Minister Norman Baker MP will today launch an improved website designed with the help of disabled people for rail passengers who may need assistance when travelling by rail.

rail accessibility

The Association of Train Operating Companies (ATOC) has expanded and renamed its successful Rail Travel Made Easy website, adding more information and advice on rail travel for the increasing numbers of disabled people now travelling by train.

The revamped site, now called Rail Accessibility – Rail Travel Made Easy, will be launched at a meeting of the National Rail Accessibility Group in Parliament this afternoon.

Maria Zedda, Managing Director of Wideaware said: “This has been a very exciting project to be involved in. The Rail Accessibility – Rail Travel Made Easy website will deliver really useful information to disabled and older passengers.”

And to announce the publication of Armineh Soorenian’s  Housing and transport: access issues for disabled international students in British universities.

This article explores two disabled people’s ‘Seven Needs’ to independent living, those of ‘housing’ and ‘transport’ issues, in relation to disabled international students in British universities. Firstly, students’ living arrangements, including issues related to the suitability of university accommodation to their disability-related needs, have been identified. Secondly, the choice and accessibility of transport used is examined. A range of barriers that this group of students encounter based on their double or multiple identities as ‘disabled’, ‘international’ and sometimes ‘mature’ or ‘postgraduate’ students has thus been identified and discussed. The article highlights the barriers that are reinforced and exacerbated by the interplay of students’ different identities, proposing ways of removing these difficulties.

Lastly but not least we wish all the best to Anne Pridmore as one of the six taking on the DWP against the closure of the Independent Living Fund in the High Court in London and we urge everyone who can make it to join the virgil on Wednesaday and Thursday. Help by writing to your MP – here’s the template letter.

We are with you in spirit, Sister, if not in body!

Anne Pridmore

We at Sisters of Frida are proud to support Ann Pridmore, from Sisters of Frida, a disabled rights campaigner as she prepares for one of her toughest fights in taking on the Government in court.

Anne will be one of six disabled people from across England challenging the decision to scrap the independent living fund (ILF).

The cash can be used for such things as hiring an assistant and getting laundry and shopping done – which are not provided by councils through social services care packages.