Sep 062014
 

SaveILF - Cos we're not taking no for an answer

BLOG of an ILF user by Anne Pridmore

22ndAugust 2014
Awoken by Brody (one of my cocker spaniels puppies) kissing my face swiftly followed by Eben and Suzie Brodys mother. Thought I better get up and greet the day so pressed the buzzer for my PA had a quick wee then waited for my first cuppa in bed, don’t get up too early these days.
Had breakfast (in bed) and decided to have strip wash rather than a shower. Asked PA to check for pressure sores as I can easily get them can result in stay in hospital. P A assisted me to get dressed and went into bathroom for teeth hygiene all facilitated by PA. Had BIG mug of coffee and felt ready for day.

Went with PA to get vegetables for dinner and took Eben with me. Had long conversation with my choirmaster’s husband about our new season. Without ILF I would not be able follow my love of singing. Arrived home and asked PA to unlock office and fire up computer. Answered some emails then had lunch prepared by PA. Made sure my fluid levels were up as had nasty scare last week because I failed to drink enough I couldn’t go for nine hours. It is crucial to drink on the hour failure to do this will damage my kidneys. This of course does result in many trips to the toilet facilitated by PA and also the odd accident which means I have to have another shower and change of clothes. In the bad old days before ILF I remember having to dry my clothes (I had on) with a hair dryer. I also was forced into having a hysterectomy because I had very heavy periods and could not keep clean because of having only “pop ins” a few times a day. My ex husband was infertile and we were refused AID or adoption. I was still young enough to have children and this has always been a sadness. Had lunch mushrooms on toast prepared by my PA.
Need to stop now as am going to exercise three dogs up the recreation ground with my PA who will assist me and pick up the pooh!
Had pork roast cooked by PA.
Had bad night owing to pain needed turning six times. Failure to do this results in pressure sore with can lead to skin graft.

23rd August 2014
Took dogs with PA walk on canal – got wet which necessitated PA changing me – find this tiring. Decided to have a shower and hair wash etc. Remember the days when I had to rely on bath nurse once a week my day was Monday and of course every Bank Holiday falls on a Monday so that meant waiting three weeks.
In the evening I had dinner but as it was freezing decided to go to bed at 8.00 pm and play bridge on my ipad. No more not knowing when the community nurse would come at any time to suit her. This is 28 years ago and I was much younger then, even though I was the youngest on her list she often came at 7.00 pm. I am sure it was more about “power and control” rather than putting me to bed at a reasonable time. Had cup of tea and chat with PA had drugs (prescription) and settled down to good book. Another very disturbed night – having to wake my PA five times to reposition me.

25th August collect my friend from her home to go to the cinema, My PA drives for me and I can recall the days before ILF when I was imprisoned in my own home. I had absolutely no social life at all. When we got home me and my PA took my two dogs to the local recreation park. This was only possible because my PA was able to pick up the dog pooh.

26th August had to get up early to be ready for my student who I am teaching to update our website. The beauty of having ILF to fund PAs is that if I need to get up early or fancy a lie in I am able to do this. Before the ILF I was at the mercy of the home help service and had no choice or control in my life. Going back to the mid 80s when I was entirely dependent on statuary services I was controlled by whoever determined the home carers hours. I remember raging about the fact that it was impossible to visit friends or have relationships because I never knew the time people would turn up. There was a particular occasion when I met a man and invited home to stay overnight with me. I rang the social services department to ask them to cancel my visit. But they told me that was impossible so I locked the back door and stuck a notice on the door which read “NO HELP NEEDED MAN IN HOUSE”. During the afternoon I was visited by the person who operates the volunteer centre. She came to give me feedback on the IT support I had been giving to an elderly lady in my district. I had only been able to do this because my PA was able to take and collect me.

27th August Had to be up early for PA training as I am recruiting a new PA this went on until 11.00 am then I collected my friend and took her to Leicester to choose a new outfit for a wedding. Ate lunch in town then came home all with the support of my PA.

28th August Went down town with PA grocery shopping. Then made orange and chocolate cake with PA looks and tastes yummy!

30th August Had leisurely breakfast made by PA then had lunch after which my PA drove me to cinema film was mediocre. Had lovely roast cooked by PA. Both dogs up the rec with my PA – dogs had lovely time. Watched some TV then decided to have an early night, perhaps readers might think nothing unusual about this but in the old days before ILF I had no choice as to when I went to bed.

31st August Trip to Aldi to purchase the food for our holiday in two weeks. Came home PA put shopping away and we both had lunch.
Mark Williams-My ILF Photo Diary
This diary aims to show how the ILF helps me to lead an independent life in the community. Without the ILF I would be trapped in my own home with no life.

Saturday 23rd August 2014
Today I met up with two friends, one of whom I knew at school and had lunch with them in a café. This is how the ILF helps with my social life.

Collette and Mark

Thursday 28th August 2014
Today I went to an accessible climbing event where I sat on the Bristol Disability Equality Forum Stall in order to publicise the group and get more members.

Promoting the BDEF

Keep up with our new ILF Diaries page coming soon

join the facebook group or find other ways to support the campaign at the link

https://dpac.uk.net/2014/04/support-the-saveilf-campaign-by-using-this-twitter-or-facebook-picture/

#saveilf

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.

Mar 052013
 

Anne’s ILF story

Anne

Anne

My partner of 20 years left me in 1984. I am ashamed to say that until this time I knew nothing about disability rights let alone Disabled Peoples User Led Organisations. When I informed my social services department they hadn’t a clue as to how they were going to support me.
From 1984 until 1988 was four years of hell, never knowing who was going to get me up in the morning, put me to bed and all the other bits in between. I joined a Local Authority Strategy group with whom I visited a conference in London. It was there I met Jane Campbell who introduced me to the ILF.

To begin with I had only 14 hours ILF funding which in the early days I used to do some social things and join a local DPULO becoming chair after six months. However I was still having home care, districts nurses to put me to bed and a bath nurse once a week except on Bank Holidays when I could miss a bath for three weeks. During this period of my life I was forced into having a hysterectomy because with the limited amount of support I received I was unable to keep myself clean. One evening whilst entertaining two friends the nurse arrived and donned a plastic piny and gloves to undress me. Seemingly cerebral palsy had become contagious, this is when I decided to use some of my precious ILF funding to support me to go to bed.

As the years went on and my impairment grew worse I eventually got 24/7 funding half of which is paid for by the ILF. This package has enabled me to run local, national and European DPULO’s. The latter gave me the opportunity to travel all over Europe supporting people to fight for their rights to independent living. During the 28 years I have been part of many nongovernmental organisations, fed into countless government “think tanks” etc none of which would have been possible without the ILF because Local Authorities will or can only support basic care needs.

When you read my story you may think what a drain I have been on society but let me remind you that I keep six Personal Assistants in work, pay employers National Insurance, contribute both economically and mentally to society, run a web based organisation for disabled people who employ their own PAs, carers or support workers – none of which I could do without the support of ILF.