Tag Archives: ILF

What the Closure of ILF means to disabled people – Natassia and Petrell’s ’s story

Natassia and Petrell’s story

Natassia and Petrell’s Story

Natassia is a 21year old young woman who lives at home with her parents in South Norwood, Croydon. She wants to live an independent life with choice and control over what she does and who she does it with. Her support package from the local Council is £175 per week. This is not enough to cover the support she needs yet the Council are refusing to raise it, giving her mother the only alternative of sending her to live in residential care.

Natassia has Cerebral Palsy and requires assistance with washing, dressing,***** She wants to be active and to enjoy social networks and get of the house so she uses her budget to pay to go to a day centre of her choice in South Croydon three days a week. This costs £141 and leaves little left in the budget for meeting her needs for the rest of the week. The Council say if it is too expensive from her budget she should choose to go somewhere else but other day centres in the area are full of older people who Natassia doesn’t relate to and aren’t appropriate. The cost of getting out of the house three times a week then means that there isn’t enough money left in the budget to pay for personal assistants to support Natassia get up, washed and dressed and her parents have to rise at 4.30am to do this. They are happy to do this on the weekend but they find it too much every day of the week.

The Council says that if this is a problem, Natassia should be sent into residential care.

This is despite the fact that residential care would be more expensive than raising the level of the personal budget Natassia receives, costing £225 in rent before any costs for support and personal care.

The family home has been adapted so it is accessible and meets Natassia’s needs. It is where she wants to live.

Had the Independent Living Fund been open Natassia could have applied for support to meet her full range of needs, to receive personal assistance support that allowed her to live with her family while allowing them to live their own lives while still being able to maintain her social networks and to be part of the community.

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What the Closure of the Independent Living Fund means to disabled people – John, Paul and Evonne’s story

Through support from the Independent Living Fund my step son John is able to enjoy a much more independent way of life, than would otherwise be possible. He can at the moment, go out & access his local community and feel part of society and valued as a person. He is a young man of 30 who wants to continue to live at home and have the best possible chance of some Independence in his life. His mother has been able to set up her own small florist’s market business because the support John receives through the ILF means she does not have to support him full time.

The support John receives now through the ILF is working for him and for our family.

John stays with me now every weekend from 3pm on Friday to 9pm on Monday, which allows Evonne to work the market and to go to the wholesalers too. I also go over several evenings and mornings to bath and shower John. Because of the ILF John gets to do social things he wouldn’t otherwise be able to. John has complex physical and learning support needs and is not able to work but there are many things he loves to do. I take him to a club night every week where he meets like- minded friends for an evening out. He loves to go to the theatre or cinema most weekends and out shopping too. When the weather is suitable we often go out for drives to the seaside which John loves, and also go bowling amongst other social activities. John also likes to take holidays in the UK on holiday sites which have entertainment and wheelchair access caravans. Again the ILF means that I can take him on these and we went away for 3 short breaks last year which he just wouldn’t get to do with a cre package funded solely by the Local Authority.

If the ILF were to close completely John would lose almost 50% of his care package: his care package comes to £52,580 per annum in total, of which £23,376 is made up of ILF payments. He has been scored in the highest funding band on the Local Authority’s Resource Allocation System, but their highest indicative budget would only provide care up to a cost of £31,094 for someone living at home. This would mean he could not be looked after at home and would almost certainly need to go into residential care.

Local Authorities and social workers are already cracking under the pressure from cuts and increased caseloads. The British Association of Social workers have been reported as having to revise their own code of ethics because of unmanageable caseloads. These are the Local Authorities and social workers that the government say should be responsible for handling even more case management and care packages if the ILF is allowed to close.

We know from personal experience that Local Authorities are cutting care packages back as far as they can under budget pressures and how hard you have to fight to keep what you need even with Independent Living funding in place. The last time we had a review the social workers tried to cut quite a bit from their part of the package and admitted this was due to budget pressures and nothing to do with what John’s actual care needs are. We put up a strong resistance to this. I saw a solicitor for legal advice and let the social workers know I was doing this. We still however felt pressured to accept a small decrease in his sitting service from Crossroads which was reduced from 10 hrs a week to 5. We were told that if we accepted this the review panel would be more likely to agree not to carry out the other reductions they were trying to enforce on us including reducing John’s day centre care from 5 days to 3, his respite care from 42 days to 28, and to stopping his transport to the day centre altogether which we did successfully resist.

The closure of the ILF will have a devastating impact on our whole family. We know that the hours of support funded by the ILF will not be maintained by the Local Authority. John’s ILF package consists of 37 hours per week and I am John’s sole Personal Assistant, so as well as John losing a lot of his Independence I too would be losing my employment which will be a big loss to the family. Evonne, John’s mother, would be forced into making a decision as to whether John could stay at home as he wants to or whether he would have to go into residential care. If he stayed at home she would have to pack in her business as there is no way that she would be able to devote the amount of time needed to keep that running if she is forced into a position of having to stay at home looking after John. She often works until the early hours of the morning preparing and making up flower arrangements and is then back in the market by 8am and sometimes earlier. She isn’t getting any younger and the long term stress & fatigue of looking after John has started to take its toll. Things get harder as disabled people and their families get older and it is more not less care & support that is needed.

My Step Son of course is far from being alone, the ILF currently helps over 18,000 people with high support needs, both to access work placements in some cases, and in all cases to access support and the community in a way in which they would never be able to if it is allowed to close. It is called the Independent Living fund for a reason, it allows severely disabled people to live more independent lives than they would otherwise be able to do.

The Independence and quality of life that John enjoys because of his ILF award will all be taken away if the ILF closes and it will be a total disaster for him, Evonne & myself too. I would like to say the Government don’t realise that this will be a complete disaster for disabled people, their families and carers, but I’m afraid I think they do know this…..they just dont care!!

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What the Closure of the Independent Living Fund means to disabled people – Anne’s story

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.

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What the Closure of ILF means to disabled people – Anthony and David’s story

I am an advocate for my brother Anthony who has severe learning disabilities, autism and bi-polar. As a result of maladministration by Bradford council, when my brother went into supported accommodation in June 2001 he lost his support from the Independent Living Fund. This experience demonstrated brutally the difference between life with and without the ILF and the limitations of Local Authority care packages.

For the six years my brother went without ILF funding his life ceased. After returning from daycare at 3.30pm he did not go out again until the following morning at 8.30 back to daycare. His social life disappeared, no longer could he access the community, you could forget the days out or the occasional visits to the seaside. To my brother, a short walk down the road with his coat and shoes on can make his day seem so much more yet without the ILF he couldn’t step out of the four walls he was imprisoned in.

Although the local Council was made aware of what position they had put my brother in they refused to fund or help in anyway, continually stipulating they did not have the resources.

The ILF may well have certain flaws but the biggest flaw or mistake would be to transfer full responsibility for meeting social care and support needs Local Authorities. The lives of people without a voice, like my brother, will be ruined.

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What the Closure of ILF means to disabled people – Kevin’s story

Kevin’s story


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What the Closure of ILF means to disabled people – Jenny’s story

Jenny’s Story

Before I was referred for funding from the Independent Living Fund I lived without having my most basic needs met, spending hours unable to have a drink or go the toilet, without dignity and without any quality of life, existing between TV and hospital.

I received a package of 4 hours a day, one hour for getting me up, showered and breakfasted, one hour for house work and lunch, one hour for supper and one hour to do the “put to bed”. In between times I couldn’t get a drink or use the toilet- let alone do anything meaningful with my life. I even had one of the care workers bring her husband or (male) neighbour along as she was unable to get me in and out the bath by herself! I thought this was normal! I whiled away my days watching TV or falling asleep due to boredom. I used to be got up at 9 and put to bed at 9. I couldn’t even do shopping as it was quicker for the care worker to do it alone. I spent weeks at a time in hospital going from one health crisis to the next.
A chance meeting with a social care researcher led to me hearing of disabled people using “indirect” budgets to employ their own PAs. I was reassessed and awarded a 24/7 package partly funded by the ILF. I recruited a team of PAs who enabled me to actually have a life!

 

Through support from the Independent living Fund I have been enabled to go back to University and to enter employment, firstly through casual work as an “expert by experience” for the Care Quality Commission and to then go on to get my first full-time job in 20 years (as a Personal Budget Coordinator – the job of my dreams and my hobby to boot!).

 

I am paying into the system in 2 ways – as a Trustee of a charity – and as an economically active tax payer, thanks to my paid work. Additionally, 7 other people are economically active through their employment as my Personal Assistants.

 

In terms of saving money to the state you can also count on the fingers of one hand the number of hospital stays I have had since receiving ILF funding – and all but one of those stays were planned.

My ILF pays for a quarter of my care package – essentially 42 hours a week- and roughly the same amount of time that I spend at work, in education or taking part in leisure activities.

I can’t bear to think of a return to life without these opportunities.

Unfortunately in my job I see many people who are suffering the dreary lifestyle that I had once had as they have missed the chance to apply for ILF funding. One client says that she feels she is treated “worse than a dog – at least dogs get taken for a walk every day” – as she spends all but a couple of hours a week in bed. She doesn’t have a package flexible enough to have someone around to help her back to bed when her muscles no longer allow her to maintain her position in her wheelchair. The hour that she can spend in her chair, while the care worker is doing housework, she drives from room to room like a caged animal “just to make sure the other rooms are still there”!

I have no doubt that ILF funding would have made her life much, much better.

I am worried for the day that my 42 hours funded by the ILF disappear and I resort to driving from room to room, no longer able to pay for the support I need to lead the meaningful life I currently enjoy thanks to the ILF.

 

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What the Closure of the Independent Living Fund means to disabled people -Mary’s story

In the count-down to the ILF court case on 13th March we will be publishing on a daily basis individual stories from disabled people affected by the closure of this essential source of independent living support.

This follows the powerful testimonies recorded by journalist Kate Belgrave and published by the Guardian:

Please circulate the links to the stories and use the tools in the campaigns pack to promote the Independent Living Fund campaign as widely as possible.

All details can be found here

Our first story is from Mary Laver

My love affair with the Independent Living Fund (ILF) started over 25 years ago, – I was just 40 and I am now 65, – when it came into my life, a life that I was existing not living.

Within 12 months of becoming crippled with Rheumatoid Arthritis at the age of 40 I was unable to leave my bed and this remained the case for the next 2 years.

I found myself in a position where I could not bear weight on my legs or feet, and my arms very quickly bent making it impossible to get out of my bed and into my powered wheelchair.  My care from social services was very basic at 2 hours per day. All but 2 of my friends deserted me.  I watched the seasons change by the reflection in a picture I had on the wall opposite my bed, which by this time, was now in my lounge.

Life was very grim until my social worker told me about the ILF; my love affair was to begin.

Being introduced to the ILF was not easy, my social worker had to fill in a long and complicated form and then we just had to wait for the verdict, yes or no to me getting the ILF, which was a long time coming. Meanwhile I decided to sell my house and buy a bungalow, which I did from my bed, and by the time the ILF was confirmed, the sale had gone through and I was on the move to my new home and my new life with my ILF.

I will not bore you with all the life changes over the past 25 years thanks to the ILF, but I will jump straight to 15th June 2012 at 5.03 pm Newbridge Street, Newcastle and a crowed eagerly awaiting the Olympic Torch to approach because that was the date, time and place that I was to have the greatest honor of my whole life, I was to carry the Olympic Torch in recognition of my charity work.  The list is long and you can Google me to find out more, but highlights are I drove my power chair from Lands End to John O’Groats making it into the Guinness Book of Records, which I did for the Royal British Legion, I have spent for the past 22 years, two weeks each year selling poppies, I have been pushed in my manual chair to raise monies for various charities in 16 Great North Runs. The list goes on and none of this would have happened without ILF.

My life does not all revolve around good works. My ILF also enables me to go out for long walks with my two much loved Jack Russell’s, Jack and Molly. My ILF enables me to visit places of interest, to have the freedom to do what I want, when I want, with whom I want.  I also use the ILF time for my carer to take me to my hospital and doctor’s appointments.

In all to sum up I would say I lead a life full of challenges and wonderful experiences mixed up with the odd boring moments.

But if I am divorced from my ILF I will be living a life of hell in my beautiful bungalow. My beloved dogs will have to find a new home. My social life will disappear.

How do I know this?

I know because I have seen what my care package would look like without the ILF contribution. Per day, I would receive support for a carer to sleepover, then 1 hour support for lunch, and 1 hour for tea. Per week would be added 7 hours for social activities, 90 minutes for shopping, 45 minutes for housework and 20 minutes ironing, plus 2 support slots of 15 minutes each for showering.

With nothing but a Local Authority care package I  would have a future of nothing more than sitting in my wheelchair from quarter to eight in the morning until half past ten at night with only two breaks, at lunch time and at tea time.  Without support to go to the toilet between visits from a care assistant I would be wet, so when the care assistant did come for the hour lunch time and tea time would need to be taken to clean me. I would also get a sandwich, a hot drink and be toileted. At tea time instead of a sandwich I

would get a warmed up meal, which would have to be a microwave meal because no time would be allowed in my support package for cooking.

By the time the night staff came on at ten, I would be wet again and need to be washed and changed as well as been given a hot drink and put to bed at half past ten.

Being left wet for so many hours every day would lead to open pressure sores which would need to be treated by a nurse on a regular basis.

My day would be nothing more than me sitting in a wet pad, just being fed and watered, no Jack and Molly to keep me company, and above all no freedom to do anything I wish. My home will be my prison.

Oh except for my 7 hours of social care per week. Well with that I could use it to have one day out of the house per week or I could add 1 hour per day to my lunch or tea time call to make it less rushed.

Being very dramatic, there is a pond at the bottom of my garden and if I were to finally mentally snap, unable to take any more of this appalling care, it would only take a few minutes and all my problems, and that of the government, will be sorted… Or I could get someone to leave my gate open- I cannot do that myself- and a short metro ride would see me on a short pier where I could take a long walk…

The other alternative would be a care home.  Would the people who are taking my ILF away care to live in a care home? The pond seems more inviting.

So there you have it, my love affair with the ILF.  I will fight with every breath in my body to keep this affair going on.

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