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Independent Living Fund: John, Paul and Evonne’s story

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Independent Living Fund: John, Paul and Evonne’s story

Ahead of the court case - to save the Independent Living fund for people with severe disabiities - in London on March 13th 2013, several disabled people are sharing their stories of how the Independent Living Fund has such a positive impact on their lives.

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 care 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 and ..they just dont care!!

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