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Saturday 30th March @City Hall 1pm
Saturday 30th April @Haymarket 12pm
The start of Benefits Justice Summit
Benefit justice summit Winvisible
Benefit justice summit – Mental Health Network
Benefit Summit – Using the law to fight the cuts – Wendy Pettifer 1/2
Benefit Summit – Using the law to fight the cuts – Wendy Pettifer 2/2
Benefit Summit – Using the law to fight the cuts – Liz Davies 1/2
Benefit Summit – Using the law to fight the cuts – Liz Davies 2/2
Benefit Justice Summit – Closing session – Action plan part 1
Benefit justice summit – Building campaigns locally Part 1
Benefit justice summit – Building campaigns locally Part 2
Benefit summit – Tenants Federation
Benefit summit – Food & Allied Workers Union
Benefit summit – Pensioners Association
Benefit Summit – Single Mother’s Self-Defence
From the live streaming
Benefit Justice Campaign Summit 09/03/13
Benefit Justice Campaign Summit Part 2. 09/03/13
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.
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!!
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.
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.