18 May 2013
Received from Robert Watson. Please sign his petition and then share with your own family, friends, networks.
CarerWatch fully support Robert
I just started the petition “Create respite facilities to support disabled adults with life-shortening conditions aged 21-45″ and wanted to ask if you could add your name too.
This campaign means a lot to me and the more support we can get behind it, the better chance we have of succeeding. You can read more and sign the petition here:
1 April 2013
My name’s Frances Ryan and I’m journalist covering cuts to disability support. I’ve recently worked with DPAC for stories/interviews about DLA and ESA, and the bedroom tax.
To fit in with new research on the cumulative impact of April’s cuts, I’m currently looking for disabled people who are set to lose multiple benefits – and would be happy to share their story (anonymously if needed) for a possible article.
Will you be hit by the six major cuts?
They could be:
Contributory Employment Support Allowance
If you’re currently on low rate Disability Living Allowance – or perhaps are on a higher rate but have reason to believe you will not be elibible under PIP
Council tax benefit reduction/loss
Any other benefit cut/loss coming in this April.
If you are going to be affected by simultaneous cuts and are happy to speak to me please email firstname.lastname@example.org (rather than leaving a message here as I wouldn’t want to miss your message).
Thank you very much.
27 March 2013
- Thousands of disabled people will be hit simultaneously by up to six different welfare cuts
- Disabled people will lose £28.3 billion of support by 2018
- Up to 3.7 million disabled people affected in total
- Demos calls on the Government to publish the cumulative impact of multiple cuts to benefits
- Scope asks where disabled people fit in to Chancellor’s ‘aspiration nation’
for full details and the report, please see here
26 March 2013
This is an update from Helen Findlay, who first shared her familys’ story with us in 2009
THE FINDLAY REPORT was first published informally in 2006.
It was written by me and other family members and relates the experience that my 85-year-old father, James went through in trying to get appropriate care after he was diagnosed with Motor Neurone Disease.
It contains a day-by-day account covering four months detailing what was happening to him and the activities of health and social care services around him in the community, in a care home and in hospital where he eventually died. It also contains recommendations from us about how his experience of care could have been so much improved and enabled him to have had a ‘good’ end of life experience.
From the diagnosis of MND until my father’s death was just seven weeks. In those seven weeks we all lived a lifetime. They were weeks coloured by stress, problems, despair, feelings of helplessness, intense sadness and tears all because of the way that my father was treated, as well as what the disease was doing to him, the way my mother, Joan, who had dementia was treated and the way we, his children and other family members were treated. But it was a time that was also coloured by mounting anger. And it is the anger that is still driving my family and me on in pushing for the problems and solutions that we identified to be implemented not just locally with the care services where my father lived but also nationally as what happened to him can be multiplied many times over.
If you want proof of this then you only have to Read the rest of this entry »
13 March 2013
After a long wait the day for the court hearing re Independent Living Fund is now here. Full details about the hearing and vigil can be found here.
There will also be an interview shown on Ch4 news at 7pm March 13th.
Please show your support throughout the afternoon by sharing these details as wide as possible. A few attending will hopefully be tweeting using hashtag #ILF
I am Barry McDonald, I am 28 years old. I am a wheelchair user. I enjoy watching football and going out to the pub with my friends. I do a lot of volunteering around sports and improving services for Deaf and disabled people. I am ambitious as I have life goals I want to achieve: to be in a long term paid job, to move out on my own and to be in a position where I can be actively involved in doing all I can to improve services provided for disabled people and working towards a world that can one day be fully accessible for all.
I can’t do these things on the level of support I get from my local authority. I receive 45 minutes of social care per day for personal care. I receive nothing for domestic, social or leisure activities because my local authority will only fund support for basic personal care needs.
As a young person the hardest thing I find is not being able to Read the rest of this entry »
12 March 2013
Please see full campaign details on DPAC website here
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.
11 March 2013
Received from Hardest Hit
Help us stop the bedroom tax hurting disabled people
In a matter of weeks disabled adults and families with disabled children face a stark choice- pay more to stay in your home or leave.
From April, people living in housing association and council housing will be hit by the ‘bedroom tax’. Families judged to have spare rooms will lose on average £728 a year from their housing benefit, unless they can move somewhere smaller.
420,000 disabled people will be affected. This is because couples, where one partner has a disability, may need separate rooms. It’s also because many disabled children need their own room because of disrupted sleep or because they need care during the night.
The Government has recently been told by the Court of Appeal that denying disabled children their own bedroom is discrimination. But they are appealing that ruling and pushing ahead with the changes to Housing Benefit.
Please take our e-action and tell David Cameron to stop and think. Tell him to stop discriminating against disabled people.
10 March 2013
Many testimonies have been shared over the last few weeks about the impact the closure of the Independent Living Fund will have on peoples lives. The hearing is Wednesday March 13th .
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.
For further details please contact DPAC here or Inclusion London here