Unable to apply for Independent Living Fund – Barry and Natassia’s stories

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

What the closure of the Independent Living Fund means – Jenny’s story

Please see full campaign details on DPAC website here

 

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.

 

Independent Living Fund – Anthony and Davids story

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

DAY 7 – Independent Living Fund, Kathys story

Kathy’s  Story

Without a Personal Assistant my quality of life would be greatly diminished.  I suffer from clinical depression, and become very lethargic and inclined to withdraw into myself and miss meals, if alone for long periods and unable to get out.  My deaf blindness makes me feel very isolated and I am unable to deal with paperwork mail and form filling without assistance.

Having a PA helps me to access local services such as Doctor’s, Dentists and hospital appointments, also to the bank and library. It enables me to take exercise like swimming; or shopping for food,  and clothes as one needs to be told what is there in order to make  choices.  I need someone to guide me to a place:  to get drinks and find toilets: to interpret what is being said in noisy environments or if people have accents.

I need assistance to make phone calls because of dexterity problems as well as not being able to hear.

I want to participate in meetings, and also be enabled to socialize with friends or other groups

I have little useful sight which is blurred, so it is not safe to go out alone to avoid hazards which I don’t see, both inside and out and to prevent falling, because my balance is poor, so I use an assisted wheelchair and sometimes a walking stick with support from my PA.

My PA also assists with meal,  personal care and domestic chores, with choosing clothes which match and saying if they are stained.

It is important to me to gain knowledge which involves reading study material and visiting places of interest; the theatre or cinema.  I feel it is important to stimulate my brain, as my short-term memory sometimes lets me down and I can’t remember where things are and occasionally need reminding of things I need to do.

This overview is by no means exhaustive, but shows the importance of PA’s in all aspects of my life.  I have suffered from mental illness and dread slipping into that downward spiral of self neglect and deeper depression.

Please allow me to keep my PA’s and lead a more balanced and fulfilled life than would be possible without their support.  In order to have this I need financial assistance, which has been possible through the ILF. Those who administer the service have an understanding of the needs of participants whereas other agencies may not.

Also with the government cut backs, there is no guarantee that necessary funding will be available from Local Authorities.

Further information of court hearing can be found here

 

 

Day 4 – Roxy and Sophie’s stories re Closure of Independent Living Fund

“We can’t go back 30-odd years” – watch Sophie talking about the Independent Living Fund and her fears for the future in this powerful film by Kate Belgrave.

Also read Roxys story

I have been fortunate enough to be entitled to the receipt of funding from the ILF for all of my adult life; and have consequently enjoyed a high standard of life thus far. I have multiple disabilities ( including severe physical impairment, severe visual impairment, and Type 1 Diabetes), and the ILF has meant that it has been possible for me to have my support needs met.

 

These considerable care needs mean that I require round-the-clock assistance to do pretty much everything. I need help with washing, dressing, toileting, all aspects of personal care, managing my diabetes, preparing food, eating it, undressing, physiotherapy, moving in bed over night, and those are just my very basic requirements. The extra funding from the ILF means that I can afford to get the support to live a little, rather than just meet these basic needs.

 

Read in full here

 

 

DAY 3 – John, Paul and Evonne’s Independent Living Fund story

Ahead of the court case 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.

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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

What the Independent Living Fund means to Justine

Day 2 of people telling their own stories about how vital the Independent Living Fund is to their lives.

Further details on DPAC site here  with added resources so you can take action to support this campaign.

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Justine’s story

My name is Justine Jones; I am 26 years old and I have Rheumatoid Arthritis. I used to be a confident art student at a top art school in London with great expectations of becoming a successful artist. I was looking forward to my life and all the possibilities and opportunities that lay ahead. Then my life changed when my disease took hold. For that year the disease rampaged through my body destroying my joints. My health deteriorated drastically. I lost all my mobility, I couldn’t walk or get out of bed because of pain or discomfort of my swollen joints, and I couldn’t even do the simplest of tasks anymore.

My family weren’t able to cope and I was given basic care from social services which consisted of 1 hour for the morning call to get me up, bath me, take me to the toilet, dress me and feed me. The lunch time call was 30 minutes; to make me lunch, help me to eat and take me to the toilet.

Even though I had this care in place my problems got worse; I lost so much weight combined with spending every day in bed put me at higher risk of developing bed sores. I spent all day everyday in my room, each day blurring into the next making me feel depressed, isolated and alone. I was just

What the Closure of the Independent Living Fund means to disabled people

Received from DPAC and Inclusion London

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

Save the Independent Living Fund

CarerWatch are supporting DPAC, Inclusion London , and others in their campaign to defend independent living.

Leading up to the court case we will be sharing personal stories from people affected by this cut.

We are opposed to the closure of the Independent Living Fund – a national fund that enables disabled people with the highest support needs to live independently in the community

Without the ILF disabled people with the highest support needs will lose essential support – local authorities cannot provide disabled people with the same level or type of support as the ILF and some people who get support from the Independent Living Fund now are not eligible for support from local authorities at all

What local authorities said about the closure of ILF

Can you join the vigil to save ILF

.full details can be found here  including a template letter for MP’s

contact DPAC here

contact Inclusion London here

High Court fight for disabled fund  see here

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About the Judicial Review of the Work Capability Assessment

Press Release From the Mental Health Resistance Network

On 15 and 16 January 2013, the Upper Tribunal is due to hear a claim for judicial review brought by two disabled people supported by the Mental Health Resistance Network. They are arguing that the Work Capability Assessment discriminates against people with impaired mental, cognitive and intellectual functions (called “people with mental health disabilities” for short), and that the DWP should make adjustments to the Work Capability Assessment process to minimise the disadvantages that people with mental health disabilities face in being assessed for ESA.

The reason that the ESA process discriminates against people with mental health disabilities is