Show the government that you care about Social Care

Are you disabled, in ill health, a carer or know someone who is?

CarerWatch members are extremely concerned about the impact of the Welfare Reform Act on Social Care. Not just on those people affected now,  but those that will be in the future.  It is vital we take every opportunity to raise our voices about these issues to government.

See below for details received of a new campaign – Britain Cares

Received from Scope -

I wanted to let you in on a new campaign, Britain Cares – see website here

We all know how much support is being savagely taken away at the moment, but we think coming up there is a major opportunity to help get something positive to happen.

We believe that there is the potential for a big political moment to get the Government to address the growing crisis in social care for disabled people, with the Care and Support Bill coming into Parliament in May (one of only two major Bills) and the Government’s Spending Review brought forward to this June. We need to make a big push in April and May building up to June.

It could make a direct difference to the lives of more than 100,000 disabled people in this country through providing social care – but this campaign is also really about trying to galvanize wider public support for the rights of disabled people.

We want to take it to the Government and show them actually they’re wrong, many people in this country (disabled and non-disabled) believe in good, fair support for disabled people to live their lives.

At the same time, this campaign is about trying to show there are lots of people in Britain with shared values of fairness and freedom, and we want to live up to those values by making sure disabled people can live their lives like everyone else.

We want to challenge the Government by showing them.

There are two main ways to get involved:

- Upload a photo saying “I care!” or “We care!” at  www.britaincares.co.uk  where you can email it to your MP with a message

- If you have experience of the importance of social care yourself, please share your story with your MP – we urgently need to get them to understand more about the importance of social care against the backdrop of all the other cuts – further details to be found here

Please do have a look, it’s live online now and with a first big moment around 30 April,  to coincide with two All-Party Parliamentary Groups who will be coming out with their report on social care for working age disabled people.

If you’re interested and could help share/support in any way once it’s up and running, that would be enormously appreciated.

It’s not just a Scope campaign – other charities, organisations and others are getting behind it too, we want to make this as broad a church as possible.

You can contact Joe Hall at Scope for any more information or materials: joe.hall@scope.org.uk

Motor Neurone disease – End of Life, One familys’ story (Update)

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

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