Tag Archives: Independent Living Fund

Three things the new government needs to remember about disability – #100days100stories

Guest post by Josie from Bristol. Josie has a number of impairments which affect her health and mobility; she uses a powered wheelchair. She is sharing her story as part of our 100 Days, 100 Stories campaign.

In 2008, I was well and working as a nurse. Then I got ill, and just didn’t get better. I was eventually diagnosed with fibromyalgia, a neurological condition which causes pain all over the body.Close-up headshot of Josie, a woman in her late 30s

I then suddenly developed idiopathic anaphylaxis – life-threatening allergic  reactions caused by a range of things, from heat to pollen and perfume. It means I need to have a support worker with me when I go somewhere new in case I have a reaction.

My other health problems mean my mobility is limited, and I’m often ill in bed for several days at a time.

I recently got an electric wheelchair, which has been amazing and has given me some of my freedom back. I have two children who live with their dad, whom I see regularly. But I still do not have the support I need to live a full life.

Two days away from the general election, here are three things the next government needs to do to make sure disabled people are better supported.

1.  Social care should support us to live, not just to survive

At the moment, I get three short visits a day from a care worker to cook my meals, help me shower, and keep the house clean.

My basic needs are met – I’m clean and I’m fed. But I haven’t got any allocated support to actually get me out of the house. It means that some days I barely get to speak to anyone, let alone have a social life.

If I get an infection and have to ask my carer to pick up a prescription, I don’t get to have a shower that day. There just isn’t enough time.

I understand why we’re in the position we’re in economically, but I worry that there will be more cuts to social care, and I really can’t see where they are going to come from.

2.  Remember that benefits are people’s lifeline

There’s nothing in my life that can be cut. Every penny that comes in goes back out, and I have to budget very carefully. There’s no ‘fat to trim’, as politicians like to say.

If, for example, my benefits were taxed, the money would come out of my food budget. I wouldn’t be able to afford online delivery for my shopping – I’d have to send a support worker, and miss a meal or a shower.

Josie, a disabled woman, smiling with her teenage son
Josie with her son Olly (her daughter Chloe is in the photo at the top of the page)

There’s a belief among some people that many disabled people don’t want to work, or choose not to. In fact, it’s the exact opposite. I didn’t choose to get ill, I didn’t choose to become disabled.  I actually found it very difficult to come to terms with the idea of claiming benefits.

Soon I’ll be reassessed for Personal Independence Payment (PIP), and I’ll have to justify myself again – there’s always a huge fear that what I have will be taken away.

3.  Disabled people deserve a role in society

A little more support – for example, a support worker to go with me to new places – would give me so much more opportunity to take part in life, but at the moment that feels like an impossible utopia!

The loss of the Independent Living Fund has been a blow – people like me, who were professionals and could make a contribution with the right support, are being cut out of the workforce.

Working in an office or a hospital isn’t really possible for me, but I still have skills and experience that I would like to use, if I had the means of doing so.

I’ve watched a lot of political debates such as Question Time over the past few years, and I haven’t seen a single person speak who uses social care. There have been a few family members, which is good, but disabled people should have a chance to speak for themselves.

A question of equality

In the end, it is a question of equality. In a fair world, I would have the support I need to live my life, and the opportunity to fulfil my capabilities.

I’d be able to go out and have a social life. I’d have support to do some work, maybe based at home where I would be able to control my surroundings. Instead I don’t feel like I’m living, just existing.

Politicians should look at my situation and ask themselves: “Would I be prepared to live like that?” And if the answer is no, they should be ready to make changes.

Josie runs a website offering support to people with idiopathic anaphylaxis at www.iamast.com

Tomorrow is the final day of our 100 Days, 100 Stories campaign. Find out why we did it, and read the rest of the stories so far.

International Day of Persons with Disabilities

Today is International Day of Persons with Disabilities, a UN-day. The theme for this year’s is: “Break Barriers, Open Doors: for an inclusive society and development for all”.

It’s an opportunity to celebrate the achievements and abilities of disabled people, with activities taking place around the world, from Gateshead to Australia.

Here in the UK, the past year has given us much to celebrate.

British double leg amputee and Paralympic Gold medalist, Richard Whitehead, highlighted just what could be achieved when he ran a marathon a day this summer from John O’Groats to Land’s End, to raise money for Sarcoma UK and Scope.

Holly Greenhow, a seven year old with cerebral palsy, continued to break down barriers by starring in the new Boden advertising campaign.

And five disabled campaigners won their Court of Appeal bid to overturn the Government’s decision to abolish the Independent Living Fund (ILF), which currently enables 20,000 disabled people in the UK to live independent lives in the community.

2013 has also been a tough year

But away from the successes spiraling living costs, and cuts to welfare and local care are leaving many disabled people in a critical situation.

Recent research by Scope found that disabled people are three times as likely to draw on doorsteps loans than the general population.

On ITV Daybreak this morning, Scope’s chief executive Richard Hawkes warned of a crisis in living standards facing many disabled people, with 1 in 3 older and disabled care users getting in to debt to pay for essential support to get up, get dressed, and get out of the house. Ahead of the Government’s Autumn Statement on Thursday, Scope are calling on Chancellor George Osborne to improve the standard of living for disabled people.

The WOW Petition

Comedian Francesca Martinez was interviewed by ITV Daybreak sofa this morning, explaining her support for a campaign calling on the Government to find out the total impact of all welfare cuts on disabled people. The WOW Petition has now been backed by over 100,000 people – which will enable it to trigger a debate in Parliament.

Francesca Martinez, who has cerebral palsy, has used comedy to challenge attitudes towards disabled people, and to fight for a fairer system. She believes that humour can be used to break down barriers.

Share your examples of people breaking barriers and opening doors this year – in the comments below, on Twitter or on Facebook.

Disability History Month 2013

Post from Alice Maynard, Chair of Scope

Disability History Month begins this week. Recently a fantastic and timely BBC documentary charted some of the big milestones in the struggle for independent living.

It’s clear society’s attitudes to disability have come a long, long way.

But it wouldn’t have happened had disabled people, like Paul Hunt, who led a care home revolt and became one of the Movement’s founding fathers, not looked around and said “this isn’t good enough”.

It’s got me wondering if this month could go down in disability history.

Hear me out…

Columnist Frances Ryan recently did a great job of summing up what life is like if you’re disabled in 2013. For too many people it’s a real struggle to live independently.

But could November 2013 go down as the month when we once again made our voices
heard?

At the beginning of the month five disabled activists waited nervously outside the court of appeal for the outcome of their challenge to the way the Government has gone about closing the Independent Living Fund. They won.

Following on from Labour’s promise to scrap the bedroom tax and news that the Government have had to slow down the roll-out of personal independence payment, have we hit a point when it’s dawning on the public that with living costs spiralling and incomes dropping that the answer to disabled people’s living standards crisis isn’t to take away financial support?

Also this month MPs are preparing to debate the Care Bill. There are positive moves in the bill – the role of advocates is now enshrined – but plans to restrict council-funded support to only those with the highest need, will force too many disabled people to have to pay for their own support to live independently. At a time when disabled people are struggling to make ends meet, that is support they simply can’t afford.

Disabled people have for too long sat outside a debate that focused on making sure middle England baby boomers didn’t have to sell their homes to pay for their parents’ care. But again it feels like disabled people are starting to make their voices heard. With disability now a mainstay in the social care debate, could the Government be forced to re-think its plans and genuinely make history by guaranteeing council-funded independent living support for everyone that needs it?

Making sure disabled people can get support is one side of the coin. The other is what that support looks like. Does it genuinely promote independent living?

This is the month that we at Scope tackled this question head on. Again disabled people’s voices have played a big part. For a long time activists have been urging Scope to transform its more old-fashioned residential homes. Not long ago they protested outside our offices.

This month we begin work on proposals to close or significantly change 11 care homes. It’s the right thing to do. But we also need to do it the right way, which means making sure disabled people who live in these homes have choice and control over where they live in the future. I don’t think we’ve done anything radical. But hopefully we’ve given the sector a bit of a jolt.

The message for Disability History Month 2013 is ‘Celebrating our struggle for independent living: no return to institutions or isolation’. Let’s remember some big milestones. Let’s not forget that we have a long way to go. But let’s be optimistic – disabled people continue to speak out and continue to make society think differently.

UK Disability History Month runs from 22 November to 22 December.
Visit the UK Disability History Month website

ILF closure: “This is about people’s lives, people’s futures”

“I’m a social worker and I’m trying to start up a community farming business.”

So much of the media and political rhetoric around cuts to support for disabled people focuses on the alleged fraudsters, people who are said to have no ambition but to live off the state. It was such a different story outside the High Court in snowy London today.

“I’ve recently travelled to Spain, Portugal and Thailand and I run my own small travel agency. I can only do it because of the Independent Living Fund.”

These are what I heard from just two of the people I met today. Their stories are of people living their lives, no matter that they have severe impairments. The support of the Independent Living Fund and social care allow them to do that – and it’s brilliant. Talking to them, it was clear they live fuller lives than many non-disabled people I know. They’re people with big dreams and independent lives, as we’d all aspire to be.

But that’s all in jeopardy. Soon, for some of the people who need this support, just being able to leave their house could be a distant dream.

The reason we were there in the snow was to join a vigil protesting the Government’s closure of the Independent Living Fund (ILF), as the High Court was about to hear a case challenging the Government’s consultation about the decision to close it.

“What kind of country are we? What kind of country do we want to be? Closing the ILF would isolate many disabled people, making them invisible. This is unacceptable in Britain in the 21st century.”

“This is not just about us now, it’s about the future too.”

These were the words of two of the eloquent and moving speakers, spelling out what it would mean to lose the support of the ILF. I believe passionately that we in Britain do care about being a fair society where everyone should be free to lead their life. But the danger now is that we backtrack 30 years to a horrendous vision someone today described as “a ‘feed and clean’ culture in which disabled people are forced to lie in bed in incontinence pads and eat sandwiches”.

Read some of the stories that people have shared recently about what the ILF means to their life and you can’t help but feel the importance of the ILF and social care.

Freedom. Independence. Dignity. These can feel like grand, empty words — until you hear the heartbreak of the everyday realities when care and support is taken away. Having to go for days without a shower; having to make your six-year-old son care for you; simply not being able to get out of your house and do what you want to do, as Scope and four other charities detailed recently. You and I wouldn’t stand for it: no-one should have to.

It’s no wonder pressure is growing on the Government to deal with the crisis in social care for disabled people. As one activist wrote today, “even in these difficult times, can the Coalition rise to this vital challenge, or will the life chances of disabled people be destroyed for a generation?”