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?”

Children and Families Bill

Jane Raca, parent and author of Standing up for James, has written the following open letter to the Children’s Minister, Edward Timpson about the Children and Families bill. If you would like to find out more about the bill, and the SEN reforms it proposes, please visit:

Mr Edward Timpson MP
Parliamentary Under Secretary of State for Children and Families
Sanctuary Buildings
20 Great Smith Street
11 March 2013
Dear Mr Timpson
I am a lawyer and author with a 13 year old disabled son. James has cerebral palsy, epilepsy, learning disabilities, challenging behaviour, and is severely autistic.
I am writing to you because there is desperate suffering going on all over the UK, which the Children and Families Bill currently before Parliament fails to remedy, even though it was intended to help.
I refer to the plight of families with severely disabled children, who are caring for them 24 hours a day from birth. These children have extensive, specialist needs. They may wake for hours in the night and need supervision or postural change. My son smears his faeces around the bedroom and sometimes attacks the person trying to clean it up. My friend’s autistic child is regularly up at night endangering himself and others. On one occasion he flooded the house and on another he climbed onto the roof. 
There are parents trying to survive for years, raising these children on little sleep, with no breaks and no help. They are suffering from depression, exhaustion and marital breakdown. Some have killed themselves and their children because they cannot face another day. 
This is happening despite the fact that local authorities are under a statutory duty to support these families from birth. Councils are relying on the ignorance of parents about their entitlements, and the use of delaying tactics, to avoid the considerable expenditure which is needed.
What can a parent do, if their local authority refuses respite and home help, as initially happened to us? The only answer is to complain to the Local Government Ombudsman, who requires that you first exhaust the council’s internal complaints procedure. This all takes months, even years. The alternative is to apply to the High Court for Judicial Review of the council’s decision. Neither option is a realistic or acceptable solution.
If life for these families is to improve, they must be able to turn to a fast, independent forum for redress. Such a forum already exists in the Special Educational Needs and Disability Tribunal. That Tribunal hears appeals from parents about their children’s special educational needs. A parent can appear without legal representation and have a hearing within 4 months, in front of specialist independent judges. 
Why can’t that Tribunal also rule on social care and health provision for these very disabled children, whose complex needs are so often inseparable from each other?  
The Children and Families Bill misses a golden opportunity to remedy this injustice. It proposes that these children’s education, social care and health needs should be viewed together, and is introducing combined plans to replace the current education-only statements. However, the right to appeal to the Tribunal will not apply to the social care and health contents of the new plans, only the education provision. So parents will be left in the same situation as now. 
The Government’s Green Paper, which preceded the Bill, said, ‘This Green Paper is about …families – who have consistently called for better support for their children and themselves. Families of the most disabled children who are providing 24 hour care from birth… ’.
If the Government really mean this, then the Bill must be amended to allow a right of appeal to Tribunal in relation to all elements of the new combined plans. New statutory duties alone will not be enough, as local authorities (and health services) may still try to get around them. If parents with the most extremely disabled children can’t get proper care provision, then a situation which belongs in a Dickens novel, not 21st Century Britain, will remain unchanged.
Yours sincerely
Jane Raca