Wednesday, 30 March 2011

Disabled Children to be refused right to education

Every Disabled Child Matters, campaign group for the rights of disabled children has come across a recent proposal to cut down on the obligations of local authorites to provide services such as:
  • " receive social care support such as short breaks (respite) and childcare;
  • positive activities in the community;
  • equal access to education; and
  • school transport."
These proposals mean that, mere months after David Cameron repeated his promise that things would not get worse for disabled children, children could be denied access to school and their families the essential respite they need to survive with the 24/7 demands of a child with special needs.

The idea is that parents will be given more money to organise care and schooling themselves , "Dr Mary Bousted, the general secretary of the Association of Teachers and Lecturers, warned that government cuts had already led to specialists being made redundant." including vital staff like Speech and Language Therapists and Educational Psychologists who are trained to offer children with special needs the best chance of making the most of their educations and therefore the best possible future prospects.

Acces to education is a human right under Article 26 of the Declaration of Human Rights, and without the legal compulsion that oblidges state schools to accept children with special needs and make any adjustments required to accomodate them this will not be fulfilled. David Cameron is attempting to side step this requirement by making it the parents responsibility to find education for their child (and a little cash to do it with) and if education is not available to start their own 'free schools' to provide this.

So, somehow, whilst coping with the hugely physically and mentally demanding job of caring for a child with special needs - and with no time off, as somehow, you are supposed to organise your own Respite care - despite the fact that facilities that offer this are almost all state run and funded and according to the whim of your local government may or may not exist - and with no wages, experience or in most cases, piles of money to back you up, find an accessible building, hire or buy it, hire staff, carry out complex risk and safety assesments, find other children whose needs are compatible with your child's, get their parents to agree, organise accessible transport, find and apply for grants that might pay for all these things...

It's an impossible task dressed up as the big society.

The result will be children with no access to education.

Families with no access to respite giving up their children to social services in sheer desperation.

This consultation asks what duty local governments should have to provide, and the idea that access to education a fundamental human right, or respite, should be knocked off the list in favour of, say, street cleaning is utter madness.


Please, please contact your MP and David Cameron ( Or: and let them know that this WILL NOT improve the lives of disabled children - it will make their lives, and those of their familes that much more difficult.

RT: UK Disabled Children to be denied right to go to school #care4carers

Disabled familes losing right to respite #care4carers

On May 11th 2011 UK Disabled People's Charity will be spearheading a protest at the houses of parliment to highlight the fact that disabled people are those hardest hit by cuts. Please join us!

Tuesday, 29 March 2011

4 nappies a day for incontinent children assesed as needing more?!

Today we found out from a mother of two incontinent girls that despite relentless campaigning by those affected and Prime Minister David Cameron contacting Primary Care Trusts to make it clear that 'Pads (nappies) should be provided in quantities appropriate to the individual’s continence needs. [and that] Arbitrary ceilings are inappropriate’.

Some Primary Care Trusts are still ignoring this directive, and - presumably in an attempt to make cuts - introducing arbitrary limits to the incontinence pad allowance regardless of the patients assessed needs. Only a few days ago parents were blogging about having their allowance cut "It has been decided that, from now on, no child will be issued with more than four pads per day." Behind The Child

Making cuts by taking away the basic needs of some of the most vulnerable people in our society is cowardly and wrong. Let Your MP and David Cameron know PCTs are ignoring him!

Get hold of Maria Miller MP, Minister for Disabled People by email and send your own thoughts on this serious issue:
Write to Andrew Lansley, Minister for Health at:
Rt Hon Andrew Lansley,
House of Commons,
London SW1A 0AA

Please ask David Cameron why his own Primary Care Trusts are ignoring him: Or:
For a guaranteed response write a letter to either his consitituency address:
10 Bridge Street
Witney Oxon
OX28 1HY
Or at Downing Street:
10 Downing Street,

RT this: Mum of 2 disabled kids hit by PCTs ignoring PMs promise about nappies for disabled #care4carers

Please bear with us whilst we try to compile details of which PCTs are affected. If you know which areas are involved, please comment and let us know.

ETA South Gloucester PCT and Devon PCT both confirmed to have 4 nappy per day limits, despite being warned.

Thursday, 20 January 2011

Lack of respite for desperate parents isn't going to get better if the government cuts Disabled Living Allowance by 20%


This issue isn't just one for carers. After all anyone could have a disabled child, a disabled parent, a disabled partner or even become disabled themselves. Having a disabled person in your household has a huge financial impact and the financial help that Disabled Living Allowance offers often isn't enough - at highest rates it is not equivalent to mimimum wage - to provide adequate care, but without it even more carers will be facing desperate circumstances like those seen in the press recently.

Disability Living Allowance is a non-means tested benefit, paid directly to disabled people and their carers to help with the costs of supporting that person in the most basic ways.

It could pay for staff carers to offer extra respite for a few hours a day, a car so people can leave the house, special equipment, accessible taxis, assistants at activities so children can go out and do normal things like swimming or attended clubs, nappies for older children, special shoes, special accessible toys... the list is endless because it enables the people who know what they need to use it directly.

The government want to reform DLA, rebrand it and reduce its costs by 20%. The system is complicated but extremely rigorous and has a fraud rate of less than 1% (less than other kinds of benefit). So the 20% cuts can only come from taking away or lowering benefit for people who are currently judged to need and rely on it. The Conservative Party has recently suggested that the number of DLA claimants has increased by three times as much. This is not true for recent cases! In fact the number of claimants has stayed steady for the last 13 years. Read all about the truth here at the BBC.

DLA is important financially not just for the sum it offers but also the access it gives claimants to other benefits such as Housing Benefit, Carers Allowance or Income Support.

It's difficult to express here as words on a screen just how important this benefit is and how much it means to the people who receive it. Disabled people all over the country want you to know how much this means and how much they need us to help their fight, watch this fantastic video on YouTube or read about the experience at the people facing One Month Before Heartbreak We are asking you please to put all that effort you so fantastically made in our campaign yesterday toward bringing these future cuts to light and stopping them.

They are still consulting now! We have until 14th February to convince the Public Consultation on Disabled Living Allowance Reform NOT to make these cuts.

None of us can reverse the disabilities these people have. But we CAN fight this! There is so much you can do to help.

Start by signing this petition to recall the consultation. It takes 30 seconds and you can donate to the campaign there too. It asks you to register a few details (just your name and email) but these will not be used by any third party.

Get hold of Maria Miller MP, Minister for Disabled People by email if you're not sure what to write The Broken of Britain have a fantastic example letter here or send your own thoughts on this serious issue:
Or write to her here:  
Maria Miller MP
DLA Reform Team,
1st Floor, Caxton House,
Tothill Street,

Get hold of David Cameron here by email and ask him what he will be doing to stop this: Or:
For a guaranteed response write a letter to either his consitituency address:
10 Bridge Street
Witney Oxon 
OX28 1HY
Or at Downing Street:
10 Downing Street,

Get hold of Your MP and let them know that these cuts are not acceptable! This DirectGov link will explain how to find your local MP and contact them.

Next spread the word! If you use twitter please let your followers know about what is happening, the petition and what they can do. We're using the hashtag #care4carers - there are several twitter feeds worth following including @BrokenOfBritain and @DisabilityNow Try tweeting British celebrities, you never know who might be interested of affected.

You could also use facebook, start and write on your own blog, tell your friends at home, make posters for your town... anything! So many people have no idea this is even happening and time is running out.

Write to any journalists you know and your local newspaper. Suggest they find out what impact the cuts will have in their area, and how badly respite is needed already.

Please help. Disabled Living Allowance means so much to so many people, we made a difference yesterday. Let's make a difference to thousands of other people struggling and facing even more pressure.

Wednesday, 19 January 2011

Lack of respite is forcing parents of disabled children to consider putting them into care.

Riven is a mother whose child is severely disabled after brain damage during birth. Her daughter needs round the clock care which has been provided by her parents for years.

During the run up to the general election David Cameron went to Riven's house to talk to her about improving care for disabled children accompanied by the Telegraph - where he talked about improvements he wanted to make for parents of disabled children.

However, despite their child's problems being some of the most difficult it is possible to have, they are still only entitled to SIX hours respite care a week, and have just had requests for extra care and a link family turned down.

They are exhausted and considering putting her into social services care as they are struggling to cope.

Parents should not be forced into this position just to get some desperately needed help!

Please help support Riven and other families who are suffering from the lack of respite available. Any family can have a disabled child and any parent could find themselves in this position.
Statement from Riven
Thurs 20th Jan

"Yesterday, as has been reported, I called my social worker to tell her I wanted to start looking for a full-time residential care home for my six-year-old daughter, Celyn, who has severe quadriplegic cerebral palsy and epilepsy. I'd just received a letter from social services saying they was no chance of any more than the six hours respite care we receive currently.

I never imagined I would get to this point and it's the last thing we want for her but we just can't see any other option. Caring for my daughter is relentless. She needs someone 24 hours a day. She must be tube-fed, is doubly incontinent, cannot walk, talk, sit up, or use her arms. She has to be lifted using a hoist from chair to wheelchair, between bed and bath. She doesn't grow up. I sleep in a bed next to Celyn every night, beside a monitor that checks her breathing. I've barely had an unbroken night since she was born and I am exhausted. My sleeplessness leads to problems with everything else. I'm too tired to cook and give my three other children the attention I need to. Caring takes over your whole life.

And it's not just my family. Carers across the country are struggling the same way. It's not a new thing. It's been going on for years and no one government is to blame. But I had hoped that after David Cameron came to visit me earlier this year following our exchange on Mumsnet, he would have done more to protect families like ours. The money the government has allocated for short breaks and respite care - eight hundred million over four years - is not enough and worse still it's not going to be ring-fenced. So there's nothing to stop cash-strapped local authorities from using the money elsewhere.

I have no wish to put my daughter into a home. We want to look after her, all I am asking for is a little more support. Without this we simply cannot cope and nor can families up and down the country just like ours. We are crumbling."

After Riven's press release we are no longer asking people to contact the PM about her case. However please consider emailing David Cameron to ask him what he is going to do to help other carers in this awful situation all over the UK, and the cuts to Disabled Living Allowance (blogger's note: more details to come): Or:

For a guaranteed response write a letter to either his consitituency address:
10 Bridge Street
Witney Oxon 
OX28 1HY
Or at Downing Street:
10 Downing Street,

If you have the time please contact your local MP, this DirectGov link will tell you how to find and contact your local MP. It doesn't take very long and could make a huge difference to the lives of people struggling right now.

If you want to tweet about this issue please use the #care4carers and which will direct people here at You can really help raise awareness about what is a shockingly poor amount of care available in some parts of Britain.