LDA England Survey
Author: LDA England
Learning Disability Alliance England (LDA England) brings together all the leading organisations that work to advance the rights of people with learning disabilities. In January 2015 it launched a mass survey to discover what people with learning disabilities, their families and their allies thought about the current Coalition Government’s performance. We called this - Quality Checking Government.
The questions we asked were based upon LDA England’s manifesto which sets out what people with learning disabilities and their families think makes for a good society.
Statistics and scores
1,924 people completed an online survey to review Government policy across a range of 12 areas, identified by people with learning disabilities and their families as important.
Overall the survey gave Government a mark of 2 out of 10 for its performance.
50% of those completing the survey were disabled people, 27% were families and the rest described themselves as allies of people with learning disabilities or none of the above.
In more detail the results were as follows:
|Out of 10||A lot worse||Little worse||Worse (sum)||Same||Little better||A lot better||Better (sum)|
|Income & Taxes||1||69%||14%||83%||11%||4%||2%||6%|
This means income, taxes and work are where the Government scored worst; with safety, justice and health getting slightly better results - while still scoring dismally.
The overall mark was achieved by treating the "same" as equivalent to “A lot worse” as equivalent to 0 out of 10; “About the same” as equivalent to 5 out of 10 and “A lot better” as equivalent to 10 out of 10.
Quotes and stories
In addition to asking people to score the Government’s performance in these areas people were asked to share their opinions, experiences or stories. There were thousands of these and we will publish all this testimony in the coming weeks. Here are just a very few examples.
“The rights of people with learning disabilities are often ignored. When families try to speak up on behalf of them they are accused of interfering in the person's life, even when they don't have capacity to challenge decisions themselves or to make life changing decisions.”
“Legal Aid has come under fire from this government.”
“They want to exit EU so they won't have to abide by ECHR. They want to scrap legislation that assesses human rights saying its bureaucratic. They are making people work for free. They are leaving incontinent adults without care to wet the bed.”
“Budget cuts have reduced the funding available for independent advocacy services.“
“Nobody is listening. People don't know how to speak up and complain and don't know about advocacy.”
“You just try and find an advocate for under-18s, who are severely disabled with complex needs. On behalf of my daughter I have been let down by advocates who resign, go on stress leave or who are made redundant or whose organisation does not 'win' the contract to continue their service. Dumped again and again.”
3. Family life
“Everything's got worse for families.”
“How can anyone say a family is valued when we have become invisible. We often don’t get on the radar for any services, We have to fight for basic benefits, living in fear of changes to the system such as PIP or other benefit cuts. I don’t want to be on benefits. I have a lot of qualifications and experience but I cannot work as I have no one to care for the person I care for - this also means I have little social life. The person I care for was forced into an 'included' education system where she was bullied and misunderstood and not listened to. Neither was I, as it took over 2 years to get her moved, by which time she was suicidal. As a result she is socially phobic - in fear of going out and meeting the people who frightened her. This impacts on what she will do next. She is already being pressured by budgeting restraints into the one place available which is not suitable for her needs. If this happens and she doesn’t go there, we will be isolated at home dealing with benefit worries with no prospect of work or a social life.”
“Families are not supported. We spent three years seeking justice in the case of our daughter and none of the carer support systems could help as they were in the pay of those against whom we were complaining. We did eventually succeed on our own but less articulate families would have given up long since.”
4. Community life
“The cuts in local authority spending has focused on the most vulnerable as they are the ones with the least voice."
“People have less support to go out. There has been a much more negative attitude in the press and public towards disabled people.”
“Society has been turned against the disabled by this Government.”
“We have had benefits cut to a point where we are running up massive debts.”
“Having to choose between heating or food or paying the rent used to be shocking, a real horror story in terms of quality of life, now it's just a commonplace, everyday fact of life.”
“Sadly, people with learning difficulties are now seen as an easy target when targeting sanctions, making decisions on benefit applications and in medicals. Their voice, and their rights are not considered correctly and they have suffered greatly in the past 5 years.”
“My son has Asperger's Syndrome and received good support in school; however, in his last years in college, we witnessed a massive fall in standards and support while he was studying - he was given only 15 minutes a week to speak to a support teacher and that is if they bothered to turn up. It was a long hard fight to get him through his college education.”
“Post school college course used to often last three years, now usually just two.”
“My son who is unemployed has been unable to get help for several courses he could do that would lead to full employment (social work or horticulture). The job centre told him there was no funding for courses. He has nil income and is supported by myself and my partner. My partner was told by the disability advisor at the job centre to go home and ask his wife to help him to look for something to help him back to work or, if he wanted a course to train for something, he would have to look on the internet (he is severely dyslexic).”
“Nothing has got better. People are penalised even more than they were before. With a disability it is still ridiculously hard to get a job… and the DWP expect you to lie to an employer and deny your disability to get the job. If you don't go for the job you can get sanctioned. This is not fair, this is criminal.”
“If you try and do voluntary work they think you’re fit and take you off benefits”
“Any income above £20 a week results in loss of benefits, so any foray into the world of paid employment means loss of at least some benefits which are unlikely to be restored if the experiment of working proves unfeasible. This £20 disregard has remained the same for many years; it is time it was increased dramatically.”
“People with learning difficulties can't get mortgages any more. If you won't go where the local authority want you to, then your capacity will be questioned. Accommodation and support are still too often tied together. Nominations Panels decide where people live, all you can do is turn it down - it's not a real choice.”
“Bedroom tax has been an attack on the poor.”
“Benefit cuts mean people are losing their home. Also the bedroom tax forces people to move away from family.”
“Most of the support services are no longer there.”
“More and more Councils outsource health and social care to private companies. All they care about is profit so the amount and quality of care has decreased dramatically. People get stuck in hospital "bed blocking" because they are not profitable for the private companies supposed to provide there care at home.”
“A blind lady I know enjoyed attending a learning disability day centre several days a week for over a decade. After budget cuts she was reassessed and as she was merely blind her place was closed. She is now trapped in her home with one trip out a week with a carer to go shopping. I could cry over this loss of quality of life for her. I myself am fighting a battle to get the right social care services for my severely mentally disabled daughter - I will never give up, but how many do?”
“Mixed response as though better on GP health checks, hospital some better, some worse, but mental health services are dreadful - no support to crisis, getting MH admission even with psychotic crisis very hard; behaviour even if result of mental illness labelled as ld. Nothing except short-term support from community learning disability team and a waiting list that is too long - wait for a crisis.”
“Too many people living in secure hospitals with no life and no treatment - forgotten.”
“Hospital staff are under huge pressure and can't make the adjustments people need. Also people don't know what they don't know - so don't seek out training, or attending it when offered by a learning disbaility service.”
“Disabled people being harassed at local shops seems to be on the increase in some areas.”
“I am on the local safety committee and some of the things we hear are shocking.”
“My husband is in a wheelchair, I am visually impaired, my grandson has autism. The public seem to form their opinions via the media that echo the government’s attitude that every one on any benefit is a scrounger and this has left us, in our locality, being openly treated with derision and bullying behaviour. Surely we have the right to be as socially included as more 'able' people?”
“CPS… is a joke and that's how they see disabled people as unreliable or just not believable. Cases will be dropped or ignored and your be treated like you're the criminal. No money to get cases and no help for you…. Broken like the rest of the UK.”
“This is what I mean! We have been denied representation in tribunals! We have no knowledge of the law, we are in pain and confused and intimidated in a court room, where we beg and plead for money! How fair is this! Criminals are allowed representation! They may be facing jail time, I understand that, but we have been begging for our lives! Prisoners have a bloody better quality of life than the sick and disabled! We have to suffer our illnesses, most of us in chronic pain, 24/7, a nightmare, yet we have to prove our conditions over and over again, to people with no medical knowledge, we are stressed by the job centres and Atos to continually fill in forms and wait in agony for months at a time to get decisions! A constant state of stress on top of our illnesses! It's torturous! Where are OUR Human Rights?”
“The changes to legal aid availability are eroding the rule of law and access to justice for all. It will become increasingly difficult to hold people and organisations e.g. LAs to account when they act unlawfully - which they do, all the time.”
One sentence summaries:
“The Government has made everything more difficult for anyone with learning disabilities - it’s been a dreadful 5 years.”
“The Government have the view that a person with learning disabilities is a lower grade member of society and therefore it is justifiable to cut their care forcing them into an existence without any quality of life.”
“Lack of understanding of the problems and bad unintended consequences from welfare changes.”
The publisher is Learning Disability Alliance England.
LDA England Survey © Learning Disability Alliance England 2015.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.
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