We were overwhelmed by the response to our survey of people with learning disabilities, after receiving almost 1,200 completed questionnaires.
Some of the statistical findings were startling but often it was the comments that people added that were the most telling of all. For example, one woman wrote: “I don’t have enough money and the staff don’t let me do the things I want to.”
A shortage of employment opportunities emerged as a common theme. One respondent noted: “People don’t want to employ you when you’re a bit slow even though the law says they should.” Another said: “I do lots of voluntary work but I would like a paid job.”
The number of survey respondents who said they were in paid employment (22%) is much higher than the 10% figure usually quoted by the Department for Work and Pensions, although in many cases the work involved just a few hours a week. One possible explanation for the high figure is that the survey sample was made up of more people already living more independently because we went through self-advocacy groups to distribute our questionnaire.
When asked what one thing would make their lives better, a majority (52%) opted for more support. One person added: “My hours have been cut and now I can hardly function.” Another said: “I need more support and better support.”
This finding is particularly relevant in the light of the increasing number of local authorities tightening eligibility criteria for social care, which is leading to fewer people getting support overall and less support for those who remain eligible for services.
The message from our survey respondents is that these cuts are really starting to affect people’s quality of life and reverse the gains they had made.
Many of those surveyed said that while they received support for basic tasks such as cooking, there was no support in the evening or at weekends that meant they had little or no social life. Asked if anything else could make their lives better many people simply wrote “friends”.
One statistic that is cause for concern is the number who reported that they had been bullied on the street in the last year. While it is welcome which 84% said they did not face this problem, 16% said they did, and if that figure is applied to the total population of people with learning disabilities, estimated at 1.5 million, then as many as 240,000 people could be affected. Even among those who said they had not been bullied, some added notes such as “people keep banging on my door” and “kids throw stones at my door”.
The 44% figure for those in a relationship is also higher than expected, though many of the respondents who said they were not with somebody commented that they were isolated and lonely.
Just 6% of the total said they had children, many adding notes such as “I have a little girl but she’s not allowed to live with me,” and “I wish I could see my son”. Of those that did not have children, one-third said they would like to.
On the issue of direct payments, the finding that over a fifth of respondents said they were using them – or would be soon – was much higher than in other surveys, again perhaps because many respondents are active in self-advocacy groups. But it is disappointing that 37% said they had not even heard of direct payments.
Our last question was “do you think you have the same chances in life as people who do not have learning disabilities?”. The figure of 44% answering yes was perhaps higher than expected. But well over half came back with a firm “no”, which illustrates the massive challenges ahead for both government and service providers as they try to deliver the promises made in the 2001 Valuing People white paper and Equality 2025, the government’s ambition to achieve equality for disabled people within 18 years.
If our survey results (click to view survey responses) are anything to go by, though we have made some strides, there is still a very long way to go.
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This article appeared in the 17 May issue under the headline “We would like more friends and support”