Disabled people will be at the heart of a £5 million, lottery-funded programme to research the state of independent living and come up with “practical improvements to disabled people’s lives across the UK”.
The Big Lottery Fund (BLF) launched the five-year programme on Tuesday (3 December), the UN’s International Day of Persons with Disabilities (IDPD).
The launch came days after Disabled People Against Cuts used an emergency meeting in parliament to release a new report on the crisis in independent living, which called for “urgent action” to protect disabled people from the “devastating impact” of the government’s austerity programme.
The announcement of the new grant follows discussions dating back at least 18 months with disabled people’s organisations such as Disability Rights UK (DR UK), and other disability and research organisations, as well as the Office for Disability Issues.
The Research for Impact: Disabled People programme will investigate the level of independent living disabled people are achieving at present, and examine their ideas for how improvements could be made.
BLF – which gives out two-fifths of the money raised for good causes by the National Lottery – is looking for a single organisation to lead the programme.
This lead organisation will be expected to work closely with partners, with disabled people playing key roles in designing and taking part in the research, setting up pilot projects, and spreading awareness of any findings.
BLF hopes the new programme will “inform policy and bring about practical improvements to disabled people’s lives across the UK”.
A BLF spokeswoman said: “As a result of views expressed in the discussion about priority research issues for the programme, we decided that rather than the Big Lottery Fund specifying priorities, they would be determined by disabled people in the first stage of the project, so that the research would be driven by disabled people from the start.”
She added: “Research on disability issues was chosen for funding as although previous research has shown a relationship between disability and poverty there is a lack of research from the point of view of disabled people themselves.
“In addition, their involvement in all aspects of the programme would offer opportunities to challenge stereotypical attitudes as well as enrich the quality of the research.”
Sue Bott, DR UK’s director of development, welcomed the news of the grant, and said her organisation had been discussing the idea with BLF for about 18 months.
She said: “BLF had an idea that they wanted a research programme on disability issues. We got to hear about it and we had a meeting to try to find out what was going on and to make sure that disabled people were leading on this.
“It is a fantastic opportunity to research the issues that are really of concern to disabled people and that makes such a change because normally we haven’t had much say in the subject of the research.”
Bott said DR UK was interested in bidding for the funding, probably in conjunction with a larger research or academic organisation that would administer the funds.
She believes the project has to be led by a disabled people’s organisation. “Getting the research right and asking the right questions has always been at the heart of the disability movement and it is only when we have had the space to ask the right questions and research the things that really matter to us… that we really have been able to make progress.
“Research isn’t just a little extra on the sidelines. It is fundamental to advancing social policy and our causes.”
But she said there were concerns that one of the large, non-user-led disability charities would secure the funding.
She said: “That has been our concern all the way along. What we don’t want is for this very good idea to fail because the big charities muscle in and take over. We are going to do everything we can to avoid that happening.”
DR UK said it had also been working with three other national disability organisations – Inclusion Scotland, Disability Wales and Disability Action in Northern Ireland – and has held round-table meetings funded by the Joseph Rowntree Foundation, to “tease out the issues of concern to disabled people that we would like to see research on”.
The government also welcomed the research funding.
A Department for Work and Pensions (DWP) spokesman said: “The theme of [IDPD] was breaking down the barriers that disabled people face, so it’s fitting that the Big Lottery Fund project has a focus on identifying improvements that can be made based on the experience and insight of disabled people.
“This is also at the heart of the government’s approach set out in our new Fulfilling Potential disability strategy.”
But he added: “Alongside the involvement of disabled people themselves, we would recommend that the research involve multi-disciplinary teams, to reflect the likely complexity of the issues to be explored.
“This could include the research being framed by sociological, psychological, economic and geographical insights.”
Linda Burnip, co-founder of Disabled People Against Cuts, said: “While fully welcoming this very important move by the Big Lottery Fund, especially since the importance of involving disabled people who actually use care and support services is given prominence, we feel that plans to close the Independent Living Fund and introduce a new care bill before this research has actually happened are both premature moves and should be put on hold until the research has been completed.”
5 December 2013
