Research is underway!

It's always exciting when a research project gets beyond planning stage, and into practical data collection.  This month, we  have begun to interview our first batch of disabled people who employ personal assistants.  We are starting with up to 15 people who receive funding through the Independent Living Fund, and as well as exploring their PA relationships, we are also asking about their funding situation, and their thoughts about the future.  The first interview took a mammoth four hours!  We are so grateful to all the disabled people who are willing to share their lives with  us.  Tom Porter has conducted three interviews so far, which means 27 more disabled participants to go, as well as 30 personal assistants.  Already, we are fascinated by our data, and look forward to reporting further.

We've also featured in the media, specifically Tom Shakespeare has contributed to The Download, Disability Now's legendary podcast.  Meanwhile, Andrea Stockl has been talking about the project at a symposium in Vienna, so the word is spreading far and wide.

Charlie and Hayley

Sometimes a picture is worth a thousand words.  Charlie is a man with learning difficulties who I have known for more than 25 years.  His mother has campaigned for him to have personal assistance and to live in his own home, supported by several workers during the week.  She recently sent us this picture of Charlie and his worker Hayley, which we think captures so much of what we are interested in during this research project: relationship, emotion and empowerment.

The end of an era?

The Independent Living Fund (ILF) is set to close on the 30^th June. For over 25 years, the ILF has enabled disabled people to realise human and civil rights which many non-disabled people take for granted. Over 19,000 disabled people receive ILF payments (December 2014 figures). For these people, the closure of the ILF represents a seismic shift in the way their entitlements are organised: support packages are likely to change, new regulations concerning the use of direct payments will come into force, and the meaning and practice of personal assistance will evolve.

The ILF budget is to be transferred to local authorities, however only a small number of local authorities plan to ring fence this budget for existing ILF recipients (or even for adult social care).  There is current considerable pressure on adult social care, due to the ongoing programme of public expenditure cuts. There are concerns about the implications of the ILF transition for independent living.

We believe it is important to understand the experiences of ILF recipients as they transfer to local authority funding.  By adjusting our data collection timetable slightly, we can use our first cohort of qualitative interviews to do just that. As well as our PA relationships themes, we will also investigate whether or not local authorities are supporting ILF recipients during their transfer; interviews will explore ILF recipient’s hopes and fears regarding self-directed independent living; we will also document how local authority funding and regulation shape personal assistance.   

Once this initial set of 15 interviews has been completed, we will disseminate key findings to academic and policy professionals, members of the disabled community, and those working in personal assistance. In June, we will hold a briefing in Westminster for Parliamentarians and civil servants to highlight our initial findings about the impact of ILF closure, and we will also disseminate to the media. 

As a team of disabled and non-disabled researchers we are committed to the realisation of disability rights – such as Article 19 of the UN Convention on the Rights of Persons with Disabilities, the right to live independently and be included in the community. We are also committed to the principle of objective inquiry.  The phasing out of the ILF has generated huge concern in the disability community. Yet the decision to close the Fund – and subsequent legal challenges – have received scant attention in the mainstream media. We will work hard to understand the consequences of the closure, and to share this understanding widely.