Aims of the project:

Everyone requires support from other people in order to manage different aspects of everyday life. However, people with learning disabilities living in England do not always get the social care or support they require, or they don’t have control over what or how much support they receive. 

Some people with learning disabilities receive funding from the Government to pay for social care support, whilst others have to rely on unfunded support. This support would be something which is not paid for by government-funded social care, or by the local authority. 

We want to find out what it is like for people with learning disabilities who rely on unfunded support. We also want to find out what it is like for the family, friends or other people who support people with learning disabilities without financial recognition.

The project has 6 stages:

1. Ethical review and preparation

2. Undertaking a review of the literature, and building accessible documentation and information, learning from one another, and building interview questions in preparation for stage 3.

3. Interviewing: we will be interviewing 24 people with learning disabilities and 24 people who provide (unpaid) care for people with learning disabilities

4. Cost replacement analysis: we will use the information from the interviews and knowledge about how much support costs when it is formally paid for to estimate how much money the informal support would cost if it were formally paid for.

5. Analysis: we will spend time analysing the interview conversations to build a set of themes which we feel best sum up and make sense of what people talked about.

6. Dissemination: we will share the outcomes of the research with different audiences.

Funding and partners:

The 22-month project is funded by the National Institute for Health and Care Research (Research for Patient Benefit) (NIHR, RfPB). It involves researchers from the University of Sheffield, UK; Sunderland People First and Sheffield Voices, which are learning disability self-advocacy organisations, Manchester Metropolitan University, UK; the University of York, UK; SIBS, the charity for sisters and brothers of disabled people; and RosSenCis Productions, a creative arts research and production company.