Use of data on outcomes and quality of services in decision-making about services for people with intellectual disabilities and autism

Background

User choice and personalisation have been at the centre of government policy in health and social care in the UK. The government document Putting people first, published in 2008, made a commitment to the transformation and personalisation of social care services. In 2010, the document A vision for adult social care set out to provide personal budgets for everyone, including people with intellectual disabilities or autism, eligible for on‐going social care by April 2013.

The provision and use of information on quality of services is central to informed decision-making about individualised supports and user choice. Since 2000, England has had a system of inspection and registration of social care settings currently overseen by the Care Quality Commission (CQC). In the past, star ratings were available for both care home providers and domiciliary care providers, as well as for local authorities. The star ratings have been dropped, and under CQC the regulatory information available is about whether service providers meet essential standards, with inspection reports published on the CQC website. This information is thus potentially available for all to consult and there are moves by providers themselves to provide information about customer views and quality. However, little is known about how people choose support and accommodation services, and whether they use publicly-available outcomes or quality data (or any other source of information about the quality of services) in making a decision about services.

Aims

This study aims to explore how information on the quality and outcomes of services is used in decision-making about accommodation and support services, including support provided in the person’s own or the family home (e.g. supported living services), by people with intellectual disabilities or autism, their families, care managers and commissioners in England. The aims of the project are to:

  • Review the role of quality and outcomes information on user choice in accommodation and support services
  • Explore the types and sources of information available about the quality and the outcomes of services to facilitate user choice
  • Investigate how quality information is used in the decision‐making process about accommodation or personal supports

Methods

The project comprises three phases. Phase 1 consists of a systematic review of UK and international literature on the use of quality and outcomes information in the choice of social and health care services by people with disabilities and long‐term conditions. This will be followed by a review of publicly-available information, including information provided by advocacy and independent organisations, on the quality of accommodation and supported living services in England, according to a set of pre‐defined criteria informed by the literature review. This phase will also involve gaining ethical and RGF approval.

Phase 2 will consist of semi‐structured face‐to‐face interviews with approximately 30 people in the South‐East of England with intellectual disabilities or autism and, where possible, their families or advocates, their care manager and the commissioner responsible for purchasing their care package. The aim of these interviews is to explore the decision‐making processes and the role information on outcomes or quality of services played in those processes. Interviews will also explore awareness of available sources of information and the extent to which these were found to be useful in the decision‐making process, and the need for information on quality (e.g. what and how quality information should be provided in order to be useful for people). The sample will include those in residential services, those in supported living and those receiving a personal budget/self‐directed support. The interviews will include both people who are more able and can be interviewed themselves and others with severe and profound intellectual disabilities, whose family members and care managers will be the main source of information.

In Phase 3, all commissioners responsible for commissioning services for people with learning disabilities or autism and a sample of care managers in the South East of England will be contacted and a brief telephone interview conducted to look at their use of information about quality and outcomes in decisions about people’s care packages and also whether to continue to use providers. The questions for these interviews will be designed following the Phase 2 interviews, and responses will be analysed thematically.

Timings and Outputs

Phase 1

Conduct reviews and seek ethical approval; recruit   participants for the interviews January to April 2012

Phase 2

Conduct the interviews, analyse the data May to October 2012

Phase 3

Design telephone interview

Conduct telephone interviews

Analyse data from interviews

October 2012

November 2012 to January 2013

October 2012 to April 2013

Write up

April to June 2013.

Outputs will include peer‐reviewed articles, summary ‘findings’ and a report that will help to promote the provision and use of quality and outcomes information in the choice of accommodation and support services for people with intellectual disabilities and autism.

Research Team

Julie Beadle‐Brown, Agnes Turnpenny, Lisa Richardson, Beckie Whelton