Social care - a users' wish list

Users’ views captured in a new report say that social care reform could go much further than current Government proposals. Co-author Professor Peter Beresford explains

All current Government talk is of reforming social care to put disabled people and other service users “at the centre”. Yet the lead on “personalisation” and “self-directed support” has largely come from non-disabled “experts”, making it difficult for disabled people to get their views heard, let alone included.

Now findings from a national consultation event jointly organised by the Commission for Social Care Inspection and Brunel University challenges this. It brought together policymakers and a very wide range of disabled people – this included people with physical and sensory impairments, mental health service users, people with learning difficulties, older disabled people and people who identified as “neurologically diverse”.

Social care is a residual system based on means-testing and professionally defined needs-assessment. Crucially this user-led consultation shows that disabled people want a universalist service, everyone is entitled to, free at the point of delivery, like the NHS, not one rationed by charges and eligibility criteria. They want services based on the values of independent living and people having rights. They want services that see service users as whole people; all the services people need linked up – housing, health, benefits, education, leisure and so on. They call for better organisations to provide support – less bureaucratic, more accessible and not concerned with profit-making. The kind of social care people want has much greater user involvement; a better workforce with improved conditions and training; better services and, of course, improved funding generally to make all this possible.

While Government talks of social care’s “total transformation” in three years, disabled people have realistic suggestions to make about what’s really needed to achieve this. Social care will have to become more attractive to gain more support. More individual budgets and direct payments will help here. Its status and profile will have to be raised. There needs to be more joined up campaigning and lobbying in which service users are centrally involved.

The media must play a more active role in helping people understand social care issues, by raising its profile while no longer stigmatising social care service users. This links with the key need to challenge the stigma now faced by service users and indeed often by those working with them, which has meant that they are now frequently not seen as valuable or worthwhile. Last but not least, user controlled organisations must have a stronger voice to bring about change with increased and more secure funding. This user-led programme for change offers a real prospect of achieving rights-based support for disabled people in the future.

• To read Transforming Social Care: Changing the future together, by Peter Beresford and Frances Hasler, visit www.shapingourlives.org.uk/consultations.html