Homes not hospitals

Last Friday NHS England released its long-awaited plan, Building the Right Support, to close inpatient facilities for people with learning disabilities and/or autism and develop the services needed in the community. On the same day, the Equality and Human Rights Commission (EHRC) published Is Britain Fairer? The state of equality and human rights 2015.

A search through the EHRC report shows that people with learning disabilities are a group of people whose rights to dignity, respect and fairness are not being protected, particularly in areas such as employment, health, life expectancy, access to legal advice and for those people with learning disabilities who are in prisons. The EHRC’s 2015 report is a follow up from the first report in 2010 with the aim of assessing whether our society is fairer today than it was five years ago.

Those five years have been a period of huge concern about people with learning disabilities and/or autism being placed in inappropriate settings for too long and a long distance from their family and home. These years have included the abuse at Winterbourne View, deaths in inpatient units and mainstream hospitals due to a lack of appropriate care as well as significant reductions in community-based services.

Building the Right Support moves the transforming care debate from one about how to close assessment and treatment units and provide alternative services to one that acknowledges that the situation will not move forward without achieving broader change in people’s lives. The nine-point plan includes addressing people with learning disabilities having ‘good and meaningful everyday lives’; choice and control over their health and care needs; a choice of housing and good care; and support from mainstream NHS services.

In addition to these aspects of life that everyone, with or without a learning disability needs, the plan includes 24/7 access to specialist health and social care support from specialist community teams and ensuring high-quality assessment and treatment in hospital settings.

Time will tell whether this is a plan that will achieve the outcomes it sets out, plus more. But one aspect of the development of the national plan that gives cause for optimism is that people with learning disabilities and family carers with experience of in-patient services have helped to shape it, often using their experiences from the Care and Treatment reviews that have been carried out over the past year.

The continuation and development of this involvement is the piece of the jigsaw that is going to make things work: they are the people who are 'in it for life' and want and need to find solutions so that people lead a good life close to the people who are important to them. This is a time of huge uncertainty and change in provider services and commissioning. The knowledge of people with learning disabilities and family carers about what works and what doesn’t is essential to help keep the plan on track and challenge nationally and locally for it to develop further.

As someone who remembers the closure of long-stay hospitals in the 1990s, alongside the development of some innovative approaches in local communities, there is a welcome mention of 'intensive community support teams' and 'pioneering housing options'. This should help people to remain in their own houses of choice and in their local communities alongside natural support networks. However, for this to work there must be a greater investment in local authorities to ensure high-quality social care and to create safe and supportive local communities.

But Building the Right Support could have gone further by taking up the challenge described in the EHRC report as well, and emphasising people’s rights to equal opportunities and participation in society. The plan only briefly mentions the importance of the right support before people reach adulthood, yet we know the importance of getting things right from birth and supporting the whole family, otherwise people will continue to be failed.

Greater investment in advocacy as well as opportunities for leadership roles for people with learning disabilities and family carers are key to achieving the right kind of change. People who support or work with people with learning disabilities need to be trained and expected to embrace a model of working so that people get real control in their lives.

However, Building the Right Support is an important step to achieving change in people’s lives and one that can be built on and pushed forward by everyone in the coming years.