‘The learning disability green paper shows promise but is only part of the picture’

by Sue Turner, Learning disability lead at the National Development Team for Inclusion

The launch of the Department of Health’s ‘no voice unheard, no right ignored’ consultation raises important questions regarding how to strengthen the rights of people with learning disabilities, including those who may also have mental health problems and autism.

In his introduction to the consultation, Norman Lamb shows an important understanding of why change hasn’t happened post-Winterbourne View and the effect this has had on the lives of people with learning disabilities and their families.

Thanks to the tireless campaigning of many families, including the Justice for LB team, it finally recognises that people should be in charge of their own lives, live in the community and have the right support to do so. And crucially it is asking those affected for their views on how this should happen. We can and should encourage and support as many people as possible to take part in the consultation and have their voice heard. The easy read version is here.

Only part of the picture

Firstly it is essential we realise that this green paper is focusing on aspects of the system that are immediately concerned with admission to, life in, and discharge from, institutional type of services. The existing Valuing People and personalisation policies that map out a whole life agenda for people and families have to be seen and understood as the continuing policy aspiration for wider aspects of people’s lives. Without that, changes around institutional admission will fail.

As we all know, the right community provision needs to be in place to reduce inpatient admissions. But the history of the last few years shows us that this will only succeed if it is led by genuine coproduction with people with learning disabilities and families, involves providers who are seeking to develop innovative, imaginative person centred supports and has commissioners with the time, skills and budget for real market development. One of the stated aims is for discharge to be planned at the time of admission so it will take place as soon as possible. But unless there are the right services and supports in place to allow the person to be discharged, this is an empty gesture.

Involving people and families

The first part of getting community provision right is starting by involving people with learning disabilities and families at a policy and individual level. Robust self-advocacy and family groups are ‘critical’ for developing regional, local and individual plans, and for monitoring their effectiveness. It is positive that the green paper recognises this but we know that these have been weakened in the last few years. Partnership boards in some areas have disappeared, and regional structures are struggling to survive.

People taking a lead role in decisions about their own care and support is essential. Listening to individuals and families, some talk about the difficulty in making a decision when things have reached crisis point. People need information in advance – otherwise how do they know whether to accept or challenge statements about ‘no closer or community based alternative’?

We need to be more willing to identify people at risk and do preparation work with them to understand their rights and options available before taking decisions that are then respected and acted on in times of crisis. A true person-centred approach where people, families and agencies work together from the start to have a joint vision of what a good life looks like for each individual is the essential starting point. As Gavin Harding, MBE, said in his introduction: “We should also not forget that there are also children and young people in inpatient units too. We have to change the system for everyone from 0 to 100 years old.”

Commissioners must step up to the plate

The second key element is local authorities and clinical commissioning groups working together to identify need, develop and commission appropriate support. And this is what hasn’t happened since the Winterbourne View scandal, despite enormous effort from some in the sector and the ongoing reminders offered by recent poor CQC assessments. Will we see the needed national leadership to ensure action, check progress and address the inevitable funding conflicts? Since this consultation will not finish until after the general election it is impossible to tell.

Providers are the final key part of the mix. The consultation proposes self-advocates and families should be engaged in the governance of providers. This is a good proposal but it does not address the issue that we do not have a culture where self-advocacy is valued and supported by all. The real question here is about what actual power these groups have? We need a way of ensuring local areas understand and strengthen self-advocacy and partnership boards. At local and national levels we also need to be clearer about the quality of providers, moving from a system where, too often, providers lead decision making about what services are available and where.

This consultation paper goes some way in ensuring the voices of people and their families are heard and acted upon. But it is reliant on the ability of the wider system, including commissioners and providers effectively implementing the Care Act, to provide the necessary infrastructure to enable people to live fulfilling, independent lives. We have to remember that it is only addressing a part of the system and the Valuing People policy and vision has to continue and underpin these proposals.