Four years after the 2011 Winterbourne View abuse scandal, the government is soon to publish its response to the Green Paper on transforming care for people with learning disabilities, whilst I understand NHS England will be publishing updated plans next month as part of its Transforming Care work. Meanwhile, the latest statistics show that the number of people with learning disabilities in hospitals and other institutions remains almost entirely unchanged. Some people left, but just as many were admitted into the vacant beds.
There is anxiety about closing these facilities, but the figures strongly suggest that as long as they exist, with their vacant beds needing filling to ensure that they remain financially viable, people will continue to be referred into them, however much success there is in helping people to leave.
The inertia is embarrassing for government and its partners at a national level. We need a complete rethink of the effectiveness of the ‘sector led improvement’ approach, when it comes to tackling changes which require parts of the established sector to close themselves down. However, the relevant decisions are taken locally, by clinicians and commissioners, and it is unlikely that any of them will be held accountable for the failure to achieve change. How long will we continue to see that lack of progress without concluding that the local decision making structures are the wrong ones, and transfer that money and power elsewhere?
People with learning disabilities were unheard and hidden away in Winterbourne View. They continued to be ignored in the improvement work which followed. Thousands of meetings were held, but most of them without people with learning disabilities and their families. Thousands of pages were produced, most of it gobbledegook to citizens and ignored by the professionals it was intended to guide.
One of the many frustrating aspects of the post Winterbourne work is the ready availability of community-based alternatives such as Shared Lives which help people to live better lives at lower cost, but of which professionals and families remain largely unaware. So what changes should the new plans include, if they want to end five years of failure? Here are five, based on the views I heard in the few meetings which did involve people with learning disabilities and their families:
1. It’s only through people having the chance to see and try out new models that we can challenge entrenched views and fears. We need to invest in a series of peer education programmes for clinicians, parents and people with learning disabilities. For each group, their peers are best placed to help them to see and explore other models. Where people want to try out new models, they need to be able to do so with their current arrangement held open for them in case it doesn’t work. This would all cost money, but there is a strong invest to save case, which would also lend itself to the use of social investment, paid back through the significant medium/long term savings.
2. We need to reward care providers for progress towards independence and penalise lack of progress. The current financial incentives are to keep people in the same expensive dead ends for as long as possible.
3. Money is not unrelated to power. We need to give individuals and families clearer rights to personal (health) budget control and a new right to challenge for control of resources where they and their advocates can put together a plan at the same or lower cost. At present, families are told there’s no resources to help them cope, then when that family care arrangement collapses, suddenly there are thousands of pounds a week for providers. Commissioners should have to demonstrate that they have talked to individuals and families about what they could do with any new money allocated, before committing that spend to institutional care.
4. Commissioners must be obliged to make themselves regularly accountable to local people with learning disability and families, through a new system of local scrutiny boards led by self-advocacy organisations. This would replace (or in some areas enhance) existing Learning disability Partnership Boards with a body with teeth and a new right to challenge commissioners for control of resources (building on the Localism Act which introduced a right to challenge service provision, but not commissioning). These boards could feed in to the national forum, which currently suffers from a lack of consistent local infrastructure upon which to draw.
5 People with learning disabilities from CHANGE and other self-advocacy groups made the observation that small buildings can be institutions too, because it what happens inside the building that matter. We need a new ‘institution test’ for services in this field, which could be carried out by (trained and paid) people with learning disabilities on behalf of care inspectors, CQC. Services should be obliged to demonstrate that they are not institutionalised and actively reducing institutional practice, attitudes and behaviour.