Today, the report of the steering group I chaired looking at how to implement radical change to care and support for people with learning disabilities is published. You can download a copy from the ACEVO website or from NHS England.
The Winterbourne view scandal, exposed by the BBC’s Panorama programme, shocked the nation. It led to the Government pledge to move all people with learning disabilities and/or autism inappropriately placed in such institutions into community care by June this year. Not only has there been a failure to achieve that movement there are still more people being admitted to such institutions than are being discharged. This has caused anger and frustration.
In the light of the need to achieve progress Simon Stevens, the CEO of NHS England, asked me to consider how we might implement a new national framework, locally delivered, to achieve the growth of community provision needed to move people out of inappropriate institutional care.
Only by a big expansion of community provision can we achieve a move from institution to community. So we need a mandatory national commissioning framework that delivers that expansion as well as pooled budgets, and that focus on the individual’s needs not the system boundaries. The role of the many voluntary and community organisations that both advocate for and provide services with people with learning disabilities and/or autism is crucial to that aim, as are the clinicians, managers and professionals across this service in health and in local councils, who need to work together to achieve a dramatic turn around.
In tackling this challenge it became clear to me that we need both a major expansion of community delivery; driven by co-commissioning but also, crucially, the empowerment of people with learning disabilities. That means a clear and robust Charter of Rights and an effective “Right to Challenge”, backed by strong advocacy and support, that enables citizens to demand change. We also propose that community based providers have the right to propose alternatives to inpatient care from commissioners. We also support a major expansion of the right to request a personal budget; again we believe this underpins an empowerment of the individual citizen to have care and support appropriate to them.
In other words we need to drive change from the top through better commissioning and from the bottom up through empowering people and families to challenge the system.
Underpinning a shift to community provision and away from inappropriate institutional care are exciting proposals for workforce development and a new social finance fund. In developing community provision we need social finance to support capital development so we propose a “life in the community social investment fund” which will support the provision of working capital, a payment for outcomes fund and an investment readiness partnership fund. This is a new proposal but we recognised that developing community provision needs the funding that social finance can provide and I urge Government and NHS England to push ahead with funding to make this happen promptly.
The steering group I chaired was made up of people with learning disabilities, families, clinicians, charity leaders and professionals. They were clear about the crucial importance of workforce and skills development. This must happen alongside developing community facilities. We were particularly impressed with the momentum around the idea of the Academy set out on this Report. We must ensure that momentum for change is built on by all those involved.
And finally, as well as a mandatory national framework for commissioning that is locally delivered we must have active decommissioning of inappropriate institutional care and closures of such institutions. The timetable and process requires further discussion but a 21st-century approach to the care and support of people with learning disabilities cannot be based on long term care in an institution.
In putting together this report I relied on all my colleagues on the steering group, and all those I have met or spoken to, and to those who submitted many comments and documents. Even when critical we recognised this came about through the anger of those who have seen a system fail them.
In 1851, the American physician and philanthropist Samuel Gridley Howe wrote about the “evils” of institutional care. He wrote, “all such institutions are unnatural, undesirable and very liable to abuse. We should have as few of them as possible, and those few should be kept as small as possible .The human family is the unit of society.”
That essential truth underpins our proposals for change and we know they have widespread support . We recognised that as a nation when we closed the old mental health asylums and we must recognise it again here.
I have recommended to the CEO of NHS England that my steering group be brought together again in 6 months to review progress on our recommendations and that we have a formal stock take of actions taken in 12 months time. We can act as a driver for change but clearly it is the institutions themselves that must deliver these recommendations. And deliver them they must.
Over the past few years people with learning disabilities and/or autism and their families have heard much talk but seen too little action. This forms the backdrop to our recommendations and our desire to see urgent action taken now to make a reality of the Winterbourne pledge. They deserve better and this Report provides recommendations on that essential road map for change.
Now it is over to the Government and to NHS England to crack on and implement these recommendations. I believe we may be at a tipping point where action will now ensure we can close institutions and ramp up community provision. My report is no magic wand. Unless these recommendations are implemented we will still be looking at a system that fails some of our most vulnerable citizens. From my discussions with the Care Minister and with Simon Stevens I feel confident we will see progress. But one thing is for sure; if we don’t see change, I shall be there to hold them to account.
Oh Bubb you still don't get it! How long would the right to chalenge take? Would the disabled person languish in some profiteering unit, at risk of neglect and abuse, whilst waiting for the challenge to pogress?
You seem to have missed a vital point - so many of these young people have been kidnapped from loving families - they have homes to go to. Time to send them home now - not in six months, not in twelve months, not in twenty years when some paper pusher finally decides to rubber stamp an old piece of paper. NOW!
Tomorrow we will hear if my son can go to the new home we have found for him. He has ASD and LD and been in various hospitals for eighteen long and wretched months. He was sectioned because his carers got his care wrong and set him up to fail. Whilst in hospital he has had his arm broken, his face mauled and been out through uneccessary medication changes that made him very ill. Attempts have been made to discredit and marginalise us, his family, despite the fact that we know him best, and we only just managed to keep him out of a secure hospital because we took him out every day to keep him sane. You can't beat about the bush any more. We need decisive action not weasly words. We need a proper timetable, not a review in a year's time when you'll come up with some more weasly words. These are PEOPLE. They have LIVES. They need CHANGE and they need it TODAY.
There are many good words in there, BUT...
All the policies, action plans etc are just more empty rhetoric without the mechanism for accountability.
It's very revealing that in the 36 pages of text, only the 3 final paragraphs mention holding people to account, and these are seemingly an afterthought. Without real, accessible redress, people with LD and/or autism and their families and carers are still disempowered.
What a missed opportunity.
cuts to social care are building a huge time bomb of autistic young adults who will go into crisis mode due to inappropriate support. Money needs to be invested in suitable accommodation, trained staff and appropriate day placements for these young people.
I would like to speak with you Sir Stephen. CQC never wanted to listen. How can I best contact you?
Great idea fallingondeafears! Bubb should meet with all of us so we can make sure he fully understands ALL the issues here - more issues than he knows!
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