Dear Mr Javid,
I am writing, in this open letter, to express my grave and continuing concern over the care and support for people who have a learning disability and autistic people detained in inpatient care or at risk of such detention.
According to latest NHS Assuring Transformation data, there were more than 2,000 people with a learning disability in inpatient settings, most of whom have been locked up in these long-stay hospitals for at least two years.
I am sure you will be aware of the recent Norfolk Safeguarding Adults Board report on the deaths of people living at Cawston Park, exposing the serious failings in care that occurred there. The deaths of those living at Cawston Park – Joanna, Jon and Ben – have incited outrage and sadness. Frustratingly, these failings are only the most recent examples of an enduring and long recognised problem arising in institutionalised models of care for people who have a learning disability and autism. This includes failings seen at Whorlton Hall (2019) and Winterbourne View (2011) – to name only a few of the most widely known scandals that have occurred in recent years.
Entrenched problem
I stress the importance of these matters at this point in time particularly, as the government embarks on the reform agenda for adult social care. The entrenched problem of long-term detention of people who have a learning disability and autism is principally a result of the wider issues within the social care system that mean high-quality community support is not available to people when they need it.
Dimensions is one of many social care providers that have been working for many years to provide an alternative model – supporting people in their own homes, where they can be close to family and friends and be active citizens in their own communities. When done well, with appropriate involvement and ambition from all those professionals and family members around the person, this approach works. I enclose links to some stories to underline this – those of Susan, Karen and Indy, people we have supported out of inpatient settings who are now thriving and enjoying an ordinary life.
I am prompted to write to you as it has now been over three months since the health and social care select committee published its report on the Treatment of people who have a learning disability and autism. I attach Dimensions’ response to the committee report.
Disappointing
It is disappointing that, as yet, the government has not responded to the committee’s findings and recommendations. The report sets out the primary challenges that lead to the inappropriate detention of people who have a learning disability and autism, as well as offering clear solutions. I know I am not alone in stressing that the time for reviews and reflection around this problem has passed.
It is now time for action, and I urge the Department of Health and Social Care to take steps to implement the necessary changes, starting with a response to the committee’s report so that people who have a learning disability and autism are no longer inappropriately detained in inpatient care. These changes include investing in the right support so that people can live better lives and addressing the critical shortage of community-based crisis resources to prevent admission in the first place.
It is my hope that the measures set out in the forthcoming adult social care white paper will consider the needs of people who have a learning disability and autism and their families, and specifically address improvements to care and support for people who are currently detained in inpatient settings or who are at risk of being so.
An end to failings
Dimensions will continue to support, wherever we can, the development of such policies and to inform the department’s work on these issues. We stand alongside many others – families, self-advocates, campaigners and community providers – who desperately want to see an end to the failings that have been exposed again and again in inpatient settings.
Since the abuse at Winterbourne View came to light in 2011, in my role as chief executive of one of the country’s largest support providers for people with learning disabilities and autism, I have corresponded with six successive ministers and two secretaries of state with the aim of supporting progress on this issue, but it often appears as though very little has changed. I hope that in your tenure as secretary of state for health and social care, you will oversee the fundamental changes needed to ensure more people who have a learning disability and more autistic people can lead better lives.
Yours sincerely,
Steve Scown
Chief executive, Dimensions
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Please every child has the right to be supported and to be kept safe in a setting … safeguarding should be top priority for autistic children as parents we go above and beyond to help support and care for our children and if we didn’t well yeah our children would be removed from us . We put faith and trust in so called lead professionals which are suppose to know and understand and yet only a few can say they actually have experience aswell as knowledge it’s time for change
This is something I have been campaigning for now for some time since my own child was removed from my care,one recommendation i would like to make is if a child with autism is removed and placed in a private home for children,assessed and then given treatment in any form be it CBT, EMDR, Counselling etc then it should be named as an Assessment Treatment Unit and not go under the guise of a children’s home. When a child enters they are assessed,given treatments such as EMDR or CBT but they call themselves a children’s home not ATU
Hi. I have autism, and I live in a supported-living building in my own flat. I’d much rather stay here, than in a psychiatric ward, where you don’t know when you’ll be allowed to go home again. It’s very difficult to get permission to return home again, once you enter a psychiatric hospital. The staff in them have to triple-check that you’ve recovered. I have witnessed in many social care settings, some autistic people who I’ve gotten to know, have been ill-treated by certain members of care staff. Some of those staff were too quick to jump to their own conclusions that “Well, i just reckon that he/she just likes being violent and attention seeking!”. I don’t take well to conversation like that. It’s very judgemental. I kept my mouth shut, though. As I didn’t want to cause a scene. I’m not really that sure what the hell is going on with social care and autism. Ha ha.
I’m sick of staff trying to “normalize” me. God help me if I buy a rainbow christmas tree for my supported-living flat, instead of a plain green one. God help me if I want to buy anything brightly-coloured because it cheers me up. I don’t like people deciding for me. Why do this? I wanted to buy the small blue one, but, oh, never mind, because it’s not what the support staff would want. Yet they tell you to express yourself. Can’t have it both ways. ?
For this agenda to move forward, the government needs to be clear on who funds what. All this joint crap helps no-one and just adds to the delay.