Many people with intellectual disability and/or autism still remain warehoused in inpatient units that they do not need to be in while their lives tick past, says Keri-Michèle Lodge

For people in England, May 2021 has brought a welcome step towards “normal” life, with many of us enjoying the greater freedoms to see our families and friends, and to do the things we enjoy in the community. Sadly, this remains a distant dream for many people with a learning disability (also known as intellectual disability) and/or autism, who are forced to live apart from wider society.

This month also marks the 10th anniversary of the broadcast of an undercover BBC documentary revealing shocking scenes at Winterbourne View, a private hospital where service users with intellectual disability and/or autism were subjected to neglect and verbal and physical abuse by staff paid to care for them. Winterbourne View and the subsequent exposure of abuse at the privately run but NHS funded Whorlton Hall are echoes of the shameful mistreatment of patients at Ely Hospital reported back in 1969, which begs the question, how many more scandals will it take for things to change?

In response to Winterbourne View, the government pledged to transform care to ensure that people with intellectual disability and/or autism live in homes, not hospitals. Plans were made to close beds in assessment and treatment units, the inpatient settings where people with intellectual disability and/or autism may receive care under the provisions of the Mental Health Act (1983). Promises were made to prevent admissions to these units, and to discharge people back into the community with appropriate housing and effective support.  

A decade on, little has changed. At the end of March 2021, there were still 2035 children, young people, and adults with intellectual disability and/or autism in inpatient mental health beds in England, with an average length of stay of 5.6 years. Eighty five of these people were ready for discharge, but could not leave because of a lack of adequate social care and housing support in the community. Too many people remain warehoused in inpatient units that they do not need to be in while their lives tick past. Worse still are the risks of physical restraint, chemical restraint with inappropriate use of psychotropic medication, or seclusion that people in these units face, and the violation of their human rights. The danger of abusive cultures developing heightened during the covid-19 pandemic lockdown, when visits from family, friends, and the Care Quality Commission stopped.    

When people are eventually discharged from inpatient care, they can find themselves “moving on” to care homes that house often up to seven other people with intellectual disability and/or autism, with staff who may have little, or sometimes no, experience of the complex task of providing care to them. The individual is simply moved from one institution to another, albeit smaller, institution where the bricks and mortar are in the community, but the person is not; they remain separated from the rest of society.    

Unlocking this situation is a challenge that requires cross-governmental cooperation. It will also mean going back to basics. First, we need to address the segregation that begins in childhood, when people with an intellectual disability and/or autism may be educated in “special schools” away from children in the general population. This starts a process of “othering,” limiting opportunities for people in the general population to see that individuals with intellectual disability and/or autism are people too, with feelings, wishes, and dreams, capable of leading meaningful lives. Viewing people with intellectual disability and/or autism as fully realised individuals in their own right is particularly important for those who work in health and social care so that our unconscious biases can be challenged. Indeed, the NHS should set an example by providing people with intellectual disability and/or autism opportunities to contribute to their community through paid employment.

Secondly, we need to collaborate with people with intellectual disability and/or autism and their families and supporters to design health and social care services that will support them to live in the community. In line with this, there needs to be a focus on ensuring that carers employed by social care providers have the necessary training, skills, and supervision for the complex task of providing direct care to people with intellectual disability and/or autism. And we as healthcare professionals have a crucial role to play in listening to the concerns of families and individuals, and speaking out when care providers are inadequate.

Thirdly, there needs to be a commitment to delivering on the long neglected promise of timely and effective community based support for people with intellectual disability and/or autism, and, crucially, accountability for failures to deliver. Proposals to remove intellectual disability and autism from the Mental Health Act provide a lever for change, making it clear that admissions to assessment and treatment units can no longer be a fallback position to cover for gaps in social care provision. However, specialist commissioners with lived experience of intellectual disability and/or autism will be essential to driving through the changes across health and social care that are needed. Adequate funding and resources must also be ringfenced for this task.

We cannot continue to stand by while individuals with intellectual disability and/or autism are failed by health and social care. As our health and social care services begin the difficult task of recovering from the challenges of lockdown, we must not lose sight of this issue. It’s time for us to realise the long held ambition of people with intellectual disability and/or autism to have their human rights upheld, to live as part of their community, and to be valued as equal citizens whose lives matter.

Keri-Michèle Lodge is a consultant in psychiatry of intellectual disability at Leeds and York Partnership NHS Foundation Trust. 

I have read and understood BMJ policy on declaration of interests and declare the following interests: sibling carer for adult with learning disability.