There are currently two thousand people with autism or a learning disability detained in secure inpatient settings, the majority of whom could be managed in the community according to evidence presented at a Health and Social Care Committee inquiry.
The inquiry was to examine the limited progress in improving the way autistic people and individuals with learning disabilities are treated and focused on the use of restraint and “sectioning”. It also considered issues around seclusion, taking into account criticisms regarding human rights.
Alexis Quinn, who is diagnosed with autism and has spoken publicly of her poor experiences of being held in the secure estate, appeared before MPs at the first session.
She spoke about spending three years in various mental health facilities where she was not “treated quite as a human” and was constantly told she “needed to get better”.
She told the committee: “I reflect on my time in the system and of being transported in cages, handcuffed with my legs tied together in safe straps that didn’t feel very safe. I reflect on closed doors, being hundreds of miles away from home, worried about when the next sensory overload would come triggered by a chaotic sensory charged environment that I had no choice to be in. It was always met by six to ten men pinning me to the floor, pulling my pants down and injecting me with sedatives and then secluding me.
‘I reflect on my time in long-term segregation when I was woken by a torch shone into my window every hour. I reflect on how the system that doesn’t care for autistic people, silences you and makes you afraid and that fear stays with you. You always feel one meltdown away from an admission.”
When asked what needed to change, Alexis said there needed to be a culture and paradigm shift as the current model of care was wrong. It was too polarised because if a person in crisis couldn’t manage in the community, they are sent to hospital.
She added that there also needs to be a capability and rights based approach to help people in crisis and that includes access to crisis housing, trauma informed care, trauma therapy and it needed a workforce in place to do all that – providers that put people first and not just say that they do.
The second session heard evidence from Dan Scorer, Head of Policy, Public Affairs, Information and Advice at Mencap; Vivien Cooper, Founder at Challenging Behaviour Foundation; Ivan Olbrechts, Representative Body Member at Learning Disability England and Julie Newcombe, Co-Founder of Rightful Lives.
They were asked whether the 2,000 people with autism and/or a learning disability in 96 locked inpatient units across England needed to be there and whether they could be moved to a community-based system.
Julie Newcombe said that the vast majority could be cared for in the community and there is a lot of evidence out there to support that. She said: “We need to put the person at the centre and see them as people with potential rather than their risk profile as these people can lead meaningful lives.
“There is a dearth of the right kind of community care in place. The priority has to be getting the right care in place, the right values-led organisations leading it, true leadership from the top and at local level, and there needs to be ring-fenced funding in place to make it happen.”
Dan Scorer told the committee that inpatient settings were not suited to people with autism and not only were they not meeting people’s needs but they were extremely damaging.
He added: “We need early interventions and support for people and their families, so we don’t get anywhere near crisis situations. We need both a strategy of investing in the services and support to make sure a new generation of people don’t go into these settings as well as creating the housing and support for people to return to the community.
“The history of missed targets and broken promises has left people with learning disabilities, autism and their families deeply worried that the transformation is not going to happen at the pace that is needed. Some areas have these services, and some do not.”
Ivor Olbrechts said another issue is the distance from home that some people are sent meaning families struggle to maintain contact. He said: “It is never in someone’s best interests to be a long way from their families. Everyone here is saying the same thing – provision needs to be closer to people’s homes or it is not community-based care.”
Vivien Cooper said there is an opportunity to provide early intervention principles for people with learning disabilities. She added: “Academics say that you can identify at the age of three years those children who are likely to develop difficult behaviours. So, we have an opportunity to provide the right support for children and families. But in practice, the behaviour escalates, and the approach is often one of containment rather than addressing what they are telling us.
“And they are telling us that there is an unmet need and we need to meet that need. My son used to bang his head and instead of understanding the reason behind the behaviour we tried to stop him.”
The inquiry will consider what the new plans to reform mental health legislation will mean for autistic people and individuals with learning disabilities. A white paper on reforming the Mental Health Act was published last month.
A proposed change to this ‘landmark reform’ is the improvement in access to community-based mental health support and crisis care to avoid preventable detentions under the Act. Questions remain around what funding is available for more significant community-based activity.
Health and Social Care Committee Chair Jeremy Hunt MP said the aim of the inquiry would be to shine a light on these current issues and he hoped that proposed changes to mental health legislation will result in much needed change.
He said: “Autistic people and those with learning disabilities have been disproportionately affected by the pandemic but many issues around their care predate it.
“10 years on from Winterbourne View we have still not transferred everyone that should be into proper community care and there are still serious human rights issues around the use of restraint and seclusion.”
