Trapped in hospital: the community housing scandal and learning disability

A lack of suitable supportive housing for people with a learning disability has been a key factor in one of the biggest health and social care scandals of the past two decades. Across England, there are currently more than 2,000 autistic people and people with learning disabilities stuck in secure hospitals because the services they need are not available in their local communities.

These mental health inpatient settings, known as Assessment and Treatment Units (ATUs), were designed to be short-term placements used as a last resort when a family hits a crisis or community services break down and cannot meet a person’s needs. However, the reality is that many patients end up detained under the Mental Health Act, with the average length of stay often upwards of five years.

In addition, many are placed miles away from family and friends and in settings that are unsuitable to their needs. In the past decade, there have also been increasing reports of abuse, overmedication, seclusion, and the use of unnecessary restraint in these units.

Campaigners have long called for local expertise, support, and services to be developed for autistic people and people with learning disabilities to prevent admission in the first place. They say forcing them into ATUs far from home perpetuates a “level of discrimination that we do not expect and would not expect other people in society to bear”.

Despite repeated calls for solutions, little progress has been made in ensuring people with behaviour that challenges are supported at home rather than in secure accommodation.

Why is community housing a better option than ATUs?

There are many reasons why ATUs are not appropriate settings for autistic people and people with learning disabilities due to being highly restrictive and sensory-heavy environments that often exacerbate and do not address the behaviours that led the person to be there in the first place.

According to the Challenging Behaviour Foundation, people shouldn’t need to go into an inpatient unit unless there is a specific reason why they need some inpatient assessment and/or treatment for a short period, such as when someone has a complex mental health condition. If this is the case, then the unit should be small and close to home. The facility should also provide specialist assessment of the individuals’ needs and treatment of those needs, and enable the person to return to their local community as soon as possible.¹

It adds that most people with a learning disability should never need to go into a unit. They should be able to access the right support in their local area, and the necessary expertise should be brought to them.

Leo Andrade fought for six years to get her son Stephen out of an ATU and said that the care he received was inhumane. She added: “This is a crime against humanity and a dirty secret in this country. Staff struggled to cope with and understand Stephen’s needs; he was constantly overmedicated. Every time we visited him, it was heartbreaking to have to leave Stephen there. He was covered in bruises and gashes from where he had hit himself from being anxious.

“The long-term effects of sedation mean that Stephen has now lost the little speech he had. Stephen was bitten and received injuries, including a broken clavicle that went untreated for three weeks.

“After six years, Stephen finally came home and was overwhelmed with anxiety. He has panic attacks, and will only access the bedroom and bathroom and still wants to sleep on the floor as this is how he slept at the ATU. After six months of being out, we are seeing great improvement, but he is still overly medicated because the doctors here are not sure what to do about it.”

Why do people get stuck in hospital?

Numerous research and policy papers have identified issues such as the patient’s level of need, funding and availability of suitable post‐hospital placements as potential reasons for delays.

Care provider Dimensions says that the central issue in moving people from ATUs is a commissioner’s ability to take a long view, especially about funding. People may come out of the hospital with high costs. Sometimes there won’t be an instant saving, but with the proper support in the right home, costs can be reduced significantly over the first year or two.

Yet, recent research from ITV News and Mencap shows that in 2022/23, the NHS spent £534 million on inpatient mental health care for people with learning disabilities and/or autism, even though 41% of people in these hospitals could have their needs met in the community. The real cost is likely even higher, as this figure is for basic costs alone and not additional needs.²

A trade in people: ATUs and learning disability

Another issue is that over the past 16 years, the landscape of the inpatient healthcare economy has gone from one that was dominated by NHS provision to one in which the independent sector is now playing a greater role. Campaigners fear that there is no real incentive to discharge people or do a speedy job of ‘treating’ a person and getting them home.³

According to the report, A Trade in People: The inpatient healthcare economy for people with learning disabilities and/or Autism Spectrum Disorder, autistic people and people with learning disabilities have effectively become “commodities” in a system where the NHS is highly dependent on private providers. Using Companies House data, the group estimated the market was worth around £284m in 2017, with each patient in hospital for five years generating £950,000.⁴

Mark Brown, co-author of the report, says this market has created financial disincentives for councils and NHS commissioners to bring people out of the units. “They are effectively bringing back a cost, and there is a disincentive on the part of the hospital to release people because they are a vast source of income.

“Providers may argue that it is in their interests for people to come in and come out, and maybe that’s the case some of the time, but ultimately in their end-of-year accounts they all talk about the importance of bed occupancy and maintaining profit margins – and some of those profit margins are very significant.”

The report also established that patients detained within the independent sector were 30% more likely to experience an assault and 60% more likely to be restrained than inpatients in NHS Units.

It acknowledged that without the right homes with the right support, more people will face longer stays in these settings.

Why is there a shortage of appropriate housing?

Supported housing is defined as a housing service where housing, support and/or care services are provided to help people to live as independently as possible. Yet recent research by the Learning Disability and Autism Housing Network and Housing LIN shows there will be a shortfall of approximately 30,000 by 2037.⁵

There are between 35,000 and 37,500 people with a learning disability and autism who currently live in supported housing. Of this population, 23% live in mainstream housing with a care/support package, 15% are in residential/nursing care settings, and 37% live with family and friends.

As over 80% of supported living properties are provided by housing associations, it is recommended that the Government, local authorities and housing providers should collaboratively plan for further development of supported housing to meet the different needs of people with learning disabilities/autistic people.

Local authorities should also undertake up-to-date housing need assessments, including the need for supported housing, amongst people with learning disabilities/autistic people and publish a strategy for the future provision of such accommodation, every five years. Priority also needs to be given to those assessed as having care and support needs and people who live with parents and carers aged 70 and over.

Another recent report from the National Housing Federation (NHF), which represents housing associations, said that the sector can offer further support, but is being hindered by the lack of government investment.⁶

What are the government’s plans to improve this?

A recent report from the UK Parliament Women and Equalities Committee (WEC) acknowledged that people with a learning disability and autistic people were missing out on early interventions before spiralling into crisis and ending up in hospital. It said they were not getting the support they needed in the community, and this was a primary reason why targets to reduce inpatient numbers have been consistently missed.⁷

The history of missed targets began after a 2011 BBC Panorama documentary exposed abuse at Winterbourne View, a private hospital near Bristol. The scandal revealed the extent to which people with a learning disability and autistic people were inappropriately detained in hospital settings. It led to the publication of Transforming Care, which aimed to get everyone inappropriately placed in institutions back in the community by June 2014.⁸

Four years later, NHS England published it’s ‘Building the Right Support’ paper which was a national plan develop community services and close inpatient facilities for people with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition.⁹

In 2019, the NHS Long Term Plan pledged to halve the number of people with a learning disability and autistic people in mental health inpatient care by March 2024 compared to 2015 levels.¹⁰

All these targets have been missed. Since Winterbourne View, Panorama uncovered similar levels of abuse at Whorlton Hall. At the same time, the Norfolk Safeguarding Adults Board found that significant failures in care at Cawston Park hospital led to the deaths of three adults with learning disabilities.

The WEC report said that the Government also promised to reform the Mental Health Act 1983 to reduce the inappropriate detention of people with a learning disability and autistic people in mental health hospitals in the long term. Yet it did not include the Bill in the final King’s Speech of this Parliament.

It added that in most cases, the problems “were not necessarily about packages of care in terms of getting people out of wherever they are placed; it is often about housing.”

What is the answer to the lack of housing?

Learning disability charity Mencap say the first step is to reform the Mental Health Act, including ensuring people cannot be detained in mental health hospitals solely based on having a learning disability or autism without a co-occurring mental health condition.

It also wants to see investment in the right community support to stop the inappropriate detention of people with a learning disability and autistic people. This is in addition to updating and strengthening the Building the Right Support Action Plan and national target.

Scottish charity My Own Front Door has also called for the implementation of a Community First principle for the commissioning of support for all adults and children who have a learning disability in Scotland – ending the commissioning of multi-bed units.¹¹

It wants the Scottish government to invest nationally in a Specialist Provider Network to improve local support in every area in Scotland, maintain a national at-risk register and ensure that everyone identified on this has a plan by 2023 to come home to the community of their choice. It also wants to create a national Community Living Panel to ensure oversight and accountability of decision-making about individual placements.

Conclusion

It is not all doom. Some NHS Trusts, according to Mencap, have made huge progress in helping people to avoid inappropriate admissions to mental health hospitals. For example, Black Country Healthcare NHS Foundation Trust was previously ranked among the worst NHS trusts for avoidable mental health hospital admissions. It has now set up an emergency response team, which last year prevented 53 people from being admitted to hospital.

Wendy Ewins, Head of Commissioning, Case Management and Keyworking for people with a learning disability and autistic people at Black Country Healthcare NHS Foundation Trust, said: “Our Commissioning Team is on-call 24/7 to help families and staff support people through crises. Our offer includes a 24/7 Emergency Response Team and Crash Pads. This isn’t just about money; this is about recognising that our citizens have the best chance of leading happier, healthier lives with secure connections and a firm sense of belonging, if they can remain at home, or very close by when they are distressed or unwell.”

If these pockets of good practice could be highlighted and replicated, then maybe progress could finally begin to happen. However, once again it falls on another incoming Government to take up the mantle. Hopefully, this time they can learn from previous failings and increase support for community-based alternatives to detention as well as doing more to stop people reaching crisis in the first instance.

Meanwhile, charities, campaign groups and thousands of families will not give up until this human rights scandal is finally addressed.

References

1. https://www.challengingbehaviour.org.uk/wp-content/uploads/2021/02/4-My-family-member-has-been-sent-to-an-inpatient-unit-what-do-I-need-to-know.pdf
2. https://www.learningdisabilitytoday.co.uk/news/nhs-spending-534-million-a-year-to-lock-away-people-with-learning-disabilities/
3. https://communitylivingmagazine.com/atus/
4. https://wp.lancs.ac.uk/cedr/files/2017/06/A-Trade-in-People-CeDR-2017-1.pdf
5. https://www.housinglin.org.uk/Topics/type/Supported-housing-for-people-with-learning-disabilities-and-autistic-people-in-England/
6. https://www.housing.org.uk/resources/research-into-the-supported-housing-sectors-impact-on-homelessness-prevention-health-and-wellbeing/
7. https://www.housinglin.org.uk/_assets/Resources/Housing/OtherOrganisation/Inequalities-in-healthcare-and-employment-for-people-with-a-learning-disability-and-autistic-people.pdf
8. Transforming Care. https://www.england.nhs.uk/wp content/uploads/2015/01/transform-care-nxt-stps.pdf
9. HM Government, Building the Right Support for People with a Learning Disability and Autistic People Action Plan, July 2022
10. NHS, The NHS Long Term Plan, 7 January 2019
11. https://www.enable.org.uk/about-us/our-campaigns/my-own-front-door