We want the government, NHS and local authorities to work together to provide the right support for people with a learning disability in their local communities, not in institutions.

Around 2,000 people with a learning disability and/or autistic people are still locked away in modern-day asylums.

They are often many miles from home. Some are subject to physical restraint, over-medication and being kept in isolation.

Despite often fighting for years to get them out, families are powerless against the system.

This is a human rights scandal. No one should be treated like this. We have prepared answers to some of the most frequentl asked questions on this topic below that you may find useful.

Hear from families of former patients

In this video, hear the stories and personal accounts of the families of former patients to understand why things must change

What is Mencap’s Homes Not Hospitals campaign?

Mencap’s Homes Not Hospitals campaign is about making sure that people with a learning disability and/or autism get the support they need to lead full lives in the community close to family and friends.

Too many people are being inappropriately detained in mental health hospitals – not because they have a complex mental health problem, but because of a failure to provide the right care and support for them in the community.

This issue was brought to national attention in 2011, when the BBC Panorama documentary ‘Undercover Care’ highlighted a regime of abuse, neglect and mistreatment at Winterbourne View hospital - a private hospital that was designed to assess and treat some of society’s most vulnerable, including people with learning disabilities and autism.

In response to the documentary, the Government promised to move people with a learning disability and/or autism out of these hospitals and provide them with the right care and support in the community. The Government has set several targets to achieve this but has continued to miss them. Their latest target is to close 50% of inpatient beds by March 2024.

Sadly, countless families are impacted by this ongoing issue and there are currently at least 2,000 people with a learning disability and/or autism who are trapped in these hospitals, with many locked away for an average of over five years.

Mencap has spent over a decade campaigning to end this human rights scandal. The UK Parliament’s Joint Committee on Human Rights has also examined the issue and has agreed the current situation is ‘inflicting terrible suffering’ onto people and their families.

We want to see people back in their communities, close to their family and friends, with proper social care support in their local area.

Why do people with a learning disability and/or autism end up in these hospitals?

A small number of people with a learning disability may have a mental health problem and benefit from brief period of assessment and treatment in hospital. However, most people with a learning disability should be able to get the care and support they need in their community. Instead, they are being locked away in hospitals inappropriately due to a lack of community support and ending up stuck there for years at a time.

We know that people with a learning disability and/or autistic people may display ‘distressed’ behaviours, or behaviour that is challenging. These behaviours are a way of communicating their needs. They may be communicating that they are in pain, discomfort, or feeling anxious and frustrated. Sometimes these behaviours may include self-injury, or destructive behaviours.

Without the right support, the person may reach a point of crisis and end up being sent to a mental health hospital even when they don’t have a mental health problem.

For people with a learning disability and/or autism who display ‘distressed’ behaviours, the right approach is to provide support in the community. This includes a care package from care staff who have the right skills to support people who may display ‘distressed’ behaviour, a suitable environment (e.g for some people with sensory needs, noise can trigger behaviour), and support from health professionals such as learning disability nurses and psychologists.

Mencap has published several guides offering advice and support for families, and outlining what good community support looks like: https://www.mencap.org.uk/sites/default/files/2016-08/Meeting%20The%20Challenge%20guide%201.pdf

Are learning disabilities and mental health problems the same thing?

Learning disability is often confused with mental health problems, but they are entirely different. Learning disability is not a mental illness.

Mental health problems can affect anyone at any time, and may be overcome with treatment, which is not true of learning disability.

A learning disability is a reduced intellectual ability which affects someone for their whole life. It means that people might need support with everyday tasks such as shopping, cooking or travelling to new places.

Autism is a lifelong developmental disability which affects how people communicate and interact with the world.

However, people with a learning disability and/or autism may have a mental health problem as well. In these situations, they need the right mental health support like anyone else, and most people should be able to get the support they need in the community.

If learning disabilities and/or autism aren’t the same as mental health problems, then why are people being sectioned?

People with a learning disability and/or autism can currently be sectioned under the Mental Health Act even if they don’t have a mental health problem. We believe this is wrong and we are pleased that the Government is currently proposing reforms to the Mental Health Act. These reforms will remove the ability for professionals to detain someone purely because of their learning disability, or autism.

Unfortunately, people end up being inappropriately sectioned due to a lack of funding and available services in the community. Local authorities and social services have faced many years of cuts and it’s currently estimated there are 165,000 adult social care jobs vacant in England right now.

With the system under pressure and a lack of investment in either the social care workforce or appropriate community housing options, people are frequently becoming ‘stuck’ in these places with no other options.

Why is it inappropriate for someone with a learning disability/ and or autism to live in a mental health hospital?

People with a learning disability and/or autism should be able to live in the community with the right support like anyone else. Hospitals are not homes.

Good support means that a person with a learning disability and/or autism is getting the support they need to live a safe and healthy life. Their care should be unrestrictive as possible. But too often we are seeing misuse of restraint and overmedication in inpatient units.

Sadly, countless investigations by the Care Quality Commission have found that a considerable number of inpatient wards for people with a learning disability or autism were either inadequate or required improvement.

The hospital environment is noisy and overwhelming, and for someone with autism and/or a learning disability, this kind of setting only increases their risk of ‘distressed’ behaviours.

Mental health workers may not have the relevant training to support and understand people with learning disabilities and autism. This can lead to restrictive, or in some cases, even abusive practices.

NHS figures reveal that in the first six months of 2022, there were nearly 26,000 reported uses of restrictive practices, such as people being kept in isolation or being restrained - either physically, or with anti-psychotic medications to placate their behaviour.

Since Winterbourne View, there have been more abuse scandals uncovered, including at Whorlton Hall, in County Durham, another private hospital for people with learning disabilities and autism. This has brought into sharp focus the continued risk to people in inpatient units and the lack progress made by the Government.

Are people being locked away because they are dangerous?

While there are some people with learning disabilities and/or autism who may be detained in hospital after having been involved in criminal proceedings, most of the 2,000 currently detained people have committed no crime – but are still being held for years at a time.

The right approach to support people with ‘distressed’ or challenging behaviour is for the person to get a package of care in the community, which includes being supported by skilled carers who know how to meet the person’s needs.

Many people with a learning disability and/or autism can deteriorate in a hospital setting because the environment is not right for them, and this can make their behaviour worse. It also makes it harder to families to get their loved ones discharged, as they continue to be seen as a risk to themselves or others.

What kind of care do people with a learning disability and/or autism need?

What people need is to receive good quality, dedicated care in the community from skilled staff who understand how to support their needs. Mencap has worked with many families to campaign for uniform investment in community support and to ensure their loved one receives a proper needs assessment around their care requirements.

Hospital care is very expensive. Currently, keeping someone with a learning disability and/or autism in a high security hospital, such as Rampton or Ashworth, costs an average of £250,000 per year. It is generally recognised that allowing someone to live in the community with the right support will cost the same or less.

The Care Quality Commission, which regulates care in England, has said that “considerable amounts of money are being spent” on environments which are “often not appropriate.” They agree that “the money available would be better spent on providing individual person-centred care in the community.”

Evidence shows that community-based housing enables greater independence, inclusion and choice, and that ‘challenging’ or ‘distressed’ behaviour lessens with the right support. We know that people with a learning disability and/or autism will benefit from personalised care, and we have also seen how increased support in the community can prevent inpatient admissions. The Government has published a service model called ‘Building the right support’, which sets out the full range of support that should be available for people with a learning disability and/or autism in their local areas. This includes suitable housing, the right social care support, professionals in the community with the right expertise to help prevent and manage crisis situations, and flexible social care provision to provide an alternative to inpatient admission at a time of crisis.

Why can’t families get their loved ones out of these places?

Most people with a learning disability and/or autism who are in mental health hospitals are detained under the Mental Health Act 1983.

At present, it can be too easy for people with a learning disability and/or autism to be sectioned under the Mental Health Act – they don’t even need to have an actual mental health problem – they can be sectioned simply for having ‘distressed’ or ‘challenging’ behaviours. When this happens, it can be very hard for families to challenge the system.

Once people are admitted, they can end up being stuck there for many years as the environment is wrong for their needs and leads to an escalation of ‘distressed’ behaviours. This can make it even harder for them to be allowed to move back into the community, as professionals will argue their

behaviour is too challenging. This is a nightmare situation for families, who feel powerless against a system that has their loved one locked away.

The Government has committed to changing the Mental Health Act and to improve how it works for people with a learning disability and autistic people. We hope this step will help to ensure that individuals and families are properly included and listened to.

What is Mencap doing to address this situation?

Mencap is working with a number of families who have loved ones either currently in inpatient units, or who have previously been held in one. The experiences of these families underpin all the campaigning work we do, from raising awareness of the issue to the public, to informing the Government about what needs to be done to make sure people with a learning disability and/or autism get the right support to finally end this nightmare.

We are campaigning with families and other organisations on many fronts, both behind the scenes and publicly, to hold the Government to account and ensure they work together with the NHS and local authorities to provide the right support for people with a learning disability in their local communities, not in institutions.

This includes briefing MPs about the issues and responding to consultations to influence policy and the law, including the Mental Health Act. The Government has recently published a new ‘action plan’ to get people with a learning disability and/or autism out of mental health hospitals, and we will be working hard to influence the plan’s delivery.

We also provide information, advice and legal casework support for people with a learning disability who are in inpatient unts and their families.

I’m worried about a loved one who has a learning disability, what can I do?

If you have any concerns about the wellbeing of your loved one, please contact Mencap’s Learning Disability Helpline. Our trained advisers can offer support and advice, or signpost to appropriate services who can help.

As every individual case will be different, we want to make sure any advice is relevant to your case. You can visit our website which has lots of information and resources: https://www.mencap.org.uk/contact/contact_mencap_direct, or contact our helpline on helpline@mencap.org.uk. You can also call 0808 808 1111 (10am to 3pm, Monday to Friday).

You may also want to read our Meeting the Challenge guide around poor care and concerns about care practices: https://www.mencap.org.uk/sites/default/files/2016-08/Meeting%20The%20Challenge%20guide%205.pdf

I need urgent support for my mental health, can you help?

If you or someone else is in crisis, but you don’t think you need the police or an ambulance: