A small number of people with a learning disability may have a mental health problem and benefit from a 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 end up stuck there for years at a time. 

We know that people with a learning disability 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 autistic people who display behaviour that challenges, 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, the Challenging Behaviour Foundation and Respond 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 

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 autistic people 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. 

People with a learning disability and autistic people can currently be sectioned under the Mental Health Act even if they don’t have a mental health problem. We believe this is wrong.

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. They published a Draft Mental Health Bill in 2022 with reforms that would remove the ability for professionals to detain someone purely because of their learning disability, or autism. But we are still waiting for the Mental Health Bill to be brought in and made law. The Government is running out of time to do this before the next election . This is why we are calling on the Prime Minister to bring in the Mental Health Bill and make it law as a matter of urgency.

Unfortunately, people can 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.

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.

They published a Draft Mental Health Bill in 2022 with reforms that would remove the ability for professionals to detain someone purely because of their learning disability, or autism.

But we are still waiting for the Mental Health Bill to be brought in and made law. The Government is running out of time to do this before the next election. This is why we are calling on the Prime Minister to bring in the Mental Health Bill and make it law as a matter of urgency.

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 autistic people get the right support in the community.

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. Last year the government published a new ‘action plan’ to get people with a learning disability and autistic people out of mental health hospitals, and we and many others are working hard to ensure it is strengthened and 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 units and their families.

When we refer to “inpatient units” or “mental health hospitals” and “institutions” we are referring to the range of inpatient mental health provision in which people with a learning disability, Autism, or both, may be placed under section. This includes assessment and treatment units (ATUs).

Isabelle, whose son Matthew, was detained in an Assessment and Treatment Unit for 15 months, explains what an inpatient unit is in this video:

The Transforming Care programme was the government’s response to the public outcry about the shocking abuse taking place at the Winterbourne View care home , revealed by BBC’s Panorama in 2011. 

After the exposure of Winterbourne View, the government committed to a programme of work aimed at supporting people to move out of units and back to their local communities. The government promised people in inpatient units would be supported to move back to their local communities by 1 June 2014. This simply didn't happen.. 

In 2015, NHS England has led a 3 year closure programme called ‘Building the right support’. NHS England promised that by May 2019: 

• 35-50% of inpatient beds for people with a learning disability and/or Autism would be closed 

• the right support would be developed in local communities for people with a learning disability and/or Autism and behaviour that challenges. 

NHS England published a 'service model' setting out the range of local support hat should be available in each area by March 2019. 

This target was missed and the government promised to close 35% of inpatient beds by March 2020. This was missed as well. 

The government has now committed to closing 50% of inpatient beds by March 2024. This target is in the NHS long term plan.

Most people with a learning disability or autistic people 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 or autistic people 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. However, the Government is running out of time to do this before the next election. That is why we are calling on the Prime Minister to bring in the Mental Health Bill and make it law as a matter of urgency.

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 at 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