A life in the community – photo: Seán Kelly

Alexis Quinn

Campaigner and author

People should enjoy the same opportunities as everyone else – the ability to live in a safe, comfortable home on a regular street and in a place of our choosing.

We should get to live with people we want to live with and have relationships and the chance of a family without scrutiny. If we want to work, go out to random places, stay up late and get drunk, we should be supported to do so.

Amy Tedd

Support worker, South Warwickshire

Having opportunities to build relationships, pursue careers and engage in hobbies and interests are essential to a good quality of life.

Stereotypes and prejudices, a lack of employment opportunities, inadequate funding for essential services and insufficient physical access are all huge barriers that inhibit a person’s right to a meaningful living standard.

Sarah Ford

Centre manager, Jolly Josh

Our Place To Call Home is a much-needed venue in Rochdale. We aim to meet the needs of those with additional needs, disabilities and profound and multiple learning disabilities, families and carers.

We’re proud we have a Changing Places [fully accessible] toilet. Regular or disabled toilets don’t meet the needs of the 250,000 people in the UK who require specialist facilities. Without these, it’s no wonder our families were previously isolated.

Joe Powell

Chief executive, All Wales People First

I’ve always wanted to be a taxpayer, to contribute to society. To be an active citizen. To reciprocate. To be a contributor, not a passenger. That dream became a reality when I was appointed national director of All Wales People First in 2012.

Unfortunately, I’m in a tiny minority. Most people are effectively retired and written off at 18 years old.

Human rights may be a major inconvenience to the government when legislating. But that’s exactly the reason we need them.

Dr Rashmi Becker

Sibling and Step Change Studios founder

An ideal community life for my brother would involve inclusive services and spaces. I’d like him to be able to access healthcare, housing, leisure centres, restaurants – public spaces and services where people are empathetic, kind, inclusive.

Simple adjustments can make a huge difference. Everyone can play a role, from the doctor making time to engage with him without preconceptions to the waiter at the cafe who’s always so welcoming. It’s not complicated – we just have to care.

Jo Sullivan

Chief executive, Superstar Arts

It’s an important part of our ethos that we deliver projects in a setting that shares space with other community groups.

This enables a truly integrative, inclusive experience, which leads to positive, productive community relationships.

We aim to create a supportive environment where adults express themselves via different creative outlets including exhibiting in local galleries and collaborating with mainstream artists and performers. It’s a successful way to challenge perceptions, and creates a great sense of belonging.

Simon Richards

Ambassador, Stay Up Late

In the past 10 years, I’ve gone from a person who mostly stayed in in the evenings to a person who is often out and about, at a karaoke or open mic night or at my drama group rehearsing for our next show.

I’ve been in supported living for a few years and I’m proud of the fact I can travel independently and safely to venues.

Anna Severwright

Co-convenor, Social Care Future

As I am a disabled woman, community living is more than just physically living in a community – it means I can be as active a member of my community as my non-disabled peers.

It means feeling welcome, that barriers (physical and attitudinal) are removed and any support I need to engage and contribute is available in the way I choose.

They’re the same things that matter to everyone as laid out in the Social Care Future vision: “We all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing the things that matter to us.”

Jim Blair

Consultant nurse in learning disabilities

The right to be engaged in society should be afforded to all, whether you use words or not, whether you fit inside the designated societal margins or not.
Each person has abilities, talents and skills, and should be deemed a contributor.

We need to see people and their families in real positions of power and authority with the ability to be change agents.

Dr Sam Smith

Chief executive, C-Change Scotland

What makes a successful life in the community for people with learning disabilities is largely the same as for everyone else.

Having space and a place where you’re loved and respected for who you are, where you can grow and become your own good self. Where you spend time with people you know and care about, and who know and care about you. Where you can live life by a rhythm that suits you, going to places you like to go, doing things you like to do. Where you feel safe and part of something bigger.

Jolanta Lasota

Chief executive, Ambitious About Autism

As a society, we should all have high aspirations for what autistic young people can achieve. Like everyone, they should have employment, education or training opportunities that enable them to live an active life as part of the community of their choice.

Early intervention, education and support play a key role in preparing people for the life they wish to lead.

Within our schools and college, we work with young people and their families to understand their interests and ambitions and to develop skills that will enable them to have a quality of life they deserve and are entitled to.

Dr Joanna Griffin

Parent carer, psychologist, author and Affinity Hub founder

My son, who’s 15, wants to go swimming, visit a cafe, walk the dog and see friends and family. He also needs to choose food from a supermarket, go the opticians, get the bus and be part of everyday life – something those who don’t have a learning disability may take for granted.

What supports us are inclusive, accessible facilities and a welcoming attitude. Education, awareness and representation helps. Those who stand out are the people who accept us as we are, with openness and patience.

Dr Simon Duffy

Director, Citizen Network Research

We live at a time of social isolation, where fear, poverty and prejudice have locked too many in their own little bubbles.

This isn’t about people with learning difficulties – our whole society is disconnected, insecure and distracted by consumerist dreams that are killing our planet. People with learning difficulties hold the key to a different vision of citizenship and community.

Community living must be about stepping up, daring to shake things up and creating new forms of social life, environmental action and political change.

Dr Ayesha Mahmud

GP and parent

As a parent, especially a Pakistani-British Muslim parent of a daughter with a learning disability, my aspiration is that she’s accepted as part of the community – able to live, work, socialise and enjoy life.

It’s my dream not to worry about what will happen when I’m not around. I hope people know she won’t just take but also give.

As a GP, making community living a success means ensuring reasonable adjustments, personalised annual health checks (which can lead to improved health outcomes) and that people are part of patient participation groups.

This is why, earlier this year, My Life My Choice (MLMC), an Oxfordshire-based self-advocacy charity for adults with a learning disability that I co-chair, withdrew from NHS England’s Care and Treatment Review (CTR) programme.

At a CTR, a panel of independent people discuss the care of someone who is at risk of ending up in a psychiatric hospital.

CTRs were introduced following the abuse against patients at Winterbourne View assessment and treatment unit in 2011.

They are supposed to ensure that people’s views are heard while they are in hospital and that they leave hospital as soon as possible, and to help prevent similar scandals from happening.

An expert by experience is included as part of the review panel. This is someone who has or cares for someone with autism or a learning disability. The panel also includes a clinical expert and the commissioner.

The NHS England guide to CTRs says the expert by experience role is to help the panel understand what someone’s care is like and how it could be better, and to help ensure the person and family carers have a productive review.

Hope versus reality

However, some 11 years after Winterbourne View, there has been little progress in reducing the numbers of people locked away.

According to official figures, at the time of Winterbourne View, there were more than 3,400 people in similar establishments. In 2022, around 2,000 people with a learning disability and or autism are still in such units.

Abuse and poor care continue. The Whorlton Hall scandal in 2019 and Eldertree Lodge in 2021 are just two more sickening examples.

MLMC believed that being part of the CTR process would make sure people got the right care, and that people would be moved quickly into a places nearer to their family and friends.

We are proud of ourselves for giving it a go and trying to be part of making the system work

As Paul Scarrott, an MLMC expert by experience, says: “We were hoping that it would get people a better life, out of the unit and into the community. “People have been in there a long time away from the family and they needed to get back to have a better life.”

The CTR programme has become part of a process that does not work well enough to keep people out of hospital.

We do not think taking part in it is the best use of time, and experts by experience should spend their time campaigning for better care.

Agree? Then join us

MLMC would like to continue to invite organisations to adopt our position that we need to remove ourselves from the treatment review process, and campaign for full system change. We would like to work with allies and other organisations who feel the same.

Some organisations have not been able to back our decision and, while that is disappointing, we understand their choice to do this.

We have also had some great support from individuals and one-to-one discussions with organisations such as NHS England, and were able to explain our decision.

The responses we have had directly and on social media include campaigners Rightful Lives, who describe our stand as “important and principled”.

The government this summer released its Building the Right Support Action Plan. It says the aim is to support more people to have the lives they want in the community.

We need to remove ourselves from the treatment review process and campaign for full system change

We welcome the government’s words in the action plan and some of its plans in the proposed reform of the Mental Health Act, such as the removal of “learning disability or autism” as an excuse for placing someone in an assessment treatment unit.

However if, as the government writes in Building the Right Support, the goal is that people with a learning disability and or autism “are supported to live full lives in their community, in their home”, then it needs to take action to make this a reality.

“The government’s got to do something,” says Scarrott. “These are people’s lives, so spend that money on people getting support so they can be nearer to their families and have their lives back and have a better life.

“We want to get everyone out and back in the community.”

With the CTR process, while it is frustrating that we have been part of something that we believe is failing some people, we are proud of ourselves for giving it a go and trying to be part of making the system work.

We believe change can happen, but only if the people in charge recognise their responsibilities and channel their power to return liberty to the thousands in our community who are locked away.

Ben McCay is co-chair of trustees at My Life My Choice

This includes the (under)funding of services and cuts, the amount of public money spent on services for people with learning disabilities, poor staff pay and staff shortages and some services extracting obscene profits while others struggle because they cannot make the numbers add up.

While these issues are urgent and important, they ignore crucial issues about money that really matter in the daily lives of people with learning disabilities.

Here are five things about money we should be talking about.

Control over money

The recent 200 Lives project, which I led at Manchester Metropolitan University (see box), evaluated the quality and costs of supported living and residential care for 200 adults with learning disabilities.

It showed that most people had some choice over how they spent some of their money, but ultimate control, particularly over big-ticket spending such as rent, usually rested with someone else.

Three out of four did not know if they had a personal budget or not, even though Department for Work and Pensions (DWP) statistics show that three-quarters of adults with learning disabilities do have some form of personal budget.

Choice in where to live

We know that the quality and location of housing makes a massive difference to people’s lives, and that housing costs matter whether someone is renting or buying.

However, little of this reaches the bubble of debate when it comes to supporting people with learning disabilities.

The 200 Lives project found that most people had not made active decisions about where they lived. Those in supported living were connected to their neighbourhoods, whether for good (where people felt safe, connected and mobile) or ill (in isolated areas of antisocial behaviour, crime and deprivation).

Almost 50,000 adults with learning disabilities are living with their families in England. Is this what people and families want?

A largely invisible homelessness crisis is looming. The number of households with a person with learning disabilities owed a homelessness duty has increased almost 40% in less than four years.

Poverty

Research has repeatedly shown that poverty and hardship play a big part in the poorer health of people with learning disabilities all through their lives.

Twelve years of austerity coupled with the impact of Covid means that more people with learning disabilities and often their families are likely to be experiencing poverty.

Support to equip people for jobs they want to do (rather than just to polish CVs) is cost effective but not happening

Then there is the impact of the huge and ongoing increase in the cost of food, fuel and much else.

The scale of poverty being experienced by people with learning disabilities, particularly those not eligible for any kind of social care support, is largely invisible.

Inadequate, punitive benefits

People with learning disabilities are largely absent from general discussions about the adequacy and punitive operation of benefits such as universal credit and employment support allowance (ESA).

The number of people identified in DWP statistics as having learning difficulties, learning disabilities or autism receiving some form of disability benefit is rapidly increasing.

More than 600,000 people (including over 250,000 children) were receiving disability living allowance, personal independence payment or attendance allowance in May 2021. This is an increase of 34% across all benefits since May 2018.

How stressful is life under ESA, with its threat of sanctions, or having to undergo PIP assessments and reassessments?

Proper paid jobs

It is beyond doubt that proper (secure, reliable and fulfilling) paid jobs are linked to better lives.

Through the pandemic, many adults with learning disabilities in paid jobs were valued to the extent that they were placed on furlough schemes and returned to their jobs.

The 200 Lives project, however, found many people wanted to work and lived fairly empty lives without a job.

Employers are crying out for reliable, committed workers, yet fewer than 6% of adults with learning disabilities getting long-term social care are in any form of paid work, with most of that being extremely part time and low paid.

Better education and support to equip people for substantial jobs they want to do (rather than just to polish their CVs), without a punitive benefits system terrifying people is known to be cost effective but it isn’t happening.

In the abstract swirl of media debate, service providers, councils, trade unions and think tanks have all been able to have their say about money when it comes to people with learning disabilities. It’s time for people with learning disabilities to take centre stage.

The Mental Health Act discriminates against people with learning disabilities.

I argue this as a social worker involved in care and treatment reviews (CTRs), having become increasingly concerned about the grounds for admission, detention and involuntary treatment under the 1983 law.

My role as a clinical adviser involves working as part of a team that includes a senior commissioner from a clinical commissioning group and an expert by experience (someone who has used mental health services).

CTRs were established as the NHS and governmental response to the significant physical and emotional abuse suffered by people diagnosed with learning disability and/or autism at the hands of care staff at Winterbourne View hospital in 2010-11.

They arose from Margaret Flynn’s report and recommendations into the events at Winterbourne published in 2012.

When to challenge admission

There are two important stages in a person’s journey when the need for compulsory admission must be critically challenged.

The first is at the point of an early referral or serious concern when the use of the compulsory powers of the Mental Health Act is being considered as a last resort to manage or control a critical situation.

The second is at compulsory admission. The evidence of the lawfulness of a such an admission, its consequences and how it is in the interests of the person who is soon to become a patient have become increasingly interesting to me.

In the introduction to his 2017 book, Men In White Coats: Treatment Under Coercion, George Szmukler, an emeritus professor of psychiatry and society at the Institute of Psychiatry, notes: “The grounds for involuntary treatment have been long lived; first that the person has a ‘mental disorder’, a list of which appears at para 2.5 of the act’s code of practice, and second that the person needs to be treated in the interests of his/her safety or for the protection of others.” (See box at end of article).

What Szmukler observes as the qualifying criteria have been at the heart of mental health laws for more than 150 years. Mental disorder and risk continue to underpin the modern legislation.

In respect of people with a learning disability, the qualifying criteria must be clinically evidenced by a psychiatrist and an approved mental health professional, usually a specialist social worker with additional training.

This must be done to lawfully justify the curtailment of the person’s human rights: autonomy, choice and the right to refuse treatment and liberty, including the freedom to leave.

Although classified as an intrinsic mental disorder under the act, learning disability in itself cannot, no matter how complex the cognitive impairment, stand alone as a qualifying criterion under which an individual can be lawfully admitted and detained. This is important for a number of reasons.

If a person with a clinical diagnosis of learning disability is to be deprived of liberty and autonomy lawfully, they must, in addition to this diagnosis, exhibit “abnormally aggressive and/or socially irresponsible conduct”.

But I have concerns about how thoroughly psychiatrists conduct the necessary assessments, and how accurately they interpret the behavioural criteria for admission.

In deciding if it is appropriate to use the act, in many situations it will be in the person’s interests to try to prevent compulsory admission, detention and treatment, rather than setting them on a clinical pathway to a cure – the aim of such compulsory admissions.

Since events at Winterbourne View in 2011, notwithstanding the government’s response via Transforming Care, incidents of significant and gratuitous abuse or neglect, sometimes resulting in deaths, have continued.

I have concerns about how thoroughly psychiatrists conduct the assessments, and how accurately they interpret the behavioural criteria

The long list includes the death of Connor Sparrowhawk while detained by Southern Health in 2013, the abuse of adults with learning disabilities at Whorlton Hall in 2019 and three deaths at the private Cawston Park hospital in Norfolk.

The author of the 2021 report into the three Cawston Park deaths was Margaret Flynn, chair of the adult safeguarding board in Norfolk, who was also author of the Winterbourne View report.

In her press conference to launch the report, she deliberately referred to patients who were detained more accurately as “prisoners who were incarcerated”.

Questions for professionals

There are questions we must ask of professionals involved in the admission of people with learning disabilities under the Mental Health Act, specifically psychiatrists, approved mental health professionals and psychologists.

These questions must not be shirked because of the potential harm that can arise from the significant decisions such people make.

First, when does “aggression” morph into “abnormal aggression”? Who has the right to decide this, when the results are potentially momentous and life changing? Are we content to leave this to the responsible clinician?

Second, when does “irresponsible conduct” morph into “seriously irresponsible” conduct? Arguably, such perceptions are more culturally determined in the eyes of the beholder than clearly demarcated within the law.

To what extent can the responsible clinician involved in admitting a learning disabled person make an appropriate, accurate clinical judgment – in a frequently highly charged encounter – that the “abnormally aggressive and/or seriously irresponsible conduct” is directly attributable to that individual’s identified clinical condition, in this particular case their learning disability?

Is it inconceivable that the genesis of the perceived “abnormal” aggression might lie elsewhere and not be directly attributable to the learning disability?

The cause may lie in some other intense and powerful source, such as severe pain caused by a medical condition such as kidney stones. Or it could be caused by some unknown trauma that has not been identified because of the person’s complex communication needs.

In such cases, any compulsory admission would be unlawful, as would any mandatory treatment under the act.

There is a substantial body of literature, practice and evidence in the field of learning disability that derives from the social model of disability (in which people are seen as being disabled by barriers in society). This is continuing to grow around the role of what is labelled “challenging behaviour” in the communication strategies of cognitively impaired people.

Many require the skills of specialist speech and language therapists to minimise misunderstandings and reduce the possibilities of aggressive conduct being interpreted incorrectly. Such interventions might prevent a breach of human rights because of an unlawful admission.

I regard the criteria under the Mental Health Act for the lawful admission of a person with a learning disability into compulsory psychiatric care as discriminatory.

This becomes clear when one compares how the “abnormally aggressive and/or seriously irresponsible” conduct criteria in this act and its code of practice are applied to people with learning disabilities and those who are not legally defined as having a mental disorder.

Should a non-learning-disabled person exhibit such behaviour, his – for the person is highly likely to be male – outcome will be very different from our potential patient with a learning disability.

If apprehended by officers of the state, our unfriendly male may find himself initially arrested, detained, possibly briefly deprived of his liberty in a police cell, then cautioned or released on bail to appear in court at a later date.

Quite simply, abusers do not value, respect or like those they are charged to care for and support. They appear to revel in the power of control

However, there will be no significant hindrance to his human rights. Depending on various contextual factors, he may receive a custodial sentence, the length of which will be specified by the court.

The outcome is likely to be a very different outcome for a learning-disabled person who, from the point of admission, will experience significant effects on their human rights through detention.

Also, I would like to examine some of the factors that over time have contributed to the gratuitous violence and neglect inflicted upon patients with a learning disability who have been “lawfully” detained in assessment and treatment units and in private and NHS hospitals.

On each occasion, some of the most appalling abuse has been perpetrated on vulnerable, dependent human beings by other human beings deemed professional or given the status of carer by someone or other.

Government action ineffective

CTRs were the governmental response to the findings of the serious case review into abuse at Winterbourne View.

Events since then have proved that CTRs have not produced the desired outcomes of significantly reducing the population of people with a learning disability compulsorily detained by the state.

They have also not led significantly to people having access to a good quality of life in the least restrictive placements in the community commensurate with their own and others’ safety.

Instead, institutional abuse of vulnerable people continues. Following the Cawston Park review, the government’s response has been to add yet another layer – safe and well reviews – to an already-crowded area.

Additional key lines of enquiry have been added to an already extensive list in CTRs, with an increasing focus on more detailed interviews with inpatients and their relatives. External investigators have been allowed dedicated time to observe activities on wards.

As critical as it is to spend time with patients, families and advocates in their living environment, this does not address the question: what is key factor that enables certain staff to bully, physically and verbally abuse and humiliate vulnerable people?

Quite simply, abusers do not value, respect or even like those they are publicly charged to care for and support. They appear to revel in the power of being able to control people.

Finally, what role – if any – do psychiatrists and psychologists play in setting, reinforcing and challenging the attitudes and practice that collectively make up the culture within which the powerless are detained?

Where were the psychiatrists and the psychologists at Winterbourne View, Whorlton Hall and Cawston Park?

Is the model of leadership open and transparent? Is the model of care under the Mental Health Act still appropriate, given the concerns that have emerged in relation to people with learning disabilities?

In every case of institutionalised abuse, the issue to urgently address is the culture operating within a closed system. We need to be more intrusive to explore the culture operating the institutions and who sets or defines it, as well as how cultures change for good or ill and how they can be reinforced or challenged.

‘Not to challenge a psychiatrist is no longer an option’

My journey to understand and critique potential unlawful compulsory admissions of learning-disabled people to hospital has been given added impetus by George Szmukler’s general examination of mental health legislation.

This has significantly affected my own practice in how I will conduct care and treatment reviews.

I will insist not only that I examine admission paperwork signed off by the responsible clinician but also that I am given written evidence to illustrate the behaviour on which the admission is founded. I will ask for evidence of how this was deemed to be directly linked to clinical status, not the outcome of some stimulus unconnected to the disability.

Not to challenge a psychiatrist is no longer an option.

Ken Stapleton is a social worker