Fit notes face a change

Fears have arisen that claiming sickness benefits will become harder, amid claims people are being written off as unfit for work. Charlie Callanan reports on pre-election proposals

At the health centre: GPs normally provide fit notes but this task may be passed to private companies

As Community Living was going to press, the government was considering an “overhaul” of the system for providing fit notes.

While the outcome of the election may determine whether this goes ahead, Labour in opposition has emphasised the importance of getting people back in work.

Conservative prime minister Rishi Sunak said the “sick note culture” needed to change “so the default becomes what work you can do – not what you can’t”.

Fit notes are used as certification for people who need to stay off work because they are unwell and as initial medical proof in benefit claims. They are given for a particular period and can be renewed as necessary.

Sunak’s criticisms of the so-called sick note culture include a claim that too many people are being “written off” as unfit to work.

Of 11 million fit notes issued last year, only 6% suggested a option other than the patient to being signed off as too unwell to work.

The government believes this needs to change. It wants the process to include options of if and how a patient may be able to work, despite being unwell.

At present, the professional signing a fit note can suggest options including amended work duties, altered hours, workplace adaptations and a phased return.

The announcement of the review specifically mentioned people who are out of work due to mental health difficulties, stating that 53% of people signed off work due to long-term sickness at the start of 2023 were inactive because of depression, anxiety or “bad nerves”.

Separately, recent comments from Conservative secretary of state for work and pensions Mel Stride suggested that too many people were claiming sickness benefits because of poor mental health.

Disease or just life?

He said there was “a risk now that we are labelling the normal ups and downs of human life as medical conditions which then actually serves to hold people back and… drive up the benefits bill”.

For employment and support allowance, a fit note is required as proof of disability or long-term illness when a person first makes a claim for the benefit. In universal credit, a fit note is required as proof of entitlement to claim the benefit owing to disability or illness.

These claimants are then subject to the work capability assessment to determine if they are entitled to these benefits in the longer term.

Fit notes are not usually required by claimants once the assessment has been completed and a decision issued on whether they have limited capability for work.

Work capability assessments are often poorly and inaccurately completed by health professionals employed by private contractors

If a claimant is given a decision that they are fit for work and wants to challenge this, they have to provide fit notes until the dispute process (involving a reconsideration and/or appeal) is resolved.

Fit notes are usually provided by GPs, although other doctors such as hospital consultants and certain health professionals (such as physiotherapists), can issue them.

The review will look at whether responsibility for providing fit notes should be removed from GPs. It intends to test giving responsibility to “specialist work and health professionals who have the dedicated time to provide an objective assessment of someone’s ability to work and the tailored support they need”.

The review has raised alarm among organisations that support disabled claimants.

The Disability Benefits Consortium, which represents more than 100 organisations for disabled people, said that “continued tightening of work-seeking conditionality for claimants… has had no discernible effect in helping disabled people back to work… Making it harder to get sickness certification will exacerbate this problem.”

Advice workers and other client representatives already witness those with disabilities and long-term health conditions undergoing a robust assessment process via the work capability assessment.

There is repeated criticism of how assessments are often poorly and inaccurately completed by health professionals employed by private contractors. The fear that the fit note process will simply be handed over to such contractors.

‘Those hospitals are not nice places. Learning disability and mental health should be separate’

Some 150 campaigners protested to the Welsh Government over people being locked up because support in the community is just not available. Dawn Cavanagh and Sophie Hinksman were there

Stolen Lives campaign group holding its Homes not Hospitals protest

I have a 21-year-old son, Jack, with a learning disability, autism, ADHD and epilepsy who is locked up in a hospital in Wales. And I know families from Wales who also have loved ones locked up in hospitals, writes Dawn Cavanagh.

There are too many institutionalised, congregate settings in Wales. There are also experiences of poor care. These can lead to behaviour that challenges and, under mental health law, people with a learning disability can be sectioned for that – not because they have a mental health condition.

The system is stacked up against them and I find this deeply unjust.

Stolen Lives, the campaign I set up last November, is important because when you have a loved one with a learning disability and/or autism who is locked up in a hospital, it can be really isolating and difficult to fight the system.

And we are talking about human rights abuses here. Many of our loved ones have been segregated, secluded, drugged and/or restrained.

Stolen Lives brings these families together, helping them to feel less alone and disempowered, giving them a unified voice with which to bring attention to this issue and fight for change.

I hope it acts as a much-needed wake-up call to decision makers, forcing them to listen and act.

I cannot recall a time when people with learning disabilities and/or autism, their families and organisations congregated outside the Senedd to protest about such an important human rights issue.

On the day, it was incredible. You couldn’t see the Senedd steps because of the sheer volume of people.

We had some great speakers, including Sioned Williams, MS for Plaid Cymru and chair of the cross-party group for learning disabilities. Game of Thrones actor Owen Teale joined and had his picture taken with protesters. We ran an online campaign during the day via campaign group Rightful Lives and self-advocacy organisation All Wales People First.

The most powerful moment was seeing so many people with learning disabilities – who face so many barriers to democratic participation – holding up banners and chanting outside the Senedd.

Another powerful moment was when an autistic man who happened to be passing joined us. He explained he had been a mental health inpatient and felt strongly the system had let him down.

It was also moving to see Jane Haines and her mother Judy at the protest. It was coming up to the second anniversary of the death of Jane’s daughter Ayla. Ayla, who had autism, died miles from her home in Wales in a mental health unit.

It has been over 40 years since the pioneering 1983 Wales strategy on learning disability aimed to get people out of long-stay hospitals and into their own homes. Yet today people are being locked up in hospitals because the support is not there in the community. While there is a strategic action plan for 2022–26, there is no sense of how things will be done, by whom or by when.

Wales once led the way – but now it has lost its way.

The Welsh government says that it set the policy and it is up to the health boards and the local authorities to deliver. The problem is that they don’t do this and the Welsh government don’t police this so there are no consequences for not implementing the policy.

We are not aware of a national plan for building the right support here in Wales. There is a lack of strategic thinking.

Stolen Lives hopes that the protest will show the Welsh Government the strength of feeling that is out there. For too long, it has failed to listen to what people with learning disabilities and/or autism, their families and organisations tell them. We are fed up with being told that the government does not get involved with individual cases.

We have launched our petition to stop people being locked up, which we really hope people will support, and we will continue with our campaign in the hope that the Welsh government will work with us to address this injustice.

Dr Dawn Cavanagh is an academic, activist and campaigner from Pembrokeshire, Wales

 

The issues we’re campaigning on are important to me, writes Sophie Hinksman.

At the protest, I gave a speech about my own lived experience. I’m an individual with a learning disability and I was placed in a mental health hospital a few years ago. I had two stays in the same year – 28 days each stay.

I know people who have had similar experiences to me. I also know Dawn and her son Jack. Their experiences are so upsetting.

We don’t want people stuck in mental health hospitals. They need to be living in their own homes. Those hospitals are not nice places to be stuck in. It’s so important that learning disability and mental health are kept separately.

It’s so important to have the right support. Forty years ago, Wales was ahead of everyone its strategy that aimed to get people out of institutions and into the community. Now I feel we’re going backwards.

I wanted to get involved in this because this is happening to real people. Real people like me, like Jack and many others. We must get people to listen and we must stop moving backwards.

It’s important that change happens. People must not be put in these hospitals when it’s the wrong support for them. I hope that co-production will become a reality so that we can get things going forward not backwards.

This protest was much bigger than ones I did before. It was my first stand-up event – the others were marches. This was the only one I have been to with the media present.

It was very different, because I didn’t know who was going to be there. I wasn’t expecting to be in the media either until very close to the event.

It was a very good day with a great turnout. Lots of people there from the media. I was happy with my speech and the media – the BBC. It was a shame the weather wasn’t better.

The most memorable moment was people with learning disabilities and parents and carers coming together and chanting for joint change. The camaraderie and mutual support for a cause we were all so passionate about.

Why do I think people with learning disabilities are still being placed into secure mental health units? Not everyone has a powerful voice. Not everyone has the confidence to speak up. I have the confidence to speak up, but I couldn’t when I wasn’t well.

When people are vulnerable, there is a danger that professionals can barge in and take over.

It’s so important to keep co-production at the forefront of what we do when it comes to support for people with learning disabilities.

Consult with the person, with their family and their support people. We must be given the right support for all that to happen.

Now the protest has taken place, hopefully decision makers will listen to us and we can move forward with change for the better.

It’s important now that we have started the protest that we don’t let this slide. We need to keep going.

Sophie Hinksman is a campaigner from West Wales

stolenlives.blog

Striking while the iron’s still hot

With a new government on the horizon, politicians and policymakers need to do more about the incarceration of people with learning disabilities in institutions. Saba Salman reports on campaigns focusing on the issues

Polling Station sign

Just over 13 years ago, on 31 May 2011, BBC Panorama broadcast horrifying undercover footage of staff abusing inpatients at Winterbourne View assessment and treatment unit in south Gloucestershire.

The shocking case sparked public and political condemnation. People were not only subjected to verbal and physical abuse but also incarcerated in secure mental health units, despite having committed no crime nor having any mental health issues.

In response, the government promised to move people into real homes in communities, with “transforming care” plans and targets to halve the number of people in such units in England by March this year (from around 3,000 in 2015 to 1,500 by 2024).

Today, according to the latest NHS figures, 2,045 people with learning disabilities and/or autism are still locked away, with half having stayed for over two years.

Recent analysis by Mencap and ITV News suggests that the government has been spending over £500 million a year placing people in such settings.

Numerous scandalous failures in inpatient units since Winterbourne View include the preventable death of teenager Connor Sparrowhawk in 2015 at a Southern Health NHS Foundation Trust assessment and treatment unit.

The #JusticeforLB campaign (Connor was affectionately known as LB or Laughing Boy) raised awareness and fought successfully for answers.

The campaign for truth proved Southern Health’s responsibility for Connor’s avoidable death while also highlighting the inhumane treatment of other people with learning disabilities.

A new drama, Laughing Boy, premiered at the Jermyn Street Theatre in London in April, bringing Connor’s life and the campaign to the stage (recently reviewed by Community Living).

Now, as a new government forms, politicians and policymakers should familiarise themselves – if they have not done so already – with campaigning and activism on these issues.

Here, we look at just a few efforts to shine a light on the ongoing care failure and human rights scandal.

The solution is to close secure hospitals and build appropriate support for people

Don’t Lock Us Away

Oxfordshire-based user-led charity My Life My Choice (MLMC) launched Don’t Lock Us Away in October 2023.

The charity explained at the time: “We think people with learning disabilities and autism should have the right support to live in the community – not be locked away in hospitals that are only meant for short-term care.

“Most people with a learning disability live in the community and have a good life. We want everyone to have this kind of life. This is why we started the Don’t Lock Us Away campaign

“We believe the solution is to close secure hospitals and build appropriate support for people with learning disabilities.”

MLMC worked with the British Institute of Human Rights to create a free guide that aims to support people to move home from hospital (available on the MLMC website). It includes information on how to use the Human Rights Act to challenge the length of hospital stays.

Supporters can get involved in MLMC’s campaign by finding out how many individuals are stuck in hospital in their local area and share this information with the charity. They can also lobby local mental health services to get people out of hospital and ask their MPs to get the minister for health and social care to take action.

mylifemychoice.org.uk

Man making decision on ballot paper
Decision time: political parties are being targeted to improve support for people. Photo: Seán Kelly.

Use Your Power

In March, advocacy and involvement charity VoiceAbility started a drive to demand that the secretary of state for health and social care intervened to end the “hidden scandal” of people detained for years in mental health hospitals.

Its Use Your Power campaign, which included a short awareness-raising film (watch it on its website) urges political parties to commit to using the secretary of state’s powers to direct NHS England to improve support for people, enable them to live in the community and reduce detention times.

“It does not need to be this way,” says Jonathan Senker, VoiceAbility’s chief executive, as the campaign was launched. “In this year of a UK general election, we’re asking all political parties to commit to using the government’s new powers to direct NHS England to urgently improve support for people with a learning disability and autistic people to live in the community and reduce their detention in mental health hospitals.”

voiceability.org

Stolen Lives

Stolen Lives formed earlier this year and features in this issue of Community Living. The campaign group consists of families with loved ones who have a learning disability and/or autism and who are or have been incarcerated in hospitals.

The group is supported by the Wales Learning Disability Consortium, which includes Learning Disability Wales, All Wales Forum of Parents and Carers, Mencap Cymru, All Wales People First, the Down’s Syndrome Association and Cymorth Cymru.

The campaign information states: “There are people with learning disabilities and/or autism from Wales who are living in hospitals. This is a human rights scandal which has been ignored for too long.

“Many people with learning disabilities and/or autism are trapped in hospitals due to a lack of appropriate housing and support in their community. Many are sectioned due to placement breakdown and they have been inappropriately placed.

“The Welsh Government must recognise that sectioning people under the Mental Health Act is not the solution.”

stolenlives.blog

Rightful Lives

Rightful Lives is “a creative campaign and community focused on the human rights of people with learning disabilities and autistic people in Britain”.

The Rightful Lives group began in 2018 in response to people with learning disabilities and autistic people being treated badly in the health and social care system. Campaigners use art, music, poetry, film, song and literature to convey their messages.

Its website states: “We wanted to find new ways to help politicians, policymakers, the media and the public understand the terrible things that are happening to people with learning disabilities and autistic people and make them do something about it.”

rightfullives.org.uk

Homes Not Hospitals

The British Association of Social Workers (BASW) campaign, launched in 2021, “addresses the urgent issue of persistently high numbers of people with learning disabilities and autistic people in inappropriate inpatient units”.

The organisation says too many people with learning disabilities and autistic adults are being failed by the housing and care system and its campaign briefing (on its website) will enable people to champion and advocate for the human rights of those with learning disabilities and/or those who are autistic.

The aim is to influence policy and practice reform, with a human rights focus.

BASW England professional officer Liz Howard said when the drive began: “As social workers, our practice is underpinned by social justice, safeguarding and upholding people’s human rights, and ensuring people’s voices are heard. That is what the Homes not Hospitals campaign is all about.”

basw.co.uk

Homes not Hospital - briefing
Campaign briefing by the British Association of Social Workers

Friends on the line

People detained in mental health hospitals are being supported by peers who understand from first-hand experience what they are going through. Ben Higgins reports

Woman using phone with headphones connected

Imagine feeling isolated, disconnected and misunderstood in a mental health hospital, potentially far from home, friends and family.

Tackling isolation was the driving force behind the Buddies Project – a pioneering pilot initiative that has aimed to improve autistic people and people with learning disabilities’ quality of life in hospital.

Since January 2022, the charity Bild (the British Institute of Learning Disabilities) and the Restraint Reduction Network (which works to reduce the over-reliance on restrictive practices in health, social care and education) have worked in partnership with the Reach Out provider collaborative.

The aim has been to provide hope to people in hospital by giving them access to someone who truly understood their experiences.

Matching

Commissioned by NHS England, the project matched buddees (patients experiencing high levels of restrictive practices) with buddies (people who have experience of being in hospital}.

Weekly online Zoom sessions provided a safe space for confidential conversations where the trained volunteers could offer empathy and friendship to the patients they were supporting.

These conversations spanned topics from hobbies and life plans to ward problems and navigating complex family relationships.

Buddees were referred by ward staff, with some people learning about the project from fellow patients.

Over the course of the pilot, nine people with experience of being in hospital supported 22 patients within seven settings; in total, 315 confidential sessions were delivered.

The 50-minute video calls took place in private rooms with staff present from a distance, ensuring a secure environment for open communication.

Following an initial interview process, the volunteer buddies participated in a four-week training programme to prepare for their supportive role. They reported personal growth and increased confidence, with one volunteer sharing: “I can make a difference and support myself – I feel like it’s not easy but I can do it.”

Buddies were also helped with bi-weekly support groups to ensure a comprehensive network of care was available, focused on relational safety (safe and effective relationships, essentially) and trauma-informed support. This included access to a psychologist in case any conversations triggered difficult or traumatic memories.

“I find it difficult to talk to some staff about my feelings, about stuff. And there are only certain people I’ll go to with, like, personal information,” said one person who was supported through the weekly sessions.

A clinical psychologist involved in the project observed: “We have individuals who previously struggled to socialise now actively engaging with others.”

One ward manager said of those receiving support: “Knowing someone’s been where they are is incredibly empowering.”

Genuine connections have been formed, fostering a sense of community.

Patients meet patients

Buddees in hospital reported feeling “more alive” and looked forward to their sessions where they could talk about everyday life and find out how the person supporting them was thriving in the community.

The project has also helped patients build their social interaction skills with their peers, reducing the feeling of isolation and loneliness on their wards.

The project has been demonstrated to be a powerful model for improving the experience of people in hospital, paving the way for a more holistic approach that is embedded in peer-to-peer support and co-production.

As the project moves towards its final sessions of the pilot, it is seeking funding from integrated care boards in other areas. This type of service can thrive only with sustained funding firmly in place.

People should live in homes not hospitals, and it is imperative that we help support more autistic people and people with learning disabilities on their journey back home. A project such as Buddies provides a unique and personal roadmap back into communities.

For information on the project, contact Marie Willan at m.willan@bild.org.uk

Ben Higgins is chief executive of Bild

Jan Walmsley: elections offer an opportunity to improve lives

It took just one senior politician to hear the message for the groundbreaking Valuing People policy to appear. Here are some issues to raise with the new government

Scott Watkin

It’s now over 20 years since the white paper Valuing People gave everyone hope of a better life for people with learning disabilities, with its principles of rights, independence, choice and inclusion.

That groundbreaking policy lapsed in 2012 and, in England, nothing has yet replaced it.

Since we lost the National Forum of People with Learning Disabilities in 2017, there has been no direct representation of people with learning disabilities and their families in policy circles.

The Good Lives Manifesto created by Learning Disability England (LDE) members could be about to change that if efforts to get politicians to listen pay off.

Those attending LDE’s conference this year – 110 members, both individuals and organisations, and 400 other delegates – shaped the manifesto. It is a series of “big asks” for us all to put to politicians campaigning in local and general elections.

LDE is asking all candidates to sign up to these asks:

  • Be a champion for the rights of all people with learning disabilities, including those from minority ethnic communities and with high support needs
  • Reform social care to uphold the rights of people with learning disabilities and their families
  • Fair pay for people who work in social care
  • Health services that improve health and life expectancy for people with learning disabilities
  • Help people with learning disabilities get paid work
  • Make sure people with learning disabilities have the same access to housing options as everyone else
  • Make this an accessible general election.

Each ask is supported by a series of steps. So the ask to be a champion of rights means legislating to incorporate the UN Convention on the Rights of Persons with Disabilities into UK law.

Each ask builds on existing work by many organisations. The champion of rights ask builds on the Disabled People’s Manifesto and Changing Our Lives’ Small Margins report on the issues facing people from minority ethnic communities.

Where members ask for more topics to be added, such as transport, LDE encourages them to link to existing campaigns such Transport for All.

Pledge cards and a briefing with background information and statistics are available to make lobbying candidates as easy as possible. No one can say they don’t know what to say when they meet people standing for election.

LDE member Scott Watkin supports the manifesto: “Good Lives is so important for us as we are seen to be forgotten people. Good Lives gives ideas to us all to support people to have a good life whether its health employment or living in our own home and to speak up so we can have a better quality of life.”

Now it’s down to us as citizens to use the carefully co-produced manifesto to get the issues facing people with learning disabilities and their families higher up the political agenda.

Never forget, it took just one senior member of Tony Blair’s 1997 government to hear the message for Valuing People to see the light of day. Let’s make it happen again. We could be within touching distance of a policy for learning disability we can all sign up to.

Ian Goldsworthy: a visit to A&E lays bare the crisis of accessible care

My son can get a pass to ride a roller-coaster and wear a sunflower lanyard to get support in a shop – but a visit to a hospital emergency department proves both distressing and fruitless

Speeding ambulance

When Elliott developed epilepsy, it arrived like a thunderbolt. Of course, we’d always known that profound autism and learning disabilities walk hand in hand with epilepsy, but he’d nearly reached 16 without any seizures. Maybe we had dodged that bullet?

That naivety was obliterated one spring day in 2021 when my wife phoned me at work.

A poor connection meant I kept losing her voice and the only word I could make out was “ambulance” – enough to know that I had to drop everything and rush home. There I discovered two ambulances, three paramedics and one very bewildered, barely conscious Elliott.

He’d just suffered his first tonic-clonic seizure. It would be far from his last.

Over the next three years, we learned to live with epilepsy. Learned that some days are good and others are plagued by seizures. Learned that sometimes Elliott would collapse without warning and take hours to recover. Learned that most of the time his medication would control his seizures but that sometimes a big one would still break through.

And so it was, after a big one on a grey afternoon in January, that Elliott and I found ourselves heading to A&E.

The health service is run so hot that it had no capacity to accommodate Elliott in a way that might have resulted in a more successful visit

Taking Elliott to hospital is not something we ever undertake lightly. The strange sights and sounds of this environment are overwhelming for him at the best of times and the hours following a seizure are certainly not those. But maybe we could get in quickly, have a few tests run to rule out anything sinister and get home in time for bed.

Such thoughts lasted as long as it took the automatic doors of the waiting room to slide open. Not a single empty seat. Barely an empty space to sit on the floor. This promised to be a disaster, and so it proved to be.

Twenty hours in A&E

We left hospital some 20 hours later, without a meaningful test having been completed but with a lot of distress caused to Elliott.

He dealt admirably with the initial triaging but by the time we saw a doctor – around six hours after arriving – he was more than ready to go home. He may not be able to talk but he can grab my car keys and hold them in front of my face; what more communication do you need?

In many ways, I wish we’d just called it quits in that waiting room and chalked it up to just another crazy day on planet epilepsy.

But, after waiting so long, I felt like we should achieve something, even if it was just a few basic tests. But even those proved elusive. He wouldn’t tolerate an ear thermometer. A nasal swab was batted away long before it got a sniff of a nostril. Blood tests were impossible, no matter that he’d had a sedative and a nurse on each limb.

As a result, we left hospital the next morning with nothing to show for our time except a sleepless night. We’d got no further along the road of establishing if this seizure was just a quirk of epilepsy or something else.

It goes without saying that there were people in that waiting room having far worse nights than me and Elliott. And in no way would I criticise the doctors and nurses who were clearly rushed off their feet and manning every available bed.

No capacity

But it does frustrate me that the health service is run so hot that it had no capacity to accommodate Elliott in a way that might have resulted in a more successful visit.

It is admirable that accommodations for people with learning disabilities have become more visible and widespread (a long, long way to go of course).

However, it feels wrong that Elliott can get an exit pass to ride a roller-coaster and wear a sunflower lanyard to get support in a shop but healthcare feels almost purposely inaccessible to him.

On this occasion, he returned home in one piece. But, if every hospital trip is so fruitless, will he always?

Mary O’Hara: sick note ‘moral mission’ blames the weakest

Reforms to get disabled people off benefits have long failed to work – but the rhetoric is becoming harsher and implying that they are fleecing the system

Hand holding payment card

Over the past 14 years, successive Conservative governments have targeted benefits with cuts and changes – especially those for disabled people.

Many reforms have centred around getting people into work, even when that is untenable. Several have been criticised not only for failing to address needs due to (among other things) paltry levels of support and harsh sanctions but also for perpetuating the notion that those receiving state assistance are somehow fleecing the system.

Whole swathes of the population have been repeatedly labelled as lazy or dependent merely for seeking help. Often, dehumanising language, such as scrounger or skiver, has been deployed to justify cuts and reforms.

If there was ever any hope that this dangerous rhetoric would be consigned to history, a slew of recent government actions have put paid to that.

As the local elections loomed, ministers not only leaned into the same denigrating playbook – they ratcheted up the language.

Prime minister Rishi Sunak declared he was on a “moral mission” to address what he claimed was a “sick note culture”.

As Learning Disability England said: “The speech from the prime minister mixed up being unwell and being disabled, and it sounded like disabled people are being blamed for problems in society.”

The prime minister turned his rhetorical and policy guns on groups already struggling to access support (and not just from benefits but also from health and social care provision hit by years of cuts).

Sunak insinuated the benefits system was “medicalising the everyday challenges and anxieties of life”, even suggesting that many with mental health problems should not be in receipt of cash benefits but be offered treatment instead.

Proposed reforms announced in April by both Sunak and secretary of state for work and pensions Mel Stride left many reeling.

Cash versus vouchers

Mooted changes to personal independence payments, which help cover some of the additional costs of living with a disability, were met with excoriating criticism across the disability community.

One of the key plans for personal independence payments should the Conservatives form the next government was replacing cash benefits with vouchers.

This should set alarm bells ringing. Apart from possible bureaucratic overload, the concept has dehumanisation and humiliation built in. Just ask Americans.

Here in the US where I live – and based on the same idea of undeserving benefits spongers who can’t be trusted – the official method for decades to deliver “welfare” to people in poverty struggling to pay for food has been a form of vouchers.

The food stamps system (originally, recipients handed over physical stamps at shops in exchange for food) is now called the Supplemental Nutrition Assistance Programme (SNAP).

Benefits are now delivered via a pre-loaded electronic benefit transfer card that mimics a debit card but it comes with restrictions on what recipients can purchase – something that both infantilises and further stigmatises.

Disabled Americans, like their British counterparts, are more likely to experience poverty and food insecurity than others. In the US, around 14 million disabled people rely on SNAP for help with purchasing basic food items.

Benefits are delivered via an electronic card but with restrictions on what recipients can buy with it – something that both infantilises and stigmatises

The name change to SNAP was triggered by the fact that food stamps were acknowledged to be stigmatising. However, changing name and voucher type does not override the core approach.

Such voucher mechanisms are the physical embodiment of state benefits as handouts – another demeaning term.

While they are undoubtedly a lifeline for many people, it has been well documented that, whether it’s handing over stamps or electronic benefit transfer cards, the system can trigger shame and stigma.

There should be no doubt that disability benefits must be drastically improved as well as made more generous. Vouchers, however, would be a lamentable reform in the wrong direction.

‘We know our talents – this is not a tokenistic role’

Leadership roles that combine firsthand experience of learning disability with an operational view gives a wider perspective of a trust and its work. Johann Kyriacou talks to Andrew Bright and Sara Danby about making their positions work and how they can bring ‘magic’

Sara Danby and Andrew Bright

People with learning disabilities are filling roles of power, working alongside colleagues as equals, under the equal leadership model. This is pioneered at Thera, a group of companies that supports adults with a learning disability in England, Scotland and Wales.

Andrew Bright and Sara Danby work together as group lead directors.

Bright came to Thera Trust in 2007 as a service quality director. He uses his first-hand experience of having a learning disability to monitor the quality of support at his local Thera organisation.

His roles since then have included helping set up Thera (Scotland) and working as a learning and development consultant. Recently, he was co-head of development working alongside a colleague who does not have a learning disability.

Sara Danby started in 1998 as an assistant support worker, progressing through various operational support and management roles.

She was promoted to lead director of The Quality Company in 2014; this is a Thera group body that employs individuals with a learning disability as quality assessors to check and report on the quality of support.

Tell us a bit about your work

Sara Danby: Part of our role is to mentor and coach our service quality directors and their executive assistants, finding areas to improve and enabling them to develop professionally.

We actively work with Thera companies to promote membership; this gives the people we support an opportunity to have a greater say in how the one for their area is run. We are able to provide a quality and involvement focus to Thera’s strategy as well as contribute to external work.

Andrew Bright: Co-leadership is in our core beliefs. We’re dedicated to ensuring that people with a disability are in positions of leadership.

The value of the dual perception that comes from having people with a learning disability in key positions is great. With both a personal viewpoint and experience from myself and an operational viewpoint from Sara, we’ve been able to gain a wider perspective – there’s magic there.

What is a typical week like?

AB: At the start, we catch up on Microsoft Teams to discuss the week ahead. We decide who is taking the lead on different work streams, and plan in time to update each other on what we’re doing. We meet as needed to work on any joint responses to pieces of work or correspondence.

An important part of the week is mentoring the service quality directors and supporting their executive assistants. We also support the chairperson, managing director and service quality director to encourage good working practices.

SD: Before meetings, we normally prepare via Teams. We attend a lot of strategy and senior leader meetings together – catching up afterwards to debrief, discuss and plan any actions is really important. We consider both our joint and separate views on subjects and debate as needed. This helps us understand how the other is feeling and ensure both our voices are heard equally.

AB: We attend external meetings together. As well as the Learning Disability England conference, we have been involved in the National Confidential Enquiry into Patient Outcome and Death – a study into managing acute illnesses in people with a learning disability.

This follows our experience in the RESTORE2 Mini project, which aims to identify soft signs of health deterioration and get support. I’ve written about this in Community Living (summer 2023).

SD: Once a month, we spend a day together to map what we are doing and where we want to be. The combination of planning and free thinking helps us to be creative together – this is far more effective when you’re together in person.

Are there difficulties?

SD: At the start, we focused on getting to know each other. There is always some nervousness that comes with a new position, and we were going into a partnership wondering what the other thought. It’s why we put such a strong focus on relationship building.

We took some advice I received “to invest in a relationship with each other before everything else took over”. I went to visit Andrew and we spent time getting to know each other, going on walks and having coffee catch-ups.

AB: I followed advice from a mentor who told me that this is not a management role but mentoring others and to “take off your management hat”. I was struggling with switching from my role as manager to my role as a mentor and it has taken time to adapt.

SD: I have worked collaboratively but never in a equal role and found the partnership could be intense and more tiring than previous roles. While these were a challenge at the start, all are becoming easier with time and patience.

AB: The beliefs of others can be hard to change. While in Thera there is knowledge of how capable I am, people outside can view Sara as the real lead or look down on the role. In some cases, there can be passive disrespect from a person without a learning disability that can be overlooked. It’s a frustrating barrier.

SD: Sometimes, I miss something from Andrew that I feel I should have picked up on, but we have our ways of overcoming this. We always present a united front.

We catch up before a meeting to make sure we both know what is going to be discussed and go over documents we need to read, and we come up with a plan of action.

AB: We know our talents – this is not a tokenistic role.

Andrew Bright and Sara Danby
Andrew Bright and Sara Danby consider each other’s views and present a united front. Photo: Thera

What are the benefits?

AB: It has created progression opportunities for people with a learning disability inside the company and shows that Thera is willing to invest in them – this is a role of both equal hours and pay.

For those outside Thera, it shows the difference that having someone with a learning disability can make and how their experiences bring such richness and diversity to a company in leadership roles.

What have you enjoyed and what are you looking forward to?

AB: We’ve loved the time spent together; karaoke in the car and meals out have been highlights in building our relationship.

It was amazing speaking at the Learning Disability England Conference earlier this year alongside social enterprise Bemix.

We are working on a development programme for the service quality directors and are finding new ways to develop company membership.

SD: We are looking forward to more opportunities to inspire people with a learning disability to push for equal leadership positions. n

Johann Kyriacou is communications assistant at Thera Trust

Advice: from realism to personality

Andrew Bright and Sara Danby share some tips for employers and those taking on equal leadership roles

For organisations

  • Consider the scope, the strengths needed by each person and the compatibility of those who will be working together
  • Examine the realities and budget implications
  • Appraise value. How will you measure impact and know if the approach is working well and making a difference?

For people

  • Get to know each other, backgrounds and strengths: what are your values and hobbies? What frustrates you and how does a bad day look? How will difficult conversations go?
  • When working separately, find time to debrief and keep each other up to date
  • Find time for free thinking and creativity with each other

Keeping researchers on board and a humanistic approach to support

Studies look at the unintended consequences of coproduction and preventing these, and at the discomfort that can arise with a humanistic approach to support, says Juliet Diener

Community Living

Care is needed to ensure involving people as equals on research is not counterproductive, and a humanistic approach to support raises unease about going outside comfort zones.

Making coproduction work

Dobel‐Ober D, Moloney P, Millichap S. Hard to reach, or struggling to be heard? Real‐life experience of coproduction with people with learning disabilities. British Journal of Learning Disability. 21 April 2024.

Coproduction brings service users and providers together to consider planning and delivering services for learning disabled people.

The benefits of coproduction include social inclusion and a boost to employability and wellbeing. It is also a positive model to use in research studies.

This study notes that while coproduction is applauded by the disabled community, there has been some criticism of the time and cost required as well as over its effectiveness.

This paper presents two examples of coproduction in the UK.

The first describes the experience of a group of learning disabled men who worked with a consultant to support the creation of a user‐friendly version of a local authority’s vision statement.

The second example is about an attempt to secure funding to develop and evaluate a community project for learning disabled people.

Both examples reflect two intertwined problems in coproduction, which are “the drive to create fast results and the challenges of time and resource allocation that service users and professionals face whenever they attempt to coproduce work in a meaningful way”.

In the two case studies, the time required as well as the need for accessible documents added to the challenges of leading a study while working with learning disabled adults.

The conclusion is that when research is completed in haste, it can be counterproductive and leave disabled participants feeling disempowered. This in turn damages their confidence and trust in the process.

The study sets out suggestions to support coproduction, such as planning so participants feel safe enough to use their voice and ensuring resources are accessible.

In particular, coproduction must be thought about as valuable for the research study and not tokenistic.

Humanistic potential

Neuman R. Humanization: The humanistic perspective as a guide for supporting people with intellectual disability. British Journal of Learning Disability. 13 November 2023. 

Shifting from a medical to a humanistic view of learning disabled people offers a life that feels meaningful, with independence and feelings of being valued equally.

This qualitative research study was conducted in a residential community which applied humanistic values to working with learning disabled adults and focused on housing, health, employment and leisure.

Semi-structured, in-depth interviews with 30 people in various roles involving providing support were carried out.

At times, the need to push the individual out of their comfort zone left them unsure.

The findings indicated a conflict. While support providers demonstrated they understood and desired to work using humanistic values, at times, the need to push the individual out of their comfort zone left them unsure.

To help support providers in resolving this dilemma, the author suggests a “humanization” model, with four theoretical principles:

  • A meaningful life: enable and encourage the person to face new experiences and practise decision-making
  • Autonomy: individuals can and are entitled to make their own decisions and should be encouraged to develop and express their priorities
  • Holistic perspective: people are more than their abilities and difficulties
  • Interaction based on dialogue: this should first and foremost acknowledge people’s abilities to understand, choose and face challenges.

The author suggests that the next stage in this area is developing tools that extend beyond the theoretical principles.

Outside and outspoken

Having lived in institutions for decades, Mabel Cooper was determined they should be torn down, and published her life story to educate and inspire others. Susanna Shapland reports

Mabel Cooper

Mabel Cooper was found at a few weeks old on the streets of Islington in 1944, where her mother was begging. She was taken into care and never saw her mother again.

She spent the first 13 years of her life in a string of institutions across England. Never having the opportunity to attend school, she could not read or write.

Aged 13, she was sent to St Lawrence’s Hospital, a long-stay “mental handicap hospital” in Caterham, Surrey. Years later, she was to discover that her hospital records labelled her an “imbecile”, “educationally very backward” and “dull and slow in response”.

She found the hospital noisy and oppressive. Moved to an adult ward at 15, she was given manual work to do rather than education or training. Inmates were not allowed personal possessions as there was simply no storage space, and instead had to use a shared cupboard of clothing from which to dress themselves each day.

Despite disliking St Lawrence’s, Mabel was forced to stay for nearly 20 years, finally leaving aged 31 to live in the community. Reflecting on her time in St Lawrence’s convinced her that long-stay hospitals should all be pulled down.

Cooper found supported living beyond the hospital walls to be initially bewildering but ultimately liberating.

‘You do what you want to do’

Cooper joined self-advocacy organisation People First and was initially in the Croydon branch where, eventually, she became chair.

Later, as chair of People First: London, she worked to encourage others to speak up for themselves and make their voices heard on issues that directly affected them.

In her words, “you do what you want to do and not get anybody else to do something for you”.

The drive to speak up for herself manifested in her desire to tell her life story.

A serendipitous meeting between Cooper and Open University lecturer Dorothy Atkinson in 1994 led to an opportunity for her to do exactly that. A combination of her recollections and the pair’s rigorous archival research led to the publication of Mabel’s life story in Forgotten Lives in 1997, later made available on the Open University website. This account was one of the first of its kind.

Delving into her past was often painful. Labels attached to her were cruel and dehumanising. She also discovered relatives she did not know existed

Cooper was very clear she wanted to not only understand her life’s history and fill in some of the blanks from her chaotic early years but also use it to educate people who had no awareness of what she and people like her had experienced.

She hoped that telling her story would inspire other people with learning disabilities – including those who had similar experiences in long-stay institutions – to tell their stories and thus reclaim their past.

Delving into her history was often painful. The labels that had been attached to her were dehumanising and cruel. She also discovered relatives she had never known existed.

Through sharing her story, Cooper also raised awareness with professionals and the public about life as a resident in a long-stay hospital and beyond. She spoke at several national and international conferences, shining a light on the differences between official records and the reality of lived experience. Through her talks and publications, she contributed to the training of nurses, social workers and teachers.

She also took time to go into schools and educate children about their learning-disabled classmates, thus reducing ignorance, stigma and bullying.

In 2010, Cooper was awarded an honorary degree from the Open University in recognition of her research and educational work.

Reflecting on all she had achieved, and holding it in contrast to the damning notes in her records at St Lawrence’s, she wrote, “they were wrong to make those assumptions. I’ve proved them wrong”.

Mabel Cooper was the guest of honour at the St Lawrence site when they demolished the hospital in the 1990s. She died in 2013.

Cooper M (Part I with Atkinson D). Part I: Mabel Cooper’s Life Story; and Part II: Mabel Cooper: My Quest to Find Out. Open University. 1997. 

Advocreate. No Longer Shut Up: Finding Mabel Cooper’s Voice. 2015. 

Getting to grips with the theory

All researchers need to understand theories. So inclusive workshops, with topics chosen by self-advocates, are being organised through an international partnership. Kate Green and Nicola Grove report

Professor Tom Shakespeare with group

To be a researcher, you need to know about theory. Right?

Theories are important because governments and organisations use them to plan policies for health, social care and education, write Kate Green and Nicola Grove.

But theory – an idea or set of ideas designed to explain facts or events – can be difficult to understand. There is a lot of jargon. Yet researchers with learning disabilities need to understand theory.

People explore big ideas through drama, games and role play, and discuss relevance to their lives

So a partnership between the Open University, the universities of Koblenz and Leipzig in Germany, the Barod research cooperative in Wales (Barod is the Welsh word for “ready”) and co-researchers at Rix Inclusive Research at the University of East London has been running online workshops about the big ideas that influence the way we think about disabilities.

The Big Ideas that Changed the World of Disability workshops are for activist researchers, students and academics. Each workshop focuses on one theory and an expert gives a short accessible talk.

Since 2021, we have held 13 workshops. Since 2023, activist researchers and self-advocates have led the workshops.

The workshops encourage people to explore big ideas through drama, games and role play, and discuss how they are relevant to their lives.

Our first speaker, who presented on the social model of disability, was academic activist and writer Professor Tom Shakespeare.

Workshops have explored normalisation theory (a sociological theory), educationalist and philosopher Paulo Freire’s ideas about education, eugenics, Buddhist attitudes to disabilities and the work of philosopher and historian Michel Foucault. An advisory group of self-advocates helps choose the topics.

Researchers from Leipzig presented on their book Power in School, and on philosopher Pierre Bourdieu’s ideas about cultural capital – how we identify what groups people belong to and who has status.

The Rix team led a workshop on ethics, and Barod presented self-advocate Alan Armstrong’s ideas about inclusive research.

All this work has been made possible by grants from the universities and the Rix-Thompson-Rothenberg Foundation.

On average, 24 people attend each session. They include those from England, Germany, Ireland, and Wales. Language differences have proved to be no barrier.

Around half of the participants self-identify as having learning disabilities or autism. We do not formally categorise people as it is against our principle of being an inclusive, respectful learning community.

Activist members do not hesitate to speak up if there is too much jargon. Because we have been together for a long time and know what we are doing, it is now difficult to tell who has a disability.

Barod has evaluated the workshops in 2022, with the findings to be made public soon.

Big Ideas continues to inspire us with new topics to explore. If you would like to join us, please get in touch on ngrove@uel.ac.uk.

All the presentations and accompanying information packs are free to download from the University of Koblenz website.

Kate Green is a poet, lived experience and advocacy campaigner; Nicola Grove is professor for profound and multiple learning disabilities at Rix Inclusive Research, University of East London

Power meets history

Being part of this community has built my confidence and my debating skills, writes Kate Green.

I recognised from my own life the ideas about power and institutions, the history of learning disability, and normalisation and the need to fit in.

The workshops are at my level of capacity, and I enjoy finding out how other people think.

Justice played out

A play on Connor Sparrowhawk’s life, his preventable death and his family’s fight for justice makes us rage at monumental indifference and cry at the loss of a young man, says Simon Jarrett

Laughing Boy cast on stage

“I died this morning. In the bath. I’m dead now. Am I dead, Mum?”

And so begins Stephen Unwin’s devastatingly powerful play, Laughing Boy, about the very preventable death of Connor Sparrowhawk, who drowned in a bath at the age of 18 while in the “care” of an NHS assessment and treatment centre on 4 July 2013.

Laughing Boy

Written and directed by Stephen Unwin

Jermyn Street Theatre, London, May/June 2024

Unwin’s play is a stage adaptation of Sara Ryan’s book, Justice for Laughing Boy, which tells the story of her son Connor’s death and the family’s lengthy fight for justice.

This culminated in an inquest jury verdict in 2015 that found Southern Health NHS Foundation Trust guilty of “very serious failings” and, in 2019, a record £2 million fine for the trust after a prosecution by the Health and Safety Executive.

Laughing Boy on stage captures perfectly the many layers of Ryan’s book. A mother’s anguish, despair and rage at the death of her much-loved son. The seemingly impregnable, inhuman, bureaucratic granite wall thrown up by the NHS. The depths of love that powered Connor’s devoted siblings from such a young age to continue, along with their mother, the campaign for justice for the brother they adored. The array of friends and supporters who were there for the family throughout and helped them over the line, particularly at times when all seemed lost.

A cast of seven play all the parts. Those playing the four siblings and stepdad Rich also appear as trust leaders, staff, barristers, supporters and others. These five actors glide backwards and forwards between characters with great dramatic panache – the pace onstage never lets up and, even if you know the whole story well, the tension and drama of it all still holds you taut.

Some characters, such as Katrina Percy, the disgraced chief executive of Southern Health, come across as grotesque caricatures – then I think back to news coverage and she was very much a grotesque caricature. There is no other way to play her.

When the unit psychiatrist Dr Giri Jayawant rang Ryan, who was on a bus going to work, to tell her Connor had been taken to hospital after being found unresponsive in the bath, she kicked off the conversation by saying, “Lovely day, isn’t it?” That isn’t dramatic caricature – that’s what she said.

In the most heartbreakingly poignant moment, Connor walks slowly from the stage, taking one last, longing look at his family as a door closes behind him, shortly before the final scene, his funeral. Until then, he has been on the stage throughout, asking questions, enjoying the company of his family.

His last question before he leaves is “Why, Mum?”

“I don’t know… I just don’t know,” replies Ryan.

And then there he is – gone. Because, of course, he hasn’t been with the family since he died on that hot July day. He’s been nowhere, sent there by the monumental indifference of a medicalised care system that never saw the laughing boy, just a bunch of symptoms they forgot about in a bath.

But, then again, here he still is, making us laugh, making us angry about what happened to him, making us rage at the sheer callous, careless, stupidity of it all, and making us cry about the beautiful young man who wasn’t allowed to have the rest of his life.

He is, indeed, still among us, affecting our thoughts, instantly recognisable in our minds as the quirky, insightful, unforgettable person that he was. This is all thanks to his incredible loving and fighting family and their supporters, the unstoppable power of Ryan’s voice and, now, a marvellous and beautifully fashioned telling of his story created by Unwin.

Each of these has done Connor Sparrowhawk justice – a justice denied him when he was alive.

Dressed to thrill

Two dancers wowed the audience at Sadler’s Wells, one in bespoke dress created for the occasion. Juliet Diener and Sam Carlisle report on a creative collaboration

Denecia Allen and Alice Bellini on stage at Sadler’s Wells

As a child, Londoner Denecia Allen lived close to Sadler’s Wells and often passed by the globally renowned theatre; she thought it was a place of wonder.

Earlier this year, the 18-year-old, wheelchair-using dancer took to its stage to duet with the English National Ballet’s Alice Bellini. The pair performed at an event that brought together disabled, learning disabled and non-disabled dancers.

The Empower In Motion gala was a dream come true for Allen. It was made even more magical by the bespoke, jewelled dress she wore for her Sadler’s Wells debut, created by award-winning disabled designer and advocate Victoria Jenkins.

Allen said: “It was unreal. I had to pinch myself to check it was real. It was magical as if I was dressed to go to the ball. Amazing to be on a stage where I had watched others and now it’s me.”

A spirit of collaboration across the disabled community made the evening possible.

Empower In Motion showcased well-known classical repertoire and original contemporary styles of inclusive movement, brought together from across the UK and beyond. Performers included stars of the American Ballet Theatre and Berlin State Ballet, telling moving and inspiring stories of unity, resilience and the transformative power of art.

London-based charity icandance, which we are involved in and where Allen has honed her ballet and contemporary dance talent, brought Allen and Bellini together to create Reunion. The piece celebrated a coming together after the pandemic as well as a coming together of difference and the joy that is created when dance is used as a tool to transcend differences.

The two women formed a close friendship and their duet is a beautiful reflection on Bellini’s world, which is driven by perfection, and Allen’s experience of living in a world that is far from perfect for disabled people.

When the pair were invited to perform the piece as a key part of Empower In Motion, we approached designer Victoria Jenkins to create a bespoke dress for Allen.

We were thrilled when Jenkins said yes. We had seen her appearances on Channel 4’s Unique Boutique where she creates stunning outfits for special moments in disabled people’s lives.

Her designs change perspectives through fashion by making visible the often unseen beauty of different bodies. Allen’s dress was based on the idea that disability should never be hidden. It shaped Denecia’s body with each graceful move.

In design meetings, Jenkins listened to Allen’s challenges with conventional dance dresses and created a stunning teal green, long-sleeved dress in a fabric that enhanced the dancer’s performance in her wheelchair, allowing her movement to flow.

Just as the duet showed two very different worlds coming together in celebration, the design collaboration exemplified the power of adaptive fashion in breaking down barriers and creating opportunities for all individuals to share their talents.

Jenkins said: “The entire performance was breathtaking, I had tears in my eyes the moment the lights went down. Nothing will beat watching Denecia performing with Alice in her bespoke costume. As someone who wanted to be a ballerina, being able to have a small part of myself on that Sadler’s Wells stage was profound for me.”

All proceeds raised on the night went to the Children Today Charitable Trust as part of its 30th anniversary. The trust provides specialised equipment and care for families across the country.

Juliet Diener is chief executive and Sam Carlisle is a trustee at icandance

Review: ‘Astonishing ballet

Astonishing ballet

Professional dance requires precision and perfection. Where does that leave those with a different body shape or type of mind? Simon Jarrett spends an evening finding out at Sadler’s Wells

Denecia Allen and English National Ballet’s Alice Bellini

From the perfectionist precision of ballet to the synchronised complexities of folk dance to the specific body shapes and sequencing of ballroom and Latin, professional dance is a demanding and exacting sphere.

Empower in Motion

Sadler’s Wells Theatre, London
February 2024

One of the measures underlying the aims of high-level dance is sameness – the corps de ballet moving or standing in perfect harmony, the seamless mass movement of the folk-dance troupe, the melding of the ballroom partnership into a series of pre-ordained, strictly determined shapings.

So where does this leave those with a different body shape, who may lack a limb, or use a wheelchair, or have a different type of mind, for whom these aspirations of perfection may be difficult, undesirable or even impossible to achieve?

Can the disabled dancer operate within this realm? Is there such a thing as “inclusion” at the high table of professional dance?

We gained some interesting answers and insights into such questions at Empower in Motion, a night billed as “a ballet inclusive” at London’s Sadler’s Wells Theatre.

Sadler’s Wells is a world-leading, high-capacity dance venue, and it was a full house, so that was a good start. The evening was a fundraiser but also an awareness raiser for the Children Today Charitable Trust.

There were acts from the world of both disabled and non-disabled dance including Stopgap, Parable, Propel, icandance, English National Ballet, National Youth Ballet and the Royal Ballet School.

Top of the bill was Joseph Powell-Main, who describes himself as a “freelance dancer on crutches and wheels”.

As a young person, he was a dancer at the Royal Ballet School until complications after surgery and a serious car accident meant he became disabled. After three years, he returned to dance, becoming UK Para Dance UK champion.

On the night, Powell-Main’s world premiere solo performance of Passionately Defiant to the music of the Rolling Stones’ Paint it Black was a jaw-dropping showstopper.

They danced beautifully and movingly because of the fusion they achieved, the power of their movement and their evident connection

At one point, he rose from his wheelchair without his crutches and pirouetted. It was both beautiful and astonishing – the audience seemed to freeze, captured by an unforgettable moment.

There were collaborations, solos, duets and single company performances. For me, the standout combination of icandance’s Denecia Allen and English National Ballet’s Alice Bellini.

As well as being a dancer, Allen uses a wheelchair and has a learning disability. Bellini hails from the higher reaches of the ballet world. Together, they danced beautifully and very movingly because of the fusion they achieved together, the power of their movement and the evident connection between them.

Allen wore an adaptive dance costume specially created for the performance by award-winning disabled designer Victoria Jenkins. It was gorgeous enough to add to the feeling of a spell-binding, deeply original moment.

Rising stars

It was a fine night that showcased three things: the talents of a fine array of young disabled dancers; the talents of some superb rising stars from the world of ballet; and what happens when you bring all that exceptional talent together across the disabled/non-disabled divide.

The great pioneer of inclusive dance Peter Brinson wrote about the power of modern dance to emphasise the expressive power of the body, and to use the floor, the ground, rather than the elevation and lightness of ballet, with its constant search for the air. At Sadler’s Wells, we saw these two forms come together.

And there was the perfection, this coming together of different body types to create beautiful dance. You don’t lose perfection if you open up dance to all – you find it.

Feature: Dressed to thrill

Banjos in the orchestra of business

An edited extract from a new book on neurodiversity in the workplace

An estimated one in seven people in the UK and up to 33% of American adults are neurodivergent, yet 26% of employers said they do not name neurodiversity in their inclusion policies and procedures.

If your organisation has outward-facing messaging that you are an inclusive, supportive place for neurodivergence, people will be attracted by this positive image.

It may result in expanding your network, gaining more customers, successfully bidding for more contracts, developing a reputation for diversity and equity and, eventually, expanding your pool of talent to include neurodivergent skills and expertise on your team.

A staff team with senior managers who prioritise wellbeing and support is a more productive, focused and driven team. And a workplace that prioritises wellbeing is likely to have happier and healthier employees.
Being supported at work results in fewer days off sick and more days dedicated to developing knowledge, learning and understanding. We’ll get more done if given the tools and support to do so. And we’ll get loads done if you play to our strengths and what we can do.

Your time and commitment to learn how to create psychologically safe and brave spaces will generate a wider pool of highly skilled staff and job applicants. Your team will grow.

Most successful teams are diverse. If everyone is the same on a football team or in an orchestra, with identical skills and abilities, we a) wouldn’t win any football matches, and b) would struggle to have an orchestra full of variety, different sounds, textures and instruments. We can’t all play fiddle. Drummers are needed too and, dare I say it, banjo players. (I’m amazed I’ve managed to get a banjo joke into a book about neurodiversity.)

Teams need and thrive off difference. What employer wouldn’t want to utilise the skills and talents that all of society has to offer?

Alice Hewson is a journalist and youth worker. Read her piece for Community Living on what employers need to do to create more inclusive workplaces

How education policy fails children

The system for pupils with additional needs was well intended but in practice is expensive, complex and sees children as a problem rather than needing help, says Anne Longfield. Below is an edited extract

There is so much evidence about children with special educational needs and disabilities (SEND), autism, learning disabilities and additional needs struggling in the classroom and too many falling out of school as a result. Additional needs go unidentified or misdiagnosed and are labelled as “misbehaviour”, which leads to suspension or permanent exclusion.

Young Lives, Big Ambitions by Anne Longfield CBE

Young Lives, Big Ambitions

Anne Longfield CBE

Jessica Kingsley Publishers, 2024, £14.99

The policy for children with SEND in school was set by the Children and Families Act 2014, which is one of those pieces of legislation with very good intentions but lacking the follow through to make these aims a reality. The act requires education, health and social care agencies to work together more closely than they have in the past.

However, its focus it has put on education, health and care plans (EHCPs) as the main way of helping children has driven support towards those who have a higher level of needs. This has meant that children with lower levels of SEND often receive little support, leaving problems to develop and escalate.

It has also driven a high-cost system, access to which is often contested through litigation and appeals. I have met many parents who tell me they didn’t apply for a plan because the whole process was so onerous they couldn’t face it.

What is often so striking about the conversations I have with parents whose children with SEND are not receiving support is the lack of apparent purpose and clarity in the response to the way their young children were behaving in school.

Rather than behaviour being seen as a warning sign that triggered specialist support in school, they had been dealt with through an endless carousel of referrals and assessments, sometimes taking many months and even years, disrupting their education along the way. We focus on the child as a problem – we don’t look at how we can change the system.

Among the group of mums who I met in north London, whose children had all been excluded repeatedly, six of the seven children who had experienced either a fixed-term or permanent exclusion had been diagnosed with SEND.

Six of the seven children who had experienced a fixed or permanent school exclusion had been diagnosed with special educational needs

Some of the children had been sent to AP – alternative provision: places for pupils who can’t go to a mainstream setting – and one child to a pupil referral unit, where they were the youngest child. They sat by themselves in an empty room as all the other children were so much older. What a depressing thought: a five-year-old, who should be excited to go into school, see friends and have fun learning, sitting without any children of his own age.

Unsurprisingly, the parents I met were horrified and did not think that this kind of environment was going to help their child or keep them safe, even more so when they visited and found there were police and high security on site.

So many families have told me that they give up on applying for help – or so often get their applications rejected – that you have to wonder if the middle classes are the only ones who can get through the EHCP hoops without help.

There are plenty of signs that many children are not getting the help they need because they don’t have a plan to guarantee help. With such a complex process, it is easy to see why some parents just give up.

At one AP school I visited in east London, an independent assessor judged that 85% of children attending should be eligible for an EHCP. Unfortunately, just 15% had a plan. The others were left to struggle without help and in some cases become more vulnerable to violence and crime.

If the EHCP approach is going to be more than a middle-class offer, it needs to become more accessible and support needs to be available for children much earlier to prevent crisis.

Locked up and out of sight by law

David O’Driscoll looks at a Victorian law that led to people being put in institutions – and why researching their histories can prove difficult

Award-winning Victorian scholar Sarah Wise’s book on the 1913 Mental Deficiency Act concerns individuals detained for social or moral reasons under the moral imbecile category, introduced in this legislation.

The Undesirables: the Law that Locked Away a Generation by Sarah Wise

The Undesirables:
the Law that Locked Away
a Generation

Sarah Wise
Oneworld Publications, 2024, £22

Moral imbecile seems to be a category based on dubious claims about someone’s behaviour.

The book has five parts and several appendices, one on how the act worked.

It includes a whole cast of characters. For example, Winston Churchill, home secretary at the time of the act, was a keen supporter of sterilisation. Rather than admission to an institution, he suggested “a simple surgical operation so the inferior could move freely in the world without causing much inconvenience to others”. Unlike many countries, the UK rejected sterilisation.

Among the chapters I enjoyed most was one on the National Campaign for Civil Liberties (now Liberty), which called the 1913 law “the gravest scandal of the 20th century”. Reading about its role in the campaign against it was moving and inspiring.

At the centre of Wise’s account are the patients’ experiences. These include the oral histories of David Barron and Mabel Cooper who, like many, were institutionalised for dubious reasons.

The real sadness is there are still many case histories from which we could learn. Cooper noted how lucky she was to find her hospital records as her NHS trust had destroyed the majority of these.

As Wise notes: “I have only been to scrabble together a few of these case histories. The rest is silence.”

I hope that her excellent guide will develop more curiosity into this act and its consequences; for me, the main thing is to develop more curiosity into people’s lives and their history today.

Award win for Community Living columnist

Community Living’s Mary O’Hara has won a prestigious journalism award for her writing in the magazine

Mary O'Hara with award

Mary O’Hara, who joined the magazine as a columnist as part of its relaunch in 2023, has scooped first prize in the LA Press club’s Southern California Journalism Awards.

Judges awarded US-based O’Hara the prize for best columnist in the foreign correspondent category, commending the journalist’s “strong voice when tackling important issues, such as arguing for maintaining health funding for the poor and disabled in the UK and the US”.

Mary O'Hara award close-up

O’Hara said of her work on Community Living: “It’s flattering to win an award, but what really matters to me is if it shines a little bit more light on the issues I care about – and those that this exceptional magazine focuses on.”

Mary’s powerful writing compares and contrasts support for people with learning disabilities in the UK and US, offering readers unique insight and analysis.

Mary joined our small team as part of editorial development plans to expand Community Living’s coverage and grow its journalism; we’re enormously proud of her and grateful to our sponsors, trustees and advisory board for the support that is enabling us to become a platform for award-winning journalism.

More of Mary’s work can be found on her Community Living page and at maryoharaproductions.com

Saba Salman: Arts can shine a light on many an overlooked area

Arts is one activity that can help push for social change – and right now, trying to make a difference is vital

Frozen Light: The Bar at the Edge of Time

In July, it will be 11 years since the preventable death of 18-year-old Connor Sparrowhawk sparked the national movement #JusticeforLB.

Connor, known as Laughing Boy or LB, was autistic and had a learning disability and epilepsy. He drowned in the bath in a Southern Health NHS Foundation Trust short-term assessment and treatment unit in Oxford.

In this issue, Stephen Unwin describes how he created the drama Laughing Boy, premiering soon. Unwin, a writer, director and parent of a young man with learning disabilities, based the play on the powerful book Justice for Laughing Boy by Connor’s mother Sara Ryan. The drama will hopefully tour after shows in London and Bath, reflecting how the arts can shine a light on issues and communities that are too often overlooked.

A similar ethos drives theatre company Frozen Light’s multi-sensory work for audiences with profound disabilities. Its directors say theatre is not just an art form but also can teach us about “how to approach the world a little differently”.

The value of a different perspective emerges in our interview with artist Thomas Owen, who describes how his creative process is encouraged by his support staff.

Our article on Square Pegs Arts’ album of music by young people with learning disabilities reveals how a focus on inclusion and creativity has brought benefits for all involved. That is true for the families joining songwriting and recording sessions and the professionals they collaborated with.

The impact of creative arts is summed up by our columnist Shalim Ali, a DJ, campaigner and self-advocate: “Music makes me feel excited and happy and makes me want to dance. There’s nothing better than being out with friends and dancing.”

Arts is just one of many activities that can push for change. This is more important than ever given the government’s failure to support social care, most recently by leaving it out of the spring budget.

As Stephen Unwin says of his play, a change has to come and perhaps his work and that of others can “in some small way” help make a difference.

In brief

Budget ignores social care, an election is won and carers are sentenced. Saba Salman reports

A wheelchair and non-wheelchair user using the accessible see-saw

Policy and politics on national event agenda

More than 500 people attended Learning Disability England’s (LDE) annual conference, which aimed to enable individuals with learning disabilities to learn more about policy and politics.

The group’s annual spring conference was formed of three events – in London, Leeds and online – and was called Politics and Policy: Influencing and Leading Change.

The aim was to empower people to think about elections and their right to vote.

Attendees – self-advocates, family carers, supporters, organisational leaders, researchers and policy experts – shared examples of influencing and policy for LDE’s Good Lives project.

This movement for change, launched in 2022, involves sharing what it will take for everyone with learning disabilities to live a good life.

Conference speaker and self-advocate Aisha Edwards from Lewisham Speaking Up said: “The conferences are good because people can get their voices across.”


Film festival reaches more cities in the UK

This year’s Oska Bright Film Festival saw more than 100 films made by or featuring autistic people or people with learning disabilities being screened.

The biennial festival took place over a week in March at various venues in Brighton. This year, screenings also took place in cities including Birmingham, London, Manchester and Oxford.

People with disabilities are under-represented in the film industry, so the festival raises awareness about inclusive filmmaking as well as showcasing creative talent.

The Oska Bright Film Festival was founded in 2004 by learning-disabled filmmakers frustrated at having nowhere to show their work. It screens films from the UK and abroad.

Head programmer Matthew Hellett said the event “gives the mainstream film industry an insight into the world of learning disabilities that they can’t see”.


Legal adviser runs final fundraiser

Social care legal agency CASCAIDr, a long-time supporter of this magazine and a lifeline for many people and families, launched its final fundraiser in February.

The adviser is to close but has been crowdfunding a legacy campaign: obtaining barristers’ views on Care Act issues. The fundraiser is on the Crowdjustice website.


Everyone can come out to play in adapted ground

A new inclusive playground in London (photographed above) encourages families, children and adults of all abilities to spend leisure time together.

The Fair Play playground in Barnet, north London (see image), is a space for disabled and non-disabled people of all ages.

It features communication boards, wheelchair-accessible picnic areas, inclusive play equipment that spins, rocks and swings, along with sensory panels for touch, movement and sound.

Research from Scope has shown that 49% of parents with disabled children say there are accessibility issues at their local playground.

Fair Play was founded by mothers Nathalie Esfandi and Deborah Gundle, driven by their children’s experiences of being excluded from play. They raised funds and worked alongside Barnet Council, which contributed £100,000 towards the project.

Gundle said: “I know how difficult it is for families like ours to be able to play together. Seeing the equipment being used by disabled and non-disabled children side by side is incredibly rewarding.”


News briefs

Patron role for Phillips

Actor Sally Phillips and her son Olly have become patrons of the Down’s Syndrome Association. Olly, who has
the condition, said he was “a bit nervous” but that it was an honour “and we will do our best to bring about good change”.

Stuck in hospital: why?

The difficulties experienced by people with learning disabilities and/or autistic people when trying to leave long-stay hospitals have been set out in a report. The Why are We Stuck in Hospital? report, by the University of Birmingham and rights-based organisation Changing Our Lives and funded by the National Institute for Health and Care Research, describes barriers such as complex funding and a failure to plan support after hospital around the individual.

Baby book for new parents

A new picture book from charity Beyond Words aims to open conversations with adults with learning disabilities about becoming parents. Loving Babies is the second in its series of word-free picture books exploring pregnancy and parenthood. Around 7% of people with learning disabilities in the UK will become parents but have few resources to help them.

Brothers tell their story

Manni and Reuben Coe, whose book brother.do.you.love.me describes how Manni supported Reuben to move from a life of isolation and mental ill health in a care home for adults with learning disabilities, will discuss their story at London’s Southbank Centre. The event is on 14 April in the Purcell Room of Queen Elizabeth Hall.

What’s on our radar

Disability charities reacted with dismay to the spring budget because of its failure to invest in social care.

“Whilst investment in early years and SEND [special education needs and disabilities] is welcome, to continue to overlook social care is to cut essential services for disabled people and their families,” said Rhidian Hughes, chief executive of the Voluntary Organisations Disability Group.

This came after research highlighted an increasingly desperate need for funding.

The annual Sector Pulse Check, commissioned by learning disability charity Hft and Care England, which represents independent adult social care providers, painted a bleak picture of rising demand, underinvestment and workforce pressures.

  • The government’s Disability Action Plan – 32 steps to make the UK “the most accessible place in the world” – has won some praise for its commitment to make government communications more accessible and its promise of financial support for disabled people seeking election (to be introduced after the general election). However, its reception was generally lukewarm, with a joint statement from Disability Rights UK, Inclusion London and Disability Peterborough describing the plan as “weak”.
  • Mar Galcerán made history as Spain’s first parliamentarian with Down syndrome. Elected to Valencia’s regional assembly, Galcerán said she wants to be seen as a person, not for her disability.
  • Four carers convicted of abusing patients at Whorlton Hall between 2018 and 2019 have been given suspended sentences. The NHS-funded secure hospital in County Durham, privately run by Cygnet, has since closed.

Ability to work in focus

How people are assesssed regarding whether they could do some form of work is to change, so more will have to pursue activities related to employment. Charlie Callanan has good and bad news

Typing on a laptop in bed

Changes to the work capability assessment (WCA) are being planned.

The Department for Work and Pensions (DWP) made the announcement late last year, following a short consultation. The changes will be introduced no earlier than 2025.

The WCA is crucial to claimants with a disability or long-term health condition. It is the assessment used for employment and support allowance (ESA) and universal credit (UC) to decide whether a claimant has limited capability for work (LCW) or limited capability for work-related activity (LCWRA).

This determines: for UC, which, if any, “work-related conditions” the claim must meet; and for ESA whether the claimant is entitled to the benefit at all. If the claimant is found to have LCWRA, they are entitled to a higher rate of UC or ESA.

Mobilising and getting about

The DWP plans to implement the following changes to certain WCA activities and descriptors.

It will make some changes to the “mobilising” activity (relevant to physical disability) and the “getting about” activity (relevant for mental health difficulties).

The DWP’s rationale for the changes is that “new flexibilities in the labour market mean that many people with mobilising limitations can undertake some form of tailored and personalised work-related activity with the right support”.

Changes about “mobilising activity” mean a score of 15 points for being unable to “mobilise” more than 50 metres will no longer place claimants in the LCWRA category.

So, unless a claimant can qualify for LCWRA status through another activity or an alternative route (such as substantial risk: see below), the claimant will be found to have LCW only.

This means they will have to undertake some work-related activity and will not get a top-up to their benefit.

Regarding “getting about” activity, the DWP said it would be changing the points awarded for most descriptors but has not said what these amendments will be.

However, the highest scoring descriptor – for claimants who cannot get to familiar places on their own – will be retained. This descriptor awards 15 points and LCW status (but not LCWRA).

Substantial risk

Substantial risk is also affected. Broadly, this part of the WCA (which is in addition to the main points-based assessment) may apply where the health of a claimant would be at substantial risk if they were found not to have LCWRA so have to take part in work-related activities.

There are plans to amend the rules around claimants who obtain LCWRA status via substantial risk so this will apply only in exceptional circumstances.

The DWP says: “We will specify the circumstances, and physical and mental health conditions, for which LCWRA substantial risk should apply. This will include protecting and safeguarding the most vulnerable, including people in crisis and those with active psychotic illness.”

Disabled people with limited capacity for work related activity will be able to try out work without the threat of their benefit status being reassessed

Some good news

The good news is that, although the DWP consulted on two further WCA activities – “coping with social engagement” and “continence” – it has decided that no changes will be made to these.

A new feature called the “chance to work guarantee” will be introduced for disabled people claiming UC and ESA who have LCWRA status.

The DWP says that this group will be able to try out work without the threat of their benefit status being reassessed.

In addition, they will have no further WCAs except in limited circumstances, including:

  • When a claimant reports a change of circumstances in their health condition
  • If a claimant has been declared as having LCWRA under the new risk provisions
  • Claims where fraud is suspected.

Most of these changes are unlikely to make life easier for people who rely on benefits.

‘Sometimes in life, people need encouragement and support to have their voices heard’

Catherine Carter works for Thera North, speaking up for people with disabilities, checking service quality and sitting on the board. She talks to Dominique Burley

Catherine Carter

Catherine Carter has now been working at Thera North for a year, where she is a quality service director.

She talks about helping people with disabilities and what qualified her for the job, and offers advice on securing work.

What does your job involve?

My job is to represent the people we support who have a learning disability in Thera North at the charity’s board level.

Thera North supports people with a learning disability in Cumbria, County Durham, Darlington, Blackburn with Darwen, Bolton and Lancashire.

I check if people are getting good support and getting their voice heard, and making sure they are happy with the services that Thera North supplies.

I do visits, go to events we do for people we support, take part in our business planning with them and go to management and board meetings.

What do you particularly enjoy about the work?

That I am meeting people and listening to their stories and trying to help them live a life that they want.

I like being a self-advocate and helping other people who have a disability like me. Sometimes in life, people need encouragement and support to have their voices heard and that is what my job is all about.

I am very confident person who will stand up and let people with a disability have a voice.

How was the recruitment and interview process?

I had to do a presentation about myself and being a self-advocate, talk about my achievements in life and if I had done any quality checking of services in the past. I answered questions from a panel of people.

Because of my background and my expertise in self-advocacy – I worked for an equal rights charity in Leeds, an organisation promoting and listening to the voices of people with learning disabilities or autism – I qualified for the job.

What adjustments do you have in your work?

Thera has been very supportive in adjusting to my health and hospital appointments, which I was worried about in the interview as I am undergoing cancer treatment. But I am an honest person and I do not hide information.

I have an executive assistant who helps me with my role. She has been very helpful and gets me the information I need to know. She helped me settle into the role and also helps plan my diary, like where I need to be on certain days.

Do volunteering work if you had not had a job before; it will make you a better person to represent people and speak on their behalf

What have you done in your job that you are proud of?

I am proud of every part of my job. Thera Trust hires people with lived experience to be quality service directors and they can work their way up to higher positions in the trust if they have the right experience. No other firm I know offers this type of opportunity for people with lived experience.

What advice do you have for someone who wants to do a job like yours?

Build up your confidence, do some training, don’t be scared to take opportunities and work with local advocacy groups.

Do volunteering work if you had not had a job before; it will make you a better person to represent people with lived experience and to speak on their behalf.

What’s your biggest achievement to date?

I was so proud when I won the Mencap Activist of the Year award in 2018.

I did a speech in the Houses of Parliament around health for people with learning disabilities in front of health minister Caroline Dinenage MP.

Dominique Burley is senior development worker at Forum Central’s Learning Disability Network

Listen differently

Being open to listening in alternative ways allows you to understand how people with profound disabilities express themselves and what they are telling you, says Joanna Grace

Woman with a blue egg sculpture outside

Those who say that people with profound intellectual and multiple disabilities cannot indicate a yes or a no tend to be looking only for the forms of communication they themselves recognise.

If you are open to listening in different ways, then people can be heard in the ways they express themselves.

I look for assent continuously in my collaborations for my PhD in identity and belonging with people with profound intellectual and multiple disabilities.

The most interesting word in that research title for me to explore is “with”. I aim to do research with people – not “on”, “about” or even “for” them – but with them. Collaboration cannot be genuine if someone is forced to take part.

If I was seeking to do research with you, I would ask if you wanted to take part and you could choose to say yes or no. I would explain what the work entailed, so that when you said yes or no, you knew what you were talking about. I’d let you know that if you wanted to change your mind, you could.

These are the nuts and bolts of informed consent, which relies on your understanding of, for example, language as well as of the research itself. So I ask for informed consent from those who care for them, and I look for assent from them.

Think of assent as consent at one time, so you need to look for it in every moment. I cannot explain to those I collaborate with what we will do; I have to provide it as an experience – one they can opt into or out of.

My work involves sharing the experience of novel objects, so I bring these into a place where people can access them if they want to.

Becky, a teenager at a special school in the south west, is one of the people with whom I collaborated throughout last year and features in the photographs.

I stood outside with a giant blue egg for close to two hours. Becky knew the egg was there, and came over to touch it just once in that time, for maybe 10 seconds, then walked away again. Touching the egg was Becky’s choice.

 

I wanted to check Becky was happy to spend time with me, and wasn’t just there for the objects. I moved away from them and sat on a chair. I did not call or beckon her but, after a short time, she left the objects and came over, exploring my hair and eventually climbing onto my lap and hooking her chin over my shoulder in a kind of hug.

I understood from this that she was happy to spend time with me and interested in our work together.

By recognising and respecting Becky’s agency in this way, I ensured our collaboration was genuine. We worked together over a year and I learned a lot about identity and belonging in this time.

Joanna Grace is a doctoral researcher at Southampton University and founder of The Sensory Projects

Her research is funded by the Economic and Social Research Council through the South Coast Doctoral Training Partnership and supervised by Professor Melanie Nind and Dr Jo Hope

Photos: Joanna Grace