Community Living

Work is the priority

6 July 20236 July 2023 — Summer 2023

The health and disability white paper, issued out alongside the spring budget, brings in major changes to benefits and support for disabled people to find employment, says Charlie Callanan

Chancellor Jeremy Hunt preparing for the spring budget: changes are intended to support people to work. Photo: Zara Farrar, HM Treasury

Chancellor of the exchequer Jeremy Hunt presented his spring budget in March – at the same time, his government issued the health and disability white paper.

The white paper provides further details of plans for employment support for disabled people in the budget. It also includes proposals for changes to the benefit system that, if and when made, will affect many people with a learning disability who claim means-tested benefits.

The government said the measures were designed to “support and encourage people into work”.

These include the following.

Abolition of the work capability assessment. This is used to determine whether a claimant has limited capability for work or work-related activity, and if they can get an extra payment in contribution-based employment and support allowance or universal credit (UC). Under the proposals, it will be replaced by the assessment used for personal independence payment (PIP). A person receiving PIP would be entitled to the extra payment
A new “health element” in UC. This will replace the limited capability for work-related activity element in UC
Support from work coaches will be extended to more long-term sick and disabled claimants. They will give advice, coaching and support to help them secure a job
People claiming UC will be required to agree and meet intensive work-related conditions, with an increase in the amount they need to earn before they have to meet only light-touch requirements as a condition of getting the benefit
UC claimants who are the main carer of a child will have increased requirements to look for work and/or increase their working hours but with additional work coach support
The sanctions regime has been toughened up for cases where claimants fail to meet work conditions they need to fulfil to maintain a claim or choose not to accept “reasonable” job offers. Claimants with a disability may have voluntary and mandatory work-related requirements imposed by their work coach and will be subject to sanctions if they do not comply
A new voluntary employment scheme for disabled people – universal support – will try to match people in England and Wales with job vacancies and fund training and workplace support. The plan is to help up to 50,000 people a year with up to £4,000 spent per person.

A couple of measures in the budget affect families. Working households receiving UC can now claim back up to 85% of their childcare costs at higher rates, up to a maximum of £951 a month for one child or £1,630 for two or more children. Thirty hours of free childcare is to be provided for children aged over nine months; this is being phased in between April 2024 and September 2025.

The government said before the budget that millions of the lowest-income households in the UK would continue to get financial help with the cost of living. These closely mirror the cost of living payments operational since 2022.

They are:

Up to three cost of living payments of £300 to people in work receiving means-tested income benefits, including UC, tax credit or pension credit. These are being paid in three instalments between May this year and spring 2024
A disability cost of living payment of £150 for a person who gets any of the main disability benefits on a certain date. These include attendance allowance, PIP and disability living allowance for adults or children; in Scotland, these include adult disability or child disability payments
Pensioner cost of living payment: people of pensionable age who are entitled to a winter fuel payment for winter 2023-24 will get an extra £150 or £300.

Many of the major changes proposed in the white paper will take some time to become reality, and we will report on the changes as and when they happen.

Pandemic effects persist today

Saba Salman

6 July 20236 July 2023 — Summer 2023

Many people with profound and multiple disabilities are still experiencing harm and disadvantage because of Covid. Saba Salman reports on evidence unearthed in a collaborative study

Orla McKenna with her sister Brenda Aaroy: McKenna became less mobile during Covid and she can no longer walk unaided. Photo: Brenda Aaroy

“While normal life returned for most when lockdown was lifted, for many with learning disabilities, a lot of services have been very slow to return. Like many families, we wonder: will they ever come back?”

These words from Brenda Aaroy, based on her experience with her sister Orla McKenna, reflect how Covid still affects lives of those needing the most support.

This is although it is two years since lockdown was lifted.

Aaroy, whose sister has limited communication and lives in a Belfast care home, spoke at a recent online event organised by Manchester Metropolitan University (MMU) to mark the end of the Coronavirus and People with Learning Disabilities Study.

New plus old problems

The two-year, UK-wide study involved almost 1,000 people with learning disabilities plus 500 family carers and paid support staff. It has reported findings four times since winter 2020.

The study underlines how those with more complex needs face permanent disadvantage as a result of the pandemic. There are also fresh problems, including the cost of living crisis and a shortage of support workers.

Aaroy was involved in the study as part of carers’ network Families Involved Northern Ireland. Her sister’s mobility deteriorated during Covid; she can no longer walk unaided and was recently hospitalised for viral pneumonia. The day services that had ground to a halt have just been reinstated, but for only four days a week.

She also speaks warmly of her sister’s passions: “Orla sings like a bird and she may not have words but, with the songs she knows, she knows the tunes perfectly. This is what I missed most when we were apart.”

According to the study, 14% of people with learning disabilities and 19% of those supporting them do not have enough money. Visitor restrictions remain for a minority of those in residential care although few are still shielding.

The health of those with profound and multiple learning disabilities was reported to be worse than that of other people; 40% of the former said they were in good health compared to 59% of the latter.

The research is a landmark project. Not only is it the largest research on Covid and beyond to directly involve people with learning disabilities but also it is deeply collaborative.

Research was conducted by UK universities including Bristol, Cardiff, Kent, Glasgow, University College London, Ulster University and the University of South Wales. Partners working together to gather research and shape interview questions included Learning Disability England, All Wales People First, Promoting a More Inclusive Society in Scotland and Families Involved Northern Ireland.

This approach brings another benefit, as MMU research fellow Sue Caton says: “It’s been a catalyst for creating a UK-wide community of people with shared ambitions and has been based on trust. Hopefully those connections and relationships will continue long after the end of the project.”

For Aaroy, the study proves that social care staff should be better valued and people’s rights upheld.

She adds: “The researchers have provided the evidence and it is important that any new policy reflects this. We need to see that people with learning disabilities are afforded the same rights as everyone else, are respected as every other human being and have the chance to be included in our communities, close to family and friends.”

The researchers have provided the evidence and it is important that new policy reflects this

The study says, in effect, that marginalised groups need to be involved in responses to any public health crisis and recovery from it.

Chris Hatton, MMU professor and regular contributor to Community Living, led the research alongside Warwick University professor Richard Hastings. As Hatton says: “Nobody can say they didn’t know.”

A safe space of stories

Sheila Hollins

6 July 20236 July 2023

Reading and exploring picture stories together can help children, including those with communication problems, understand their feelings and support each other, says Sheila Hollins

Teacher in front of group of children at school

Teacher Marie Grant supports children to discuss feelings through the characters in Ginger is a Hero. Photo: Seán Kelly

It’s hard to learn when you’re hurting inside. That’s why Feelings Groups were created by primary school teacher Marie Grant, incorporating books from my charity Beyond Words.

Feelings Groups help children understand and talk about their feelings, using Beyond Words’ picture stories. They are making a big difference in mainstream and special needs schools, encouraging empathy and reducing loneliness.

Given the crisis in children’s mental health, it’s vital we give all children a safe, supportive environment so they can express how they feel, especially those who may struggle to communicate.

Feelings Groups began as a bereavement group in spring 2018 in a South Yorkshire school where year six teacher Marie Grant realised there was a higher than usual number of bereaved children.

These groups developed into Feelings Groups for pupils enduring any kind of trauma – bereavement, abuse, parental imprisonment or a family break-up – but who did not have the language or a safe space to talk about it. Using pictures from the Books Beyond Words series, which have no text, she brought children together to gain peer support.

This allowed them to discuss the characters and what they might be feeling in their own words, using their creativity and experience to describe what they were seeing.

Over time, the children began to relate the stories to their own lives. They developed the emotional vocabulary to express how they felt and show empathy to their peers. Not only did the children learn how to express themselves but also their school attendance and scholastic achievements improved.

A big family

One year six pupil said: “Feelings Group is like a big family that’s always there for you. They helped me get through it all. It helps with our feelings and mental wellbeing. It is a safe place.”

After Feelings Groups were set up in Grant’s school, SATs went from 17% of children achieving expected standards to 84%.

Inspired by the Feelings Group model, Gloucestershire special schools have started using our pictures to support children and young people with learning disabilities to explore situations and emotions they find frightening or difficult to understand.

Early outcomes have been very positive, with pupils increasingly able to recognise and describe their emotions and experiences.

Pupils with learning disabilities often have to cope with trauma as well as communication issues, and trauma limits abilities to engage with others. Through Feelings Groups, learners are empowered to tell their own story and develop a narrative using their own language.

In Gloucestershire, sessions usually run for around 40 minutes and are adaptable to school and communication styles, with time to process and explore language.

They helped me get through it all. It helps with our feelings and mental wellbeing

Books used include Making Friends, Feeling Cross and Sorting It Out, Ginger is a Hero, Mugged, Finding a Safe Place From Abuse and Loving Each Other Safely.

Once set up, the groups are cost-effective to maintain. The only investment schools need to make is in staff time for training.

A licence for the BWStoryApp, which contains all our stories and many shorter scenarios, is on sale. Membership of Beyond Words, to provide e-learning and allow discussion between schools running Feelings Groups, is being planned.

Our BBC Radio 4 appeal this year raised just over £20,000, enabling us to roll out training. We welcome enquiries from schools about this.

We know from our experiences of co-creating books and running book clubs for people with learning disabilities how transformative the power of reading images can be. n

Baroness Sheila Hollins is the founder and chair of Beyond Words

Learning for adult life

Suzanne Gale

6 July 20236 July 2023 — Summer 2023

If young people are to be prepared to be adults, the special school inspection scheme needs to change and education plans should reflect individual preferences, says Suzanne Gale

At the end of the day: it can be concluded from recent government publications that the special education system is failing. Photo: Dobrislava, CC BY-SA 4.0, via Wikimedia Commons

We need a new focus and approach to reviews of special education providers if we are to raise young people’s aspirations and prepare them for adulthood.

According to the government’s special educational needs and disabilities (SEND) review last year, 15.8% of all pupils – 1.4 million – have special educational needs.

And 3.7% of all pupils in the state-funded English education system had an education, health and care plan (EHCP), an increase from 2.8% in 2016.

The government’s SEND improvement plan, published earlier this year, includes a promise of new specialist school places, along with a focus on new national standards, early intervention and standardised, digital EHCPs.

But the conclusion we can draw from these official publications? As a system, we’re failing.

Progress, but slow

It is true that many local authorities have developed a much better local offer following the publication of the SEND regulations almost a decade ago.

But there is still a national shortage of specialist staff and provision for children and young people with “behaviours that challenge” and those with very specialist support needs.

The main change back then was that EHCPs replaced statements of special educational needs. There was also a focus on longer-term planning and an expectation of clear planned outcomes.

Around that time, I was part of a project that reviewed a number of college placements.

We found that many did not live up to their hype, with poorly trained staff, limited specialist training and often operating within a risk-averse model that offered merely a baby-sitting service rather than prepare young people for adulthood.

For many of these young people, their adult placement – often with the same provider that had supported them as a child – had been determined before they started college – or even school. This was because of low expectations for progression and the lack of any allowance for their preferences and aspirations to develop.

Inspectors lack the skills and resources to fully evaluate the outcomes of individuals

The struggling labour market was also reflected, with many classroom assistant posts being filled by unpaid students on placement, overseas volunteers or care workers with no experience in education.

I remember one visit where I met a young man, who really loved rock music, played the electric guitar and told me he wanted to be in a band. He was made to move and count fish from one pond into another. The intended outcome of this “lesson” was improved numeracy and motor skills. The learner also said he hated fish.

While the college has been much improved since, the episode still reflects all that was wrong.

So what needs to change?

Of course, we need new funding to ensure any new provision is appropriately staffed, with a clear remit to ensure employees are as specialist as the institution claims. Staff must have opportunities for progression and be supported to avoid the continual turnover resulting from frustration and burnout.

And EHCPs must be progressive, reacting to changes in a child’s life, individual developing preferences and supporting real preparation to adulthood.

A new approach to inspections is key. Where there is 24-hour provision for young people, Ofsted and the Care Quality Commission, which inspect educational and care settings respectively, must take each other into account. This means the schools regulator must be mindful of the care offering, and care inspectors must be mindful of the educational provision.

The sector relies on these inspectors but they lack the skills or resources to fully evaluate the outcomes of individuals.

Schools and colleges must support a child or young person’s learning – holistically – in whatever way this looks like for them

More stories about: Children Special education

‘They listen to me more than to their own lecturers sometimes’

Seán Kelly

6 July 20236 July 2023 — Summer 2023

Paul Taylor, the UK’s first university lecturer with learning disabilities, teaches healthcare students about how they can understand and treat people like him. Seán Kelly learns about his work

Paul Taylor: “It is important for student nurses and doctors to learn to understand people with learning disabilities”. Photo: Bangor University

A few years ago, Paul Taylor, who has learning disabilities, was in hospital with a nasty earache. He asked for something for the pain but was refused. He and his mother had to plead for a long time before he was finally given some “numbing cream”.

It is an experience that he refers to when he speaks to learning disability student nurses and trainee doctors in his role as honorary lecturer at Bangor University, Wales. The university believes that Taylor, who has held the role for six months, is the first person with learning disabilities to join an academic team at a UK university.

Taylor, 35, believes that higher education is becoming more inclusive, as reflected in the University of Cambridge’s recent appointment of Jason Arday as the youngest black person ever appointed as a professor. Taylor says he is very pleased that Arday, who was diagnosed with autism and global developmental delay when younger, has done so well.

Returning to Taylor’s hospital experience, why does he think he was refused pain relief? He is not sure. “Maybe it was a mistake? They had to go and ask if I could have it.” It took a long time, he adds.

Taylor wanted to do something to prevent this happening to other people. He knew that Bangor University offered medicine and healthcare courses and wrote to offer his help.

“I wanted to help them make their courses better… When they treat people with learning disabilities in hospitals or the community, they will understand them better.”

So, in 2019, Taylor was invited to become a guest lecturer at the school of medical and health sciences at Bangor University.

Paul Taylor with brother Ryan at London’s Barbican: Ryan calls him “Mr Famous”. Photo: Seán Kelly/www.seankellyphotos.com

The job is part time and Taylor works as needed, once or more a month. He takes part in seminars and often speaks to groups of 70 or more students as well as answering questions and chatting with them.

Do any of them say “I don’t want to hear this?” He laughs: “No, no, very good they are. They listen to me more than to their own lecturer sometimes.” Taylor says one student nurse recently told him “it benefits me and my cohort to hear about your experiences”.

Prestige

It is a voluntary position; Taylor receives expenses but is not paid. He says the university offered to pay him but, since it is a part-time job, it would not have been much.

“Honorary lectureship is prestige. I am happy. I enjoy working closely with the university. I get a lot of excellent feedback and meet new people. It’s a good job, an enjoyable job.”

Taylor uses PowerPoint in his talks. He tells me a mentor helped him develop presenting skills. This was via the 2013 Special Olympics in Bath, which he was involved in as a striker with the Welsh national football team. The mentor, who worked for investment bank Merrill Lynch, taught him how to use the program. University staff help by changing the slides as he speaks.

I ask about feedback. He smiles. “We were going to change a bit but the lecturer I work with now said nothing needs to be changed – it’s brilliant. I speak really good.”

Does he ever find it hard?

“I sometimes find it difficult to present because I get muddled up and I have to repeat myself. But the students are very patient and they still clap at the end.”

During Covid, work went online and Taylor is glad to be back meeting people face to face.

He has been open about becoming depressed during lockdown, especially as he needed to continue shielding afterwards:

“I was sheltering for two years. I couldn’t go out or anything. It made me severely ill. I couldn’t mix with anyone.”

For the doctors who visited him then, he has warm words: “They understood well. They work with people with learning disabilities.”

Taylor is hoping to speak at a learning disability conference next year. He was booked to attend one soon after we met: “I am going to watch first. To see them do it. Then, next time, I will go on stage and talk.”

Interviewing prospective students at Bangor is also part of his role: “We ask questions about how they will cope under pressure when they become nurses.”

The job with Bangor does not take up all his time and Taylor tells me he likes to socialise with friends and listen to music, especially rock, pop and metal. He belongs to Gig Buddies (a project that matches adults with learning disabilities with volunteers with similar interests), but has not been to any gigs yet; instead, he and the buddy went out for an Italian meal in Bangor.

Public life, public speaking

He attends a weekly social group, organised by Menter Fachwen, and volunteers at a British Heart Foundation shop one day a week, sorting donations. He also has a regular role with the Royal Voluntary Service cafe in the local hospital.

Taylor got his first taste of public speaking when telling people about his sporting experiences. He made a bit of a name for himself as striker in the Special Olympics – the Welsh team came fifth.

Perhaps this meant he was more ready for the limelight when, following his Bangor appointment, he appeared on the BBC Wales website and on the Wales Today programme. Taylor’s older brother Ryan calls him “Mr Famous”.

Ryan, who comes along to the interview, asks whether the work with Bangor University has changed him. Taylor says he feels he has been treated as an adult, become more mature and made friends there. Early on, some students mistook him for another learner.

Now he feels more confident in the role. “I am the UK’s first university honorary lecturer with learning disabilities, before anyone else with learning disabilities,” he says.

Ryan asks “Did you get a bigger ego, do you think?” Taylor grins but gives a speedy and definitive “No!”

Taylor says roles like his should be more common: “Other universities across the UK and Ireland should do the same thing. It doesn’t cost them a lot of money so they could copy it.”

He explains why this work matters: “It is important for student nurses and doctors to learn to understand people with learning disabilities better and think about how they treat people like me in the future. Because, if they don’t treat them well, they won’t have a good experience in the hospital.”

Maternity my way

Alexis Quinn

6 July 20234 January 2024 — Summer 2023

After finding there was no advice out there for autistic parents, Alexis Quinn decided to fill the gap to put mothers in control around childbirth

Alexis Quinn with Farr: “The key to a positive birth process is knowing you have choices”. Photo: Alexis Quinn

Just over a decade ago, I gave birth to my daughter Abi.

In many ways it was unremarkable. Compared to other parents’ birth stories, mine was not particularly horrid, gruesome or eventful. My daughter was healthy. I went on my way with my bundle of joy.

I was grateful that both Abi and I were OK. But I didn’t feel right during my pregnancy, birthing or postnatal period. It was like I was treading water to survive. Attending appointments and managing the overwhelming sensory experiences were unbearable. What was up? I didn’t know.

By the time I had decided it was time to have another baby seven years later, I had learned I was autistic. I looked up “autism and pregnancy”, “autistic mothers” and combinations of “autism”, “mothers”, “fathers” and “parents”.

I found reams about how to avoid having an autistic child. I saw a whole load of stuff about how difficult it is to look after autistic kids. There was nothing – and I mean nothing – on managing pregnancy, childbirth and the post-natal period for autistic mothers. Where were the relatable, powerful autistic female role models in film, TV or any form of popular culture? Where were all the autistic parents?

Having my second baby (my son Farr, now three), was different.

In between my two children’s births, I experienced a multitude of human rights abuses during involuntary confinement on a section in the English mental health system, which I have detailed in my memoir, Unbroken. These experiences got me thinking. I realised that my pregnancy and birthing experience was the result of being medicalised and objectified.

During my second pregnancy, I decided to take control.

I was active in my care, not a passive recipient. I controlled when I had appointments and where they happened. I made sure that I understood everything. I even insisted that I receive a follow-up summary email to ensure I had understood everything correctly. This reasonable adjustment made all the difference.

Choice and control

I also made a routine, organised my days and planned for the baby. I enjoyed my pregnancy because I was informed and free to make my own choices.

The key to a positive birth process is knowing you have choices. Having a birth plan will ensure your health professionals are already aware of your views and choices.

A birth plan can be reasonably adjusted in terms of understanding and using language, for example, by saying: “Please give me more time to process what you are saying to me.” Or, in terms of understanding and getting on with non-autistics, for example: “Please avoid using facial expressions or gestures as I may not understand what you are trying to communicate.” Or mentioning sensory processing differences such as: “I find bright fluorescent lighting intolerable. Please switch off the overhead lights.” Remember, everyone is different, so this list is not exhaustive.

Here are five things I insisted on:

To be fully informed about the facts relating to my care
To retain choice and control and decide for myself what is best
To be listened to and treated with dignity and respect
To be empowered to be independent
To be appropriately supported so I could have positive memories of my pregnancy and birth.

I created a downloadable maternity passport in standard and easy-read versions (see the resources section) because it’s helpful to give health professionals as much information about yourself as possible (see box, right).

Wanting an autism-friendly pregnancy and birthing experience is not selfish. It is essential.

Alexis Quinn is the author of Autistic and Expecting: Practical Support for Autistic Parents-to-be, published by Pavilion Publishing and Media

A passport to smooth hospital experiences

Many appointments involve different health professionals. To avoid having to repeat yourself, you can use a maternity passport. This is a document that holds:

Information about you
Feelings and hopes about your pregnancy
Reasonable adjustments you need (eg being able to wait outside the hospital for an appointment)
Things that might cause you distress (eg loud noises)
How to help if you experience sensory overload
Details of your advocate or spokesperson
Preferences for any ultrasound scans
Birth plan.

More stories about: Autism Children Maternity

Meader’s view: Summer 2023

Robin Meader

6 July 20236 July 2023

The latest from Community Living cartoonist Robin Meader

My life story in pictures

Robin Meader

6 July 20236 July 2023

Community Living’s cartoonist Robin Meader illustrates his life and times

I was born in 1977 in Southampton. My mum and dad had problems so, I when I was six years old, I got moved from Southampton to Wedmore in Somerset to live with my grandparents. It had loads of woodland and wildlife.

When I was a child, I used to watch a lot of wildlife programmes on the BBC. I saw these birds in a cartoon called David the Gnome. I got hooked on drawing cartoon pictures of animals.

My first job was in a bakery and the people were really aggressive. Like “boy, go and do that”. I didn’t get paid, all I got was bread and cakes.

My mates at college were into rock on one side and the other side were into r’n’b and techno. You felt like “which side do I join?” Then everybody started to like me because I was into both pop music and techno. People started becoming really friendly – I was building a friendly environment.

I was at college doing a Workskills course when I managed to catch a bus on my own all the way from college to home. It was like a bus ride to independence. It reminded me of the story of the sword in the stone. I told my gran when I got home how I’d caught a bus back on my own. My gran could not believe it.

I’ve done many jobs. Now I live with my aunty and uncle – I’m their carer. I do their cooking and help them to wash their clothes. They both have learning disabilities. And I get help and support from them as well. I do like sticking up for a lot of people who do need their disability rights heard.

When Nicola Grove, founder of community arts charity Open Storytellers, came to my day centre in Somerset 21 years ago, she said: “How many of you want to become storytellers?” Forget day services – we will become storytellers!

I set up my own company, Robin Meader Artist, in 2010. I’ve got a circle of support that helps me to get the jobs. If you want to set up your own business, you should just feel like “yeah, I can do that”. That’s what disabled people should be doing – looking for work and skills and power.

Robin Meader - self portrait — Robin Meader – self portrait

Children with profound disabilities make decisions, and group compassion therapy aids mental health

Juliet Diener

6 July 20236 July 2023 — Summer 2023

Adults need to know how to help children with profound and multiple disabilities to make decisions about their future, and group therapy with compassion has promising results, says Juliet Diener

Children need opportunities to plan their lives, regardless of disability, and group therapy with a compassionate approach aims to reduce anxiety.

Children’s decisions

Farmer KE, Stringer P. Understanding the views of children with profound and multiple learning difficulties for person‐centred planning. Journal of Learning Disabilities. 17 March 2023.

Every child, regardless of intellectual challenge, should actively participate in decisions about their future, according to the Children and Families Act 2014.

The complexity lies in adults facilitating opportunities for children with profound and multiple learning disabilities (PMLD) so they are not to be disadvantaged in sharing opinions.

Person-centred planning is the focus of the study because it is recommended by both the Special Educational Needs and Disabilities Code of Practice and the Department of Health and Social Care.

The authors have worked as educational psychologists in schools for students with complex needs. They reflect on the debate of what it is to gather a view as opposed to merely a response from a child with PMLD.

However, the focus of the qualitative multi-case study is primarily to ascertain the role of the adult in supporting a child or young person’s participation in decision-making. The study explores the experience of three young people using grounded theory (a qualitative research method grounded in data) with an emphasis on researcher reflexivity.

Each case study included the mother of the child and two professionals involved with their education. None of the children used formal communication systems.

Findings indicate how the social and relational context of the adult or communication partner enabled informed observations that helped them understand the child’s needs.

The perspectives of professionals from a variety of fields offer further insights into a child being part of the decision-making process.

The study’s findings are transferable to any age and stage of learning need. They also offer insights into securing everyone’s participation in their plans.

Compassion to selves and others

Hewitt O, Codd J, Maguire K, Balendra M, Tariq S. A mixed methods evaluation of a compassion‐focused therapy group intervention for people with an intellectual disability. Journal of Learning Disabilities. 17 April 2023.

This cites research showing that people with intellectual disability have a greater risk of psychological difficulties and mental health conditions because of various interpersonal, social, and environmental factors.

Clearly stating the value of psychological support for adults with learning disabilities, the researchers focus on applying a compassion-focused therapy.

This is a type of psychotherapy that encourages people to be compassionate to themselves and others, and aims to reduce anxiety and introduce more self-compassion into day-today life. It has had some success with learning-disabled people.

In this study, a group of seven people attended eight weekly sessions. These had a similar structure to aid accessibility, with exercises and discussion.

The group was facilitated by three trainee clinical psychologists, who received regular clinical supervision. The results, while on a small scale, indicated change in each participant’s wellbeing and, for most, their self-compassion too.

There is a considerable lack of knowledge and training in meeting mental health needs

Interviews with participants offered insights into their experiences and they reflected on their ability to practise compassion. They recognised the value of the experiential exercises, which lessened the need for cognitive challenge or verbal engagement.

While the authors believe further study on the efficacy of this approach is needed, indicators reveal its value. Input from carers was lacking and studies on this could offer further insights into the impact of the group on participants.

Mary O’Hara: contrast lays bare the values of two governments

Mary O'Hara

6 July 20236 July 2023 — Summer 2023

While disabled people in the UK are being hit by cuts and austerity, a presidential commitment, backed by hard cash, has been made to their US counterparts

US president Joe Biden has shown political will to do something concrete to support caring. Photo: Wikimedia Commons

In an environment where headlines come thick and fast and disappear just as quickly, it’s nonetheless impossible to miss two words because they often appear hand in hand: cuts and care.

Every time we dare to hope this lethal linguistic duo will vanish, up they pop again. As always, among those most likely to bear the brunt are people who’ve already seen services slashed to the bone, including learning disabled adults and children.

In March, headlines flashed that the UK government was poised to wipe £250 million from proposed investment in the social care workforce at a time of huge staff shortages and dire wages. A further £300 million earmarked for more supported housing was also at risk of being cut.

Even when the government could have targeted funding tactically to where it is desperately needed – for example in the chancellor’s spring budget – opportunities were missed.

In March, Carers UK, which had called for “dedicated work allowance” for unpaid carers, highlighted that, once again, the government had failed to provide additional, targeted support for the country’s 1.1 million economically inactive carers at a time when the cost of living crisis is biting hard on top of years of cuts.

Meanwhile, in Northern Ireland, the panic button was pushed when it emerged that “high impact spending cuts” set to be introduced due to funding gaps in the devolved government’s budget, were a threat to care packages, including for community-based services and education budgets that children with learning disabilities rely on for school places.

In April, the Westminster government agreed a temporary reprieve but the swingeing cuts (proposed to tackle a £297m budget overspend) have, as Dr Ciara Fitzpatrick, lecturer in social security and poverty at the University of Ulster, told me, merely “kicked the problem down the road”.

Austerity versus care economy

Fitzpatrick notes too that, while this latest wave of “concentrated austerity” is slashing support for people using services and carers, it is being framed as “necessary” to plug funding shortfalls.

These are just a few UK stories I’ve been digesting in recent weeks from across the pond. They were all the more jarring because they arrived in the same news cycle in which the Biden administration announced a huge push via executive order – a presidential tool often used to accelerate policy priorities – to support the “care economy”. It proposes to invest $15 billion over 10 years.

This action, which incorporates over 50 directives to leverage federal government resources to increase access to home and community-based support, childcare and other vital services, was welcomed by the American Association of People with Disabilities.

No, it’s not perfect, association president and chief executive Maria Town told me, and, yes, there are still huge obstacles within congress for approving budgets for support, but it is “highly significant”.

The executive order is a reinforcement of a recognition that caring matters. It also shows there is political will, at least from the White House, to do something concrete.

Spending celebrated

Also significant is the language. In notable contrast to the UK, with its steady “cuts are necessary” mantra, the huge investment proposed in the US is couched in language of positivity, backed up by specific action – as well as hard cash.

It’s not only a tonic to see progressive and necessary action being celebrated in the US. It is in stark contrast to the seemingly eternal bleakness of the social and community care policy environment in Britain.

How different things could be with the right priorities – and political will. And how much brighter the future could be for learning-disabled children and adults and their carers if those priorities were championed and implemented.

We all need a holiday

Stephen Kingdom

6 July 202315 July 2023 — Summer 2023

Many children miss out on chances to play with others or enjoy a trip away in summer, says Stephen Kingdom

Alex Cripps, aged six, cannot take part in holiday play schemes without one-to-one support. Photo: Louise Cripps

The summer holidays can be great fun – a time to relax and, with luck, enjoy the sunshine. But, for some families, it can be a difficult time.

In a fairer society, everyone would have the same access to leisure and holiday experiences. The United Nations’ Declaration on the Rights of People with Disabilities includes the right to a cultural life and leisure.

The Disabled Children’s Partnership (DCP), a coalition of 110 organisations supported by a network of parent carers and allies, campaigns for a fairer support system to improve health and social care for disabled children, young people and their families.

One difficulty around holidays is the reduction in support once schools break up. There is little provision with the one-to-one staff ratios or specialist workers needed for many children with learning disabilities.

Demand for support does not meet supply. Our 2022 research, Failed and Forgotten, based on 2,000 families, showed nearly three out of four disabled children saw their progress reverse in the pandemic as services were reduced.

And 2016 research from Mencap, a DCP member, suggests four out of five parents who have a child with a learning disability struggle to access support during the summer holidays.

The government’s new short breaks innovation fund provides councils with up to £1 million a year. Thirteen local authorities have qualified so far – this cash needs to go out to more.

Public attitudes are another barrier. Mencap’s survey found 58% of parents with a child with learning disabilities worried about this when going on holiday.

DCP member the National Autistic Society says barriers result from a lack of awareness. Its guide for tourism venues explains that some environments – noisy, busy and filled with overwhelming sensory information – can cause difficulties.

Limited holiday childcare places is another issue, coupled with the rising cost of childcare – all while the cost of living crisis bites. Many families are in a catch-22 situation; they need to work to pay for support during the holiday, but are unable to work without childcare.

Social interaction lost

Former teacher Louise Cripps is the mother of Alex, six, who is autistic. Cripps, from south-west London, says: “Alex attended a mainstream holiday club last summer with a one-to-one worker paid for by us. This year, they have told us they can’t safely meet his needs.

“We have been given carer hours but Alex can’t go out in the community without me because he runs away. So, when he’s not at school, he’s stuck at home, missing out on vital social interaction.

“He’s also missing out on the crucial therapeutic nature of play and the chance to burn off energy. Change of routine impacts him; it’s unsettling and overwhelming.

“Alex’s little brother is two. Next year, the world will open up for him – he will be able to try things like junior football – but, for Alex, the world is closing down.”

DCP member Contact, a charity for families with disabled children, offers a free guide to holidays, play and leisure for families.

As Contact says, all children need the chance to play. Many of those with disabilities say leisure and play are the most important missing elements in their lives.

Stephen Kingdom is campaign manager at Disabled Children’s Partnership

Imbecile or just bizarre?

Susanna Shapland

6 July 20236 July 2023 — Summer 2023

Did a jury agree that reckless behaviour, including rapidly marrying a courtesan and impersonating police, showed a wealthy man was of unsound mind or an English eccentric? Susanna Shapland reports

Title page of The Great Lunacy Case of Mr W. F. Windham. Credit: Wikimedia Commons

William Frederick Windham was born into a wealthy Norfolk landowning family in 1840. After the death of his father in 1854, his guardianship passed to his nervous and distracted mother and his formidable war-hero uncle, General Charles Ash Windham.

Just before he came of age, William Windham fell in love with Agnes Willoughby, one of the most celebrated and (thanks to her many admirers) wealthy courtesans of her day. She was also by all accounts a shrewd businesswoman.

Windham spent what he could afford on wooing her and, after he came of age in 1861, settled a vast sum on her when they married three weeks later. During their time together, he also bought her jewellery costing the equivalent of £600,000 in today’s money.

Family bid for control

Horrified by what he saw as his nephew’s reckless behaviour and even more reckless spending, General Windham launched a commission for lunacy.

His intention was to prove that William Windham was an “idiot” or “imbecile” of some description, and therefore incapable of managing his own affairs. The marriage would then be annulled and the family estate and all assets brought back under the family’s control.

He loved to wear uniforms and impersonate officials. While dressed as a railway guard, he almost sent one train into the path of another

The Windham case was heard before a jury and involved 140 witnesses. It ran for 34 days over 1861-62, racking up tens of thousands of pounds in legal fees.

Evidence focused not only on William Windham’s profligate spending but also on his “dirty” habits, such as vomiting at the table, and his flamboyant, “inappropriate” behaviour.

The latter included consorting with the lower classes, making unsuitable noises and displays of emotion at formal events such as his father’s funeral as well as the buffoonery that had earned him the suggestive nickname of “Mad Windham” while at Eton.

Windham was undoubtedly eccentric. In particular, he loved to wear uniforms and impersonate officials. Dressed as a police officer, he “arrested” women on Haymarket and accused them of soliciting, and had torn round the Norfolk lanes in a hijacked mail cart dressed in a post-office uniform.

He did most damage dressed as a railway guard. On one occasion, he almost sent one train into the path of another through injudicious use of his guard’s whistle, and was also known to bribe staff to allow him to drive the trains.

At least one of his terrified passengers wrote to The Times expressing the sincere hope
that the commission of lunacy would at least put an end to this latter behaviour.

But it was not to be. Unimpressed by the sight of disunited and bickering medical men who simply could not agree on whether Windham was an imbecile, the jury decided that the whole case was an affront to the freedom of the individual and an Englishman’s inalienable right to eccentricity.

Windham was found to be of sound mind, and free to continue using his dwindling fortune to terrorise the passengers of East Counties Railway.

John Langdon Down, the physician who first described Down syndrome, was appalled at the verdict.

Reflecting on the trial some 25 years later, Down made much of Windham’s tendency to slobber and drool. For him, this was irrefutable proof of Windham’s idiocy and incapacity.

He claimed that trained medical men such as himself would have had Windham locked safely away, thus avoiding the (to Down, inevitable) events of Windham’s post-trial years: a costly divorce, bankruptcy and an early death.

But the contemporary press were just as certain that the jury had been correct in their verdict, as they had resisted the medicalisation of eccentricity. As The Times observed, any other verdict would have been “insane”.

Jarrett S. Those They Called Idiots: the Idea of the Disabled Mind from 1700 to the Present Day. Reaktion Books; 2020

Heaton T. A Scandal at Felbrigg: the True Story of the Notorious Miss Willoughby and “Mad” Windham. Bosworth Books; 2012

Small supports, big difference

Bill Love

6 July 202311 July 2023

Frustrated with the persistence of secure placements, social change body NDTi decided to find local agencies that seemed to be getting it right when it came to keeping people out of institutions. Bill Love reports on a unity of small supports providers

Michelle (surname withheld) celebrates 10 years of living in her own home with a gathering of family, friends and members of Positive Support for You, which provides small supports. Photo: Positive Support for You

For decades the system, or more accurately local strategic direction, has been putting or threatening to place people in secure settings.

Usually this is about options, risks or perceived risks. The act of placing someone in a secure setting is an admission of failure to listen to the aspirations of the person and their family and friends. It is a failure to develop and offer great support within community.

The impact on the person, their family and community is negative, frequently catastrophic and always traumatic.

More than 2,000 people with learning disabilities and/or autism are in inpatient units in England, according to NHS figures.

Segregation by design

Government initiatives that have started with a belief that it is possible to improve segregated services have tended to be abject failures. You cannot retrofit human rights and an individual-centred approach into spaces and systems designed to separate and control.

Breaking local beliefs and fears around procurement processes and having conversations about something that feels new can be hard

Frustrated with NHS England’s Transforming Care programme to move people from inpatient units and into homes in the community, around five years ago, the National Development Team for Inclusion (NDTi) went out to find local support organisations which seemed to be getting it right.

We wanted to understand what enabled people who needed to get out of or who were at risk of secure placements to thrive.

Finding what works

We connected with a handful of leaders who were developing services around the person, in their community and in a sustainable way that provided value for money.

Drawing in the Local Government Association, together with support providers Beyond Limits, C-Change and Positive Support for You, we formed the Small Supports Partnership.

As a partnership, we recognise small supports have several characteristics (see box, below).

We’re working with 11 local agencies at varying stages of development and, over the coming three years, we will be working with 20 more.

Eleanor Roosevelt said it best in 1958: “Where after all, do human rights begin? In small places close to home, so close and small that they cannot be seen on any maps of the world. Yet they are the world.”

Over the last couple of years, we have been working with local agencies to try to understand how small supports can be encouraged and sustained.

Nationally, many of the systems for planning and commissioning services are broken, hampering rather than generating creativity and innovation. However, what exists can be adapted to find and encourage new leaders, develop small organisations and offer the right funding.

Locally, this requires creativity and commitment from commissioners who will walk alongside people and their supports, political will and, above all, the trust of people and families.

The biggest difficulties have been finding and supporting people willing to able to step out of more traditional roles.

Breaking local beliefs and fears around procurement processes and having conversations about something that feels new can be hard. There are some small supports organisations celebrating their 20th birthday, so we know it can be done.

Michelle, who would rather not give her surname, is supported by Positive Support for You in Teesside. She is celebrating 10 years of renting her own home; she was previously in a long-stay hospital. Michelle is now looking forward to buying her own forever home.

She says: “I am a lot happier living in the community and having support so I can do the things I enjoy, like going for walks and shopping for things for my home.”

Bill Love is director of delivery and impact at the National Development Team for Inclusion

Expert input shifts the power dynamics and promotes choice

Experts by experience – who have lived in secure units – were brought on board as equals in a small supports project to ensure commissioning was person centred, says Amanda Topps

Stephen Paul: “I want to see commissioners listening to people and offering them choice, and small supports is one of those choices”. Photo: Ndti

As project lead for one of the first NDTi small supports sites in Lancashire, my focus was on creating a space in which the team felt confident, safe and compassionate. This was because people were sharing challenging issues from a personal and professional angle, and were very vulnerable.

We created this by modelling language and behaviour in our virtual meetings and approach, and taking a slower pace. We were clear about language, for example using “individuals” and avoiding “service users” or “patients”; we wanted to use the language of citizenship.

The programme began in 2021 and sought out experts by experience to join it. Five experts with lived experience of being an inpatient in secure settings took part alongside four expert family carers. Importantly, the experts were paid in line with the NHS day rate if they chose. We employed a small supports friend, who supported the experts before, during and after the meetings.

The advantages of having the experts in the room contributing through what we called listening rounds – meetings where each person has the same amount of time to make a point or contribute ideas or questions – soon became clear. They kept us thinking about how to shift the power dynamics from being professional led to being person led.

It became apparent the experience of the experts leaving hospital was the opposite of person centred. The traditional tendering system meant people had very little if any choice of provider or home. It felt as if very little was planned with them at the centre of decisions.

We designed a new application process for providers, with the experts by experience deciding which of them would be recruited. The experts also designed information in easy read.

I like to think of our team of experts as the gold running through the project; their insights, illuminating the way to improve everything we did, were invaluable.

It is always worth taking the time to listen and build the safe culture needed for all to communicate with confidence in order to unlock this treasure. The project may take longer but, if you build in this expectation and understanding, everyone will benefit from the results. We all now understand why and how we could do better when commissioning support.

Three new support providers are now being matched with their first individual. If those individuals choose to work with that provider towards their hospital discharge, they will be officially matched and together will develop the support plan and the move to a new home.

Stephen Paul is one of the experts by experience who helped co-produce the project. He is also employed as a peer supporter for Lancashire and South Cumbria NHS Foundation Trust.

“I wanted to make sure potential providers were the right people, people who had experience of supporting people with learning disabilities and autistic people. I really enjoyed working on this important project because I got to interview family carers and professionals,” he says.

“My hope is that people will get out of hospital into the community. I want to see commissioners listening to people and offering choice to them, and small supports is one of those choices. I want people to get better support because they’ve chosen for themselves.”

Amanda Topps is an NDTi associate and project lead for Small Supports

The first line of this piece was amended on 11 July 2023 to clarify that the small supports sites referred to is in Lancashire, not the Black Country as stated in an earlier edit of the article.

Ian Goldsworthy: how the road divides on the journey to adulthood

Ian Goldsworthy

6 July 20236 July 2023 — Summer 2023

My son reaches 18 this summer. While other young people move on, his options are more limited, and his coming of age will upend the support that he and the rest of our family rely on

Photo: Seán Kelly, seankellyphotos.com

Two things will happen this summer; Elliott will turn 18 and I will find myself reapplying for my job. Not the 9 to 5 of course (I teach), but the main job – being Elliott’s dad.

When Elliott was three years old, a soft-spoken paediatrician diagnosed him with autism and developmental delay. Since that moment, I have been one thing above all others: the father of a disabled child.

But, since 17 June, I’ve been the father of a disabled man. Having a disabled adult son feels different from having a disabled child.

Maybe it’s because, while he was under 18, the language of Elliott’s life wasn’t so different from that of his peers.

Every child moves through the world of education. Elliott’s time in school may have been in a different location and at a different pace, but he was still learning. If the rail track of his life wasn’t quite parallel, he was at least running on the same gauge as everyone else.

But 18 marks a jumping-off point for his contemporaries. The world opens up for them now in a way that it just isn’t going to for Elliott.

Their lines carry high-speed bullet trains, off in search of love, adventure and success. Elliott’s locomotive is set forever now, endlessly looping on the disabled man branch line with the limits of his future options all too visible.

Elliott’s care needs won’t change just because he’s 18. He’ll still be non-verbal. He’ll still have profound learning disabilities. He still won’t be able to manage dressing, eating or going to the toilet independently.

Yet the tapestry of care that we’ve woven around Elliott – the patchwork of support that has just about kept us standing – all comes to an end in the next few months.

Respite care? Holiday and weekend play schemes? He’s ageing out of all these. The paediatricians who help manage his epilepsy? Transferring him to adult services.

Elliott’s fortunate enough to be at a school that provides an extra year of sixth form but he’s about to start his final year of that.

What comes next is not entirely clear. It seems likely that he’ll be able to attend a local college for a couple of years. But this is a very different proposition from school, not least that it is for only four days a week.

And that seems to sum up the provision that exists for young adults like Elliott. You’ve made it this far – now try to keep going with less of what got you here.

All of Elliott’s classmates and their families are in the same boat and facing the same cliff edge of support.

That seems to sum up the provision. You’ve made it this far – now try to keep going with less

If we want families to continue to support their profoundly disabled children as they reach adulthood – there are all sorts of reasons why this might be preferred – it seems absurd that we are asking them to do so just as support is being withdrawn.

Fundamentally, age ain’t nothing but a number for Elliott. He remains much the same as he was aged three – just supersized. To change anything about his care package because he’s hit 18 feels as random as changing it because he is 37 and four months. It’s an arbitrary line in the sand that is going to upend everything that our boy – and the rest of our family – have come to rely on.

Watching Elliott reach 18 feels like watching a humpback whale breach the waves; it’s an enormous rupture in our lives and one that is sending ripples out in every direction.

Where we all land isn’t entirely in our control but we can be sure it is going to make an almighty splash.

Christmas song in summer

One day, Elliott will go into residential care. His care needs are too great for us to manage indefinitely. The thing I find hardest to imagine about that scenario is the absence of the sound of Elliott in our home.

Elliott loves to jump. It will seem thoroughly odd to not have to pause a conversation because it sounds like he might come through the ceiling. Despite not having any real concept of Christmas, he loves that Mariah Carey Christmas song. It will seem strange to not be listening to that on a hot July day.

He loves to laugh. Sometimes we can tell you why he’s laughing. Sometimes he’s just laughing because… well, who doesn’t like to laugh? When the time does come for him to move on, his unique soundtrack might be the thing that leaves the biggest hole.

In brief

Saba Salman

6 July 20236 July 2023 — Summer 2023

Volunteer idea criticised, good and bad press and carers are in court. Saba Salman reports

Call for legal costs ahead of care death inquests

Campaigners and bereaved relatives have renewed their demands for families to get legal aid ahead of inquests.

This followed the inquest into the 2017 death of Sally Lewis, who had learning disabilities.

Her family crowdfunded for legal help for an inquest.

A Worcestershire coroner concluded neglect contributed to the 55-year-old’s death
from complications caused by constipation. She died in supported living. Care provider Dimensions apologised, saying its support had not been not good enough.

Academics Sara Ryan, Chris Hatton, Katherine Runswick-Cole and David Abbott as well as Deborah Coles, director of charity Inquest – which has long called for automatic non-means-tested funding for legal representation following state-related deaths – wrote in a letter in The Guardian:
“We witness the familiar ‘scandal-review-inquest-lessons learned’ story on its loop… Sally’s family have no access to legal aid.”

Sibling Julie Bennett described her sister as “our sunshine”.

Fundraiser for legal costs

Social care legal agency CASCAIDr recently held its annual Access to Justice fundraising walk.

This aimed to highlight the growing gaps in adult social care and to raise money for families’ legal costs.

People can still donate online.

Guide supports people to help others decide

A guide to ensure people with a learning disability are genuinely involved in decisions about their lives has been published.

Training and development organisation Paradigm has published A Practical Guide to Supported Decision-Making on its website.

Supported decision-making entails helping a person to make their mind up over issues and changes.

The guide highlights that the right to be involved in decisions is reinforced by the UN Convention on the Rights of Persons with Disabilities, the Mental Capacity Act 2005 and the Care Act 2014.

The guide, an update of a 2008 version, is intended to make people feel more confident about supporting others to make decisions.

It explains aspects of law and gives practical help through real-life examples and tools such as a decision flow chart.

Self-advocate calls for good lives at conference

Self-advocate Gary Bourlet urged people to back Learning Disability England’s (LDE) Good Lives project at its conference in the spring.

“We want to continue building a movement for change. Good Lives is a common cause we can all stand behind,” he said.

Bourlet is membership and engagement lead at LDE, which unites people with learning disabilities, families, friends and paid supporters in a movement for change.

There were three opportunities for people to attend the event, with in-person meetings held in London and York, as well as one provided online.

Good Lives, which was launched last year, involves sharing ideas on what it will take for everyone with learning disabilities to be able to live a good life.

One attendee at York said: “Being with this community – this group of individuals who share the same vision and are all equally passionate – fills up the tanks for the work that still needs to be done.”

News briefs

Covid and race report due

The Commission on Covid-19, Ableism and Systemic Racism will publish its final report on 13 July. The commission, established by the Voluntary Organisations Disability Group with funding from the Joseph Rowntree Charitable Trust, has explored how Covid’s worst impacts have fallen on disabled people from black, Asian and other minority ethnic groups.

Time off to care becomes law

A bill giving employees in Britain the right to unpaid leave to care for older, disabled or seriously ill relatives or friends has received royal assent. The Carer’s Leave Act 2023 will mean staff juggling work and caring can take up to five days of unpaid leave to support their loved ones.

Injustice topic of first talk

Talks to raise awareness of learning disability issues are being organised by support charity LDN London. The first, on Thursday 13 July at the London Canal Museum near King’s Cross, will be chaired by historian and Community Living writer Simon Jarrett. It will focus on the injustice of people still being locked up in assessment and treatment units.

Scheme to unite carers

Sheffield Mencap and Gateway has won more than £250,000 from the National Lottery Community Fund for a new scheme for those caring for people with learning disabilities or autism. The Carers Support Service responds to needs identified in Sheffield City Council’s 2022 report into the impacts of Covid-19 on carers and will bring together carers across Sheffield to form social support groups.

What’s on our radar

Government plans for social care volunteers have been met with huge criticism.

The plan is to expand the NHS volunteers scheme into social care, with people picking up prescriptions, food shopping or visiting for a chat.

Ministers insisted they would not replace “valued, paid health and care staff”. There are 165,000 social care vacancies and £500m pledged for the care workforce was recently halved.

Campaigners have condemned a story in The Telegraph on “Exactly how much of your salary bankrolls the welfare state”. Disability Rights UK complained to press regulator IPSO, saying the story targeted disabled people – already hardest hit by the cost-of-living crisis – as unworthy of state support.

In contrast, there was a boost for inclusion when Ellie Goldstein landed the cover of British Vogue – the first model with Down syndrome to do so. The “dynamic, daring and disabled” issue in May featured 19 figures with disabilities from fashion, sport and the arts.

A Fabian Society report, requested by the Labour Party and commissioned by public sector trade union Unison, has outlined a new vision for social care. Support Guaranteed promotes long-term solutions and more choice and control for individuals and their families. Proposals included more pay for care workers, more free support and a £25 or £50 a week non-means tested payment towards care costs.

As we went to press, four carers were due to be sentenced at Teesside Crown Court in July for crimes they committed while working at Whorlton Hall. The men were found guilty of ill-treating patients at the secure hospital following a BBC Panorama investigation.

Spotting the soft signs

Andrew Bright

6 July 202312 July 2023 — Summer 2023

Signs of illness can be difficult to identify, as can getting services to listen. Andrew Bright describes projects tackling these

Trainers Kiran Kaur (above) and Jordan Allan: most sessions were given by people with a learning disability. Photo: Thera Trust

Nearly half of all deaths (49%) in people with a learning disability are avoidable, of which 8% are related to cancer, according to Learning From Lives and Deaths report funded by the NHS and published by King’s College London in 2021.

Given these findings, Thera Group, alongside people with a learning disability, worked on two projects to tackle the health barriers they faced.

Spotting deterioration

In the first, we were involved in the roll-out of RESTORE2 Mini, a health awareness tool for the social care sector developed by NHS West Hampshire clinical commissioning group and the Wessex Academic Health Science Network.

RESTORE stands for Recognise Early Soft Signs, Take Observations, Respond and Escalate, and was designed for care homes; RESTORE2 Mini is a more condensed, user-friendly version for unpaid carers and supported living staff.

It was designed to help people recognise soft signs of health deterioration (such as changes in mood or communication) and know how to start conversations with health professionals in a timely way to get the right support.

When the NHS sought to expand this work to include carers, it engaged specialist providers such as Thera to adapt resources, which included observation charts and information on how to escalate a issue either with social care staff, a GP or an ambulance service.

Our service quality directors – people with a learning disability in paid roles – led and contributed to working groups, advising on amendments and accessibility.

We were then awarded funding from NHS England to roll out training on RESTORE2 Mini and raise awareness of the STOMP pledge (Stop Over-Medicating People with a learning disability).

The pledge is a national initiative to stop the overuse of psychotropic medicines and increase carers’ awareness of their use, enabling people to challenge over-medication where appropriate.

Between March and December 2022, we trained over 50 people to deliver the RESTORE2 Mini and STOMP programmes. Fifteen of the trainers had a learning disability.

They delivered awareness sessions to groups in their communities in Manchester, London, Darlington and Lancashire, which included social care staff, people with a learning disability and their families.

The training reached more than 500 people during 2021-22, with over two-thirds of sessions delivered by those with a learning disability.

One learner told us: “Having an expert by experience in the group to share their own thoughts and experiences made the training meaningful. It gave me the tools to reinforce my decisions when it comes to the health and wellbeing of the people I support.”

After the sessions, almost all of the 50 trainees felt more confident in both supporting people with their health and speaking up to medical decision makers.

Jordan Allan training — Jordan Allan. Photo: Thera Trust

Finding cancer

Our second project related to the Learning From Lives and Deaths report on cancer-related avoidable deaths.

Christine Harvey, lead director of Ansar Projects, part of the Thera group of companies, started conversations with CoppaFeel! and Orchid after struggling to find accessible health resources for breast and testicular cancer.

Ansar Projects partnered with breast cancer charity CoppaFeel! and male cancer charity Orchid to create accessible resources to help people know their bodies and seek medical advice if they noticed changes at an early stage.

We believe the Know Your Body materials, launched in October last year, are the first of their kind. They include information packs, self-checking cards, symptom guides, patient stories and information on what to do if they notice a change.

It is hoped is these initiatives will mean illness is detected earlier and premature deaths prevented.

Andrew Bright, Thera group lead director, quality and involvement, worked with Thera colleagues to write this article

Struggling to live in a baffling world

Virginia Bovell

6 July 2023 — Summer 2023

Un-typical: How the World isn’t Built for Autistic People and What We Should All do About it

This is an eye-catching book, not least because of its bold cover.

Wharmby, a writer, speaker and advocate, did not realise he was autistic until his diagnosis in 2017 aged 34.

A former English teacher, he now devotes himself to raising awareness of autism and neurodivergence.

This is his second book, in which he takes us through his childhood and adult life, offering graphic examples of how the world is not built with the neurodivergent population in mind.

He extends his personal account to an exposure of the tropes and misunderstandings about autism and autistic people that prevail in much of mainstream society.

Untypical

Author: Pete Wharmby

Published by Mudlark, 2022, £16.99

The chapters are interspersed with bullet points offering practical suggestions about adjustments that can make life easier for autistic pupils, students, workers and others. His concluding call for justice extends these recommendations into morality and social change.

Wharmby’s accounts of his own struggles are delivered in a highly readable and sometimes humorous way. Having been both a pupil and a teacher, he is particularly graphic about how overwhelming school environments can be.

Irrational interactions

He also writes powerfully about the anxiety and exhaustion that comes from trying to navigate the opaque rules and seemingly irrational interactions around general social exchanges.

He brings to life some of the worst aspects of feeling out of kilter with the wider sensory and social environment, while pointing out several strengths he considers to be typical of autistics – a capacity for passionate interest, tenacious pursuit of justice and single-minded focus.

Yet he also repeatedly refers to autism as a disability (however intellectually gifted a person may be), and hints that not all the difficulties are socially or environmentally generated – a point that causes disagreement within the autism community.

Wharmby stresses that no one can speak for everyone on the spectrum, highlighting the issues affecting those with intersecting differences, such as race or learning disability.

Wharmby does us a great service by describing his sensory distress and meltdown so well. His emphasis on the damage done by having to mask behaviours such as stimming (self-stimulatory behaviour – repetitive or unusual movements or noises) may resonate chiefly among those who are intellectually able enough to pass as someone who is not autistic. (Masking would be a non-starter for my learning-disabled autistic son.)

If there is one book to give to people who are new to autism, this is the one. While not always a comfortable read, it is a page-turner – interesting, informative and compelling. In pointing to ways in which society could and should adjust better to autistic people, he is also offering a vision of more interesting and kinder world for us all.

Saba Salman: Inclusion needs to be visible to bring change

Saba Salman

6 April 202320 June 2023 — Spring 2023

Editor Saba Salman highlights the stories in this issue which look at inclusion in the creative sector

City Lit Percussion Orchestra - man beating drum

City Lit Percussion Orchestra – photos: Phillip Hartman photography.

Inclusion: some employers appoint entire committees to scrutinise the issue; others treat it as a tick-box exercise.

Much of our latest coverage explores inclusion in the creative sector. This focus is timely given the success of An Irish Goodbye, which has won a Bafta award and, more recently, an Oscar.

Yet, as filmmaker and cover star Claire-May Minett tells us, inclusion can just mean “a little bit more understanding”.

Inclusion can mean issues are represented through the arts, such as in Henny Beaumont’s work, and on stage and TV. It can mean people are directly involved, as in City Lit’s Percussion Orchestra and dance.

Such visibility is vital because creativity is a force for protest and change, as Sara Ryan writes of a landmark exhibition at the People’s History Museum.

Shining a light on inclusion is vital given the fresh barriers to progress. With local elections ahead, the need for photo ID at polling stations makes voting even more difficult.

Beyond the arts, employers of all kinds should read Alice Hewson’s words on inclusive workplaces. US-based Mary O’Hara also looks at equal employment in her introductory “lessons from America” column, with a promise to compare progress on learning disability issues at home and abroad. Home in a literal sense is a topic shared by columnists Shalim Ali and Chris Hatton.

Other notable articles include George Julian’s awareness-raising reporting from courts, Paul Christian making black history accessible and Virginia Bovell challenging assumptions around friction between families and self-advocates.

Change from the grass roots

Shining a light on inclusion is vital given the fresh barriers to progress. Difficulties include the cost of living crisis, the lacklustre SEND reforms and the spring budget’s failure to address learning disability support. With local elections ahead, the need for photo ID at polling stations makes voting even more difficult.

Against this harsh backdrop, the push for progress continues apace – driven, as ever, from the bottom up.

Saba Salman
Editor

Pandemic hit minority ethnic groups hardest

Saba Salman

6 April 202320 June 2023 — Spring 2023

Black, Asian and minority ethnic members of the learning disability community have been describing the pandemic’s disproportionate impact on their lives

Kamran Mallick, chair, VODG Commission on COVID-19, Disablism and Systemic Racism – photo: VODG

Early findings from the National Commission on Covid-19, Disablism and Systemic Racism, led by the Voluntary Organisations Disability Group, have outlined people’s negative experiences.

Problems include a lack of accessible information and assumptions that family members would step in to help when lockdowns led to people losing care and support.

One care worker told the commission they believed that people’s “very poor outcomes” were “not only due to their learning disability but also possibly due to their ethnicity”.

The commission’s report will be published by the summer.

Although the Covid public inquiry is under way, it is not due to investigate structural racism. This is despite the fact that people from minority ethnic backgrounds were more likely to die from the virus.

Want to vote? You’ll need photo ID

Saba Salman

6 April 202320 June 2023 — Spring 2023

From this year, voting will become more difficult as photo ID will be needed at polling stations. However, help is at hand, says Saba Salman

At the polls: accessible manifestos are needed as well as information on elections – Photo: Seán Kelly

An estimated one million people with a learning disability in the UK are entitled to vote in the local elections on 4 May.

But, although this is a right in the UN Convention on the Rights of Persons with Disabilities, the Electoral Commission estimates that one in four people with learning disabilities are not registered to vote.

Now, a rule change designed to prevent voter fraud and introduced in the Elections Act last year could make voting even more difficult.

Voters will need to show photographic proof of identity. This rule applies to local council elections in England, parliamentary by-elections, and police and crime commissioner elections in England and Wales. From October this year, photo ID will also be needed at parliamentary general elections.

This could be a problem for those who do not have an approved form of photo ID such as a driving licence (including a provisional licence) or passport, or those who are unaware they can use their freedom pass, disabled person’s bus pass or blue badge photocard. ID that is out of date can be used if the photo still looks like the person.

People who do not have an accepted form of photo ID can apply online for a free voter ID, called a voter authority certificate, by 5pm on Tuesday 25 April to vote in the local elections. They need to be registered to vote first.

Mark Brookes, advocacy lead at support provider Dimensions, has previously reflected the concerns of many when he warned that the introduction of photo ID had “worrying implications for voter participation.”

The Electoral Commission has acknowledged how “some groups are more likely to experience barriers with this change and may need support to access photo ID”.

To address this, it has put information packs for organisations on its website, including resources to support disabled voters as well as an easy-read booklet.

Barriers at the polling station

The need to show photo ID is not the only barrier to voting.

Other problems include a lack of easy-read information on voting and elections, inaccessible manifestos and physical barriers for voters with a mobility, visual or hearing support need.

For example, research among 2,000 people by support provider United Response in 2021 showed that nearly half agreed polling stations should be made more accessible to people with physical or learning disabilities.

Only two-thirds of these respondents knew people with learning disabilities had a legal right to vote, while 36 said they had been turned away from their polling station because of their disability.

United Response is among the learning disability charities that produce accessible voting guides or signpost people to any available easy read manifestos. Its Every Vote Counts project raises awareness about voter participation.

Another effort to encourage people to take part in elections is the Love Your Vote campaign run by Dimensions. Mencap produces easy-read voting materials and has worked with the Electoral Commission on accessible guides.

Dimensions, Mencap, United Response and Ambitious About Autism recently launched the My Voice My Vote campaign to boost awareness about voting ahead of next year’s general election.

With photo ID on the horizon, local and regional projects like this are crucial alongside more general, national campaigns

As Brookes warned: “As the bar to accessing paid support gets ever higher… those in need of support but not in receipt of any will inevitably be the most disenfranchised by any additional barrier blocking our path to voting.”

Some groups are more likely to experience barriers with this change and may need support.

Meader’s view: Spring 2023

Robin Meader

6 April 202320 June 2023 — Spring 2023

The latest from Community Living cartoonist Robin Meader

Behind the camera

Seán Kelly

6 April 202320 June 2023 — Spring 2023

Claire-May Minett has been making short films with Jules Hussey to accompany a BBC series. Seán Kelly joins them behind the scenes

Claire-May Minett at a Bafta event: “I can now be freelance and work on many different productions with a bit more understanding”.

“It was the best job I have ever had,” says Claire-May Minett. “Everyone was so kind and considerate, helping me, supporting me. I couldn’t believe it.”

Minett is describing her work as a paid trainee filmmaker behind the scenes for the 2022 BBC series Ralph and Katie, about a couple with Down syndrome.

Minett, aged 44, has mosaic Down syndrome, which is not a visible disability. She says: “People don’t realise until they have met me a couple of times that I actually am kind of impaired in some way, and then they will try to bully me or tease me. I have had this most of my life.”

On a previous job, for example, she had to do things in a certain, fixed way, even though her own way worked better for her. She adds: “I got told off for treating a bigwig manager like everyone else.”

But that did not happen when she worked alongside Ralph and Katie producer Jules Hussey, making a series of online behind-the-scenes shorts to accompany the show.

It was the first TV job in over 10 years where Minett has not experienced discrimination. She was so pleased that she created her own award for the team, buying a small trophy and getting it inscribed.

Jules Hussey as an extra on Ralph and Katie

This inclusion is the exception rather than the rule, which speaks volumes for Minett’s indomitable spirit in pursuing a career in the industry.

Disability and learning disability have featured in films, most recently in An Irish Goodbye, which won both an Oscar and a Bafta. However, a recent report by non-profit group Creative Diversity Network estimates it will take almost two decades for disabled people to be properly represented in the sector.

While 17% of the UK workforce is disabled, in TV only 4.5% of those behind the camera and 6.8% in front of it have a disability.

Ralph and Katie broke new ground in British TV by having two lead actors with Down syndrome; perhaps even more remarkably, many more people with disabilities were involved behind the camera.

All the script writers had disabilities and Hussey says the crew included people with learning disabilities, autism and mental health issues, plus a person with a physical disability and someone who was deaf.

Director Jordan Hogg has cerebral palsy, although Hussey laughs “actually his real disability is voting Tory”. It is clear they are friends.

Hussey was employed on Ralph and Katie but says the inclusive approach comes from her own company, Brazen Productions. It is also rooted in her experience as a life-long advocate for her 56-year-old brother Martin, who has learning disabilities and autism.

We’re all different

“The ethos of my company is very much taking the approach that everybody is different. It’s not about saying ‘this is a disabled project’. It is saying ‘we will ask everybody how we can support them to do the best possible job’. And that is people who identify as disabled and people who don’t, and people who have caring responsibilities.”

One thing that made a difference on Ralph and Katie was a free phone app, Call it!, which Hussey helped create. The app, launched in 2021, sends anonymous feedback to employers about how employees feel they have been treated.

Minett says: “You can touch the green one if it’s been a happy day or the red one for not being happy, for example if someone’s said something that hurt you.”

Hussey feels the app is a sign of how things are changing and TV and film employers are starting to realise they are accountable.

The production used easy-read call sheets, which outline the filming schedule, for the actors and crew. Hussey also introduced fun things to help break down barriers and “reset relationships” after long days working together on the same sets.

There was a lot of dancing involving the cast and crew, a magician who came in to teach tricks, and a petting zoo – which included a snake.

Occasionally, some crew members became frustrated about the extra time needed for some of the activities and adjustments. This was solved by Hussey explaining the positive impact in that it made all team members feel more included.

People always fear inclusion will cost more, she says. “And that’s not the case. You just need to move the money about.”

For example, everyone wore name badges, which improved accessibility at a low cost. Hussey says adaptations should be made in all productions, not be stuck in a disability silo,“because everybody benefits from a reasonable adjustment”.

What are Minett and Hussey proudest of in their work?

Minett says: “The fact that I can now be freelance and work on many different productions with a bit more understanding.”

Hussey says her pride comes from “being considered an ally by disabled people, being trusted”.

She adds: “I am proud of the fact that organisations like these absolutely consider me on their side. Not stepping in front of them and leading the way but walking side by side. They acknowledge my different lived experience and the fact that I am not trying to be their saviour.”

She has worked alongside disability-led organisations such as Triple C (which helps deaf, disabled and neurodivergent people access the arts and media), Manchester’s Disabled Artists Network and the Deaf and Disabled People in TV forum.

Hussey is keen that people with disabilities are shown as being ordinary: “I get quite annoyed by representations of autism where everybody has got a special skill and it’s all marvellous. It’s just so unrealistic.”

Sometimes people ask about her brother’s special skill. She laughs: “I say ‘masturbating’ – just to shut people up. Because everyone thinks there is a special skill.”

Is having an autistic brother the spark for her commitment to inclusion for disabled people? “It didn’t spark it because it just, to me, seems bloody obvious.”

She tells me about her 54 years of experience advocating for a severely learning disabled man who needs one-to-one support.

“Things were very different when he was young. There was little knowledge of autism. I wasn’t allowed to be involved in school activities because of my brother. I know we have so many problems with disability and equality but, my God, we have come a long way from the 1970s.

“I haven’t stopped and gone ‘I’d be really good at inclusion because of Martin’. It’s just how I am. It’s more the case that I think: well, why are people not doing this?

It’s so easy.”

As for the future, Minett says she would love to do more behind-the-scenes films. Hussey has news: the BBC is to support Brazen through its Small Indie Fund, meaning extra money plus mentoring and support to, as Hussey says with optimism, “get disabled people’s voices into the mix”.

Images: Ben Blackall (Jules Hussey as a postwoman) and Jules Hussey (all other images).

A quest to see justice being done

George Julian

6 April 202325 September 2024 — Spring 2023

The public is often unaware of what is said in a coroner’s court. George Julian reports and live tweets from courts to raise awareness and scrutinise the reasons why so many people with learning disabilities are dying from often preventable causes

HM Coroner's Court Surrey - outside view

Coroner’s court: many families never secure an inquest into their relative’s death – photo: Surrey County Council News/Flickr CC BY ND 2.0

Many of us will go through our lives without ever setting foot in a courtroom.

It’s important that the essence of a person is not lost in the detail of reporting their death, says George Julian – image: Becky Whinnerah

With the continued decline in court reporting, the press bench and public gallery of courtrooms are often empty. This means important decisions are made and conclusions drawn far from any public audience or scrutiny.

According to a recent report from the House of Commons Justice Committee: “The decline of print media has resulted in court proceedings being less visible to the public and digital media has so far failed to fill this gap.

“Many regional titles have shut down and those that remain are no longer able to employ dedicated court reporters, meaning it is harder for people to see how the justice system operates in their area.”

The key principle of open justice is that justice must not only be done but also be seen to be done, which means court proceedings should be conducted in public. This principle is underpinned by article 6 of the European Convention on Human Rights, which relates to the right to a fair trial.

We know and have known for far too long that learning disabled and autistic people are dying decades prematurely, often from preventable causes.

I report in the hope that it raises awareness and provides scrutiny into why so many people are dying from often preventable causes such as drowning, constipation, unwitnessed seizures, malnutrition and neglect.

Most of my reporting is from coroners’ courts. I occasionally report from other courts, such as the court of protection, the high court or magistrates’ courts when the cases concern learning disabled and autistic people, usually trying to secure their human rights.

The first inquest I reported was that of 18-year-old Connor Sparrowhawk in October 2015. The inquest found that his death – he drowned in the bath as a result of an epileptic seizure – was contributed to by neglect. I think the idea of me covering the inquest came from Caoilfhionn Gallagher KC, the family’s barrister.

The most frustrating aspect is how variable coroners and their courts are – it is a total lottery.

After Connor’s inquest, other families and legal professionals started contacting me. They were seeking to raise awareness about other premature deaths or situations where learning disabled and autistic people were having to use the courts to try and secure their human rights.

Since Connor’s inquest, I have reported from more than 20 inquests, a similar number of pre-inquest review hearings and about 10 other court hearings.

All of my reporting is crowdfunded. I have about 50 people who support me monthly, and also receive one-off donations. I used to crowdfund just to cover my travel costs, but now I’m able to pay myself a small amount to cover my time. I periodically report on how much money I have raised and how it has been used.

As a journalist, I do not require permission to report from court, but I have a rule for myself that I do not live tweet unless I’ve heard from a family member or their legal representatives that they wish this to happen. If I have not managed to make contact with a family then I will still report but usually do so in a blog post or video blog, which contains much less detail than live tweets.

Behind the scenes, I spend hours on the phone to bereaved families, many of whom may never secure an inquest. I listen and offer support, with the first response always being to secure legal representation.

Before an inquest, I compile a blog post or Twitter thread that introduces the person, who they were, the role they held in their family or social circle and the things they liked and disliked. It’s important to me that the very essence of someone is not lost in the detail of reporting their death.

Since I started reporting, it seems harder to secure an article 2 inquest (into cases where someone has died while being in the care or custody of the state) and harder for bereaved families to secure Legal Aid funding.

Yet, somehow, despite the financial pressures on health and social care services, providers always find the money to secure external legal representation and, occasionally, the services of PR firms too.

This inequity in the justice landscape has coincided with a decline in court reporting – external scrutiny and reporting are needed now more than ever before.

What drives me is the injustice of it all. I question my own role often and whether it is changing anything or just adding to the noise. But I always come back to the fact that more needs to be done, and more people need to know about how and why people’s lives are cut short.

Without a doubt, the most frustrating aspect is how variable coroners and their courts are – it is a total lottery. This is closely followed by the inequity of the system.

I find it incredibly difficult to witness bereaved families representing themselves or resorting to fundraising to pay for legal representation, often while faced with multiple interested persons with legal teams paid for by the public purse.

Reporting devastating cases and working with bereaved families, it is important to find equilibrium. So I try to ensure my other paid work is in a related space – looking for solutions – and try to focus on improving people’s lives.

I am lucky that I have a network of like-minded souls around me, including self-advocates, researchers, family members and legal professionals.
It is a privilege to do this work, and to pay witness to people’s lives and deaths.

‘Expectations are low: relatives report being happy with care the CQC rates as inadequate’

Since July 2022, I have regularly reported on care for learning disabled and autistic people found to be inadequate by the Care Quality Commission (CQC).

I have shared my reports as well as any action taken by the regulator on my blog and social media.

Last summer, I had an inquest adjourned at the last minute. As I had set aside time to work on this case, I decided to spend it examining the detail of the most recent CQC reports.

Once I started looking, I couldn’t stop. I was horrified that so many providers, including large national charities, were providing care the CQC considered inadequate.

These reports, rarely read by more than a handful of people, described numerous horrors and depicted lives lacking ambition or care – almost living deaths. I decided to try to raise awareness of what the CQC had found.

I found lots that shocked me. I’ll focus on two issues.

First is how little care deemed outstanding is provided to this group of people (less than 1% of all services inspected in 2021 and 2022), yet how astute the CQC inspectors appear to be. It seems that they are focusing on the detail of people’s lives, which is positive.

Second is how low expectations are. So many times, relatives report being happy with provision that CQC rates as inadequate.

I hope my reporting in this area is providing a focus on some of the detail often buried deep in a regulator’s website, rarely reaching the wider world.

Black history is brought to life

Paul Christian

6 April 202320 June 2023 — Spring 2023

The hardest part was deciding to what leave out, says Paul Christian, who explains how he is creating easy-read information on black history from research to critical review

Paul Christian at the George Padmore Institute: Newton Rose’s murder conviction was quashed after campaigning by activists – Photo: Sue Ledger

I want to make black history come alive for people with learning disabilities.

I am a black British man of Jamaican heritage who has lived with the label of learning disability since I was a child.

I was never taught about black history at school. As an adult, this information was not available in a format I could understand. Because of that, I feel I lost a part of myself.

In the last issue of Community Living, I wrote about working with the George Padmore Institute to support people with learning disabilities to access this important black history archive.

The centre, in north London, is named after influential pan-Africanist and writer George Padmore.

This second article focuses on collaborating with the institute to make new easy-read materials, with information in simple language, illustrated with pictures.

Following the brutal killing of George Floyd in 2020, I began researching and writing in support of Black Lives Matter. I asked Sue Ledger, an Open University researcher, to support me.

We work as co-researchers and co-writers on the project with the institute and in preparing this article.

Finding black history

Gaining access to black history is not just my problem but one for people with learning disabilities more widely.

Generate Voices, for example, is a group of people with learning disabilities, facilitated by London‐based community support and employment organisation Generate. The group came together to take action against racism, raising the lack of accessible black history as a problem.

My work with the institute involved five visits. I interviewed archivist Sarah Garrod and researched documents and images.

We made easy-read documents for two collections that seemed important to share: the life and work of John La Rose, a black British writer and publisher who led campaigns to fight for the rights of black people in the UK (pictured); and the 1981 New Cross fire where 13 young black people tragically died at a birthday party. Some people thought the fire was a racist attack but no one was ever arrested.

I wrote a third document introducing the easy-reads and explaining the importance of accessible information.

Taking lots of photographs helped me to remember the stories and choose the best images. The first drafts were reviewed by speech and language therapist and story-sharing expert Nicola Grove.

Generate Voices acted as critical reviewers. Generate members engaged with the stories, started new conversations about racism and history and said the work provided them “with the freedom and platform to fully express their views, opinions and suggestions”.

Their feedback led to substantial improvements in the easy reads which are now being finalised. They will be available by the end of May at the institute and on the Open University Social History of Learning Disability website.

Garrod says: “I hope we can eventually create easy reads for all our collections. We need to work with everyone to ensure that our resources are useful and easy to follow.”

Writing easy-read material was new to me and the whole process, including research and critical review, took over 12 months.

The hardest part was deciding what to leave out. John La Rose, for example, did so many things.

A model for the future

Future materials could be produced in a much shorter period. I hope the process we developed with one black history archive will encourage similar organisations to make their own collections more accessible.

For our part, it’s important we speak up and claim our right to better understand history and the contributions of the black community past and present.

Today, black people continue to face racism both individually and from systems embedded in institutions. I hope trying to get the word out about black history will make it easier for younger people, black and white, to understand and recognise prejudice. I see this work as an important part of tackling racism today.