Twitter, as everyone who uses it knows, is a cesspit: a place to get shouted at by strangers and fight off anonymous trolls. So imagine my surprise when my jokey little tweet set off an enormous wave of love, pride and the very best in humanity.

It was New Year’s Day. I was lying on the sofa with my 24-year-old son, Joey, and we were giggling at one of our routine jokes. I took a few selfies of us having a cuddle, was pleased with one of them and tweeted it out with the simple, ironic message: “So terrible being the dad of a learning-disabled young man.”

I thought nothing more of it until I returned to my phone and saw a steady stream of notifications: likes, comments and retweets.

Happy, ordinary things

I was especially struck by the hundreds of pictures pouring in of families with a learning-disabled relative doing happy, ordinary things – climbing mountains or walking on a beach, bouncing on trampolines and posing in Christmas pyjamas – all laughing, smiling and having infectious, glorious fun.

Each carried its own pithy little message of mock gloom: “Another day of misery”, “Awful sadness”, “Such dreadful hell” and so on. I replied to each one with mock sympathy: “Oh how awful”, “So grim”, “Thoughts and prayers”, and suchlike. For three frantic hours on Friday evening, I could hardly keep up. And, when I woke up on Saturday, it was still going strong. By Monday morning, I was on the Today programme on Radio 4 talking about what had happened and what I thought it meant. It was clear that Joey and I had struck a chord. Because families of learning-disabled children are so often made to feel that their situation is deeply tragic, my tweet, I believe, encouraged them to show that they don’t just love their child to the moon and back – their child has taught them more about life, love and laughter than outsiders might expect. And they wanted to express that publicly.

Joey, my second son, has severe learning disabilities and intractable (if medically managed) epilepsy. He has no speech and communicates with a limited vocabulary of simple Makaton signs, pointing fingers and a golden smile. He’s an endearing young man (I would say that, wouldn’t I?) who, for the most part, brings out the best in people. But he requires constant care to manage the simplest of tasks. His learning disabilities are not to be underestimated. When he was young, the suggestion was sometimes made that Joey must be a “sadness” to us. We constantly encountered tilted, concerned faces of – dare I say it? – somewhat manufactured sympathy, especially from people whose job it was to manage his future. In the process, we discovered that the only way to get him what he needed was to emphasise in the endless paperwork just how “bad” he was at everything – a failure and a danger to himself and others.

Parents revel in their children’s achievements, but those of us with learning-disabled children are forced to do the opposite – focus on the things they’re not good at and share, in crushing detail, our anxieties about their future. The struggle for Joey tore chunks out of us and such continuous negativity can be soul destroying.

Creative anarchy

What is forgotten is just how creative, enjoyable and splendidly anarchic sharing a life with a learning-disabled person can be. Joey has had a hugely positive impact on our family. I could not be prouder of the influence he has had on his elder brother, Laurie, and younger half-sister, Bea, who are much kinder, more intuitive and empathetic than I ever was in my youth. Clever as they are, they know that some things are more important than being brainy. Loving Joey is the easy bit. He’s no tragedy. It’s fighting for his future that hurts.

Parents of learning-disabled kids fight like Trojans to get our children what they deserve. But we’d gladly lay our weapons down if we could. We are driven by love –nothing else. There are challenges, frustrations and griefs to navigate. But raising a learning-disabled child really isn’t an unremitting tragedy. A particular mixture of pragmatic acceptance, raucous laughter and undying love rings through our houses.

This Twitter storm demonstrated that families don’t need “thoughts and prayers”. What we’re asking for is inclusion in all aspects of life and practical, high-quality and easily accessed support. Above all, we want society to embrace our kids as equals. As Joey’s then six-year-old sister once said to a friend alarmed by his lack of spoken language: “You don’t have to be scared of Joey. He’s just disabled.”

This life-affirming stream of beautiful photographs showed me that thousands of families with learning-disabled children are determined to bear witness to the unquenchable, overflowing love they feel for their children, however different, however ignored, however misunderstood. It’s just possible that the big-hearted and defiant response to my jokey little tweet suggests that things might change.

It’s a moment of hope.

A surprising pandemic effect

Murray GC, McKenzie K, Martin R, Murray A. The impact of COVID-19 restrictions in the United Kingdom on the positive behavioural support of people with an intellectual disability. British Journal of Learning Disabilities 49(2):138-144. https://onlinelibrary.wiley.com/doi/10.1111/bld.12379

It has been assumed that the Covid-19 pandemic and the restrictions associated with it would have a negative impact on positive behavioural support (PBS) for people with learning disabilities. However, an online survey of 58 staff who had recently completed a PBS programme revealed a rather different picture. Apart from the obvious restrictions on activities that lockdown imposed on the whole population, the interviewees reported that there had generally been a neutral and sometimes a positive effect on their support for people.

Many staff developed creative solutions for providing support. They were able to spend more good-quality time with individuals, and offered support and reassurance over the phone. They became more flexible in supporting people to become more settled and retain their quality of life, even if things had changed because of pandemic restrictions.

Respondents also felt that the person they were supporting had opportunities to make choices and learn new skills. Some felt they had thought and reflected differently on “behaviours”, leading to a better understanding of how changes affected people and how to support them to cope with changes in routine.

Drawbacks and benefits of personal budgets for carers

Turnpenny A, Rand S, Whelton B, Beadle Brown J, Babaian J (2021) Family carers managing personal budgets for adults with learning disabilities or autism. British Journal of Learning Disabilities 49(1):52-61.  https://onlinelibrary.wiley.com/doi/10.1111/bld.12348

While a rising number of people with learning disabilities are accessing personal budgets in the form of direct payments in England, these budgets are often managed by someone else, typically a parent. The authors interviewed 13 family carers who manage personal budgets about their experience of setting up and managing payments for their relative with a particular focus on issues around securing suitable support and the implications for their own wellbeing.

Interviewees reported positive outcomes for themselves, such as being able to stay in employment and achieving a better work-life balance and family life. They identified difficulties in managing the dual role of professional and family carer and found they needed resilience and determination to manage the complexities of the system. Motivations for establishing direct payments included more choice and control over the delivery of support, more flexibility than traditional services and better continuity and consistency of care. There were, however, constraints on both how budgets could be spent and what was available in local areas.

Overall, flexibility was cited as a big plus, because it allowed arrangements to be less formal and more responsive.

Minority vegetarians

Bates C (2021) “I heard about the way the animals are treated and slaughtered, and I don’t like it”– attitudes of vegetarians or vegans who have learning disabilities. British Journal of Learning Disabilities, 49(1):62-71.  https://onlinelibrary.wiley.com/doi/10.1111/bld.12343

This research is based on interviews with eight people with learning disabilities who are vegetarian or vegan. Their over-riding reason for not eating meat was concern over animal welfare. They cared passionately about the welfare of animals. They often found themselves in a minority among other people with learning disabilities and felt inhibited about advocating their lifestyle to others.

One interviewee felt people with learning disabilities were often patronised and not exposed to the same information as the rest of the population. Most were reluctant to push their views, citing discomfort with advocating animal rights to others. Health was also cited as a factor in people’s eating choices, with interviewees saying that they wished to avoid hazards they associated with meat eating such as weight gain and certain cancers.

The author concludes that, in their diet choices, people with learning disabilities are often seen as homogenous rather than having a multiplicity of viewpoints. Vegetarianism and veganism can offer people the chance to integrate into mainstream organisations where their views are shared but this will only happen if such organisations are inclusive.

It matters where you live

Wark S (2020) Does intellectual disability research consider the potential impact of geographic location? Journal of intellectual and Developmental Disability 43:3:363-369.  https://doi.org/10.3109/13668250.2017.1310826. Also in: Clegg J (ed) (2019) New Lenses on Intellectual Disabilities. Routledge

This paper considers a point that seems obvious once highlighted but is often overlooked: the tendency of researchers not to consider geographical location as a factor in their findings. The paper makes its point well. Half of the research examined in this literature review did not give any information about geographical location of participants at all, sometimes not even identifying the country in which they lived.

Given the socioeconomic disadvantages within many rural areas and the large disparities in lifestyle and access to facilities between urban and rural settings, this is surely a major omission, the authors argue. Not taking geographical location into account in research can lead to important factors being disregarded. For example, people living in very isolated areas may have no alternatives to the services they use, staff may have little access to training, and public transport systems may be limited or nonexistent.

The absence of geographical information in many studies masks both a reliance on research carried out in built-up metropolitan areas and an assumption that most people live in such areas. The authors recommend protocols for the inclusion and consideration of geographical data in all research.

It is half a century since the white paper Better Services for the Mentally Handicapped was published in 1971. It is timely to reflect on how policy has changed in that time. Many readers will know that Better Services (Cmnd 4683) was a response to the scandal of Ely Hospital in Cardiff, where a whistleblower revealed the widespread abuse there to the News of the World newspaper. Governments then could be shamed into action in ways that have the whiff of a bygone era. It is a modest-looking publication, A5 in size, and no illustrations other than statistical tables.

Its publication is remembered as the beginning of the end for long-stay hospitals as the preferred form of care for people with learning disabilities. It did not commit to their demise, but it did state that “mentally handicapped children and adults should not be segregated unnecessarily from other people of similar age, nor from the general life of the local community” (paragraph 40(ii)). Its main prescriptions were for accommodation to be provided in the community, for training centres to be set up and for local authorities, not the NHS, to be the lead agencies. Of course, these ideas are outmoded.

We now regard training centres as yet another way of segregating people, and the community units were mainly hostels housing 20 or more people. But it had some merits. It acknowledged “present services… are a far cry from our current ideals” (paragraph 193) and was a thorough attempt to document what was needed to fill the gaps in provision. Hence table 5 gave a comparison of what was being provided with what was required. For example, in 1969, there were 4,300 residential care places, and it was reckoned that 29,400 were needed. There was a timetable for meeting those needs and cost estimates – what we might now call targets.

Inevitably, the targets were missed but they did set in train a major expansion of local authority residential and daytime provision to the extent that, by the 1980s, almost every council had such facilities. And, gradually, the hospitals did begin to wind down.

Valuing People: a new dawn

Its successor white paper, Valuing People, came out in 2001 – it is now its 20th anniversary. In contrast to Better Services, this white paper was prompted not by scandal but (I’m guessing here) by a group of advocates successfully lobbying a new minister, John Hutton, to make his name by sponsoring a strategy for learning disability.

It felt at the time like a new dawn. It was the first policy to be co-produced with self-advocates and carers, had an easy-read version and could not look more different from Better Services: smiling people on the front cover, large print, its principles – rights, independence, choice, inclusion loudly trumpeted. And yet… although its principles stand out (you can’t miss them) its aims were far less prescriptive than those in its earlier counterpart. It is surprisingly devoid of statistics. There are few targets and those that are there seem vaguely
worded and hard to measure.

The most concrete commitment was to close NHS long-stay hospitals by 2004. In fact, that took until 2010, and some would say it has still not been fully achieved (see Impossible to improve, spring 2021). It introduced partnership boards, funded advocacy and self-advocacy – for a time. Perhaps its most lasting legacy, boosted by a revamp in 2009 with Valuing People Now, was the dismantling of the hostels and day centres set up by its predecessor in favour of community inclusion. Is it a measure of its failure that the proportion of people in paid work has fallen in the 21st century to a shameful 6%, despite employment being one of its main aspirations?

England’s policy vacuum

And what of policy now? Try googling “learning disability policy England” and what comes up is the NHS Learning Disability and Autism programme – a follow up to Transforming Care.

Given that one of the major commitments in 1971 was to place local authorities in the driving seat, it seems extraordinary that the only relic of learning disability policy since Valuing People lapsed resides in the NHS. Don’t get me wrong. The pandemic has shown how important it is to get healthcare right and there is a long way to go. But learning disability is not an illness, and people with learning disabilities need a lot more than healthcare to achieve good lives. In contrast, Wales has a five-year learning disability strategy running until 2024 with three priorities – health and wellbeing, employment and education (www.ldw.org.uk/about-us/strategic-plan). Scotland has The Keys to Life strategy,
launched in 2013, reviewed and revamped since (https://keystolife.info).

Now, I am old enough to know a policy does not guarantee change. But, without one, where are the reference points, the drive, the ambition? It is time to push the English government
to put this right – and commit to a learning disability policy fit for the mid 21st century.

Jen Blackwell is a dancer on a mission. But her journey has been far from straightforward.

Jen, 39, happens to have Down syndrome. She is the founder, director and queen of the charity DanceSyndrome. At the age of 21, Jen threw down the challenge to her parents and society: “I live for dance. I have the right to a life of my choosing. My future lies in dance.” Dance courses through Jen’s veins, oozes from her pores, impacts every aspect of life. She is determined to share the fun, the joy, the happiness and the resultant wellbeing of mind, body and soul. And to travel the world with her dance. How to achieve?

Direct payments have been pivotal in achieving this dream. Personalisation has long been with us, with policy strategies aiming to put people at the centre of decisions about their lives. Jen has to be immersed in dance. Dance is fundamental to meeting her needs. Over the years, she has become more able to understand and express what is key to her wellbeing. This includes leadership, participation, dance she can choose to embrace – including up-tempo street as well as aesthetic contemporary and ballet – creating and performing choreography, and working alongside other dancers with and without learning disabilities.

Being listened to and believed in, having advocates fight her corner and exploring opportunities with appropriate support have all been part of the journey. Perhaps most importantly, her body language has been given a voice. This is personalisation. Positive, vibrant, thriving and living a life of her choosing – these words aren’t always associated with people with learning disabilities. Neither is feeling on top of the world nor being almost permanently wreathed in smiles. But this is Jen’s life where learning disability, dance, leadership and inclusion belong side by side every minute of every day. The busier Jen is, the happier, more fulfilled and more confident she is. She loves being in demand, in control of her life and living her dream. Jen is sought out as a performer and workshop leader, and contributes to conferences, training, university seminars and webinars.

She has won numerous awards. Most recently, she was made a judge for the Shaw Trust Disability Power 100, having been a winner in the previous three years. Thanks to reasonable adjustments, Jen has been totally engaged, feeling valued and respected and able to express her opinions, and also felt listened to. With her direct payments used flexibly and creatively, Jen’s assessed needs are met and she can choose which carers she works with. She has to dance at least twice a day. Jen needs dedicated, empathetic support in all areas of her life and real, meaningful interaction with others through dance. She needs a place she calls home where she is secure and her personality can shine through. As a housing association tenant, she holds the keys to her own front door. She is a valued member of her community, coming and going as her busy life demands. Her hobbies include playing her flute with her “flute monkey mate” (skilled, dedicated flute support), playing in two musical groups and karate.

Life is never without challenges; there will always be

bumps in the road. When nothing seems to make sense or when Jen is behaving out of character, the duty lies with Jen’s carers and friends to determine, understand and unravel the cause. Jen is the best teacher we will ever have. We have learnt the problem isn’t Jen’s learning disability – that’s just a part of her makeup. If Jen was denied the opportunity to live her life through dance, this story would not exist. She would be just another statistic sitting in a day centre or isolated at home, bored, obese, lacking identity or purpose and inevitably becoming a significant drain on the public purse. Statistics suggest her life would be 20 years shorter than the lives of her non-disabled peers.

With the support of her parents, Jen set up DanceSyndrome in 2009, which became an inclusive dance charity led by dancers with learning disabilities in 2013. It has enhanced the lives of countless people. I am incredulous at Jen’s life. I am so proud of her focus, thrilled her passion is benefiting others and delighted she now has the joy of meaningful friendship.

Mixed ability sports enables disabled players, along with others experiencing barriers to taking part, to be included as equal members in community sport clubs. International Mixed Ability Sports (IMAS) works with national and international partners across sports, education, advocacy and healthcare to promote social inclusion and break down prejudices, barriers and preconceptions

We carry out activities and projects for the benefit of the community. Our main beneficiaries are:
● Adults and children with learning and/ or physical disabilities and those on the autism spectrum
● Adults who have retired from or no longer participate in regular physical activities
● People facing a wide range of barriers to participation in sport
● Sporting groups who want to increase participation from disabled people
● Coaches, trainers, teachers and volunteer facilitators who are interested in promoting social inclusion
● Sports clubs seeking to become more inclusive and/or build their memberships.

The IMAS trainers who run our education sessions, co-write our presentations and coordinate our activities have all personally experienced barriers to taking part in sport. Many of our team members live with a learning disability and enjoy being able to share their journey with other people who face similar barriers or want to become a champion to drive change in grassroots sports to improve inclusion.

The beginnings

The IMAS journey started with Anthony Brooke, who has cerebral palsy and learning difficulties, who was unhappy with the alternative rugby provision available to him. He was prevented from playing the full contact version of rugby he loved because of perceived risks. “They would not let me play, they thought I would get hurt,” he says. “Of course we get hurt – it’s part of the game.” Through an educational class, he was able to establish the Bumble Bees, England’s first mixed ability rugby team.

As the team gained more players with and without disabilities, the Bumble Bees’ managers realised that there was a demand for mixed ability sport and IMAS was set up and registered as a community interest company in 2014. IMAS began to build networks across the rugby world and attracted the attention of England Rugby. The formation of the Bumble Bees rugby team, combined with the passion of IMAS founders Martino Corazza and Mark Goodwin, created the ideal conditions for the world’s first International Mixed Ability Rugby Tournament, which was held in 2015 in Yorkshire.

The event was attended by more than 500 players with and without disabilities from 12 countries and was endorsed by the UK sports minister. Following the success of this tournament and the next one, held in 2017 in Vitoria-Gasteiz in Spain, a third event is planned to take place in 2022 in Cork in Ireland. We would love to tell you more but, as they say, what happens on a mixed ability rugby tour stays on a mixed ability rugby tour…

Same rules

Mixed ability sports follow the same rules and regulations as mainstream sports with no adaptations and only minor adjustments to take into account individual participant needs. Mixed ability is not a disability sports provision – it is open to everyone. It is an important offer for any club as having everyone play together promotes inclusion. It allows friends and family to play in the same team with no one segregated into a disability-specific team or graded into a Paralympic classification.

Our IMAS trainers have shared some of their views on IMAS and mixed ability sports:

“IMAS turns things upside down, showing how people can learn lessons from those with intellectual and physical disabilities.” Dr Mark Purvis

“It gives us a place to tell our stories and listen to others.” Rupert Spode

“It’s a place where our voices can be heard.” Mason Faulkner

“We are a group of experts by experience.” Rachel Barrett

“We get our message out through presentations and on the pitch.” Paul (the Maul) Whyat

More sports join in

There are now many mixed ability rugby teams across the UK and the world, and IMAS has expanded beyond rugby into other sports including boxing, cricket, swimming, rowing and football. We continue to look for new opportunities in new countries and sports to enable greater participation for everyone worldwide.

Helen Howes, a mixed ability swimming coach who has multiple sclerosis, is a great example of a champion for inclusion. She came along to one of our educational sessions, asked whether IMAS had any mixed ability swimming sessions and, when she found out there were none, set up sessions in her local pool. These were going from strength to strength before the pandemic hit. Howes has some great stories to tell of the progress her class has made, with one participant moving from having very little confidence and staying at the edge of the pool in the shallow end to now being able to swim a length. These amazing achievements are possible through mixed ability sports.

The pandemic has had a major impact on sports and physical activity across the UK, with lockdowns forcing many clubs to stop training, change their rules to limit contact and reduce the social interaction between players as much as possible. This has meant that, for the past 18 months, our community clubs have been hit hard and many may struggle to survive. IMAS wants to support these clubs to “build back fairer” and is working with clubs to provide mixed ability training, continued support and mixed ability accreditation. This should help them to reach out into their communities and increase their membership by looking beyond their usual area and extend their arms around people who have faced barriers to participation for any reason. These will include players with learning disabilities who, perhaps, have been shielding for a long time or are feeling concerned and scared about returning to life as we knew it.

While physical activity and social contact have been difficult to continue through some parts of the pandemic, our IMAS trainers have shared their stories of how lockdowns affected them and what they did to try to improve their situation. The videos can be found on our the IMAS YouTube channel at https://tinyurl.com/4kvzv77z

One of these stories highlights Tom Beattie, who was really struggling without his regular physical activity and social contact through rugby. He was introduced to mixed ability when he moved to Yorkshire and was delighted to be able to play rugby with his brother, which had never been possible in his previous clubs because his brother did not have a disability so was kept separated from him. Without his rugby, Beattie found both his mental and physical health were suffering so he had to find new ways to keep active. These included walking along the canal near his home, taking part in online exercise activities and continuing his classes with IMAS via the internet throughout multiple lockdowns.

Rupert Spode, another IMAS trainer, also found the multiple lockdowns hard and was pleased he was able to keep up to date with his friends at IMAS through class calls every Wednesday. He also took up photography and cooking to keep busy while he could not be active outside with his friends and team mates. He is said to cook up a fantastic sausage roll.

Katrina Dobson, one of our first female IMAS trainers, found ways to cope during lockdown by following Joe Wicks’ daily workouts, going out on her own for walks and keeping in touch with friends and family by video calls.

Back and active

This summer, many clubs in the UK are planning to return to activity. At IMAS, we are passionate about a return that is inclusive and are encouraging clubs to build back fairer by looking at ways to incorporate mixed ability teams. Sport and physical activity provide a great number of physical and mental health benefits and IMAS strongly believes everyone should have the opportunity to be a full member of their local club.

Many of us at IMAS have found it hard when we have been unable to keep active, so we understand how important it is for anyone who wants to take part to be included. We are always open to working with like-minded partners to grow mixed ability sports and would love them and anyone interested in joining or helping to start a mixed ability team to get in touch via our website or social media channels.

The mixed ability manifesto involves: health and happiness; equal participation; inclusion and equality; rules and regulations; membership and belonging; and breaking down barriers. Read about it and sign it at www.mixedabilitysports.org/mixed-ability-manifesto.

Contact IMAS:
www.mixedabilitysports.org
Twitter: @IMAS_sport4all
Facebook: @MixedAbilitySports
Instagram: imas_sport4al

Kelly Heathcote is business development manager at IMAS

It is 10 years since human rights abuses at Winterbourne View were exposed in a BBC Panorama documentary, the NHS England Transforming Care Programme that committed to deliver homes not hospitals has been and gone and a second Panorama exposed further human rights abuses at Whorlton Hall in 2019. Has anything really changed?

For too many people still living in inpatient units and their families, the answer to this question is no. According to NHS data published in October 2020, more than 2,000 people with a learning disability and/or autism were still living in inpatient units, with the number of children and young people (under 18) doubling since March 2015. Over these years, Community Living has spoken with many families with firsthand experience of having loved ones with a learning disability in such inpatient units. They report that one of the most significant barriers to hospital discharge is that the right support has still not been created, and that commissioners often struggle to find solutions for people who need bespoke, person-centred care.

Not having the right housing and support from the outset too often results in predictable and preventable readmissions. However, families have told us that, when professionals listen to people and to their families, people can – and do – live safe and happy lives in the community.

Getting the right support

One such parent is Nicola Bartzis, who explains how the right support was built for her son. George was admitted to mental health inpatient units twice, both times because of unmet needs and inadequate provision rather than mental illness. When he was discharged for the first time, he returned to his special school then moved to a residential setting run by the same provider. He had to share with three other young people who also had significant support needs.

It quickly became clear that the provision was not right for him. His behaviour became distressed and his epileptic seizures increased. More and more concerned for her son’s health and wellbeing, Nicola began to research if he could be supported in his own home and found herself jumping through hoop after hoop. She first had to apply to become George’s financial deputy so she could set up his tenancy. It then took several years to find and set up his home, going through social housing criteria and bidding processes, and fighting for him to `moved up the waiting list.

In the meantime, George’s situation and health continued to deteriorate. As his distress increased, he was subjected to increasing restrictive practices. “They restricted his environment. Everything he broke would just get taken away. It just became more and more restrictive,” says Nicola. “The doors became locked. At one point, he was in the downstairs toilet and that door was locked… [Staff] would be three locked doors away from George. So, if he had a seizure, they would be completely unaware. Things like that were happening on an almost daily basis.” Then, out of the blue, George was given notice to leave the care home before Nicola had been able to secure the right housing to meet his needs or find a new care provider. It became a race against time.

Thankfully, she was able to organise George’s tenancy in a two-bedroom housing association property, a new build that could be adapted to his needs from scratch and only three miles from the family house. The next hurdle was finding a suitable care provider. The social worker stepped in and reassured Nicola that the provider she had identified was very experienced and had been working in care for a long time.

However, it immediately became clear that they lacked the skills George so clearly needed. They were out of their depth and did not understand autism or how behaviour communicates unmet need.

Emergency admission

One day, shockingly, while Nicola and George were out on a trip, the care team just walked out. The regional manager turned up and insisted George needed to be sectioned. A mental health assessment was carried out and, when the ambulance that had been called was re-routed to another call, Nicola was left with no option other than to take him to hospital herself to avoid the police transporting him there.

This was a traumatic experience she will live with for the rest of her life: “It was just horrific to have to do that and to leave him there… with people he didn’t know in a setting I knew wasn’t right for him.” In the inpatient unit, it came to light that George’s extreme distress had been caused by a physical condition – gallstones – a known side-effect of the epilepsy medication he was taking.

A different approach

As George’s discharge from hospital was being planned, Nicola once again struggled to find a new provider that could support his needs and with the values she was looking for. Sugarman Healthcare was suggested by a helpful commissioner. Nicola found herself having to persuade the senior leadership in the organisation to go out on a limb. Initially, they were not keen, but the local house manager was willing to think out of the box and beyond the company’s usual care provision.

The challenge then became how to support George to recover from the restrictive practices to which he had been subjected in the inpatient units. The inpatient hospital’s multidisciplinary team were insisting that George’s community care should replicate their medical model approach. His responsible clinician insisted on 5:1 support: three staff inside and two in a car outside. Nicola challenged this: “What would these five people do during an incident? How would they help?” Undeterred, Nicola worked hard with the new care provider to persuade the hospital there was a better way. Speaking with them directly made a huge difference. Nicola could talk openly with the care manager about how different George was from how the clinical team described him. She explained how he was presenting in the hospital and why, including the traumatic impact of the restraint and seclusion.

The manager listened and George’s life is now very different. He is in his own home. He has 3:1 support and waking night support. Nicola explains how she and George’s provider work together. “It’s having that provider that will go that extra mile, that will listen to what I’m saying to them… The provider knows my values so they know who I would or wouldn’t accept,” she says. “But, generally, I don’t have a say in who they employ. And I think that’s probably right for me. It’s a bit of a balancing act. They are an organisation – they are responsible for the hiring and firing. And I want it to stay that way.”

Nicola explains how important getting the balance right is to George’s care being sustainable. She recognises her priority is George but that her provider needs to follow laws and regulations and satisfy the Care Quality Commission. “My focus is completely on George and his wellbeing,” she says. “That’s one of the reasons why I went for a provider, rather than direct payments and employing people myself directly. I don’t want to be part of managing that team because, if you are one step away from them, that means when things are going wrong, it’s a lot easier.”

Nicola explains that having a care team with the right values has been fundamental to the success of George’s care. “Some of it can be taught, like awareness of what he might be thinking or something that’s more George specific. But it’s that basic level of seeing them as human beings and having that empathy, and wanting to them to have a good life. That’s something that you either have or you don’t have.” She explains how they have had life changing effects: “If you meet his needs, life is so much easier for him and for everybody supporting him… Let him do what he wants to do in his own home – because he has those rights as a citizen. And just support him to do what he wants to do.” Now he has the right support, George feels safe and happy. As Nicola says: “You can see it in his body language. He’s relaxed. He’s still got left-over trauma, which you have to deal with, but the staff are really understanding.”

For Nicola, the right support for George was encapsulated on a day trip with his care team: “There’s a support worker who’s been with him from day one – the only one who has been with him for the whole two and a half years. “George has got a favourite pair of trousers that he wants to wear all the time. They have been washed so many times the elastic’s gone… George was so desperate to wear these trousers. And the staff member just was holding his trousers up at the back. Those are the values that you can’t pay for. They just do it without thinking.

Now George is settled, Nicola has been able to go back to work. She is not spending all her time and energy fighting the system and this has enabled her to help others. She is not only a parent carer but also an advocate, a care treatment review expert by experience and a member of NHS England’s learning disability and autism taskforce’s independent oversight board. She sits on her local learning disability partnership board. Developing the right support for George has brought benefits for his care providers too. The manager who helped him have a home not a hospital is now head of complex care at Sugarman and George’s care has become the blueprint for care packages for people with similar needs.

Nicola’s final thought will resonate with many: “I feel incredibly lucky that George is just up the road from me… But this should be the norm. My life’s work has been getting George the right support in the right place. But it shouldn’t be. Because there are so many people who are in the system, are paid by the system, to do that work. “All these fat cats we see in the press are being paid so much money, but the people who do the real work are the parents.”

Perhaps the single biggest change for us during Covid has been the move to online. At the beginning of the pandemic, everyone said they had never used Zoom or Teams, and several people did not own a smartphone, tablet or computer. The how-to, easy-read guides on technology that members created and Learning Disability England (LDE) shared during those early days proved to be very valuable. Despite initial worries, everyone has embraced this new digital world. As Pat Charlesworth commented: “I don’t know what I would have done without Zoom – I’d have gone mad.”

Self-advocacy and grassroots organisations quickly set up activities ranging from dance classes, quizzes and craft groups to meetings and support networks. One example was the Creating Connections project between SeeAbility and LDE. Others were My Life My Choice’s Phone Buddies and Computer Buddies and their online festival – Ben McCay oversaw much of that work. Everyone agreed that digital was now an important part of their lives and would continue after Covid (see box).

Vulnerable and ‘other’

The group talked about how the “vulnerable” description used about people with learning disabilities during the pandemic made them feel. Yes, lots of us had to shield,” said Chelsea Lovell. “But that doesn’t mean we weren’t contributing to our community. Why weren’t those stories being told?” Charlesworth added: “It’s as though the media and politicians were determined to see us as different. To portray us as more needy than everyone else. Everyone is vulnerable in some way. This determination to make us ‘other’ is very dangerous. It blocks inclusion.”

The group talked about the different ways they had contributed through the pandemic. This included organising groups such as a film club and art classes, a campaign to persuade local NHS managers to prioritise people with learning disabilities for vaccination, rolling out mental health training and advising on identifying local needs and reasonable adjustments around vaccination, including supporting people terrified of needles.

Accessible information in one place

Accessible information on the everchanging lockdown rules was vital and was not being produced by government. LDE self-advocates led the creation of many resources in partnership with Photo Symbols, Books Beyond Words (pictured is an image from a booklet on coronavirus vaccination), Mencap and others. Within the first few weeks of the pandemic, LDE had developed an open access Coronavirus Hub to share them.

This also included work by NWTDT Pathways and their Signalong sessions, and Lewisham People First’s weekly music sessions. As LDE has often observed, people who don’t use speech to communicate can be left out. We hope lessons have been learnt by government departments as, ultimately, they have a statutory duty to make sure information is accessible to everyone.

The right to stay alive

LDE joined voices with over 70 other disabled people’s organisations and allies early in the pandemic in an open letter supporting a statement about the rights of disabled people during Covid 19. Members were all concerned about media coverage and letters from GPs about do not attempt resuscitation (DNAR) notices. LDE ran a significant DNAR campaign and joined forces with Turning Point to develop a DNAR toolkit for people with learning disabilities and the people who support them.

The LDE representative body co-chairs said at the time: “Decisions on people’s treatment being made based on them having a learning disability are never OK – even one is too many. “We are pleased to hear there are examples of people and their supporters being positively involved but we want to see all lives valued and people not fearful of others writing them off.” LDE worked in partnership with the British Institute for Human Rights to run a number of workshops, which led to two BIHR reports.

We need action now to stop DNARs being used wrongly once and for all. That’s why we are working with the BIHR to do a human rights analysis of the experiences of people with learning disabilities, their families and paid supporters. A Learning Disabilities Mortality Review (LeDeR) report and policy, Learning from Lives and Deaths, was published in March 2021. The way forward includes ensuring changes are made to the system – outcomes have been set to reduce avoidable death and to include individuals and families – which is reassuring. It feels like a positive step in the right direction.

Links to the initiatives highlighted in this article are included in our online issue

Removing people with learning disabilities and/or autism from mental health legislation has been a policy goal for organisations campaigning with and for these groups since at least the mid 20th century. This is now being proposed in a government white paper, Reforming the Mental Health Act 1983. There are, broadly speaking, two main reasons for campaign bodies to support the move.

First is a sense that, properly speaking, mental health legislation is not about this population; the “mental disorder” defined in section 1 of the Mental Health Act 1983 (MHA) refers to people with “mental illnesses” such as schizophrenia, bipolar and depression, not lifelong conditions such as learning disability and autism. It is therefore wrong to apply mental health legislation to people who are disabled and not experiencing mental health issues.

The second concern is that too many people with learning disabilities and/or autism are still incarcerated in inappropriate hospital “care” – assessment and treatment units (ATUs) such as Winterbourne View and Whorlton Hall.

Today, many of these people are detained under the MHA, so it is natural to assume that if people with learning disabilities and/or autism are removed from the scope of the MHA, they might be free to leave. On the first question – whether mental health legislation does or should apply – it is important to note that the legislation itself explicitly includes “disability of the mind” in its scope (section 1(2), MHA). The intent was clearly to include longer-term disabilities as well as intermittent conditions.

In addition, the Mental Capacity Act 2005 (MCA) frameworks for detention use exactly the same term and definition of “mental disorder” to define the populations who can lawfully be detained under the Deprivation of Liberty Safeguards (DoLS) and the Liberty Protection Safeguards (LPS). The belief that the MHA should not apply to people with long-term developmental disabilities (or, similarly, people with brain injury or dementia) is cultural, not legal.

I argue in a book I am writing that this has deep historical roots in how these different populations were parsed and treated in the late 19th and 20th century, with one group deemed curable and the other incurable but perhaps trainable. Arguably, removing some populations from the scope of the MHA because it is associated with stigma is simply reinforcing that stigma for others without addressing the core problem.

On the second assumption, I suspect many will argue that removing people with learning disabilities and autism from the scope of the MHA will mean they are less likely to be detained in hospital settings such as ATUs. While I absolutely support the intention here, I believe the opposite outcome might result. Odd as it might sound, removing people from the scope of the MHA will not actually prevent them from being detained in hospitals and ATUs, and might even make it easier to detain them where they or their families object. This is because – for complicated reasons that I will try my best to explain shortly – when you take people out of the scope of the MHA, they become “eligible” for detention under the MCA instead. The DoLS are a framework for detention within the MCA that apply in hospitals and care homes.

Inadequate new safeguards

Given the acknowledged inadequacy of these safeguards, next year the DoLS will be replaced by a new framework, the LPS. Unfortunately, the LPS are full of problems as well. So although people with learning disabilities and autism might no longer be detainable under the MHA, they could very well find themselves detained in the same places, and subject to similarly restrictive regimes and treatment (without consent) under the MCA instead. If they are detained under the MCA, they and their families will have fewer opportunities to object to or challenge their detention and treatment.

The interface between the MHA and the MCA is so horribly complicated that a senior judge described it as like putting your head in a washing machine and spin dryer. Another judge observed that people who find themselves entangled in this legal interface will have an incredibly hard time understanding and exercising their rights. To put it as simply as possible, the MCA is basically a legal overflow system for populations who have for various reasons been ousted from the MHA. This includes some people with learning disabilities (and autism, if this proposal is adopted), but it can also be true for other groups, for example, people with dementia or those with brain injuries. If a clinician deems it as being in a person’s best interests to be in hospital for whatever reason and if the person cannot consent to this, the MCA DoLS can be used to detain them.

Another example is that a person who has been detained under the MHA then discharged by a mental health tribunal because they do not meet the MHA’s criteria for detention cannot then be re-detained under the MHA. However, it seems they can then become eligible for detention under the MCA DoLS instead. So the same person could then be detained again in the same place, just under a different law. It seems perverse that you could set up a law precisely to discharge people from detention when they do not meet certain criteria, only for them to be detained again under a different law.

To summarise, the smaller you make the reach of the MHA – by raising risk thresholds, by removing people with learning disabilities and/or autism from its scope altogether – the more people will overflow into the MCA’s provisions for detention. For some people, this sounds acceptable. I have heard it argued that since it self-evidently would not be in a person’s best interests for them to be detained in hospital, the MCA will protect them against that possibility.

Best interests not the best option

The trouble is that the concept of best interests is inherently vague and subjective. I doubt there is a doctor in the country who would detain a person in hospital where they believed it was not in their ultimate best interests, albeit they might see it as the least bad option for that person from the available options.

Let’s take a hypothetical example to work this through. “Ella Brown” has autism and her care in the community is breaking down. She is considered by clinicians to pose a risk to herself as well as others and they want to bring her into hospital for assessment and treatment. At present, they could make an application for detention for assessment under section 2 of the MHA. She would not be eligible for detention under the MCA DoLS (or the LPS as presently drafted) because she is both within the scope of the MHA and she is objecting. However, if the white paper’s proposal to remove people with autism from the powers of detention of the MHA were adopted, then she would no longer be within the scope of the MHA; no application could be made under section 2 or, if it were made, it could not be granted.

So, even though Brown is objecting, she is now eligible for detention under the MCA – the DoLS at present and the LPS as of next year.

Less scrutiny

Detention under the MCA potentially means that fewer independent professionals will be scrutinising admissions and the frequency of reviews. Whereas under the MHA a tribunal will automatically be convened for Brown after six months to review her detention, the odds of her having a court review of detention under the DoLS are 1% and projected (by the government) to fall to 0.5% under the LPS.

She would no longer be eligible for free aftercare. There would be no statutory discharge planning processes of the kind proposed in the MHA white paper. There are good reasons to believe she and her family might have a harder time preventing her admission or getting her out under the MCA than the MHA.

Question the loss of protection

So, my point is this – taking people with learning disabilities and autism out of the scope of the MHA will not stop them from being detained in ATUs unless we also fix the MCA. We could argue for an absolute prohibition on hospital detention for this population or a requirement for court approval for this. We could argue that the MCA should carry safeguards equivalent to those in the MHA. This would entail a major review of the LPS, which were passed by parliament only a couple of years ago. I doubt the government would want to revisit that turbulent exercise any time soon, but it is worth asking ourselves why someone should have less protection under the MCA for detention in the same kind of setting.

•  Department of Health and Social Care (2021) Reforming the Mental Health Act. https://tinyurl.com/4wtx9sdd

Lucy Series is Wellcome senior research fellow and lecturer in law, School of Law and Politics, Cardiff University. Follow her blog

The Small Places at https://thesmallplaces. Seán Kelly wordpress.com/author/lucyseries/