What is life like for people with learning disabilities in Japan and how do they experience ‘belonging’? A visit allowed people to swap stories and find out, says Jan Sunman

Three jet-lagged academics, a self-advocate and a family carer sped bleary-eyed down a highway from Kansai airport into Osaka. Our impressions on arriving in Japan were of a densely populated country, every scrap of land used and small flats cheek by jowl with businesses and industry.

We observed how unfailingly polite and helpful Japanese people were. The young man deployed to support our self-advocate colleague as part of the airport’s disability assistance programme looked after us all, guiding us and helping us buy bus tickets. Our visit was part of a research project to explore experiences of “belonging” for people with le arning disabilities and their families in the UK and Japan, led by the Open University and funded by the Economic and Social Research Council.

It came about after Hiromi Moriguchi, a researcher at Tenri University, gave a presentation on self-advocacy in Japan at the Open University’s 2018 Social History of Learning Disability Conference. A few weeks later, the Economic and Social Research Council called for projects to support the establishment of UK/Japan research networks.

Our project addressed three questions:

● What does “belonging” mean to people with learning disabilities and their families in Japan and the UK?

● How can family and self-advocates work together in the two countries?

● How are services organised in both countries, and what good practice can be shared?

We wanted to learn how cultural differences affected these issues. Our Japanese colleagues were keen to explore inclusive research as there is no tradition of involving people with learning disabilities as co-researchers in Japan, so we set up inclusive teams of academics, family advocates and self-advocates in both countries within this project.

The UK team were: Liz Tilley, an Open University researcher; Sara Ryan, a parent activist and University of Oxford academic; myself, a parent activist from Oxfordshire Family Support Network; Ian Davies, founder of Northamptonshire People First and the National Forum of People with Learning Disabilities veteran, who has a learning disability; independent researcher Jan Walmsley; and Liz Ellis, a researcher at the University of Highlands and Islands.

Moriguchi’s team included: Japanese social policy expert Hiromi Tanaka; Chie Kasahara, associate professor at the University of Sophia in Tokyo; Marin Fujino, a PhD student whose brother has learning disabilities; and Azusa Omori and her 18-year-old son, Shun, who has a learning disability, who are together campaigning to improve self-advocacy and further education.

Each exchange lasted five days and was built around visits to organisations and services, research presentations, workshops – and lots of eating and drinking. The UK visit, the first, prompted Japanese colleagues to reflect upon the complexity of translating the term “belonging” into Japanese and difficulties in building capacity for self-advocacy and inclusive research in Japan.

This exchange indicated some differences between the two countries that we were keen to explore when we visited Japan, notably employment rates for people with learning disabilities and how welfare is organised. We had a full agenda in Japan. We visited three universities, a “work centre” (that provided training and some work), a group home, a social club for people with learning disabilities and their families and day services, including one in a rural area. We met people with learning disabilities, their support workers and family carers. We gave presentations at seminars and workshops with our Japanese colleagues. Our working relationships were cemented during conversations over wonderful meals and visits to shrines.

As a family carer, I was keen to learn whether Japanese social policy has lessons for us. How do people’s daily lives compare with ours? Do people with learning disabilities and their families have a strong voice in developing social and healthcare policy in Japan? How does Japan support the human rights of disabled people?

A lot in common

As family carers, we have a great deal in common. We are united by the same fears about the future of loved ones when we pass away. I met an older carer who had battled to get her son moved from a group home far away to one closer to her home. She did this with the support of a group that met in Tokyo, comprising social care workers, advocates and family carers. Younger families I met were beginning to press for greater inclusion in education and much more personalised support, although there was still reticence about advocacy. Culturally, pressing for the rights of the individual went against the grain.

I saw inspirational work by family members, such as Azusa Omori’s i-LDK Super-College, set up to help young people gain life skills, which plans to train businesses about diversity, deploying their young self-advocates. Sibling advocacy was gaining momentum too, with people using social media to share stories and support. Arts-based initiatives such as Tanpopo No Ye and The Good Job! Centre Kashiba provided high-quality, creative work opportunities.

I met a representative of PandA-J, an organisation that provides information and training on human rights and abuse prevention to professionals and parents. Japanese families we met were shocked to learn about the human rights abuses of people with learning disabilities in secure assessment and treatment units (ATUs) and the effects of austerity on disabled people and their families in the UK.

Health inequalities exist in Japan as in the UK. Families shared similar concerns about the abuse of people with learning disabilities, particularly after the massacre of 19 disabled people at a specialist facility in 2016 (the 26-year-old perpetrator said afterwards that “it is better the disabled disappear”).

Stigmas and safety nets

Fujino had carried out research on the impact of having a disabled relative, and referred to the “family burden”, suggesting that there was still a stigma attached to being disabled. This concept of a burden harks back to attitudes in UK in 1980s. It felt uncomfortable to me. One impressive aspect of Japanese provision was that the government provides a safety net of financial and social care support (subject to eligibility) without the constant battles we have in the UK. There is an extensive network of day services and group homes in place, although Japan does not have a model of supported living.

Families had developed service provision and advocacy before the state stepped in. This struck me as a similar path to the UK’s, although self-advocacy has yet to gain momentum in Japan. In contrast, we are witnessing state supported services being rolled back in the UK, with some advocacy groups and families stepping into the gaps.

I returned from Japan believing more than ever that we need to challenge the destructive impact of austerity on the lives of people with learning disabilities and their families. The UK benefits system should exercise the same level of flexibility afforded in Japan, allowing people to retain benefits while being paid to gain skills. We can learn to be ambitious about creating jobs and partnerships with businesses and the public sector. We can save money and stress on endless reassessments when we all know learning disability is not something that is cured. And we need to value people again.

Highlights for me included watching Shun Omori gain confidence from meeting Ian Davies and being a member of the team. His mother said this research experience had encouraged him to start making more choices about his life. Telling his story about his work at the i-LDK Super College and showing us how to travel around Japan using Google maps on his smartphone had helped Shun to feel like he geniunely “belonged” in our team. One of the most valuable parts of the project was the power of being able to  tell your own story. Davies shared his  life story with the theme of belonging and not belonging to several audiences, including 60 trainee social workers. Many students said that hearing this enabled them to understand the meaning of belonging for the first time. Other people with learning disabilities in Japan have since requested that they too be supported to tell their life story, inspired by his account.

Our Anglo-Japanese partnership is looking to build on the exchange visits through further work on life stories. Japanese colleagues are hoping to start work on this for the first time. In the UK, life stories have been collected since the 1960s, but what is less well established is their use within services. As a result of the impact of telling Davies’s life story in Japan, we want to find ways to embed them as a foundation for genuine personalisation.

We feel privileged to have had this opportunity to gain an insight into Japanese advocacy and social policy. It has given us new ways to look at what’s going on at home. Altogether, it was an immensely rich learning experience.

Jan Sunman is a family carer and advocate who is passionate about rights and services for people with learning disabilities and families. Additional reporting by Liz Tilley and Jan Walmsley

Write to Community Living at simonjarrett1@outlook.com. Note: all letters may be edited

Supported living: the next Covid-19 scandal after care homes?

I am the chief executive of a London-based charity that provides support services to people with learning disabilities in Westminster and neighbouring boroughs. I have raised serious concerns about the lack of Covid-19 testing for people with learning disabilities and the staff who support them. I believe that this is discriminatory and resulting in preventable deaths.

More than 2,400 excess deaths of people with learning disabilities and autism were reported between April and May. I believe this is partly due to a lack of testing in learning disability services. It has been our experience that when trying to access testing, we consistently face bureaucracy and a lack of understanding. People with learning disabilities are not viewed as having the same level of vulnerability as older people. As a result, a whole cohort of the community is being discriminated against.

This is of huge concern given the well known health inequalities in the learning disability and autism population, with higher rates of diabetes, obesity, heart disease and other conditions. There are some extremely clinically vulnerable people with profound and multiple learning disabilities. Then there are others who find distancing and hand hygiene rules hard to follow.

Despite all this, we have been repeatedly informed that our service users do not meet the criteria for testing. This may be in part because of confusion and ignorance over their accommodation. People living in small, shared supported living services or their own flats do not qualify for testing in the same way as those in registered care homes. People living in supported housing are therefore being denied accessed to testing. This is grossly unfair, discriminatory and exceptionally dangerous. For all these reasons, supported living and domiciliary care for people with learning disabilities will be the next scandal after care homes.

We have also been asked by the NHS and others to admit people who have not been tested. Despite our considerable efforts to protect vulnerable tenants and prevent any outbreak arising from the admission of untested people, we have been largely unsuccessful in obtaining tests. Testing is needed in all care settings, including supported living, as a prophylactic measure.

We have continually met barriers, bureaucracy and bewilderment. It is frankly neglectful that, without urgent action, we will be lamenting the deaths of more people with learning disabilities and of those who support them.

Gabby Machell

Chief executive, Westminster Society for People with Learning Disabilities, London

● Care in the crisis, page 10

Jean Vanier: a great betrayal

I first heard of Jean Vanier when I was  a teenager and he inspired me to join  a L’Arche community for a while.  After university, I returned to the neighbourhood and remained a  close friend.

Over time, my admiration for Vanier was tempered by a growing awareness  of his fallibilities. Despite encouraging others to live with adults with learning disabilities, he lived alone. He was homophobic. And his view that all L’Arche members should channel their sexuality into celebration because people with learning disabilities could not have sexual relationships was downright weird.

Nonetheless, I believed Vanier to be a good and humble man, and continued to value L’Arche. I was pleased to see his work being recognised in the UK in recent years, and mourned his death last year. When the news story broke that Vanier, alongside his co-founder Père Thomas, had been engaged in abusive relationships
with female assistants, I was sadly not that surprised. After #metoo and other scandals involving charismatic leaders, the story was all too familiar.

I was also angry that the man who had lied to the Père Thomas inquiry and spoken so beautifully about the dignity and respect of human beings was all the time an abuser himself. And I was devastated for my friends in L’Arche for whom this was such a great betrayal.

Which is why L’Arche’s response  has been extraordinary. Most organisations cover up wrongdoings by their founders. L’Arche chose instead to undertake the painful task of open and honest investigation that respected and elevated the victims.

After that, communities were provided with a helpful framework to share the news and support each other (movingly described by Dr Irene Tuffrey-Wijne in her blog: http://www.tuffrey-wijne. com/?p=767). It is an exemplar of good practice, and worth learning from.

Was Vanier a good man who did bad things, or a bad one who did good things? I’m not sure.

What I am sure of is that L’Arche has shown in its worst moment that it is far, far greater than the founders who disgraced it. And I take comfort from that.

Virginia Moffatt

Oxford

● Accusing saints: when no one listens, page 22

After L’Arche founder Jean Vanier died, an inquiry found he had sexually abused six women. Could women with learning disabilities also have been victims? Noelle Blackman and Lynne Tooze report, and discuss why the odds are stacked against  vulnerable people who speak up

Allegations of sexual abuse against Jean Vanier, the charismatic founder of the L’Arche communities, emerged in February 2020, shortly after his death in 2019. They were made public following an independent investigation commissioned by the charity.

Vanier set up the first L’Arche community in 1964 in a small house in Trosly-Breuil in France. He invited two men who were living in institutions to move in. The community was a response to the plight of people with a learning disability institutionalised in France. He wrote books, was nominated for the Nobel Peace prize, received several awards and was admired by many. His vision was for people with a learning disability to be able to contribute to society and live equally alongside people without a learning disability, The investigation concerned mainly the relationship Jean Vanier had with his mentor and teacher Father Thomas Philippe, but also considered specific allegations against Vanier himself.

The news that then emerged – that Vanier sexually abused six women from 1970 to 2005 – is a real blow. It is similarly distressing to discover that Father Thomas Philippe was also known to have sexually abused women. At Respond, we were dismayed about what had happened and wanted to try to make sense of it. Sadly, however, we were not entirely shocked.

Respond is an organisation that offers therapy, advocacy and support to children, young people and adults with a learning disability, autism or both, who have experienced trauma. We work with people who have experienced abuse as well as those who abuse others. This helps us to understand that the world is not full of people who are wholly good and those who are wholly bad – everyone is capable of being both. It is unhelpful to hold such closed views about people, because it can lead to blind spots that are dangerous.

When we work with people who have sexually abused others, we take a lot of time understanding their life histories up to the point we meet them. We often find they have experienced a lot of trauma and may have been sexually abused by others.

Understanding the person in the context of their lived experience enables us to see them as a person first and foremost, to develop a therapeutic relationship with them and to hold a belief that they can change.

Power weakens others

Vanier was seen as a wholly good person, a saint – indeed, he was in line to be canonised. This would have made it difficult for people accept any concerns they might have felt, to discuss these with others or even to have been believed. It would also have made it extremely difficult for the people abused by him to make sense of what happened to them and to tell others.

The abuse was carried out through a relationship that had an extreme power imbalance. Vanier was a man of God and couched his abuse within a spiritual context. It was a complete abuse of his power and this disabled these able women. It may have been difficult for them even to conceptualise what was happening to them. In this context, it is easy to see why  the disabling effect of power would have been even stronger over women with learning disabilities.

We are very aware of the separation in our society between people with and without a learning disability. L’Arche is well known for its aim, within its communities, to create what it calls a “culture of shared lives between people with and without intellectual disabilities, from which… to build a more human society” (L’Arche International, 2020a). It seems difficult to understand why women with a learning disability were not included in the investigation, or at least why the concept that there could have been a risk of inappropriate sexual behaviour towards them was not addressed.

L’Arche’s initial comment regarding whether any disabled women were sexually abused by the founder was equivocal. Their statement says: “There is nothing in the investigation to suggest that Jean Vanier harmed people with disabilities” (L’Arche International, 2020b).

This does not fit well with what we know from research and what we hear from women with a learning disability, which is that they are more likely to experience sexual abuse (End the Fear, 2015). Anyone who works with survivors is likely to say that the abuse uncovered so far is probably the tip of the iceberg.

Sexual abuse of people with a learning disability remains a mostly invisible issue. There are many barriers to disclosing. These include an inequality of power with others involved in their lives, not being listened to and a failure by others to note changes in how they are communicating. There are also often strong reactions of repulsion, disbelief or shock that such a thing could really have happened. Sometimes, investigations are quickly closed through denial.

Sexual abuse has its own impacts – blame, shame, fear, desperation, guilt, suffering – which make disclosure difficult, sometimes impossible. Only some of the many people referred to Respond’s survivors’ service have been able to let someone know about such abuse.

But there are others who are referred because someone has noticed a change in their behaviour and understood this to be connected to something that has happened to them. These people have decided to speak up and say that they believe something traumatic has happened.

Behaviour: challenging – or cry for help?

It is rare for people with learning disabilities to be described simply through the things they can do, what they are interested in or how it feels to be in a friendship. More often, they are seen and understood through a fairly narrow and rather specific lens. It is likely that this is focused on their behaviour.

The framework currently being used to understand this is positive behaviour support (PBS). While it has its uses, it can be limited and, in our experience, often does not address how traumatic life events may affect the way a person responds to the world. That is why we hear so much about people being labelled as having behaviour that challenges.

In our experience, this behaviour is often a form of communication – it can be an expression that something unspeakable happened to them. How invisible are the symptoms of sexual abuse? It can be easy to interpret a person’s behaviour as meaning something else because that is more palatable. Because of this, people can be frightened to speak up about any concerns they have in relation to a person’s behaviour. One of the general reactions found in society is dismissal or disbelief. At Respond, through our survivor services, we see this type of denial response regularly in many different types of organisations.

Sexual abuse of this group of women elicits the most illogical and prejudicial responses within statutory and voluntary agencies alike. There is often a reaction of repulsion or denial. This can feel like an ignorant denial of shocking and traumatic disclosures, particularly when the perpetrator is seen with affection, admired or respected.

However, the responses in the L’Arche case are complicated. Its statement seems to deny the possibility that women with learning disabilities in its communities could have been sexually abused by its founder. Even communities and organisations set up with equality and integration at their very core can lose touch with those values when faced with having to think about the unthinkable. But this is not altogether a surprise because it is hard to come to terms with such a shocking violation of trust.

To have to reframe a saint as a perpetrator is bad enough, but to have to believe that the dream that this man had built – a man who had inspired so many others to work with him on this vision – has been violated is just too difficult to bear to think about. To think about something so painful, support is often needed in the form of supervision or reflective practice. In too many services, this is not prioritised, yet the damage done to people’s lives when this investment is not made is huge.

Most heinous act

Sexual abuse of a person with learning disabilities is one of the most heinous acts – a physical, sexual, psychological and spiritual attack on the most vulnerable – those who are only too often unable to receive justice and are unprotected. There are always difficulties around disclosures – fear and the knowledge of being undervalued in society. Sexual abuse has its own impacts – blame, guilt, fear and desperation. How then do women with a learning disability, autism or both express and disclose in such potentially hostile and dismissive environments?

Denial is the response experienced too frequently. Given how difficult it is for these women to disclose, how can they speak to anyone or receive the response they need? They need to depend on the strengths of those around them to be prepared to walk a difficult path together.

Towards the end of February, Irene Tuffrey Wijne was that person. She is a good friend of Respond and had been inspired directly by Jean Vanier early in her career to work with people with learning disabilities. She lived and worked in one of his communities. She, like so many others, was shocked and distressed to hear the breaking news and, after taking a short time to reflect, recognised what was most needed.

The people in her community needed to take time together to think about what had happened, to support each other with their feelings about this and to know that, together, they could support each other to think about how best to move forward. All support and care organisations – L’Arche among them – have safeguarding and conduct policies that indicate an open culture where disclosures of abuse or suspicions of it are welcomed. This is clearly positive. But such policies must be accessible to people with a learning disability, with a guarantee of being heard if they speak up.

Here at Respond, we are ready to offer support to anyone, anywhere, who wishes to speak up and reaches out to us.

● Summary Report. L’Arche International. 2020. ttps://tinyurl.com/tbupobc

● Respond: https://respond.org.uk/

Noelle Blackman is chief ex ecutive and Lynne Tooze is independent sexual violence adviser co-ordinator at Respond

References

L’Arche International. 2020a. What We Do. https://www.larche.org/what-we-do End the Fear. 2015. Disabled Women 2 To 5 Times are more Likely to Experience Sexual Violence than Non-Disabled Women.  https://tinyurl.com/y7qsdyba L’Arche International. 2020b. L’Arche International Inquiry into Historic Sexual Abuse by Jean Vanier. www.larche.org.uk/news/ inquiry-statement

Sheila Handley tells the story of the death of her 33-year-old son Richard, why it should never have happened and her fight for others in his memory

This is a journey… a journey through a life lived, a death that could have been prevented and the many lessons yet to be learned.

It all began when I was 28. Motherhood beckoned. Richard, my first child, was born, followed fairly closely by my two girls. Richard, who had Down’s syndrome, thoroughly enjoyed all the usual activities of family life. I have so many fond memories of his path through childhood. Constipation was the only stumbling block. From birth, he was diagnosed with probable Hirschsprung’s disease. His daily routine needed exercise, laxatives, a high-fibre diet, plenty of fluids and stretching games every evening to help him empty his bowels.

When he turned 18, the road became rockier. Richard suffered mental health problems. The friendly, cheerful side of his nature faded and he lost interest in things he had previously enjoyed. He was eventually diagnosed with a schizoaffective disorder. There were times when he was very withdrawn and he was sometimes aggressive. This was very worrying because he was suffering.

There followed a very bumpy period when Richard was in respite care. Regular manual evacuations were needed for constipation. He moved to an assessment and treatment unit (ATU) to have his needs monitored and assessed. The downside? it was about 30 miles from home. A comprehensive statement of health needs produced by the unit detailed the care needed to keep him safe and well and a residential placement was proposed. I was tortured by the anguish of Richard leaving home and by worry about handing his care to others. However, it seemed to be the only route. The accommodation was  in a six-place, purpose-built bungalow, only five minutes from home. This was beyond my wildest dreams.

The road became smoother. Staff worked with us, learning from our 18 years’ experience and carefully following the constipation care needed. He had the right diet and exercise and bowel charts were kept. Practice and communication were good. The medication regimen kept him on an even keel most of the time. Richard began to enjoy life again.

In 2010, the care home changed to supported living. Richard signed a tenancy agreement despite having no proper understanding of what it meant. Families were reassured that, while changes would affect administrative and financial matters, care would remain the same. However, unbeknown to me, changes were made to his care; bowel charts ceased and bowel monitoring became haphazard. I raised concerns about aspects of the care and was told: “Richard has the same right as everyone else to make unwise choices.”

Making unsafe choices

Richard quickly learned he could say “no” to a variety of things – cleaning teeth, bathing, cutting toenails, eating a high fibre diet, being monitored when pooing… The road had become a quagmire, making the journey unsafe. From Easter 2012, Richard slipped away. He withdrew from most activities and was very unwell. It was viewed entirely through the lens of mental health. The GP and psychiatrist did not consider a physical cause despite the known link between constipation and poor mental health and even though his medications had constipating side-effects.

In November 2012, the psychiatrist raised concerns about the hardness and distension of Richard’s abdomen. A trainee GP prescribed a concentrated dose of laxatives. Richard moved to an ATU to monitor his mental health. He was already on a collision course with disaster. He was taken immediately to A&E, admitted and, the next day, 10kg of faeces was removed from his bowel. However, his abdomen remained huge despite passing further vast quantities of faeces.

Junior doctors did not follow the protocol based on the MEWS score (an early warning scoring tool used to help clinicians identify deteriorating patients) derived from vital signs. Senior staff were not called; Richard did not receive the level of care needed. The interventions that could have saved his life were not provided. When the alarm call eventually went out, it was too late for Richard. He went into cardiac arrest and died. Yes, in 21st century Britain, a 33-year-old man died from constipation. He received poor care from every single agency involved and lost his life. His journey had ended.

I shall never forget that moment when, in the early hours, standing in a hospital ward, I was told my son was dead. I couldn’t take it in. I wailed like a wounded animal. A nurse repeatedly told me that I had to “accept that Richard’s time had come”. What? From constipation? He had died. The calling of an inquest filled me with hope that the many questions surrounding Richard’s death would be answered. Five months later, a meeting was held to discuss the outcome of the hospital investigation, before an inquest being timetabled.

The investigation was limited and the conclusions and actions based on it weak. The apparent aim was to minimise the part the hospital played in Richard’s death. It did not answer our questions. Little did I realise but a whole new journey was beginning – a journey both arduous and draining. Comprehensive complaints were submitted to five agencies involved in Richard’s care. I naively thought we would sit with them, explore what went wrong, agree potential changes and so gain the comfort of knowing that others would not suffer as Richard did.

A serious case review (SCR) was initiated a year after Richard’s death. Complaints were put on hold. The SCR dragged slowly on, eventually reporting in October 2015, nearly three years after his death. There was no meaningful family involvement despite our overarching knowledge of events; agencies could cherry-pick from the information submitted. Fortunately, we successfully argued for a sight of the draft report and were able to push things that would not otherwise have surfaced.

Finally, in early 2018, a lengthy inquest was held. Surely the journey’s end was in sight? I listened to barristers and a QC crafting a case to show that the care given had not caused problems. It did not seem to matter that the SCR report and the complaint responses produced by the agencies had seemed to say otherwise.

The scope was wide but, despite the gross failings and missed opportunities, the final conclusion was not neglect;  this was because it was not known what the outcome would have been had the failings not happened and opportunities not been missed.

I shall never understand this. If at least one agency had done a better job, Richard would not have ended up in hospital receiving care that fell below the level that the hospital chief executive expected his hospital to provide.

Action, not more research

So my own journey continues. I remain passionate about turning the so-called “lessons learned” from Richard’s death into actions that make death from poorly monitored and managed constipation a thing of the past.

Since May 2018, I’ve been able to campaign on a number of fronts:

● Telling “Richard’s Story” at eight conferences; several more are in the pipeline but are now on hold. The audiences are care providers, GPs, mental health nurses, carers, LeDeR (Learning Disability Mortality Review) programme managers and reviewers, social workers… I present a powerful story in the hope that those who hear will be galvanised into making change happen. It doesn’t need rocket science or more research; all the lessons are there. It just needs the will to turn them into action to prevent suffering and save lives

● Working with a small group of bereaved parents, guided and led by Noelle Blackman, chief executive of Respond (https://respond.org.uk) to produce resources for NHS England for LeDeR reviewers and families

● Being a member of an NHS England and RightCare Pathways working group to produce resources about constipation care for GPs and families

● Advising on the content of an easy-read My Poo record booklet to help people and their carers understand, monitor and manage bowels to avoid constipation.

Where has this journey taken me? I know Richard’s Story has reverberated across the land and that many have taken action to improve constipation care. Resources have been produced, people have received training and “poo” is far more widely spoken about.

I’ve been lucky to meet many wonderful people who are committed to bringing about change – people who genuinely care about the lives of people with a learning disability. However, the journey is not yet complete because premature deaths from poorly managed constipation still occur. A widely publicised recommendation from Richard’s SCR was for adults with a learning disability and complex needs to have a named care coordinator to review health needs and ensure that information is shared between professionals and services.

The coroner concluded that having someone to oversee and coordinate care might have prevented the development of the extreme situation that led to Richard’s hospitalisation. This is not a new idea. It was proposed in the CIPOLD (Confidential Inquiry into Premature Deaths of People with Learning Disabilities) report in 2013 and included locally in the Suffolk Joint Learning Disability Strategy 2015-20.

In February this year, the government response to the third annual LeDeR Programme annual report in May 2019 “recognises the importance of care coordination and information sharing to improve outcomes”. An evidence review of care coordination will report in summer 2020. It will inform guidance on how care coordination is delivered across health and social care settings. Nearly eight years after Richard died, a journey is being made – but at snail’s pace.

It is widely known that people with a learning disability have a life expectancy significantly shorter than those in the general population. Richard died aged 33; I could name many others. I hear of “lessons learned” after every premature death; this is nonsense – the deaths continue. It takes too long for lessons to  become actions that will save lives. Recommendations must be acted upon far more quickly. The roll-out of care coordinators could turn things on their head, making lives healthier and happier, preventing premature deaths and making investigations redundant.

How marvellous if this particular journey could end.

Support providers, dance companies, employment projects and counsellors have all had to work differently and adapt to life in lockdown over Covid-19 – rapidly and radically

As the country went into lockdown, organisations supporting people with learning disabilities had to respond fast, and show imagination, flexibility and boldness.

Creative amid chaos

Jo Adshead, chief executive of Linkability, a care and support provider, Lancashire

We’ve come a long way since the extent of our advice was to wash your hands. We wondered at first if coronavirus would hit Greater Manchester and Lancashire’s market towns where we work in the same way as it had other places.

Then we began to help anxious families debating how over-70s self-isolation would work alongside supporting sons and daughters. Staff teams were also making plans for their own vulnerable relatives, work and their own health, and worrying about loved ones elsewhere. Yes, we’ve had PPE issues but, so far, we’ve overcome them – our reception area is now a warehouse with distribution through the side window. Our staff at all levels are truly amazing; they’ve worked many, many additional hours, complied with social distancing and kept this terrible virus out of our organisation (fingers crossed and crossed again).

There has been little or no staff absence other than those who have been shielding or have had symptoms, and, even then, people have been fighting to get back. One employee made her lorry driver husband stay in an empty flat she knew of so she could get back quicker.

Another took up residence with the three women she supports for two weeks while two of them had symptoms, leaving her two young children with her husband. The rest of the team made rainbows for the women to wake up to on their front lawn and delivered pizzas to the doorstep.

Teams have thought up creative ways to occupy and comfort people and establish reassuring routines, including afternoon tea and activities in the sunshine. What has been striking is a real sense that we are all in this together and no one is unaffected. We’ve laughed and cried. We’re in chaos but then we’ve always thrived in ever-changing situations. It’s how we are, and we quite like that.

But we do wish this awful virus would go away.

Virtually interactive

Peter Rainford, volunteer at Strawberry Field Steps to Work programme, Salvation Army, Liverpool

We have all had to change how we work and be more creative. The Strawberry Field Steps to Work scheme has responded by creating Steps from Home. Steps to Work reaches out to adults aged 18-25 with learning difficulties or other barriers to employment through a training hub at the Strawberry Field centre, and arranges work placements in Liverpool.

Keeping trainees motivated and supported has been key. Our virtual activities include exercises, reflective quotes and sharing happy memories. Technology has allowed an informal way of “keeping in touch” to evolve into Steps from Home. Each day, trainees spend up to an hour interacting with each other online and the Steps to Work team. Sessions include wellbeing activities, quizzes, Strawberry Field‘s Got Talent and messages of hope and reflection. Trainees have made “self-soothing boxes” containing items that make them feel better and taken part in online lessons on how to draw cartoons.

Our trainees say Steps from Home offers opportunities to socialise as well as providing encouragement and support.

‘We shocked ourselves’

Noelle Blackman, chief executive of Respond, which works with people with learning disabilities who have experienced abuse or trauma

The core of our work is psychotherapy and our other services are informed by this. The pandemic and the notion of social distancing have challenged our key ethos of basing our work around personal relationships and being connected to the people that we support.

It would be so much better to refer to “physical” rather than “social” distancing. During such a time of crisis, we need to be in social contact to support one another. With this in mind, we shocked ourselves as an organisation by managing to move 90% of the people in therapy or receiving advocacy support to video platforms or telephone sessions within the first week or so of lockdown.

Most of our team would have thought this impossible a few months ago and been against working this way. However, wanting to stay connected has made the transition relatively smooth and successful. It is not as good as being in the room with someone but it is good enough and we are pleased that we have been able to keep these important connections going.

Next, we want to redesign some of  our training so it can be delivered online. This is difficult as much of it is based on experience and observation, but we are excited to see what we can create.

Practical help and legal advocacy

Dolly Galvis, chief executive officer of the Elfrida Society, advocacy and support provider, London Borough of Islington

Our advocacy team quickly changed working practices to ensure Islington’s Covid-19 response teams and resources were accessible to people with learning disabilities.

We are working with Islington Learning Disability Partnership to ensure those most at risk are assessed and support is in place. As well as social services, we work alongside We Are Islington (the council’s helpline), mutual aid teams, mental health support services, health professionals and others to ensure access to food, medicine, therapy, social support, legal advice and emergency repairs.

We continually keep up to date and share policy changes to ensure individuals understand their rights. Our specialist parent advocacy service continues to work with parents with learning disabilities to attend remote emergency court hearings, understand their rights, navigate the legal system, communicate with schools and ensure reasonable adjustments are in place.

Covid-19 has made our work even harder. We will continue to explore emergency funding and make use of government initiatives to remain resilient and respond effectively to increased demand.

Inventive ideas

Sue Pemberton, chief executive of Integrate, community-based support provider, Lancashire and Greater Manchester

There has been a big change in how we operate – we have gone from being a friendly, open office welcoming people in to having many people working at home and senior teams being quite dispersed. We have been lucky in that no one we support has had the virus so far, but have had lots of offers from staff to stay with people for the duration should that be necessary. Staff teams changed working patterns and have been amazing.

A lot of the people we support are struggling with isolation. Staff are being inventive regarding support. People we work with have been taking up gardening and cooking for the first time. One has decorated their hallway; another has built decking in their garden. People have made model cars and one a Lego Volkswagen camper van, which took 12 hours. One
person has become fitter and healthier through cooking healthier meals and eating less junk food. One man, determined to stay fit, bought a rolling road for his bike. All these people would normally be out and about, and staying in has been quite productive and positive for them.

We have adapted well to home working and Zoom meetings. I don’t think we have been hit as hard as those in London, although finding PPE is not without problems, and there are constant changes to legislation and guidance. We decided to look at the positives, and it’s been good to see the staff so upbeat.

Dancing together at a distance

Sarah Calderbank, project coordinator, at DanceSyndrome, inclusive dance charity, Lancashire

Everyone at DanceSyndrome was disappointed when they were forced to cancel regular community dance sessions
due to the coronavirus outbreak. Regular participants missed seeing friends and dancing together.

Knowing how important face-to-face interaction is to wellbeing, the company’s dancers put together a programme of online dance sessions to do at home.

They have been offering live, interactive Zoom sessions, with a small charge to help the charity to cover costs. There are also free sessions on YouTube, with new sessions released four days a week. All of these are jointly led by people with learning disabilities, are fully inclusive and can be adapted to meet individual needs.

The show goes on – on the BBC

Sarah Archdeacon, artistic director at Corali, a company where dance is created by people with learning disabilities, London

We thought carefully about the best ways to stay connected to our performers, some of whom had not been online before.

Our first idea was for dancers to make YouTube films so we could all keep dancing at home. Corali dancers DJ, Paul and Bethan created sessions. We know everyone misses seeing each other so have been testing out Zoom classes too. In addition, we are running “sign of the week” to help people learn sign language, and a monthly Corali creative challenge.

The BBC included a film we made last year with the Tate in its Culture Under Quarantine initiative. The response has been incredibly positive, proving the quality of dancers with learning disabilities and how they capture the nation’s imagination. It is not the same as being in the studio together, but it has certainly encouraged us to think creatively in new ways.