It also seems very timely, as contributors to Community Living have been lamenting the regressive steps they have seen back towards institutional “care”. The lessons of the past should not be forgotten.

When the purpose of the Royal Western Counties Institution, Starcross Hospital, a former “idiot asylum” in Devon, started to be seriously questioned, it had existed for more than a century. Hundreds of people had lived out their lives there in a separate, regimented world.

What followed was the first closure of a large “mental handicap” hospital in favour of a range of new community care services.

Health authority manager David King asked for an oral archive to be created before the memories of Starcross Hospital faded. Staff and residents were interviewed and what they said was recorded and transcribed.

King went on to head the national Mental Health Task Force and wrote a book on how the transition to community care was achieved (King, 1991). He foresaw a day  – correctly, it now appears  – when the realities of institutions might be forgotten.

King, who later headed health services in New Zealand, has contributed a commentary to the now-published archive extracts.

He writes: “Institutions like Starcross Hospital harmed human life and must never be repeated.”

His is a voice that should resonate loudly. He questions how it took so long to end institutional care.

The idea to close the hospital had come from within not above, yet even those with a vision for better care and the determination to succeed were emotionally torn, as the archive reveals.

Speaking soon after the closure, nursing officer Viv McAvoy, who was heading a new local support service, recalled: “In some ways I felt quite sad and, again, I felt quite glad. The whole thing is a conflict of emotions and still is.”

The interview extracts also shine a light on the circumstances that led to people being admitted and then living out their lives at Starcross Hospital. In many cases, staff lived out their working lives there too  – even their own holidays were spent with the people in their care.

Nursing tutor Tom Bush said: “People said they would never close it  – it has been a wonderful place. But I think they were very much living with a dream an old idea old memories If you talk to the new staff coming in, the youngsters would say: ‘Oh, it’s too big, it’s so impersonal’.”

Reading what the interviewees said, it is possible to appreciate that staff did their best within the very limiting confines of an institution.

Updating the buildings drained resources while doing nothing to alter the fact that this was a life apart from the rest of society for those who lived there.

Meanwhile, by the 1980s, the majority of people with learning disabilities or special needs were living with their families or trying to fend for themselves.

What the contributors said about the pride staff took in their work, the institutionalisation of those who lived and worked there and the perceived inadequacies of the early efforts to move patients into the community all help to explain why the status quo endured for so long.

Caution over independence

Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

There was also a deeply ingrained belief that the patients could not learn or adapt. Medical superintendent Dr David Prentice explained: “We were always bedevilled by this feeling of permanence that there was no way out for them ever standing on their own feet.”

However, staff discovered otherwise.

As King put it: “Although hospital care was supposed to be beneficial, release from hospital has been as good as a cure for so many who were thought to be beyond hope.”

The testimony in the interviews suggests that Starcross might not have been necessarily representative of large asylums in general and, perhaps, suffered from fewer of their most regrettable traits.

Nevertheless, it limited people’s lives. It was a big employer in the village of Starcross  – a village within a village you could say, but a place apart.

The philanthropy of the past had created the institution to provide a purpose in life but, in reality, “purpose” had dwindled to patients sitting on the boundary wall, looking out on a world denied them. They had no personal possessions, and no choice over the food put in front of them or the activities they could take part in.

For some, as the interviews reveal, institutional life had advantages: shielding them from an unkind or difficult world; a routine; friends close at hand; and even daily GP care.

But in many ways the ease of life was an illusion. There were plenty of downsides, not least being constantly in a crowd of people and having no sense of your own family in what was often a hothouse for antisocial behaviour.

Nursing officer Sheila Easby was at the heart of early attempts to move care into the community: “Originally, the groups that went into small hostels thought they were going into a different sort of institution but, at that time, it was better than the institution they came from.”

In praise of privacy

Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

She recalled: “I remember one resident she added: ‘One of the nice things about being out, I can go to the bathroom and I can lock the door I haven’t been able to do that before’.”

This was echoed by McAvoy: “The two awful things about the institutions was the total lack of privacy and the lack of choice, particularly in terms of diet and when they actually ate.”

“They were environmentally handicapped  – by the environment around them,” recalled nursing sister Jean Waldron, who had taken the leap from running a crowded hospital ward to overseeing a new local unit providing support and respite care.

“Some of them had been in hospital care since they were in their early teens and they were in their 80s now and had never had a bedroom of their own. Unbelievable!

“When you are elderly, you usually have problems with your waterworks… they literally had to go about 50 yards to get to the nearest loo and, to me, that was absolutely atrocious.”

Institutionalisation had a lot to answer for. Psychologist Dr Chris Williams explained at the time: “Behaviour problems  – they are not constitutional problems of mentally handicapped people, they are situational problems. When they have to compete with 30 other people then you hit your head somewhere and you find out how that works and you do it again.”

Staff and some residents saw the hospital through the lens of familiarity and liked to recall the happy side of life there  – and that also helps to explain why the institution persisted for so long,

Having decided that closure was the best and only viable option, the challenge was to visualise what could be provided instead. The vision of that time is a useful measuring stick for what passes for community care now, decades later.

To have your own room, your own front door, the chance to choose and not be closed off from the world  – all these should be rights. Equally, support should be available to make these possible. Life in the community should not mean stress and uncertainty, loneliness and empty days.

The institution opened as the Western Counties Idiot Asylum in Starcross, Devon, in 1864 – the picture above is from 1876. In 1914, it became the Western Counties Institution, Starcross. In 1948, it was transferred to the NHS. It finally closed in 1986, in line with government policy on closing institutions and a move to care in the community.

The difference outside

Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

The oral archive interviews reveal some key points that arose from the closure and the move to care in the community perceived by people involved at the time.

McAvoy pointed out: “The things that are better are the attitudes of the new staff, who have never probably set foot inside an institution. It’s lovely  – they do look upon people with disabilities as equals and they treat them like that naturally. That is absolutely superb.”

Easby said: “The local support units… so that you were still near your family … book yourself in and out,” but added: “One thing about community care,  you do need procedures and you need monitoring systems.”

Regarding respite, Waldron said: “Compared to. Starcross the unchanging routine there’s a tremendous difference. They go and sit and have coffee and chat to people, parents are in and out, a busy little unit.”

However, she warned: “You get some parents who will abuse the system and there are some who will only use it in a dire emergency… and I’ll say ‘It’s time he came in, I expect you need a break?’ If there isn’t short-term care for young people, the family aren’t going to cope.”

Perhaps Williams should have the last word: “I think it’s an important thing to realise that people didn’t ask to come back.

“It was said at a Starcross meeting, by a patient on the team: ‘Why can’t I live in a house like everybody else?’ And it’s when you try to answer that question It was Ken, who now lives in his own house in Plymouth.

“It exposes the bizarre fact that we were in the guise of treatment and hospital care. Looking back, we ask: How could we do those incredible things?”

Caroline Hill is a former NHS head of communications. She was asked to create the Starcross oral archive which is at  https://starcrosshistory.blogspot.com/

Read the stories from the Starcross archive

Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

As I read through the contents, the voices of nearly 40 people, talking decades previously, come back to life – I could hear some of these voices in my head as I had recorded many of the interviews and listened to a number several times while typing up the original transcripts.

All had lived or worked at Starcross Hospital and had agreed to share their thoughts and memories at the time of its closure. The archive contains colourful memories stretching back to the 1930s of life in and around the imposing Victorian building and how the closure came about.

Residents and staff have at last been honoured in a compilation of interview highlights I have edited. Starcross Hospital: What the Voices Tell Us is freely available at: https://tinyurl.com/6tehvys6

Not long after the company was set up, the pandemic came. We began to deliver interactive projects online and, thanks to an emergency Arts Council England grant, had time to develop and refine our approach.

Historic England funded a project where a group of young adults with learning disabilities from a day service used music to interpret a local area called the America Ground. On the Hastings seafront, it is where 18th century settlers claimed independence from the local government and sought to build a new community.

We worked with the same group to develop their musical and core skills in a project in which they composed original jingle music for a DJ on local station VDub Radio. This commission gave them a tangible, real-world outcome as well as a challenging musical experience and they embraced and excelled at it.

Building on these positive outcomes, we worked with Saxon Mount, a local SEN secondary school, to bring a remote musical experience into their classrooms.

With support from teaching staff, we realised a model of working that could be interactive and meaningful for the pupils despite restrictions on working in person.

I provided a variety of interactive musical items for our group work and saw the class through the lens of the camera operated by their teacher. It was very surreal to be leading a class of 13 year-8 SEN students through a process of music making from such a remote position but it was a thrilling and rewarding experience.

Growing a sound garden

Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

As restrictions began to ease, we could build on our achievements thanks to Hastings Opportunity Area, which funded a project to enable young people with SEN to re-engage with learning and develop relationships with peers and adults.

The toll of 18 months’ lockdown on these young people is hard to measure, and we wanted to take something fun and exciting into school to connect with them.

I devised the Sonic Garden as an exploration into sound through the use of unconventional sound-making items and the DIY instrument building culture that is part of my own musical background.

When I was a teenager, my friends and I had fun finding less ordinary ways to create sounds. It felt like exciting, unchartered territory for us young musicians. We would attach contact microphones to household items, and retune, modify and rewire our guitars into new configurations, finding new ways of making sounds.

The concept of the Sonic Garden was to shine a light on the sound-making possibilities of less ordinary sound sources. The aim was to make and use homemade instruments to create an accessible soundscape that was not so much dependent on ability to play an instrument as rooted in harnessing players ‘ curiosity to make an unusual sound piece.

Over 10 weeks, we embarked on a fascinating journey collecting sounds that would later be embedded into homemade sound-trigger surfaces we called sonic sound boards.

We built in lots of core skills work, with students cutting and preparing lengths of wood and other materials in design and technology lessons to make instruments.

The road trip zither

Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

In 1998 aged 22 on a road trip with some musician friends in America, I had built a bass zither resembling a set of stairs, which I called the sonic stairway. Twenty-odd years later, it proved to be an inspiration.

As house band producer for Carousel (a learning-disability arts organisation in Brighton), I supported a group of young musicians in 2019 to design and build a multiplayer instrument called the sonic tree. A performance at an experimental music event was well received by the audience.

The sonic tree and sonic stairway found a home in the sonic garden. After a successful pilot at Saxon Mount, this will hopefully be making its way to other SEN schools and community groups.

Sam Dook is a musician and co-director of Lifesize

Website: lifesize.org.uk

Facebook: lifesizecic

Twitter: LifesizeCIC

Instagram: lifesizecic

S.A.M. – https://www.imdb.com/title/tt11425868/

Oska Bright Film Festival
Oska Bites – https://oskabright.org/oskabites

There is no doubt that organisations and performers are facing significant threats to their careers and livelihoods after the pandemic.

Employment is precarious and insecure, according to UK Disability Arts Alliance’s report We Shall Not Be Removed, the first survey of its kind to look at the disability arts sector after the pandemic. It recommends additional targeted financial support to avoid further inequality for an already-disadvantaged group.

Nonetheless, some great work has been produced. Here are some you may have missed and some to look out for.

Short films explore punk, grief and desire

Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

Disabled Not Defeated, a 20-minute film made in 2018 by Rosie Baldwin, received a BAFTA nomination this year.

The documentary began as a showcase for a seven-piece post-punk band learning disabilities who had formed after completing a music course run by Culture Shift, an organisation supporting creativity with different groups across Sussex.

Baldwin initially intended to highlight the energy, musical talents and personalities of the band but, two months into filming, their mentor and friend Tom Selway took his life, and the film grew into a bigger story around the processes of love, grief and the strength found in music and the support of friends.

Planned festival screenings were thwarted by the pandemic but the film has been seen online by 40,000 people across the world. The documentary is life affirming, uplifting and a testament to the power of friendship. A must watch.

A critically acclaimed short film from last year is S.A.M.. This 16-minute film from Lloyd Eyre-Morgan and Neil Ely tells the story of a budding love affair between two teenage boys, both called Sam, one of whom has Down syndrome.

Set in a Manchester playground, the film is rare in its on-screen representation of someone with a learning disability who is also navigating his sexuality.

One of the Sams is played by George Webster, a Mencap ambassador. He says: ŇThe film is important to me because it’s about being yourself, accepting yourself, and accepting others for who they are.Ó

Eyre-Morgan and Ely considered how to work inclusively both behind and in front of the camera. They hope S.A.M. will be developed into a full-length feature film.

S.A.M. was shown at film festivals last year but the pandemic paused distribution. It is not available online now, but is certainly one to look out for.

Webster is also to star in a new science fiction film BEBE AI, which has an intriguing storyline: a young couple who have Down syndrome battle to overcome prejudice to save and adopt a baby android. The film is crowdfunding so it can be completed.

Festival grows and grows

Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

Oska Bright is the world’s leading festival for films made by or featuring people with learning disabilities. Founded in 2004, it has grown hugely and has become a renowned platform for creative, independent, learning disability-led film making. At the most recent festival in 2019, 99 films from 15 countries were shown.

The next festival in 2022 will be the first time it qualifies for the British Independent Film Awards (BIFA). This features creative independent film making and for Oska Bright to be included is testament to the quality of the films contributed by learning-disabled filmmakers in the UK and beyond.

For 2021 the festival has put together online content, Oska Bites, featuring some of the shorts from 2019. The last edition featured four films from around the world and heard from learning disabled people around the UK about their love of film. The move online also includes chats and Q&A sessions with filmmakers.

It included The Magic of Cinema by Linda Curtin, which features artists with learning disabilities who contributed art forms including painting, sculpture and performance. The 6-minute film is atmospheric and beautiful to watch. Also featured was Poti Pictures, from Tuscany, Italy, which uses stylised production techniques to create short films, video clips and documentaries inspired by social issues. The company’s Uonted! tells the story of Tiziano who desperately wants to see the Old West at an amusement park.

Oska Bright’s continuing success demonstrates the depth and quality of films put together by a dedicated and talented team of programmers. There will be more coverage of the festival in the next issue.

Landing a Spielberg role

Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

Finally, Tommy Jessop, best known for his role in Line of Duty, has landed a part in a Stephen Spielberg series. Masters of the Air is a Second World War drama produced by Spielberg and Tom Hanks for Apple TV+.

Jessop featured in the previous two issues of Community Living and there is no doubt he is be a trailblazer and role model for people with learning disabilities.

They had a bungalow lined up to purchase but the property investor who was going to buy it had had funding issues. I thought it sounded interesting and enthusiastically said (yes) without really understanding what I was embarking upon.

This young man had been known to the local authority for many years for all the wrong reasons – he had been inappropriately housed in various properties and his current landlord was evicting him for causing damage.

There was genuine concern about what would happen to him if a safe home could not be found. He was described as non-verbal and having complex and challenging behaviours, and his care team felt he was expressing his frustration at the situation regarding his property.

It was a real challenge, but I loved problem solving to find solutions that would work for him – it felt like a great use of my nursing skills combined with my property knowledge and some common sense thrown in. We created a safe, bespoke home for the young man, where he is reported to be settled with reduced staff support needs. My intention is that this is his home for life.

However, as a property investor, I had many challenges with the house; I struggled with getting insurance and a mortgage, and the property was down valued as the surveyor felt I had (ruined) it and could not see the value I had added. I ended up leaving far more money in the property than I had intended, and felt a bit burned.

Interest grows

Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

I bought a detached two-bedroom bungalow with an integrated garage, which was very tired and needed updating. The garage was converted into a carers’ suite and extensive renovations were carried out to make him a safe home.

It was a real challenge, but I loved problem solving to find solutions that would work for him – it felt like a great use of my nursing skills combined with my property knowledge and some common sense thrown in. We created a safe, bespoke home for the young man, where he is reported to be settled with reduced staff support needs. My intention is that this is his home for life.

However, as a property investor, I had many challenges with the house; I struggled with getting insurance and a mortgage, and the property was down valued as the surveyor felt I had (ruined) it and could not see the value I had added. I ended up leaving far more money in the property than I had intended, and felt a bit burned.

Buying to build bespoke

Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

We are now moving into the next phase of the service, where investors are looking to buy property to meet the needs of supported living providers and tenants.

This means providers can list the kind of homes they need and is especially useful for those supporting people with more complex needs who may need a more bespoke property created to meet their needs, such as the bungalow I developed.

On the back of this, we ended up setting up and running courses for property investors to help them understand supported living better. We then realised that many supported living providers do not understand property so we are developing training for them too.

We see the Gateway as an intermediary between the two groups. Through training, we hope they will communicate better, with the goal of working together to create more high-quality homes for those who need them most.

Landlords did not know how to find providers looking for property. At the same time, providers were struggling to find landlords to work with

Barriers

Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

There are still many hurdles, however.

Buy-to-let mortgages are difficult to get for landlords letting to supported living tenants, especially if there is 24-hour, on-site care; they cost more and are seen as higher risk. Likewise, insurance costs more and is harder to obtain. These barriers are frustrating and something we are hoping to change.

By demonstrating the collective, nationwide demand for so many properties, we are beginning to campaign to increase awareness of the need for them. We hope this will increase the availability of mortgages and lead to them being more competitively priced.

Supported living has been seen as a safe investment model for institutional lending for some time. However, the larger funds are generally only interested in the more lucrative deals – blocks of flats or larger properties.

There is a move away from shared accommodation and a growing need for individual homes for people with specific needs, especially with Transforming Care. This gap can be closed by private landlords who understand the long-term commitment needed.

Also, private landlords are generally more open to shorter leases, so providers are not forced into committing to 15- or 25-year leases just so they can get a property.

We have ambitious plans to make more property available for supported housing. Through this, we hope to give local authorities and providers more choice over leases – in both length and terms – which we hope will meet everyone’s needs better. It will also make landlords more aware of the need for property for supported living.

www.supportedlivinggateway.com

Lisa Brown is co-founder of Supported Living Gateway and host of the Supported Living Property Podcast

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Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

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All social care services are expected to implement procedures to protect people’s privacy, ensure their choices are respected and prevent physical, emotional, sexual or financial abuse. This includes instructions to staff on how to behave towards those they support.

Local authority safeguarding guidance policies include provisions such as: not disclosing any personal information about someone with whom you are working to any unauthorised person (including your own family and friends); not giving personal information about yourself or your mobile or home number to people you support; not taking them to unauthorised places (including your own home); and not giving them gifts.

Policies such as these are being implemented by statutory, private and voluntary social care providers throughout the country, led by legislation, by safeguarding, commissioning and inspection procedures, and by professional standards and guidance. The rules are enforced through staff induction training, inspection and regular supervision.

Staff are told this approach constitutes professionalism, and that must preclude personal relationships of friendship and life sharing. It protects people from harm, exploitation and unfairness.

However, I believe the implementation of these concepts of safeguarding can in itself constitute a major form of abuse. In my view and experience, this fails to meet a desperate need of very many people with learning disabilities.

Few friends

Has the very practice of safeguarding, designed to protect people from harm and exploitation, become a form of abuse itself? Paul Williams explores a disturbing question.

In 2005, a survey of a large sample of people with learning disabilities in England (NHS, 2005) found that 75% had no friends without learning disabilities and, of those, nearly half had no friends at all. Nearly one in five (19%) of the sample had no contact with any family members.

American writer David Pitonyak has written powerfully about people’s great need for friendship throughout life, particularly in his paper Loneliness is the Only Real Disability (Pitonyak, 2005).

Safeguarding, as currently practised, far from tackling this, actually enforces loneliness, isolation, a lack of friendship and a lack of family experience on people receiving care services.

This was brought home to me recently when I was with a person with learning disabilities and a supporter from the home where she lives. I asked her if she had a friend and she replied with the name of another member of staff, whereupon the supporter said in a stern voice: (No they aren’t. They’re not allowed to be your friend.)

The instruction to staff not to share information about themselves, not to introduce people to their family and friends, not to take people home, not to give them your phone number, simply reinforces the inequality between staff and the people they support and denies any possibility of genuine friendship. It also denies people the experience of friendship and family life.

The instruction not to talk about the person to (unauthorised) people or take them to (unauthorised) places can mean a person remains invisible and their strengths and achievements go uncelebrated in their community. Not giving gifts can mean failing to properly and reciprocally celebrate birthdays and other festivals.

If staff were allowed to offer genuine friendship to those they support, all these things would become possible and, I believe, would be welcomed by the great majority of both staff and those supported.

Supporting people with learning disabilities is long-term work. Many staff work with the same individuals for many years Đ in some cases a lifetime. This offers many opportunities for close friendship.

I know of several instances where people without a family have been taken home by one of their supporters, for example at Christmas, over many years, to stay overnight and be part of family celebrations, but the supporters have been told it is now (unprofessional) and cannot happen. There is a great sense of loss on both sides.

Tyranny versus equality safeguarding

Has the very practice of safeguarding, designed to protect people from harm and exploitation, become a form of abuse itself? Paul Williams explores a disturbing question.

Before the advent of the tyranny and risk avoidance within current notions of safeguarding, evidence showed fostering equality and genuine friendship between staff and those they support is beneficial and greatly needed.

The British Institute of Learning Disabilities in 1989 published a study of relationships between social workers and people with learning disabilities. In many cases, there was true friendship and sharing to the great benefit of everyone.

It reported: (The social worker’s task was characterised by informality. It took place within long-term relationships. Many people had their social worker’s home address and telephone number. Many social workers described themselves as friends of the people with whom they worked. Some service users shared this view and came to see their social workers as their friends too) (Atkinson, 1989).

More than 40 years ago, Values Into Action held what were called participation workshops to foster equal relationships between staff and those they supported. A whole weekend event was structured around equal sharing. Rooms, facilities and activities were shared and, if you asked a question of a person, you were expected to answer it as it applied to yourself.

A concept of (life sharing) was prevalent in organisations such as L’Arche and Camphill, deriving from their positive founding philosophies (Williams and Evans, 2013).

This concept prevails where the pressure to (professionalise) can be resisted. As L’Arche (2021a) noted: (People with learning disabilities have much to teach us and contribute to the world. During the last 50 years, we have learnt that one of the best ways to enable this is by creating a culture of shared lives between people with and without learning disabilities.)

There is mutual benefit in such relationships: (I got to know the three guys quite well over the course of the year, and it changed my life in ways that I had never expected. I was constantly amazed at how much I was growing through these friendships.

(I had thought I was coming to this programme to do a good thing and help people but actually it was me who was being cared for. I learned that I can experience meaningful, mutual friendship with people who are different from myself) (L’Arche, 2021b).

A study of a Camphill community involving life-sharing between people with learning disabilities and the extended families of their supporters came to this conclusion: (Living in extended families in a long-term social relationship with co-workers/assistants enables both groups to become familiar with each other’s pattern of communication: an essential step if a person with a learning disability is to learn of the world and express choices about what they want to do in it.

(It also helps generate a sense of community in which they feel part of a readily available, supportive and dependable social structure.) (Randell and Cumella, 2009).

A hug, a family, a different approach

Has the very practice of safeguarding, designed to protect people from harm and exploitation, become a form of abuse itself? Paul Williams explores a disturbing question.

This is what I would like to see. On arrival to support a person, staff give them a hug. When they ask a person what they’ve been doing, they tell them what they’ve been doing too.

Staff who wish to are encouraged to introduce the person to their own family and friends and to take the person home to experience family life. Birthdays, marriages, births, festivals and funerals are celebrated on both sides, with equal exchange of cards, invitations and presents.

Each person supported is helped to keep a record, for example photographs and an address book with contact details, which includes not only their own friends and family but also staff who they are close to and their family and friends.

Staff and people they support are encouraged to be each other’s friends on social media. If they leave, staff are encouraged to keep in touch and be willing to continue friendship with the person they have supported, through visits, communications and in other ways.

If staff wish to consider fostering or an adult placement, who better to do this for than someone they already know well?

Only in this way can the devastating abuse of imposed loneliness, isolation and friendlessness be tackled seriously. I believe that experience of this is common among people with learning disabilities and they are particularly vulnerable to it and concerned about it.

I also believe that being a true friend to someone and sharing your life with them is a much stronger safeguard against more direct abuse than rules and so-called (professional standards) (Williams, 2019).

Unfortunately, this issue has been exacerbated further by the Covid restrictions. Now is the time to reconsider what we are doing.

References

Has the very practice of safeguarding, designed to protect people from harm and exploitation, become a form of abuse itself? Paul Williams explores a disturbing question.

Atkinson D (1989) Someone to Turn to: the Role of Front-line Staff. BILD Publications

L’Arche (2021a) What We Do. https://www.larche.org.uk/what-wedo

L’Arche (2021b) Meaningful and Mutual Relationships. https://tinyurl.com/rxamst5j

NHS (2005) Adults with Learning Difficulties in England. Health and Social Care InformationĘCentre

Pitonyak D (2005) Loneliness is the Only Real Disability. https://tinyurl.com/9evcywwy

Randell M, Cumella S (2009) People with an intellectual disability living in an intentional community. Journal of Intellectual Disability Research; 53(8):716-726.

Williams P (2019) See people as friends to curtail abuse. Community Living; 32(4):6

Williams P and Evans M (2013) Social Work with People with Learning Difficulties. Sage

Rex, her autistic son with a learning disability, was nine at the time. Having battled with the special educational needs and disabilities (SEND) system at home to get her son’s needs assessed and met, Hannah was shocked by the apparent lack of understanding and the paucity of specialist learning disability or autism education and support in her native land.

“I saw all that need, and I thought “oh my gosh!” It was the first time I realised that Africa didn’t have anything. My parents didn’t understand anything,” she says.

Hannah soon met other desperate parents of children with similar needs who were struggling. It was then that an extraordinary thought came to her: to turn a house they owned in Ghana into a school for autistic children.

She immediately set about converting the house and, when she came back to London, mentioned her ambition to the headteacher of her son’s specialist primary school – Paddock School in Wandsworth, London.

The headteacher’s reaction was equally extraordinary: “She was fantastic and so excited. They were moving accommodation, so they shipped all their old stuff, the sensory room, everything to Ghana.”

Hannah employed staff locally and arranged for teachers from London to come to Ghana to train them.

Reyo Paddock School Ghana first opened its doors in May 2011 (www.reyopaddock.com). Hannah would run the school for the next 10 years.

Back in London, as Rex transitioned to specialist secondary school, his behaviour became more challenging for teachers and family. Hannah, like many parents of children with SEND, was finding respite support impossible to get.

It became particularly difficult to keep Rex safe and happy during school holidays so, every summer, Hannah took him to Ghana so that he could benefit from the structure of Reyo Paddock and spend time with his Ghanaian family.

These were precious moments for him: “He loved the music, he loved the food, he loved the environment – and so he saw his culture.”

Back in the UK, Hannah began setting up a small charity, SEN Parenting (www.senparenting.org), to support families in similar situations. Her aim was to help schools and families to work together to create consistency between home and school approaches, with simple support systems at home.

Hospital after an ‘incident’

Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

One year, just after she had returned to Ghana, Hannah received a call from Rex’s school. There had been an “incident” and they had taken him to the accident and emergency department, where he was sectioned. It was Rex’s 18th birthday.

“I left on Saturday and the next day Sunday that’s when they took him,” Hannah recalls.

“He spent one or two nights in the A&E, and they saw they couldn’t contain him there. And this is an autistic boy who needs to run.

“When he gets confused, he rips his clothes and destroys things – not in the sense that he wants to destroy things, but he can’t communicate as he is non-verbal. He is not able to express his frustration, so this is how he shows it.

“That’s when they used medication to suppress him.”

Hannah jumped on a plane back to London. When she arrived, Rex had been moved to a secure inpatient unit. Knowing what helped her son when he was feeling distressed, Hannah dashed home to pick up her crisis resources (sensory and visual supports), cooked his favourite meal and drove straight to the hospital.

When she got there, it was as if her son and his family had entered a different world.

She explains: “So many things come into play when you are 18. You have to look at capacity. The law changes. Child and adolescent mental health services cease at 18. There just wasn’t that transition for him… He entered into an adult zone and it was the weekend as well. Information was not being transferred.”

Thankfully, Hannah had brought the thick file she had kept with Rex’s reports and shared it with staff. They watched her putting in place the calming strategies that helped him – a combination of communication support, his favourite food, water, music, aromatherapy and other calming activities – and saw they were working.

Rex uses Makaton signs to communicate and was signing “toilet” but the ward nurses did not recognise this so were not responding. Hannah therefore found herself training the nurses in Rex’s most frequently used signs.

She also explained how running around and standing under a shower (15-20 times a day) would support his recovery.

“There was a good ward manager who allowed it, who wasn’t somebody who thought, ÔOh you don’t know much’ They listened and we worked together,” she says.

After a few days, with Hannah coming in to support him daily, the multidisciplinary team saw Rex improve dramatically.

By the end of the first week, the psychiatrist said Rex had stabilised, was responding well to medication and was ready for discharge. The hospital’s proactive ward manager escalated Rex’s case within the NHS and the London lead, Adanna Williams, became involved.

Williams listened to the family and respected their expert knowledge of their child and was, in Hannah’s words, “really instrumental in getting everyone to do what they were supposed to do”.

This meant that Rex was discharged from hospital in two weeks, rather than 5.6 years – the average length of stay, according to NHS Digital figures from 2020.

A new home

Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

Four months after discharge into short-term provision in Kent, Rex had his first care, education and treatment review. His social worker suggested a care provider that she had worked successfully with in the past, Right Support Management (www.rightsupportmanagement.co.uk).

They identified a three-bedroom property 20 minutes from the family home that could accommodate Rex, his 2:1 support and an overnight carer. They provided the tenancy and the care team, carefully selecting staff with the right skills to work with Rex and collaborating with the family from the outset.

“We the parents were working with him throughout from day 1,” says Hannah. “We explained Rex’s childhood, his past, what he likes, what triggers him, how he communicates And they took it all in. We are fully part of the care team.”

The care provider worked with the family to adapt the house to meet Rex’s needs – latches on windows, wipeable flooring and boxing in potentially hazardous items.

They installed a sensory light system that he could control, and important areas and items were labelled with PECS symbols. Most importantly, the layout of the furniture accommodated Rex’s sensory and self-regulation needs.

“Every day, he needs to run round a lot just to release energy. He has a little soft area where he can bounce on his ball a space so he can run around a little garden We are planning to get him a swinging chair to give him sensory input.”

The provider listened and took on board Hannah’s expertise in her son as well as her professional knowledge. She taught Rex’s staff how to use calming strategies and cook his favourite meals.

Thanks to this partnership working, Rex’s transition to his new home went well. He is now an active member of his community.

His week is planned with activities he enjoys – visiting local shops to buy the African foods he loves, learning how to cook, trampolining, going to the park and restaurants and seeing friends he has known since childhood at Bible meetings.

Expertise benefits others

Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.

Determined to use her expertise and the knowledge gained throughout Rex’s journey, Hannah decided to help other families whose loved ones’ needs meant that they required bespoke programmes.

As if a foundation in Ghana and a UK charity were not enough, she has established SEND UK Solutions (www.senduksolutions.org). SEND UK Solutions and the family designed Rex’s bespoke adult learning programme to develop his numeracy and literacy, as well as skills for life in areas such as laundry and healthy eating. SEND UK Solutions works with Axcis Education (www.axcis.co.uk) to provide his personalised education programme.

She continues to run SEN Parenting, which runs workshops, informal meetings, wellbeing sessions and a WhatsApp group. More recently, she has been working on crisis prevention with NHS England and voluntary organisation A2ndVoice (www.a2ndvoice.com), running training for black and minority ethnic families with children and young people who are autistic and/or have a learning disability.

“Because of my experience in Ghana and cultural background, I know the main problems that affect stigmatisation, the family not accepting. They can look down on people with disabilities and feel they are not supposed to mix with them or they have to Ôgo back to the gods’. It’s that community thinking that it’s a curse so you have to have prayers or something,” she says.

“They [services] say it’s bad parenting skills and the barrier of communication as well In my experience, training can work for not only the mums and dads but also the wider family So, when they accept it and they understand, they know how to help them and then they respond.”

For Hannah and her family too, there has been progress: “It’s like a dream come true. He’s much more settled and smiley and much more able to engage and learn Although he has his needs, we’ve created the house to accommodate his sensory needs and his communication needs it’s bringing the best out of him.”

Although Rex’s needs have been described as complex, the key things he needs for a safe and happy life in the community are simple, as Hannah explains: “Living with people who understand him and want to make him happy, who will work hard to get the best out of him, interact with him and see him as a person. And family being part of his everyday life. Getting close to the family – that’s the number one.”

This is the second article in our series on a positive life after assessment and treatment