Understanding Profound Intellectual and Multiple Disabilities in Adults

Dreenagh Lyle

Routledge, Abingdon, 2019, 184pp, hardback £115; ebook from £21

In this book, Dreenagh Lyle launches a strong critique of what she sees as the marginalisation of people with profound intellectual and multiple disabilities (PIMD) in learning disability policy and practice.

She criticises the Valuing People strategy which, in its drive to ensure its central principles of inclusion, choice and independence, she believes ignored the lifelong specialist care and medical needs of those with the most profound disabilities.

To fit the PIMD group inside an all-embracing policy, we have constructed a fantasy “as if” world in which non-verbal and often sensory-impaired people with very high levels of developmental deficit are deemed capable of expressing an opinion, getting a job, joining communities and achieving independence  as those with mild impairments at the other end of the spectrum.

In attempting to be inclusive, this approach becomes exclusionary in denying those with PIMD their own unique personhood, and withholds the specialist support they need to become included people.

The book makes uncomfortable reading for supporters of the social model of disability and for advocates of an all-embracing inclusion model.

Valuing People was inspirational, Lyle agrees, but only for those who could fit its model of what a person with a learning disability should be like. Her argument is an important and convincing challenge to widely held orthodox opinions about social inclusion.

The opening chapters dissect the trajectory of learning disability theory and policy from normalisation to personalisation, leading to what she calls the illusions of Valuing People.

Lyle then uses her experiences as mother of Odyssey, who has PIMD, to outline an approach that places the person.

Simon Jarrett

Professionals and parents came together at the UK’s only national event focusing on people with profound and multiple learning disabilities. Jo Grace was there

The Great Exhibition Hall at Birmingham University buzzed with excitement, as 200-plus exceptionally passionate people flooded it with one mission in mind: to raise the bar with regards to what best practice looks like for people with profound and multiple learning disabilities (PMLD).

The Raising the Bar National PMLD Conference is the only national UK event focusing on the support of this group of people. It brought together speakers, exhibitors and delegates from across the UK and beyond to inspire and promote good practice.

Their tool for this bar raising? A document written by a dedicated group of people that describes in 13 bullet points what this care might look like – Supporting People with Profound and Multiple Learning Disabilities: Core and Essential Service Standards – which was first issued in 2017.

The hope is that services and settings that host people with PMLD will use the document as a tool to guide their provision and that those inspecting such settings might use it to judge how they are doing.

Unlike other events, this was not just professionals talking to professionals or parents to parents, it was not just education, just adult care, just the medical world – it was everyone working together for a common goal.

Seeing the whole person

On the main stage, Andrea Sutcliffe, outgoing head of the Care Quality Commission and newly appointed chief executive of the Royal College of Nursing and Midwifery, began the day calling for more learning disability nurses and underlining how much people matter.

She was followed by family carer Jeanne Carlin who told delegates: “Consultants saw my daughter organ by organ – it was only when they began to see her as a whole person that her life was saved.” She spoke about developing a holistic approach to care for her daughter Erica.

From Australia, Sheridan Forster, a researcher and speech pathologist, challenged the room with the notion of subtle ableism hidden in presumed competence. Forster was closely followed by Professor Melanie Nind (pages 20-21), famous in the PMLD world for her role in the development of intensive interaction, talking about the importance of belonging.

By this point you would be forgiven for thinking the full content of the day had been covered, but that was just the first hour of an extraordinarily packed programme of keynote speeches and interactive workshops.

Like the organisers of the event themselves, the speakers worked in a voluntary capacity and the whole day operates on a not-for-profit basis. It is not a job for anyone and it is not for making money – it is solely for Raising the Bar.

Everyone there and the many people following the event through social media – its hashtag #RtB3 trended in the top 100 hashtags in the UK on the day – are working towards a common goal of a better future for people with profound and multiple learning disabilities.

Creative powers, strong stories

In the afternoon, delegates were joined by actress and comedian Sally Phillips, who lent her celebrity status to raise the profile of the standards.

Inspirational presentations were given by Frozen Light, who discussed how they created high-quality immersive theatre, and Rachel Wright from Camp JoJo, who talked about the lengths they go to enable people with complex disabilities to enjoy a camping trip. I told delegates about my award- winning Sensory-being Project, which sees people with profound disabilities meaningfully co-designing sensory resources with designers.

All gave us glimpses of how high the bar could be. Parent Emma Murphy and adult care professional Erren Wheatland showed how rich the lives of people with profound disabilities could be if they were provided for correctly. As Murphy showed us photo after photo of her son, “happy little Hugh”, she reminded us that she has had to repeatedly argue for his right to life and justify that his was a life worth living.

The images of adventure, joy, engagement, connection and community stood in stark contrast to Alison Pettit’s presentation about her son Timmy.

Failings in provision for Timmy meant that when he developed a rare disease, his daily cries of agony went unheard for two and a half years, dismissed as “behaviour”.

Pettit and her wife fought desperately to be heard but lost the right to care for Timmy, were reported to social services for talking to him about his impending death and were, ultimately, unable to protect him from a painful feeding regime that authorities at the time insisted was in his best interest.

Pettit stood alone at the lectern, her voice was clear, brave and unwavering, while those listening struggled to keep their emotions under control.

The bar must be raised. Together we will raise it.

• Supporting People with Profound and Multiple Learning Disabilities: Core and Essential Service Standards is free from www.pmldlink.org.uk

t @PMLDlink, #RtB3

f www.facebook.com/ groups/138188023527963/

Jo Grace, is founder of The Sensory Projects (www.thesensoryprojects.co.uk) and a sensory engagement and inclusion specialist, trainer, author and TEDx speaker

‘Belonging’ is the new yardstick by which we measure whether people are full members of the societies they live in. In our rush to adopt this, have we given sufficient thought to those with the most profound learning disabilities? ask Melanie Nind and Iva Strnadová in their book

In all the debates and campaigns for the rights of people with learning disabilities, there are always groups who remain relatively invisible and under-served.

One such group is people with profound and multiple learning disabilities (PMLD) or, to use the more mainstream term, people with profound intellectual and multiple disabilities.

This group’s support needs are highest and most pervasive, and they are likely to have physical and sensory impairments and poor health interacting with their profound cognitive impairment. They are still likely to have segregated school and adult provision.

In reflecting on the UK situation, Rob Greig (2005) observed that these people have not benefited equally or sufficiently from policy changes such as Valuing People, and Jim Mansell (2010) noted that parents reported that their children were often seen as just too impaired to be catered for.

A book about belonging

So where and how do people with PMLD belong today when interest in and the realities of belonging are gaining ground?

As governments have claimed, then diluted and even sullied the concept of inclusion, interest in the idea of belonging has grown. Frustration over what inclusion movements have achieved for people with learning disabilities has left ample space for getting behind a new idea such as with the Belong Manifesto, Catherine de Haas with daughter Johanna launched in March 2018 by two UK organisations, Books Beyond Words and Access All Areas. They advocate pledging simple and practical things we can each do to help people with learning disabilities belong.

Their simple proposal – to get people talking about what it means to belong – got us thinking about whether the concept is expansive enough to include everyone, including people whose learning disabilities are profound.

The Belong Manifesto was one of the inspirations for our new book. Another was the involvement of Johanna de Haas with her mother, Catherine de Haas, in the Social History of Learning Disabilities conferences at the Open University.

Presenting together at what has been an increasingly inclusive event, they demonstrated powerfully how Johanna, who has PMLD, belonged in the line-up of presenters. They were pushing the boundaries of what is possible with open minds and excellent support.

The book idea also took hold during a time when a new generation of doctoral researchers were showing how people with profound and multiple learning disabilities could be participants in their research as well as more generally in the domains of study and practice from which that research came, such as education, life story work, art workshops and everyday communities.

What does it mean to belong?

Working on the book has given all the contributors space to reflect on what it means to belong and the growing literature on this.

Geographers such as Ed Hall and Andrew Power have highlighted the sense of belonging in welcoming spaces, which links the concept to social inclusion and connectedness.

Inclusion, however, implies being on the inside of something, usually mainstream in nature. Connectedness is associated with the number and quality of connections we have with other people and with places. Belonging has links with community and it also overlaps with citizenship – our rights, responsibilities and freedoms as part of society – which is why there is particular interest in belonging in work with refugees.

Belonging, though, carries with it ideas about feelings and identity. It is understood to be a “fundamental human desire” (O’Donohue, 1998) and a basic human need (Antonsich, 2010) central to wellbeing. If we are lucky, we can enjoy a sense of feeling at home, knowing “I belong here” among familiar rituals, perhaps developing shared stories and spending time communicating with people that matter to us (Block, 2018).

Some studies have addressed belonging for people with learning disabilities by seeking their views and experiences.

These have highlighted the importance of having friends with similar experiences, including experiences of having a disability (Renwick et al, 2019; Strnadová et al, 2018). This might mean spending time together in segregated or safe spaces (Robinson et al, 2014). Being able to contribute to society in a meaningful way was also seen as part of belonging (Strnadová et al, 2018).

In the book, we have addressed belonging for people who cannot discuss belonging with us but who might be able to show us in other ways.

Pushing the boundaries

The chapters are organised into three sections: Belonging in Education; Belonging in Research; and Belonging in Communities. Each part includes chapters that show how people are pushing the boundaries of inclusion so children or adults with profound and multiple learning disabilities are enabled to belong.

Each section has a short account from a family member, which poignantly illustrates the human desire to belong and the forces working against this for families. Through this, we come to understand belonging and its counterpart for people for whom basic belonging is difficult.

We see that belonging is sometimes experienced in segregated settings; people do not have to be in a mainstream setting to belong.

Not all learning disability bodies have got to grips with belonging; self-advocacy organisations often do not include people with PMLD.

New forms of belonging

Without repeating all the arguments in the book, we can illustrate some of what belonging might look and feel like if you have PMLD, according to some of the contributors.

Ben Simmons shows children involving Emma, their peer with PMLD, in their play routines. Emma engages visually and with heightened attention and excitement.

Catherine de Haas relays how a young friend of the family and her daughter shared the fun of swapping shoes.

Mutuality is critical to belonging, but finding ways to simply be together can be hard for adults. This can involve non- disabled people grappling with all their uncertainties about how to relate to the person with profound disabilities in ways that are welcoming and respectful.

Sheridan Forster shares her personal learning journey with this. She tells how she helps care staff to spend short periods of time just being with and focusing their attention on a person. They reflect on that, ultimately learning to become attuned to the other person. Relational belonging here is being attuned together. Jill Goodwin shows how an art installation may help this along.

For Melaneia Warwick, it was seeing the world through the perspective of someone with profound disabilities. In her study, a participant in an inclusive arts project used a body-worn video camera to contribute to the research.

Repeatedly in the book, we see people finding and experiencing their common humanity, being playful together, being focused together or just being together.

In terms of community living, belonging may be more than just finding a place in the hearts and minds of others. It can be about having a rightful presence. In the book, we see people with profound and multiple learning disabilities being a part of research projects and community groups, contributing in unique ways.

Importantly, we see how the people advocating for them negotiate the ethics of their involvement and the practicalities of finding ways to hear their stories.

While training, supervision, creativity and leadership play important roles, the main ingredients here are empathy, will or desire, and time. Without these, people with PMLD will continue to be missing from our playgrounds, our choirs, our conversations and our communities. It is about time they belonged and that we talked more about making this happen.

• Belonging for People with Profound Intellectual and Multiple Disabilities: Pushing the Boundaries of Inclusion will be published by Routledge in spring 2020. It is dedicated to the memory of Johanna de Haas. The contributors are Shoshana Dreyfus, Ben Simmons, Bea Maes, Anneleen Penne, Katrijn Vastmans, Michael Arthur-Kelly, Jill Goodwin, Hilra Gondim Vinha, Debby Watson, Noelle McCormack, Melaneia Warwick, Clare Palmer, Jan Walmsley, Sheridan Forster, Catherine de Haas, Liz Tilley, Sue Ledger, Melanie Nind and Iva Strnadová

Melanie Nind is professor of education at University of Southampton, director of the Centre for Research in Inclusion and co-director of the ESRC National Centre for Research Methods

Iva Strnadová is professor of special education and disability studies and academic lead research at the Disability Innovation Institute at the University of New South Wales, Sydney

References

Antonsich M (2010) Searching for belonging – an analytical framework. Geography Compass. 4(6): 644–659

Block P (2018) Community: the Structure of Belonging. 2nd edn. Oakland, CA: Berrett- Koehler

Greig R (2005) The Story So Far … London: Department of Health

Mansell J (2010) Raising our sights: Services for Adults with Profound Intellectual and Multiple Disabilities. London: Department of Health O’Donohue J (1998) Eternal echoes: Exploring our Hunger to Belong. London: Bantam Renwick R et al (2019) Voices of youths on engagement in community life: a theoretical framework of belonging. Disability & Society. 34(6): 945-971

Robinson S et al (2014) In the Picture: Understanding Belonging and Connection for Young People with Cognitive Disability in Regional Communities Through Photo-Rich Research. Final Report. Lismore, New South Wales: Centre for Children and Young People, Southern Cross University

Strnadová I et al (2018) “… but if you’re afraid of things, how are you meant to belong?” What belonging means to people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities. 31(6): 1091-1102

Leo Andrade was joined by hundreds of people to protest over how people with learning disabilities were being treated in assessment and treatment units. Seán Kelly interviewed her

We should strip naked and chain ourselves to the railings at Westminster.” Leo Andrade was talking to a friend who, like her, was a mother of an adult detained in an assessment and treatment unit (ATU).

Both felt stripped of their voices and also that their children had been stripped of their rights. The question was how to bring the issue to public attention.

The friend said she would chain herself at Westminster but, not unreasonably, she drew the line at being naked. Eventually, another friend persuaded Andrade that she would be in danger of being arrested and locked up. Not a great situation for a single mother of three children.

So Andrade developed the idea of a week of protests using posters which showed her metaphorically “stripped” of her voice and her rights. I first met her after being asked to take the photos. My wife Mary came with me to Andrade’s house and, together, the three of us made photos of her being physically restrained, looking frightened and with a hand or tape across her mouth.

Designer Henry Iles then did some great work to turn them into posters and fliers and Alicia Wood, the co-founder of Learning Disability England, added some strong text. As Andrade says, the results were powerful.

Recently, I met her again to reflect on the campaign and to hear more about her son Stephen and his life in ATUs.

Andrade describes the years Stephen spent at St Andrew’s Hospital and later at the Priory. No one would deny that Stephen needs care and support.

Andrade says he is autistic with mild learning disabilities. He has limited speech but he can read and he has a very funny sense of humour, she says, along with “a gorgeous smile with dimples”.

However, he does sometimes harm himself by banging his head onto hard surfaces, which can be difficult to deal with.

At one point, her local authority was paying £14,000 a week to the ATU for three-to-one support for him. Despite this, he suffered numerous injuries and visits to hospital A&E departments.

At home, Stephen liked to have a shower every morning and a bath at night to settle him before bed. At St Andrew’s, this didn’t happen as it was not part of the institutional regime. However, in Andrade’s opinion, he had not had a bath or shower for six months. She says his hair was matted, his underwear was stuck to him and he smelled terrible.

When she asked staff about it, they said that they were not allowed to touch Stephen or lead him to the bath. They said Andrade could not give him a shower as she was not insured.

So she took matters into her own hands. On the next visit, she and her then husband brought large water containers. After paying £2 to the café in the grounds for heated water, they hung a sheet from a tree to create a private space and gave Stephen an outdoor shower. She says: “He was shivering. But you should have seen the happiness of that young man.”

She is still angry. “They call this a hospital? It is worse than a prison. Even prisoners have rights – they get showers.”

Finding others

Andrade was in despair. With help from a friend, she contacted Dan Scorer at Mencap. Scorer listened to her and enabled her to join a Mencap parents’ group set up after the Winterbourne View scandal.

She says the support was crucial to her own wellbeing. “I can categorically say now that Dan saved my life,” she reflects.

By the time Stephen was at the Priory, he was on eight antipsychotics. Andrade says at this point his tongue was swollen and he no longer spoke at all. On one visit, he just managed to walk over and sit next to her before falling asleep.

He continued to self-harm despite the high level of supervision he was meant to have. On one occasion, he hit his head on a hard surface, causing a gash from forehead to scalp that needed 80 stitches. It seems he was also injured by others. His arm, wrist and fingers were all broken.

Andrade says that, in addition to the medication, he was sometimes kept in a straitjacket all day. Staff said the straitjacket was better than being in complete isolation.

One day, on a visit at the Priory, Stephen took her to the toilet and showed her serious injuries in between his legs.

Andrade says that, within the bruised and bloody damage, she could clearly see what appeared to her to be the print of a boot.

“I felt that Stephen was going to die. My son is coming home in a box,” she says.

However, she was unable to get him discharged. She says that discharge dates were promised but they came and went. With the help of friends, she kept fighting for Stephen’s release.

Mencap helped her to take Stephen’s story to the local paper and onto radio and TV. She met MPs and eventually spoke with three successive ministers with responsibility for health and social care

– Sir Norman Lamb, Alastair Burt and Matt Hancock. She says that Lamb really helped to move things on for Stephen.

When she asked Burt if he would continue that work, he said he could not issue instructions to local authorities. “Then what the fuck is the point of having a minister?” she asked. Apparently, he told her that was “a good question”.

One day Andrade was contacted by staff who said Stephen had a lump on his chest. It turned out that his collarbone had been fractured in three places.

Andrade says staff sent her to the wrong A&E department while Stephen was being x-rayed elsewhere at a private hospital.

Hours later, Stephen was brought to the general hospital. The consultant was concerned because he said such an injury was usually caused by a car crash or falling downstairs.

Stephen had not been in a car and there were no stairs. Therefore, the consultant said, it must have been some other excessive force. He also said the injury had happened almost two weeks earlier than staff had noticed it.

Andrade reported all this to the police. She says the police reviewed CCTV tapes and saw Stephen being restrained with significant force and being thrown across a room, either of which could have caused the injury.

When interviewed by police, one staff member accepted that he might have caused the injury while restraining Stephen. Andrade says this employee was actually one of the best and that she understood the difficulties they experienced including being understaffed, undertrained and underpaid. She eventually wrote a letter to the man forgiving him.

By then, Stephen had moved to a community setting. Andrade is thankful Stephen survived. “He could have been one of the statistics,” she reflects.

Andrade knew that she had to campaign for an end to the ATUs as “all my friends were going through this too”.

Her campaign was called #Stripped of Human Rights. The plan was to protest outside NHS England’s offices in Victoria Street and at the NHS England headquarters at Elephant and Castle, both in London.

On social media, the plans grew and people across the country joined in.

Andrade says that more than 1,200 people

came to protest in London. In Newcastle, 500 people demonstrated. In Birmingham, the protest was supported by the local Mencap and attended by 200 people.

But the impact on policy was disappointing. Andrade received a letter from NHS chief executive Simon Stevens via Ray James, his national learning disability director, but says it was just

a courtesy. “It told us nothing that we didn’t know,” she says.

As for Stephen, he is much happier living in a community service. Andrade says: “He has good people with him now. They like Stephen. I can see care and respect.” It is the very least someone should have.

In the future, Andrade hopes to get Stephen home properly. And she has not given up protesting. She has gone back to the idea of chaining herself up – this will happen next year at an ATU. After all, she says: “They need a rude awakening.”

Seán Kelly was chief executive of the Elfrida Society from 2001 to 2012 and is now a writer and photographer