“Sometimes I rush into things and it goes pear shaped. I don’t think everything through. I want my supporters to help me understand the situation, so that I can think through the right road for me. I want them to help me understand.”

This comment from David Jeffrey, a self-advocate from London, sums up why Paradigm launched supported decision-making workshops and a free guide (available on our website) for anyone in a support role. Our training organisation co-produced the guide with self-advocates.

Enabling someone to decide for themselves is a basic human right highlighted in the UN Convention on the Rights of Persons with Disabilities, the Mental Capacity Act 2005 and the Care Act 2014.

Often people will be offered only one option, for example a move into residential care.

The Mental Capacity Act should uphold people’s rights to make decisions, from small everyday decisions such as what to eat to bigger ones such as over where to live.

But often, people with a learning disability are stopped from making decisions because others think it unwise.

If a decision seems risky, it is important to check if the person understands the risks and choices. They may need support to consider the options or find better ones.

Lucy Series, lecturer at the School for Policy Studies at the University of Bristol, contributed to our guide.

“Most people take for granted that they will make key decisions about their lives. We also know that being able to make decisions about our own lives is critical for wellbeing,” she says.

Supported decision-making involves:

• Asking how someone wants to be supported
• Asking if there is anyone they would like (or not like) to help them make the decision
• Making or finding accessible information about the options
• Helping someone find out about the choices available
• Support to understand and weigh up the pros and cons of each option
• Help to identify any risks and explore how to address them
• Supporting the person in expressing their feelings about each option.

Often people will be offered only one option, for example a move into residential care.

Take one young man we know – let’s call him Tim – who does not use many words to communicate.

He was supported to take part in weekly swimming sessions but these usually ended abruptly, with support workers taking him home because he was too upset.

One of the home team who knew Tim well was asked to go along to find out what was happening. As they drove there, Tim was happy to be going out, clapping, cheering and saying “car”.

But, when they got to the road leading to the pool, he became upset, with his distress escalating when one of the staff got out of the car to get his wheelchair and another tried to remove his seatbelt.

The person who knew him asked if anyone had considered that Tim did not want to go swimming – maybe he didn’t need to return home but try something different.

She asked Tim if he wanted to go for a drive as he had loved the journey. He stopped shouting and, as they drove off, shouted: “Hooray.”

This distressing experience could have been prevented if staff had offered him support to decide on the activity.

Our guide includes a decision flow chart to help anyone in a support role to think through this process.

It includes questions, such as what kind of issue is involved: a big decision or a smaller one? Does the person prefer a certain communication method, so they can fully understand the options?

The resource also includes downloadable checklists to help keep the person at the centre of the decision-making.

We need to be upholders and campaigners – not gatekeepers – in upholding people’s rights so they can, with appropriate support, steer their own way through life.

Sally Warren is managing director and Jo Giles is associate at Paradigm

To be ready for adult life after school or college, you need the right information
– and this should be accessible, useful and interesting.

Young people had been critical of Wiltshire Council’s previous guide on preparing for adulthood. It was “boring” and had “too many words”, they said. They found it confusing and could not easily find the information they needed, plus it did not provide the details they wanted.

They wanted colours, photos and information shared in a more accessible way.

The right language

We wanted to co-produce a resource to support young people to move on that used the same language they did.

In Wiltshire, 5,315 people have education health and care plans. Our preparation for adulthood team visited mainstream and special schools and colleges.

Students looked at a draft guide and gave feedback verbally or were supported to complete a written feedback form.

We overhauled the guide and changed it from a dry, wordy document into a colourful, accessible resource. A key result of the feedback was that the language was made clear and relatable.

Our Growing Up and Moving On guide helps young people with special educational needs and disabilities (SEND) consider what they want to do after school. It features some of the 100 young people who helped shape it.

It includes tips on money management, benefits, independent living, clubs, activities and volunteering, taking care of health as well as help and support and local, independent providers of this.

Wiltshire is by no means the first organisation to use co-production, but we think how we engaged with young people to develop the guide is unique; they had full ownership and it reflects their language.

For example, the word “transition” is traditionally used to describe the move from children’s to adult services. This term is ambiguous and can describe many different events.

The word transition was replaced with “growing up” in the guide – because that is fundamentally what it is about.

Considering careers

The document, which is now just over a year old, has been shared in SEND and mainstream schools.

Based on the guide and the work to produce it, Wiltshire Council will hold its second Growing Up and Moving On event for young people with SEND in October at the Civic Centre in Trowbridge.

The aim of these events is to allow young people to see for themselves what is on offer. They can meet professionals and services, ask questions and get information so they can make decisions about their future.

Last year’s event at the Corn Exchange in Devizes was attended by around 100 students, along with teachers and support staff. There were 17 stalls hosted by various professionals, including those in the fields of education, social care and employment.

Speakers included a young woman who talked about her education, her work as a massage therapist and her plans to work for Victim Support.

Students from Fairfield Farm college spoke about their learning experience, what they wanted for the future and what they would like to find out about.

We hope young people will gain knowledge from the events and the guide and put it into practice, recognise their potential and go on to lead independent and fulfilling lives – and maybe consider options that had not occurred to them previously.

Dan Wilkins is head of adult social care transformation and quality at Wiltshire Council; Abbie Mines is transitions coordinator at the 18-25 Moving On Service at Wiltshire Council

Belting out Beyoncé’s Halo in front of a room full of friends takes confidence, just as conquering an eight-metre climbing wall takes skill and persistence.

I have watched Gabriel Ciubotaru achieve both of these. This incredible young man has a rare chromosome deletion that manifests in learning disabilities, cerebral palsy, feeding difficulties and balance issues.

As inclusion manager at Future Youth Zone in Dagenham, Essex – part of the OnSide national network of youth zones – I am lucky enough to work with 369 young people with additional needs, equivalent to 10% of our membership.

OnSide Youth Zones are state-of-the-art buildings located in disadvantaged areas and open to anyone aged 8-18 years or 25 years if they have an education health and care plan. The OnSide network sees 50,000 children and young adults come through its doors every year, nearly 4,000 of whom have additional needs.

We provide a well-equipped, supportive space that allows young people to find their passions and confidence, mentored by highly trained youth workers. We also host Futurebility day sessions for disabled members.

Every child deserves the chance to make friends and to thrive in social situations. That is no different for those with learning disabilities.

Pupils spend 85% of their waking hours outside school, so inclusion cannot end at the school gates.

We know from families that without the specialist services provided by Youth Zones and other charities, many young people would be stuck at home, lonely.

As for Ciubotaru, when he isn’t at college studying life skills, he is here. He says: “I feel safe and happy at Future. My first word when I walked in the first time was ‘Wow!’ It was huge and there were so many kids.

“Now I come every day to climb and use the music room and have lots of friends around me. If I feel sad, coming here cheers me up.”

I was struck by the 20-year-old’s cheeky smile when we first met in 2021. Here was a young man who doctors had given a 1% chance of surviving his disabilities but who had beaten the odds.

He liked to push boundaries and had behavioural challenges. So we made sure each session had the same rules and that he was rewarded for good behaviour, for example helping out on reception.

His mum, Marcela, says: “When Gabriel began to be more aware of his disability, his behaviour deteriorated. Future helped him understand his condition and to accept his disability. They gave me crisis management tips so that I could help calm him down at home. For example, music really helps.”

Our provision has to go beyond just being inclusive within the building. We link up with families, schools and organisations such as child and adolescent mental health services to support young people.

We want to equip teenagers to function well in society and surmount barriers to doing this.

Future recently piloted a six-week programme called the Nurture Group, which is designed to give young, disabled, learning disabled and neurodivergent people the confidence to attend mainstream senior sessions. Ciubotaru got stuck into everything.

He has thrived and is now on our Young Leader Programme, achieving first aid and safeguarding qualifications. When a younger child was hurt, Ciubotaru was adamant he wanted to stay and look after them.

The Gabriel I first met and the Gabriel I know now – the young man with cerebral palsy who took on the climbing wall and won – are very different. There is still room to grow, but I am so proud of what he has achieved.

Sereena Lewis is inclusion manager at Future Onside Youth Zone

How do people feel with learning disabilities feel about intelligence testing? How have these tests affected people’s lives? Why were they designed the way they were, and how might they have been discriminatory?

These were some of the topics explored at a Big Ideas event at the Peltz Gallery at Birkbeck, University of London, earlier this year.

Big Ideas sessions were started by researchers Nicola Grove and Jan Walmsley to open up discussion of theories that influence policy and research with self-advocates and activist researchers.

Self-advocates visited an installation by artist Sasha Bergstrom-Katz, On the Subject of Tests, part of the Psychotechne exhibition at the Peltz Gallery.

The artwork included a two-sided desk with space for exploration, engagement and interaction with materials related to intelligence testing.

Each side contained objects from historical, commonly used intelligence test kits, including those around the Wechsler Intelligence Scale for Children and the Stanford-Binet Intelligence Scales.

Each drawer contained an object from the test kit accompanied by objects, images and articles that directly connected these objects to issues including play, education, military recruitment, eugenics movements and psychology.

The artwork was designed to be interactive, and to prompt challenging discussions. Bergstrom-Katz introduced some of the objects from the tests and their histories to the group.

We learned about how intelligence testing had been linked with the dark history of eugenics in the 20th century. This classified different people according to ability and was used to wrongly justify the institutionalisation of people with disabilities or to support claims that their lives were worth less than other people’s.

In America, tests were developed at Ellis Island to discriminate against people from different backgrounds who tried to emigrate to the US. Even now, immigration questions are biased towards those who know a lot about American life.

Self-advocates discussed their own encounters with intelligence and educational testing, and the resulting separation from their peers.

We were grateful for the contributions of Sunderland People First, Ben McCay, chair of self-advocacy charity My Life My Choice, and the University of East London’s Rix inclusive research group.

Ros Weinberg, a co-researcher from the Rix group, explains: “It reminded me of when my social workers came to my house and asked me intelligence test questions like who the prime minister was and who the queen was and all sorts of different questions.

“My mum and dad would sit there thinking ‘why they are asking me these different questions?’ ”

Some participants described the anxiety or stress that testing caused. Others talked about how test results might give diagnoses that could give people the right to services and support for special educational needs, but that often it was difficult to access this support.

Many argued that the very idea of intelligence itself was flawed as it focused on one type of ability, overlooking the wide range of ways that people with learning disabilities could be involved in work and society.

Ultimately, we need to support different ways of learning and working, and traditional intelligence tests are too narrow and simplistic to help with this.

The workshop enabled us to learn from the experiences of people who have been directly affected by the policies and practices linked with intelligence testing.

This reinforces the message of the Big Ideas group: if we make complex ideas accessible and relevant, the insights of self-advocates come to the fore and are an invaluable contribution to further discussion. n

Matt Prothero is a director at Sunderland People First; Sarah Marks is director of Birkbeck Centre for Interdisciplinary Research

The exhibition was reviewed in our summer issue