Self-advocacy is the ultimate preventive service – but it is under threat.

If people with learning disabilities are empowered to speak for themselves, they are more likely to live more fulfilled lives and change attitudes towards them.

The groundbreaking All Wales Strategy in 1983 was the first strategy to recognise that a learning disability is not a health condition so should not be treated in hospitals. It stated that people with learning disabilities should live “normal patterns of life in their local communities”.

The strategy also recognised the importance of the voices of parents and carers and gave them more agency in influencing policy.

However, the idea of people with learning disabilities speaking for themselves was not something that was considered back then.

That came later when activists such as Gary Bourlet introduced People First to the UK. The movement championed the fact that people could and should speak for themselves and not be subservient to those supporting them.

Over the years, All Wales People First worked hard with the Welsh government to ensure the voices of people with learning disabilities were central to groups such as the Learning Disability Ministerial Advisory Group in Wales.

The advocacy grant scheme (pump-prime funding from the Welsh government for advocacy) saw a really strong network of self-advocacy groups develop across the country. Wales led the way thanks to the faith the Welsh government had in people being able to speak up for themselves.

In 2012, when I was appointed chief executive of All Wales People First, with experience of staying in learning disability care services, I hoped to be part of a new movement that would build on the brilliant things we achieved in Wales.

Fast forward to 2024 and the advocacy grant scheme is gone and self-advocacy groups are merely existing. I find myself protesting with others in support of the Homes not Hospitals campaign led by campaign group Stolen Lives

Far from building on what we had achieved, we are regressing.

The picture is similar across the rest of the UK. People still struggle to secure meaningful employment, to maintain friendships and relationships and to be accepted as equal citizens. In that sense, nothing much has changed.

Many people are under enormous pressure to find work and face benefit sanctions if they can’t secure work. Covid-19 saw many day centres close – many remain shut.

Self-advocacy’s decline seemed to come after the 2008 financial crash. Add to that budget cuts and pandemic costs, and councils have rethought priorities. Self-advocacy appears to be desirable, not essential.

Cruelly, disabled people are being labelled as economically inactive, tarred in the media by the same brush as those who could work and choose not to.

The solution?

Whatever party forms the UK government, human rights should be sacrosanct. The government must do all it can to ensure disabled people are not demonised, not encourage an inaccurate, right-wing narrative that they are partly to blame for the economic mess.

Governments should focus on both financial and moral responsibility. Part of the latter is to make sure all citizens have a voice.

Joe Powell is chief executive of All Wales People First. Read more by Joe on the NDTi blog

Campaigners have renewed a national vision for learning disability policy with heightened urgency as Labour’s benefit crackdown threatens support.

Learning Disability England (LDE) said: “In a time where human rights seem to be on the chopping block, it’s more important than ever for Learning Disability England members to come together and have their voices heard.”

The relaunch of Good Lives took place at the recent LDE conference in Manchester. Around 500 people attended the annual event, including self-advocates, family carers, supporters, organisational leaders, researchers and policy experts. The event had a focus on diversity, intersectionality and working together.

Conference highlights included 40 speakers from small community organisations to national voluntary sector and private organisations, a cinema room showing films made by people with learning disabilities, podcast coverage by self-advocates People First Keighley and Craven and a live band.

Good Lives, a framework launched in 2022, sets out what is needed for all with learning disabilities to live a good life.

It is now more than 20 years since the groundbreaking white paper on learning disability, Valuing People, came out.

While this rights-based policy shone a welcome light on learning disability issues, there has been a policy void since then.

The Good Lives framework reflects different aspects of life and sets out what is important to people and their support networks.

People with learning disabilities and those who support them were involved in drawing up both the original manifesto and the refreshed version.

Topics include housing, communication, advocacy, love and relationships, employment and health. There are also suggestions for action.

The aim, says LDE, is that the resource “will inform policymaking by showing clearly the needs and aspirations of people with learning disabilities, enabling policymakers to develop more informed and effective policies to address these needs”.

The update includes the latest examples of good practice in support and a renewed focus on intersectionality, which LDE defines as “the idea everyone has different characteristics that make up our identities… like our age, ethnicity, religion, disability, sexuality and gender”.

There is also a new section on health, reflecting priorities such ensuring people with learning disabilities can live healthy lives and are treated fairly in healthcare.

Gary Bourlet, LDE membership and engagement lead, co-delivered a presentation on the new version at the conference.

Bourlet explained why LDE decided on a relaunch: “We always wanted to keep the Good Lives framework current and relevant to what’s happening now.

“The world is always moving so we wanted to reflect what we’ve learnt and bring new ideas for change. We wanted to reflect members’ positive work, action and impact.”

He stressed that, while LDE hosts Good Lives, the organisation does not control it. Bourlet is keen it is shaped by learning disabled people, their supporters and allies: “It belongs to the community.”

A card game that shows how people with learning disabilities can exercise their human rights is to be launched this summer.

Cwm Taf People First and the British Institute for Human Rights (BIHR) developed the Game of Rights, which will be unveiled at the self-advocacy charity’s annual festival, VIVA Fest, in Newport, Wales, in August.

“Playing the game can be both fun and educational as it will make people aware of the challenges people with learning disabilities face and the human rights they have,” according to one member of Cwm Taf People First, Stuart (he prefers not to share his surname).

Foundation for justice

Cwm Taf says developing the game provided “a foundation for us to champion human rights better in the future and to ensure that people with learning disabilities are not forgotten, overlooked or devalued when accessing and interacting with public services”.

The easy read game uses real-life stories from Cwm Taf members and from BIHR’s work. The goal is for players to decide which human rights apply to each story. For example, the act’s article 8 on the right to private life supports people’s rights to be involved in decisions that affect their lives.

Each player has a counter and a variety of cards are laid out, each representing a specific human right.

As scenarios are read aloud, players decide which card best matches the situation, placing their counter on it.

Points are awarded to those choosing the most appropriate human right, which also sparks discussion.

BIHR first shared the Game of Rights at its Human Rights Day event in parliament in December last year. It says the project is timely given the threat to disability benefit.

Chief executive Sanchita Hosali explains: “The plans to shake up welfare are likely to have a real impact on disabled people’s human rights, risking the support that allows people to live independently and with basic dignity.

“The better people understand their rights and the duties on government to uphold these, the better equipped they are to hold public power to account – whether that’s through responding to or challenging consultations or having direct conversations with decision-makers.”

The project was part of BIHR’s broader community programme, which involved collaboration with groups across the UK between 2021 and 2025. The aim was to support organisations to use human rights law to address social justice issues.

BIHR chose Cwm Taf People First as a partner because it had a clear, creative vision for how to teach people about their rights.

The better people understand their rights and the duties on government to uphold these, the better equipped they are to hold public power to account

Alongside the game, Cwm Taf has developed podcasts, radio shows, songs and TikTok videos around human rights.

The game took six months to produce. Cwm Taf had the idea of using a fun card game to teach people about their human rights, and worked with BIHR to make it entertaining while also informative.

The project involved online and in-person workshops, a development phase with regular online check-in meetings and a testing session in person in the Cwm Taf offices.

BIHR heard from some of the Cwm Taf members about their favourite games.

Cwm Taf play-tested the first version of the game; around 12 people attended the testing session. BIHR also visited Cwm Taf to play the final version together.

Awareness of human rights is low even among the general public, and BIHR advocates making them a part of everyday conversations.

Hosali says: “The Game of Rights and our other resources are designed to support people to have human rights conversations outside the courtroom.”

The cost of living might be biting but, in north Oxfordshire, there’s still one place a drink with friends is affordable: a pint at Banbury local Cheers M’Dears will set you back only £3.50.

The pub, with a games room and with plans for a sensory garden this summer, is open three times a week at the Banbury Community Support Service day centre.

The centre, run by Oxfordshire County Council, supports 22 people a day. When a large room within it came available, people were unanimous – they wanted to transform it into a pub.

Oxfordshire is full of country pubs, but people did not always feel welcome or able to relax in a traditional boozer.

So the team (the centre has 21 workers) and those they support agreed to create a welcoming, pub-style space inside the centre.

A social media fundraising campaign brought in donations of cash and pub furniture and the doors opened in July 2023.

“What they really wanted was to have karaoke, have a dance, have a drink – they just wanted to have fun,” explains Jen Farrell, manager of Banbury Community Support Service.

“So we’re inviting people into our spaces, where our community can absolutely be themselves without any judgment whatsoever.

“The response we’re getting is that they’ve never been to a pub where they’ve felt so welcome or where they’ve had so much fun.”

The pub, which can hold up to 30 punters, tackles social isolation. According to research organisation the Belonging Forum, one in five people living with disabilities experiences loneliness and a quarter report never going to a pub, bar or coffee shop with friends.

Socialising can be difficult for young people with a learning disability, with one in three spending less than a single hour outside their home on an average Saturday, according to Mencap.

The bar is open every Friday to all comers and once a month it hosts a pub lunch, serving fish and chips, sausage and chips and other popular pub grub. Alcohol is served on special occasions like birthdays; most drinks are non-alcoholic.

“When you walk into that room, you’re not in a day service,” Farrell says. “It’s broken down all these barriers. It’s bringing the night into the day.”

The Cheers M’Dears pub has been instrumental in reducing feelings of isolation and infantilisation. One woman who had a stroke eight years ago had not felt confident to be out of her home, but now visits the pub every week.

“She’s got other people in her situation who can relate to how she’s feeling, and that really breaks down the loneliness and isolation,” Farrell explains.

As another puts it: “I like going to our pub room on a Friday. It lifts my spirits to be with my friends and it always feels fun and safe.”

Becoming a publican

Learning the tricks of the pub trade has been transformational.

One woman who had needed two-to-one support during her visits to the day centre said it was her passion to work behind a bar.

“At first we thought: how is this going to work? She found the world very difficult and had difficult behaviours. But we didn’t see it as a barrier,” says Farrell.

The team showed her to learn how to make drinks, handle money and operate the till. Training took two months and, initially, she needed a lot of support. Now, the structure of the work and the responsibility have boosted her independence.

“She’s no longer supported two-to-one during the week, she’s now volunteer working in another cafe and she works independently at the bar on a Friday,” says Farrell.

“If we can give one message, that is: do not concentrate on what someone cannot do – advocate for what that person can do.”

Hannah Fearn is a freelance social affairs journalist

“We’re never going to see Maddie again,” Julie says, her voice cracking.

Julie works at a children’s home in the south where Maddie has lived since she was 13. Julie has just returned from the final transition visit to Maddie’s next home.

Maddie, who has severe learning disabilities and autism, has lived in the same home and attended the same school for six years. She has been surrounded by all those who know her best.

But at 19, she is moving from children’s to adult social care and her new home – new staff, new peers – is two hours away.

Alongside Julie’s understandable grief is an assumption that Maddie will neither return to nor remain connected with the home or people she has grown up with and who have loved her.

I met Julie and Maddie in my role as a specialist consultant supporting individuals with learning disabilities and the people caring for them.

Around 20,000 young people with learning disabilities will finish education this year and some, like Maddie, will continue into adult social care.

In 2023, the government issued a report, Children’s Social Care: Stable Homes, Built on Love.

Its opening statement reads: “Our aim is to create a children’s social care system which prioritises love and stability for children and families relentlessly.”

But it was not relentless; Maddie’s transition into adulthood has been the all too common scrabble for a good enough placement – wherever it could be found and, crucially, whoever it is with. For Maddie,  love and stability have relented. Abruptly.

Shortly after Maddie moved, the transition cogs began whirring around another young person, Adam. The 18-year-old, who is severely autistic and has a learning disability, had also lived in a children’s home since his early teens. His distress had escalated in recent years but he was supported almost exclusively by three specialist staff who grew to know, trust and love him.

They described him in an ordinary, familial way, with great fondness. “He’s changed me,” one said. “He’s helped me understand things, including myself, differently.” Another simply said: “We love him.”

These relationships, built on love and stability, helped Adam heal from his distress. One option for Adam’s adult home was to continue to be cared for by these three staff.

It was not the cheapest option but the best one. Yet this was not obvious to everyone.

So those around Adam – family, team, managers, specialists – fought for what seemed obvious. The strain of moving to a new home in a new area would be eased if Adam retained the support of those he trusted.

If he moved to a new place and simultaneously lost those who loved and cared for him, how would he fare? How would anyone?

In the end, we could reach only a compromise with local adult social care commissioners: those who loved Adam would phase him into his new home without any guarantee they could stay in his life.

This isn’t good enough.

Trauma risk

Love, relationships and stability are not yet at the heart of transition. Instead, moving home for young people like Maddie and Adam is recognised as a challenging life event, which can lead to a trauma response.

The “relentless” pursuit of love and stability should not have an age limit.

For young people with learning disabilities – who have much higher rates of trauma than others – love and relationships need to be at the heart of transitions.

This does not feel radical – it is simply what Adam and Maddie wanted, and what any of us would want.

Names have been changed 

Beverley Samways is founder of consultancy Unique Connections

Great live music makes me feel alive and in the moment. Pop and RnB are probably my favourite types of music. It’s great when you get to see someone live.

I first heard about the charity Stay Up Late when founder Paul Richards gave an interview to local magazine The Hovarian. I saw that and decided to get involved.

The first thing I did was become a gig buddy (this is where Stay Up Late pairs up people with and without learning disabilities in Sussex to be friends and to go to events together). I then became a Stay Up Late quality checker. This is someone who visits supported living homes to see what their support is like. Now I’m also an ambassador so I’m pretty well involved.

Stay Up Late went to Glastonbury for 10 years. In 2024, it changed things a bit, and attended a number of smaller festivals more local in Sussex with the hopes of making it more affordable and accessible for more adults with learning disabilities and/or autism.

I first went to Love Supreme in Lewes in 2023. I went with my parents and I thought it was nice, a relaxed festival that was accessible. I recommended Stay Up Late should go to Love Supreme as a group.

Going to the festival with Stay Up Late last year was a different experience because I went with the other gig buddies in a group instead of with my parents. I was with 26 others, including three staff members. It was much better, it was more fun and I really enjoyed myself.

Also, we got the train and then a coach together – that was really fun. Going with gig buddies is the best way to go to a festival because you get to see people with disabilities doing things they want to do – it makes me happy to see that.

I can’t remember the names of any bands I saw at Love Supreme last year, but the music was really good. There were lots of different tents and stalls, and I thought the price was OK for what you got.

Food and drink were nice, with lots of choice. One stall had a machine that took both cash and card, so that was good for people with disabilities to use but it was a bit strange giving your order to a machine instead of a person.

The negatives were that there was no phone signal, so it was really hard to meet up with friends because you couldn’t message or call them. Leaving at night was also a bit tricky – the bus back to the train station was really packed. It also got very cold. The weather wasn’t very good for July, so we left earlier than I would have liked.

The festival was quite accessible, even though in some places it was very busy. There was an access tent but I didn’t use it. Overall, the festival site was laid out well with plenty of space which was good for access.

The best thing about smaller, local festivals is that they are less busy and you can enjoy the area and the music more. I think more people could go which was good and made a more fun experience.

My tips for someone who wants to go to a festival but is nervous is to go with people you feel safe with. It makes bits like travelling easier, as you’re in a group having fun. Try a small one to start – there are less issues with crowds. I’d also say prepare and find out which music you’d like to see and focus on that – it can then feel really exciting.

Rohan Lowe is a Stay Up Late assistant and was supported to write this piece