We may have learning disabilities – but we still want the same opportunities as everyone else

This week, a very important report was released by the not-for-profit organisation Social Finance, funded by The Henry Smith Charity. They found, after three years evaluating 15 organisations giving independent advocacy support for people with learning disabilities and autism, that for every £1 spent on their work, they save £12 from health and social care budgets. That’s a huge deal!

What is independent advocacy? Here in Dorset, it means meeting up with friends at Friendship Club and Speaking Up groups, organised by People First Dorset (PFD), a user-led grassroots charity. In these groups we build friendships, learn about our rights and gain confidence to speak up for ourselves and share our worries.

Socialising and speaking up can be tricky for us without the right support, so these groups are incredibly important to us. In case anyone is wondering why we need this support, as the NHS says, a learning disability means a significantly reduced ability to understand new or complex information, learn new skills and cope independently.

So, being able to speak up is important to us. Even more so when you read the evidence, that we see first-hand, of massive inequalities for people with a learning disability. For example, did you know only 6% of people with a learning disability are in paid work. We want to work but it’s tough to find employers who get us and see our skills. Even when we do get a job, sometimes it means we risk losing other help we need, like care. Then it’s a big headache, trying to navigate complicated systems within the government which are complicated and frankly, overwhelming. It’s such a battle that sometimes, even with carers or families supporting us to manage these systems, it’s easier not to work.

• Learning disability services have faced ‘drastic reduction in funding’ despite saving NHS money
• How outdated misconceptions about people with learning disabilities are holding society back

We haven’t even touched on our health yet either! In 2023, LeDeR (an NHS service which collects information about how adults with learning disabilities and autistic adults have died) discovered that 42% of deaths among people with learning disabilities could have been prevented. Then recently, the NHS said their 75% target of people with learning disabilities to receive an annual health check will be removed. That’s bad enough, but knowing that only 26% of people with a learning disability are even on the learning disability register, shouldn’t the NHS be supporting us and increasing their target?

Sometimes society can be so disabling, it’s really overwhelming. Like most people, we simply want connection, friendships, inclusion and the same opportunities as everyone else. Not all these barriers.

So, you see why People First Dorset is important to us. Their Speaking Up groups boost our confidence and empower us to take action. Over the past year, we campaigned against the closure of train ticket offices, spoke with councils about making towns easier to get around and helped members get their annual health checks. When we have a problem, we trust the team at People First Dorset and can talk with them. They listen, help us get the right support and make sure things don’t get worse. That could become very costly for health and social care services.

And while people may see us enjoying the Friendship Club, what they don’t often realise is the magic happening behind the scenes, like how it has supported me, Emily.

Like I did, many of our members still live with their families and are anxious about anything happening to ageing parents. With no plan in place, we’d face the stress of emergency accommodation and an uncertain future.

PFD secured funding so me, and three friends I’ve made at Friendship Club, could move into our own home. They guided us through the entire process, ensuring our voices were heard at every step. It was done in the right way, helping us speak with the housing association, claim necessary benefits, choose the right care provider and manage the challenges of living together as housemates. And that’s different from just being friends! Planning for the future isn’t easy, but this has made a huge difference to all of us and our families.

To sum up, there are 1.5 million people with learning disabilities and 700,000 autistic people in the UK. Unfortunately, there is no central government investment in community-led advocacy support like PFD. We are lucky that Dorset Council recognise our value and help fund our work, and now thanks to the Henry Smith Charity and Social Finance, we have proof that community-led advocacy support generates significant savings.

Our request to the government is simple. Many brilliant grassroots charities, who would have saved money, have folded as they weren’t valued. Government, please act soon and support those left. We can help you save more money. So, please read the report. Set up a fund. Make it a priority. Appoint a minister. Talk to us. Create simpler systems that work for people. We become more confident, more included and in control of our lives. And save you lots of money. That’s what it’s all about, isn’t it? A no-brainer and a game-changer!

Kerry Martin and Emily Burr both live with learning disabilities, are involved with People First Dorset and believe in the importance of being heard.

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