Self-advocates from across London send government a message of fear, concern… and anger over benefit cuts

People with learning difficulties from across the capital have delivered a powerful call to the government over threatened cuts to disability benefits, and warned they could take “drastic” action if ministers do not listen to their concerns.

At a meeting of self-advocates in central London on Friday, members of the new London Campaign Network said they were already struggling to survive after years of austerity and the cost-of-living crisis.

They said services have been cut, while many of them were already struggling to secure the support they needed.

Government cuts to disability benefits could increase these pressures and make it harder to survive, they warned, particularly for those autistic people and people with learning difficulties who do not have strong support networks.

Those attending the meeting – the second held by the network since its launch last November – later described the event as “empowering”, “educational”, “exciting” and “informative”.

Leon Jordan, from the Generate Voices self-advocacy group in Tooting, compared the situation facing people with learning difficulties to the injustices faced by the Suffragettes who fought for women’s right to vote in the early years of the 20^th century.

He told the meeting: “That’s what we need, we need to use that weapon of the past and bring it into the 21st century now.”

He said disabled people needed to be “challenging the government” publicly, including through peaceful demonstrations.

Jordan said he was concerned about possible cuts to employment and support allowance (ESA), disability living allowance and personal independence payment (PIP).

He said: “We are angry but not angry enough to kick-start change.”

But he added: “Uniting us as we are today is a powerful step in the right direction.

“There are a lot of untold stories that need to be shared soon.

“We should all come together and write one big, strong-minded letter, a very strong-worded, long letter about how we are feeling and why we are feeling that way.”

But he warned: “If that doesn’t get results, we may have to take more drastic steps.”

Among the barriers faced by people with learning difficulties in dealing with the benefits system, those at the meeting pointed to long waiting-times; the lack of reasonable adjustments; the use of jargon; delays with Access to Work; repeated reassessments; threatening letters from the Department for Work and Pensions; the lack of benefit letters and forms in an easy read format; the scapegoating of people with learning difficulties by the government; benefit rates that are too low; and the lack of communication from MPs and people in power.

Martin Wallin, part of The Elfrida Society’s Experts by Experience: Community Consultants project (PDF), had a clear message for ministers determined to push people with learning difficulties off out-of-work benefits.

He said: “How many companies out there will employ people with learning difficulties?

“We have to live with these things day in day out, month to month. You should try living our lives for one day.”

Asked by Disability News Service (DNS) to rate his level of concern on a scale of one to 10, he said: “12.”

He said: “I am struggling at the moment. If they were to cut my PIP or ESA, there would not be enough to survive. It’s not just me, it’s everybody.”

Rodney, also from the Community Consultants project, said: “Services are not there. They are not there.”

He said he feared there would be a “ghost town” if there were more cuts because of the lack of support for people with learning difficulties, and he particularly pointed to the lack of social workers.

Another self-advocate, Faye, said she was already “just” surviving, with spiralling rent, food costs, gas and electricity bills, and medication costs.

She said: “There isn’t the information, advice and support services out there for benefits assessments and appointments… there isn’t the support services out there for people like us.”

Ian Roberts, from Speak Up Sutton, was another self-advocate at the meeting who told DNS that he was “concerned” about possible benefit cuts.

He said: “When they say they are going to make more cuts, you never know if it’s going to affect you personally.”

Andrew Lee, director of People First Self-Advocacy, which is run by and for people with learning difficulties and is the driving force behind the London Campaign Network, told DNS that the voices of people with learning difficulties “are not being heard” in the debate around benefit cuts.

He said: “Politicians are turning to parents and people that support us to find out what we want, what we think.”

He said the government had not been in touch with People First to discuss their planned cuts and reforms, and he warned that increasing moves to digitalise the benefits system created further barriers for people with learning difficulties.

He said: “People with learning difficulties need support to access the information, to know what’s going on.

“Decisions will be made on people’s benefits because people have not been able to communicate, because everything has gone online.”

Most people with learning difficulties have old mobile phones that just allow them to send texts and make calls, he said, rather than owning smartphones with internet access.

Lee said he was concerned about the impact of cuts on people with learning difficulties who have no support network.

Much of the support that was previously available has been lost since the start of the Covid pandemic, he said.

He added: “People haven’t actually got the support to say, ‘These are my support needs and this is why I need this level of support.’”

Even Labour’s failure to rule out the hugely-controversial idea of the last government that PIP payments could be replaced with vouchers showed that Labour ministers “don’t value our lives”, he said.

And he said the government’s decision to delay reform of adult social care “by having another review” suggested “they don’t want to make a decision” on how to solve the adult social care crisis.

Lee said: “Local authorities are making cuts, so a lot of self-advocacy organisations that are people with learning difficulties’ support structure are under threat.”

Raymond Johnson, also from People First Self-Advocacy, told the meeting that the London Campaign Network had been set up to help self-advocates “to work together on campaigns that matter to us all” and to “influence the people that make decisions about us”.

He said: “We have been visiting and talking to people with learning difficulties across London.

“It seems that benefits and money is the biggest concern for people right now.”

He added: “We need to stand up for our rights. Put our foot down.”

Pictures of self-advocates at the conference include Andrew Lee (bottom right), Raymond Johnson (top right, standing) and Leon Jordan (top left, holding microphone)

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