Building a social security system fit for people with a learning disability

Self-advocates from Mencap’s Voices Council have outlined their vision for the future of the social security system for people with a learning disability in England and Wales, along with practical ways to improve support.

They want to meet with the Government to discuss the involvement of disabled people in decision-making and to shape plans that encourage employers to hire more individuals with learning disabilities.

The Council also wants to discuss the negative impact of the language used around benefits, which makes people feel reluctant to apply for what they are entitled to. It was one of the reasons why the group decided to use the term ‘social security’, because it makes them think of being part of society and their rights as individuals. Whereas ‘benefits’ are often thought of as a perk or an extra, creating the idea that people are receiving money for free.

They say that it is essential that the Government changes its language so that it speaks about disabled people with more dignity and respect.

The future of social security

The welfare system is currently undergoing enormous changes, and there is a lot of uncertainty about how the Government will resolve it. The Voices Council has identified five key themes that, if addressed, could lead to positive solutions. These are:

Living and coping with negative experiences/knockbacks
What is the right support?
How do you find work opportunities?
How accessible is the system, specifically the Department for Work and Pensions (DWP), and how is accessibility embedded?
How do supporters interact with the benefits/social security system, and how successful is this?

The group of 12 self-advocates has raised several important questions for the Government. These questions include: How many Disability Specialist Job Centres are there? What percentage of staff has received training on learning disabilities? How will the government assist more employers in achieving Disability Confident status?

In addition, they want to know how many people with a learning disability have switched from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) or from Employment Support Allowance to Universal Credit, and whether they received support to do this.

They would also like people with a learning disability to have fewer reassessments for social security because a learning disability is lifelong and will not change.

What are the changes to the social security system?

Last March, the Government published a Pathways to Work Green Paper and launched a consultation about changes to disability benefits. The green paper aimed to increase employment among people who receive health and disability benefits.

The white paper due soon should include proposals to remove barriers to employment, support people who lose entitlement to PIP, and consider delaying access to the universal credit health element until age 22. This is based on switching resources into an expanded Youth Guarantee and raising the age at which people can claim PIP.

Some of these proposals were included in the Universal Credit Bill, which passed in Parliament on 22 July. The universal credit standard allowance will increase every year until 2029/30, but the health element will be halved and frozen for new claimants from April 2026. People who claim this benefit after April 2026 will get about £217/month (about half of what current claimants get). This will not go up every year.

Initially, the Universal Credit Act 2025 was to include plans to restrict eligibility for PIP so that fewer people could claim it. Yet as a result of campaigning from disability groups, the UK Government removed the planned cuts to PIP from its Bill.

Anyone currently receiving PIP will be able to continue claiming as usual. It also means that people due for reassessment or claiming for the first time before Autumn 2026 will be assessed under the same criteria as before.

There will now be a review of the entire PIP assessment process led by Minister for Social Security and Disability Sir Stephen Timms to “ensure the system is fair, supportive and reflects the realities of modern life.”

The Government says it will be co-produced with disabled people and the organisations that represent them, with the core objective of delivering better experiences and outcomes for disabled people and those with health conditions.

The review will consider the role of the PIP assessment, the assessment criteria, and whether any other evidence should be included alongside the functional assessment to fairly reflect the impact of living with a long-term health condition or disability.

Why is PIP being reviewed?

The review aims to address the changing picture of population health over the last decade, including the rising prevalence of long-term health conditions and disability among the working-age population.

PIP was first introduced in 2013 to replace DLA for adults. It is now over a decade since the assessment criteria were designed, and much has changed during that time. While there have been two independent reviews of the PIP assessment in 2014 and 2016, these focused on the quality and consistency of decision-making and the claims process. The assessment itself has never been thoroughly reviewed.

There are now close to 10 million working-age people who are disabled (23%), and this number has grown by nearly 3 million since 2013/14. There have been greater increases in the prevalence of disability among young people and a rise in mental health conditions.

In addition, research shows that many people with a learning disability describe the PIP application process as inaccessible and stressful, with complex forms, poor communication, and assessments that fail to account for the support needs of people with learning disabilities, especially for those without specialist advocacy or support.

Therefore, it is a good time for the Government, people with a learning disability, and their families/carers to work together to create meaningful changes to the social security system.

Addressing extra costs faced by people with learning disability

These changes should include checking that PIP payments are sufficient and meet the needs of those with a learning disability. Bryony, a Voices Council member, highlighted some extra costs she needs, such as the additional expense of having someone accompany her when she travels and the limitation of wearing certain types of shoes, which restrict her options.

She added, “I have extra costs on medication, medical products, and personal assistance. I have additional food costs because of dietary requirements, higher water bills because of more frequent showers, and I can’t drive, so I have to pay for taxis. I also get Universal Credit and combine this with my benefits to cover my extra costs. Without PIP, I’d have to rely on my parents for everything. PIP gives me independence while keeping me safe in whatever I’m doing.”

A recent Mencap survey of people with a learning disability also highlighted the profound impact that cuts to PIP would have had on respondents, had they not been removed from the Universal Credit and PIP Bill. An alarming 70% of respondents revealed they would have needed to cut down on food if they lost PIP, while over half (60%) said they would have needed to cut back on heating and nearly half (45%) were worried they would have been unable to leave their home.

Access to Work

Mencap say that many of the 1.5 million people with a learning disability in the UK want to work, but need support such as Access to Work to start, stay, and succeed in employment.

However, the latest statistics show that the processes in place to support people with a learning disability simply aren’t working.

The Voices Council say that there are long delays, complicated processes, and increasing cuts to support. This means that capable people are being pushed out of the workforce because they cannot get the support they need.

They have heard that some people can wait over a year for an Access to Work application to be accepted. Or, if they need to change their Access to Work, the process can take months to complete and for a reply to be received.

The group want the government to fix this and then grow Access to Work so more people with a learning disability can get the support they need.

The work environment and learning disability

The Voices Council says a safe and supportive work environment for anyone with a learning disability includes having a work culture which accepts reasonable adjustments as standard, communicates in plain English (verbal or written) with potential employees and prevents any possible biases where false assumptions about someone’s ability influence decisions.

They say several factors can make it easier for people with a learning disability to work. The first is encouraging employers to have an accessible recruitment process, including accessible job application forms.

Employers also need to ensure a supportive environment for people with a learning disability, supported by a strong reasonable adjustment programme that recognises these adjustments will vary for different disabled people.

People with a learning disability in England who have an education, health and care plan can get support to transition and work experience through programmes like supported internships. The self-advocates want these programmes to lead to more paid job offers.

They also believe that the Government should end the work capability assessment and stop deciding who is ‘capable of work’ and who is not. As some people may struggle to work full-time hours, they may need a universal credit top-up if they want to try working part-time.

Accessible DWP and social security

Another key issue for the Voices Council is the accessibility of the system and the DWP. They say that communication with the DWP can be challenging, and lots of the services are based online, which excludes some people with a learning disability. They may need more support to use these services online or may not have internet access.

In addition, they believe that the DWP should inform people with a learning disability about a call in advance to reduce anxiety and prevent the call from being unanswered because it is flagged as a spam call.

The Council stated that it is aware that people have been sanctioned for not responding to the DWP or complying with their requests. For example, they may miss an appointment due to public transport problems or a lack of support to get to appointments. They added that worrying about sanctions makes some people afraid to seek support or help in finding a job. They, therefore, propose that people with a learning disability are to be exempt from any benefit-related sanctions.

The Vision Statement in practice

Council member Jack Welch added, “One of the biggest flaws is with communication. We know assessors are beginning to be trained on learning disability, but we know that they can do more to understand the needs of people with a learning disability.

“This is especially important when many of the services and information is only available online, like the Universal Credit journal, which excludes a large number of people who have little or no access to technology. These are concerns which we need to understand more about what the DWP is doing to support people in using technology and to become more confident. We had several other considerations, like whether PIP should be linked to National Insurance contributions, which will give more financial security to those who claim this when not in employment.

“Crucially, we need to change how the system is talked about and how it is understood by the wider public. Hopefully, this Vision Statement helps to set our vision as the Voices Council on what can be done. ”

Alison Bloomer

Alison Bloomer is Editor of Learning Disability Today.

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