The UK Government has written a new plan called “Pathways to Work: Reforming Benefits and Support to Get Britain Working“. It was published on March 18, 2025, and it talks about big changes to benefits for disabled people or people with long-term health problems.

The Government says the changes will help: 

• More people get into work 
• Make the benefits system simpler 
• Make sure the country can afford it 

We have summarised the key points below. Please read through and let us know what you think using our consultation form at the bottom. We will use your feedback in our submission. 

Main Changes the Government Wants to Make 

1. Removing the Work Capability Assessment (WCA): Will be removed in 2028 or 2029 without consultation.

• This test checks if someone’s health or disability means they are unable to work. 
• A new system will use questions from A new system will be based on the daily living questions from the current Personal Independence Payment (PIP) assessment 

2. Changing Personal Independence Payment (PIP): Starting November 2026 without consultation 

• To get the daily living part of PIP, you will need to score at least 4 points on one daily living activity section and score a total of at least 12 points across all the sections.  
• People with the most serious, life-long illnesses won’t have to keep being reassessed. 
• More people will be asked to go to face-to-face assessments (many will be virtual) , during this time. 

3. Changes to Universal Credit (UC) 

Starting for NEW CLAIMANTS from April 2026 without consultation. 

• From April 2026, new claimants will get less money in the health part of UC – only £50 a week. 
• People already getting it will keep the current amount (£97), but it will be frozen (not increased) until 2029/30. 
• The basic UC amount (called the Standard Allowance) will go up by £7 a week by 2026/27. 
• The government is thinking about stopping under-22s from getting the health part of UC until they turn 22 . They suggest that these young people will be offered expanded work and training opportunities.  

4. New Unemployment Insurance 

• This will replace the old ESA and Jobseeker’s Allowance (JSA). 
• It will only be for people who have paid National Insurance. 
• It will be time-limited, meaning you’ll only get it for a short while. 

5. “Right to Try” Guarantee 

• A new law will let people try going to work without losing their benefits straight away. 

6. Better Employment Support 

• The government will spend £1 billion more each year by 2029/30. 
• People will get one-on-one help to find jobs or improve their skills. 
• New “Support Conversations” will help people talk about what kind of work they could do. 

7. Helping Employers 

• The government will look for ways to help workplaces become more accessible for disabled people. 

Who Will These Changes Affect Most? 

1. Disabled people already getting benefits 

• If you get PIP or UC now, when it is time for a review, you might have to go through new assessments. 
• Some people may lose money if they don’t meet the new rules. 
• But if you have a very serious, long-term illness, you might benefit from not being reassessed again. 

2. Carers 

• If the person you care for loses their PIP, you might also lose Carer’s Allowance or the Carer Element in UC. 

3. Young people with disabilities 

• If you’re under 22, you might have to wait longer to get extra money through UC. 

4. Unemployed people 

• People who have worked and paid into the system will get the new Unemployment Insurance, but only for a short time. 

5. Employers 

• Businesses may be asked to do more to help disabled people get and keep jobs. 

 What Are People Worried About? 

• Losing money: Stricter rules could mean some people lose benefits, even if they still need help. 
• More poverty: The changes could make life harder for many people and families who are reliant on the financial support PIP provides.  
• Stress: Reassessments and changes can cause anxiety, especially for people with long-term illnesses. 
• Carers losing support: If someone loses PIP, their carer might also lose support. 
• Confusing system: Changing both UC and PIP at the same time might be confusing and feel unfair. 
• Unfair for young people: Disabled young people may have to wait until 22 to get financial support. 

 When Will These Changes Happen? 

Some things will happen soon or are still being talked about, like: 

• How to help people who lose PIP in 2026 
• Support for young people under 22 
• Helping employers 
• Details of job support services 

Other things will go ahead more directly, like: 

• The new 4-point PIP rule in November 2026 
• Scrapping the WCA in 2028/29 
• Freezing or cutting parts of UC 
• Bringing in Unemployment Insurance 

What Could Happen to People with Long-Term Disabilities? 

• Some people might lose benefits under the new PIP rules. 
• Others may get less money from UC, especially new claimants. 
• People with serious, lifelong illnesses might have some good news because they won’t need to keep going to assessments. 
• Trying to work might be less risky with the “Right to Try” rule. 
• Pressure to work and less money could make life harder. 
• Risks of impact on mental health, poverty, and losing access to support services like free transport or the Motability scheme. 

Final Thoughts: These changes could help some people but may also make life harder for others, especially: 

• People with less visible or changing conditions 
• Unpaid carers 
• Young disabled people 
• Those who become unemployed after working 
• The Government says it wants to support those who really need it and help more people find work. There is a risk that some people may lose vital support. 

We used AI to assist us with this summary. It was checked for accuracy by members of our Advocacy, Information and Support teams. 

Benefits Reform | 19th March 2025 Update – SMAUK

SMA UK have listened to the SMA Community and responded to the consultation questions asked by the Department of Work and Pensions. Thank you to all who have contributed to what we said.

Read more >

In collaboration with Pro Bono Economics, the Children’s Charities Coalition has launched a new report on children’s services spending.

The analysis has revealed that, despite a small rise in the last three years, local authority spending on early intervention services in England has fallen by more than £2 billion since 2010/11.

This constitutes an overall drop of 42%, with spending per child having fallen by more than half. At the same time, local authority spending on residential care placements has continued to balloon.

Worryingly, this has disproportionately impacted the most deprived parts of the country, where spending per child has fallen by more than 50%, whilst the least deprived areas saw a drop of less than 30%.

The Children’s Charities Coalition is therefore urging the Chancellor to use the upcoming Spending Review to make serious long-term investment in children’s social care.

Doing so will allow local authorities to rebuild early intervention services and prevent more children and families from reaching crisis point.

You can read the full report here. A long road to recovery- CSFA April 2025

The charity Contact launched its campaign which we shared with the SMA Community for families to get involved.

Read more >

June 2024

In the run up to the General Election, Genetic Alliance have launched their Pledge for People with Genetic, Rare and Undiagnosed Conditions campaign calling on all candidates to say:

If I am elected, I will support people living with genetic, rare and undiagnosed conditions by:

• Helping people get a timely and accurate diagnosis
• Raising awareness of these conditions within the NHS
• Ensuring people have access to coordinated care
• Improving access to specialist care and treatment

As members of the Alliance we have asked the SMA community get behind the campaign and contact their MPs.

Read more on the Genetic Alliance website >

As members of the Disabled Childrens Partnership we are delighted to share the launch of their 2024 manifesto.

They are calling on the next government to:

• Make disabled children a priority. Those at the heart of politics need to prioritise the needs of disabled children and their families and to acknowledge disabled children and their families as equal, valued members of society. We want all parties to commit to the appointment of a Minister for Disabled Children and to producing a cross party disabled children’s strategy. 
• Clarify and enforce rights, and review the law. The next Government must commit to stronger accountability within the SEND system; to making the education system inclusive; and to ensuring that disabled children and young people receive the support they need across the education, health and social care systems. 
• Address funding shortfalls and create a dedicated fund for disabled children. Making disabled children the priority and having a system that is fit for purpose with effective accountability will help make this happen; but the right level of funding is also vital.

You can read the full manifesto here

Or download a copy DCP MANIFESTO 2024

As supporters of the campaign, we wanted to share with you our recently published joint statement following Labour’s pledge to tackle child health inequality.

This is an important development, and we welcome Labour’s focus on tackling child health inequality and the recognition that a child’s wellbeing is shaped by their mental health as well as their physical health.

Launch event 24th January 2024

The event was hosted by Tim Loughton MP and Emma Lewell-Buck MP, with a moving speech by Baroness Floella Benjamin, and was attended by 27 young people from across the UK.  We were thrilled to bring young people to Parliament to engage with high-profile political decision-makers at a really inspiring event.

How you can support this campaign

Ahead of an upcoming general election, the UK’s five leading children’s charities – Action for Children, Barnardo’s, The Children’s Society, the National Children’s Bureau and NSPCC – have joined together, to make sure the next government has a plan to make decisions for babies, children and young people with children at the table.

Read what you said and we reported >

At SMA UK we understand that disabled individuals and their households have, on average, lower incomes than their non-disabled counterparts.

Often incurring additional costs related to their treatment and disability as well as spending more on energy, travel and the current surge of inflation.

We are working with partners to raise awareness of the issues facing the SMA Community:

• Contact – Out of Energy Campaign 
• Muscular Dystrophy UK – Cost of Living Report
• Scope – Cost of Living Crisis 

Kim Gabriel, mum to Rocco, aged 5 who has SMA Type 1 and lives with his four siblings, has really felt the impact of the rise in the cost of living. With her energy bills more than doubling, she has had to rely on charitable support to keep up with the demands of her growing family as well as Rocco’s complex needs:

“The cost of living has never affected vulnerable families more, my child is reliant on five life-saving machines every night, if I can’t afford to pay the bills what do I do?

I have had to cut down on my food shopping and family days out would be a thing of the past if it wasn’t for the support of our local children’s hospice and charities.”

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Independent living is being made more difficult with the added pressure from the rises in the cost of living. As Adele Farquhar told us:

“With my personal assistant, I always have two people in the house, using more energy, water and food than I would if I was a single woman living without a disability.

SMA comes with specific challenges, I can’t just layer up if the house is cold as it impacts my mobility and, of course, I can’t get up and move around more to keep warm so I have to have the heating on.

My energy costs have doubled, and I can’t not use my mobile hoist or my profiling bed, and, I have to charge my powerchair. It feels like because we are in the minority, the government don’t appear to have thought carefully enough about the disproportionate impact the cost of living has on the disabled community.”

Over 1,000 people took part in Genetic Alliance UK’s survey about the impact of living with a rare condition which were published in BMC Health Services Journal. The findings were stark, and enabled them to develop specific recommendations for improved support.

Read the online report >

Read the pdf report >