What does it mean for people living with SMA?
In July 2024, SMA UK responded to the first stage of Personal Independence Payments Green Paper Consultation. Personal Independence Payments Green Paper Consultation – What SMA UK said – SMAUK.
The proposed reforms to the PIP system announced on 18th March, and set to launch in November 2026, seem to protect the benefits for those living with long term physical conditions like SMA.
As a long-term condition, it is unlikely that people living with SMA will be impacted by the tightening of PIP eligibility. However, SMA UK will watch as the details around the new processes emerge and will contribute to the second phase of the DWP consultation.
It is good news that PIP payments will rise with inflation, especially given the current cost of living, and we are pleased to see that there is no sign of the threatened voucher scheme!
With a return to more regular face to face assessments, we can hope that people living with SMA will find a more appropriate and individualised level of support. We can be cautiously optimistic that people living with severe long-term conditions may not need regular reassessments. SMA UK will be keeping a close eye on how this plan develops, as it is important that reassessments can be requested and followed up in a timely manner.
The DWP is asking for feedback on how the PIP assessment process can be improved, with help from disabled people and organisations through a second consultation phase; Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper .
SMA UK’s response to this consultation will be shaped by the views and opinions of the SMA community. Watch this space to find out how to contribute your perspectives, or submit an individual response here Pathways to Work: Reforming Benefits and Support to Get Britain Working.
Key Announcements
Tightening PIP eligibility rules
The Green Paper talks about changes to the points-based system used to decide how hard it is for people to get around and do everyday tasks.
The daily living part of PIP has 10 areas. These include things like being able to cook, wash, or make decisions about money. The mobility part looks at how well someone can get around and has two areas.
Right now, people can get the standard rate of PIP if they score between 8 and 11 points in total across all categories. If they score more than 12, they get the higher rate. The yearly PIP payments can range from £1,500 to £9,600.
But from November 2026, people will also need to score at least 4 points in one area to qualify for PIP.
This change means that if someone needs help to cook a meal, they can qualify, but just being able to use a microwave won’t be enough. This change might also mean that some people with mental health conditions or less serious physical problems might not qualify for PIP anymore.
Increasing PIP with inflation
Before the Green Paper, there were reports saying the Government might freeze the PIP rate, which would have meant lower payments for claimants in the future.
However, Liz Kendall, Secretary of State for Work and Pensions, confirmed that PIP payments will continue to rise with inflation, so this won’t happen.
This is good news for claimants, as freezing payments would have meant a big cut to their money.
Kendall also said the Government won’t start means-testing for PIP because “disabled people deserve extra support, no matter what their income is.” He also confirmed that PIP wouldn’t be replaced by vouchers, as some people had suggested.
Increased benefit reassessments
The Work and Pensions Secretary said that, with new welfare reforms, people who claim sick or disabled benefits will have to go to more face-to-face reassessments.
These changes, along with higher PIP thresholds, are meant to encourage more people to leave benefits and try to get back to work if their health allows it.
It also aims to fix the drop in reassessments after the pandemic. A report showed that fewer people are leaving incapacity benefits, and only a small percentage move off it and into work each month.
The government hopes that if reassessments go back to how they were in 2021, it could save around £600 million.
Kendall said that the reassessments were not restarted after the pandemic, so face-to-face checks have dropped a lot, from 7 out of 10 to just 1 out of 10. The government plans to bring them back in full and make sure they’re recorded to show that they’re being done right.
But no reassessments for the most serious conditions
Kendall also said that people with permanent or worsening health problems might not need to go through reassessments. This is to give them confidence and dignity, focusing on people with less severe conditions instead.
Cutting incapacity benefits
Kendall confirmed that part of the welfare changes will cut the highest rate of incapacity benefits, which is the extra money added to universal credit for people with “limited capability for work-related activity” (LCWRA).
Right now, people in this group get an extra £5,000 a year and don’t have to look for work. Around 1.8 million people are in this category, which has grown a lot since the pandemic.
The goal is to encourage people in this group to move to the basic rate of universal credit, which would push them to start working.
From April 2026, the extra payment for people in the LCWRA group will be frozen at current levels for those already receiving it and will be lower for new claimants. Meanwhile, the basic universal credit amount will go up more than inflation, meaning claimants could get £775 more by 2029/30.
People with long-term health conditions will get an extra “premium” on top of their universal credit, but the amount hasn’t been decided yet.
Stopping incapacity benefits for young people
Kendall also said the government is considering delaying incapacity benefits until people turn 22. This is to stop people from going straight from school to claiming benefits.
The idea is to help young people not in education, employment, or training find work or study opportunities. Official figures show a big increase in young people claiming incapacity benefits since the pandemic.
This reform aims to use the savings from this change to provide more support and training for young people to help them get jobs. It will work alongside the government’s “youth guarantee” program, which ensures all young people can access education or training to help them get a job.
Reforming work capability assessments
Kendall also said that the government plans to remove the work capability assessment (WCA) in 2028. Right now, the WCA is used to decide if someone with universal credit has a health condition or disability. Instead, the PIP assessment will decide if someone gets extra support through universal credit.
Kendall said the WCA is too complicated, stressful, and based on a simple “can work or can’t work” idea. The truth is that many people’s health conditions change over time.
A consultation to reform the WCA was started by the Conservatives but was delayed because the High Court said the process was unfair.
“Right to try” guarantee
To address concerns, Kendall announced a new “right to try” guarantee for people getting health-related benefits. This will stop their benefits from being automatically reassessed if they try a job.
Kendall said this will give people more confidence to try work without worrying about losing their benefits if it doesn’t work out. A survey found that 200,000 people on health-related benefits would be willing to work if the right job or support was available.
Consulting on new employment insurance
Kendall also announced that the government will consult on a big change to benefits for people who have worked before. This would merge jobseeker’s allowance (JSA) and employment support allowance (ESA) into a new unemployment insurance. People who have paid into the system would get £138 a week for a limited time.
This reform aims to give better support for people who recently lost their job while making sure they still need to look for work, though there will be some flexibility for those with health conditions. After the time limit ends, people can apply for universal credit if they are still unemployed.
This change also connects to the removal of the WCA and would help people with short-term health problems who might not qualify for PIP.
