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National Strategies, Campaigns and Consultations

National Strategies, Campaigns and Consultations

We work closely with the SMA community and many partner charities monitoring Government strategies, reports and plans .  We bridge the gap between people living their lives with SMA and the organisations that can make a difference. Many issues impact on all the disabled community. We run surveys and collate experiences and let the community know about consultations they may wish to respond to directly.

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

The next few months are important. You can read our summary below and share your their thoughts on these plans:  

You can support our partner charities:

  • The Cost of Cuts Campaign > Scope’s petition calls on the government to use its SEND reform to create a more just and fairer system of support for disabled children and families. 
  • Stop the cuts campaign > send Contact’s template letter to your MP to stop the proposed Universal Credits cuts for disabled young adults 

Summary of Proposals

The Government says the changes will help: 

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

Let us know what you think using our consultation form at the bottom. We will use your feedback in our submission. 

The Main Changes the Government Wants to Make

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

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 are 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. 

The next few months are important. You can read our summary below and share your their thoughts on these plans:  

You can support our partner charities:

  • The Cost of Cuts Campaign > Scope’s petition calls on the government to use its SEND reform to create a more just and fairer system of support for disabled children and families. 
  • Stop the cuts campaign > send Contact’s template letter to your MP to stop the proposed Universal Credits cuts for disabled young adults 

 

Previous Updates

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 >