Thousands of disabled young people could face major changes to their benefits under proposals reportedly being considered as part of the Milburn Review. But what could this mean for SEND families, and why are we concerned?
At AskEllie, we’ve spent the past year and a half listening to families who are struggling to secure the education, support and services their children desperately need.
Now, a new debate is emerging that could have significant consequences for disabled and neurodivergent young people approaching adulthood.
According to BBC reporting, an upcoming review led by former Labour Cabinet minister Alan Milburn is expected to recommend major changes to disability-related benefits for people under 25.
These could include changes to Personal Independence Payment (PIP) and the health element of Universal Credit, potentially leaving some young people receiving less financial support than they currently do.
But these are reported recommendations, not confirmed government policy. No decision to remove PIP from all under-25s has been announced.
And here’s why this story is particularly important to us.
We recently sat down with Alan Milburn himself to discuss the growing number of young people who are not in education, employment or training, and the failures that can contribute to this.
What he told us raises some important questions about how any future benefit reforms should work.
What is the Milburn Review?
The Milburn Review is examining the growing number of young people classified as NEET — Not in Education, Employment or Training.
The issue affects approximately one in eight young people aged 16 to 24, according to figures discussed in the reporting.
Many of these young people face significant barriers to employment, including disabilities, mental health difficulties, a lack of appropriate educational provision and limited opportunities for training.
The review is intended to explore how more young people can be supported into education, training and employment.
But reports about possible changes to disability benefits have understandably raised concerns among families.
What changes to PIP and Universal Credit are being reported?
According to the BBC report, the review is expected to consider recommendations that could significantly change the benefits available to young people under 25.
The reported proposals include:
- Replacing access to the existing PIP and Universal Credit health-related arrangements for many under-25s with a different system of financial support.
- Introducing a youth allowance based on the standard rate of Universal Credit.
- Providing an additional allowance for some disabled young people to help with disability-related costs.
- Creating separate, higher-level financial support for young people considered severely disabled and unable to work.
- Linking some financial support to participation in appropriate employment-related activities.
Reports suggest the proposals could affect both new applicants and some existing claimants.
However, important details remain unclear, including eligibility, exemptions, transitional protections and the amounts young people would receive.
It is essential to distinguish between a recommendation made by an independent review and a policy the Government has formally adopted.
Families should not assume their current PIP or Universal Credit awards are changing because of these reports.
We sat down with Alan Milburn — and this is what he told us
Before these latest reports emerged, we had the opportunity to interview Alan Milburn about the challenges facing young people who fall out of education and struggle to find employment.
As parents of two neurodivergent children, this was an important conversation for us.
Our eldest son, Joshua, has experienced years of disruption to his education. Like many families, we’ve seen how difficult it can be to secure consistent support from schools, local authorities and other services.
We explained to Alan that children like Joshua are at risk of becoming NEET, not because they lack ambition or potential, but because the systems around them have failed to provide the support they need.
During our conversation, Alan said:
“The real problem is a shortage of opportunities and a shortage of support.”
He also acknowledged that young people and their families are already making considerable efforts to overcome the barriers they face.
That distinction matters.
For many SEND families, the problem has never been a lack of willingness to learn, work or contribute.
It’s that the right opportunities, adjustments and support simply haven’t been available.
You cannot expect a young person to move straight from isolation into employment
One of the most significant moments in our interview came when Alan discussed young people experiencing severe anxiety and isolation.
He recognised that someone who has been struggling to leave their bedroom cannot simply be expected to move immediately into full-time employment.
Instead, he spoke about the importance of building pathways into work, creating opportunities and providing appropriate support.
This is something we strongly agree with.
Many disabled and neurodivergent young people want to work. They want independence, friendships, purpose and the opportunity to build a future.
But some need considerable support to get there.
That might mean supported internships, flexible education, apprenticeships, mentoring, workplace adjustments or gradual introductions to employment.
Taking away financial security without first ensuring those opportunities exist could place already vulnerable young people under additional pressure.
This is why the detail of any proposed reforms matters so much.
The connection between SEND failures and young people becoming NEET
During our interview, we also raised concerns about what we call the SEND-betweeners.
These are children who fall between different parts of the education and support system.
They may struggle in mainstream education but not receive appropriate specialist support. Some experience prolonged school absence, anxiety or repeated breakdowns in educational placements.
Others leave education without the qualifications, confidence or support they need to move into employment.
And when these children reach adulthood, they can find themselves facing an entirely new set of challenges.
The question we put to Alan was straightforward.
If we know that children are struggling early in life, why aren’t we providing the support that could prevent these difficulties from becoming much greater problems later?
Alan acknowledged that education, local authorities, welfare services and other organisations often fail to work together effectively.
He described the need for a more joined-up system with shared responsibilities and better early intervention.
That is a crucial point.
We cannot properly address youth unemployment without also addressing the educational failures that contribute to it.
What could this mean for families with children approaching 16?
For families of disabled children, the transition into adulthood is already complicated.
At 16, young people may begin moving from Disability Living Allowance (DLA) to PIP, depending on their circumstances.
Parents must also navigate changes involving education, health services, social care, employment support and financial entitlements.
The possibility of further changes to disability benefits creates additional uncertainty.
There are several important questions that any final proposals must answer.
Will disabled young people who cannot realistically work continue receiving adequate financial support?
How will additional disability-related costs be assessed?
What happens to young people with fluctuating conditions, severe anxiety or complex neurodevelopmental needs?
Will appropriate employment support actually be available before any financial conditions are introduced?
And what protections will exist for young people who are unable to engage with employment programmes because of their disabilities?
These questions need clear answers before families can properly assess the impact of any proposed reforms.
Our concern: Support must come before expectations
At AskEllie, we believe that young people should have every opportunity to achieve their potential.
We want to see better apprenticeships, supported employment, more flexible education and employers who understand neurodivergence and disability.
We also recognise that some young people will never be able to work, while others may only be able to work with substantial ongoing support.
Their financial security matters just as much.
What concerns us is the possibility that changes to benefits could happen before the necessary improvements to education, health services and employment support are in place.
Because for many families, those services are already difficult to access.
We hear from parents every day whose children are missing education, waiting for assessments, struggling with mental health difficulties or being denied support they desperately need.
These are not children who lack potential.
They are children who need the right environment and the right opportunities.
What happens next?
The full Milburn Review is expected to be published shortly.
Once it is available, families should be able to examine the actual recommendations rather than relying on headlines or speculation.
Any proposals adopted by the Government would need to be assessed against their effects on disabled young people, particularly those with complex needs and those already receiving benefits.
For now, existing benefit rules remain in place unless and until official changes are introduced.
Families should continue with existing PIP applications, reviews and Universal Credit requirements as normal.
At AskEllie, we will be following developments closely and explaining what any confirmed changes mean for SEND families.
A final message to policymakers
During our interview, Alan Milburn told us that young people and their families do not lack effort.
They lack opportunities and support.
Those words have stayed with us.
Because if the purpose of these reforms is genuinely to help more young people build independent and fulfilling lives, the starting point must be providing the support that makes that possible.
Not every disabled young person will be able to work.
But every disabled young person deserves dignity, opportunity, financial security and a future.
We cannot fix the consequences of a failing education system simply by changing the benefits available to the young people who have already been failed by it.
And that is the conversation we believe the country needs to have.
AskEllie — Supporting SEND families, amplifying children’s voices and helping parents understand their rights.
Leave a Reply