SEND reform cannot succeed without incorporating feedback from families
On 17 May 2026, I submitted my response to the UK government’s SEND reform: putting children and young people first consultation. In true ADHD style, I submitted it a day before the deadline!
Like many SEND parents, I have spent years researching, advocating, attending meetings, interpreting distress, fighting for support and trying to hold systems together for a child whose needs are persistently misunderstood.
Over time, one thing has become impossible to ignore:
The SEND system suffers from a lack of relational understanding, flexibility, and respect for lived experience.
Here’s a summary of the points I raised.
Lived experience Is expertise
One of the strongest points I made in my consultation response was this:
Parents of SEND children are routinely expected to contribute to consultations, panels and working groups for free, despite often holding extraordinary levels of practical, hard earned expertise.
Many SEND parents have effectively completed thousands of hours of unpaid specialist work:
researching conditions and interventions
coordinating professionals
observing and interpreting behaviour and distress
managing crises
advocating in hostile systems
learning education law
preventing breakdown at home and school
applying for funding and interventions
This is expertise. It’s expertise I’ve been able to use to write a book (in far less time than it took me to secure the support my daughter needed!)
And yet parents are too often treated as emotional bystanders rather than knowledgeable contributors.
If government genuinely wants better SEND outcomes, lived experience should be embedded into leadership and decision-making structures at every level:
local authority SEND teams
advisory boards
school trust leadership
national policy groups
the Department for Education itself
Parents should not merely be “consulted.” They should be paid, respected and included.
The system is failing Neuroextraordinary children
A central theme throughout my response was concern about increasingly rigid education systems, particularly for neurodivergent children and especially children with PDA profiles.
Schools are becoming more focused on:
attendance
compliance
standardisation
measurable academic outcomes
Where is wellbeing, and mental health?
Many children cannot safely function within systems built around constant demands and behavioural conformity.
This does not mean these children lack intelligence, capability or potential.
It means their nervous systems are experiencing the environment as unsafe. And once their nervous systems are dysregulated, they cannot learn no matter how hard they try.
Real inclusion requires:
flexibility
relational safety
autonomy
emotional attunement
personalised approaches
nervous system awareness
I think It’s worth saying this again:
A child in survival mode cannot learn effectively.
Relational safety is not optional
Throughout the consultation, I kept returning to the same point:
For many SEND children, relational safety is the foundation that makes learning possible.
Teachers matter enormously. The adults who change children’s lives are often not the ones delivering perfect interventions or ticking the correct boxes and they are almost certainly not the ones counting the visible stripes on students’ ties in order to punish children for wearing them incorrectly. They are the ones who make children feel safe, understood and emotionally regulated enough to engage.
But teachers themselves are under immense strain.
Many are overworked, unsupported and trapped inside systems that prioritise data, attendance and attainment over wellbeing and connection.
If we want genuine inclusion, we cannot keep expecting exhausted staff to compensate for systemic problems without:
more staffing
better pay
reduced workload
improved training
greater flexibility
emotionally sustainable working conditions
SEND reform cannot be cosmetic
One question in the consultation asked whether refreshed “areas of development” would improve support.
My honest view is that small structural tweaks will not solve what is fundamentally a systemic problem.
We cannot continue measuring all children against narrow definitions of success while claiming to value inclusion.
If schools are judged almost entirely through attendance figures, exam outcomes and behavioural compliance, then children who cannot safely meet those expectations will continue to be failed no matter how inclusive the language becomes.
True reform requires redefining what educational success looks like.
SENCOs are carrying impossible burdens
I also wrote about SENCOs, because families’ experiences often depend almost entirely on whether they happen to encounter a SENCO who:
understands neurodivergence
builds relationships well
advocates strongly
has emotional capacity left
and who actually believe our children when they describe their struggles
The best SENCOs are often carrying extraordinary emotional strain themselves.
Many are fighting the same battles parents are fighting:
delayed decisions
lack of funding
resistance to provision
inaccessible systems
pressure to “manage” rather than support
Expanding the SENCO role without significantly increasing time, authority and resources risks worsening an already unsustainable situation.
EHCPs often fail children experiencing EBSNA
One of the most important points in my response concerned children experiencing emotionally based school non-attendance (EBSNA).
Current EHCP structures are often built on the assumption that:
school attendance is the default
school attendance is always the optimum outcome
reintegration into traditional schooling is the goal
But for children experiencing trauma, burnout and nervous system overwhelm, those assumptions can become actively harmful.
Once a child reaches crisis point, many EHCP sections stop reflecting reality.
Here’s an example of what I mean:
Stating that a child needs a teacher to prompt them every ten minutes to check they’re following what’s expected of them, it’s only helpful if and when that child is in a lesson to begin with.
Plans need to become genuinely adaptable and needs-led rather than rigidly attendance-led.
Systems should be designed to prevent crisis, not simply react after children and families have already broken down.
The culture of delay is causing harm
One of the clearest patterns across the SEND system is delay.
Delay in:
assessment
support
funding
placement decisions
intervention
These delays may reduce short-term costs for local authorities.
But the long-term consequences are devastating:
trauma
burnout
family breakdown
worsening mental health
parental unemployment
loss of trust in education
justice system involvement
suicidal ideation
By the time support finally arrives, many children are already deeply traumatised.
This is not efficient. It is profoundly costly to children and their families; financially, socially and emotionally.
SEND parents are being silenced by fear
The final issue I raised was one many people still do not feel safe discussing publicly: the fear of FII (Fabricated or Induced Illness) accusations among SEND families, particularly PDA families.
As a parent of a child with situational mutism, I often speak on my daughter’s behalf because she cannot safely advocate for herself in professional settings.
Like many parents, I have sometimes feared being viewed with suspicion simply because I understand and communicate my child’s distress.
More recently, I learned that this fear is both widespread amidst this community and justified.
Parents should not feel frightened to advocate openly for vulnerable children.
When families fear life-changing accusations for speaking honestly about their child’s needs, the system creates silence instead of collaboration.
That harms everyone, especially children.
What SEND reform actually requires
If the government genuinely wants to “put children and young people first,” reform must go beyond administrative restructuring.
It requires:
trusting lived experience
prioritising relational safety
recognising nervous system distress
reducing adversarial processes
intervening earlier
supporting teachers properly
valuing SENCOs realistically
creating flexibility around attendance and provision
listening to (and believing) families before crisis occurs
Most importantly, it requires recognising that inclusion cannot exist inside systems that require children to suppress distress in order to belong.
