On December 9th we led a delegation of Black leaders, community advocates, and parents
— individuals who not only have lived experience navigating the SEND system for their children, but who also dedicate their lives to supporting families within their communities — to the Ministry of Justice UK.
Together, we contributed to the Law Commission of England and Wales review of disabled children’s social care law consultation. This was an unprecedented opportunity to ensure that the voices of those most impacted by these systems are placed at the heart of change.
The conversations were deeply revealing and reinforced the urgent need for systemic reform.
The session and consultation revealed:
🟡 Deprivation amplifies disparities:
Disabled children in the most deprived areas are more likely to be overlooked for the support they deserve.
🟡 Restrictive funding models leave children without critical support:
Parents shared stories of direct payments being clawed back or denied flexibility to meet their children’s unique needs. The consultation echoed this as a systemic issue .
🟡 Bureaucratic hurdles block access to diagnosis and support:
One mother shared how it took six years to get an autism diagnosis for her son due to systemic delays.
🟡 Cultural perceptions and bias create additional challenges:
Black families, particularly Black women, face significant barriers when accessing social care, often labelled as “difficult”, “angry” or “aggressive” for advocating for their children.
🟡 Children’s mental health is at risk:
Without timely diagnosis or support, children experience worsening mental health challenges, such as increased anxiety, emotional distress, and behavioural struggles.
Parents in the session spoke about the devastating impact of delays, which leave children feeling misunderstood and unsupported.
These realities highlight the urgency of centring equity in
Advocacy isn’t just about fixing what’s broken—it’s about creating a framework that values every child’s unique potential, including their mental well-being, regardless of race, economic status, or disability.
We’re here to disrupt this cycle. We’re demanding a system that:
1. Bases eligibility on need, not diagnosis.
2. Empowers families in a way that allows them to address their child’s unique needs without bureaucratic restrictions.
3. Holds local authorities accountable.
4. Embeds culturally competent practices into every stage of social care.
To everyone involved—thank you for making your voices heard, for sharing your lived experiences, and for standing firm in the fight for equity.
Today was just the beginning and I’m looking forward to 2025, we are just getting started!
