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Addressing the Funding Crisis for Special Needs Education in the UK

Being a parent of a child suffering from Hypomyelination with Atrophy of the Basal Ganglia and Cerebellum (H-ABC), a condition caused by mutations in the TUBB4A gene, raises daunting questions about what life will be like as they grow older. This rare neurological disorder leads to progressive deterioration of motor skills and cognitive functions. The uncertainty intensifies when considering the systemic lack of funding for special education in the UK. As my child transitions into their teenage years, the support they receive—or fail to receive—will critically shape their future.


The Current State of Funding

Despite recent efforts by the government, such as the £2.6 billion commitment to improve SEND (Special Educational Needs and Disabilities) (*1) services between 2022 and 2025 (Education Hub), the funding remains insufficient. Local authorities struggle to meet the rising demands, and disparities in funding across regions lead to unequal access to necessary services and resources (Education Hub) (Education Law Center) (*2). Prime Minister Rishi Sunak's campaign has faced criticism for not providing concrete plans to fully support children with special educational needs (Children At The Table) (*3).


The Role of Our Organisation

In this challenging landscape, the H-ABC Foundation UK plays a vital role. We have seen firsthand how crucial our work is in filling the gaps left by inadequate support. Here are some of the ways the H-ABC Foundation UK has made a difference:


1.⁠ ⁠Funding Equipment: Our foundation has provided essential equipment that enhances the learning and daily lives of children with special needs. This includes specialised communication devices, mobility aids, and sensory tools that are often beyond the financial reach of many families. Without this support, many children would struggle to engage with their education and daily activities.

2.⁠ ⁠Providing Information and Support: Our FAQ section offers valuable information for parents and carers, addressing common concerns and providing guidance on accessing support services. This resource has been invaluable in helping families navigate the complex landscape of special needs education and ensuring they are well-informed about their rights and the resources available to them.

3.⁠ ⁠Fundraising Events: We organise various family events to support our initiatives. These events not only raise much-needed funds but also foster a sense of community and solidarity. From family fun days to sponsored runs, our events are designed to engage and inspire the public to contribute to this important cause.

4.⁠ ⁠Advocacy for Screening: One of our key initiatives is advocating for the NHS to include TUBB4A in their screening panel. The TUBB4A gene is linked to H-ABC, and early recognition of this condition is crucial for providing timely and appropriate interventions, which can significantly improve the quality of life for affected children and their families.


Moving Forward

The lack of adequate funding for special education in the UK is a pressing issue that demands immediate attention. It is crucial for the next government to prioritise the needs of special needs children, ensuring that they receive the quality education and support they deserve. By working together—parents, educators, charities, and policymakers—we can create a more inclusive and supportive environment for all children with special needs.


To learn more about our initiatives and how you can get involved, visit the H-ABC Foundation UK website and join our efforts to advocate for better funding and support for special needs education. Your participation can make a significant difference in the lives of children who need it the most.


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