It’s been over five years since I became a Special Needs Parent. Five long (and often challenging) years of advocating for a child who cannot use her own voice. Five years of learning how to navigate a life of hospital appointments, blood tests, speech therapy, EHCP’s, SAPRA’s. It’s been five years of questioning why things aren’t more comfortable.
Today, our life is slightly more straightforward than it has been. There are fewer appointments to attend. She is making slow but steady progress. This is pleasing because we weren’t given any promises with her diagnosis, just weeks after open-heart surgery. There are, however, still battles that we must participate in to ensure her life is as enriched as it possibly can be.
When we moved to Powys last August, I was wished ‘luck’ when I mentioned my daughter’s requirement for 1:1 support in a school environment. I was told I would have better ‘luck’ if I sent my daughter to a Shropshire school. It turns out they were not being flippant with their wishes of ‘luck’.
The issue wasn’t one that could have really been avoided because Powys did not recognise the funding Monmouthshire had awarded her. However, they also refused to accept the evidence collected from June 2018 through to March 2020. (This was after Monmouthshire allegedly sent the wrong child’s records to Powys.)
Over four weeks, I wrote several emails to my local Welsh Government member, the Education Minister. Finally, I included everyone I could find within the education department at Powys County Council, including the Chief Executive. After weeks of being pushed from pillar to post and back again, we had a Teams meeting arranged within 24 hours to discuss the next steps.
The result was optimal, within a week she was attending school with support, and a clear vision for the future (one which COVID lockdowns have disrupted again). This experience has been an eye-opener. The journey was straightforward in Monmouthshire. The LA assessed her needs, the LA awarded her funding. Albeit the decision came 3 days before the start of term, but it still came.
Exploring the issue further, I’ve found a thousand other stories like ours. Stories in which Powys make the process of seeking funding so tricky that parents give up. When parents give up advocating for their child, you know the system has failed. I promised my daughter that I would never give up at the time of her diagnosis, and I intend to fulfil that promise.