An opportunity to speak Truth to Power

It was an absolute honour and privilege when the opportunity arose for me, a participant of Changing Realities, to attend the meeting with Secretary of State for Education, Bridget Phillipson, at the Department for Education in London. Our aim was to discuss the challenges of parenting children with SEND (special educational needs and disabilities) on a low-income, and to suggest how some of these challenges might be overcome.

I attended with several other members of Changing Realities, which included Researchers and Participants, most of whom were parents of children with additional needs or special educational needs and disabilities from across the country. It was an opportunity for us all to come together to share key messages and make recommendations for positive change.

I live in the North of England and am a disabled single mother of two children. Both of my children have special educational needs. I am on Universal Credit and PIP.

I was first to share my story, which was mainly focused on the concerns I have about the impact of the Government's recent plans – which were being flagged extensively in the media and have since been announced in the Spring Budget – to cut £6 billion in disability benefits in the near future. I spoke of the fear I have of me, and my family, being plunged even further into poverty because I am already using my own PIP money to pay for my son’s support whilst I await an official diagnosis of his strongly suspected ADHD, Dyspraxia and Autism. However, getting an official diagnosis could take up to four years – he has already been diagnosed as having Dyslexia, but that was because he was screened for this at his school rather than by an external official body.

I am doing my best to give my son the very best start in life, and have been using my own PIP money to buy my son specialist aids for his diagnosed and suspected conditions. Examples of some of the equipment I buy for my son out of my PIP money include weighted blankets and bedding, because this helps to comfort some of his ADHD-like symptoms. I also buy my son specialist foods from selected health shops, which contain less additives and preservatives because readily available mainstream foods often have a lot of these ingredients in them and they can often exacerbate his ADHD symptoms even more.

I have also spent money on specialist Speech-to-Text Software in order to help make learning easier for my son as he often finds handwriting very challenging as opposed to many of his peers. This software translates spoken words into text and also has dyslexia friendly fonts which helps us both a lot when we are doing his homework at home together.

The impact of using my PIP money for my son’s support rather than on mine, often means that I go without services that I need. Services such as paying for a gardener to help me maintain both our back and front gardens which are both very labour intensive to maintain by myself. It would take a huge toll on my physical disabilities if I ever attempted to do them.

I also spoke about understanding that it is part of the Government's plans to get a large number of people who are on disability benefits (like myself) off of these benefits and back into work. I explained how finding and maintaining a job would be very challenging for some of us parents with SEND children because we have to attend lots of different appointments during the day – appointments that are not only for ourselves and our adult issues, but for our children also.

In the meeting, I highlighted some of the other additional hidden challenges that parents like us with SEND children face on a daily basis too, for instance: not having enough money to live on in order to support all of the needs of our SEND children, not getting enough support from education and services, dealing with the often complex conditionality around SEND, and not always getting the appropriate support as and when we need it.

I felt passionate about sharing my experiences and insights with the Education Secretary because I wanted her to at least consider implementing some of them into the new Child Poverty Strategy that I know the Government is currently working on, as well as in the work that she does in her role as Education Secretary.

Overall, I think that the very fact that the Education Secretary invited us down to London to hear our individual stories was indicative of the fact that she truly is an Education Secretary that cares. I really did feel that she was keenly engaged, and listened attentively to all of our individual experiences and concerns, even to the point that she stayed longer in the meeting than she was supposed to.

Furthermore, I also came away from the meeting feeling happy that I had finally been given a chance to speak about some of the challenges that I, and many others, face on a daily basis; an opportunity to speak truth to power.