The System

I spoke in Parliament recently. It’s a strange thing to even write as I could never have imagined me doing this. I was given the opportunity by Contact, the national charity for families of disabled children, who had arranged a meeting with MPs to discuss the findings of its Counting the Costs report.

Among many other concerning statistics was the finding that 62% of parent carers have given up work or reduced hours. The impact on family finances here is obvious but for many, work is far more than this. It can bring a sense of identity and supports wellbeing, connections and self-esteem. It also equips people with skills that are mightily useful in navigating ‘The System’.

I was invited to speak as I have written a paper advocating for inbuilt school holiday provision in special schools. Access to childcare for disabled children is a huge barrier for many families. It simply does not exist in the same way that it does for non-disabled children. Breakfast and after school clubs are rare and, if available at all, very patchy (i.e. do not run all week). Specialist holiday clubs are also rare and again offer patchy provision that is not compatible with committing to regular work.

The issues families are facing are far more widespread than childcare however.

Some of the stories I heard around that opulent oak panelled meeting room in Parliament I am still thinking about now. From housing situations where the word inadequate is an understatement, to parent carers having transport for their child unlawfully taken away. Hearing these stories, spoken with voices that wobbled as they travelled over the pain, shifted something in me. The frustration, pain, anger and passion was raw, and powerful.

The truth of it is that no family is affected by just one issue. Caring for a disabled child is all-consuming, and utterly exhausting. But somehow, families have to give even more of themselves to navigate the maze that is ‘The System’ to even access support. Often this is because their basic rights to services have not been met.

This is not people asking for more, or ‘nice to haves’. These are basic needs.

Many people do not know what services are available to them, many have had statutory services either taken away or have been unable to access them. It is the combination of these factors that increases pressure on families to unbearable levels. Until families reach crisis point.

At the centre of this is ‘The System’. But it’s not just one ‘System’, it’s the unwieldy and tangled interaction of many systems that don’t talk to each other, a confusing mess that anyone would struggle to navigate.

I’ll finish this with a tiny insight into one ‘System’ I recently collided with. I decided to count how many pages of forms someone would need to complete to refer their child into one very specific service (speech and language therapy). It was 63 pages.

Services need to do better. In the meantime, charities like Contact work to bridge the gaps and ensure families know their rights and what support is available to them. Contact run a free helpline which can be a great starting point.