I wrote last week about our experience of getting Ben in to a nursery. It was stressful but in the grand scheme of things we were incredibly lucky.

Ben has been to that nursery for 2-3 days a week, year-round, for almost four years. Since last September he has spent 2.5 days a week at a local special needs primary school and then two days a week at the mainstream nursery. He is still a nursery age child so the time at school counts as ‘nursery’ from an educational perspective.

If we all just pretend for a moment that things are simple and linear, it is possible to track a path from Ben in 2010/11 who was startled by all loud noises, uncomfortable around young children and wary of new people to Ben in 2013/14 who took ONE WEEK to settle in to a new school, copes admirably with loud, unpredictable classmates and has made trusting relationships with staff. I don’t think that would have happened if Ben had spent the last four years at home with me, and I think a large portion of his development (particularly social) is down to nursery. Meanwhile, of course, I’ve been able to work a bit and have maintained some semblance of sanity while having some income.

We just got Ben’s first school report which makes me want to burst with pride. I won’t bore you with the full transcript, but two bits that illustrate my point here are:

‘Ben took no time to settle in and establish himself as a very popular young man! He quickly adjusted to his new school and new routine. He built really positive relationship with the adults in his class and it has been wonderful to see him make so much progress this year.’

‘Ben has participated in choir club together with some children from the local mainstream school, and really enjoys being with the other children. He is extremely popular with them too and is always the first to be picked by them for partner games. Ben clearly loves this and everyone comments on how happy he is in choir.’ [NB by definition, choir involves noise]

Ben has so far had a broadly positive experience of childcare and education but at a national level the picture still seems bleak.

The report of a Parliamentary Inquiry into childcare for disabled children was published this week and is full of extraordinary, but unsurprising, statistics about the difficulty, cost and inadequacy of childcare:

“Despite the huge progress made in creating a national system of childcare provision in the past two decades, the evidence received by this Inquiry clearly demonstrates that national policy has failed to create a childcare system that meets the needs of disabled children and their families. “

Some stats:

Only 16% of mothers of disabled children work compared with 61% of all mothers.

72% of families with disabled children cut back or give up work because of childcare problems.

86% of families of disabled children who use childcare pay above average

33% of parent carers don’t use childcare because staff don’t have the right experience.

41% of families with disabled children age 3 and 4 can’t access 15hr free early education offer (that theoretically all children are entitled to)

Behind all those statistics are real parents trying to go to work and bright, beautiful disabled children who deserve the opportunity to experience everything that good childcare has to offer.

The Inquiry took oral evidence from a number of mothers of disabled children. One of the striking things is the inconsistency of provision. I have crossed paths with Stacie Lewis a number of times – we live in neighbouring boroughs in south London, our children are close in age and have a similar level and type of disability. But her experience was totally different from mine. She went to more than 50 childminders and nurseries before she found one that would take her daughter.

The inevitable problem with providing good childcare for disabled children is it is more expensive than if the child were not disabled. They need more support, more staff hours, more meetings with other professionals, better trained staff, adapted equipment and buildings. It is no coincidence that Ben’s nursery is run by our local authority – private nurseries are unlikely (and generally don’t) take on children who will undermine their profit margin.

Our local authority ‘restructured’ Ben’s nursery last year which involved a new staffing structure and everyone having to reapply for their jobs. I wrote a number of letters expressing concern about the effect this would have on children like Ben which the council essentially ignored and so inevitably, come the summer, all of the staff who directly knew Ben had left. We kept Ben at home for a few weeks before we felt confident that he could return and be safely cared for. He then had to get to know new staff, who had very little training in Ben’s particular needs.

I’m glad we persevered – both in terms of making it work with new staff, and in fighting with our local authority for seven months so Ben could continue to go to the nursery when he started school part-time. Some of the children have known Ben for years now – they bring him toys to play with and read him books. The staff (who survived the restructure) know our family and supported us in getting Ben in to school early. There is real value in Ben being part of this and it is incredibly disappointing that thousands of disabled children are being denied such opportunities.