Latest on improving childcare for working parents of disabled children

I have worked part time since my daughter was diagnosed at 5 months (she is now 10). It has always been difficult to juggle but I am lucky to have a really supportive family and unlike the experience above I was introduced to a private local nursery which at the time was given extra funding by the local authority to include children with special needs. It was run by a fantastic, truly inclusive and inspirational woman who at one point when local funding was withdrawn continued to support a child out of her own pocket rather than allow him to lose his place. But I think I was lucky and actually the juggling has become more difficult as my daughter has grown and the gap between her and her peer group widens, so much so that I gave up work last December to concentrate on her secondary school transfer.

Work offered me a productive and professional distraction from what can sometimes be the very intense and emotional journey of raising a disabled child and I do miss that. I still volunteer when I can. Work also provided me with many transferable skills essential when dealing with local services, schools, carers etc, for example, communication skills, negotiation, managing staff, dealing with conflict, the list goes on and for that I am grateful I have had the opportunity to continue for so long.

Hi Hannah - was interested to see your post and I completed the questionnaire on childcare with my experience of it. I was fine when my son was at nursery as he wasn't diagnosed until later but he has autism and severe learning difficulties and is now at special school (he's 11). There have been lots of issues as I have continued to work three days a week but it has been really hard to get after school care - his school runs an after school club but it is 17 miles away and I would have to collect him afterwards which is even further so not worth it. They have recently introduced a minibus service which we pay for but after dropping everyone off he doesn't get home until 7.15pm which is too long a day for him so we did do it for one day a week but no more. He is starting secondary special school closer to home and they have after school club but it is fully booked with a waiting list so the difficulties continue!

The other big issue is the LONG summer holidays and how to cater for those - there are some inclusive clubs around but hard to get many days - again 17 miles away so it's almost a 70 mile round trip in the summer for a 10-4 day at club. We have absolutely no family support or anything else - everything we have we have to organise plan and pay for although we do get six hours direct payments now. It's hard but work does help me to keep my sanity!