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Latest on improving childcare for working parents of disabled children

Hannah_RosyandBoHannah_RosyandBo Member Posts: 11 Listener
I am passionate about helping campaign for parents hat choose to work and have a disabled child. I thought this recent article by Stacie Lewis in the Independent really brings the point home just how hard it is to continue working for so many of us. http://ind.pn/1mmRcBD Have you managed to juggle it somehow?

Replies

  • NikiMNikiM Member Posts: 36 Connected
    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 It was run by a fantastic, truly inclusive and inspirational woman who at one point when local funding was withdrawn continued to support a child out of her own pocket rather than allow him to lose his place.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.
  • Hannah_RosyandBoHannah_RosyandBo Member Posts: 11 Listener
    edited July 2014
    Hi Everyone,

    So, I went back to Parliament yesterday to the launch of the Inquiry into Childcare for Disabled Children. I gave evidence to Parliament recently and the report makes compelling reading!

    It costs up to eight times more than childcare for children without disabilities and only 28% of local authorities have sufficient. There is no statutory duty on them to provide it and they are ignoring the intention of a 'duty of regard'.

    We are asking Government to improve choice and flexibility, increase availability and make childcare for disabled children good quality at an affordable cost.

    If you'd like to read the report - it's an easy read actually, and perhaps send your comments to Robert Buckland MP and Pat Glass MP then more info is here... http://bit.ly/1qjzahO

    Thanks

    Hannah xx
  • socksoffsocksoff Member Posts: 32
    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!
  • Natasha BrownNatasha Brown Member Posts: 112 Courageous
    Holiday plays schemes which started at 10 am were tricky.. I now save up short break overnight allocation and managed to get extra nights after one provision allowed son to run off.,, so half terms and half holidays he goes away Monday thru to Friday. Fortunately his school only has short holidays. When small it was a nanny for him and two sisters. V expensive.
    The other issue is time off work for appointments which eats into holiday entitlement.
    It can be done but it is costly. Broken nights still after 17 years don't help...an office job with some level of flexibility does.
  • gladysgladys Member Posts: 53 Courageous
    A general question for parents and carers. My son who is CP after premature birth, quadraplegic dystonia of CP. He is trying to stand and loves it and gaining strength in legs, but core strength is gradually improving slowly. He is at corrected age for cognitive and socialisation skills.

    I have again been told at Evelina about the 2 year rule of thumb if not sitting unsupported likely to be in a wheelchair . Can anyone advise me what this is based upon and if there are cases where core strength has improved after the 2 year deadline and hence avoiding the prospect of being in a wheelchair. I am deeply worried again about all this. With no family support and prem baby friends whose children are fine (ie no CP) i feel very much alone in all this.
  • lauradavis1992lauradavis1992 Member Posts: 6
    Hello everyone,

    I am a Psychology student who is in my last year of university and my dissertation is regarding stress in parents who have children with learning difficulties or disabilities. I was just wondering if any of you would mind filling out this survey for me. I would be so grateful!! It will only take 5-10 minutes.

    Here is the link: https://westminsterpsych.az1.qualtrics.com/SE/?SID=SV_3WVxLxywzxtt62F Any questions or queries let me know :)

    Thank you for your help
    Laura
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