downs syndrome baby

Earlier this month, a group of Tots100 bloggers headed to Westminster to meet with education minister Elizabeth Truss to discuss proposed changes to childcare in the UK.

It was a brilliant opportunity to share our concerns, ask questions and better understand the government’s hopes with recent changes.

And now we’re at it again.

 

On March 18, we will be heading back to Westminster to meet with MP Edward Timpson, who is currently leading a Bill through parliament to improve support for children with special education needs and disabilities.

We will be discussing a range of issues, including:

  • What the new Children and Families Bill means for families where children have special needs 
  • What families need from the government to help ensure they, and young people, have their needs met 
  • What challenges are most important for families, parents and young people dealing with special needs and disabilities 

We have a limited number of spaces available, and a small budget to contribute towards travel expenses for Tots100 bloggers.

If you would be interested in taking part in this meeting, please leave your details in the comments below, or drop us an email at mail@tots100.co.uk



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About 

Sally Whittle is founder of the Tots100, Foodies100, BlogSummit and the MAD Blog Awards. When she’s not working, she can be found blogging at Who’s the Mummy, or having fun with her 7 year old daughter, Flea.

12 Comments

  1. Posted 25 February 2013 at 2:17 pm | Permalink

    I’m gutted as a mom to a daughter who had Rett syndrome and also now a foster carer to a severely disabled young man I would have loved to be part of this. Unfortunately I am on a training course on this day. I wish all the bloggers that attend all the best and hopefully we can engage the policy makes in realising what life is actually like raising a child with special needs. How in doesn’t just affect the child it effects, siblings, relationship’s, financial wellbeing and so much more. If I can help in anyway please contact me as you may know I am passion about every disabled child matters being more than just a well intended document.

  2. Posted 25 February 2013 at 2:33 pm | Permalink

    I have just e-mailed my interest.

    Thanks for the opportunity!

  3. Posted 25 February 2013 at 4:08 pm | Permalink

    I’d love to get involved with this my daughter is deaf and deaf children are facing major cutbacks round here for support and speech therapy x

  4. Posted 25 February 2013 at 7:00 pm | Permalink

    Would LOVE to attend this, thanks for the chance to join in – tried to email you but it didn’t seem to work for me? I have a nearly 6 year old in mainstream and education is high on my priority list at mo. Really hope I can come (I wouldn’t need any travel expenses!). Thanks, Steph

  5. Posted 25 February 2013 at 8:19 pm | Permalink

    Hi – would love to come along – have an 8 year old with a very rare, life limiting genetic disease plus intestinal & bladder failure, she is also registered blind – she’s in special school and my eldest son has Asperger’s and Sensory Processing disorder – he’s statemented and at Mainstream – we are currently looking at 6th form provision as he has just turned 16 (I also have 2 “typical ” children in between!) – now travelling expenses needed as I live in Wimbledon! -

  6. Posted 25 February 2013 at 8:52 pm | Permalink

    I am very interested in this opportunity to discuss the upcoming reforms in SEN. I have a Blind child in mainstream education fully supported BRILLIANTLY at the moment, but had an unnecessarily stressful and unpleasant fight, with the statementing process, to get there (tribunals etc!). I blogged about my relief at the end of this in http://lowdenclear.me/2012/10/05/wonderfully-ordinary/ although this is not my usual content.
    I have taught children with SEN both as a class teacher and more recently as a one to one assistant and help out when necessary at the Riding for the Disabled Association where my daughter is a member.
    My Daughter’s support has been superb but this is no accident it represents enormous efforts on the part of everyone involved in her care. I fully concur with the recently published call to action by charities ref. http://ow.ly/i11yP
    I would not claim travel expenses but would be grateful to be included.

  7. Susan Spence
    Posted 26 February 2013 at 9:33 am | Permalink

    I’ve just emailed you :-)

  8. Posted 27 February 2013 at 10:46 am | Permalink

    This is a brilliant opportunity. I have just sent you an e-mail. X

  9. Renata Blower
    Posted 1 March 2013 at 12:17 pm | Permalink

    Hi, I emailed in the 25th, but apparently it is stuck somewhere in the ether, so I’ll try again!

    I have three children, the youngest one has an undiagnosed condition that gives him complex medical needs and he is physically disabled, being unable to stand or walk. He is in a wheelchair full time and attends the same mainstream school that his brother and sister do, which has been an enormous learning curve for us and the school as he is the first child with complex needs they have hadl. It hasn’t always been easy, and lessons have been learnt both sides. Any mother with a complex child becomes an expert in areas where their child needs an advocate, I am no different and have helped many parents tweak statements and write letters of appeal to a variety of different departments.

    The ‘system’ is invariably complex for children without a diagnosis as they don’t fit any of the tick boxes. Often families struggle to even access help and I am involved in a project designed to bring them together to access support and information (SWAN UK) which, at this present time, is the only resource that exists for them.

    I would chew my right arm off for an opportunity like this, and hope that it would not only be a benefit to me, but also other families that I’m in contact with.

    Oh and I live a train ride away (near Steph’s Two Girls)

    Thanks x

  10. Posted 5 March 2013 at 9:40 am | Permalink

    Hi,

    I hope you will forgive me for this message but I have created a new bookmarking site for parents of children with special needs. You can bookmark any links that are interesting to other parents. The site also automatically bookmark news and blogs from other bloggers.

    If you want your site to the auto bookmarking, just email me. I need your RSS feed. For wordpress sites it is [your domain name name]/feed.

    There is also a twitter account that will auto tweet all the posts and news that is bookmarked. Please follow @forspecialneeds if you are interested.

    Best wishes

    Duncan
    (Dad to a child with Dravet Syndrome)

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