Every Disabled Child Doesn't Always Matter....

A few weeks ago I (and many others) were approached by the Every Disabled Child Matters organisation to email our prospective parliamentary candidates to ask them, should their party win the up-coming election, to sign an EDM supprting disabled children and their families:

   "In the lead up to the next General Election, I will be watching with interest to

see the commitments that you make for the political term ahead.

As a supporter of the Every Disabled Child Matters (EDCM) campaign, I ask that
one of the areas that you focus on in your time as an MP is meeting local
disabled children and their families and finding out about the services they
use. I also ask for you to raise any areas of concern in Parliament.

I therefore invite you to sign EDCM’s Constituency Pledge. This is a series of
five commitments that you are signing up to undertake if you are elected as my
local MP. The Constituency Pledge asks you to:

1. Meet with disabled children, young people and their families to discuss key issues of concern to them

2. Raise these issues of concern, and promote rights and resources, for disabled
children, young people and families from my constituency in Parliament

3. Visit local services for disabled children and their families on a regular
basis

4. Support measures to transform services for disabled children and their
families, such as the Aiming High for Disabled Children (AHDC) programme in
England

5. Find out how funding is being used in my constituency to improve services for
disabled children, young people and their families


If you agree, you can find out more information and download a copy of the EDCM
Constituency Pledge at www.edcm.org.uk/constituencypledgeppcs


Please sign it and send a copy through to EDCM either by post: Every Disabled
Child Matters, c/o National Children's Bureau, 8 Wakley Street, London EC1V 7QE,

email: info@edcm.org.uk, or by fax: 020 7843 6313.

Please could you reply to let me know if you will be signing the EDCM
Constituency Pledge.

Yours sincerely"

I received a very positive response from my Labour Candidate (John Piasecki) who readily agreed to sign the EDCM Pledge.
I received this from my Conservative Candidate:

" Thank you for your email.

My party's position on the issue you raise is as follows:

Whilst we share many of the objectives of the EDCM campaign, and are determined to build on this agenda, we need to be clear that due to the appalling state of the public finances, some of the specific pledges will need to be carefully assessed in a wider review of the public finances should we be fortunate enough to win the general election. We will not make unfunded commitments which we then might not be able to deliver. It is unfair to falsely raise the expectations of disabled children and their families.

Whilst we are not in a position to sign the Constituency Pledge, I thought it would be helpful to assure you that making life easier for disabled children and their families will be a priority for a future Conservative Government. That is why we have set out a range of positive policies which will aim to make a real difference to the lives of families with disabled children. These include:

increasing the number of health visitors;

simplifying the assessment process for accessing services;

making it easier for parents to access respite care;

looking carefully at ensuring that Local Authorities accurately assess children’s eligibility for Special Educational Needs statements; and

putting more power and control into the hands of parents and young disabled people themselves so that they can ensure that they receive the right care and support to best suit their needs.

The Conservative Party will continue to meet with EDCM on a regular basis and work constructively with them in the future to improve the lives of disabled children and their families.

Best wishes
Phillip Lee

I am still awating a reply from the LibDem representative!

To say that I am unimpressed with the response from the Conservative chappie is an understatement. I have always voted "blue" in the past.....that may well change.

Young, Autistic and Stagestruck on Channel 4.

I looked forward to this programme SO much. At last...a much needed vault into the spotlight to show those "tutters" and blatant disbelievers EXACTLY what we have to go through on a day-to-day basis.

I have to say, it started well. The beautiful little girl called Mollie was having a bit of a melt-down and tearing round the garden in the way that PDA children do. Fantastic, I thought....this could be Daisy. Let's see how her mum deals with it.....no wait.....let's cut to another child displaying autistic behaviours, OK....I get that, all autistic people are different just like NT people.....now let's cut to Ben.....a fantastic kid who was far more intelligent than the person behind the camera who asked him some, frankly, idiot questions.

After that, it just got worse. Much worse. We we introduced to 2 directors from the Lyric Theatre who had never worked with Autistic people before. This showed. Much. They were deeply patronising and immediately set up a "them and us" sitation.

I was deeply annoyed to see that Mollie was allowed to take herself off and hide under a curtain. The camera kept returning to Mollie and showing her peeping out from under the curtain. The only point of this exercise was to make her look cute. I simply cannot see any other reason. Let's get this utterly clear: PDA ISN'T CUTE. It's nasty and pervasive. Not cute. Ever. If  Daisy displayed that behaviour it would be because she was stressed to the hilt. You can't put a PDA child (I can't speak about PDA adults as I don't have one yet!) in a room full of unpredictable strangers and not get a reaction. A big, big part of PDA is their deep anxiety caused by not knowing what is going to happen next and their inability to predict what might happen. This is why Daisy is a complete control freak...if she is in control then she knows EXACTLY what is coming next. It would have been impossible for Mollie to be in control. Hence the safety of the curtain.

We were told that there was a team of specialised carers on hand at all times. Certainly didn't see any sign of them in Mollie's case. Where were they? Why were they not on camera? How much more enlightening for the audience to see just how much effort would have gone into helping Mollie. Maybe it just doesn't make good TV....

For the first time in my life I complained about a TV programme.

I will be watching again, though. If only in the hope that it will get better. There will never be any justification in causing an Autistic person undue stress though.