Friday, 12 April 2013

Can You Help Us Help the PM Understand Autism?


You may remember one of our founder members Anna Kennedy OBE gave the Prime Minister a letter from Act Now For Autism regarding our campaign for autism trained advocates during a conversation when she was awarded Tesco Achieving Mum Of The Year. Click here to read a transcript of their conversation. Click here to read the letter.

Below is the response Anna got from Prime Minister David Cameron and we're quite puzzled by it as he clearly didn't read the letter or in fact listen to Anna. It's also rather telling how little he knows about autism and the fear adults are living in because of the changes to benefits
 

What would you like us to say to David Cameron in response to his letter below? We want to hear from you so we can reply on your behalf  and on behalf of the other 12,000+ supporters of Act Now For Autism across the UK.

Comment below this post or email us at mail@actnowforautism.co.uk






4 comments:

Glynn parry said...

why high funtioning autism? what about those who are low funtioning, no mention in the letter on this. advocates should be advailable regardless of severity.

Anonymous said...

Mr Cameron has completely missed the point, in my opinion. I have had to fight for everything for my son, now 24, and I wonder if Mr Cameron would like to offer him a job. The need for a non- partisan advocate for the family with autism is essential. It's hard enough being a parent of a young adult with autism without having to be their teacher and lawyer as well. Andrea (Andie_E on Twitter)

Anonymous said...

I don't think there is anything we can say to David Cameron to help him understand. The letter Anna gave him was clearly written and in the conversation she had with him it was clear he wasn't really listening. He's not really interested. This response has been written by someone in the DWP as a basic fob-off response. The only chance we have to make him really listen is if we start telling people to vote against him in the local council elections - that is the only form of communication he is interested in is the ballot box.

Janine O'Rourke said...

Hi Carole,

My thoughts on this are simple. I would like, at some point in my son's life, simply to be his mum. I'd like to lay down my various roles as doctor, psychologist, solicitor, advocate, educator, administrator, nutritionist, occupational therapist, speech therapist, mediator and negotiator and simply enjoy him, go out for a meal, go and see a film, spend some time out walking and not be thinking about the next battle I have coming up.

For his sake, I think his dependency on me must come to an end at some point, as any healthy child's would once adulthood is reached. I'd like to think that on the morning of his assessment for PIP (or anything else he may need to be assessed for) that I can simply wish him luck, secure in the knowledge that his properly trained, impartial, knowledgeable advocate can go in there with him and ensure that those present obtain a full and accurate picture of him, his life, his health and his abilities.

If no such person is available I will, of course, do it myself, as I have everything else since he was diagnosed. But what of those adults who don't have anyone to represent them? Those who don't understand their own conditions well enough to realise they need help with expressing themselves and answering the questions put to them? If there's no-one else to do it, what happens when I die or lose my marbles, or simply become too old and tired to keep up with the ever changing entitlements and criteria? What will become of him then?

The point of the public sector is to provide a safety net for those who were unable to provide for themselves, whatever the reason for that might be. That is being stripped away to provide profits for companies and the most vulnerable and least able are paying the price. Crossing your fingers and hoping for the best isn't good enough, these people need proper representation whatever their circumstances, whoever they may or may not have in their lives. Advocates must be available and they must be independent, not provided by health care companies who have targets to meet. Anything less than this is unacceptable.

Thank you for doing this, Carole.

Best wishes,

Janine O'Rourke

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