DOES YOUR CHILD HAVE VERBAL DYSPRAXIA? POLICY REVIEW

[HayleyK]

There is a policy review going on for what services should be provided for kids with verbal dyspraxia. As a mother of a child with verbal dyspraxia I was shocked by how little of the right therapy was available compared with what it is that these children need to progress. If you are interested in being involved John Levy's contact details and the details of the meeting are below.

Advance notice for 24 November 1400 to 1700 hours in London

Pencil it in your diary and confirm to the e-mail below.

Are you able to influence the direction of potential service delivery and commissioning for DVD?

The London Specialised Commissioning Group has been involved in developing the Pathfinder Pilot around services for children with DVD (Developmental Verbal Dyspraxia). As places at this stakeholder event will be limited please register your interest and further details will follow.

We are seeking a range of views and this invitation is extended to you in order that you can both participate and have your views heard. Further details can be obtained from;

John Levy (Project Lead for LSCG)

Mobile 07974 440969

e-mail ? [email protected]

Independent Consultant to Health, Justice & Social Care e-mail [email protected] web www.kiwiconsultancyltd.com

Is this just a local policy review that is being discussed or nationwide do you know? Certainly my experience is that there has been virtually no NHS help in the past 3.5yrs for DD#1 and for the last 15 months of that she has had NO SALT therapy at all from the NHS. Now they want to palm me off with a parenting workshop instead of seeing her as they are understaffed. If only it were that simple we could stop paying for all the private SALT we do with her eh?!

My boy has verbal dyspraxia and autism and my observation would be that a) there is not enough SALT provision anyway and b) the SALTs who do turn up, know virtually nothing about Verbal dysraxia or autism, and pretty much just trot out a couple of things they learned on the one-day module headed "autism" which they did during their 3 year course. These tend to consist of PECs and visual timetables, neither of which help with the verbal dyspraxia. The only thing that helped my DS was the painstaking and constant echoic practice of every sound, then syllable, then word, with an ABA tutor. But when you mention ABA in front of the LEA, they act like you've just slaughtered their granny in cold blood, such is the depth of the prejudice against what seems to me a perfectly effective way of teaching autistic or LD children.

Ds has DVD amongst other things but is not on the asd spectrum I'm wondering if this is Local or country wide

ds got minimal salt input 4 visits a year and nothing till he wAs 3 it's only recentley thanks to icans involvement and assesment that I have siccesfully argued for a place in a speech unit

I think its worth you all contacting John Levy and registering your interest and also telling him what you've put in here - i.e., that you have a diagnosis of verbal dyspraxia and have received next to nothing of what your child needed on the NHS and also telling him what you think your child needed to improve. Whether or not you can attend the policy review meeting, at least they should realise how awful the current system is if you are having to rely on it to help a child with verbal dyspraxia. I suspect it may be a London based review, but the Nuffield is in London (the centre of excellence for kids with this disoder) and I think you can refer throughout the UK to the Nuffield so it would be relevant for you I imagine.

(I'm a parent of a child with verbal dyspraxia also, by the way in case you're wondering!!) It looked like there wasn't a great deal of parent input into this review and I figure that we'll be able to get a better idea of what these children need if their parents are there to speak up for them. Especially if parents want to push to reopen the Nuffield Unit (specialist nursery for kids with dyspraxia that was closed apparently because of lack of referrals, although it isn't clear whether anyone with kids with verbal dyspraxia were actually told about it to go there..

The consultation into what services should be provided for children with verbal dyspraxia is now live. It would be great if anyone with connections to verbal dyspraxia could respond to the consultation. It runs from today until 25 March. Thanks

www.ealingpct.nhs.uk/nuffield_consultation. asp

I have also set up a facebook page with some information about the reviews and tips that I found useful with my child on verbal dyspraxia and what to do about it in the UK - would be really great if others could post any useful information.
www.facebook.com/home.php?sk=group_17547964 5803269&ap=1