All Party Parliamentary Group: Down's Syndrome

Recently an All Party Parliamentary Group DS was formed to draw up guidelines for best practice with regard to the education of children with Down's Syndrome. Each child is an individual, but our children do share particular learning prolfiles and if we can share information on that with each other and our schools, we can help ensure the very best for them.

You can download and read the full recommendations here, and they do indeed make positive reading. There are a few areas missing, and the DSA are still tweaking one or two recommendations in terms of specific learning schemes endorsed. But on the whole, I wish I had had such a document at my fingertips when we were drawing up Natalia's Statement of Education Need before she started school.

Yesterday, Sandy Lawrence who chairs the Cornwall Down's Syndrome Support Group invited 3 other Mums along with her to County Hall for a meeting with our local Director of Children, Schools and Families to discuss implementation of the guidelines locally.

We arrived, suited and booted so to speak, I had even dusted off a skirt and blazer. All of us were clutching our 36 page documents under our arms, each of us with a different experience of education and with children at different stages of the journey.

Between us we brought experience of primary and secondary schools, home education, flexi-schooling, Area Resource Bases, 2 of us were former teachers, one had a business background and the fourth a medical grounding.

The meeting went well. Trevor Doughty was clearly open to talking about improvements for our children and those with Chromosomal Syndromes that follow similar health and learning patterns. We all realise that purse strings are tight for all at the moment, and that money for support doesn't grow on trees, but I think we all felt there were ways we could re-use what we already had at our disposal in a more efficient way.

Within our County, that seemed to be:

  • Some flexibility of the transport system, so that parents didn't feel they would have to send their child to a further away special school or ARB, for fear that if their first choice of a nearby mainstream secondary school didn't work out for any reason they would then lose the right to free transport. The rules currently state that only if a school consider the placement of a pupil unsuitable will free transport continue to a subsequent school.
  • Ensuring support continued to allow children with additional needs or disabilities to be able to participate fully in after school clubs and school trips.
  • Rethinking the way existing speach therapists are used. Perhaps moving towards a place of fewer assessments and writing of reports, freeing up more time to spend actually engaging in therapy and activities.
  • Setting up a Co-Worker system, so that interested parents could be trained in basic speech therapy by the DSA or Symbol UK for example, so that they could set up and run small group sessions for children, under the supervision of a trained SALT. How wonderful would sing and Makaton sessions be for babies, or more targetted games and activities for older children!
  • Then we began to try to envisage a way to identify and bookmark a team of Special Interest Professionals would could be called upon coutywide to deliver advice and support to schools and parents. This could include parents, OT, SALT, Physiotherapist, TAs, teachers, IT and SEN software experts and more. That way, the onus on the parent to research and source cutting edge information would relax, and every child would get a fair bite of the cherry, regardless of the experience and expertise or interest level of their school.

As a group we determined to begin to organise this, for we are all doing our bit already by talking to schools and SENCOs. We just need to coordinate our efforts. And you can't say fairer than that. Perhaps you could do the same.

(Oh, and the crack team squeezed in a cuppa and bite of lunch together before heading off home. So a well spent day all round. I do love a bit of scampi and chips, don't you?)

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