The Percy Hedley Foundation Speaks Out

"Time to Listen to all Parents"

Imagine being told that your child has severe cerebral palsy by a paediatrician. Where do you turn? What should you do? How will you cope?

First Steps to Independence The Percy Hedley Foundation, a charity based in Newcastle upon Tyne, offers a free parent and child support service and advice centre where babies from as young as six months are brought by their parents for one or two mornings per week. Parents learn about their child's special needs along with other parents and take part in practical classes in which parents and toddlers learn together. Parents are shown how best to help their children sit, stand, walk, communicate, play, eat drink and develop their personal care skills. They are also introduced to appropriate toys and games and being taught in a group they learn early social skills. Parents find this support invaluable and a typical comment is:

"The network of support is very valuable, as being the parent of a disabled child can be very lonely and daunting. I've learned a lot through the group therapy sessions which we can continue at home."

Parents and Children Learning together A number of children progress to the point where they are able to go to their local mainstream primary school when they reach school age. However, the incidence of cerebral palsy is increasing and the degree of disability within the condition is becoming more and more severe. Therefore many of the children need on-going specialist education, therapy and care to develop their potential and that is when parents often face massive problems getting their Local Education Authority to agree.

In my experience, parents face two massive hurdles getting the specialist educational therapy and care services we offer to school aged children. Firstly, they face the ideology of inclusion which is generally narrowly interpreted as going to a mainstream school. The Department for Education and Skills says:

"Inclusion is about much more than the types of school children attend: it is about the quality of their experience and how far they are helped to learn, achieve and participate fully in the life of the school."

What a pity so few local authorities appear to have taken this message on board.

Even if parents convince their local authority that their child needs special educational provision they then face the second massive hurdle. Few local authorities offer specialist educational provision to meet the needs resulting from discrete conditions such as cerebral palsy or severe communication difficulties. Children are generally offered the local authority's generic special school provision. Many local authorities, in my experience, are completely unwilling to listen to what parents are seeking for their child. They make it clear that they will only be offered what the local authority provides. This is increasingly resulting in more and more Educational Tribunals.

It is time the Department for Education ensured that local authorities interpret the concept of inclusion in the way it is intended and not in the very narrow way so often the norm. It is also time the Department gave parents the support they need to ensure their children obtain the specialist education, therapy and care they need.


© Jim Ferris

This article first appeared in The Parliamentary Monitor, Issue 126 (April 2005), p.44.
Email: editorial.housemag@parlicom.com

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