Every child achieving and thriving?
What will the government's SEND reforms mean for children and young people with PWS?
Last week the government set out it's plan for SEND reform, in a white paper called "Every child achieving and thriving".
This plan commits £4 billion with the aim of creating a more inclusive system and address current failures.
It includes the creation of new Individual Support Plans (ISPs) with legal standing for all children with SEND, and more SEND provision in mainstream schools, while Education, Health and Care Plans (EHCPs) will be reserved for those with the most complex needs. You can read more details about everything in the plan here.
PWSA UK has contributed to the consultation process for this plan. Patsy, our Support and Information Team Lead, attended the consultation meetings hosted by the Disabled Children's Partnership and emphasized that all children with PWS have a learning need that requires a thorough EHCP. Drawing on the experiences of the many students with PWS we have supported, Patsy demonstrated how mainstream settings normally only work when there is full time 1:1 in place, and that the syndrome isn’t taken seriously enough. We emphasized that PWS can be seen as an overeating disorder with no consideration of the complex needs that go along with it and how this impacts people's access to education.
While we welcome the extra funding the government has committed and the recognition that all children with SEND should have a legally backed support plan, we are watching developments closely and insisting that all children and young people with Prader-Willi syndrome should still have EHCPs and fall into the 'most complex needs' category. We are continuing to work closely with the DCP on this and emphasizing that PWS must be taken seriously within the education system and that professionals should come to us as a first port of call.
The government is now consulting on this paper and wants to hear from parents of young people with SEND. You can respond to the consultation process here until May 18th.
In the meantime, if you have any concerns about the education your child is receiving, our PWS Specialist Advice Team can help you navigate the SEND system and get the right support in place for your child. Find out more here
