Feedback on Education Support and Services

Richard_Scope

 Children and young people with cerebral palsy and their families are under-represented in current policy initiatives – both below offer a chance to contribute to the policy dialogues currently happening.

 

Feedback on Education Support and Services:  On behalf of the Department for Education, the Council for Disabled Children is looking for disabled young people and young people with special educational needs (SEN) aged 12 – 18 years old to be part of their young people’s advisory group FLARE. FLARE works together to share their views and experiences to help the Department for Education and other teams to understand how disabled children and young people and those with SEN want to receive the support and services they need. To find out more and access application forms follow this link: https://councilfordisabledchildren.org.uk/.../flare...

The deadline for applications is Friday 19th May at 5pm.   … Just to put this one in context, there is no mention of children and young people with cerebral palsy or their needs or aspirations within the Department for Education's recent SEND and Alternative Provision Improvement Plan!  

 

Feedback on the Red Book:  The NHS and the Department for Health and Social Care is looking into updating the personal child health record (what we all know as the ‘Red Book’) and digitising this.  NHS England has commissioned a research company to look into the existing contents of the Red Book to understand whether these are useful for parents and professionals and also where else child health records are being logged and referred to other than in the Red Book.   If parents would like to contribute, please could you encourage them to complete the following survey.  They may then be asked to participate in an interview.  Here’s the link for the Parent Survey:  https://qfreeaccountssjc1.az1.qualtrics.com/jfe/form/SV_51EM1dNygouEkdM   

For context on this: One of the key recommendations from the initial report from the All-Party Parliamentary Group on Cerebral Palsy is that “The Personal Child Health Record, or ‘red book’, should be modified to check for signs of abnormal motor development, as a practical tool to support parents and health visitors to know and look out for signs of cerebral palsy, and enable more rapid onward referral.”  The Report highlights: “Infants and very young children with cerebral palsy need effective, early intervention to improve life outcomes and minimise secondary complications. There is indisputable evidence that the first years of a child’s life are the most crucial period of human development. Cerebral palsy and associated neuro disabilities have been widely demonstrated to be highly responsive to early intervention when plasticity (ability to change) in the child’s developing brain is at its greatest. Failure to intervene early represents a significant cost, both to the child, and to the Treasury later down the line, when considering the costs of care and support throughout life, and, of course, an enormous personal cost to the families involved. Despite this, effective early intervention remains the exception, rather than the norm, in the UK.”  Action CP has been lobbying for the new digital Red Book to include information about typical motor development as well as warning signs with clear information for the next steps for parents if they are concerned to enable more rapid identification, assessment and intervention for very young children.