We are lucky to have a small group of ESPCF members informally known as our reference group. They are experts by experience across a range of SEND (special educational needs and disabilities) areas and are happy to be approached by us if we receive requests from the local authority or a health provider for ‘ad-hoc’ feedback. This could be for documents or letters which are being developed or are under review.
Members of the reference group recently reviewed the wording in a letter about informed consent in the autism assessment process. ESPCF was asked to comment on possible changes to the standard letter and was provided with some background information that ‘following a specific situation a few years ago, we’ve been wondering whether or not we need to include information about how an ASC label can be a barrier in certain circumstances’ (such as entering a small number of jobs).
The reference group challenged some of the principles involved, such as that the use of the words barriers and disability are not helpful and that having an ASC label is not the barrier, it is the systems and lack of understanding that causes barriers. All the parent carer feedback was accepted in full.
We were pleased to receive this response showing how it is possible for your feedback to have a real impact:
The whole team was in agreement with the proposals put forward by the parent carer forum and found the insights highly valuable. I wanted to extend my thanks again to the parent carer forum for their help in this matter.
This was an occasion where the parent carer voice was invaluable in providing a different, but crucial, perspective. And it goes to show why we talk so often about the need for the parent care voice being ‘at the table’ when decisions are being made or work being undertaken in relation to the services which SEND children and young people use.
If you would like to be part of this reference group, please get in touch.