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SEND – Participation of Parent Carers in Local Services

SEND - Participation of Parent Carers in local services

Carers Partnership Board
SEND Performance and Engagement Group
Children’s Autism Partnership Group
MAT Protocol - Young People moving to Adults services
Learning Disabilities Partnership Boards Multi Agency Meetings.
Children/Young People's Mental Health Group
Schools and Communities
Local Offer
School Effectiveness
Children's Health
SENCO Packs for all Settings and Schools
Service Guides
PFA - Preparing for Adulthood
RCHT Design - New Children and Women's Health Building
PCC Strategic Work
Wellbeing and Autism Wheel Forum

The purpose of the Board is to discuss and address issues of common concern to all Carers in Cornwall. To raise awareness and improve understanding of the vital role Carers undertake in supporting the people they care for and each other. Exchanging ideas, strengthening skills and sharing examples of good practice are essential for the development of good services in Education, Health and Social Care for Carers of children and adults. Members are encouraged to keep up to date with National and local developments and be active in their caring communities.

Current Matters

The Board is currently undergoing a revision in the way it works and new Terms of Reference are being created. A new Carers Strategy for Cornwall is being planned. The Direct Payment system is currently being updated and Adult Day Services are being reviewed ready for recommissioning.

Parent Carers Cornwall (PCC) have a seat on this group and there is
representation from Education, Health and Social Care. We meet
monthly and PCC has a designated slot on the agenda to raise concerns
and issues parent/carers have raised with us.

Areas of work currently being raised by PCC are:

  • The number of young people being on part time timetables or being
    excluded from school.
  • Transition from Children to Adult Services
  • Transport
  • Support for parent/carers while both waiting for assessments and
    following assessments of their child.

We also look at Workstream Plans which cover areas such as:

  • Special Educational Years Early Years
  • Preparing for Adulthood
  • Provision for Communication and Interaction NeedsWhere these have been marked as work completed PCC will  challenge if we are not in agreement.


  • We are currently working with services to produce a new Transition
  • Looking over the Transport and Cold Weather protocols to feedback to
  • Working with Education regarding off rolling in schools

We chair this working group which brings together those in
leadership roles for Autism in various children’s services within
Cornwall. This was done with the intention to consider what is
offered to children and their families and to ensure collaboration
across services as part of developing a clear approach on managing
the needs of Children and Young People (CYP) with Autism.
It advises and informs commissioners on how families can be
supported through early interventions and consideration is given to
NICE Autism guidance and the National Autism Strategy.

This working group has helped to develop the Autism Strategy for
Cornwall. Another area which the group focused on was to help
develop the Autism Wheel, which can be found on the Cornwall
Care and Support website.

Parent Carers Cornwall have been a key partner in this piece of work.

MAT Protocol_Young People moving from Childrens to Adults Services FINAL

We have a parent carer group that regularly oversees the development of the Local Offer and feeds back on where links are broken, where new organisations need adding and where information is incorrect.

We are currently working with the school effectiveness team on a graduated response document.

We meet with the Commissioner for Children's health monthly. Discussion is often around CAMHS, Autism, Complex Health Need Children. Those young people with SEMH needs.

SENCO Packs have been developed for every school in Cornwall, along with distribution to GPs, Family Hubs, preschools, Child Development Centres containing the guide to services copies of the booklets with checklists for parents and carers for when they visit potential new schools.

There is separate checklist for young people in Secondary schools looking at FE.

The PCC has put together a Service Guide for parent carers detailing lots of services in Cornwall and nationally that can support their families.

To receive a copy, new families will be required to register with the PCC via the website or contact traceypccc@outlook.com

PFA is a multi-agency meeting looking on how we can get things right for young people making that transition from children to adult services.
What for their future, training employment, housing, socialising?
Communication to families has to be key, we have raised communication between services needs to change where young people are making that transition.

The PCC lead has been involved in looking at the plans, layout of the building etc.
This piece of work is ongoing.

PCC Strategic is parent/carers who are part of the PCC Strategic group coming together monthly to discuss day to day business.
They bring issues/concerns regarding services that have been brought to their attention good and bad.
Planning for future work and activities like training, conferences and events.

This is a quarterly meeting of professionals and parent/carer representative that Parent Carers Cornwall (PCC) are involved with. The aim of the forum is to review and improve this specific area of the council Care and Support website.

The Wheel is a tool for accessing information and advice but also enables the user to create an individual plan to make positive changes for their child. This can also be helpful when communicating your childs needs to schools and other professionals. Particularly where they may not specifically see the needs that you at home are supporting. We all know how frustrating this can be.

Recently the forum have worked on the ‘Autism and Challenging Behaviour’ section and it has just been updated with feedback given from PCC members. We have also included advice and support for parents wellbeing.

The area of Pathological Demand Avoidance (PDA) is being put together at the moment and again is being reviewed by both parents and professionals to ensure this information is both accurate and informative for families.

Forthcoming priorities for the group are, ensuring the landing page is accessible and considering ways we can make this more user friendly. For example, having an audio introduction/explanation of how to use the wheel as there is a lot of reading throughout. We are also gathering information for the section ‘Help after diagnosis’ and will be updating this shortly.

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