When parents are told their child has a disability or additional  need they undergo much emotional turmoil and can experience a whole range of emotions; upset, feelings of grief and loss, fear for the present and the future, relief, joy and overwhelming love.

Each parent is different and it is the beginning of a new journey for them. A journey that has unique experiences, one which brings parents in contact with many practitioners, one which can have great challenges to the whole family, including siblings and grandparents.

All family members are the experts on their children with additional needs; which is why parent participation in service development is so important and why the Parent Carer Council for Cornwall was formed – to ensure all parents have their voice heard. The collective impact of many individual voices can make long term constructive change in service delivery.



Can be a one off or a series of meetings that look at a very specific topic or concern and will generally have certain people there and set things to look at.

Working Group

Is a group containing key people involved in that service, of which a parent is one, that meets to look at specific services or element or documentation of that service and usually meets for a set number of times or has a specific task or job to do (known as a task and finish group) within a set time scale.

Steering Group

Is a group containing key people involved in that service, of which a parent is one, that looks at a specific service or part of and collectively shapes the way that service continues and is shaped or developed in the future. They usually have meetings at regular intervals of 4 to 6 weeks and can continue for the duration of the project or service.


We are often asked if we can provide a parent representative to sit on an interview panel where the post directly or indirectly would be working with disabled children and their families. These happen as and when jobs are advertised and are for ALL services – Local Authority, Health & Voluntary.

Talking at conferences and being part of training

Delivered to practitioners from all sectors.


This is where a service provider has asked for parent carer’s views on a specific service and can be done individually or in small or large groups. Services providers may or may not be present.


We undertake questionnaires to inform change and to highlight good and bad practice


…at an event about your experience as a parent carer, this can be in small or large groups.

If you would like to learn more about the meetings we have parent reps on and get feedback from, please follow this link. If you have any issues that you would like taken to any of these meetings please contact a Parent Participation Worker.


Are you interested in finding out more about the development of services for disabled children?

Would you like to share your views with other Parents and Professionals?

Then why not become a Parent Rep and have a voice influencing these decisions?

To find out more about Participation Opportunities and the volunteer expenses we pay please contact us here.


The Ladder of Participation



“We want to make decisions with you”


“Here’s what we’re planning, what do you think”


“Here’s what we are going to do”

True participation includes:
Strategic involvement of parents. . .
Across all services, regarding. . .
All disabilities and health conditions

What are the benefits for Practitioners and Services?

  • A means to fulfill legislation
  • National Service Framework (NSF)
  • Every Child Matters (ECM)
  • Allows professionals to effectively monitor and evaluate service change and development by talking first hand to service users
  • Breaks down barriers between parents and professionals
  • Develops an open and transparent dialogue between parents and professionals
  • Professionals hear real stories that evidence their findings of the issues families experience
  • Impacts on and enables effective use of budgets through consultation with service users

What are the benefits for Parent Carers?

  • An opportunity to learn more about how services work and how decisions are made
  • Gain greater knowledge of what services are available to families
  • To make an impact by asking the questions no one else asks
  • Enables parents’ view to be represented
  • Makes parents feel valued and useful
  • Allows parents to practice old skills and learn new ones
  • Gives parents the opportunity to access training and change careers
  • Gain respect due to their unique knowledge, skills and experiences
  • Builds confidence and empowers parents
  • Make new friendships