Parent-carer forums – why not get involved?

As you know, I'm co-chair of Surrey's parent-carer forum, Family Voice Surrey. I joined at the beginning of the year and realised just how much there was about SEND provision that I didn't know. Although I was very well informed about statementing, there is so much more that involved complex needs provision, transition planning, vulnerable children and the morass of different funding streams is a jungle in itself.

My co-chair at FVS is Angela Kelly, herself the mother of two sons, both with special needs. Ang and I get on very well and have a very productive relationship. In fact, we've just been working hard to launch the new Family Voice Surrey website before we head off on our respective summer hols.

Being involved with a parent-carer forum is something we both feel strongly about as a way of helping other parents in a similar position to find the help they need and to be involved ourselves in shaping local special needs services for families who need them. If you feel like you can offer something, why not get in touch with your local forum? You can find a list here

Recently, we've both had to speak at a number of events and drafted a joint speech, which we then personalise with our own experience.  Angela spoke at a Voluntary and Community Services event in Surrey and I thought what she said about her own experience was really powerful and explained why parents who are already under immense pressure looking after their own children with special needs, feel compelled to give up their time to get involved and help others. I'm posting an excerpt here:

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I have been involved in the Surrey’s parent-carer forum for almost 18 months and been involved in the Pathfinder project since November 2011.  I became involved as a result of my own frustrating experiences of the current system. Endless hours on the telephone. Endless filling in forms, endlessly telling my child's story over and over again.

Being heard but not listened to is one of the most frustrating feelings there is and for this to happen time and time again, when you yourself are exhausted and just about hanging on, well something had to change!

Parent-carer participation is at the very heart of the pathfinder project; it is mandatory. We are central to, and key partners in, the SE7 SEND pathfinder activity and this has been a learning process for all parties involved both parent and professional.  Far from being a lip-service ‘add-on’ or after-thought, our voices are the ones that should be heard the loudest over the noise of politics and officialdom. After all, it’s our children, that we love and worry about every day, who are the point of the whole exercise.

All parent-carers who are involved are a parent or a carer of a child or young person with SEN and or disabilities, so we have a wide range of experience between us of what it is like to live with and try to find the right educational, health and care solution for children with additional needs.  This is what makes parent participation vital, to make sure that any changes to the system actually DO improve support for children with SEN & disabilities which will, in turn, help their parents.

This gives us a unique perspective when it comes to our involvement in the pathfinder. Because of course, we are the ones still caring for our children’s needs, when the professionals have gone home for the day.We aim to bring an informed voice to the discussions for the direction of reforms for the various work streams. This involvement that has helped the professionals see the positive side and the potential benefits to parent-participation.

Two parents from the committee sit on each stream of work that is being tested.  These are, the Education, Health and Care plan, Early intervention / complex needs, personal budgets, the local offer, transition and vulnerable/looked after children who have no parents of their own to speak for them.

My overall experience of my involvement in the Pathfinder has been positive and I feel that as a parent-carer I am able to contribute to shaping the future for SEN and disabled children

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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two sons with Asperger Syndrome.
Journalist & author of two novels and a guide to SEN statementing. PR & social media expert. Rare Disease & chronic pain patient advocate.
Tania Tirraoro
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2 Comments

  1. Sian Northey

    Hi I work with a parent Network but I also attend fora especially for parents or carers of children with disabilities. It is good to be involved share knowledge and advice and to make friends. It is also important that parents views are heard by services and policy makers. Being a parent is challenging but even more so when additional needs are taken into consideration. These fora also provide a useful source of information about services and resources. If parents do not take up this opportunity when they are able to they are missing vital opportunities. Some places offer the opportunity for comments to be passed on by phone writing or email if parents are unable to attend. Why moan and complain about services and policy when you have an opportunity to shape it.

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