Family Experts guide Certitude’s work

June 18th, 2012
On this Carer’s Week I am especially excited to share with you my recent experience of spending time with an inspirational group of parents. As well as being an insightful and dynamic group of individuals they also share the experience of being parents of young children who have learning disabilities. As Certitude is a provider of support to adults we don’t often benefit from hearing directly from families of young children. Yet we know that too often when we meet people as adults they have become sadly disillusioned with the whole process of transition from children to adult services. We also believe that we will co-design the best support options for the future if we start our engagement much earlier with family experts. And so our conversations with families of children as young as 2 up to the age of about 20 commenced. Around 30 families kindly offered their thoughts on what’s working, not working about their lives now and what’s important to the future. We then brought a smaller group of these parents together to review this information and together with Certitude and support from Helen Sanderson came up with some positive and possible solutions!! No small task – but wow was this group up for it!! For me the most important opportunity was being present to hear the discussions. I listened and I learned….

Families need families – the most reliable, honest and helpful support and guidance families of young children with learning disabilities reported was that which they received from other parents and families. The importance of creating opportunities to bring families together should never be underestimated. What I also heard parents describing was what I would consider as peer mentoring – this standing side by side peer support is a life line to many.

Families describe ongoing frustration and vulnerability in dealing with professionals and regularly experience their child being viewed and described according to what they can’t do. This struck such a cord with me as a large aspect of our current work with adults is about enabling individuals, families and professionals to see each person’s gifts and talents. Person centred planning is the bedrock to enabling this and clearly needs to start from birth.

Parents of children with learning disabilities report spending an inordinate amount of time at medical and other appointments. Time is so limited yet simple, reliable, helpful information is not easily available at the touch of a button. Families and providers have learned so much over the years yet not enough of this learning is being shared with others or available to them when they most need it.

Towards the end of the discussions I was struck by the comment of one family member who said with some confidence that what families need isn’t rocket science. I agree – I also now believe more than ever that getting family support right from an early age will make such a difference to the life of the adult their child will become.

I am humbled and inspired in equal measure by this vibrant group of families. Here at Certitude, along with Helen [see Helen Sanderson Associates], we are excited by the opportunity of working with this dynamic group and offering our practical support to deliver on their great ideas.

It is therefore with this experience in mind that I whole heartedly say on this Carers Week that families are the future …….

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