Over a year ago, Liz Wilson and I posted a blog about the perception that to work with children with Special Educational Needs (SEND) required the ability to work with “difficult families”. Our experience at the time was that we didn’t know any difficult families and that is still the same.
Unfortunately, there is a strongly held perception that families of people who have learning disabilities must, by their very nature, be difficult – and one homogenous group.
I read a quote in a book the other week: “numbers of people aren’t people, they’re numbers”. It made me think of the numbers that are often bandied about in relation to people who are still in inpatient settings and considered part of the (now finished?) Transforming Care programme.
Certitude’s involvement with the Voluntary Organisations Disabled Group (VODG) London Demonstrator work last year, as well as our experience supporting people who have lived in hospital settings or are at risk of being admitted, has highlighted that the right support; support that is sustainable, built around what the person wants and needs and is most importantly grounded within local communities, is best achieved when numbers aren’t the starting point.
Our experience has shown that commissioning the right support is best done when it is personal and a party of equals: the person, their family and the funding authority. No one person, or professional is an expert in everything. There is strength, knowledge, experience and success in bringing people together in finding the right support. There is also a shared commitment to making it work.
For Certitude, the ability to work with and alongside people, to continue the approach of shared decision making, joint working, sharing power is a continual challenge. People being in control about how they want us to support them challenges us to think differently, work differently and has the potential to be seen at times as threatening. And yet we all have the right to be in control of our lives and how we live them.
Over the past year, I have spent more time with families of people affected by Transforming Care. Often seen in numbers again – and without any formally acknowledged and respected role. Families, who bring knowledge, skill, expertise and experience without which achieving the right support is simply not possible.
One of the recommendations from the VODG report was the need to formally recognise the support needs of families who have experienced the trauma of their worlds being torn upside down and apart – distinct from the needs of the person moving from hospital. Certitude sees family support as a critical component of getting support right and we welcome and want to highlight again the importance of this recommendation.
Tomorrow, the 3rd Annual BAPs Awards recognises and celebrates the impact SEND parent bloggers have in raising awareness of additional needs and Certitude is proud to be supporting the event. Of course, just because you blog /use social media doesn’t make you any more awesome a parent than anyone else, and we welcome the chance to celebrate all parents – not just those nominated – rather than defend them.
I am in awe of parents and families who blog, use social media to raise awareness and share their experiences – whether good or bad.
I am grateful to parents and families who stick their heads above the parapet and share. A couple of weeks ago, a mum tweeted about her son and why he doesn’t eat breakfast. Those 240 characters completely reshaped my whole thinking about my teenage son who has autism and our tussles over food. 240 characters changed everything for me!
I am alternately heartbroken, terrified and thrilled beyond all means by parents and families who share what has happened to them and their loved ones. Who I am as a parent, as Development Director at Certitude and as a person has fundamentally shifted as a result.
So, tomorrow night, I and my colleagues from Certitude will raise a glass to all parents and families (maybe even myself too!) – who are all really rather awesome!