Information, information, information!

The Government green paper, Support and Aspiration, proposed that local authorities and other services set out a local offer of all services available to support children who are disabled or who have SEN and their families. It stated that…

“This easy-to-understand information for parents will set out what is normally available in schools to help children with lower-level SEN, as well as the options available to support families who need additional help to care for their child; and local authorities and other local services communicate a clear local offer for families to clarify what support is available and from whom”.

Information is key for every parent of a child with additional needs (always has been, always will be!) Like everything in the world of disability though nothing is as easy or straightforward as it should be. Well, the concept is straightforward enough but getting it to actually happen really isn’t for a number of complex and often unfathomable reasons!

Having been deeply involved with the last Governments policy, Aiming High for Disabled Children, I’d been watching with interest what was happening with the new proposed changes. Like many other parents, I suspect, I was trying to get my head around the vast amount of changes in Health, education, Social care and welfare. As someone who does this stuff for a living I have to confess to feeling rather overwhelmed by it all and wondering how to respond and advise and inform the families I work with…if I was struggling what the hell were they thinking? How do we make sense of it all?

Then, a few months ago I was asked to co-lead on our Local Offer. I was chuffed to bits that my co chair (the Head of SEN from the local authority) had embraced the whole idea of working in real partnership with parents in this way. Being a big fan of co-production I couldn’t have been happier.

In saying this I had a few nagging doubts!

Firstly I have to confess that I wasn’t really sure myself what a “local offer” was…so best do some research! Actually I shouldn’t have worried too much because it turned out that lots of other people, even those who had been working on it much longer weren’t really sure either!

Secondly, the SEND (Special Educational Needs and Disabilities) Reforms are for children and young people aged 0-25 years. G is now almost 23 and I’m not sure I know what parents of younger children want or need and… so I’d need to find out PDQ!

As it often does, all of this got me thinking back to the early years with G and how we got our information .

For a start, when we got G’s diagnosis, there was no World Wide Web to search for information. We got the medical stuff via a medical dictionary, from a book shop…. this makes me feel like a bit of a dinosaur! 

The Consultant who diagnosed G told us we’d be “plugged into the system” which we learned was a series of professionals, physiotherapists, Occupational Therapists, Speech Therapists, educational psychologists and Portage workers who we visited and who visited us (weekly or every two weeks, but to the extent we felt our house needed a revolving door!) And, who in turn told us other things we needed to know…or at least what they thought we needed to know in their expert opinion.

Then I joined a local parent support group called Hobby Horse (listed as an Opportunity Playgroup for “handicapped” children) Despite the dated name it really was fantastic! A real lifeline… and here I got the support from other parents, vital information I needed at the time and a fighting spirit. More than anything it was here that I discovered the power in a united group and the strength in unity that was to form the basis of everything I’ve done ever since.

Over the years I have met and still meet enough parents in the work I do to know that they still often find out about the information they need, their rights and entitlements by chance or luck! Either from other parents or from committed and clued up professionals. Consequently I welcome the duty on Local Authorities to produce a Local Offer that explains all this clearly and simply in one place… and am determined ours will be a good one!

So, for my first task (after only two meetings of the task group) and in the spirit of co-production, on Monday last week we held a one day workshop. We invited parents, young disabled people and professionals to work together to look at what a good local offer could look like in Oxfordshire. Find out what a local offer is, what we have to build on already and what’s missing. The lovely Nicola Gitsham from Preparing for Adulthood agreed to facilitate the day for us….and did so brilliantly!

It was a really good day!

There was a real buzz about the day and the energy and commitment in the room WAS AMAZING. When you get groups of parents and professionals in a room together there is often some negativity as a result of (understandable) anger from parents and (understandable) defensiveness from professionals but there was none of this, just a genuine and refreshing commitment to work together to make things better.

The Task group I’m working with are already seeing this as a huge opportunity to do something above and beyond what the Government are saying we should do (can’t tell you how that makes me feel!)

We, like many other areas are at the very early stages of this. This is a tough piece of work, none of it’s going to be easy but working together in this way meant that the group came up with some really practical but imaginative actions as our first steps and as an added and welcome bonus there was a real commitment to embedding person centred approaches in the local offer too.

As someone who is keen to start with the “dream” of where we want to get to first and then work out the steps to get there I suggested at our follow up meeting on Wednesday that we come up with a vision statement that we all agree on (we being the task group and every other stakeholder)

For starters, my vision is this…

“That every parent of a child or young person with additional needs gets the information they need, when they need it…and that every professional working with them understands it’s their duty to ensure this happens”

What do you think?