Open letter from DCP chair, Amanda Batten, to parents who completed our lockdown survey
In May, over 4,000 of you shared your experience of lockdown, in response to our survey. The results are outlined here and it makes for sober reading – although I don’t expect that any of you were very surprised by the findings.
You took the time to complete the survey, at a time when there was so much going on, so the least I can do is get back to you to update you on how this report has been used, and the impact it has had on government.
After weeks of shouting at the television, I was personally just really pleased that our report finally got disabled children and their families onto the agenda at the No.10 Covid-19 press briefing, thanks to our backing from The Sun. To hear Health Secretary, Matt Hancock say that he’d read the report and that it was ‘incredibly important’ was a start, even if the rest of the answer left something to be desired. Some acknowledgement of just how difficult lockdown has been for families with disabled children is important.
This has been the most impactful report co-ordinated by DCP to date and there has been genuine interest and engagement from government in the story it tells. We were able to share it immediately with senior officials across all the key government departments and have in depth discussions (alongside parents) with Department for Education, Department for Health and Social Care, Cabinet Office, NHS England and Children’s Minister, Vicky Ford.
Within government there are civil servants who are really committed to increasing support for disabled children and families, and they have to make the case for this within government and alongside competing priorities for guidance and funding. The survey findings gave them evidence to use in these internal wrangles – and they did use it. It raised the profile of disabled children with Ministers, and was used internally to evidence bids for funding and policy change.
Of course that doesn’t mean everything has changed. But it is unusual for a report to be taken up within government to the extent that this one was.
So what progress has been made?
Well, there’s been progress on short breaks/respite, which desperately need to get up and running to support families over the summer. There’s been new guidance, and a direction to prioritise short breaks. It’s impossible to get government to ring fence funds at the moment which is really frustrating, but we’ll be able to share everything that’s gone out on short breaks later this week, so you can see what local authorities have been asked to do.
Secondly, the easements on Education, Health and Care Plans will come to an end this month. The report didn’t achieve this on its own, but DCP was a key part of the lobbying for rights to be restored, and I think this is an area which we can all agree is vital. NHS England is going to do a formal response to the report, which we’ll share with you. They’ve importantly prioritised children with SEND in the ‘restoration’ of therapy and health staff, and have committed to working with us to take forward a number of priorities.
Meetings are ongoing, and we have to just keep up the pressure.
At times during this period, I’m sure all of us have felt frustrated and perhaps powerless. So more than ever it is important to remember that you do have a voice and it has been heard. The world hasn’t changed, but there has been progress – that wouldn’t have happened without you.
With best wishes to you and your families,