Despite being a political animal, I have to confess that parliamentary goings on are usually the last thing to get my Friday night into full swing. But last Friday was different…
I had had a rough week. Nursery worries had loomed large on the agenda for 7 long days. As I have said before on the blog, we are very lucky that we have found and can just about afford a private nursery for Boo. No state-funded nursery locally can accommodate his needs and our working schedule, you see. There are two localish SEN nurseries at which Boo could start in September when his FEET funding (15 hours a week of childcare – which amounts to much less in a private nursery, by the way) kicks in. But after many conversations with two of his consultants, we realised that Boo is ‘not nearly disabled enough’ to attend one of them and ‘not disabled in the right way’ for the other. Yes. these are the sort of conversations I have on a regular basis (sigh)… Not to mention that we would have to get approved for transport between the SEN nursery free hours and the private nursery for the shortfall between his 15 hours of funded daycare and my working week. When I asked the consultant what the odds on that were, he frowned and said ‘would you be surprised if I laughed?’ I wouldn’t have been, of course.
No: private is our only option and we have a longstanding and good relationship with the mainstream nursery, which Sissyboo (now 6) was also at 4 days a week for 4 years. But in order for him to be there, he needs 1:1 care. Boo’s quadriplegic cerebral palsy means that he cannot move independently at all, feed himself or access toys or activities or play with his many friends without support.
Since he started there (a year ago today, in fact), we have tried three different funding pots to get 1:1 support for him. First, we tried an inclusion grant, which gave him 8 hours a week 1:1 over 4 days. Then we moved to an acute medical needs fund, which gave us 12 and freed up the inclusion grant money for equipment (which is what it’s meant for). Now he’s two, we are ineligible for acute medical needs (although his needs are still acute by any criteria you might use to judge) and so we have had to apply for a ‘discretionary’ grant.
Initially (with the inclusion money) the nursery had to apply every 8 weeks for 1:1 funding for Boo. Every 8 weeks, people! When the LEA realised his CP wasn’t going to be cured by our fairy godmother, it eventually went up to every 16. What a waste of people’s time and energy. Cerebral palsy does not disappear with wishing or praying (Lord knows, I do enough of both). The holes in Boo’s brain are not, miraculously, going to regrow white matter and the synapses rewire overnight. This is not going to go away. And neither are we.
You might think this application treadmill is just an irritation that’s worth living with. Well I agree, we have to live with it, but it’s not a mere irritation. It’s a source of major anxiety.
Because every 16 weeks we are told with condemnatory looks as if we are asking for something totally unreasonable, that the funding might not be granted this time round. Every 16 weeks, I face the fact that I might have to give up work with no notice period (my notice period at work is 3 months, by the way) because Boo’s 1:1 might be pulled. Every 16 weeks, I face the possibility of us losing our home, the home Social Services have just begun a grant application on to adapt the front access. The funding hasn’t been pulled yet, so again, I consider myself lucky, but as consultants and SENCOs and council workers regularly tell me, it could be at any time.
Last week – thank God – we found we had got discretionary funding for another 16 weeks, but, unlike the medical needs fund, this pot of money doesn’t cover school holidays. (Why is there always a but?) Because I am only supposed to work 15 hours a week as a part-time school teacher, presumably (although I know full well from my many teacher friends that few part-time school teachers do that). So we are going to have to hope we get an inclusion grant to cover the 2.5 weeks of the summer holidays I am working and that the discretionary funding is so discrete it won’t fund at all. The nursery is fudging half-terms because they are kind and partly because we pay very high fees for long days that Boo doesn’t use even two-thirds of because of his therapies and appointments.
And here’s another problem we’ve been dealing with lately: the panel’s calendar of meetings. We have to apply regular as clockwork for Boo’s discretionary funding. But the panel’s meetings don’t conform to the same schedule. This means that every time Boo’s funding is up for reconsideration, he loses his 1:1 for up to 3-4 weeks while we wait for the panel to reconvene and deign to communicate their decision. Yes: 3-4 weeks! How any organisation can meet to award grants that are renewable at regular intervals and not schedule meetings so that grants can be renewed before existing ones expire is completely beyond me.
The first time we faced such a grant hiatus (for 3 weeks), I worked half the night every day so as to keep Boo in nursery for the shortest time possible around his appointments. I became quite ill with fatigue and anxiety. I tried to hide it, but nursery could see. I am not a good liar. And ever since, they have covered these gaps and continued his 1:1 to prevent me from driving myself into the wall. I am very grateful. We are lucky. But why should they have to do this?
Many others are not so lucky. Many cannot even contemplate going back to work after having a disabled child. Juggling work and all the appointments (we have 5 this week, folks!) is incredibly difficult. It relies upon flexible employers and good childcare providers. There are not enough of either in this country. If there were, more children would have access to childcare settings that can promote our children’s social, physical and cognitive development in ways that are hard to overestimate.
As I was mulling all of this over and feeling that familiar combination of anger, despair and desire to help change things, I found I had been copied into a tweet sent by the lovely Sarah Ricketts, who blogs over at Gingerbread and Sunshine. I’m sure that you’ll remember the powerful post she wrote for our Invisible Woman campaign recently where a bunch of us bloggers who have children with additional needs wrote to highlight the challenges/impossibility of trying to work when your child is disabled. A common theme of many of our posts was the challenges in finding childcare that is inclusive, affordable and flexible enough to accommodate our children.
So, we were all delighted last Friday to hear that a Parliamentary Inquiry has been launched to report on precisely these difficulties led by MPs Robert Buckland and Pat Glass. You can read more about the Inquiry here. There is a survey you can complete and there are opportunities to contribute to the Call for Evidence that has been issued. If you have a disabled child and have had to give up work or are struggling to do so, I know how strongly you will feel about this. I know I won’t need to ask you to fill out the survey.
I’m going to be doing that later today. I have also already contacted Robert Buckland (@RobertBuckland) to support the Inquiry and to alert him to the campaigning bloggers have already initiated on this subject, spearheaded by the fabulous Hannah Postgate, founder of Rosy and Bo, who gave an eloquent interview on this very subject for Woman’s Hour a couple of months back (and which had me in tears in the car on the way back from one of Boo’s physio appointments).
We will also be linking up blog posts where we share our experiences of trying to access childcare for our children and the lie that is often masked by the word inclusion. So if you have a post or would like to share an experience, do let me know.
Otherwise, let’s make ourselves heard in this Inquiry. Let’s tweet and write to our MPs. Let’s complete the survey. We have evidence aplenty. We deserve to be listened to, because our kids deserve to be heard and seen and accepted. Because inclusion should be a reality rather than an aspiration.
Posts you should read
Just as Sarah says over at Gingerbread and Sunshine, It’s Time to Stand Up and Speak Out. And this parent has more to say than most now that Little J, at the tender age of 33 months has been effectively excluded from nursery that was inadequately provisioned to meet his needs.
Can I get Some Childcare Over Here? Over at the fabulous Itssmallsworld read this revealing post that reminds us that the need for childcare doesn’t end when our kids start school. In fact, life just becomes a whole lot more complicated and expensive,
In a powerful post titled ‘Under the Spotlight: The Childcare Conundrum’ over on Orange This Way you read the impossible task that one working family has had finding any childcare at all for the lovely Orange.