Tuesday, 6 May 2014

Time to Stand Up and Speak Out!

I tend to have a touch of the Dollys about me first thing in the morning (without the fabulousness and with added sleep deprivation).  I tumble out of bed and stumble to the kitchen, pour myself a cup of ambition (well, a weak one), yawn and stretch and try to come to life.  Working nine to f….whenever I get interrupted.

You see, my working life has been complicated lately by the added presence of a small person.  In fact, he may be a record breaking small person, managing to get himself barred from an establishment at the tender age of two years and nine months.

It has now been five weeks since Little J was, for all practical purposes ‘excluded’ from his nursery.  Now no one would use that language to describe this event, but he is no longer allowed to attend so, well, you say ‘tomato’…

What did he do to achieve this feat?  Stealing playdough from the big kids? Running a gingerbread man protection racket?  Sneaking off for extra milk behind the bike shed?  No actually.  He was just ‘too’ disabled (I’ve confiscated his ciggies, but they still won’t have him back..)

Now whilst I jest about exclusion, I am not trying to apportion blame to the nursery.  Quite simply, he was in the wrong setting, with the wrong support in place - and that is a wider issue.  Even with a 1:1 and a Statement of Educational Need, apparently his needs are just too high and he now breeches the nursery’s insurance policy.  It does now look like we will be getting a place at a special needs setting (where he should have been from the start in my mind), but it has been a complex road to get there.  So now I have my social, gorgeous boy back at home, clambering over me and clinging onto my neck for a large portion of the day.  Which is lovely in many ways.  Except for one thing…..I am trying to cling onto a job.

I'm totally on it..
I already work a mere handful of hours per week due to a complete lack of childcare and now, it is only thanks to the immense patience and grace of my employers that I have a job at all.  Because I have no childcare, yet again. 

And what response has there been from statutory services? The services whose apathetic response to our initial efforts to get him into the right setting have led us here.  Surely they were rallying around, immediately calling meetings, desperately trying to ensure that I did not lose a second job due to lack of childcare?  Surely they recognised the message that I have been hammering home at every single meeting we have had. The one that tells them that helping me to work SAVES THEM MONEY!  No actually. 

I’m not saying people weren’t empathetic, but if I could sum up the content of most of the conversations I have had in the last few weeks it would look something like this ‘Oh, that’s a bit pants isn’t it? Well, yes something should be done I guess.  What’s that? practical solutions you say? Well, erm, probably best to just do some more waiting.’ <disclaimer: Not a direct transcript. The word pants was not used. Please don’t sue me.>

Why so little concern? Well, because it’s not really anyone’s job to help me have a job.  Despite all the headlines about removing people from the benefits system and getting them into work, parents of disabled children are not protected by any national law.  In fact, working parents are a distinct oddity.  Public sector professionals don’t really know what to do with me. They look all shifty and nervous when I start bombarding them with work related questions.  Because that wasn’t in the training.  They don’t know the answers.  Questions about the benefits system are a different matter. They are all trained up on that.  But working.  No, we don’t do that.

And why should they know what to say?  Because we are an oddity.  As a working mother to a disabled child I am one of the lucky few.

Currently only 16% of mothers of disabled children work at all, against 61% of all mothers. Oh, and let’s not forget the fact that 85% of mothers of disabled children want to work.  So, Mr Coalition (ok, that was a bit sexist – So, unknown gender person from the Coalition)…you want people off benefits, stimulating the economy..well HEEELLLOOOO.

Now, if you have read my blog before, you may be eye rolling right about now.  Actually, I probably lost you around the statistics and you are off having a cuppa and watching Location, Location, Location.  I know, I know.  We’ve been here before.  I’ve got all political and blogged on this one only a couple of months ago.   So why are we back here again?

Well, because something exciting is happening.  Firstly, I am feeling all campaigny and dusting off my metaphorical placard.  Because I have come to realise just how many other strong, dedicated and determined parents are in exactly the same boat as we are.   Shorty after I posted my open letter to Michael Gove, I became aware of more and more bloggers writing about the same thing.  Then even more posts began to appear.  The #WeWork hashtag started appearing on Twitter, the acronym WMODC (working mothers of disabled children) started being used.  Suddenly, we were a group, not lone voices.  You can see a round up of some of these great blog posts, hosted by the fantastic Premmeditations here.

The second reason that I am bristling with hope at the moment is the announcement that there will be a Parliamentary Inquiry into Childcare Provision for Disabled Children.  It will be led by Conservative MP Robert Buckland and Labour MP Pat Glass.  You can find more information about the inqury here.  And if you are a parent affected by these issues, there is a survey to fill out here.

This is our chance to speak up and be heard.  Our chance to bring about change.  So let’s make it count.  If you are affected by these issues than please get involved, fill out the survey.  Let’s make the most of this opportunity.  Let’s blog, tweet, perhaps even get all retro with a bit of letter writing.  Let’s make sure that the next generation of parents stepping into our already challenging shoes aren’t faced by the same frustration, financial fears and inequality.

And if you are not personally affected, they you can still show your support by sharing what is being said and raising awareness. If you are wondering if this really matters, let me hit you with one more statistic.  On average, it costs three times as much to raise a disabled child than a child with no disabilities.  I want you to imagine what that means for the average family.  Now imagine that half their income was wiped out overnight. 

And to those leading the inquiry, I ask just one thing.  At the end of my last post about working with a disabled child I asked that you hear us.  Now I ask for one step more.

Listen to us.  

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