Under the spotlight: The Childcare Conundrum

Often, being the mother of a child more complicated than most, it can feel like the political agenda just misses us out. Passes us by, in favour of vote-winning rhetoric over house-prices, immigration, school hours and even the price of beer.

But this week, a small chink of light appeared in the form of a Parliamentary Inquiry into the provision and cost of childcare for disabled children.

Much has been said about childcare in political circles, of late. From the new tax-free childcare scheme announced by the government last year to the escalating cost of childcare heralding a huge rise in ‘mumpreneurs’ (I’m not the only one who’s a bit ‘hmmm’ about that word I suspect…), childcare has featured heavily in the political and news agenda. But most of the powwow has slipstreamed fast over my head because, when it comes to childcare provision for Orange, we are still yet to pass ‘Go’.

With Beep we trod a mainstream path and it was, comparatively, an easy ride. We found a local childminder we liked and could afford, booked her in, and that was that. In the blink of an eye her needs were catered for and I settled back into the routine of work, knowing that she was safe and happy. When my consultancy work took off and my hours became long, we found a wonderful nanny who we shared with another family, and our girls spent their toddler days like little sisters, doing each others hair and squabbling over who played with the pink buggy, running about in the park, being grumpy at playgroup and heading up to town like mini city-sophisticates for days out.

At three, Beep started in the local pre-school, no question over whether it was ‘suitable’ or ‘met her needs’. It just was, and it did. And now she’s in school, she’s slotted neatly into after-school and holiday care with a brilliant childminder in the village. We have been able to find good quality childcare for Beep wherever we have lived, city, suburbs and seaside village. It has come at a cost, but it’s available. There are options.

For Orange, it’s not been as simple. The reality has been that, until now, we haven’t been able to find a single childcare setting that could meet his needs. Not in any of the three postcodes we’ve inhabited since his birth.

Orange is an easygoing, placid little boy. He is social and he positively shines in the company of others. He loves nothing more than being around other little children. He will smile, reach out for them and chat to engage their attention in a way he just doesn’t with adults. He knows he is one of them.

More than anything I know how much he would benefit developmentally from being around other small children on a daily basis and taking part in organised play in a way that simply doesn’t happen at home. Attending nursery or pre-school is more important for Orange that it was for Beep, I’d say. Quite apart from the fact that we need childcare to enable us to work, nursery is an essential learning experience for a child with developmental difficulties. And yet, here we are, at age three, and yet to experience that first day of nursery.

A year ago, I started enquiring about pre-school for Orange. Looking round places, talking to his Portage worker, researching online and chatting to other parents. But most of what we saw simply couldn’t meet his needs. The same obstacles kept presenting themselves. Step access. Echo-ey, noisy acoustics. No ‘safe zone’ for little ones with no mobility. ‘Free-play’ ethos which is basically just a bunch of loud kids running about in a room… Staff without the skill or time to spoon-feed a little boy who can’t chew. And who I would feel confident handing him over to, knowing that he could have a seizure and stop breathing while he’s there…

Finding a setting that he could a) get in to and around in a wheelchair and b) would allow him to flourish once he was in the door, while keeping him safe, was quite the challenge.

A few months ago we eventually settled on a nursery in a nearby village, that has a staff with plenty of experience and knowledge of additional needs, a layout and set-up suitable for a child who has little independent mobility and no awareness of when he’s about to be trampled on by bouncing, bounding children, and an ethos that promotes thoughtful, creative, floor-based learning. Orange, as good a judge of character as he is, was instantly happy in the manager’s company and I felt confident, on very first meeting her, that she and her team could provide a safe and happy environment for him, where he would thrive. And not be trampled on by rampaging toddlers.

I wanted to book him in immediately. Throw him right in there, into the mix of little tots he was craning his head to see and shouting ‘eeeeeyyyooo’ to excitedly as we looked around. I would happily have handed him over then and there.

But there were hurdles to be scaled. Rather large ones, that we are still overcoming.

Orange needs constant 1-2-1 care at nursery to be safe and to be able to join in with activities. He needs physical help to move around, play and eat. And of course there’s the huge Orange elephant in the room in that he has a history of seizures that cause him to stop breathing.

Catering for Orange’s needs just isn’t covered under the standard terms of what a typical childcare setting offers. I’m sure that in there somewhere there’s a discrimination case waiting to be mounted, but the law as it stands just doesn’t protect or enable disabled children and their families and so childcare settings are not obliged to provide for children who don’t fit the norm.

Paying for a 1-2-1- carer full-time, on top of nursery fees, is simply beyond the means of 99% of families and so funding has to be sought. Our team at the Local Authority have been supportive with making this happen for us but, even so, have only been able to secure six hours of funding. During term-times only.

Six hours. Thirty-nine weeks a year. And that’s it.

While I am over the moon that Orange will be starting at nursery soon, there’s a crucial missing link here in that childcare is not solely for the benefit of the child but also to allow the parents to work. To keep a roof over their heads and contribute economically. And six hours a week simply isn’t enough. Six hours a day is barely enough.

We have had to, and will continue to have to, rely on help from family to fill the gap that childcare should be filling. I am only able to work when we have family help to enable this and I am incredibly lucky that my line of work means I can work so flexibly. Albeit, it is a gargantuan juggling act. And it puts enormous pressure on our wider family unit because we have to be completely self-sufficient, knowing that adequate outside help simply isn’t available.

And what I absolutely cannot understand, is how we got to this place where over 600,000 parents of disabled children say they have been unable to return to work (84% of mothers of the 800,000 disabled children in the UK have not returned to work). The system simply doesn’t cater for them.

Of course, you may argue that our circumstances are unusual. So far aside from the norm that we couldn’t possibly expect mainstream childcare to cater for our needs. That it’s just bad luck and we should suck it up. But that would be a backward way of looking at it. You see it is not us, or indeed our children, that marks us out as ‘other’. After all, we are consultants, teachers, buyers, artists, accountants, office managers, hair stylists, corporate fund raisers, army officers, tax payers, contributors to society. We have financial commitments that must be met (and some…) just like other families. We have hopes, dreams and desires, just like other families. We have careers hard fought for, just like other families.

But what ultimately stands us apart, and allows us all to often to fall into a black hole of isolation and financial vissitude is that we are denied the opportunity to return to our jobs and careers, because the support systems that enable parents to work are strikingly absent for children whose needs are more complicated.

The conversation about enabling parents of disabled children to work began not so long ago here and I wrote what I’ll admit was quite an angry blog post about the issue back in March when we were mid-flow trying to secure a nursery place for Orange. And so I welcome with open arms this Parliamentary Inquiry into childcare for children with disabilities. It is so desperately long overdue.

And to other parents who have faced similar issues in finding childcare for their disabled child, I would say this. Get involved. This is our chance to step into the spotlight and let our needs and views be known. Whether you have lost your career because childcare didn’t work for your child, lost your home because the finances didn’t add up with just one parent working, or are hanging on to the bare bones of a job by your back teeth but would like to be able to work more without relying on relatives to help, share your views.

The inquiry is seeking evidence from families, professionals and ‘a range of stakeholders’ (whatever that means) during May and June:

  • Written evidence can be sent for inclusion in the enquiry to childcarefordisabledchildren@edcm.org.uk until Monday 9 June 2014. This is a chance to share your experiences with a willing and influential audience. To ensure families with disabled children don’t continue to fall down the gaps left by an inadequate childcare system.
  • Families can also respond to this survey, which is gathering evidence to submit to the enquiry.
  • The inquiry is holding four oral evidence sessions during June. These will be chaired by Robert Buckland MP and Pat Glass MP. Write to them. Share your story. You might also want to consider writing to your local MP with reference to the inquiry. Belt and braces, so to speak.
We have a limited window in which to act and share our experiences to ensure that future childcare policy takes the needs of our children into account. We are under the spotlight. For perhaps the first time ever. There is a glimmer of hope but it needs us to facilitate real change.


Let’s talk about work, baby (AKA ‘This is long, better fetch yourself a cuppa’)

I have to be upfront and admit I’m a little more than fashionably late to the party on this topic. An overflowing work schedule, trying to find a nursery for young Orange (another whole post), home adaptations work requiring more than the usual quota of project management (yet another whole post, you want to put our oil tank there, really?), and of course daily life with a SWAN in tow has meant sitting down to write has skidded fast down my ballooning to-do list.

While I have been refereeing disagreements between builders, drafting a gazillion PR plans, form-filling and wrestling with lycra suits (Orange’s, not mine), an emergent voice from the hive of Working Mothers of a Disabled Child (WMOADC*, snappy, huh? Thanks Are you Kiddingney) has been gathering over something incredibly important.


Paid work. Employment. Self-employment. A job. Entrepreneurship. A career. That dreadful misnomer beloved by the likes of the Daily Fail, having it all.

Thanks to the strength of previous generations of women who have challenged the status quo, being a ‘working mother’ is more welcomed than sneered upon in today’s society. Great strides have been taken, enabling women to take on the (sometimes farcical) juggling act that is bearing children and maintaining a career they either need, or desire, or both.

But under the surface of the fractured glass ceiling stands a group of women whose situations don’t fit the typical mould. And for whom the system is still erecting barrier after barrier to the world of work. If you have a disabled child, the glass ceiling, or even the office door, can be all but inaccessible.

One might assume, when the barriers to work grow ever tougher to scale, that there is an agenda at play to actively discourage mothers of disabled children from contributing to the country’s rather parched public coffers. As if once you bring a child with disabilities into the world you are cast aside into a net marked ‘other’, with an assumption that you will willingly renounce the normal things you once did, like going to work to earn a living, consigning them to the confines of the memory box.

Nobody without a gift for the occult can predict entirely what lies ahead in their life. I’m pretty sure I’m not alone in my teenage experience of sitting in the career advisor’s office, sifting through lever arch files of (deathly dull) career profiles without one twinkling of contemplation for what might happen to my as-yet-undecided-upon career if I, at some unknown point in the future, gave birth to a child with disabilities.

As it turned out, I was lucky. I blundered, vaguely, into a career that now allows me to work in some pretty fanciful and flexible ways. Actually I was lucky twice over in that I also have the support of family. I have extra pairs of hands to take care of Orange and help manage the full-time workload of therapies, appointments and admin while I skip off in heels to bring home a little bacon and stimulate my mind away from a descent into dark chaos.

I need and want to work but it is my own, providential personal circumstances allowing this to happen. Should I have pursued a career that required me to be employed 9-5 5/7, or if I had been reliant on conventional childcare for Orange, this happy house of cards would never have made it above ground zero.

To give a little context to the uninitiated, a little over a year ago, I posted this little doodle. An idle hour spent trying to capture in illustrative form, the scope and scale of the demands of being a parent carer to an undiagnosed child.

The response was overwhelming. Words of compassion, sadness, anger, comradeship. It was all there. As Orange grows up it’s becoming ever clearer that the demands of caring for him, while they change continually, will not lessen. If anything, they will probably grow.

Managing all this extra, unwished for but suddenly compulsory life ‘stuff’ that goes with the territory of disability, means that for many mothers of disabled children (and some dads, I haven’t forgotten the dads), having a job or career can become an impossibility. For many, the barriers are insurmountable. The challenge is described with great eloquence, clarity and grace here, if I could command every politician in the land to read this blog and the links that follow, and act on it, I would.

There are, of course, WMOADCs* like me who have been able to cling on to a career through a chance amalgam of fortunate career choice, family help and support, the current health of their child and sheer, dogged determination. Not without challenge, guilt or mind-fogging exhaustion but cling on we do. We’re the 16% versus the 60% of mothers of typically developing children who return to work post-baby. We are a distinct subcategory.

Our WMOADC* status is hard fought for and some careless critics may opine that we take on too much. But work we do. For financial security. For sanity. For independence. For normality.

Every mother of a disabled child should have the right to work, but if you’ve ever tried to find a nursery place for a child with severe epilepsy, or who is fed via tube, who can’t move independently or who has a packed schedule of weekly appointments, you’ll know that support from the system to do so is just not there. I give you some facts:

  • Funding for one-to-one support in nursery, beyond the rudimentary 15 hours a week for 3+yr olds is absent. For children who can’t eat, sit up or stay safe without constant adult support there is nothing, nada, unless a parent can fund full-time continuous one-to-one support in nursery themselves.
  • Specialist nannies with experience of managing the needs of complex children are like gold dust. If you can find one, you’ll need your very own gold reserves to cover the cost.
  • There is no ‘wrap around’ care at special schools. Transport provided for disabled children to get to and from school will only collect and drop off to the child’s home, so someone needs to be there to greet them. Oh, and school holiday care? As rare as hen’s teeth.
  • Carers allowance (embarrassingly pitiful as it is) goes poof into thin air the moment you earn more than basic pin money. AKA, the ‘benefits trap’.
  • Overloaded NHS and Local Authority services are not resourced or set up to fulfil the needs of a disabled child and accommodate the diaries of working parents. They’re just not. Not just that, but the system expects and requires that a parent, with legal authority for the child, is present at any appointments where important decisions need to be made. Medical tests, for example.
  • The employment world is still surprisingly hostile in many ways to working parents, even common or garden ones who are not shackled by the inconveniences of disability. Making work work, and making work pay is often a monumental challenge for parents, even without the complications thrown into the melee by disability. Present it with a disabled dependent and all of a sudden doors begin to close.

Work, all to often, just doesn’t work. And the consequences, both private and public, are enormous. Would-be WMOADCs* are catapulted unceremoniously in their ‘other’ net into a downward spiral of home-bound benefit dependency, often against their will.

Of course, our current government (and supporting media) is quite happy to perpetuate the myth that ‘people on benefits’ are to be minimised and scorned, with no consideration for the life path that may have brought them there.

No consideration for the fact that there are mothers all over the country, unable to find a way to return to work after having a disabled child, for whom nursery places are unavailable, specialist nannies beyond the reach of all but the wealthiest, and employers unwilling or unsympathetic to accommodating their needs for flexibility. Mothers for whom work is, in all likelihood, essential to maintaining the family home. Paying a mortgage. Meeting the rent.

All too often, house keys are being handed over in exchange for a place on the council housing list. Debts accrued beyond means. Carers allowance stretched to feeding a family. Housing benefit claimed where once a tax-paying income was earned.

A little-talked about ever decreasing downward spiral. One that is real. Happening right now to families who previously may have sat comfortably in the top 10% of earners in the country. But our voices are largely falling on deaf ears with only the disability-friendly Guardian giving the issue any recent page space .

Us WMOADCs* and would-be WMOADCs* need an ambassador. A high-profile advocate to amplify our voice. We need a manifesto. For support. For common-sense. For change. For mental-health and social cohesion. For the greater economic good.

When I sat down to write this I couldn’t think of a single politician in office who I would trust to take on this baton. Public life is currently found urgently wanting of figureheads with the clout, intelligence and lack of self-involved-puffery necessary to do this issue justice.

I’m sure some may disagree with me on this but in my mind there is, perhaps, only one potential advocate in public life with an inkling of WMOADC* reality. SamCam. Wife to a pretty unpopular PM she may be, but she has first-hand experience of life with a disabled child. She also has first-hand experience of being, for want of a better word, a ‘career woman’. While her circumstances may be enormously privileged, she has the profile and sensitivity to take this issue on headfirst.

Alongside this blog post, I will be writing directly to Samantha Cameron to ask for her input and support. I will use this space to update on how this little line of enquiry goes. Perhaps I’m naive but I simply can’t sit on my bottom and do nothing for the thousands of parent carers pushed aside by a system replete with holes and booby traps.

It doesn’t have to be this way but won’t change without input from influencers and policy makers willing to open their ears and think creatively.

In the meantime, I strongly encourage you to sit down with a large cup of tea (or perhaps gin) and read some of the blog posts my WMOADC* and would-be WMOADC* counterparts have penned.

Nice Work if You Can Get It by Are You Kiddingney
Dear Mr Gove (and other assorted pals) by Gingerbread & Sunshine
How Can Work, Work? by One Off Ordinary
Working…with a disabled child by It’s Small’s World
Work, Kids, Special Needs. Making it Fly by Rosy & Bo

A conversation has been started… The invisible women are stepping forward to centre stage. Watch this space.

* copyright Are You Kiddingney?