A constant compromise: life as the working parent of a disabled child

By Richard Dunstan, Policy & Parliamentary Campaigns Officer

Previously on this blog, I have written about how (almost) no-one chooses to become the parent of a disabled child – serious illness or accident can strike any child, at any time.  And, when it does, the shock can hit families with tremendous force.

My son Sam was just five months old when, in December 1999, the invisible and relatively harmless bacteria he was carrying in his nose made the rare – and catastrophic – leap to the lining of his brain.  At any one time, millions of us carry Streptococcus pneumoniae in our noses.  We might get a sniffle, a sore throat, or a mild ear infection.  But Sam got pneumococcal meningitis.

Joanna and I twice took Sam to A&E, only to be reassured that it was just a virus, that we should carry on with the Calpol.  By the time we returned a third time, after yet another sleepless night, Sam was already gravely ill.

The three of us spent the next month in hospital – two traumatic, roller-coaster weeks in intensive care, then two weeks on an isolation ward.  Our jobs, and almost every other aspect of our normal lives, were simply tossed aside.  We slept beside Sam, in chairs or on the floor.  And we waited, whilst the NHS belatedly worked its magic.

Finally – the Millennium celebrations having passed us by – we brought Sam home: hemiplegic, epileptic and profoundly deaf.  Our lives were never ‘normal’ again.

For the next few months, Sam required constant care, involving several hospital or home sessions a week with doctors, physiotherapists, audiologists and other healthcare workers. My temporary work contract had run out whilst we were in hospital, so I became Sam’s carer.  Then, when I got a new job, Joanna went part-time.  We were fortunate: not only were our employers extremely tolerant of our frequent absences for hospital and other healthcare appointments, but we had substantial time support from friends and family, especially Sam’s two grandmothers.  Without their time commitment, we simply would not have coped.

It is at this stage that many working parents – and especially working mothers – drop out of work altogether to care for their newly disabled child.  Only 16 per cent of mothers of a disabled child are in work, compared to more than 60 per cent of mothers generally.  A legal right to paid or even unpaid ‘adjustment leave’ would enable many such parents to weather the storm that has broken over their heads, with the security of having a job to return to when life becomes a little easier.

Months passed, and there was little if any let up in the number of hospital and home healthcare visits.  Whilst the intensity of some of Sam’s provision, such as physiotherapy, gradually declined as his physical condition improved, Sam had now been referred to Great Ormond Street to receive a cochlear implant – essentially a bionic ear – and this required numerous appointments culminating in major surgery.  Both Joanna and I worked flexible and compressed hours, and prayed our jobs would continue – who else would want to employ such shirkers?

Years passed, Sam gained a sister, and our precarious work-life compromise continued.  For reasons the doctors never quite established, Sam was still not sleeping through the night – he would not do so until he was seven – and there were many times that sheer exhaustion led us both to consider giving up work. But we enjoyed our jobs, and valued the hours spent as a ‘normal’ adult. The time came when we realised we needed more support than our ageing mothers and other family could provide.

However, a place in a standard nursery was out of the question.  Apart from his physical and communication difficulties, Sam’s behaviour was challenging – he demanded constant attention, and frustration frequently led to melt-down.  Some nurseries would take Sam if we could pay for a one-to-one care assistant, but we simply couldn’t afford that.  And some nurseries didn’t even offer that option – they just said ‘no’. Two-thirds of families with disabled children pay a premium for their childcare, and for many others the lack of appropriate, affordable childcare creates an insurmountable barrier to remaining in, or returning to, the labour market.

Once again, we were fortunate. Through a friend, we found an angel of a childminder who could take both Sam and his sister, at the normal rates.  For the next few years, Reena became a fifth member of our family.

The next challenge was primary school.  Deafness being a low-incidence disability, there are very few mainstream schools with a hearing impaired unit (HIU), and the one we eventually chose as the most appropriate for Sam was on the far side of London.  The hour-long trek from home would be a pain (and it was), but the school’s HIU had a fantastic reputation and its unusually large size gave Sam a good peer group.  For the next six years, the HIU was our second home, and its teachers and therapists our second family.

By now it was abundantly clear that Sam will never be troubling the Nobel Prize Committee. But, thanks to the commitment and brilliance of our second family, he does have a future.  In 2010, the wonder that is the British education system presented us with just one practicable option for secondary school – a residential deaf school – and in September that year we did our best to hide our heartbreak as we deposited Sam at his new school-cum-home.

And that’s where we are today.  The weekly boarding has remoulded our family life, as well as breaking our hearts.  But both Joanna and I have remained in work over the past 14 years, and Sam seems happy, increasingly self-confident, and … well, a teenager.  Just this weekend, we had to shout at him to turn his music down – don’t you just hate that Gangnam Style?

And, for that as well as much else, we are grateful.

[This article first appeared in the Winter 2013/14 issue of waving not drowning, the Working Families newsletter for parents and carers of disabled children who work or wish to work, available here.]

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Pierced by the winged shaft of fate

By Richard Dunstan, Policy & Parliamentary Campaigns Officer

On Monday, Working Families held its first ever policy conference, in Westminster.  More than 70 policy and legal specialists – and one Baroness – attended to hear two panel discussions about what future policy on work and families should look like.  And, for the first session, I joined what the conference chair, Guardian journalist Zoe Williams, generously described as a ‘Dream Team’ panel for manifesto writers.

After Alison Garnham of Child Poverty Action Group suggested that the next government needs to “commit to ending child poverty, stimulate maternal employment, restore Child Benefit, and fix Universal Credit”, Anand Shukla of the Family & Childcare Trust made a pitch for “more parental choice on childcare”.  And, noting the introduction of hefty, upfront tribunal fees in July 2013, Sally Brett of the TUC warned that “we have to make sure we’re not just talking about paper rights”.

Laura Dewar of Single Parent Action Network called for more government action to tackle the “lack of access to flexible working at job entry level and the dire shortage of quality part-time jobs”, which combine to deny many single parents any real chance of a good work-life balance.  And, after Kathy Jones of the Fatherhood Institute called for “father-inclusive practice” in all public services, I made my two-minute policy pitch on behalf of a group of parents that is consistently overlooked by policy makers: parents of disabled children.

For if achieving more than a barely tolerable work-life compromise is a serious challenge for many working parents – and it is – then it’s a challenge that parents of disabled children face in spades.  And, of course, some parents of a disabled child are also a single parent.  And some are themselves disabled.  My friend Angela is a disabled single parent of a disabled child, and when I’m struggling with my own work-life balance I try to remember how easy I have it compared to Angela.

The main point I sought to make to the conference is that (almost) nobody chooses to become the parent of a disabled child – it can happen to anyone, at any time.  One day you have a healthy, bubbly toddler – and the next day she is struck down by one of childhood’s rare but vicious illnesses, such as meningitis.  Or one day a doctor tells you the eccentric and sometimes challenging behaviour you’ve so far considered to be just your six-year-old’s attractively individual nature is in fact a clear sign of his autism.  Or one day your bright and engaging teenager is knocked off her bike by a truck, and never walks again.

Such tragic, unexpected things happen, every day of every week – and their shock can hit families with tremendous force.  Knocked off balance and having to learn a whole new language of medication, treatment and care, it can take time for families to make the adjustments that, in the long-run, will enable them to weather the storm that has broken over their heads.

So – in common with Sam Smethers of Grandparents Plus – my policy pitch to the conference was for a statutory right to a period of ‘adjustment leave’.  Perhaps combined with a phased return to the original – or even a new – work pattern, this leave could be unpaid, or better still could be paid at the same rate as maternity and paternity leave.  But either way it would enable parents and carers to adjust to their new life, and put long-term care in place, whilst having the financial security of a job to return to when a little further down the road.

Such adjustment leave could benefit not only working parents of a newly-disabled child, but anyone experiencing one of the various shocks that life deals out to many of us at some stage: a bereavement; the serious illness of a partner or child; relationship breakdown; or the sudden, unanticipated decline of an elderly parent.

The idea that disability is something that can and does happen to anyone having been my theme on Monday, last night I was gratified to find the very same point being made by Bill Shorten, leader of Australia’s Labor Party and Leader of the Opposition, at a Westminster reception held by law firm Slater & Gordon.  As minister for disabled people and children’s services in the government led by Kevin Rudd between 2007 and 2013, Shorten was primarily responsible for the creation of Australia’s National Disability Insurance Scheme.

And last night, Shorten articulated, more clearly and powerfully than I’ve known any British politician since the great Jack Ashley do, how disability is not something that happens to ‘others’ who can then be separated from the rest of society and forgotten.  Rather, we are all at risk of being pierced by “the winged shaft of fate”, at any time, and we should bear that in mind when designing legislative provisions and public services.