Towards a better work-life balance; working and caring for a disabled child

Published: 8 Dec 2017

By Julie McLynchy, volunteer at Working Families and parent of a disabled child.

Looking back, I don’t know how I did it. A widowed single parent of a disabled child, I was working long hours, running a tribunal appeal against my daughter’s Education, Health and Care (EHC) Plan and her school placement; and running her to numerous therapy and medical appointments that sometimes involved several hours of travel.

I was in a job I loved in a career I’d invested in for 20 years. I wanted it to work.  I had supportive managers and colleagues and flexible working arrangements.  Without these I simply couldn’t have returned to work at all after my daughter was born.  I worked 4 days a week, including one day a week from home and I could flex my hours around my daughter’s appointments.

But my job involved frequent late nights and early mornings in the office, often at short notice and with a commute on top. There was no paid childcare available to meet my daughter’s significant needs, so my parents continually stepped in to help; and I knew that, as they got older this wasn’t going to be sustainable.  But mostly I was exhausted – my job was so demanding that even when I wasn’t in the office I was sitting in front of the laptop at home until midnight almost every night, including weekends.  When I wasn’t working on my job I was working on my daughter’s education tribunal appeal – a 3-year process from start to finish which was mentally and emotionally draining.

‘My experience is not that unusual’

My experience is not that unusual among parents of disabled children. Only 16% of mothers of disabled children are in paid work (compared with 61% of mothers of children without disabilities)[1], – which is hardly surprising when you consider everything else they contend with just to stay afloat.  And those of us who are in work face a perpetual juggling act to manage work and our caring responsibilities.  All parents face this, of course.  But when your child is disabled, you have fewer (or no) childcare options available to you, especially when you suddenly need childcare at short notice.  Friends who would happily step in and collect your child from school if you’re delayed at work can’t do that when adaptations like wheelchair access, a specialist car seat and special seating at home and so on are needed.

Earlier this year I attended Working Families focus group for parents of disabled children who work or want to work. I heard stories of exhausted parents for whom support such as appropriate childcare for their children, some flexibility from employers to enable them to work around medical and therapy appointments, better timing of those appointments and more good quality part time jobs, would make all the difference.  Of course, there will be parents who decide that staying at home is the best option for their family.  But our focus group suggests that many parents would dearly love to return to paid work if they could.

The annual cost of bringing up a disabled child is three times greater than that of bringing up a child without disabilities. [2]  Taken together with the small number of mothers of disabled children who are in paid work, and we now have a situation where a shocking 40% of disabled children in the UK live in poverty.[3]  Almost a third of those children are classified as living in severe poverty.[4]  There must be practical ways in which we can, as a society, change the way we work and provide services to families of disabled children so that parents of disabled children can stay in paid work – benefiting their family finances, retaining their skills in the economy and helping to maintain their emotional wellbeing.

‘I haven’t looked back since’

For me, I took a deep breath a year ago and left the job I loved but which was no longer really working for me or my family. I haven’t looked back since.  I’ve done some freelance work alongside volunteering with Working Families, including designing their new Off Balance survey, which aims to find out more about the issues that parents of disabled children experience when seeking to get into or stay in paid work.

My education tribunal appeal was successful and my daughter is now settled in her new school. And I’ve just started a new job with a new employer, working fewer hours as part of a job share.  It’s enabling me to maintain my career while being around more for my daughter and means I rely less on my parents.  It’s early days but so far it feels positive.  I’m lucky – I have the skills and type of job that mean I can work in this way.  It’s time that we ensured that other parents of disabled children can make choices about combining paid work and caring that are right for them.

Notes

[1] Contact a Family, 2014

[2] Contact a Family, 2012

[3] Children’s Society, 2011

[4] Children’s Society, 2011

We run the Waving not drowning network for parents of disabled children.