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.