21/08/2017 07:55 BST | Updated 21/08/2017 07:55 BST

Juggling Work And Caring For Your Child Can Be Tough - But What If Your Child Is Disabled?

For most working parents, finding suitable, affordable childcare and finding or holding on to reasonably well-paid, part-time or otherwise flexible work, are a challenge. But they're challenges that parents of disabled children face in spades.

Our 2015 Off Balance study found that seven out of ten parents describe finding the right childcare as 'very difficult' or 'impossible'; and for the overwhelming majority, their caring responsibilities would limit the pattern of work they could undertake.

And our more recent Modern Families Index found that for more than half of parents of a disabled child, their caring responsibilities have had an impact on their ability to work - which could include taking on lower paid work, working less hours than they want or leaving the labour market altogether.

It's a truism that becoming the parent of a disabled child is rarely a matter of personal choice - it can happen to anyone, at any time, not just at the time of birth. One day you have a healthy toddler - and the next day he is struck down and left disabled by one of childhood's rare but vicious illnesses. Or one day your teenager is knocked off her bike by a truck, and never walks again.

Such tragic, unexpected events 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, staying in work can feel impossible. This can lead to long term unemployment, with all its associated economic and social costs. It's no wonder that disability is a risk factor for living in poverty.

So we've produced a brand-new video - Life Paths: Work and caring for your disabled child - to let parents of disabled children know about the employment rights that could help them stay in their job, and explain the advice and support Working Families provides.

We know it can take time for families to make the adjustments that, in the long-run, will enable them to overcome the challenge of their child's diagnosis. During the general election campaign, we were delighted the Conservative Party committed to a new statutory entitlement to carer's leave, enabling people to take time away from work without having to give up their job. This policy has the potential to support millions of carers in the UK.

For parents of disabled children, it could deliver the 'adjustment leave' we have long called for; enabling families to make the arrangements that mean they can support their child without being forced to give up work. The government must consult on this policy without delay - so voluntary sector organisations like us can explain how their beneficiaries would benefit.

Of course leave from work is only one piece of the puzzle. We know that there are still issues with affordability and availability of suitable childcare, and with finding jobs that have the right flexibility. That's why we are calling on parents of disabled children to complete our survey - because we want to shine a light on their experiences - and make the case, to government and to employers - for change.

Visit http://www.workingfamilies.org.uk/wavingnotdrowning to watch the video and take the survey.

Working Families is the UK's work-life balance charity. We support and advocate on behalf of working parents and carers, and work with employers to create workplaces which encourage work-life balance for everyone.http://www.workingfamilies.org.uk

Our Waving not drowning network provides advice and support and campaigns for a better deal for, parents of disabled children and carers of adults who want to combine paid work with their caring responsibilities. http://www.workingfamilies.org.uk/advice/wavingnotdrowning