Off balance: parents of disabled children and paid work

By Richard Dunstan, Workflex blog editor

Since 2012, the issue of affordable childcare has risen rapidly up the political agenda, and seems set to be a key battleground in the run-up to the General Election on 7 May. All three main UK parties will include a ‘childcare offer’ in their manifesto, and all three routinely stress the importance of paid work – including higher maternal employment – to tackling poverty and other social ills, such as mental ill-health. In short, there is broad political consensus that all parents who wish to work should be able to do so.

However, if achieving any kind of work-life balance is a serious challenge for many  parents – and recent research by the Family & Childcare Trust and a survey of parents by 4Children confirm that it most certainly is – then it’s a challenge that parents of children with a disability or special needs face in spades.

I would love to have paid work, to allow us to do more to help our son and for ourselves as a family, but the flexibility required just isn’t available. That is why I had to give up my job. Mother of disabled three year-old.

The need for my wife and I to split all our available leave to cover our caring responsibilities means that we rarely have any time-off together. Employed father of disabled 15 year-old.

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, such as meningitis. Or one day your teenager is knocked off her bike by a truck, and never walks again.

Such unexpected events happen, every day of every week – and their shock can hit families with tremendous force. Knocked off balance and forced 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.

Off balance, a new Working Families report based on our survey of over 900 parents of disabled children, illustrates both the extent to which such parents value the opportunity to work – for economic, social and other reasons – and the enormous challenge they face in combining their especially demanding caring responsibilities with paid work.

I would love to get back into paid work. I get depression from being stuck at home. Mother of disabled seven year-old.

The great majority of those parents currently not in paid work gave up work specifically to care for their disabled child, but nine out of ten would now like to return to paid work at some level. However, four out of ten have been out of work for at least six years, making it much harder for them to re-enter the labour market. And all but a small minority say that their caring responsibilities would limit them to part-time or (highly) flexible work. Yet there is an acute shortage of quality, part-time or otherwise flexible vacancies.

Of those in work, two-thirds have refrained from seeking promotion, declined promotion, or accepted demotion in order to be able to balance work and their caring responsibilities.

Combining work and caring is very challenging. There is never any flexibility around the timing of my son’s hospital and other appointments. I just need to drop everything and be there. Employed mother of disabled two year-old.

Seven out of ten parents describe finding suitable, affordable childcare as ‘very difficult’ or ‘impossible’, with as many as one in two relying heavily or exclusively on ‘free’ childcare provided by family or friends. There is clearly a significant lack of specialist childcare capable of meeting the sometimes complex needs of disabled children, and even where it is available it is often significantly more expensive than that for non-disabled children. Almost one in three of in-work parents who pay for their childcare are paying more than £10 per hour – more than twice the national average hourly cost.

Only one local provider offers childcare suitable for my son, but at £16 per hour this is far too expensive. Out of work mother of disabled one year-old.

However, to date, none of the three UK main political parties has explicitly acknowledged this especially harsh ‘childcare crunch’ and other major barriers to paid work faced by parents of disabled children – let alone developed specific policies aimed at lowering these barriers within their policy programme. This has to change.

Off balance calls on all political parties to commit to:

  • Creating a statutory right to a period of adjustment leave, to enable families to weather relatively short-term life crises such as the onset of disability of a partner, parent or child, or other major change in their caring responsibilities, without having to give up work. Cost analysis carried out for Working Families by management consultants Oliver Wyman indicates that a legal right to a six-week period of adjustment leave for parents of disabled children could generate a net gain to the economy of £500 million per year.
  • Adopting a flexible by default approach to job design and recruitment in the public sector, so that all jobs in central and local government are advertised on a flexible basis unless there is a specific, good business reason not to. Ministers should also act and recruit business leaders as ‘flexible working’ champions, and should encourage private sector employers to adopt the Happy to Talk Flexible Working strapline.
  • Appointing a junior minister with specific responsibility for urgently driving up the national supply of suitable, good quality, and affordable childcare for children with a disability or special needs.




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