photo credit: Honza Soukup via photopin cc

88% of unemployed parents of disabled children express a strong desire to return to work, according to a new survey published today.

However, the survey of over 900 parents by the Working Families charity reveals how parents of disabled children face enormous challenges in balancing work and caring responsibilities.

The findings expose the extent to which parents of disabled children value the opportunity to work but face a lack of flexibility in the jobs market, with 77% struggling to find a job with the right number of hours. 87% said finding a job with a flexible work pattern was a major barrier.

Almost four in ten parents had given up work more than six years ago, making their future employment prospects even more difficult. The Working Families charity says employers are missing out on a range of skills and talents.

79% of unemployed parents said they had no choice but to give up work soon after their child was diagnosed. According to the Working Families charity, this common occurrence could have been avoided by employers allowing parents time to adjust to change in 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”, said one parent.

Another parent said: “I gave up work when my son was diagnosed and it was around five years before I could consider going back to work. Then four years of looking for a job that was
flexible enough.”

A shortage of part-time flexible employment opportunities means parents of disabled children will struggle to return to work, says the Working Families charity.

The majority of in-work parents surveyed by the charity reported facing a ‘difficult’ or ‘impossible’ battle in finding suitable and affordable childcare, due to a significant lack in specialist childcare providers. Where it was available, prices were significantly more expensive than for non-disabled children’. One parent reported being asked to pay £16 per hour by the only provider in their area.

“Only one local provider offers suitable childcare for my son, but at £16 per hour this is far too expensive”, she said.

Working Families is calling on all parties to commit to 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’.

A cost analysis carried out on behalf of the charity by a leading consultancy firm, suggests this could result in a potential annual net gain to the economy of up to £500 million.

Working Families says a ‘six week period of adjustment leave, paid at Living Wage levels should be introduced as a matter of urgency’.

Jobs in the public sector should be ‘flexible by default’, says Working Families. Government ministers should also encourage private sector employers to adopt a ‘Happy to Talk Flexible Working’ approach to employing new staff.

The charity is also calling for the appointment of a junior minister with responsibility for increasing the availability of affordable childcare for disabled children.

Sarah Jackson, CEO of Working Families, said: “More needs to be done to support the parents of disabled children to either stay in work or to re-enter the workforce.

“Childcare has repeatedly been shown to be a major barrier to work for these parents and we call on the next Government to commit to appointing a minister with specific responsibility for urgently driving up the national supply of suitable, good quality and affordable childcare for disabled children.

“Furthermore, we have shown that the introduction of a legal right to paid adjustment leave on or soon after diagnosis of a child’s disability or special need would have a positive outcome not only on the family’s economic future but on the state’s as a whole.”

Related News: Labour Pledge New Support For Family Carers ‘Pushed To Breaking Point’


  1. It’s ironic that if a professional organisation takes care of a disabled child it is not only work, but skilled work, for which you pay more than double the minimum wage, but should the parent of the child take care of it, the parent is “not working”.

  2. For a parent of a disabled child, or grandparent in my case, the ability to work is entirely dependent on the level of the child’s disability. That has nothing to do with the ‘desire’ to work, which is likely to be virtually unanimous.

    With a child such as our grandson, Warren, there is no practical way in which my wife or I would be able to work whilst he is in our full-time care – as child or adult. He, like others needs 24 hour care, assessed as 2:1 at all times.

    Warren is often awake until 4am, shouting, singing, clapping, etc., which means sleep is impossible. To be deprived of sleep in this way takes a toll on what can be accomplished during the day in terms of normal household tasks, never mind doing a job as well.

    We know of quite a few families in a very similar position to ourselves, and the level of care their children need also precludes the ability to work. Where one parent stays at home, the high-care needs of the child often means the working partner may have to give up work as well.

    Affordable childcare for the more profoundly disabled children is a pipe-dream. A few phone calls have just confirmed this amongst families like us.

    To take care of disabled children on a regular basis demands a masively higher level of committment to the child than, say, caring for a non-disabled individual. Carers begin with enthusiasm, but after a few weeks or months, find they are not at all suited to the work. Again, this is a fairly unanimous opinion.

    The special school Warren attends has a high turnover of classroom assistants for the same reason… the job is far more complex than first appears, the responsibility greater.

    I would suspect that the £16 per hour fee quoted above is an ‘agency’ fee. Even though agencies provide care for disabled children, the staff [as we experienced], are just as incapable, and end up just ‘going through the motions’ when on shift.

    Most people we know, looking after disabled children, would say that with a very few exceptions, finding suitable care is virtually impossible at any price.

    Giving a ‘grace period’ at work to ‘adjust’ to a disabled child is bordering on insulting. I would take issue with the charity on this, unless they are talking about childcare for those without very serious disability.

    The whole ‘establishment’ attitude towards kinship care requires serious overhaul in all areas. Too many families are forced to rely on benefits, with all the problems associated with that.

    We need help, understanding and not researching by ‘leading consultancy firms’.

    I may seem overly critical, but that’s where experience has led me.


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