Finding Flexibility survey 2014

By Richard Dunstan

Earlier this week, Working Families launched our Parents of Disabled Children Survey 2014. The survey, which in 2012 led to our influential Finding Flexibility report, seeks parents views on the barriers to entering and remaining in the workplace whilst caring for a child with special needs.

More than 1,000 families completed the survey in 2012, revealing a deeply worrying pattern of unemployment and under-employment, with many parents forced to decline promotion, accept lower-skilled work, reduce their hours of work, or leave the labour market altogether in order to care for their disabled children. Furthermore the prospects of those who give up work altogether being able to return to the labour market are very poor.

While finding suitable and affordable childcare was seen by parents as the main barrier to paid work, survey respondents reported many other obstacles: taking time off to deal with hospital appointments and school emergencies; inflexible access to health, care and education services; a lack of part-time and flexible work options; the complexity of the social security system; and a lack of focused services to support those who wish to return to work. Of the more than 1,000 respondents:

  • 27 per cent were not in paid employment
  • 82 per cent of those not in paid employment had given up their job in order to care for their disabled children
  • 50 per cent of those not in paid employment had given up work at least six years ago, making it very difficult to get back into the labour market
  • Only 38 per cent of those in paid employment were working 30 or more hours per week
  • 61 per cent of those in work had changed or tried to change their pattern of work, and 56 per cent had changed or tried to reduce their hours, in order to manage their caring responsibilities
  • 64 per cent of those in paid employment had refrained from seeking promotion, had declined promotion, or had accepted demotion in order to balance caring and paid work.

Such findings from our 2012 survey were echoed in the recent report of the Parliamentary Inquiry into Childcare for Disabled Children, led by MPs Robert Buckland and Pat Glass. Of the almost 1,200 parents who responded to the Inquiry’s on-line survey:

  • 41 per cent said their children have not been able to access the full 15 hours of free entitlement for early education for three- and four-year-olds
  • 38 per cent reported paying £11-20 per hour for their childcare, and five per cent reported paying more than £20 per hour.

As the Children’s Commissioner for England, Maggie Atkinson, notes in a foreword to the report:

The findings of this Inquiry are not encouraging. Today, only one quarter of local authorities say they have enough childcare [in their area] for disabled children. This becomes more acute for older disabled children. Parents report it is more difficult in both finding and paying for childcare for disabled children compared to non-disabled children. This means that too many disabled children and young people are missing out on not only important educational opportunities but also opportunities to socialise with other children, play and have fun – all of which they have a right to under the United Nations Convention on the Rights of the Child.

The report itself concludes that children’s rights, the challenge of eliminating poverty and basic fairness all demand that we take the task of achieving an inclusive childcare system seriously. No child’s horizons and opportunities should be narrowed by their first encounters with education and activities outside the school system. No parent should be excluded from the opportunity to work. It simply makes no sense for disabled children to be included in mainstream education but excluded from mainstream childcare. And the impact on individual families is set out in this powerful article in The Independent by Stacie Lewis, one of five mothers who gave oral evidence to the Inquiry.

Responding to the Inquiry report, the shadow childcare minister, Lucy Powell MP, noted that “parents of disabled kids have so much pressure in their lives that the last thing they need is another battle over childcare”. Hear hear to that. Ms Powell further noted that “the report provides a prescription for government action” and “definitely gives me the foundation to move things forward in government”.

Over the coming months, Working Families, along with the other organisations that supported the Parliamentary Inquiry – Contact a Family, Every Disabled Child Matters, and the Family and Childcare Trust – will be working to get all three main political parties to commit to addressing the Inquiry report’s recommendations, and in particular its call for “a cross-departmental action plan and funded programme to ensure that all disabled children and young people can access affordable and appropriate childcare”. And you can help us in that work by completing our Finding Flexibility Survey 2014 – click here to access the survey on-line.  The findings of the survey will be fed directly into our lobbying work.

(If you would like a paper copy of the survey, please contact the Working Families office).

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Looking Back: reflections on being the disabled child of a working mother

By Zara Todd

This is the first time I have ever been asked what it was like being the child of a working parent. I find that interesting because I have spent my entire life as a disabled person being asked questions about myself and my experience. At 28, more aspects of my life have been documented than the majority of people, but the fact that my mother worked has never really come up. I guess, up until this point, people have made the assumption that either my mother didn’t work (I’m from a single parent family) or that my mother’s working has had little effect on my life for good or ill.

Both of these assumptions are wrong. My mum worked full-time from when I was born until I was aged 10 or 11, at which point she took early retirement. While I’m pretty certain that having a disabled child encouraged my mother to retire early, I know that I wasn’t the sole factor in her retirement. Equally, I can’t say that having a working parent had little effect on who I am, what my childhood was like and my relationship with my mum because it has, both positively and negatively.

Having a working parent, regardless of whether you are disabled or not, has an impact because you have to adapt to a wider range of people and to change itself. In my case I was too young to remember when my mum went back to work. It was before my impairment was diagnosed. This is significant because I suspect my mother would have found it much more difficult to find childcare for me had my impairment been known. As it was, as I got older, the harder and harder it was to find childcare because the gap between myself and my non-disabled peers became increasingly significant. A two- or three-year-old using crawling as their major method of transportation is just about acceptable, but when you get to seven or eight people start to worry.

When I was little I had a childminder who I loved to bits and often accidentally called ‘mummy’ and while I can’t really remember much, I look back at that time positively. Unfortunately, between the ages of four and eight I can remember not being very happy that my mummy worked while a lot of the children around me got to spend a lot of time with their parents. I was certainly jealous that many of my classmates didn’t have to go to after-school clubs, work out who they were going to that afternoon or get shop bought cakes for bake sales.

While I had some bad experiences with nurseries and childcare, who were not careful with their charges and did not listen to information (I vividly remember being force-fed meat and fish at the age of four or five because childcare staff didn’t understand what a vegetarian was and thought that I was just being difficult), I also had some good times and remember how proud I was of my mum whenever someone asked me what she did for a living. I don’t feel like I missed out massively because my mum worked but I do sometimes wonder whether my mother feels like she missed out on a lot of my childhood.

I think growing up with a working parent has given me some great skills. I adapt very well to change and enjoy meeting new people. Being in environments where you come into contact with a diverse range of people helped me understand at a very young age that not everybody has the same values, expectations and experiences that my family does. I’d like to think that heavy exposure to new people as a young child has made me a pretty awesome judge of character, and growing up I rarely got homesick. Particularly as a disabled child having a working parent has meant that I had to develop at an early age the ability to explain my condition, what help I needed and what I could and couldn’t do. However, this has just prepared me for adult life where I spent a fair amount of my time having to give the same explanations.

One of the things I found hardest about being a disabled child of a working parent has definitely been seeing and hearing other people judge my mother for her decision to work when she had a ‘severely’ disabled child. My mum would have worked whether I was disabled or not. It was a necessity and a decision I am sure she spent a lot of time agonising over.

It saddens me that many people I’ve come across in my life have judged her for this decision, particularly because of my impairment. In a society which is trying to be inclusive and equal, systems, structures and people should be able to accommodate working parents with disabled children without it being necessary for a parent to give up work.

[This article first appeared in the Winter 2013/14 issue of waving not drowning, the Working Families newsletter for parents and carers of disabled children who work or wish to work, available here.]