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).

New research by Contact a Family highlights childcare crisis faced by parents of disabled children

By Richard Dunstan, Policy & Parliamentary Campaigns Officer

New research by Contact a Family shows that mothers of disabled children are locked out of the labour market due to a lack of affordable and good quality childcare.

childcare trap infographic 540x550

Based on a survey of 2,056 mothers of a disabled child, the research found:

  • 72 per cent say they have cut back or given up work because of childcare problems
  • 39 per cent don’t use childcare because it is too expensive
  • 82 per cent of those who do use childcare, pay above average (£3.93 per hour) childcare costs, with 31 per cent paying £11-£20 per hour (8 times more towards childcare costs than other families)
  • 33 per cent don’t use childcare because staff don’t have the right experience.

Amanda Batten, Chief Executive of Contact a Family, says:

“There is a childcare crisis for families with disabled children, which means many qualified and skilled mums are forced to give up or limit their careers. The government has implemented many policies to help mums get back to work. But our research shows many of the measures don’t help mums of disabled children. The new measures, while welcome, are not designed to tackle the additional costs of childcare for disabled children due to the need for specialised care or the poor disability skills across the childcare workforce.”

Contact a Family is calling for:

  • An increase in the upper limit of eligible childcare costs for one disabled child to £300 per week under working tax credit and later under Universal Credit.
  • A national disability childcare fund to develop a skilled workforce and increase the supply of childcare places for disabled children/children with SEN.

Jennie, mum to Ben, who has quadriplegic cerebral palsy, says:

“In order for Jack to be at nursery, he needs 1:1 care. His condition means he cannot move independently at all, feed himself or access toys or activities or play with his many friends without support. Since he started at nursery we have tried three different funding pots to get 1:1 support for him. Now the nursery has to apply every 16 weeks for 1:1 funding. It’s a source of major anxiety, because every 16 weeks I face the fact that I might have to give up work with no notice period. Every 16 weeks, I face the possibility of us losing our home.”

The research findings have been submitted to the Parliamentary Inquiry on childcare for disabled children, launched last month by Robert Buckland MP and Pat Glass MP.

Parliamentary Inquiry to shine a spotlight on childcare for disabled children

By Richard Dunstan, Policy & Parliamentary Campaigns Officer

Hannah is mother to seven-year-old Rosy, who has autism and learning difficulties. Hannah says that appropriate, affordable childcare is a real problem in her area, and is getting worse:

“There is simply not enough childcare that is appropriate for children with special needs. You can’t share pick-ups and play-dates after school, or exchange childcare in the way that you can with children who do not have special needs or disabilities. I would like Rosy to be included in a mainstream after-school club or holiday play scheme, so that she can go with her brother who does not have special needs. But I have to find private provision prepared to take Rosy, and then look for a carer to go with her, which makes it expensive.”

Sadly, the problems faced by Hannah are all too common in Britain today. And, despite the growing political and public debate around childcare –  in recent months, barely a week has gone by without the announcement of new research or survey findings on the subject  –  the childcare needs of parents of disabled children has received almost no attention. Yet we know that:

  •  66 per cent of parents surveyed have paid more for childcare for disabled children than for non-disabled children.
  •  Parents with disabled children report paying two to three times as much as the standard hourly childcare rate – up to £20 per hour – compared to a national average of £4.25 for a child aged two to four years old.
  • Only 28 per cent of local authorities in England say they have enough childcare for disabled children.
  • Just 40 per cent of parents of disabled children believed that childcare providers in their area could cater for their child’s condition.

No wonder then, that only 16 per cent of mothers of a disabled child are in paid work, compared to more than 60 per cent of mothers generally. And that families with a disabled child are 2.5 times more likely to have no parent working for more than 16 hours per week. In the words of Sarah, mother to “a lovely non-toddling toddler with an undiagnosed genetic condition”:

“I worked long and hard to get a career that I care about.  It enabled me to give my son financial stability and a plan for the future.  It enabled me to have time away from the immense responsibility of being a ‘carer’.  It gave me a chance to miss him and remind me how very precious our time together is.  But despite an epic battle to rival Waterloo, I have had to leave my job.  Why?  Because there was absolutely zero affordable childcare available to me, even on a three day per week basis. This is purely because of my son’s disabilities.”

As Sarah concludes, this is “just not right”.  But it’s also a false economy. Britain needs women like Sarah to remain in the labour market if we are to recover from the worst economic recession in living memory.  And for that to happen, parents like Sarah and Hannah need local access to childcare that is appropriate, affordable, and of good quality. Such childcare helps children form new friendships, supports participation and good educational outcomes, and helps parents to balance caring, their own well-being, and work.

That’s why MPs Robert Buckland and Pat Glass have just launched an independent Parliamentary Inquiry, to shine a spotlight on the problems faced by families with disabled children, and to ensure that the issue of childcare for disabled children becomes part of the on-going political and public debate about childcare more generally.

Robert and Pat know, from their own experience, how disabled children and their families benefit when services are inclusive and meet their needs. And they know how important it is that children with additional needs are well-served by childcare provision going into the future.

The Inquiry is supported by Contact a Family, Every Disabled Child Matters, the Family & Childcare Trust, and Working Families, and welcomes evidence from families, professionals, and stakeholder organisations. It is expected to report by the end of July – that is, in time to feed into the party manifestos for the General Election in May 2015. You can find out more, including details of how to submit evidence (by 9 June), on the Inquiry’s website.

The launch of the Inquiry has already sparked several fabulous posts by blogging parents of a disabled child.  MrBoosMum writes:

“Let’s make ourselves heard in this Inquiry. Let’s tweet and write to our MPs. Let’s complete the survey. We have evidence aplenty. We deserve to be listened to, because our kids deserve to be heard and seen and accepted. Because inclusion should be a reality rather than an aspiration.”

Hear hear to that. And Sarah – already quoted above – says in her latest post:

“This Inquiry is our chance to speak up and be heard.  Our chance to bring about change.  So let’s make it count.  Let’s make sure that the next generation of parents stepping into our already challenging shoes are not faced by the same frustration, financial fears and inequality.”

But I’m going to end with the words of mother and blogger Itssmallsworld, who speaks for tens of thousands of parents when she says:

“We want to work, we want to be able to afford to work, we would like to contribute. We have years of experience stored up to be used. We have something to give. Let us. Enable us. Because the value you will gain from us – emotionally, financially – has got to, just got to, outweigh the costs – emotional, financial – of neglecting us.”

 

 

 

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.]

A constant compromise: life as the working parent of a disabled child

By Richard Dunstan, Policy & Parliamentary Campaigns Officer

Previously on this blog, I have written about how (almost) no-one chooses to become the parent of a disabled child – serious illness or accident can strike any child, at any time.  And, when it does, the shock can hit families with tremendous force.

My son Sam was just five months old when, in December 1999, the invisible and relatively harmless bacteria he was carrying in his nose made the rare – and catastrophic – leap to the lining of his brain.  At any one time, millions of us carry Streptococcus pneumoniae in our noses.  We might get a sniffle, a sore throat, or a mild ear infection.  But Sam got pneumococcal meningitis.

Joanna and I twice took Sam to A&E, only to be reassured that it was just a virus, that we should carry on with the Calpol.  By the time we returned a third time, after yet another sleepless night, Sam was already gravely ill.

The three of us spent the next month in hospital – two traumatic, roller-coaster weeks in intensive care, then two weeks on an isolation ward.  Our jobs, and almost every other aspect of our normal lives, were simply tossed aside.  We slept beside Sam, in chairs or on the floor.  And we waited, whilst the NHS belatedly worked its magic.

Finally – the Millennium celebrations having passed us by – we brought Sam home: hemiplegic, epileptic and profoundly deaf.  Our lives were never ‘normal’ again.

For the next few months, Sam required constant care, involving several hospital or home sessions a week with doctors, physiotherapists, audiologists and other healthcare workers. My temporary work contract had run out whilst we were in hospital, so I became Sam’s carer.  Then, when I got a new job, Joanna went part-time.  We were fortunate: not only were our employers extremely tolerant of our frequent absences for hospital and other healthcare appointments, but we had substantial time support from friends and family, especially Sam’s two grandmothers.  Without their time commitment, we simply would not have coped.

It is at this stage that many working parents – and especially working mothers – drop out of work altogether to care for their newly disabled child.  Only 16 per cent of mothers of a disabled child are in work, compared to more than 60 per cent of mothers generally.  A legal right to paid or even unpaid ‘adjustment leave’ would enable many such parents to weather the storm that has broken over their heads, with the security of having a job to return to when life becomes a little easier.

Months passed, and there was little if any let up in the number of hospital and home healthcare visits.  Whilst the intensity of some of Sam’s provision, such as physiotherapy, gradually declined as his physical condition improved, Sam had now been referred to Great Ormond Street to receive a cochlear implant – essentially a bionic ear – and this required numerous appointments culminating in major surgery.  Both Joanna and I worked flexible and compressed hours, and prayed our jobs would continue – who else would want to employ such shirkers?

Years passed, Sam gained a sister, and our precarious work-life compromise continued.  For reasons the doctors never quite established, Sam was still not sleeping through the night – he would not do so until he was seven – and there were many times that sheer exhaustion led us both to consider giving up work. But we enjoyed our jobs, and valued the hours spent as a ‘normal’ adult. The time came when we realised we needed more support than our ageing mothers and other family could provide.

However, a place in a standard nursery was out of the question.  Apart from his physical and communication difficulties, Sam’s behaviour was challenging – he demanded constant attention, and frustration frequently led to melt-down.  Some nurseries would take Sam if we could pay for a one-to-one care assistant, but we simply couldn’t afford that.  And some nurseries didn’t even offer that option – they just said ‘no’. Two-thirds of families with disabled children pay a premium for their childcare, and for many others the lack of appropriate, affordable childcare creates an insurmountable barrier to remaining in, or returning to, the labour market.

Once again, we were fortunate. Through a friend, we found an angel of a childminder who could take both Sam and his sister, at the normal rates.  For the next few years, Reena became a fifth member of our family.

The next challenge was primary school.  Deafness being a low-incidence disability, there are very few mainstream schools with a hearing impaired unit (HIU), and the one we eventually chose as the most appropriate for Sam was on the far side of London.  The hour-long trek from home would be a pain (and it was), but the school’s HIU had a fantastic reputation and its unusually large size gave Sam a good peer group.  For the next six years, the HIU was our second home, and its teachers and therapists our second family.

By now it was abundantly clear that Sam will never be troubling the Nobel Prize Committee. But, thanks to the commitment and brilliance of our second family, he does have a future.  In 2010, the wonder that is the British education system presented us with just one practicable option for secondary school – a residential deaf school – and in September that year we did our best to hide our heartbreak as we deposited Sam at his new school-cum-home.

And that’s where we are today.  The weekly boarding has remoulded our family life, as well as breaking our hearts.  But both Joanna and I have remained in work over the past 14 years, and Sam seems happy, increasingly self-confident, and … well, a teenager.  Just this weekend, we had to shout at him to turn his music down – don’t you just hate that Gangnam Style?

And, for that as well as much else, we are grateful.

[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.]

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.