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.


Thank you – for responding to our campaign!

Thanks to all of you who have filled in our survey this week during our guest campaign slot at Mumsnet.  Please do pass it on any parents of disabled children who work, or wish to work http://www.surveygizmo.com/s3/1436317/Working-On-Campaign-Survey.

And watch this space for results of our survey soon.

Working On is “Campaign of the week” on Mumsnet

We’re delighted to be Mumsnet’s “Guest Campaign” of the week for 18 – 23 November 2013.  We hope this will draw attention to the issues parents with disabled children are facing in finding and staying in work.  We’re running a survey on what  would make the most difference to parents with disabled children who work or wish to work.   Help us by completing our survey about what worked for you, or what you’d change if you could:  http://www.surveygizmo.com/s3/1436317/Working-On-Campaign-Survey

You can also follow us on twitter @workingfamUK or facebook www.facebook.com/WorkingFamiliesUK and retweet Mumsnet  (@mumsnettowers) links to the campaign. 

Many thanks for your help!

A very special holiday scheme – Avril Douglas reports

Below Avril Douglas reports on her visit to Park Walk Play Centre.  Please let us know if you have examples of similar good practice where you are.


In these times of austerity there is much talk about access to affordable childcare. This is an acute problem for all working families, but even more so for parents of disabled children and young people.

In a recent visit to Park Walk Play Centre, I had the privilege of seeing excellent school holiday provision which is both affordable and inclusive. Chelsea and Westminster Hospital NHS Foundation Trust in partnership with the Royal Borough of Kensington and Chelsea operates this scheme, with 17 places reserved for the children of employees of the NHS trust of primary school age.

I met Amber Payne (CWH NHS Trust) and Colin Simmons (Play Services Manager, RBK&C) who explained how the provision and the partnership function. Provision is available to parents of children aged  4.5 – 13.0 from 8 am to 6 pm every school holiday, excepting Christmas, when there is little demand. Parental contribution is £14 a day for high quality needs led provision which currently includes four children who are wheelchair users, a child with ADHD and several who are on the ASD Spectrum. The building is suitably adapted, with ramped access and accessible toilet. In a recent piece of research I undertook for Working Families in summer 2013, we discovered that holiday care is a very demanding challenge for parents of disabled children in terms of inclusivity, cost, proximity of provision and availability on a daily basis for the duration of the holiday. This is why it was so encouraging to witness a positive model of holiday day care.

Parents are inducted into the play centre by Amber who has regular liaison meetings with Colin to ensure that everything is running smoothly. Parents are invited to sample the activities on offer. Recently a group of sixth formers from Westminster School on work experience helped to run a week of summer activities and invited parents to take part if possible.

There is a generous supply of support inclusion play workers available to facilitate the activities including 1:1 support where required. The wide range of activities includes sports (football, team games, rounders, and rugby), dance, arts and crafts, board games, cookery and off site activities such as cinema, theatre, climbing wall amongst others. The site includes two halls in the main building, a refurbished kitchen three activity rooms and a large playground.

Perhaps the most impressive aspect of this partnership between the Health Trust and the local authority is the fact that the trust’s employees can benefit from the vast amount of expertise and specialist provision that a local authority can deliver. For example, this can include access to adventure playgrounds, a multi-sensory room, input by inclusion playworkers and play inclusion managers, children with disabilities team members from Social Services, use of specialist equipment. Specialist advice and training can be provided by St. Quintin’s SEN Centre. There is also access to disabled riding facilities, behavioural advice, and the Kensington and Chelsea Targeted play programme which is linked to the Early Help Programme which allocates up to 150 places with a tiered level of need following an  assessment of individual children through a referral process.

I know of no other scheme which is as inclusive, affordable and varied as this scheme. It represents a model of excellent practice which I believe could provide a future way forward. It makes sense for employers to ensure that parents are secure in the knowledge that all their children are thriving in safe and stimulating holiday day care and play provision. There are economies of scale provided by employers (both public sector and private sector) working in partnership with the local authority which has a much wider level of services and expertise than is available in any ordinary workplace or private nursery/holiday play scheme provision. From the employers perspective it is probably much more economical to buy into existing local authority provision, than to start up individual, uncoordinated projects which will not be capable of offering such inclusivity.

Avril Douglas November 2013


Supporting disabled children in schools: a view from teachers

A Guest Blog from the Association of Teachers and Lecturers on the resources and joined up working we need to support disabled children in schools

The purpose of schools is to educate our children and young people; this aim drives the work of ATL’s members.  While there is much debate in society on matters such as curriculum, assessment, inspections, school structures etc, that much at least is a broadly shared vision.

The school day serves, for many, another purpose in a society where most parents work outside of the home; in the state sector it provides free childcare cover for a large part of the day which is very welcome to parents in a country where childcare costs are amongst the highest in Europe.  However, while this is a result of schools’ operations, it isn’t their raison d’etre – which is education, education, education.

It is around this ‘childcare’ byproduct that difficulties can arise between schools and working families.  While some employers are exploring family-friendly flexible working policies, many are not and most working families will need to combine private childcare arrangements around the school day.

These challenges shared across most working families are compounded for parents of children and young people with disabilities especially when their support may be called upon during the school day itself, their working day.

Of course, asking a parent to come in and take their child home not only affects their ability to work but it can damage their child’s access to education and as such, will not be done lightly by any school.  However, the key issue for most schools is whether they have the capacity to offer the appropriate care, in particular situations, for pupils with disabilities.

This capacity will include staff expertise, whether the school has the medical knowledge within its team deemed necessary to judge the level of need and appropriate interventions when particular situations/emergencies occur.  Most school staff are not contractually obliged to administer medication for example and some may do so on a voluntary basis.  Where staff have agreed to provide this type of support, it’s vital that they have the appropriate training, which is kept up-to-date, and that full agreement is reached with parents about the extent of the care which the school can provide.  The ‘will’ is often there, but the ‘way’ is often less straightforward.

ATL believes that all schools should work together as part of an inclusive education service to meet pupils’ needs in the most appropriate setting with resources that support and value all children and young people in their teaching and progress.  We welcome the call made by Working Families, as part of their campaign, that schools have sufficient resources to prevent unnecessary call-ins to parents of pupils with disabilities.

To support this, there needs to be close working between families and schools, assisted by external health professionals.  Furthermore, the government needs to ensure that resources are available, in schools and locally, to support professional training for school staff and necessary adjustments.  Then the shared goal of schools as suitable and safe learning environments for all pupils can be achieved, allowing school staff, pupils and working parents to do the work that they need to do.

Alison Ryan
Education Policy Adviser
ATL, the education union

Costly, unavailable and affecting parents’ ability to work

Today we launch the findings of our summer holiday childcare survey of parents of disabled children.  Many thanks to all of you who responded.  Our findings are pretty grim – only 10 per cent of parents say that their work is unaffected by the difficulties of finding and paying for appropriate childcare and two parents left work altogether because of care difficulties.  The high cost of childcare is a real issue – more than half of parents responding said they are paying more for childcare than they would for a non-disabled child – with 62 per cent of those paying at least an extra £5 an hour.   Over 80 per cent of parents say that their summer care arrangements are a compromise, and the vast majority are relying on family and friends to fill the gaps.

But why is this the case, and why has so little changed since our last survey in 2009?  Local authorities are under a duty to secure the provision of sufficient childcare for working parents – but clearly many are not securing enough for disabled children.  Parents don’t get recompensed more through tax credits or childcare vouchers for the high cost of childcare – but they are clearly paying well over the odds.  And when good facilities are available, why are they only for a couple of weeks not the full summer holiday period? Parents told us that organizing care is “another full-time job” and that summer holidays can be the worst part of the year when “no physio or therapies are available, so my daughter’s health takes a nose dive, and that makes caring harder”.

These are the issues we’re campaigning to change.  We need to hold local authorities to account for securing appropriate provision so parents of disabled children are not stressed and struggling to find care.  We need to make sure that summer holiday care is inclusive and fun for disabled children, not a compromise.  And, until we’ve cracked this problem, we need employers to be particularly understanding when parents ask for unpaid leave or flexible hours in the summer holidays – this may not be their choice but a choice forced on them by a lack of available, affordable, appropriate childcare.

Read our press release here: Summer holiday childcare for disabled children 2013 final  and the full report here: A SURVEY OF SUMMER HOLIDAY CHILDCARE FOR DISABLED CHILDREN SUMMER 2013 final

And we want to hear from you.  Let us have your comments and views on the report or the blog and cheer us up with some examples of really good practice for summer holiday childcare for disabled children.

Summer Holiday Childcare Survey

We’re running a survey about summer holiday childcare for disabled children.  Can you find appropriate and affordable summer holiday childcare in your area?   A few years ago we ran a similar survey and we’re hoping to see if things have changed. If you’re the parent of a school age disabled child (5-18) please click on http://www.surveygizmo.com/s3/1279583/wnd-summer-2013 to do the survey.  Tell us about the good news and what needs to change.

Please complete the survey by Sunday 18 August 2013 and watch this space for the results!