issue 42
spring 2015
waving not drowning
the newsletter for carers and parents of disabled children who work or wish to work
Off Balance:
parents of
disabled
children and
paid work
Many thanks to all Waving not drowning network members who completed
Working Families’ 2014 survey of parents and carers of disabled children. The
survey allowed us to build up a picture of people who are combining working
and caring, what the barriers are to combining the two and, sadly, how little has
changed since our last survey. Working Families has been busily publicising
your issues and making sure that government is aware of the stumbling blocks
in the way of doing paid work and looking after disabled children. Apart from the
costs, financial and psychological, to parents of not being able to do the paid
work they want to do, unemployment and underemployment is a cost to society
as a whole.
Some 88% of unemployed parents of disabled children expressed a strong desire
to return to work. The survey of over 900 parents also found that two thirds of
parents in work had declined promotion or accepted demotion to balance care and
work responsibilities. Our new findings replicate those of our 2012 report, Finding
Flexibility, and once again illustrates both the extent to which such parents value the
opportunity to work – for both economic and other reasons – and the enormous
challenge they face in combining their demanding caring responsibilities with paid
work. Almost four out of ten parents had given up work more than six years ago,
making their return to the labour market that much more difficult. The unemployment
of so many parents of disabled children and the underemployment of so many more
see workplaces losing out on a whole range of skills and talent. Gaps in work history,
lost or out dated skills and lowered confidence all compound parents’ difficulties.
Of the parents who are currently not in work 79% felt that they had no choice but
to give up work at or very soon after the diagnosis of their child. This common all
or nothing scenario could be avoided by allowing parents the chance to adjust to a
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.” Mother of disabled two year old
And whilst there remains an acute shortage of quality, part-time or otherwise flexible
vacancies, especially at intermediate level, parents of disabled children will struggle
to return or remain in employment. Seventy-seven per cent of out of work parents
agreed that finding a job with the right number of hours was a major barrier to
returning to work whilst 87% stated that finding a job with the right pattern of work
was also a major barrier.
“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.” Mother of disabled ten year old
The great majority of in-work parents described finding suitable and affordable
childcare as ‘difficult’ or ‘impossible’. There is a significant lack of specialist childcare
capable of meeting the sometimes complex needs of disabled children.
Even where it is available it is often significantly more expensive than that for nondisabled children. Almost one in three of in-work parents who pay for childcare are
paying more than £10 an hour – more than twice the national average cost per hour.
“Only one local provider offers suitable childcare for my son, but at £16 per hour
this is far too expensive.” Out of work mother of disabled one year old.
www.workingfamilies.org.uk
Having considered all the parents’ comments and crunched the numbers, Working
Families has come up with following recommendations:
• Establishing a new, 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 Oliver Wyman, the leading international consultancy firm, show that the
introduction of a legal right to adjustment leave for the parents of disabled children
could result in a potential annual net gain to the economy of up to £500million
(assuming that all unemployed parents who expressed a desire to return to work
would have remained in employment if adjustment leave was available and that
those in employment but on reduced hours would all make use of adjustment
leave and remain in employment). Working Families believes that a six week
period of adjustment leave, paid at Living Wage levels should be introduced as a
matter of urgency.
• 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 which is free to use and available from www.workingfamilies.org.uk.
• Appointing a junior minister with specific responsibility for urgently driving up
the national supply of suitable, good quality, and affordable childcare for disabled
children.
About our research
Our research survey was available to complete online, and a paper version was
available on request. The survey was promoted to our Waving not drowning network
of parents of disabled children who work or wish to work, via social media, and
through our partner organisations to their networks. The survey was open to any
parent with one or more disabled children or young people under 25 in their family,
and ran from 1 May to 31 October 2014. The survey questionnaire included openended and multiple-choice questions.
A total of 889 parents completed the survey questionnaire, the great majority
(88%) of them female; this is the same gender breakdown as in our 2012 survey.
Four out of five respondents are living with their spouse/partner, and 11% consider
themselves disabled.
Four out of five (80%) parents are in paid employment. One-third (31%) of these
parents work fewer than 20 hours per week.
The great majority of the parents (87%) have one disabled child and 12% have
two disabled children. The youngest/only disabled child is under school age for
14% of the parents, of primary school age for 38% of the parents, and of
secondary school age for 48% of parents.
Half of the parents are in receipt of Disability Living Allowance (for a child under
16), and 18% are in receipt of Carer’s Allowance. One in four (24%) have a gross
family income of £16-28,000, and very similar proportions have a gross family
income of £28-40,000 (25%) or £40-70,000 (27%).
Off Balance can be downloaded from www.workingfamilies.org.uk
Tax-free childcare
prove a disadvantage for parents with very expensive childcare who pay more than
the Working Tax Credit weekly limit, currently £175 for one child and £300 for more
than one child.
Childcare Accounts
Other Childcare Schemes
The tax-free childcare scheme is due to start in autumn 2015. It will provide help
for working parents with disabled children under 17 (under 12 if not disabled).
Parents will be able to open a dedicated tax-free childcare account, where they can
pay in money which the government will top up. For every £100 the government
will contribute £25; in practice the scheme will work on a three monthly entitlement
basis. If a parent paid in £2,000 over a three month period, the government would
top this up by £500. Recently the government announced that for parents of children
on Disability Living Allowance (DLA), Personal Independence Payment (PIP) or who
are registered blind, the maximum government contribution will be £4,000 per child
per year (to get this much help parents would need to contribute £16,000
themselves). For non-disabled children the maximum top-up will be £2,000 per
child per year. It is not yet clear whether parents will be allowed to pay in more than
the amount for the maximum top-up (£16,000/£8,000) if they wish for convenience,
but, even if they are allowed to, of course, this won’t be topped up.
Once tax-free childcare starts, parents won’t be able to join childcare voucher
schemes. Parents who are already in a scheme can continue to benefit from the
tax and National Insurance reductions on childcare vouchers, or they can choose
to leave the scheme in order to take advantage of tax-free childcare. Parents in
existing employer-contracted childcare schemes can also continue to benefit from
these, or choose to leave them in order to open a tax-free childcare account.
Parents who choose to continue in either type of employer-supported childcare can
do so for as long as their employer continues to offer the scheme. For parents
whose employer provides a workplace nursery (for example, many NHS Trusts),
there will be no effect. They will be able to use both tax-free childcare and the
workplace nursery if they meet the conditions and their child(ren) needs to access
qualifying childcare as well as time spent in the workplace nursery.
Qualifying childcare costs
Eligibility for tax-free childcare will usually require that parents work (employed or
self-employed), and earn at least £52 a week. It will be possible to open an account
if one parent works and their partner is on certain benefits, for example, DLA, PIP,
Employment and Support Allowance, Carer’s Allowance or National Insurance
credits for limited capability for work.
Unsurprisingly, money in a tax-free childcare account can only be used to pay for
qualifying childcare. This means registered or approved childcare which is mainly
being used to enable the parent, and where applicable their partner, to do paid work.
Advice
Parents won’t be able to use tax-free childcare if they are in any other scheme of
publicly-funded help. For example, if a parent (or their partner) gets tax credits,
Universal Credit, is in a childcare voucher scheme, or gets student support with
childcare costs, it won’t be possible to open a tax-free childcare account. This may
The Waving not drowning newsletter and e-bulletin will bring you further details of
the scheme as they become clear. If you need advice about tax-free childcare you
can ring the Waving not drowning helpline, 020 7017 0072.
working families Policy Conference 2015 Report
In January, over 120 delegates gathered in Westminster for a packed
programme at the annual Working Families policy event. Sarah Jackson, CEO
of Working Families, kicked off proceedings by reminding delegates, with
the general election coming up, of the key calls in the Families and Work
Group manifesto.
Next, Carole Edmonds, CEO of Bright Horizons, sponsors of the Modern Family
Index, outlined some of the key themes from the report. Getting work, family and
childcare right for families, she observed, was a very complex issue. Families
come in many different shapes, and each need to put in place arrangements unique
to them.
Julie McCarthy of Working Families then set the scene, and introduced delegates
to the new findings from Off Balance, see above. Jonathan Swan then highlighted
some of the main findings of the 2015 Modern Families Index, a survey of working
parents with dependent children: both parents working full-time is increasingly
common; younger men are finding work and family balance elusive; and childcare
worries can act as a brake on career.
The audience then heard from three MPs: Maria Miller (Con), Jo Swinson (Lib Dem),
and Alison McGovern (Lab). Maria Miller highlighted the good track record of this
government in bringing in Shared Parental Leave, but said that there is more to be
done. Flexible by default, for example, was something she said all employers should
consider. Jo Swinson also pointed to ShPL (Shared Parental Leave) as a positive
step forward, and was hopeful that it might herald a new way of doing things. But
many workplaces still seem to be designed by men for men, and this has to change.
And she called for action on the gender pay gap, including enacting Section 78 of
the Equality Act to ensure transparency on pay. Alison McGovern identified five key
areas. Childcare is an issue, problems around availability and costs. Child poverty,
particularly in households where there is a disabled child must be addressed. Male
leaders need to step up their visibility and send positive messages about being a
father. Sure Start needs to be protected. And carers need to be better supported.
A panel, chaired by Sam Smethers of Grandparents Plus, then considered how
Sarah Jackson
Jonathan Swan
Parental Leave
is Extended
The right to Parental Leave, not to be confused with Shared Parental Leave for
couples with new babies, is a right to unpaid time off for parents who have worked
for their employer for a least a year. Eligibility was extended on 5 April 2015.
You can now take 18 weeks altogether for each of your children, disabled or nondisabled, before they are 18. All the other conditions remain the same, and parents
workplace culture could be changed to help fathers become more involved in family
life and take greater account for families who don’t fit the ‘normal’ template. Making
sure all flexible working practices are open to all employees was identified as a
practical solution, along with employers taking better care of how to record fathers
who take things like paternity leave. Better education in schools for boys would help
too, promoting the idea of caring and equal sharing of care in households between
men and women. The panel also discussed issues around zero hours and insecure
work, and the difficulty parents had in configuring childcare around uncertain and
unpredictable working patterns.
A second panel, chaired by Alison Garnham of CPAG (Child Poverty Action Group)
looked at the issue of in-work poverty. The casualisation of the workforce emerged
as a key theme: low paid and insecure jobs were making family life difficult,
complicated further by the complexity of in-work benefits for low paid parents.
Changes to the way that childcare is subsidised, for example, will mean that many
low income families are unable to afford the necessary upfront costs and so will
lose access to childcare. Ideas for a solution included better integration between
the living wage and welfare benefits, and establishing a ‘floor of rights’ that protect
the right to a family life.
Thank you to all of our speakers and panel members and to the delegates for making
the event such a lively and interesting event.
Julie McCarthy
should still check whether their employer has a collective or workplace agreement
about Parental Leave as this may govern notice, and the maximum number of weeks
per child which can be taken each year. If there is no such agreement, notice of at
least 21 days should be given, and the maximum number of weeks a year is four.
Parents can take Parental Leave for disabled children in units of one day. Employers
can require parents taking Parental Leave for non-disabled children to take it in units
of one week.
There are no conditions about the date of birth or expected date of birth of a child
– all that matters is that they are under 18, and the parent has a year’s service with
their employer.
In brief
Childcare
Disabled People and Carers
• The government is planning an online tool/app for finding childcare.
• Several Disability Organisations are working on a project to get disabled
people’s voices heard. They will be looking at Independent Living and
Learning. www.disabilityaction.org/news/item/941/big-lottery-fund-newresearch-funding-to-help-disabled-voices-be-heard/
• Gingerbread’s (the lone parent organisation) report about the cost of
childcare to lone parents notes the difficulty of finding suitable, affordable
childcare for disabled children,
http://gingerbread.org.uk/uploads/media/17/9313.pdf
Parents and Carers in the Workplace
• The earnings threshold for Carer’s Allowance (CA) rose to £110 a week in
April 2015, that’s after tax, National Insurance, some childcare costs and
some pension contributions. You can claim CA if you spend 35 hours a week
caring for someone who gets DLA middle or higher rate care or PIP daily
living component and your earnings are under the threshold. You can find
Contact a Family’s new guide for claiming DLA at www.cafamily.org.uk.
Don’t forget, DLA is not affected when disabled people or their parents move
in or out of work.
• The think-tank, IPPR, has found that flexible working can improve women’s
opportunities to fulfil their potential in the workplace. Last November a man
won a sex discrimination case against his employers when he was refused
part-time work to look after his daughter but women employees of the large
accountancy firm were granted their flexible working requests.
• The Employment Tribunal decision about holiday pay for people who do
regular overtime is more complicated than press reports would have you
believe. If you have a question about your own circumstances, ring Working
Families’ legal helpline, 0300 012 0312.
• Employers for Carers has found that seven out of 10 working carers feel
isolated at work. Their report suggests improved manager awareness of care
issues could improve matters.
• This useful online resource,
https://www.tuc.org.uk/sites/default/files/workingintheuk.pdf
details your basic rights at work and it is available in 13 languages.
• Parents of disabled children and disabled people themselves often find
themselves campaigning for disabled people’s rights. This new publication,
www.equally-ours.org.uk/blog/wp-content/uploads/2014/10/A-practicalguide-to-communicating-human-rights-FINAL.pdf , provides straight forward,
tested examples of talking about Human Rights in a way that gets your
message across.
• You can read Sick of Waiting, a report into patient transport in London, at
www.transportforall.org.uk/news/just-out-report-into-patient-transport-inlondon . It cites long waiting times, missed appointments, wrong information
given to potential users and lack of accountability as well as some examples
of excellent practice.
• The Mental Health Foundation has produced a guide aimed at those with a
responsibility for commissioning mental health and wellbeing services for
young people. You can read it at
http://www.mentalhealth.org.uk/content/assets/PDF/publications/right-hereguide-3.pdf?view=Standard
• The Disability Intergroup of the European Parliament’s website has the
laudable strapline ‘Nothing about us without us’. The group has been reestablished.
• A social enterprise has launched a national access card for disabled
people to help them discreetly tell businesses what ‘reasonable’ adjustments
they need. http://enablemagazine.co.uk/nimbus-launches-national-accesscard-disabled-people/
• The Equality and Human Rights Commission has launched a new online
resource for children and young people – to learn about the United Nations
Convention on the Rights of the Child (CRC), with Plain English factsheets
and video animation. www.equalityhumanrights.com/about-us/our-work/keyprojects/young-peoples-rights-and-crc
• You can read the government’s updated Special Educational Needs and
Disability Code of Practice 0-25 Years at
www.gov.uk/government/uploads/system/uploads/attachment_data/file/3988
15/SEND_Code_of_Practice_January_2015.pdf
• Carers of adults might be interested in this report about social care in
counties. www.lgiu.org.uk/wp-content/uploads/2015/03/The-state-of-carein-counties-Summary.pdf
New opening times
Working Families’ legal helpline’s,
0300 012 0312, hours have changed.
The new opening times are:
Monday 10:00am-1:00pm and 5:00pm-6:00pm
Tuesday 10:00am-1:00pm
Thursday 10:00am-1:00pm
Friday 1:00pm-3:00pm.
www.workingfamilies.org.uk
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drowning helpline
is 020 7017 0072
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children who work or want to work.
The legal helpline number
is 0300 012 0312
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Edited by: Janet Mearns for the Working Families’ Children with
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Printed and designed by: MWA Design
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reviews
Taking Charge A practical guide to living with a disability or health
condition is a new book which has a wealth of useful information, clearly
expressed and indexed. It really is a practical guide. It is comprehensive
with basic and more in-depth topics and much sign-posting to specialist
organisations. Chapters cover nearly every aspect of life including planning
your life, technology, health and social care. Sex and relationships are
included in ‘Your Family’. There is some repetition, probably due to an effort
to provide information where it can be found when wanted, but when I tested
the index by looking up ‘Access to Work’ it was neither under ‘A’ nor ‘W’
despite more than a page being devoted to the help they can provide. (I
found it under ‘Employment’.) The underlying ethos of the book is that
disabled people are running their own lives the way they choose. The tone
is set in chapter 1 which lists the 12 pillars of independent living.
The chapter on ‘Learning and Working’ provides information for parents of
disabled children about education, otherwise the reader is assumed to be
an adult disabled person, but much is relevant to children too. Any reference
work with information about benefits and legislation is going to date quickly
and some of the employment law for carers is already out of date. Anyone
with six months service with their employer can now ask for flexible working
which means no special pleading for carers.
The text carries examples, both generalised and of real people’s experience,
to illustrate how systems work in practice. It is clear that ‘disabled’
encompasses a variety of impairments, mental and physical and all have
rights and needs.
The book is an accessible reference book, not a critique of disabled people’s
place in society. The author is relentlessly upbeat about the availability of
services and assistance which I doubt is the reality experienced by many
and, perhaps appropriately for this type of publication, she doesn’t comment
on gaps in what is on offer or on how what disabled people really want
many services to be is different to what ‘the authorities’ have decided to
offer. This view is mitigated somewhat by the section on rights and discrimination, inevitably at the end, which is pleasingly comprehensive. I don’t
know why pale grey was chosen for the introductory paragraphs in a book
which is intended for disabled people which will inevitably include visually
impaired people, but it is easy on the eye. There is no mention of it being
available in other formats.
This book has a place in every appropriate library or resource centre and
is not so expensive that many individuals can’t purchase their own copy.
You can order Taking Charge from Disability Rights UK
www.disabilityrightsuk.org, 0207 250 8191, £13.99 inc p&p.
My Choices is an entirely different type of publication. Compiled collaboratively by a diverse group of disabled people, styling themselves
‘Self-directed support roadtesters’, it describes the independence they have
achieved by using personal assistants provided by their local authority and
the problems encountered. They say, ‘Although the vision for SDS [selfdirected support] is very positive, the ‘reality gap’ between people’s lives
and that vision can be very great’.
Perhaps the most important point they make is that, although the activities
they wanted to pursue were very different, the support they needed took a
relatively limited number of forms.
You can download My Choices from www.gdaonline.co.uk.
The TUC has produced a publication for disabled trade unionists and those
who support them, Trade unions and disabled members: why the social
model is important. It will be useful for any Waving not drowning members
who are supporting their disabled children into employment but it is worth
a read by everyone. It gives a very clear explanation of the social model of
disability which can be difficult to explain and although their explanation
about the Equalities Act 2010 relates to employment it is helpful and relevant
to other situations. It is a good resource for disabled people and their allies.
It can be downloaded at www.tuc.org.uk.
Janet Mearns
Have your say
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