Memorandum submitted by Contact a Family
(CP 23)
WHAT IS
CONTACT A
FAMILY?
Contact a Family is a UK-wide charity which
aims to enable parents and families with disabled children to
have access to good quality advice and information, broad ranging
appropriate support and contact with other families.
We have a freephone helpline providing advice
and support to families across the UK. We have offices in Scotland,
Wales and Northern Ireland as well as regional offices in three
English regions. We also have six community projects in Lewisham,
Lambeth, Wandsworth, Southwark, Ealing and Southall which provide
hands on support and help to families with disabled children in
these boroughs.
ANTI POVERTY
WORK AT
CONTACT A
FAMILY
A vital component of our work is to encourage
families to claim the benefits that they are due. We are committed
to an anti-poverty agenda because of our commitment to implementing
a practical equality strategy which includes low income families.
The Committee asks whether specific groups of
children are particularly affected. Families with disabled children
are certainly more likely to be poor.
These families have higher expenses and lower
incomes (Dobson and Middleton "Paying to Care" 1998;
DSS "Households Below Average Incomes" July 2001). This
is especially true of minority ethnic families who are less likely
to claim benefits and when they do, are refused more often and
get given lower rates, routinely, than white families (Chamba
"On the Edge" 1999).
Over half of households with disabled children
lack some of life's basic necessities because they can't afford
them, (Gordon et al 2000 Disabled Children in Britain) and three
quarters of families with a disabled child live in an unsuitable
home (Oldman & Beresford 1998 "Homes Unfit for Children").
We want to make sure that our families get what
they are entitled to. Welfare benefits advice work makes you less
poor, but also has health benefits. It also improves physical
functioning, self reported general health, vitality, social functioning
and emotional functioning and improves mental health. This has
been verified in a number of studies, such as Abbotts & Hobby
"Welfare Benefits Advice in Primary Care" 2000. Thus
making parents less poor means they are more able to work on their
relationships and more likely to have the energy to do other things,
like attend a support group or challenge the level of services
that they receive.
The Contact a Family helpline has taken positive
steps to address poverty and benefit take up, with particular
emphasis on marginalised groups.
Reaching out to more families through the helpline
For 2001-02, enquiries to Contact a Family overall
were up 62%. In 2002-03, these figures were up by a further 31%.
Contact a Family now reaches over 18,000 families a year. In addition
our website, www.cafamily.org.uk receives over a million visits
in a year, making it the 16th most visited charity website.
Of our enquiries, over 1,650 concern financial
matters, including benefit advice. This was an area of work which
we only started to address in any depth in June 2001 when the
freephone helpline was launched. In the year to April 2002, enquiries
on financial matters increased by 207%. They increased a further
13% this year.
Low income families have been targeted via a
Disability Living Allowance take up campaign—this generated
the highest enquiries number of enquiries in a single month. In
November 2001 at the height of the campaign, the helpline dealt
with 1,600 enquiries, more than double the usual monthly average.
Coverage of the campaign was excellent, including
on minority ethnic radio stations and through tabloid and local
press.
A regular rolling programme of press releases
is undertaken each year, promoting our advice services with regard
to a number of different issues.
SPECIFIC ASPECTS
OF CHILD
POVERTY AFFECTING
DISABLED CHILDREN
(a) Childcare
Government policy recognises that the route
out of poverty is work. If you are a parent, being able to work
is dependent on being able to arrange and pay for appropriate
childcare. Childcare is a special problem for families with disabled
children. A number of studies have given compelling evidence of
the extent of difficulties with childcare for families with disabled
children. These difficulties are of two different sorts—being
able to pay for child care and access to childcare.
Firstly, there are issues in terms of paying
for childcare. The new Child and Working Tax Credits allow a flat
rate for child care of £135 for one child, of which 70% can
be covered. For the first time, the costs of using a home care
agency can be covered. However, an agency supplying a worker with
experience of disability issues would charge at least £8
per hour. So for a basic 35 hour working week, even with no travelling
time, costs of at least £280 would be incurred. The maximum
a parent could claim would be 70% of £135 ie £94.50.
The allowance within Tax Credits for childcare
should be substantially increased in the case of a disabled child.
However, the problem of insufficient supply
still remains. A recent survey in Southwark (Early Education and
Childcare for Children aged 0—14 with Disabilities and Special
Needs, 2000) for which Contact a Family Southwark helped to find
parents showed that there is insufficient after school and holiday
provision for disabled children—only 9% of statemented children
and 1.4% of children with special needs receive out of school
provision. Holiday schemes provide for 7.4% of children with statements
and 30% of severely disabled children. Childcare during the holidays
is the highest priority for working and non-working families.
Seventy-one per cent of all parents used some form of childcare,
but only 54.8% of parents of children with special needs.
There are very few specialist nurseries, childminders
with accessible premises and appropriate training and expertise
to look after children with complex needs and services can be
inflexible. (JRF 1998 "Combining Work and Care")
By offering incentives to train as a childminder
to disadvantaged communities, it would increase employment, reduce
dependence on welfare and offer greater choice for families seeking
childcare. Specific recruitment drives in black communities are
essential—black and Asian parents are far less likely to
be able to access child care. (Daycare Trust 2000 "Ensuring
Equality")
The Government, through the National Childcare
Strategy needs to substantially increase the level of resources
to enable new and additional childcare places for disabled children.
Contact a Family arranged a web based survey
about childcare for three weeks from Friday 11 October to Friday
1 November 2002. In total 1,870 parents visiting the Contact a
Family website completed the short pop up questionnaire. The results
are outlined below. Six questions were asked.
Q1 It is more difficult to find appropriate
childcare for a disabled child than a child who is not disabled
Q2 It is more expensive to arrange appropriate
childcare for a disabled child than a child who is not disabled?
Q3 There is not enough choice in childcare
options if your child is disabled
Q4 I have found it difficult to combine working
with looking after my child because of childcare problems
Q5 I have had to cut back on my work or give
up work because of childcare problems
Q6 The Government should do more to encourage
a greater variety of childcare for disabled children
Perhaps most worrying is the figure of over
1,000 people who had had to give up or reduce working hours because
of a lack of childcare. This sits uneasily with government policy
to encourage work as the main route out of poverty.
In addition to the website survey, qualitative
information was sought from parents and professional workers by
means of asking them to e-mail detailed comments on their own
experiences. Some of their different experiences are directly
quoted below.
Childcare worker
"Once I started to site for one family
with children with disabilities, I found that my name and number
spread like wild fire, since I was one of the only people willing
to care for those precious children."
Mother
"I am really struggling with this issue
now. I need to work to help to support my family but my son needs
me to be at home. I want to finish my degree as well but guilt
is taking over."
Mother
"The biggest issue is an appropriate setting
for a child with severe learning difficulties. Trained staff is
the key. Also the attitudes of other parents to a child with autism."
Mother
"My daughter's condition is unpredictable,
often resulting in hospitalisations for dehydration, pneumonia
and other crises. I had to leave work after realising the futility
of trying to write a report while sitting at my daughter's hospital
bedside at two in the morning. Finding appropriate care is almost
impossible, even though she is a pleasant easy going child. Her
medical needs are just too complex and many people have been unwilling
to watch her due to fear of what might happen, as illness comes
on suddenly and seriously."
Father
"We have a 17 year old with a rare disorder.
She is physically too old for childcare yet mentally not old enough
to be by herself in the summer holidays, or go to activities for
adults. This is a large challenge and pretty frustrating. Even
when she is at school, we have to fit work and meetings around
bus pick up and delivery times."
Mother
"I work days and my husband works nights.
We don't enjoy doing this but it is the only way we can afford
the things we need as we were turned down for benefits. It's very
hard to balance work and three children, especially when one has
bladder exstrophy."
Mother
"I want to return to work—I was very
successful at my job and earning a very good salary—but
simply cannot find childcare for my son with ADHD. Thirteen childminders
to date will not look after him. Come on Mr Blair and wake up
to the needs of real people."
It is also about working with social services
departments to ensure that they arrange care which fits around
employment patterns—for example that physical care for disabled
children is available at the weekend, if the parent works at weekends.
This will also involve encouraging the use of direct payments
for such needs, so that social services give cash instead of services,
if this allows greater flexibility.
(b) Expansion of family friendly employment
practices
Contact a Family believes strongly that family
friendly employment practices are in the best interests of both
employer and employee.
In May 2003, Contact a Family carried out a
survey of 710 UK parents visiting our website to find out what
they knew about, and what their opinions were of, these new rights.
The results are as follows.
We asked:
Are you
working full time for a medium to large employer—32%
working full time for a small to medium employer—14%
working part time for a medium to large employer—16%
working part time for a small to medium employer—12%
not working at the moment—26%
How aware do you think you are about your new
rights to ask to work flexibly?
Does your employer currently have any flexible
working arrangements (eg flexitime, allows staff to work from
home occasionally)?
Does/would flexible working help you to combine
working with looking after your child?
How sympathetic do you think your employer is/would
be to requests for flexible working?
Now that the law has changed, how likely are you
to ask to work more flexibly?
already working flexibly—15%
The results show that there is still some way
to go before parents of disabled children can be said to understand
their new rights—with only 30% describing themselves as
quite or very aware of their new rights.
Parents welcome flexible working. 77% believe
that flexible working does or would help them to combine working
and caring. This is a clear endorsement of the need for these
new regulations. However, 22% thought that their employer would
be quite or very unsympathetic to such requests. For this reason,
we would welcome a strengthening of the regulations to give a
right work flexibly, rather than simply a right to ask.
Mother
"My employer (the health service) thinks
that they are being flexible in allowing me to work 35 hours a
week, rather than 40-50 hours."
We would also welcome an extension to the rights
of fathers to take extended paternity when a child is born with
a disability.
Fathers of disabled children frequently report
that they feel relatively uninformed about their new child as
ongoing information about the development of the baby is only
received via their partner who maintains contact with professionals.
They often perceive themselves as "the peripheral parent"
(Carpenter & Herbert 1994). It is most important that professional-parent
dialogue includes the father.
We would strongly urge that parents should be
allowed to use all their parental leave as one block at the end
of maternity/paternity leave. This would be particularly important
where a child is born with a very limited life expectancy, or
who needs major surgery at birth and is unable to leave hospital
and return home with his/her parents. In these cases, there may
be no way that a child will survive longer than a few weeks and
both parents need to be able to share the available time with
their child without risking their employment, which will be needed
in the weeks and months to come.
For similar reasons, we would also support the
possibility of extending paid paternity leave where the child
is born with a disability. Certainly, the available research suggests
that the birth of a disabled child can leave men distraught and
devastated. (eg Carpenter & Herbert in "Families in Context"
1997, where fathers described themselves as "numb",
"angry" and "in shock").
An article by fathers of disabled children in
the Guardian on 29 May 2002 describes how "I stopped functioning;
I couldn't stop crying; couldn't be in the house near the children;
couldn't see friends . . . After a couple of weeks of barely eating
or sleeping and spending nights crying on the floor of the children's
room, I went back to work . . . Months later I still have to go
out in the car park on a regular basis so people won't suspect
I'm losing the plot".
Any additional support that could be offered
to fathers at this most difficult time would be most warmly welcomed
by fathers and their partners.
Support through welfare benefits
(1) Tax Credits
Contact a Family broadly welcomes the introduction
of the new tax credits.
However, there is some anecdotal evidence that
the new Child Tax Credit has pushed some families just off Income
Support. This means that they cannot get access to loans and interest
free credit through the Social Fund.
Father
"I have lost all the extra I got on the
tax credit through having to take a loan from a loan shark after
I was burgled. The Social Fund said they couldn't help at all".
As outlined in the section on childcare, the
allowance for child care costs within the Tax Credits needs to
be substantially increased in the case of a disabled child.
We welcome the extension of child care costs
to cover formal childcare in the home. However, we would like
to see consideration given to the extension to less formal arrangements
where Social Services certify that this is necessary and appropriate.
We would like to see a greater flexibility in
helping families with disabled children back into work—for
example by having a relaxation of the working hours rule, to allow
parents to start to qualify at lower hours—for example at
10 hours a week. This would help those whose caring responsibilities
are particularly demanding.
We also believe that it is essential that help
with mortgage costs are available to low income earners and not
just those on Income Support.
(2) Hospital Visits
Contact a Family has long asked for financial
assistance for parents with the costs of visiting a sick child
in hospital.
In his report on the Bristol Royal Infirmary,
Professor Kennedy recommended that families are assisted to meet
the costs arising from travelling and being away from home. Unfortunately,
the Government rejected this recommendation.
The difficulty, in essence, is that help with
the costs of travelling to hospital for treatment are met through
a statutory scheme for low income families. However the costs
of travelling to hospital for visiting are not included within
the scheme. The only way of having these costs met is through
the discretionary Social Fund, which is a cash limited fund restricted
to families on Income Support. Low income families who are working
or on benefits other than Income Support (eg the new Tax Credits)
receive no help at all.
Mother
"My son spent many months on and off in
hospital having various operations to correct his deformity. My
husband was self-employed at the time. We received no financial
help in any way shape or form for anything. My husband's business
went down the pan and we were practically penniless. Assistance
with visiting costs would have taken at least a little pressure
off. I never wish to open the cupboard doors and be faced with
emptiness again."
Father
"I live in West Wales where there is no
neurology service for children. My daughter has uncontrollable
epilepsy and we travel to GOSH in London frequently. I would like
to see changes that incorporate assistance with costs for families
travelling outside their Health Authority area, the cost of fuel
is an issue in rural areas as is care for other siblings."
Mother
"My daughter will be in GOSH for two weeks
and we live in Bristol. On benefits only but not Income Support
as my husband is medically retired. We will want to visit as often
as possible. This is going to be very expensive for us but we
will do it."
Mother
"It's a 40 mile round trip each day to
visit my son after his tracheotomy. He'll be in for two months.
Onely one of us is allowed to stay over but we have a new baby
and my husband has to work anyway, so neither of us can stay.
I'd say we spend £20 on petrol every other day. The food
there is really expensive too. Because he works, we don't get
any help."
There is a statutory scheme to help people visit
family members in prison and it seems unfair that this is very
different to the situation of a sick child in hospital whose parents
may receive no assistance at all with the costs of visiting their
child.
There has been clear recognition by government
that children need to have parents with them when they are in
hospital, including overnight. The Department of Health's own
guidance paper "Welfare of Children and Young People in Hospital"
is explicit on this point—stating that family support is
essential and not a luxury.
Contact a Family suggests that the Government
might wish to introduce statutory help for all low-income families
to cover the costs of hospital visiting, which would target help
on those on the lowest incomes and that those parents whose children
are receiving care in a hospital some way from their homes should
receive help towards visiting costs, regardless of their means.
(3) Council Tax
We would urge that consideration be given to
extending the discount provisions in the Council Tax to those
caring for a child under 18. At present, regulations discriminate
against those who care for a younger person. For example, at present,
two parents caring for a child under 18 who has severe learning
difficulties will receive no discount on their Council tax. If
the child is 18 or over, the parents will receive a discount of
between 25-50% on their bill, depending on whether one or both
parents care for over 35 hours a week. This is fundamentally unjust.
(4) Social Fund
A number of measures need to be taken. Grants
need to be extended beyond families on Income Support and Income
Based Job Seekers Allowance to those who are in receipt of benefits
such as the new Child Tax Credits and Working Tax Credits for
low income earners. We believe that new grants should be made
at particular trigger points such as a child starting school.
Consideration should be given to extending winter fuel grants
to parents of disabled children on benefits, particularly those
with disabled children under five who are at home all day. This
kind of targeted support would be of relatively modest cost and
would bring enormous benefits to the poorest families.
(5) Carers Allowance
The rate of this benefit needs to increase to
at least the rate of a state pension. It should be paid to full
time students. Whilst we welcome the extension of this allowance
for eight weeks after the death of the disabled person, the extension
should also apply to those whose child is admitted to permanent
care.
(6) House Adaptations
We would like to see the extension of HEES Plus
grants (available to older people) to enable families of disabled
children to apply for central heating grants.
The means test for Disabled Facilities Grants
is assessed on the parents' ability to borrow money. Many parents
of disabled children cannot afford to borrow money. If they are
employed, they may feel concerned that they may have to reduce
their hours at any moment, or give up work if their child becomes
seriously ill. Some refuse a grant because they cannot afford
to raise their contribution. Children's needs therefore go unmet.
The campaign "Homes Fit for Children" argues that children's
needs should be met without a means test on parents.
(7) Disability Living Allowance (DLA)
We would like to see low rate mobility component
extended to three and four year olds who have difficulties such
as visual impairments. This would mean that they would receive
benefit if they are unable to play outside in a secure area such
as a garden.
(8) Social Services for Disabled Children
Too often parents tell our helpline that there
are limited respite options for children, especially those with
challenging behaviour. Services may not be flexible enough to
fit in with parents' lives (eg evening care to enable them to
attend a school parents evening for a non-disabled child) or work
patterns (eg shift work) or may not meet their cultural needs.
Parents report waits of up to two years to be
assessed by an occupational therapist for equipment. They report
weeks of home visits, reports and letters to get equipment costing
a few pounds.
There needs to be a susbtantial investment in
the provision of services for disabled children and a recruitment
and training drive to ensure that sufficient, quality, trained
staff are available.
In conclusion, there are a number of areas of
policy which still impact negatively on the lives of families
with disabled children, despite welcome moves to improve their
visibilty and status. Contact a Family has a number of detailed
responses on various aspects of policy briefly mentioned here
and would be pleased to discuss any of these further with a view
to looking at how a greater reduction in child poverty amongst
disabled children could be achieved.
Jill Harrison
Director of External Affairs
15 September 2003
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