Mencap response to parliamentary inquiry into childcare for
disabled children
Summary
Mencap welcomes the opportunity to feed into this inquiry. We receive numerous
calls from parents telling us that they couldn’t find or afford suitable childcare for
their disabled children. This can have a major impact on many areas of family life,
affecting both the child’s and their wider family’s wellbeing.
Mencap knows that childcare is vital for the development of children and their ability
to interact with peers, for giving families a break from caring, and for helping
families to undertake work. However, families of children with a learning disability
often find it hard to access good quality childcare support with appropriately trained
staff and that, where this is available, it is often not affordable.
Childcare for children with a learning disability
Children with a learning disability have a wide range of needs; from those with a
milder or more moderate learning disability, to those with profound and multiple
learning disabilities who may need full time care and support with every aspect of
their lives. This means that, for these families, the availability of a wide range of
childcare options, which can meet their child’s health, communication or behaviour
needs is essential.
Childcare also provides disabled children with an opportunity to socialise and mix
with their peers. One parent told us: “My child has little opportunity to mix in groups
outside of family and school. Summer holidays mean that he can enjoy this social
freedom and develop in a way that his non-disabled peers do as a matter of
course...or it should mean that.”
Childcare can also help parents to have a break from caring responsibilities. In
many cases, short breaks are seen as the alternative option in this regard, but
Mencap’s 2013 Breaking Point report1 found that 8 out of 10 families we surveyed
do not get enough short breaks.
Evidence of childcare for disabled children
In 2011, Mencap and KIDS conducted research into childcare during the summer
holidays. 1192 parents responded to our survey, and the results were used to
compile a report.2
Key Findings

1
1 in 10 disabled children were refused a place in childcare provision.
http://www.mencap.org.uk/breakingpoint
2
http://www.mencap.org.uk/sites/default/files/documents/Are%20Cuts%20to%20Local%20Authority%
20Budgets%20Denying%20Families%20The%20Right%20to%20Childcare.pdf

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1 in 3 parents of disabled children received no childcare over the summer
holidays.
1 in 5 families pay more than twice as much for their childcare than the
national average.
2 in 3 families found it difficult or very difficult to find appropriate childcare for
their disabled child
No childcare



1 in 10 parents stated that their child was refused a place in childcare
provision.
27 % of parents received no hours of childcare per week
65% of families received less than 10 hours of childcare a week over the
summer holidays.
Not receiving any childcare at all puts disabled children and their families at risk. It
increases the risk of living in poverty due to limiting the capacity of parents to find
work, prevents children developing social skills through interaction with their peers
and puts carers under the additional stress of providing 24 hour care for their
children during holiday periods.
Caring responsibilities

62 % of parents needed childcare to have a break from caring
responsibilities
70 % of parents who responded to the survey were full-time carers. Meanwhile the
majority of respondents, 80 %, told us that their partners were in full-time
employment. This highlights the caring responsibility that many parents have, which
can have a detrimental impact on their family’s wellbeing. Mencap’s Breaking Point
report showed that 8 out of 10 family carers have reached breaking point as a result
of not getting enough support to care for a family member.
Childcare and work

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41 % of parents said they needed childcare to stay in work.
19 % of parents who responded work full-time. Only 2 % of parents had on
average full-time, 36 – 40 hours of childcare a week.
38 % of parents responding worked part time hours (often not by choice but
in order to meet the needs of their disabled children).
43 % of parents were unemployed and the lack of affordable, appropriate
childcare was a major cause of parents having no employment opportunities.
The majority, 27 % of parents stated that on average they received no hours
of childcare.
There are significantly fewer opportunities for parents to maintain full-time
employment while continuing to care for their disabled child. This is often caused by
the lack of sufficient childcare to meet the full-time hours of working parents
combined with the inflexibility of employers to accommodate the caring
responsibilities of their employees.
“I need childcare to work...lack of suitable care means that currently work is
not an option.”
Lack of options
Feedback from parents was that there was a lack of appropriate childcare for
disabled children. Whether mainstream providers lack the training or understanding
to support disabled children, or specialist childcare prevent children from mixing
with peers or are too expensive, there does not seem to be a good range of
childcare options for disabled children.

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60 % said it was difficult or very difficult to find appropriate childcare for their
disabled child
The majority of parents told us they were not getting the choice of childcare
they would prefer:
o 33 % of parents are relying on family or friends
o 32 % wanted a personal assistant for their child
o 80 % wanted access to specialist
o 28 % wanted more informal childcare
“Your hands are tied and you only have the 1 option put forward by the
specialist play schemes, or so it seems! I don't think there are many other
options if your child is severely disabled.”
Poor staff training

30 % of parents said that providers did not include their children
Whether in early years settings, schools or adult services, the abilities of staff to
meet the needs of children is too often a concern. Childcare provision is no
exception.
“Services lack experienced enough staff to deal with my son and I ended up
being called to help them or having to go to give access to swimming activity
for my son and he only attended on 4 different days during the whole summer
(each day 5 hours but they asked me to pick him up early on 2 of those)”
Lack of flexibility

26 % of parents said that childcare did not fit with the times or days that their
family required it.
What childcare there is available isn’t flexible enough to meet families needs. There
was a common view from parents that childcare is offered for a limited time or
sporadically across the summer holiday. This does not often suit many parents who
work or have other commitments and other children to care for. Some parents also
commented that holiday childcare sometimes overlaps, so that there is lots of
childcare available for 1 or 2 weeks of the holiday, but none for the other 4 or 5
weeks.
“It would be helpful if they could be co-ordinated so the schemes don't all
clash by running on the same day of the week. If they were spaced out
through the week, my daughter could attend more than 1 session a week.”
Extra costs of childcare

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33 % of parents said childcare was too expensive
Almost 1 in 5 parents pay £9 per hour or more for childcare.
Many parents are being asked to pay for additional staff to support their child to
access childcare. This in combination with the additional costs of raising a disabled
child significantly increases the risk of disabled children living in poverty.
“Although there was appropriate childcare during the 4 weeks of August it
was too expensive to use every day.”
Lack of transport options

More than 1 in 10 parents said affordable transport to childcare was an issue
Getting to childcare settings can also prove too expensive for parents. The
disproportionately low incomes that parents of disabled have to spend on childcare,
compounded by the rising cost of childcare is causing families to prioritise essential
commodities.
“Transporting 3 disabled children to possible 3 different activities is
expensive and time consuming [with] no help offered”
Families often also find that transport available doesn’t meet their child’s physical/
behavioural needs, or that siblings childcare being spit between mainstream and
specialist child care makes it impossible to schedule drop offs and pick ups in a way
that meets the whole families needs.
“I don’t drive, I cannot afford taxis to take me to special needs playgroups
and back, and there are no local groups, I cannot use public transport as I
have a newborn and 2 children with ASD who are difficult to handle alone. So
we didn’t see any groups at all this summer”
Lack of information

53 % of parents said it was difficult or very difficult to access suitable
information
Many parents report difficulty in access suitable information about available
childcare. Without information about childcare options being made freely available,
parents struggled to find appropriate care for their children.
“It always involves a lot of phoning around, and you feel like you have to beg
for someone's help.”
Case studies
Becky’s story (name is anonymised)
“The cuts have meant my able bodied children having to take on a caring role with
their disabled sister, as my direct payment budget does not cover cost of respite
holiday clubs. It goes without saying that my daughter misses out on social and fun
opportunities.”
“It is extremely difficult as we both work full time and have two children with
disabilities. This has meant my husband taking most of his annual leave to look
after our children or asking my elderly parents to look after them - they are 83 and
77 years and find it a real struggle but appreciate that we both need to work in order
to survive!”
“This summer was a very lonely time for my daughter...she felt excluded and
literally not wanted by any youth service...despite legislation and supposedly
inclusive services. I seriously felt that my daughter was let down this summer and
some services actually just promote inclusiveness to gain grants and funding but
put every barrier in the way if you attempt to access their services...parents and
carers have to jump through enough hurdles without having to keep hitting brick
walls all the time.”
“I feel there is a real lack of appreciation about the demands of caring for a child
with a severe learning disability. Our lives are often finely balanced and when
services are withdrawn/reduced the knock on effect on personal, emotional, social
and work lives is very stressful”
“I have had the worst summer possible, my son was very difficult to manage and I
needed a couple of hours a day out of the house without him, to recharge my
batteries. Family relations have been strained, and pushed to breaking point.”
“Yes its making it much more stressful and feel we are seen as easy target. It’s
hard for us to rise up and campaign against cuts because we are so busy and tired.
Less time for other children who badly need it and less money for our family when
living costs are rising”
“I dread school holidays - no help - no one listens - no one cares -on my own totally isolated - awful life”
Bromley Mencap Childminding Networks (further case studies relating to this
service are attached alongside this submission)
Bromley Mencap’s childminding Network was set up in 1995 to provide quality
childminding for parents of children with learning disabilities. The aim was to offer a
flexible, tailor-made service where children up to 16 years of age are carefully
matched with registered childminders who are trained specifically to care for them.
Parents and childminders agree the terms of the arrangement which is monitored
and supported by the Network Coordinators.
Following the success of its original Childminding Network; in the year 2000
Bromley Mencap set up Network Plus to provide respite care in the form of
childminding on a one-to-one basis for children who have a learning disability plus
an additional need such as: physical disability, health care need or a complex
communication difficulty. Parents would be offered up to 4 hours respite care a
week. The scheme will be subsidised to ensure that childminders can offer one-toone care.
The Ofsted registered childminders look after children in their own homes. They are
recruited onto the Networks, assessed, trained and supported by the Network
Coordinators who are employed by Bromley Mencap. It aims to provide a first class
service, with childminders who are committed to the Networks and who have the
special skills required to look after children with disabilities. Childminders wishing to
join the Networks must attend a preparation/disability awareness course which runs
over several weeks and has been developed with help from individual experts and
local agencies specialising in disability. Additional training is offered at regular
intervals to build on the childminders skills and knowledge. This includes any
specific one-to-one training that may be required to meet the needs of an individual
child.
Bromley Mencap joined together with Bromley Scope in 2010, enabling the
childminding service to be offered to families who have children with learning and/or
physical disabilities.
In 2012, the service was assessed by The Professional Association for Childcare
and Early Years (PACEY) national quality assurance ‘Children Come First’ scheme.
To maintain its quality assurance, the service is re-assessed every 3 years.
The roles of the Network Coordinators are to ensure a suitable “match” between the
childminder and the child with special needs. They organise any further training,
carefully monitor the arrangements, set up support groups, and are there to give
information and advice to childminders and parents, both in the initial stages and
throughout the match.
As part of the Network, an afternoon activity is provided during the school holidays
which can consist of games and music/dancing and or craft activities. Childminders
and parents/carers are invited to attend with all their children. An annual Christmas
party is also held and is attended by about 100 children (including siblings and
childminders own children) with childminders, parents/carers where they can enjoy
fun and games with Mick the clown (including ‘pass the parcel’), face painting and
afternoon tea. All the children receive a gift from Father Christmas.