Interface - Every Disabled Child Matters

This response is submitted by Interface. Interface is a parent carer led Parent
Forum. We are parent carers of disabled children and young people in
Summary of questions
1. Why is childcare for a disabled child often more expensive and what can be
done to reduce the costs of providing childcare for this group of children?
Childcare is a business for many people. It is more expensive
because people (individuals or businesses) feel they need to be
more skilled or they will require more time to care for our children
and that will have an impact on the number of children that can be
looked after.
There is also a cultural problem in that people have negative
perceptions of disabled children and many think they should only be
looked after in specialist and not in mainstream provisions. People
often do not see the child and do not see the possibilities, only the
difficulties. This becomes greater the more health and behavioural
complexities there are.
Family members can often struggle to accept and work with our
disabled children unlike non disabled peers which also reduces the
wider pool of support. We do not like begging people to take or look
after our disabled children.
2. To what extent does the current system of support with childcare costs help
parents with disabled children to meet the additional costs of childcare?
It works for some families where the level of needs is not too much
to impact caring ratios, but the more complexities that are added in
in terms of behaviour and/or health needs the more impossible it
Many families cannot even find carers for their children using the
direct payments system and some may need 2:1 support. None of
this is factored into the child care planning.
3. If there was to be financial support to meet the additional costs of providing
childcare for disabled children, how could this be most effectively delivered?
What do you think are the pros and cons of offering extra support either
directly to parents or the providers, or via local authorities?
If it goes to providers they might still not provide the care. Local
authorities are not that good at assessing needs especially those
that relate to behaviours as reflected in continual battles for
services for some families. They may have specialist services in
early years to support these assessments but they tend to relate to
nursery and school provisions. The financial support offered had
got to reflect actual needs.
The Children and Families Act is trying to join all of this up better maybe you need to write it into the new regulations relating to EHC
Plans and have it included as part of that funding which families can
choose to take as money or services.
Availability and inclusion
4. What are the barriers to extending access to suitable childcare for disabled
children and what can be done to address them?
Negative societal attitudes – need more positive messages
especially for very learning disabled children like the new Disability
Matters E Learning being developed by RCPCH and others. People
should not be scared of our children.
Too much work for too little money – there needs to be a legal
incentive on someone to commission such services or ensure they
are in place. More specific data is also needed to understand the
needs as broad headings do not work. Such a new national data set
has been developed and will soon be implemented through Chimat.
Each child is unique and individual.
Lack of skills and confidence – most people do not understand our
children and many are not good at listening to parent carers and
assume they know it all when they do not. Parent carers are also
rightly concerned about quality of provision since many of our
children are very vulnerable.
5. Do you agree that families with disabled children and young people
experience fewer early years and childcare options compared to other
families? If so, why is this and what can be done to address this?
Yes – see above.
Are the reasons the same/different for older disabled children
(eg 14 plus)
They get more magnified and difficult and the staffing
ratios for some of our children will grow. Additionally
disabled children may be more vulnerable and not have
friends to come home with or at all and they cannot rely
on wider social networks of support that others can. It
gets harder as they get older because lots of the short
breaks provision reflects what they had as children too in
the holidays – ie. Few days and limited hours.
Are they the same/different for disabled children from BME
The same in all communities as even in non BME
communities academic excellence is valued and those
who struggle or have learning disabilities are seen as
being lesser human beings and having less value.
Are they the same/different for disabled children living in rural
Are they the same/ different for children with complex
health/medical needs?
The issues will be greater – but also for those with
challenging behaviour who will be the most marginalised
of all.
6. What are the different challenges in extending access for disabled children
pre-school childcare providers;
See above.
wraparound school or holiday childcare providers;
Not geared up and lots of planning to try and make things work
which may happen or may not depending on how receptive they
are. They can fill provisions with non disabled children.
providers of childcare for older children; and
See above
others, i.e. children’s centres?
Limited spaces for children with differing and complex needs.
7. What is the role the following bodies or organisations should play in
improving the availability of childcare for disabled children and what is
needed to enable them to fulfil this role?
National and devolved government
Legal mandates to act and to listen to families direct.
Local authorities and their health partners
Legal mandates to act and to listen to families direct.
Early years providers, including childminders
Legal mandates to act and to listen to families direct.
Schools (mainstream and special)
It would be good if they could have more provision but they do
not even for non disabled children. Legal mandates to act and
to listen to families direct.
8. What can be done to ensure that inclusive childcare becomes the norm for
disabled children going into the future?
For some children there should be no question of their not
being included its blatant discrimination. Disabled children are
not a homogeneous group. For those with more complex
behavioural, health and learning needs there needs to be
specialist planning and commissioning. We feel quite
disillusioned about the Equality Act as disability is at the
bottom of the pile.
9. What are the reasons childcare offered for disabled children can be lacking
quality and what do you think needs to be done to improve this?
Quality for learning and care needs will require in-depth
understanding of the needs and aids and resources to support those
needs. Most of this is unlikely to be in place as it is also something
families themselves may not have and will have to fight for or get
themselves. For example some families have to pay for therapies
and learning resources and language and communication resources.
The EHC planning process may improve this if it is done well.
10.Are there particular groups of disabled children who are better or less well
served by current childcare provision?
Those with challenging behaviour are unlikely to have any and they
will also not be able to access after school or other clubs and will be
quite isolated. One family commented that even the wider family
would not want to look after her son because of his complex
behavioural and learning needs.
11. To what extent is the childcare workforce equipped to provide high quality
care for disabled children? What role do the following people/ organisations
have in improving the standard of childcare for disabled children?
National and devolved government
Local authorities
Early years providers, including childminders and individual staff
Schools (mainstream and special)
For all of them they lump all of our children together and they are not
the same. They are unique individuals with their own needs. Not
many people apart from parents seems to be able to tell the
difference between learning difficulty and disability; speech and
language disorders and difficulties, These are all very important to
understanding the child. Existing commissioning and lack of any
intelligent data means that no one but families know who our
children actually are. The new data set should make a difference (see
enclosed NNPCF paper and data set).
12.What more do you think needs to be done to improve the information
provision to ensure that families are aware of the provision available in their
Work with and deliver it through local Parent Carer Forums like Interface as
they will be trusted. Families will be put off by bad experiences and if there
is a lack of trust it soon spreads around communities. Equally Forums like
Interface can promote confidence among its members and more broadly.
June 2014
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