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Asking for help
from others, can often be one of the hardest things for a parent/carer
of a disabled child to do. You feel that you should be able to cope and
battle with feelings of guilt. It is so important that you try not to
feel this way, at the end of the day asking for help and hopefully
receiving it will help improve yours and your child's life.
Any child with a
disability would have special needs and as such are likely to be
identified as a "child in need" under the 1989 Children Act, which
entitles them to an assessment by Social Services to determine what
support services can be offered.
The first step and
probably the hardest is to contact your local Social Services - this can
be done directly by yourself or by your GP, Child Development Centre or
perhaps your
Paediatrician.
Details of your local social services department should be available
through your local council.
Children with Disabilities Team (CWD)
Most council
authorities will have a special social care team to deal with disabled
children and it is this special team that will get in touch with you.
You will need to explain your situation in detail, so make sure you have
a good idea of what your concerns are and perhaps what basic help you
may need. Sometimes it can be difficult recounting so many issues from
day to day so it can be helpful to keep a daily diary for a while.
Examples of some
concerns:
-
Your child wakes several times
in the night therefore you and your family
get limited sleep as a
result you are all exhausted and
this affects the family
relationship.
-
You feel that you do not have
enough time to play with your child due to
his/her other needs.
-
Your house is no longer
suitable for your disabled child.
-
You are depressed and run down
and cannot cope very well day to day.
Examples of basic
help:
-
The whole family need a break
maybe a weekend without the child.
-
You would like some help with
personal care for your child e.g. washing,
showering, feeding.
-
You need some help and advice
on making it more accessible.
-
You need someone to sit with
your child to give you a night out.
What happens next?
Once you have made
that initial contact a Social Worker from the CWD may first send you a
form to complete and then arrange to visit you and your child/family in
person to assess your situation and determine whether you meet their
department's eligibility criteria for the services they provide. The
initial assessment consists of lots of questions about you, your
disabled child, your family situation, your health and things you do to
care for your disabled child. Therefore it is good to be prepared (use
of the diary). The outcome of the assessment will determine whether you
are eligible for any support and if not, they will give you details of
voluntary local groups that may assist. If you do meet the criteria,
there are several ways you may get help and support. The level and
degree of this support depends on your family circumstances and your
child's needs. It may include one or more of the following:
-
Short Break or Respite - where your child can
stay in a
recognised
respite home or foster carers home (can be known as family
placement) overnight or occasionally for a weekend (some respite
homes will care for children for longer - up to a week)
-
Someone to come to your house
and care for your child whilst you go out for an evening or a day
shopping – sometimes known as special sitters.
-
Someone to come to your house
to help you with the care of your child e.g. dressing, bathing etc.
-
An Occupational Therapist from
Social Services can assess and discuss your child's needs for
equipment and accessibility within your home. You may be entitled to
a Disabled Facilities Grant which can help towards the cost of
providing adaptations and facilities to your home. Please refer to
our benefits section for more help and advice regarding this.
Your local CWD
team will meet the cost of any services they have recommended as and
when you use them, but there is now an option for you to take what is
referred to as direct payments from the local council.
Direct Payments:
Direct Payments
were created by the
Carers and Disabled Children Act 2000
- these are
local council payments for children who have been assessed as needing
help from social services, and whose parents would like to arrange and
pay for their own care and support services instead of receiving them
directly from the local council. Direct Payments are about providing
more choice, independence and control over the services and care.
For example:
-
Pay for services which offer
your child stimulation, new experiences and
independence.
-
You could choose to employ your
own care worker or personal assistant.
-
Buy special equipment.
-
Organise
respite care or a nursery placement.
-
Assistance to attend an
activity e.g. Youth club.
Direct payments
can’t be used to buy services from the council. However you can choose
to have a combination of council-provided social care services and
direct payments to pay for services which you choose yourself.
Your social worker
will discuss the direct payments option with you when you have your care
needs assessed and the direct payments support service can help you to
make sure that the services you buy are suitable, with practical advice
on things like.
-
Taking
up references for care workers;
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Questions
to ask in interviews;
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How to
check for a criminal record;
-
Drawing
up contracts.
The support
service can also help you manage your direct payments and associated
responsibilities. For example you will be required keep records of
everything you pay for and also follow employment regulations.
Direct Payments
are seen to promote the independence of parents and their disabled
children who would like to manage their own social care needs. If a
child is under 16 Direct Payments will usually be made to their parent.
When a child becomes 16 she or he can receive payments in their own
right to allow them to buy in the services they have been assessed as
needing. In the past you could not insist on Direct Payments, however,
in England and Scotland, a request should now be refused only in very
limited circumstances.
The amount you
receive should be enough to allow you to meet all costs, including tax
and National Insurance as well as the fee for a police check, from the
payments equivalent to what you would have been charged had they
arranged the services. Alternatively, Social Services may make the
payments in full and ask you to reimburse them any assessed charge. Any
payments you receive must be used to pay for services to meet the
assessed needs.
What Direct Payments cannot be used for:
Direct Payments
are made so that individuals can arrange and purchase their own
services. However, there are several things they can't be used for:
-
Direct Payments can't be
treated as cash. They can't be used to buy
things like food.
-
Direct Payments can't be used
to employ your spouse or partner, other
close relatives or anyone
who lives in the same
household.
-
Direct Payments can't be used
to purchase permanent residential care.
-
Direct Payments can't be used
to purchase Council run services.
-
Direct Payments are not treated
as additional income when you are
assessed for welfare benefits.
Please discuss
with your CWD Social Worker as other rulings may be in the pipeline
Download:
A parents Guide to Direct Payments (also
available via the
INFORMATION
page)
More about the
Occupational Therapist (OT)
This is where things get a bit confusing because you
will come across OT’s in both social care and health care, here we will
explain about the role of the social services OT:
Your social worker from the CWD will put you in touch
with your local social services OT and they will visit you at home to
assess your needs in much the same way as the CWD social worker did
(bring out the diary again). They will provide a recommendation report
for adaptations required to make your home accessible for your child –
remember that for children under 16 years of age the criteria is to
provide access in/out of the home, to provide a suitable bathroom with
necessary equipment (shower or bath, toilet, wash basin, anti slip
flooring and handrails) and bedroom facilities including adequately
positioned light switches, electrical sockets, window openers and doors
together with appropriate heating. They do not consider any family
living space or access to kitchens. The sorts of equipment they will
provide you with (as a loan) are:
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