Your child’s needs
More children’s needs are met by their local ordinary
school (referred to as mainstream provision) and this may
include help or advice from outside agencies. Placement
in a special school should not be considered as
appropriate, though LEAs are required to consider
‘careful use of available resources’. In some instances,
where more help is required, the LEA will make a
‘statutory assessment’ drawing on advice and
recommendations from all those involved in the child’s
care; parents, medical teams, educational psychologists
and teachers. This assessment may lead to a Statement
of Special Educational Needs, referred to as
‘Statementing’. This statement is a legal document and
outlines in detail what extra provision is to be made in the
school of parents choice.
The 1993 Education Act issued a Code of Practice for
use in all schools outlining procedures and guidance on
identifying and assessing special educational needs.
Health and Social Services are also expected to have
regard to the Code when assisting LEAs and schools.
Copies of this document are available for parents as well
as other relevant papers form the Department for
Education. (See page 35.) The Code will help you
understand SEN issues and how schools and other
agencies are expected to deal with them. It also explains
your rights as parents.
A Statement is intended to support and assist your
child at school, not to limit or deny choice and
opportunity. It should therefore not be seen as a stigma of
any kind. As parents you can expect to be involved in the
process of statementing at all stages as well as
requesting that the
statutory assessment be
initiated. Members of a
medical team or other
agencies may also make
this request on your
behalf, however teachers
will usually begin the
process. Each LEA has a
department which deals
with SEN and a named
officer will be responsible
for each assessment. If the
LEA decide that a
Statement is not necessary
then they are obliged to
submit what is called a
‘Note in Lieu’ of Statement.
You can appeal against
this decision and will be
able to see all the reports
compiled from those
involved.
The timetable laid
down by the Code of Practice from proposing an assess-
ment to making a Statement or a ‘Note in Lieu’ is 26
weeks.
The Code specifies that every school must publish
their policy on SEN and that every school has a specially
appointed teacher to co-ordinate SEN referred to as the
SENCO. The governing body of every school is also
required to have a named governor responsible for SEN. It
will be helpful for you to know who these people are and
how to contact them for help and advice. You should also
be able to gain support and guidance through the
‘Named Officer’ from the LEA.
If you disagree with the Statement or ‘Note in Lieu’ you
should contact the named officer and if you remain
unhappy you have the right to appeal to the Special
Educational Needs Tribunal. This is an independent body
that hears parents’ appeals against LEA decisions and
you have every right to use this facility if you need to. You
will be able to find support, often through voluntary org
anisations or parents groups, in preparing your views for a
tribunal hearing. You are expected to make your appeal
no later than two months following the LEA decision.
If you are satisfied with the Statement drawn up for
your child then all should be well! You will receive a copy
of the Statement so you can be aware from the start
exactly what extra help your child should be getting.
Coping with the school’s environment
Sometimes a young person with JIA will have mobility
problems or difficulties with fine motor skills. This means
that getting around the school building or handwriting
abilities may pose problems. For this reason a Learning
Support Assistant (LSA) may be provided through the
Statement. The LEA will provide the school with the money
to pay for this help and the school will make the
necessary appointment. This person may work with your
child for part of the week or part of every day. The amount
of time deemed necessary will be specified on the
Statement.
Once a Statement is in place it is subject to an
annual review. This review is arranged by the school and
you will be invited to attend. All other agencies and staff
will also be invited and it is a formal opportunity for all
those involved to reassess your child’s progress. A review
can be arranged more regularly than once a year if
needed and the meeting is required if a change in
provision is deemed necessary. An amendment to the
Statement can then be added and submitted to the LEA
for action.
Individual Education Plan
Any pupil having a statement must have an Individual
Education Plan (IEP) drawn up by school staff to cater for
their specific needs. This plan outlines clear long- and
short-term objectives and these are then assessed at the
Annual Review meeting. Specialist careers advice can be
arranged at secondary level schooling and input from a
physiotherapist and occupational therapist will also be
invaluable. After your child reaches his/her 14th birthday
the Annual Review will include a Transition Plan for their
move into Further Education. You and your child will be
active participants in drawing up this plan.
A special school placement, perhaps as a weekly
boarder, may be advisable if physical mobility is greatly
impaired. This will be a decision for you and your child to
make in the final instance and you should never feel
coerced into a special school placement if you disagree
with it. Seek advice before deciding.
Home tuition
It is unusual to find a child with JIA who has other
learning difficulties. In fact they are often bright
academically as a result of their physical limitations and
the extra focus on intellectual pursuits! However, periods
of illness or hospitalisation may mean absences from
school which can easily lead to a decline in progress. Do
maintain contact with your child’s class teacher or the
school’s SENCO to ensure that strategies are in place to
counteract this possible slide. Each hospital will have a
schoolroom or hospital teacher available to assist with
school progress during admission and liaison with the
home school is recommended as good practice. If you
can help arrange for schoolwork during admission this will
make a lot of difference.
If your child is absent from school and ill at home then
s/he is eligible for home tuition if well enough. Your school
or LEA will tell you how to arrange this or do it on your
behalf. Even though these measures exist it is never easy
for any pupil to deal with periods of absence. These
difficulties increase as the student enters secondary
schooling when subjects and teachers seem to multiply. It
is important that the school staff are made aware of the
student’s difficulties. Hospital teachers, physiotherapists
or occupational therapists can help their colleagues
towards this understanding. It is unfair to simply expect a
student to ‘catch up’ or ‘copy up’ notes from other pupils if
they have been in hospital or ill at home for any length of
time. The SENCO should be able to advise how a student
may be best supported.
Your support
Encouraging your child to talk about their anxieties and
concerns regarding school progress will help them ‘own’
and take control of their lives. Encourage him/her to talk to
someone at school and to ask for the support they need.
Sometimes a Learning Support Assistant will be able to
provide this support and to minimise the effects of
absence, but it is also possible that this person may be
over-protective and intrusive in the pupil’s school life.
Learning support does not mean taking control of a child’s
learning, it means defining and agreeing what is needed
and encouraging independence where possible. Negotiating and establishing boundaries for this
assistance is a matter of balance and discussion.
Taking notes in class during lessons or writing essays
requires good fine motor skills — the ability to write quickly.
A student with JIA will often have serious difficulty here.
An understanding teacher will be able to provide
photocopies of teaching notes if approached and to
provide the student with written details of assignments
and essay work. The use of appropriate IT (Information
Technology) equipment can also provide for greater
independence and writing speed. Lap-top computers are
portable and can be linked up to computer equipment
and compatible printer outlets. The provision of suitable
computer equipment can be arranged through the
student’s Statement and updated as required. It is
advisable to seek a specialist assessment of each
individual’s IT needs — LEAs, occupational therapists or
SENCO’s should be able to provide details of what is
available in your area. The help of an occupational
therapist and physiotherapist are invaluable in assessing
the physical learning environment for students. They can
judge accessibility of buildings, the toilet facilities, the
height of desks and chairs and what adaptations might be
required. They will also assist in the provision and choice
of computer equipment as well as assessing hand-writing
capabilities. Do ensure that their perspective is included
in the assessment procedure.
Understanding JIA
JIA is a fluctuating condition. At times your child’s
physical functioning will be better than at others. Their
condition can improve or deteriorate. It is therefore
essential that you look at the worst scenario when making
choices for their schooling. It is also crucial that LEA staff
and teachers are aware of this too. The inclusion of a
comprehensive medical report will help this understanding
but your own comments and perspective of your child’s
condition will be invaluable. Perhaps your child might
have very stiff joints in the morning time; rather than have
to have a whole day’s absence, arrange that on these
days your child will arrive late for school. Helping school
staff to understand a child’s needs will help that child.
The implications of having an illness that may mean
absences from school; that may mean the provision of
specialist equipment or support can make a child feel
isolated or different from their peer group. Children with
JCA are often physically smaller than their classmates and
often much slower in terms of physical mobility. Lessening
this sense of difference can be achieved through
understanding. Perhaps the physiotherapist or
occupational therapists could talk to class groups or
support your child in doing this for themselves. It is only
ignorance and lack of understanding that leads to
prejudice, and prejudice should always be challenged.
Being absent from school can lead to social as well as
academic isolation. Encouraging class teachers and form
tutors to maintain peer contact with the absent student
can lessen this loss. It is difficult enough for all of us to
maintain relationships and friendships at a distance.
Establishing strategies within class groups to lessen this
strain on the absent pupil will help maintain a sense of
belonging. Receiving tapes, letters and cards full of
school goings-on and gossip will help the pupil feel
included and valued, as well as receiving current details
of projects and schoolwork.
Again, encouraging your child to talk about school life
will minimise worry rather than to deny the existence of it.
How any child perceives themselves as a learner is a
strong determining force in their success as a learner.
Motivation and drive are as crucial to success as
academic ability. Nurturing and monitoring your child’s
motivation is essential and ongoing dialogue with school
staff will help promote this. Access to counselling support
may also assist your child explore his/her potential.
Knowing where to go for support and advice as a
parent will make your job easier. (See "Further
Information" for useful
addresses and contacts.) Remember that those who ‘fail’
are only those who stop trying. So, don’t let the ‘system’
get you down !
