APPLICATION FOR STATEMENT OF
SPECIAL EDUCATION NEEDS
PASSING ON MICHELLE’
S EXPERIENCE
Max Appeal thanks Michelle Hiseman for her hard work in pulling together her experiences and advice so that we
can share this with you!
Michelle, a psychologist and 22q parent, is also the author of the careers advice booklet for school leavers.
My name is Michelle and have a child with 22q11.2 deletion. Recently I successfully gained a Statement of
Educational Needs for my child and have put together some general information below, which I hope you will find
useful.
Before you start to apply for a Statement of Educational Needs, familiarise yourself with the procedures both on
the Government website (see below) and your County Council website. I have also included some other useful
websites below which are worth a look. There is a lot to take in, but the more knowledge you have about your
rights and the system the better your application will be.
Many authorities will have a two stage application process plus an annual review (check your local County Council
website for precise details or see if there is a paper copy in your local library).
Useful Websites:
http://www.direct.gov.uk/en/Parents/Schoolslearninganddevelopment/SpecialEducationalNeeds/DG_4000870
(Government)
http://www.ipsea.org.uk/What-you-need-to-know/Common-problems.aspx
(Independent advice organisation for parents of children with special needs)
http://www.adviceguide.org.uk/index/your_family/education/special_educational_needs.htm#complaints_and_appeals
(Citizens Advice Bureau)
http://www.justice.gov.uk/guidance/courts-and-tribunals/tribunals/send/index.htm
(Tribunal system for appeals)
http://www.amphillips.co.uk/ (Independent law firm who specialises in Special Needs law throughout the UK and
can help with appeals)
THE PROCESS
Stage 1
You may be asked to complete a form to apply to be assessed. Complete the form and attach your own
information sheet about 22q11.2 deletion. Below is one you can cut and paste directly into your own document
which should be sufficient at this stage. Always consider throughout the process that you must give the
Authority what they need to know, not just what they have asked for. Only completing the form is not going to
give the depth of information required and is likely to lead to a refusal to proceed further. If you are refused,
appeal immediately. Remember they are trying to find an excuse not to hand out a Statement due to restricted
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Stage 2
Once you have got the go ahead to undertake a formal assessment you will be asked to complete a more
comprehensive form. Once again this will probably not give you enough space and you will need to write your
own separate parent report either instead of or in addition to the form provided by the Authority. I
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which includes many generic paragraphs you can cut and paste or tweak for your own needs. Including the
general science information is important and will strengthen your case. Remember to focus on the education,
development and learning aspects of your child. The in-depth medical information will be provided by your
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Stage 3
The Statement will be reviewed annually. I have found that a letter giving any relevant updated information and
referring the authority back to my original report is usually enough. However, you could supply a full parent
report again giv
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Good Luck!
SUPPORT DOCUMENT FOR THE REQUEST FOR AN ASSESSMENT FOR A
STATEMENT OF EDUCATIONAL NEEDS, FOR [NAME], [SCHOOL].
What is 22q11.2 Deletion (also known as DiGeorge Syndrome, Sphrintzen Syndrome & Velo-Cardial Facial Syndrome or
VCFS) andhowdoesi
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tonac
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on?
(Reference: Max Appeal Handbook for the 22q11.2 Deletion, DiGeorge Syndrome and VCFS and Ma xAppeal Education Survey
2009)
22q11.2 Deletion is a congenital syndrome which can present with up to 180 anomalies. Most common are heart defects,
speech & language issues, hearing problems, physical deformities, a range of problems relating to the kidney/gut/abdominal
areas, neurological issues and a range of medical problems. As with other syndromes, this is a spectrum disorder so each child
is affected to a different degree. Problems with education and schooling are probably the most common areas that parents
experience.
The education skills, problems and behavioural patterns found in many children with 22q11.2 deletion are different to those
seen in children with other learning problems. The areas which they find difficult and the way these difficulties can be
addressed are often different to the approaches commonly applied by schools and are specific to these children. Parental
support is essential, along with tutoring and extra help to make the most of their educational experiences.
Abstract reasoning can be difficult. They often think literally, often imitating others around them without understanding what
or why they are doing it. They need lots of clear explanations about the world around them and what is expected of them.
They may need several repetitions and may not remember or follow the reasoning. E
x
pl
a
na
t
i
onsa
boutot
he
rpe
opl
e
’
sf
e
el
i
ng
and reasons for particular behaviour can be helpful to their learning about aspects that other children learn spontaneously.
The areas where 22q children most commonly struggle are:
 English and comprehension/speech and expressive language skills
 Memory
 Auditory processing
 Fine/gross motor skills
 Higher cognitive processes such as abstract reasoning and problem solving
 Difficulty with imaginative play
As the children progress through the education system further difficulties occur such as:
 Difficulties with large group presentations and note taking
 Not able to recall information without learned cues –they need to be taught memory techniques, constant repetition
and frequent reinforcement.
 Difficulty with time concepts, colour, shapes and size, money and value of coins
 Disorganised thinking
Behavioural/Social skills/thinking and learning:
 Social immaturity
 Tendency for rigid thinking
 Limited pragmatic judgement e.g. judging the degree of happiness or anger in others
 Hyperactivity and impulsivity
 Easily frustrated and distracted
With the correct support from the school and parents these children can receive a full mainstream education, although they
reach their milestones after their peers. 73.5% of those who responded to a recent survey currently have a Statement of
Educational Needs and 76% are in mainstream education.
Cognitive Issues with 22q11.2 Deletion
(Reference: Educating Children with Velo-Cardial Facial Syndrome by Donna Cutler-Landsman, Plural Publishing)
Brain imaging studies have consistently shown that children with VCFS [22q11.2 Deletion] have smaller overall brains [up to
10% smaller] consisting of less gray and white matter (neurons and the bundles of axons connecting them) across the whole
brain, and decreased cerebellar and thalamic volumes. Other changes suggest abnormal wiring, and thus abnormal function, in
the parietal lobe. These children often meet the criteria for ADHD, often exhibiting inattentive behaviour, lack of focus and
difficulty organising their work and belongings.
Difficulties in executive control impact on tasks involving the processing and interpretation of information and the application
of previous learning; working memory; set shifting and planning. Disruptions to other areas of the brain can affect posture and
movement.
Maths is a particular problem throughout schooling (E.g. judgments of distance, quantity and values of numbers) probably due
to impairment of visuo-spatial reasoning, the working memory and parietal brain structure (especially reductions in
connectivity), a sub-region of which is associated with mathematics. Other difficulties are object and face recognition (i.e.
recognising emotions) and estimating time.
PARENT REPORT FOR ASSESSMENT STAGE.
When completing the form refer to your parent report. If you are not completing the form wr
i
t
e“
see attached
parent report”i
neach of the section headings on the form Try and incorporate the headings from the form in your
report, using them as your headings if possible. The aim of your report is to give an overview of the medical issues
and focus on the learning, development and education issues for your child. It is also important to emphasise that
this is a complex learning disability which will last throughout their school life.
Below is an example report including general information about 22q11.2 deletion covering the information
typically asked for by the Authority and the information they need to know but have not asked for. The scientific
and general information given is important and will strengthen your case and can be cut and pasted directly into
your own report or tweaked to your own requirements. Adding specific information about your child will make it
more relevant (I have used a fictional character, Jane, to illustrate this).
EARLY YEARS/GENERAL HEALTH
Write a general statement summarising the medical history so far. There is no need to go into technical detail as
this will confuse the reader and will be covered in the reports given by the medical personnel involved in your
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, Paediatrician, Cardiologist, Speech & Language Therapist, Occupational Therapist . Aim
for a maximum of 400 -500 words, use non-medical language and keep it simple.
An example of a medical summary is given below. Jane is a fictional character who suffers from typical medical
and developmental problems experienced by many children with 22q11.2 Deletion. She is five years old.
Jane was born full-term with a chromosome micro-deletion called 22q11.2 Deletion (also known as DiGeorge
Syndrome and VCFS). 22q11.2 Deletion is a congenital syndrome which can present with up to 180 anomalies.
Most common are heart defects, speech & language issues, hearing problems, physical deformities, a range of
problems relating to the kidney/gut/abdominal areas, neurological issues and a range of medical problems. As
with other syndromes, this is a spectrum disorder so each child is affected to a different degree. Problems with
education and schooling are probably the most common areas that parents experience after the age of five years.
Since birth Jane has seen a wide range of specialists, including Portage, Genetic Unit, Cardiac, Speech & Language
Therapy, Audiology, Eye specialist, Occupational Therapy and Educational Psychologist. In [Date] she was fitted
with a hearing aid in her right ear for some hearing loss. She has to wear glasses and an eye patch. As a baby,
Jane had to undergo two major surgeries to correct severe cardiac problems. She now has regularly check-ups and
will require further surgery when older.
Since birth, Jane had trouble feeding, refluxing all her food, which resulted in early intervention of speech therapy.
When feeding problems were resolved, it then became apparent that there was significant speech delay, later
diagnosed as being caused by a sub-mucous cleft palate. She uses Makaton signing to communicate. She has had
surgery to try and repair the palate. Jane’
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Makaton signs, particularly those who are familiar with her speech sounds. However, most of her consonants are
still difficult to form and she has a long way to go before her speech is understood clearly by everyone. There is a
possibility of further palate surgery within the next two years.
Jane does achieve her milestones about a year after her peers. As with virtually all children with this condition,
she is behind her chronological age developmentally. In my opinion Jane is generally 12 months behind her
chronological age, dependent on task. It is typical for children with this condition never to reach the
developmental standard for their chronological age or current school peer group.
EDUCATION/LEARNING
Brain imaging studies (such as those carried out by Prof. Eliez, Director of Child Psychiatry and Special Education
Service) have consistently shown that children with 22q11.2 deletion have smaller overall brain size, particularly in
the grey and white matter of the parietal lobe. Such brain abnormalities particularly impact on the executive
control, processing and transmitting maths information, working memory, calculation, planning, application of
previous learning, recognising emotions, estimating time, lack of focus and difficulty organising work and
belongings. The areas which they find difficult and the way these difficulties can be addressed are often different
to the approaches commonly applied by schools and are specific to these children. Parental support is essential,
along with tutoring and extra help to make the most of their educational experiences.
Abstract reasoning can be difficult. They often think literally, often imitating others around them without
understanding what or why they are doing it. They need lots of clear explanations about the world around them
and what is expected of them. They may need several repetitions and may not remember or follow the reasoning.
E
x
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na
t
i
onsa
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he
rpe
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about aspects that other children learn spontaneously.
The areas where these children most commonly struggle are:
English and comprehension/speech and expressive language skills
Memory
Auditory processing
Fine/gross motor skills
Higher cognitive processes such as abstract reasoning and problem solving
Difficulty with imaginative play
As the children progress through the education system further difficulties occur such as:
Difficulties with large group presentations and note taking
Not able to recall information without learned cues –they need to be taught memory techniques, constant
repetition and frequent reinforcement.
Difficulty with time concepts, colour, shapes and size, money and value of coins
Disorganised thinking
Behavioural/Social skills/thinking and learning difficulties:
Social immaturity
Tendency for rigid thinking
Limited pragmatic judgement e.g. judging the degree of happiness or anger in others
Hyperactivity and impulsivity
Easily frustrated and distracted
Strengths include:
Rote Memory
Maths Calculations
Spelling and written language
Decoding words and reading basic information
Pleasant personality and willingness to learn
Jane learns best working in small groups or 1:1. Computer-based programmes are good because they present the
information in a logical, linear, non-abstract way and repetition of lessons is consistent without person-to-person
variables. Concepts need to be repeated and drilled. When she is older memory techniques and help with taking
tests will be needed, including extra time and additional notes and possibly taken with a SENCO. Teaching needs
to be by direct instruction rather than discovery learning with materials being presented both visually and verbally
With the correct support from the school and parents these children can receive a full mainstream education,
although they reach their milestones long after their peers. 73.5% of those who responded to a recent survey
carried out by MaxAppeal currently have a Statement of Educational Needs and 76% are in mainstream education.
EMOTIONAL AND MENTAL HEALTH
Donna Cutler-Landsman, an expert in the education of children with 22q.11.2 deletion, points out that nearly all
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which impact on their functioning and learning. Children and teenagers often have mental health problems
relating to anxiety and self-esteem which are impacted by their education experience. They can be easily
depressed and upset when laughed at or by what people say. As teenagers they have high incidents of
schizophrenia. Jane needs to be handled sensitively and positively as she already shows signs of anxiety in new
situations, too much noise, too many people and if spoken too sharply or excluded by other children.
COMMUNICATION SKILLS
22q11.2 deletion affects communication not only through physical disabilities relating to speech and hearing
problems, but also to processing and interpreting facial expressions and voice tones. Jane already struggles to
understand when her games or actions have gone too far or the other child has had enough. She does not seem
to understand how her behaviour impacts on others and has to have social rules and skills clearly explained over
and over again. When they are older, children with 22q11.2 struggle to verbally express their feelings and needs,
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ore
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.
Jane is currently a confident communicator using a mixture of Makaton Signing and verbal sounds, with some
recognisable speech sounds. She generally manages to get her message across and has been surrounded by
carers, teachers and friends who have at least a basic knowledge of Makaton. This has maintained successful
communication with others although she is now beginning to realise that her speech is not fully understood and is
starting to get frustrated. It is important that this does not discourage her and staff would need to have Makaton
training to maintain good communication until her speech issues have been resolved.
COGNITIVE ISSUES
Brain imaging studies have consistently shown that children with VCFS [22q11.2 Deletion] have smaller overall
brains [up to 10% smaller] consisting of less gray and white matter (neurons and the bundles of axons connecting
them) across the whole brain, and decreased cerebellar and thalamic volumes. Other changes suggest abnormal
wiring, and thus abnormal function, in the parietal lobe. These children often meet the criteria for ADHD, often
exhibiting inattentive behaviour, lack of focus and difficulty organising their work and belongings.
Difficulties in executive control impact on tasks involving the processing and interpretation of information and the
application of previous learning; working memory; set shifting and planning. Disruptions to other areas of the
brain can affect posture and movement.
Maths is a particular problem throughout schooling (E.g. judgments of distance, quantity and values of numbers)
probably due to impairment of visuo-spatial reasoning, the working memory and parietal brain structure
(especially reductions in connectivity), a sub-region of which is associated with mathematics. Other difficulties are
object and face recognition (i.e. recognising emotions) and estimating time. Problem solving and team sports are
also challenging.
PLAYING AND LEARNING AT HOME
Short summary statement of how your child engages in learning and play activities in the home, for example:
Jane undertakes a variety of activities at home including pretend play, mimicking everyday activities, such as
cooking. Imaginative play is a difficulty with these children. Jane has recently started to pretend to be a favourite
character from TV or film but does struggle to follow and undertake imaginative play when it is set in a
fantasy/fairytale c
ont
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.She loves physical play such as the trampoline, riding a
bicycle as well as water and sand play. She is starting to understand basic board games and turn taking, but easily
loses interest if they take too long.
RELATIONSHIPS
For example:
Jane enjoys the company of other children but prefers 1:1 rather that group play. She struggles to understand
constantly changing rules and pace of play when with others, particularly when there are two or more other
children. She prefers the company of children younger than herself, who are comparable to her development age.
Children of her chr
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an equal peer.
SELF HELP/PHYSICAL SKILL
For example:
Jane can get dressed independently, when motivated, and when no zips, buttons or other fasteners are needed.
She tries to be independent when washing, cleaning teeth and getting snacks and drinks. Spills and mishaps are a
daily occurrence as she has a clumsy way of doing tasks and is accident prone. However, she persists and is
improving her competence all the time and responds well to her effort being praised which encourages her to
keep trying.
BEHAVIOUR AT HOME/ACTIVITIES OUTSIDE THE HOME
For example:
Jane has more challenging behaviour than other children of her age, exhibiting reactions more in line with younger
children. She has to be handled calmly, firmly and consistently, with rules and social expectations being repeated
over and over again. She is now responding to basic discipline and sometimes acts on basic rules without
prompting, for example, putting rubbish in the bin. She has to be closely watched when out and about as she
wanders off easily. She is beginning to stay nearer her carer more and has started to stop at the kerb to look for
cars when crossing the road. However, overall she has no sense of danger and can be easily led by other children.
A parent or nominated carer has to be present when she is at a social gathering such as a birthday party because
she needs extra supervision.
SUMMARY
Use this as an opportunity to ask f
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,
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asking). For example:
Jane is typical of most children with 22q11.2 deletion and will always struggle at school. Her learning disabilities
are complex and will last throughout her school life. Jane was born in August so is one of the youngest in the year.
She would benefit from being put back a year and maintaining this throughout her school life as she will always be
behind her current class peers and the gap will widen at junior and senior level. She will need an individual
learning plan and she will benefit from a full-time Learning Assistant (LA) who knows Makaton, particularly in her
primary education. The LA would help her get organised, remained focussed, help her with her work and reach
her milestones. As noise and busy environments can be stressful, quiet lessons away from the class would be
beneficial but it is important she is still made to feel a member of the class by joining in circle time, PE etc with
them. During circle time she needs to be seated at the front facing the teacher to lessen distractions. She is very
good at copying the crowd and seeming to understand what is going on so teachers will need to reiterate general
group instructions directly to Jane and ensure she has understood. With proper support at school Jane should
achieve her potential and maintain a mainstream education.
Lansdowne House, 13 Meriden Avenue, Wollaston, Stourbridge, West Midlands, DY8 4QN
Helpline: 0800 389 1049 Tel/Fax: 01384 821227 e-mail: [email protected] web: www.maxappeal.org.uk
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