Memorandum submitted by the National Deafblind
and Rubella Association
ABOUT SENSE
Sense is a family led national organisation
that supports people with deafblindness and associated disabilities.
It has pioneered early intervention with deafblind children and
their families and supports specialist teachers and support staff
in developing their skills and knowledge.
DEAFBLINDNESS
Deafblindness is a distinct disability that
is more than simply vision loss and hearing loss. The combined
effects of not seeing or hearing clearly are experienced uniquely
by each deafblind person. Whether they are born with dual loss
or acquire it as they start to grow up their lives are profoundly
affected.
THE EDUCATIONAL
CHALLENGE
Children who are born deafblind face enormous
challenges. Vision and hearing are our two most important senses.
At least 85% of all we learn comes from eyes and ears. The "incidental
learning" from birth, that most of us take for granted, is
denied to these children. Finding out about the world around them,
learning to communicate and forming relationships are immensely
more difficult for them. Also, many deafblind children have additional
physical or learning disabilities or medical conditions, which
often means that their deafblindness is not recognised immediately
and support is slow to be provided. Deafblind children require
highly specialist intervention in order to access learning opportunities,
whether this is in a mainstream or a special school. Wherever
deafblind children are educated, the most significant factor in
their progress is the support they receive from qualified and
experienced staff after assessment of their needs.
COMMUNICATION IS
THE KEY
Deafblind children need to receive information
in a way that is accessible to them, so standard teaching methods
will not be effective.
Deafblind children and young people whose first
language is British Sign Language will benefit from being taught
in their first language. They also need a deaf peer group to mix
with, whether this is in a mainstream or special school. The use
of sign language is a valuable part of deaf and deafblind culture.
Similarly, blind and deafblind children should
be offered the opportunity to develop their communication skills
in appropriate ways, such as learning Braille or Moon.
For children with no formal language skills,
a total communication approach is required.
IDENTIFICATION OF
DEAFBLIND CHILDREN
The number of deafblind children, who have additional
disabilities, including complex health needs, is growing. The
aetiology of the children is changing and premature birth and
genetic causes are now two of the key reasons for referral to
Sense Family Services. But, in spite of this growing trend, congenitally
deafblind children are still very rare in the population. Being
born with a condition that is rare and complex presents a challenge,
not just to the child and family, but to schools and services
as well. There are few (if any) specialist professionals at a
local level with sufficient detailed knowledge and experience
to identify needs and then provide the right level of support.
As a result, getting a good or a poor service, not surprisingly,
is a "post code lottery" for families. Many spend hours
searching for the "right" person in the LEA to help
them. They feel they are a nuisance and get worn out and frustrated
trying to get action.
It is largely because of the "gap"
in skilled support locally that children with low incidence needs
do not get a fair deal at present. The whole issue of providing
expert and timely services to meet the specific needs of this
most vulnerable group requires a more imaginative and anticipative
approach.
Children are still under reported. However,
the DES Policy Statement ensured that deafblind children are recognised
as a distinct group. Since its original publication DfES, QCA
and TTA have all included reference to the needs of deafblind
and multi-sensory-impaired children in their documents and Local
Authorities have interpreted this statement to the benefit of
many children. Deafblind children are
"a heterogeneous group who may suffer from
varying degrees of visual and hearing impairment, perhaps combined
with learning difficulties and physical disabilities which can
cause severe communication, development and educational problems.
A precise description is difficult because the degrees of deafness
and blindness, possibly combined with different degrees of other
disabilities, are not uniform, and the educational needs of each
child will have to be decided individually."[1]
This statement also recognises that there is
a continuum of deafblind children, some of whom will choose to
be educated in mainstream schools, some in resource-bases, and
some in full-time provision catering specifically for their dual
sensory impairment. Sense supports this policy.
THE STATEMENT
OF NEEDS
Having a statement is of huge value to deafblind
children and their families. It has helped to transform the lives
of children who, in the past, have had to fight to convince others
of their ability to learn, because usual teaching methods exclude
them. A statement provides entitlement to a thorough assessment,
which looks at every aspect of development. It requires a view
from multi-disciplinary professionals and gives the family a chance
to add their, most valuable, comments. Best practice indicates
the assessment should be undertaken by a qualified and experienced
person(s) who can also offer advice/insights and make suggestions
that relate to practical working with the child, so the value
of the assessment can be spread more widely.
Without this proper legal process, deafblind
children, in some parts of the UK, would not be identified at
all. Their specific needs would not be formally acknowledged.
The children would be described by general terms, like having
"severe learning difficulties"—which offers no
real help to teachers. With the statementing process, families
know exactly what they can expect, how the process should be conducted
and most importantly, that they are protected by the law. Sense
would oppose any change that would reduce families' rights in
this respect.
"Without a clear and cohesive insight into
a child's disability, developmental potential and his or her optimal
learning conditions it is not possible to set up a programme for
deafblind children."—(Parent)
We agree the process needs to be made to work
more effectively. In spite of a very clear framework parents experience
endless local variation in the way the system is administered,
with very mixed results.
SENDA
The Special Educational Needs and Disability
Act 2001 enhanced the rights of pupils with SEN to a mainstream
education. It signalled that where parents want a mainstream education
for their child, everything possible should be done to provide
this. A parent's wish to have their child educated in the mainstream
can only be refused if the child's inclusion would be incompatible
with the efficient education of other children and there are no
reasonable steps which the school and the local education authority
can take to overcome this.
The Special Educational Needs and Disability
Act 2001 also brought schools within the scope of the Disability
Discrimination Act 1995, giving them new duties not to treat disabled
pupils less favourably than others and to make "reasonable
adjustments" to ensure that they were not disadvantaged.
Sense very much welcomed the Special Educational
Needs and Disability Act as a step forward for all children. Sense
was also among the many organisations that called for schools
to be included in the list of public sector bodies that were given
a specific and anticipatory duty to promote disability equality
as a result of the Disability Discrimination Act 2005.
THE LEGISLATION
IN PRACTICE
In 2003, Ofsted reported on good practice in
including pupils with SEN in mainstream primary and secondary
schools.[2]
The report concluded that on balance, the schools examined were
doing well by their pupils. However, the report also stated that
best practice in relation to children with visual or hearing impairment
often involved a weekly visit by a specialist teacher of the visually
or hearing impaired. This suggests that many children with visual
or hearing impairments receive support from a specialist teacher
less frequently than once a week. For children with sensory impairments
qualified teachers of the deaf, blind and deafblind are essential.
If children are to attend mainstream schools, it is vital not
only that they have access to specialist teaching themselves but
that their teachers also have specialist support to make the curriculum
accessible. In the past this support has come from the LEA Advisory
Service (often called Sensory Support Services) employing experienced
teachers of sensory impaired children. These teachers have a caseload
of children, covering all kinds of schools across the authority.
But, recently, government has called for a reduction in centrally
held budgets (from which this service is funded) to give the money
directly to schools. This threatens a very cost effective and
efficient use of specialist skills in effectively supporting low
incidence children and their teachers.
The Ofsted report also found that pupils with
SEN made better progress in learning in primary schools than secondary
schools, and that provision at Key Stage 4 and above became much
more difficult to manage. Primary schools were also better than
secondary schools at identifying suitable targets for pupils.
The structure of secondary schools can be a
barrier to the inclusion of deafblind children. Factors that influence
this include:
— the structure of the timetable;
— the increasing orientation towards
examinations;
— large buildings, leading to difficulties
with orientation and the transport of equipment;
— the possibility of an very noisy
atmosphere, which can be with a barrier to learning for children
with sensory impairments; and
— the lack of staff with experience
of low incidence disabilities such as deafblindness.
A further Ofsted report into SEN in mainstream
schools in 2004[3]
found that teaching for pupils with SEN in mainstream education
continued to be of varying quality, with a high proportion of
lessons having shortcomings.
Although it is possible to differentiate the
mainstream curriculum, or to disapply some of its elements, or
both, there is a limit to how far this can be achieved. The more
a child needs to have large parts of the curriculum differentiated
or disapplied, the more difficult it can become to meet their
needs in a mainstream school. A child who cannot follow a mainstream
curriculum with others in the school may not experience positive
feelings about their progress. This will not necessarily promote
a sense of belonging, and may even be a barrier to inclusion.
All children are different; for some it will work and for others
it may not.
"How we measure the success of a school
should not depend exclusively upon exam results but should also
take account of the ways in which it develops pupils' social,
life and communication skills, and effective transition into adult
life."—(Parent)
RANGE OF
PROVISION AND
CHOICE FOR
FAMILIES
For many parents, choosing the school their
child will attend is a decision that causes some anxiety. For
parents of children with a low incidence and complex disability
such as deafblindness, this anxiety can be very much increased.
Sense believes that every parent and deafblind
child should have access to high-quality education and the opportunity
to choose a school that best meets their child's needs whether
this is in a special school, a mainstream school, or some combination
of the two. Parents tell us that they want choice and they want
the same opportunities for choice as they have for their other
children. They want clear information about schools of all kinds
and then they want respect for their decision when they have made
it. A range of options need to be available for all children with
SEN and disability, including those with low incidence complex
needs who do not fit easily into the system.
"We really benefited from having a genuine
choice of schools. With an excellent sensory support service,
a good special school and a welcoming mainstream school we experienced
what many parents don't have—a real choice."—(Parent)
Parents of deafblind children tell us they are
looking for a school that feels right for their child. They are
not looking at labels, like special or mainstream, so much as
the specific areas of support that the school can offer their
child. When thinking about their child's education they are not
focused on other children's needs or what might benefit children
in the future. They are in the "here and now" with their
child and a very difficult decision ahead of them.
Parents are looking for a school that has a
friendly and welcoming approach to their child as well having:
— access to specialist trained teachers
of MSI children (VI and HI);
— one to one support to facilitate
learning and social participation;
— individualised curriculum;
— differentiated materials to meet
their individual needs;
— an appropriate learning environment;
— learning at a pace that takes account
of the dual loss;
— equipment to facilitate learning
and social participation; and
— peers who can communicate.
"Children with severe special educational
needs require a protected and imaginatively designed environment,
a high level of financial and functional support and provision
and a high ratio of skilled and motivated support staff."—(Parent)
INDEPENDENT SPECIAL
SCHOOLS
Whilst there has been an increase in the number
of children with SEN educated in mainstream schools, there has
also been a 10% increase since 2001 in the number of pupils placed
in independent special schools by local authorities. According
to Ofsted,[4]
this trend is at least in part because of the difficulties that
mainstream and some special schools have in meeting severe or
complex needs. For deafblind and multi-sensory-impaired children
the independent charitable sector has been very significant. It
was the non-maintained sector schools that led the way in identifying
the children and developing approaches to their very special needs
as far back at the 1950s. The "low incidence" factor
is at work again here. In these specialist schools families find
that their child's needs are recognised immediately, their communication
methods acknowledged and supported and the therapeutic support
(so essential for a growing number of children) is more easily
integrated into their school day. These schools are valued very
highly by parents. They have confidence that the whole school
understands the needs of their child, whereas often in both local
mainstream and some special schools too, there is a knowledge
gap.
In our sector, we have not seen a growth in
referrals, which has resulted in a number of closures and mergers
of non-maintained schools over the past six years.
MAINSTREAM EDUCATION
= INCLUSION?
Sense is concerned that the Government is coming
under pressure to interpret the concept of inclusion as ensuring
that every child attends a mainstream school. Some of this pressure
may arise from the fact that, in the past, many disabled children
and children with SEN who could have benefited from being educated
in mainstream schools were effectively excluded from them and
discouraged from taking public examinations. However, happily,
there have been significant changes to policy in recent years.
The Special Educational Needs and Disability Act 2001 means that
schools now have to make significant changes to staff training
and the curriculum, and to plan positively to include a wider
range of pupils including children with all types of learning
disability. All schools must now have an accessibility plan. There
is extra funding for schools to help them do this and Ofsted is
monitoring their progress. Nevertheless, as has already been stated,
there is still some way to go with proper implementation of the
Act, and the DfES and Ofsted should take steps to promote its
implementation in all schools.
An argument used in favour of all children with
SEN attending mainstream schools is that children who attend special
schools are less likely to be entered for formal examinations
than children who attend mainstream schools. Research by the Institute
of Employment Studies[5]
found that "formal qualifications … were more likely
to have been achieved by people without statements and those from
mainstream schools, than by those with statements or those who
had been to a special school". However, these statistics
reflect the fact that it is the children with the most profound
disabilities, including deafblind and multi-sensory impaired children,
who are more likely to attend special schools. Children who are
able to take public examinations should be given every opportunity
and encouragement to do so. However, the measure of success for
some children is not examination results, and a child with no
formal language skills will require a very different curriculum
and a different set of measures for successful outcomes to school
life.
True inclusion is not necessarily achieved by
every child with special needs being on the roll of a mainstream
school, particularly if that school is not equipped to meet all
the child's needs. Rather, real inclusion means that every child
has access to high-quality education that meets his or her needs.
In recognising the individuality of deafblind
children some have dual registration, attending a mainstream school
for part of the week. Other children who are being educated in
mainstream schools have certain parts of the curriculum disapplied
in order that they can spend more time on other subjects, or receive
training in communication or mobility skills. Some children attend
special schools. It is essential that this range of provision
continues if all children are to have their needs met.
CONCLUSION AND
RECOMMENDATIONS
Sense warmly welcomes the fact that many children
with SEN are now able to attend mainstream schools. With good
planning and appropriate support deafblind children are making
this choice too. However, a one-size-fits-all policy of "inclusion"
in mainstream schools denies parental choice and could actually
lead to some children being denied the education that is most
appropriate for them.
Sense believes that:
— there should be a range of educational
provision for children with special educational needs;
— every child should receive the education
that is most appropriate for them, whether this is in a mainstream
school with appropriate support, a special school, or some combination
of the two;
— parents should have the best possible
information in order to be able to make an informed choice about
the education of their child;
— deafblind children should receive
a comprehensive assessment by a qualified and experienced person,
leading to a detailed statement of their educational needs;
— deafblind children need support from
appropriately qualified and experienced teachers and other staff
in order to be able to access the curriculum and the social life
of the school; and
— more teachers should be encouraged
and incentivised to specialise in the teaching of children with
special educational needs, particularly sensory impairment.
September 2005
1 DES policy statement of 9 March 1989: Educational
Provision for Deaf-Blind Children. Back
2
Special educational needs in the mainstream, Ofsted 2003. Back
3
Special Educational Needs and disability: towards inclusive
schools, Ofsted 2004. Back
4
Special educational needs and disability: towards inclusive
schools, Ofsted 2004. Back
5
Post-16 Transitions: a Longitudinal Study of Young People with
Special Educational Needs (Wave Two) Dewson S, Aston J, Bates
P, Ritchie H, Dyson Prof A. DfES Research Report RR582 2004.
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