Memorandum submitted by The Down's Syndrome
Association
INTRODUCTION
Down's syndrome is the most common form of single
learning disability. There are an estimated 16,000 school-age
children with Down's syndrome across the UK.
The Down's Syndrome Association was founded
in 1970 as a small parent-led organisation. It is now a national
charity with around 19,000 members and regional offices in Northern
Ireland and Wales.
As the DSA has grown, certain issues have come
to the fore. The move towards inclusion—strongly supported
by the Association—has ensured that education issues have
dominated our work in recent years.
Increasingly, we are concerned at the thousands
of enquiries we receive every year highlighting specific educational
problems. The requests for help have developed a familiar ring
as parents have reported difficulties in getting appropriate Statements
of Special Educational Needs, obtaining speech and language therapy,
or battling for a real choice between mainstream and special schools.
This submission reports on the results of a
survey which was undertaken by the Association in March 2004.
The aim of the survey was to obtain a realistic account of the
perceptions of parents of children with Down's syndrome with regard
to obtaining appropriate educational provision (including appropriate
school placements).
A questionnaire was sent to 5,000 parent members
who were recorded as having at least one child with Down's syndrome
between the ages of two and 19 in their family. Where more than
one child was involved, parents were asked to fill in more than
one questionnaire.
A total of 1,500 replies were received and analysed,
with the results published in May 2004 under the title: "Access
to Education—a report on the barriers to education for children
with Down's syndrome." Many of the issues discussed fall
under the headings chosen by the Committee in their invitation
for submissions, and we have summarised our findings according
to these headings. However, full copies of the report can be made
available, if Committee members would find them useful.
1. Provision for SEN pupils in mainstream
schools
1.1 67% of primary age children and 27%
of secondary age children were in mainstream schools.
1.2 Most parents were happy with their child's
mainstream placement, with only 2.2% of parents with children
in mainstream schools reporting that they would like a move to
special school.
1.3 56% of parents of children in mainstream
schools said that they would like more support for their child.
1.4 69% rated their child's support staff
as "excellent" or "very good" although many
comments showed concern about lack of training forteaching assistants.
1.5 36% of parents reported that there was
no quantification of provision in their child's Statement.
1.6 With regard to speech and language therapy
provision, 62% of parents reported that speech and language therapy
was recorded under Part 6, rather than under Part 3, with the
result that the there was no duty on any public body actually
to "arrange" the therapy.
1.7 72% of parents reported that their child's
speech and language therapy had not been quantified on the Statement.
1.8 66% of parents felt that the speech
and language therapy being provided for their child actually met
their needs.
1.9 DSA recommendations:
1.9.1 In the short term, the DSA believes
that specialist information and training should be made available
to teachers and support assistants. In the long term, a nationally
recognised qualification should be made available for LSA's with
a dedicated unit on the specific learning profile of children
with Down's syndrome.
1.9.2 The problem of shortage of speech
and language therapists needs to be addressed, but in the meantime
the Government should make clear that LEAs must buy-in from the
private sector when this is necessary in order to "arrange"
the special educational provision on a child's Statement. It should
be made clear to LEAs that speech and language therapy for children
with Down's syndrome is in 99.9% of cases an educational need,
and should therefore almost always be included under Part 3 of
a Statement. Also, it is a stable need (ie not liable to unexpected
or rapid change) and therefore should normally be quantified.
2. Provision for pupils in special schools
31% of parents of children in special schools
reported that they believed their child needed more help than
they were getting.
2.1 Most parents were happy with these placements,
with only 2% saying that they would like a change to a mainstream
school.
2.2 11.6% of parents preferring a move said
they would prefer a unit within a mainstream school.
2.3 The difficulties with regard to speech
and language therapy when children are in mainstream schools are
also experienced by parents whose children are in special schools.
3. Raising standards of achievement
3.1 Parents' comments suggest that there
is a general problem of low expectations for children with Down's
syndrome eg:
"The attitude is complacent and the comment:
`He is doing very well for a Down's boy' sums it up.'"
"My experience on the whole, with people,
is that wherever we go people assume he is far less able than
he is."
3.2 Increased training for Learning Support
Assistants is relevant to the issue of raising standards (see
1.3, above).
4. The system of Statements
4.1 The vast majority of children with Down's
syndrome eventually receive a Statement of Special Educational
Needs, but 33% of parents reported that they had experienced difficulties
in getting a Statement for their child.
4.2 43% of parents said their Statement
was not written in an acceptable way when they received it at
the proposed stage.
4.3 The comment with regard to lack of specification
under 1.6, above, is relevant to parents' views on Statements.
Unfortunately, the significance of "quantification"
may not become apparent until too late:
"When we received our Proposed Statement
we were asked if it was acceptable to us. Never having
seen a Statement before we said yes. Now three years on we have
a seven year old with severe speech problems and no provision
within his Statement for specific speech therapy."
4.4 DSA recommendations:
4.4.1 It is unacceptable that so many parents
have to struggle at proposed Statement stage to get a Statement
which makes clear how much help their child is entitled to. It
is equally unacceptable that parents have to threaten to, or in
some cases actually have to, appeal to the Tribunal in order to
get their child's provision quantified on their Statement. Parliament
intended LEAs to be under a duty to produce Statements which protected
children's special educational provision. Vaguely written Statements
do not do that. Action needs to be taken against LEAs that persistently
fail to fulfil their duties towards children with special educational
needs and we ask that the Select Committee recommends that the
Department for Education and Skills considers this as a matter
of urgency.
5. Disability Discrimination
5.1 Almost one third (32%) of parents reported
that they had encountered discrimination or prejudice from professionals
within the education service. Some of the comments made were:
"I have encountered indifference and
discrimination from the owner of the nursery. She didn't want
my son to be in the Christmas nativity play and she had enough
to do without having him there as well."
"When I have spoken to Heads . . . I
have had some horrible comments about Down's syndrome, for example:
We have good grades here, that won't continue if your daughter
comes here."
"My main issue has been prejudice, particularly
looking at Primary Schools. One teacher . . . said "Some
of them can be quite violent, can't they?" Another comment
was "Most children with Statements go elsewhere. We once
had a child with a Statement and it just didn't work."
5.2 The amendment to the Disability Discrimination
Act would seem to have had very little impact on professionals
working within schools. Very few parents bring claims of discrimination
against schools, opting instead to try to find a more positive
and more caring school for their child. Unfortunately, this response
risks encouraging schools to be unkind to children with Down's
syndrome as a way of reducing their work load.
5.3 DSA recommendation
The Select Committee should recommend that the
DfES commission research into parents' perceptions of the incidence
of disability discrimination in schools, into the reasons why
so few schools seem to be aware of their duties under the Act,
and into the reasons why so few parents are using their right
to bring a claim against a school when staff have discriminated
against their child.
September 2005
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