DDB 44 National Autistic Society
DDB 44
Submission to the Joint Committee on the Draft Disability Discrimination Bill
February 2004
Contents: Summary Pages 1 - 2
Full Submission Pages 3 - 7
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SUMMARY
Introduction
1. Autism is a developmental disability
that affects the way a person communicates and socially interacts
with, and relates to, other people. There are a number of diagnoses
that are used to describe the condition clinically: Asperger syndrome
or high-functioning autism are often applied to those at the more
able end of the spectrum, whilst Kanner syndrome or classic autism
are often used to describe those at the less able end. These descriptions,
as presented in individuals are not absolute - some will demonstrate
high levels of ability in some aspects of their lives and low
levels in others. All individuals who have autism however will
have difficulty with social interaction, social communication
and imagination - the now universally recognised "triad of
impairments".
2. The draft Disability Discrimination
Bill if passed in its current state would provide a welcome enhancement
to the lives of many individuals with a disability, including
people with autism. However, The National Autistic Society has
serious concerns about two particular issues:
- the definition of
disability for the purposes of the legislation; and
- the extent to which,
and the speed with which the essential changes relating to discrimination
in modes of transport will be implemented.
3. The National Autistic Society
also wishes to comment on two other areas that it recommends the
Bill should cover:
- employment - inclusion of a
power for employment tribunals to order re-instatement/re-engagement;
and
- education - inclusion of general
examining bodies and school governors
Definition of Disability
4. The DDA 1995 does not adequately
cover the difficulties faced by individuals with autism relating
to the effects of their impaired ability to socially interact
and communicate. Nor does the draft Bill remedy this situation.
Also the Guidance issued under sub-section 3(3) of the DDA does
not mention autism at all.
Recommendations
5. It is recommended that:
1. a new ability be included in
Schedule 1 paragraph 4(1) of DDA 1995 to cover "social interaction
and communication"; and
2. the associated Guidance and Code(s)
of Practice be revised to take account of the inclusion of this
new ability.
Transport
6. Inaccessible public transport
is a major barrier to inclusion for people with autism. The Lack
of accessible transport options literally reduced mobility for
some people with autism, who are confined to their homes as a
consequence. Less visible access issues are being neglected as
the debate around accessible transport focuses on making transport
accessible for people with physical disabilities. Last year
a National Autistic Society survey found that over half of people
caring for a person with autism described using public transport
as difficult for the person they cared for, with 30% describing
it as very difficult.
Recommendations
7. It is recommended that:
- all transport services should
be included in Part 3 of the DDA immediately
- part 5 regulations should be
amended to prioritise accessible audio-visual information to customers
onboard vehicles
- the trigger point for when discrimination
occurs should be lowered to 'substantial disadvantage' so that
accessible information would have to be given throughout a person's
journey
- the Disability Rights Task Force
recommendations on transport to be implemented in full
For further information please contact:
ªenay
Camgöz
Parliamentary Officer / APPGA Clerk
The National Autistic Society
393 City Road
London
EC1V 1NG
Telephone: 020 7903 3769
Mobile: 07766 395896
E-mail: scamgoz@nas.org.uk
SUBMISSION
THE DEFINITION OF DISABILITY IN
THE DDA 1995
Recommendation
That a new ability be included in
Schedule 1 paragraph 4(1) of DDA 1995, namely "social interaction
and communication"
Rationale
1. Responding to a request
by the Disability Rights Task Force in 1999, the Disability Rights
Commission concluded that the list of normal day-to-day abilities
set out in paragraph 4(1) of Schedule 1 to the DDA 1995 should
be revised to include the ability to communicate with others.
Autism is a communication disorder and the NAS would welcome
such a change, but would go slightly further by including social
interaction.
2. The need for change
is well demonstrated by a recent employment tribunal decision
(Mr H v Motorola Ltd - heard on 3 April 2003 and considered by
the Employment Appeal Tribunal on 23 January 2004). The salient
facts are as follows. H has a diagnosis of Asperger syndrome.
The tribunal accepted that he had an impairment at the time of
the alleged discrimination, and that the impairment had a long-term
adverse effect on his ability to interact and communicate with
others, but the tribunal (despite its "considerable sympathy
for Mr H") felt obliged to hold that Mr H's ability to interact
and communicate with others could not be taken into account as
social interaction and communication were not listed in paragraph
4 of Schedule 1 to DDA 1995.
3. On appeal, a "purposive"
approach was taken, the EAT holding that ability 4(1)(g) - "Memory
or ability to concentrate, learn or understand" - was apposite
in that someone who has difficulty in understanding normal social
interaction between people, and/or the subtleties of human non-factual
communication, could be regarded as having their "understanding"
affected and that the concept of understanding was "not limited
simply to an ability to understand information, knowledge, or
instructions".
4. Many employment law
practitioners have long worked on the premise that this broad
approach to the concept of understanding was the correct approach,
but it has also been long recognised that the approach might be
stretching the ordinary and natural meaning of the words in question,
as now demonstrated by the first known challenge in this recent
case. The EAT decision is helpful, but may be distinguished or
not followed by another EAT or by a higher court.
5. The law should be as
certain as reasonably possible, and the inclusion of the proposed
additional "ability" in the Act, together with appropriate
revisions to the Guidance would put the matter beyond doubt.
DDA GUIDANCE
Recommendation
That the Guidance be revised to add
at C20 the ability to interact socially with others and to include
in the list of examples an inability to understand metaphors and
an inability to read non-verbal social gestures such as facial
expressions.
Rationale
6. The Disability Rights
Task Force said in 1999 that:
"There is a common
misconception that disabled people are only those with mobility
difficulties or sensory impairments".
7. We believe that it
is important to clarify that Asperger syndrome is a clinically
well recognised disorder and people with Asperger syndrome have
by definition 'clinically significant impairments in social, occupational
or other important areas of functioning' describes those people
with an autistic spectrum disorder who have average to high IQ
and often relatively good expressive language skills.
8. Autism is often a hidden
disability and this is particularly true of those with Asperger
syndrome. This can mask their underlying, and potentially devastating,
impairments. This is well illustrated by the closing remarks of
the Chairman in the Mr H tribunal:
"Indeed Mr H was
highly articulate and effective in the giving of his evidence
before the tribunal".
This highlights a lack
of awareness of the nature of this condition amongst professionals.
9. As a matter of law,
the Guidance issued under sub-section 3(3) of DDA 1995 must be
taken into account by a tribunal when considering whether or not
an Applicant has a disability for the purposes of that Act. It
is therefore important that the Guidance is as comprehensive as
possible. There is no mention of autism in the current Guidance.
10. People with autism
have great difficulty in understanding non-verbal signals and
unwritten social rules that others understand instinctively.
The proposed amendment to the Guidance would reflect this phenomenon.
TRANSPORT
Recommendation
That:
a) All transport services should
be included in Part 3 of the DDA immediately
b) Part 5 regulations should be
amended to prioritise accessible audio-visual information to customers
onboard vehicles
c) The trigger point for when discrimination
occurs should be lowered to 'substantial disadvantage' so that
accessible information would have to be given throughout a person's
journey
d) The Disability Rights Task Force
recommendations on transport to be implemented in full
Rationale
11. The National Autistic Society
supports the Joint Learning Disability Submission to the committee,
which includes a section on our concerns regarding inaccessible
transport. Inaccessible public transport is a major barrier to
inclusion for people with autism. The lack of accessible transport
options literally reduces mobility for some people with autism,
who are confined to their homes as a consequence. Less visible
access issues are being ignored as providers focus on making transport
accessible for people with physical disabilities. Last year a
National Autistic Society survey found that over half of people
caring for a person with autism described using public transport
as difficult for the person they cared for, with 30% describing
it as very difficult.
12. From 1st October 2004, under
the current DDA legislation, transport service providers will
be required to make changes to their physical features but only
if it makes it "impossible or unreasonably difficult"
for someone with a disability to use them. The draft Disability
Discrimination Bill will mean that transport services will be
included in Part 3 of the DDA for the first time. However, the
physical features of the vehicle would still be left under Part
5 of the current law.
13. Putting transport services under
Part 3 of the DDA would mean that people like bus and taxi drivers
would need to have disability awareness training. If public transport
staff were better aware of the needs of those with non physical
disabilities, more people with autism would be able to travel
independently. The National Autistic Society does not believe
that putting transport services under Part 3 of the DDA places
too much burden on operators. We believe there is an urgent need
for effective disability awareness training for the whole transport
industry because we are aware of ongoing examples of discrimination
against people with autism. One example involved a man with autism
who had a freedom pass was refused access to a bus because
the driver did not believe he was disabled and therefore did not
think he was entitled to a freedom pass. This highlights the need
to raise awareness of non physical disabilities amongst professionals.
EMPLOYMENT - RE-INSTATEMENT
Recommendation
That employment tribunals be given
the power to order re-instatement or re-engagement in DDA cases
Rationale
14. Employment Tribunals
are not currently able to order re-instatement or re-engagement.
The Government has agreed that such a provision should be included
in the Act, but it is not currently included in the draft Bill.
The current consultation paper relating to employment tribunals
also fails to address this issue.
15. The National Autistic
Society is firmly of the view that this omission should be rectified.
Whilst recognising the practical difficulties inherent in an
Order to re-instate or re-engage, the power should be available
to tribunals in the same way as it is available in cases of unfair
dismissal. Not to do so may in itself be seen as discriminatory.
16. An actual example
illustrates the difficulties that can be faced under Part IV of
the Act. Mr S. was a university student on a nursing course.
Students were only permitted to undertake the course if they
were medically able to undertake a career in nursing. At an occupational
health check, Mr S disclosed his diagnosis of Asperger syndrome.
The physician took the view that the fact of diagnosis alone
precluded Mr S from pursuing a nursing career. The university
excluded Mr S. This appeared to be blatant discrimination, but
no claim under the DDA 1995 could be pursued as Schedule 1 paragraph
4(1) appeared to preclude proceedings.
17. Mr S, who might well have proved
to be a good nurse and certainly had his heart set on a nursing
career, was seemingly removed from his professional training due
solely to his disclosure of a diagnosis of Asperger syndrome.
The proposed change to Schedule 1 paragraph 4(1) may or may not
have helped Mr S on the specific facts, but access to the law
should not have been denied and this is a case when the power
to order re-instatement might well have been appropriate as financial
compensation would have been inadequate for the loss of a career
as opposed to a job.
EDUCATION
Recommendation
That the Bill cover: a) General
Examination Bodies
b) School Governors
Rationale
18. The recently published SEN Strategy
states "inclusion is about much more than the type of school
that children attend: it is about the quality of their experience;
how they are helped to learn, achieve and participate fully in
the life of the school." However we believe that without
legislation to protect the rights of pupils during the examination
process, many pupils with special needs will miss out on the opportunities
enjoyed by others. Under current law, schools have a duty to take
reasonable steps to ensure that do not put children with disabilities
at a substantial disadvantage. However, examination boards are
still not covered by the DDA, which means their behaviour cannot
be challenged under the DDA and which can lead to difficulties
for pupils at exam time. The real life example below outlines
the problems that pupils with autism can experience and how these
may be overcome. The NAS is concerned that the special arrangements
that people with autism sometimes need to take an examination
are not as well recognised as the arrangements required by those
with a physical disabilities. Given that autism is a communication
impairment, it may be necessary for a pupil with autism to have
questions put to them in a certain way, for example using non
figurative language.
19. Skill, the National Bureau for
Students with Disabilities has urged the Scrutiny Committee to
recommend to Government that the draft
Bill should include general examination bodies. The National Autistic
Society supports this recommendation.
20. "I can't imagine anyone
anywhere having anything good to say about your son"
Whilst there have been very positive
developments in education in the form of the Special Educational
Needs and Disability Act 2001 and the Government's Strategy for
Special Educational Needs (SEN), comments such as the one made
by a headteacher recently shows that there is a pressing need
for autism-specific training for teachers.
21. A National Autistic Society report
found that between 2002 and 2003, 19.8% of the appeals registered
at the Special Educational Needs and Disability Tribunal (SENDIST)
concerned pupils with autism, although children with autism make
up only 4.6% of the total population of children with SEN in England
and Wales.
Real life example
A Special Educational Needs Co-ordinator
(SENCO) was concerned that a task in the English SAT for Key Stage
1 would discriminate against two Year 2 pupils with a diagnosis
of Autistic Spectrum Disorder (ASD). The English SAT set a writing
task requiring pupils to write a story about a flaw in a person's
character and the consequences of this. The SENCO was concerned
that this would be discriminatory because people with ASD have
difficulties understanding the feelings or behaviour of other
people and imagining the consequences of their own or other people's
behaviour. The writing task required both the ability to understand
the behaviour of other people and its consequences. As pupils
with ASD do not possess this understanding because of their disability
the pupils were being denied an equal opportunity to display their
true writing level.
The SENCO contacted the
Disability Rights Commission (DRC) to ask whether they viewed
the writing task as disadvantageous to pupils with ASD on the
grounds of their disability. The DRC suggested that the SENCO
should write directly to the Qualifications and Curriculum Authority
(QCA) for advice. The QCA agreed to set an alternative writing
task for the pupils with ASD. They were asked to write a description
of a person who behaved in a way that they will never forget.
The QCA contacted all Local Education Authorities to inform them
of the alternative task.
22. The above example
shows how small changes can help pupils with autism to access
the same curriculum as their peers. No particular pathway that
will suit all pupils with ASDs. The key principle is that each
individual affected by autism must be helped and supported to
make a choice appropriate to their needs and aptitudes. Moreover,
it is essential that pupils with autistic spectrum disorders (ASD)
have fair and equal access to the range of qualifications available
to their non-disabled peers.
23. The National Autistic
Society Advocacy for Education Service is aware that some Local
Education Authorities (LEA) are failing to fulfil their duties
under Part 4 of the Education Act 1996. An LEAs failure to fulfil
these duties undermines a child's right to access appropriate
educational provision. This could therefore constitute breach
of the LEA's disability discrimination duties as a public body
if the child meets the definition of disabled for the purposes
of the DDA.
VOLUNTEERS
Recommendation
That the Bill cover disabled volunteers
Rationale
24. Volunteers with autism make
a very important contribution to the work of the National Autistic
Society and we would like to see them covered by the Bill. We
therefore support the Disability Rights Commission's recommendation
10.4.6 to extend the enabling power to cover volunteers as
per the Task Force's recommendation which stated that "Organisation
engaging volunteers should be consulted on the preparation of
guidance and power taken in civil rights legislation to bring
volunteers into coverage through regulations."
Rights in Reality, Broach et al, National
Autistic Society, London; 2003
Rights in Reality, Broach et al, National
Autistic Society, London; 2003
DSM-IV, American Psychiatric Association, 1994
There are a few people diagnosed with Asperger syndrome
who have mild learning difficulties but generally the diagnosis
tends to be used to describe those without intellectual impairment
(ICD-10, DSM-1V
A freedom pass entitles disabled people to free
travel on London's public transport
Employment Tribunals: consultation on draft revised
regulations and rules, DTI, 2003
Comment made by Headteacher to a parent who attended
NAS Help! Programme, 2003
Autism and education: the ongoing battle; National
Autistic Society, 2003
Autism and education: the ongoing battle; National
Autistic Society, 2003
Memorandum to the Joint Committee of the Draft Disability
Discrimination Bill; Disability Rights Commission; February 2004
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