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Equal
opportunities, protection of rights, full
participation, a barrier-free environment
and social security are the cardinal principles
of the persons with disability (PWD) Act
1995.
"Should intractable epilepsy be considered
a registrable disability?" Deliberations
on this theme by the experts: disability
professionals, neurologists, psychiatrists,
clinical psychologists, social workers
and other professionals with an epilepsy-centric
interest was recently the focus of a two
day long closed workshop in Chennai, on
9th and 10th December 2006. Organised
by Neurosciences India Group and hosted
by the TS Srinivasan Centre for Clinical
Neurosciences - Voluntary Health Services.
The workshop was spearheaded by Prof.
ES Krishnamoorthy who currently chairs
the Commission on Neuropsychiatric Aspects
of the International League Against Epilepsy.
The workshop had the active encouragement
and support of Prof. PU Shah, Chairperson
of the Working Group on Epilepsy and Disability
of the Indian Epilepsy Association and
took place with the full participation
of that august body. The workshop also
received financial sponsorship and support
from The Wellcome Trust, UK, one of the
world's best-known medical charities with
a substantive academic stature. The group
was lead in its discussions by eminent
disability professionals with years of
experience: Mrs. Poonam Natarajan, Chairperson
of the National Trust for persons with
Multiple Disability, Shri. Sankararaman,
Secretary of Amar Seva Sangam, and Dr.
Annie Shyam Director of SPASTIN among
others. They shared their knowledge and
experience from the disability angle,
with enthusiasm and the quiet confidence
derived from years of lobbying for the
disabled. This group was complemented
by an equally eminent group of epileptologists
lead by Dr. PC Sethi the current president
of the Indian Epilepsy Association and
Prof. Praveena Shah the President elect
along with many other senior neurologists/
epileptologists and members of the IEA
Working Group on Epilepsy and Disability.
While the Secretary General of the IEA
Dr. HV Srinivas could not attend the workshop,
he was there in spirit, having played
a key role in helping the workshop establish
itself. The workshop was also blessed
by the participation of two senior statesmen
of Indian neurology Prof. G Arjundas and
Prof. Krishnamoorthy Srinivas who shared
30 with this group pearls of wisdom born
from years of astutely practiced clinical
neurology. Even at the outset, it was
clear to all present that they shared
a common belief in which they were undivided.
"Intractable epilepsy (IE) is a disability!"
What was required in the next two days
of brainstorming, was to consider the
multidimensional aspects of IE as disability
and to develop a comprehensive set of
recommendations for national and international
policy-makers to take forward. The caveat
of course was that the link between epilepsy
and disability be established without
adding to the stigmatization and prejudice
that people with epilepsy have to encounter,
thus undoing the excellent work of national
and international bodies. Having accepted
this basic tenet the workshop proceeded
apace to discuss the concept of intractability.
The epilepsy professionals proceeded as
is norm to define and debate intractability
in epilepsy and to discuss the role of
stigma as a contributory factor to disability.
A timely exhortation by Dr. R. Thara,
a Senior Consultant Psychiatrist and Director
of the Schizophrenia Foundation (SCARF),
India, with considerable experience of
developing disability legislation set
the tone for the two-days of deliberation.
"Take off your clinical hats and
put on your disability hats for the next
two days" was her clarion call to
this group. A series of presentations
on the concept of intractability in epilepsy;
comparisons with other medical and psychiatric
disorders; the components of disability
in epilepsy; the role of co-morbidity
in determining epilepsy, all followed
this discussion. The workshop reached
its nadir with the presentation of original
research data on the impact of epilepsy
on the sufferer and their families by
the Mumbai group lead by Prof. PU Shah.
The paper provoked an animated discussion
about the whole terrain of disability
in epilepsy. The discussion concluded
with an excellent, eminently viable and
acceptable suggestion from Professor PU
Shah the chairperson of the IEA Working
Group. Borrowing a leaf from Dr. Thara's
book by putting on her disability hat,
she pointed out that epilepsy was disabling
in a range of circumstances and not just
in the narrow medical context of intractability.
Her wise suggestion was that the focus
on intractability be dropped.Instead,
she suggested that the term "Disabling
Epilepsy" be adopted and that the
group proceeded to propose clear definitions,
diagnostic criteria, parameters for assessment
and diagnosis, instruments for future
use and modifications of health policy
for this construct.
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"Disabling
epilepsy is a disorder characterised predominantly
by seizures that are recurrent and poorly
controlled; associated with considerable
medical and psychosocial comorbidity;
with a range of adverse consequences;
affecting the physical, emotional, social,
occupational and vocational functioning
of the person thus affected".
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It
is noteworthy that the emphasis in this
definition moved from medical intractability
to the wider disability emphasis of role
functioning across a number of domains.
The group consensus was that the diagnosis
of disabling epilepsy would require detailed
information about the seizure episode per
se and its consequences. There was wide
agreement that disabling epilepsy with its
considerable comorbidity would impact on
several areas of role functioning across
the lifespan. Some key areas suggested for
future discussion were:
1. The fear of seizures and the attendant
restriction in activity across the lifespan
resulting in the denial of a range of opportunity
2. Embarrassment and perceived stigma 31
due to seizures resulting in a self or family
imposed restriction of social, occupational
and vocational functioning as appropriate
for age and social station
3. Poor educational and occupational attainment
across the lifespan resulting in significantly
diminished achievement
4. Diminished social achievement across
the lifespan: peer group interaction; marriage
and family;
5. The considerable financial burden of
disabling epilepsy across the life span
The stage was thus set for the First TS
Srinivasan
Neurosciences Working Group's defining moment.
The team from NIMHANS delighted the group
by highlighting the presence of existing
disability legislation. That post-traumatic
fits and epileptic convulsions had already
found inclusion under the legislation on
multiple disabilities came as a shot in
the arm for this group of committed epilepsy
and disability professionals. Indeed, the
Ministry of Social Justice and Empowerment
in 2001 had published guidelines for the
assessment of disability due to these conditions.
It was clear to the group that it had its
work cut out from thereon. The group was
urged by senior members of the epilepsy
community not to reinvent the wheel and
to place emphasis instead on the strategic
augmentation of existing legislation. It
was proposed that the future work of this
group should be to:
Reorient the existing legislation towards
the more contemporary "disabling epilepsy"
concept once this had been comprehensively
defined
To develop clear assessment procedures and
guidelines for diagnosis and certification
To develop awareness among people with disabling
epilepsy and their families about need for
and the existence of such disability legislation
To bring such legislation to the consciousness
of the policy makers at the national level
thereby enhancing the future potential of
many thousand people with disabling epilepsy
To achieve these goals through original
research across Indian centres, Mrs. Poonam
Natarajan summarised what was necessary,
with a unique three A's clarion call for
Awareness,
Advocacy and Action. Spurred on by her and
other disability professionals a decision
was made to form three task forces as part
of this larger working group:
1. Concept development task force lead by
Prof. ES Krishnamoorthy: to define and describe
clearly the concept of disabling epilepsy
and its various component parts
2. Pilot research project task force lead
by Dr. Manjari Tripathi: to develop an assessment
tool for diagnosing and quantifying disabling
epilepsy. To apply this in a multi-centric
manner across the nation
3. Communication and sphere of influence
task force lead by Prof. PU Shah charged
with responsibility of developing a sustained
and effective 3A's approach.
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