Reassess Multiple Sclerosis Patients Under Rights of Person with Disability Act - 2016
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Multiple Sclerosis is a rare disease in which the immune system eats away at the protective covering of nerves. In MS, resulting nerve damage disrupts communication between the brain and the body causing vision loss, pain, fatigue and impaired coordination.
The symptoms, severity and duration can vary from person to person.
In most cases, the disease follows a relapsing-remitting pattern, with short-term episodes of neurologic deficits that resolve completely or almost completely. Some patients may even experience steadily progressive neurologic deterioration.
There are over 2.5 million people affected with MS worldwide. However, a study published in the journal Neurology in 2019 showed this to be an under-representation. The number continues to grow as more people get affordable access to neurologists and awareness about MS increases.
The diagnosis of MS has increased more rapidly among women, who get the disorder nearly four times more than men.
In 2016, Multiple Sclerosis was included as one of the 14 new disabilities in the Right to Person With Disabilities Act, in India. A few months after this was announced, we started witnessing a high number cases where persons with MS (PwMS) were struggling to get disability certificates and benefits accruing from it.
Those who are living with MS, already know the ground realities and challenges.
There is an increasing trend of failure to get disability certificates on-ground, there are systemic barriers such as non-availability of neurologists in the assessment panel, making PwMS wait in long lines in the extreme hot or cold weathers (making their symptoms worse).
What adds to the woes is the lack of awareness about MS!
1. Many PwMS continue to struggle to get disability certificates because
- From the current assessment guidelines, it is not clear as to which sections are clearly applicable to an MS person.
It misses out a majority of the MS population that experiences the episodic nature of the other kind of MS known as Remitting Relapsing MS
- It does not take into consideration ‘Remitting Relapsing’ type of MS which might have invisible disability in the form such as (i) Motor and Sensory impairment, Speech, Bladder and bowel dysfunction (ii) Fatigue or (iii) Depression
- It does not provide a criterion for quantifying the amount of multidimensional disability resulting from multiple sclerosis.
- The assessment guidelines currently directly address the benchmark disability caused by Primary progressive MS. However, primary progressive MS is only 15% of worldwide cases of MS.
2. The number of disabilities for which reservation would be granted under the Rights of Persons with Disability Act, 2016 was increased to 21 and these five disabilities were part of it. Section 34 (1) of the Act talks about the 4 per cent job reservation for people with benchmark disabilites.
Excerpt from Section 34 (1)
(1) Every appropriate Government shall appoint in every Government establishment, not less than four per cent. of the total number of vacancies in the cadre strength in each group of posts meant to be filled with persons with benchmark disabilities of which, one per cent. each shall be reserved for persons with benchmark disabilities under clauses (a), (b) and (c) and one per cent. for persons with benchmark disabilities under clauses (d) and (e), namely:
(a) blindness and low vision;
(b) deaf and hard of hearing;
(c) locomotor disability including cerebral palsy, leprosy cured, dwarfism, acid attack victims and muscular dystrophy;
(d) autism, intellectual disability, specific learning disability and mental illness;
(e) multiple disabilities from amongst persons under clauses (a) to (d) including deaf-blindness in the posts identified for each disabilities:
While enlisting the reservation in jobs, the section does not mention Chronic Neurological Conditions like Multiple Sclerosis and Parkinson’s disease and blood disorders such as Hemophilia, Thalassemia and Sickle Cell Disease.
This leaves many patients, including the breadwinner of many families and other highly qualified professionals bereft of their Right to Equality.
Recently, Reetesh Kumar Naik suffering from a rare chronic blood disorder i.e. Sickle Cell Disease from Chhattisgarh failed to get reservation and relaxation when he had applied for a job.
3. The non-availability of Neurologists in the Assessment Panel results in the need for multiple visits, with long queues and situations that make the symptoms worsen, adding to the pre-existing struggles. There is an urgent need
We want to amplify these concerns and bring to the forefront our need to review the current Assessment Guidelines in the RPWD Act – 2016 so that it becomes more inclusive and applicable to the person for whom it was created in the first place.
Help us in the #ReassessMS initiative by signing this petition, and sharing it as much as you can.
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