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MSSI urges govt to ensure passage of Rights of Persons with Disabilities Bill in upcoming Parliament session
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Laxmi Yadav, Mumbai
October 29 , 2015
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The Multiple Sclerosis Society of India (MSSI), a charitable trust working for the welfare of patients suffering from multiple sclerosis across the country, has urged the Union government to ensure the passage of Rights of Persons with Disabilities Bill 2014 in the forthcoming winter session of Parliament.
The Bill which repeals the Persons with Disabilities (Equal Opportunities Protection of Rights and Full Participation) Act, 1995, has expanded the number of benchmark disabilities from seven to 19 including multiple sclerosis. As per the Bill, persons with benchmark disabilities are defined as those with at least 40 per cent of any of 19 specified disabilities.
‘Multiple sclerosis’ refers to an inflammatory, nervous system disease in which the myelin sheaths around the axons of nerve cells of the brain and spinal cord are damaged, leading to demyelination and affecting the ability of nerve cells in the brain and spinal cord to communicate with each other.
Sheela Chitnis, national vice president and chairperson, Mumbai chapter of Multiple Sclerosis Society of India said “There are an estimated 80,000 to 100000 cases of multiple sclerosis in India. Multiple sclerosis is more widespread than originally thought. In each case symptoms vary. It is unpredictable disease of the young adults. Symptoms of diseases-- unusual fatigue, loss of balance, dizziness/vertigo, blurred vision are often mistaken for laziness of the affected persons. Employers and family members who are ignorant about the disease consider that the affected persons are making excuses to avoid work.”
Chitnis, who started the Multiple Sclerosis Society of India in 1985 after her husband was diagnosed with the disease, said “The disease can be diagnosed by MRI. Multiple sclerosis is not fatal disease but it affects quality of life. A patient has to take injection costing Rs.1200-1400 alternative days to maintain quality of life. It is unaffordable for poor patients. Due to lack of resources they move to homoeopathy, ayurveda which are cheaper than allopathy but it is ineffective to maintain their quality of life.”
“Taking serious note of expensive drugs, we have urged the government to lower taxes for multiple sclerosis drugs to make it accessible to poor patients,” she added.
Welcoming the Rights of Persons with Disabilities Bill, she said “Once the Bill is passed by the Parliament, it will become easier for multiple sclerosis patients to get disability certificate providing them several benefits including right to free education up to 18 years of age, provision of reasonable accommodation, 5 per cent reservation of seats in higher education institutions and government jobs, schemes for the allotment of land at concessional rates, and other affirmative action programmes.”
She added “Once the Bill is passed, the appropriate governments, within a period of one year from the commencement of this Act, need to provide incentives to employers in the private sector to ensure that at least 5 per cent work force is composed of persons with benchmark disabilities within a period of five years from the commencement of this Act.”
“This is welcome step. As of now, the patients are forced to leave job in absence of any policy initiative. As per the existing law, the employers are not bound to provide jobs to people with disabilities. The new law will definitely cater to needs of patients suffering from multiple sclerosis as well as other specified disabilities,” she said.
Appropriate governments shall grant financial assistance to registered institutions to provide services and to implement the schemes and programmes in pursuance of the provisions of this Act. It also contain provision of setting up of National Fund for Persons with Disabilities in this regard.
The Central and state governments are required to establish a National and State Commissions for Persons with Disabilities, respectively to inquire into matters relating to deprivation of rights and safeguards available to disabled persons, monitor implementation of the Act and utilisation of funds disbursed by governments for the benefit of disabled persons.
Talking about the other provisions of the Bill, she said “The Bill confers several rights and entitlements to disabled persons. These include disabled friendly access to all public buildings, hospitals, modes of transport, polling stations, etc. Once the bill is passed, the concerned authorities have to make all existing public buildings accessible to disabled persons within five years.”
Multiple Sclerosis Society of India with its 12 branches across the country provides free medicines, physiotherapy to patients at their places. So far 4000 patients have benefitted from the society's initiative.
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