Why is TN Government letting down Persons with Multiple Sclerosis; Awareness on Multiple Sclerosis on World MS Day 30th May

• Awareness campaign by Multiple Sclerosis Society of India (MSSI)
• World MS Day celebrated in 87 countries all over the World.
• World  MS Day Celebrated this year theme - MS CONNECTIONS

Chennai, May 30, 2022: Multiple Sclerosis Society of India (MSSI) today organised Awareness campaign coinciding with World  MS Day which falls on 30th May. Neurologist Dr.Bhuvaneshwari Rajendran, Kauveri Hospitals spoke on the causes, symptoms and treatment of Multiple Sclerosis. MSSI Chairperson Ashokan, Secretary Ann Gonsalvez and Jt Secretary Smitha participated in the awareness meet.

Youtube Video👇👇

Multiple sclerosis is one of the specified disabilities under the Rights of Persons with Disabilities Act (RPDA) 2016. Government of Tamilnadu has reconstituted the TN Welfare Board for Persons with Disabilities, which is presumed to be yet another powerful and democratic body equalant to the State Advisory Board under RPDA 2016.

With a total of 21 disabilities including Multiple Sclerosis being recognised under RPDA 2016, representation of persons with disabilities from a mere 5 traditional disabilities i.e. locomotor impairment (11 representatives), Visual Impairment / low vision (1 representative each), Deaf (1 representative) and Dwarfism (1 representative), were considered while revising the TN Welfare Board for Persons with Disabilities, dismissing all the other newly added/health disabilities.

(L to R) MSSI Jt Secretary Smitha; MSSI Chairperson Ashokan; Neurologist Dr.Bhuvaneshwari Rajendran, Kauveri Hospitals; MSSI Secretary Ann Gonsalvez

The selection process for TN Welfare board for differently abled persons was completely closed without any public discussion on the representations of persons with disabilities from all 21 disability constituencies mentioned in RPDA 2016. None of the newly added disabilities including the complicated health disabilities mentioned in the schedule of RPDA 2016 such as acid attack survivors, sickle cell disease, Multiple sclerosis, Thalesseinia etc are represented in the new TN Welfare board 2022. This is in sheer violation of UNCRPD and RPDA 2016 which claims to be aligned with the spirit of UNCRPD, Nothing about us without us!

Further, a representative / expert from a traditional disability sector would not be able to decide on the course of treatment, rehabilitation, reasonable accommodations, high support, independent living and dignified holistic empowerment of persons with health disabilities. For instance Persons with Multiple Sclerosis experience a variety of issues due to MS such as unusual Fatigue, bladder / bowel incontinence, diminished sensations (including touch), varied level of sensitivity to pain, muscle wastage, lessened grip (in feet also as it leads to slip/trip/fall), imbalance, spasticity, inability to stand / walk continuously, frequent relapses with varied intensity, long or no recovery from relapse, cognitive dysfunction, fluctuation against stability / improvement / cognition, seizures / neurotic cramps/ other associated conditions / ailments due to the major condition or immune deficiency and their frequencies / intensity, inability to cope with different climatic conditions, seating arrangements, certain diets, unhygienic environments, pollutions, allergies, etc. 

Quality Medical Treatment and other therapies being expensive also lead to poor quality of life for persons with Multiple Sclerosis & other health disabilities. Therefore persons who have direct knowledge about the issues faced by persons with health disabilities including multiple sclerosis shall also be included as members in the TN Welfare board for persons with disabilities so that the Board can discharge its duties equally to all persons with disabilities including multiple sclerosis and other health disabilities.

In addition, neurologists and other specialist doctors in lines with all health disabilities should be immediately included in the medical board for assessment & certification of persons with newly included/ health disabilities. The medical team shall be provided training and guidelines for functional assessment of disabilities including health disabilities such as multiple sclerosis rather than the traditional non-functional assessment of disability. The medical board shall have representatives from the disability sector and health disability sector to advice with respect to functionality and practical issues faced by persons with disabilities based on UNCRPD.

Therefore members in the Welfare Board as well as the Medical board should have representatives from health disabilities sector including multiple sclerosis with adequate knowledge and experience to evolve adequate support systems to persons with multiple sclerosis and other health disabilities beginning from strategies for functional assessment of disability for multiple sclerosis and other health disabilities.

Public participation is indeed a fundamental aspect of many administrative and legislative decision making in Democratic countries. Therefore, Welfare Board shall take inputs from the stake holders once every 6 months, from: rural and urban areas, towards the effective functioning of the board. Consultations shall also be conducted with medical board and stake holders at the local level as many such conditions (also genetic / metabolic / rare diseases) can be defined and procedures for assessment of disability for the same can be evolved effectively by holding such discussions.

Multiple Sclerosis Society of India, on World MS day (World MS Day - 30th May 2022), urges the Government of Tamilnadu to include representatives from Multiple Sclerosis Society of India, Chennai (that has been tirelessly working for the welfare of persons with multiple sclerosis all over Tamilnadu) in the TN Welfare board for persons with disabilities 2022 & TN Medical board for assessment of disabilities at the very earliest. MSSI, Chennai also urges TN Government to conduct stakeholders' consultation every 6 months towards effective functioning of TN Welfare board & Medical Board on assessment of disabilities.

We are also lighting up important buildings like Ripon Building, Express Avenue, etc. As allies in the media, we look forward to your support in carrying the message across, towards an effective implementation of the same.

For further details, please feel free to contact Mrs. Ann Gonsalvez, Chair Person, MSSI Chennai Chapter@ 9962100256/9884314021/66240358 and Ms. Smitha Sadasivan, Member, MSSI @ 9840087540.

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