Lets #ReassessMS! The MS campaign making headlines in India

What is #ReassessMS?

There are around 145,800 people living with MS in India, and many of them struggle to access their disability rights.

In 2016, MS was recognised as a disability across India – a watershed moment for the MS community. However, gaps in India’s disability guidelines are preventing people with MS from accessing their disability benefits. Disability certificate guidelines do not specify which sections apply to people living with MS.

‘MS-related disabilities are assessed as impairments and not functional disabilities’, explains Renuka Malaker, National Secretary, MSSI. This means invisible MS symptoms like fatigue, incontinence and cognitive changes are often incorrectly assessed.  The criteria also fails to consider the unpredictable nature of relapsing remitting MS.  Additionally, long waiting lists and poor facilities make it difficult for people managing MS symptoms to attend an assessment. Systematic barriers, like a lack of neurologists on the assessment panel result in misjudgements.  MSSI is fighting to make the disability assessment process more inclusive with the #ReassessMS campaign.

 

‘The main reason we are doing this campaign is to show the government that if the policy is not helping the people for whom it was made, it needs to be reassessed. This has to be done such that it aligns to ground realities and the actual problems being faced by people with MS’. Renuka Malaker.

Supporter stories

The month-long campaign is rooted in the lived experience of the Indian MS community. MSSI has gathered around 400 photos and 50 videos from people affected by MS telling their story.

Arun Kumar talks about his MS journey in a short video.

Indian celebrities have also added their voices to the campaign. Actors like Ms Sabira Merchant, Garggi Ananthan, and Gul Panag sent videos urging the government to act.

Engagement with health professionals

#ReassessMS is backed by healthcare professionals across India. Leading neurologists and doctors from the very national institutes that issue disability certificates have expressed their support.

In a video, Mumbai-based neurologist Dr. Sarosh Katrak says:

 ‘Many aspects of MS like.. tightness in the limbs, visual disturbance, imbalance of walking… and cognitive dysfunction are not given proper weightage. The current guidelines in the RPDA does not take these disabilities into proper account. I fully support this campaign, as I believe who is better to assess the disability of a person with MS than a neurologist?’

The endorsement of medical experts has added weight to the call for change.

Uniting different MSSI chapters

MSSI is a pan-India group with 8 different chapters across the country. #ReassessMS is the first campaign in MSSI’s history to be co-designed and launched by all chapters. The quantity of supporter content would not have been possible without the dedication of MSSI’s countrywide network.

‘All chapters were involved at every level starting from pre planning phase to roll out. Everyone provided inputs on content developments, designing and managing the whole campaign. It was heartening to see that all chairpersons and secretaries were engaged in all meetings related to the campaign…This whole exercise gave them a sense of deep ownership and desire to make the campaign a success.’ Renuka Malaker.
The #ReassessMS campaign has helped to unify the work of MSSI chapters and strengthen their national voice.

Building alliances with the disability sector

The campaign has also opened new doors to working with the disability sector In India.

‘We learnt from the experiences of other organisations like The Leprosy Mission India Trust and Thalassemia Welfare Society that the single organisation approach is not working as they have already submitted their proposals to the Government but have not heard back.’ Renuka Malaker.

MSSI is collaborating with different disability organisations to demand the inclusion of new criteria in the assessment guidelines under the Rights of Persons with Disabilities Act.

Their recommendations will be sent to the Ministry of Social Justice and Empowerment (MSJE). ‘We will be sending our recommendation in writing to them and are hoping to have a roundtable/consultative meeting to review the recommendation’, says Renuka. ‘The ultimate success would be if those guidelines are approved and adopted’.Support the campaign and learn more on MSSI’s website and Facebook page.