#ReassessMS – Campaign on Multiple Sclerosis underlines gaps in disability assessment guidelines

The good news is that multiple sclerosis is recognised as a disability in the Rights of Persons with Disabilities Act. The not so good news is that there are huge gaps in the disability assessment guidelines that are impacting the lives of the two lakh people with multiple sclerosis in India. That’s the focus on #StoryOfTheWeek.

I am a MS Survivor, I don’t need your pity. I need only your support to live a normal and dignified life.

Powerful lines communicated through regular, ordinary people from varying backgrounds across India. Most of them don’t look like they have a disability, thereby highlighting the challenges of living with a condition like multiple sclerosis (MS).

These are the voices of from a powerful campaign called #ReassessMS launched by the Multiple Sclerosis Society of India (MSSI).

“MS can attack a person at any age”, says Lakshmi, one of the faces of #ReassessMS. “The small issues gradually become worse. Some of the symptoms are vision loss, nerve pain, and giddiness. We are deprived of jobs and are in mental agitation due to lack of financial security.”

Two lakh Indians live with MS

Many makes MS especially challenging is that many of the disabilities linked to it are simply not visible. This includes fatigue, incontinence and cognitive disorders, to name just a few. This means people living with MS often struggle to find the support they need to cope with the condition.

The good news is that MS is recognised as a disability under the Rights of Persons with Disabilities (RPWD) Act 2016. The problem however lies in the fact that there are gaps in the current disability guidelines that impact people with MS.

“MS-related disabilities are assessed as impairments and not functional disabilities”, explains Renuka Malakar, National Secretary, MSSI. A pan India group, MSSI has eight chapters across the country and reaches out to 3,500 people with the condition. Many people with MS continue to struggle to get disability certificates because the guidelines used for assessing them is vague, she says.

Gaps between RPWD Act and reality

Through #ReassessMS, MSSI is highlighting these gaps.

• The current assessment guidelines do not make it clear which sections apply to a person with MS.
• The guidelines do not take into consideration the ‘Remitting Relapsing’ type of MS which might have invisible disabilities like motor/sensory impairment, speech/bladder/bowel dysfunction, fatigue, depression and cognitive dysfunction.
• No criterion for quantifying the amount of multidimensional disability resulting from multiple sclerosis.

This translates into many people being unable to get disability certificates.

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. We want to show that irrespective of background or age, the process of getting a disability certificate is cumbersome. – Renuka Malakar, National Secretary, Multiple Sclerosis Society of India

To ensure the guidelines are made inclusive, #ReassessMS highlights the real life experiences of the challenges involved in getting a disability certificate.

Support the campaign

Lending their voices to the social media campaign are medical experts who talk about the impact of cognitive dysfunction or fatigue on everyday lives. Among them is Dr Nasli Ichaporia, a Pune-based neurologist. “85-90% of persons with MS experience fatigue and yet, the disability assessment guidelines don’t account for this. It is high time hat the government looks into this”.

The month-long campaign will be followed by recommendations 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”.

To know more about the campaign, click on the Multiple Sclerosis Society of India Facebook page.

The campaign is also on Twitter. 2. Click here.

Watch in Sign Language

Also Read:

• From ground up to policy level, Multiple Sclerosis Society of India speaks for patients