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Walking towards hope

R Sriram Srinivas, who has multiple disabilities—mental retardation and spastic diplegia—takes a breather during his yoga session at home. P Settu, his yoga therapist, who has been teaching Sriram two years now, says that Sriram used to be inattentive and restless, but now follows instructions well and has mellowed down significantly.  



Images and text by Naveen P M

Walking towards hope (2/9)

M Vanitha, Sriram's teacher, helps Sriram wear his dance apparel before the start of the 'World Differently Abled Day Cultural Programme' at Don Guanella Special School in Chennai. Due to Sriram's condition, simple tasks such as putting on clothes can become a chore and he often ends up needing some assistance. 


Walking towards hope (3/9)

Sriram rides his bicycle—fitted with a custom-made backrest—flanked by special education teacher, G V Arumugam. Arumugam has known Sriram for 15 years and was initially hired to teach him basic reading and writing skills. On Sriram's parents' request, he started to assist Sriram in walking and then taught him how to ride a bicycle so he could improve his muscle tone. 

Read Sriram's story here


Walking towards hope (4/9)

R Devi helps Sriram read a clock at Sai Sri Ram Training Centre. Sriram has difficulty reading and writing even basic words, and has a hard time grasping universal concepts such as time, date, and money. Devi is Sriram's favorite teacher. Sai Sri Ram Training Centre has eight students with special needs, two teachers, and a domestic help. The school functions from 10 am to 3 pm and keeps the students busy with a plethora of activities such as coloring, computer games, and yoga.


Walking towards hope (5/9)

M R Karthik, physical trainer, subjects Sriram to one of the many "balancing exercises" to improve his balance and correct his "scissor gait". Karthik has been training Sriram for the last two years. "In the beginning, Sriram could hardly stand for a minute on his own and displayed a lot of traits commonly seen in persons with Intellectual Disability (ID), such as lack of eye contact, droning, drooling...," says Karthik.

Read Sriram's story here


Walking towards hope (6/9)

Sriram and his classmates from Sai Sri Ram Training Centre perform to a medley of Bollywood songs at the 'World Differently Abled Day Cultural Programme' held in Don Guanella Special School, Chennai. P Dharani Kumar, a professional choreographer, composed the dance moves for this performance. He visits the school every weekend to teach dance to these students. "Sriram usually has trouble recollecting and executing my dance moves but he stepped his game up through some spontaneous moves," he said. 

Read Sriram's story here

Walking towards hope (7/9)

Sriram is ecstatic after receiving a silver medal for the Standing Long Jump event. His driver, D Alvin (right), and Sriram's mother, R Vanitha, gather around to congratulate him, at the Special Olympics Sports Meet held on YMCA Grounds, Chennai. Sriram shares a special bond with Alvin and the two can often be seen engaging in healthy banter. 


Walking towards hope (8/9)

Sriram does a lap of backstroke at The League Club, Chennai. His parents introduced him to swimming at the age of seven after a doctor suggested hydropathy as treatment. Sriram has been training under U Sathish Kumar, swim coach for children with special needs, for one year now. Sriram won four gold medals in as many events at two swim meets for para-athletes held last year in Tamil Nadu.


Walking towards hope (9/9)

Dr J Paul Devasagayam, Area Director, Special Olympics Bharat, Tamil Nadu, reviews Sriram Srinivas's progress with his mother, R Vanitha, during one of their monthly meetings at his 100-square-foot office in Purasawalkam, Chennai.


Interview: The right to mental healthcare is the heart of the Act

The Mental Health Care Act is set to be implemented in July this year. Dr Soumitra Pathare talks about the roadmap

After seven years of consideration and consultation, the Mental Health Care Bill was introduced in the Rajya Sabha in 2013 and was passed by the Lok Sabha to become an Act in 2017. While the provisions of the Act continue to be debated and compared to existing laws across the world, there’s no argument that the law is leaps ahead of the archaic Mental Health Act, 1987 and is compatible with India’s obligations under the UN Convention on Rights of Persons with Disabilities (CRPD). The Mental Health Care Act 2017 will be implemented starting July 2018. Pavitra Jayaraman from White Swan Foundation spoke to Dr Soumitra Pathare, psychiatrist and Director, Centre for Mental Health Law and Policy, Indian Law Society, Pune about the road ahead and possible hurdles in implementation.

The Mental Healthcare Act will come into force from July 2018. What are you looking forward to?

A lot of discourse has happened on what the act will do, and it has mostly been from a clinical aspect. In my view what is really important is the section on rights, especially the portion on the right to mental healthcare. From the Indian context, this is the first time that we have a legislated provision for a right to healthcare of any kind. It’s a huge change. And that is the biggest implementation challenge that this act is going to face. We don’t have a system in place and our government doesn’t really know how to deal with it. So if the right to mental healthcare is going to be a reality, then it’s going to require the public health system to do different things especially in terms of advocacy. It’s not going to happen on its own and governments will have to be pushed, badgered and reminded of their responsibility. We know so many laws in our country that haven’t been implemented. But at the same time, there are some that have been well implemented, like the RTE Act (Right to Education) or the Consumer Protection Act. And the only reason that happened was because civil society got into the act and boosted it. The other parts of the Act like the portion about admission to hospital is important, but it affects a small number of people. The portions about rights, that is the heart of this act.

The other important element is the right to community living. Which means that provisions have to be made to include persons with mental illness in the community. If that right is exercised, then it will mean that we will reassess the existence of our mental hospitals where people are stuck for life because they have no families to go back to. If this is implemented right then this will mean the state will have to create infrastructure for persons with mental illness to live in the community and downsize mental hospitals.

There have been other positives like inclusion of mental health in health insurance. How long will this take to be brought into effect?

That should happen immediately. Insurance companies just have to edit their exclusion clause and say that mental health is included in their cover. Once the act is in force, if an insurance company says that mental health is excluded, they can be taken to court. They will have to provide policies that provide mental health care on par with physical health. There will have to be parity.

The Act also talks about promoting AYUSH practises as treatment options. Are we equipped?

So when this discussion of the Bill was underway,  the Ministry of AYUSH said they have MD in psychiatry courses in Homeopathy. So they say they have specialists and that has to be taken into consideration.  And the idea of including AYUSH is to provide people with choice. There are many people who will say they don’t want Western biomedicine, and would rather try these traditional systems of medicine. So access to care also means providing access to alternative systems of care. And if you don’t have choice, you don’t have access really. Plus it’s this Government’s policy to promote AYUSH, so the ministry was keen that this should be written into the Bill.

But is there a demand and supply problem? We don’t have mental health experts to ensure treatment for all.

I think this 4500 (of psychiatrists) number is a bit of red herring.  It’s like saying we can’t treat hypertension because we have only 1000 cardiologists in the country. You don’t need psychiatrists to treat the vast majority of mental health problems. Psychiatrists are important, you can’t have a mental health system without them, but at the same time you can’t have a mental health system that only has psychiatrists. If that was true, then there would be no treatment gap in the US because they have 35,000 psychiatrists. Yet they have a treatment gap of 20% or so.

There are innovative models that have been tried and tested in our own country.  All of public health care is not provided by the doctors. We need to create a system that has community based workers, nurses, psychologists and lay counselors. They are cheaper and easier and faster to train.  If you want availability to scale quickly that’s the way to go. That’s why I use the analogy of hypertension and cardiology. You need cardiologists and surgeons to do angiograms and angioplasties, but hypertension doesn’t need cardiologists.

A large part of the implementation now comes down to the state governments?       

That’s right. I have a feeling that the central government will end up providing lots of funds, but the implementation will have to come at the state government level and that’s not such a big problem. For example, if you see the mental hospitals they are fully funded by state governments. So now they will just have to increase the amount of money they are spending. But they can’t make an excuse that they don’t have the money because the law mandates these changes.

What are biggest hurdles in areas in implementing the act in its letter and spirit?

I think the biggest risk is that everybody just pats themselves on the back and goes back to sleep. We can be happy about having put an act in place. The involvement of advocacy organisations and civil society organisations to get involved in the implementation is a crucial ingredient. Which is why the State Mental Health Authority (SMHA) is crucial.

The entire composition of the SMHA has been changed and has a provision to include, caregivers, users and organisations . It’s really important that people in that position actually do the advocacy work. Governments have also been far more progressive in dialoguing with civil society than professionals in the space. So in many ways the time is ripe for an advocacy movement that will help in implementing the act.

What is the role of the SMHA?

They are responsible for the implementation of the act. They will be ones to be questioned. So it’s going to be very different from how it functions currently. The SMHA will also now have a Chief Executive Officer. The act makes provision for a director level person (senior Government Officer)  to head the SMHA which until now didn’t have any full time members. But now finally the buck stops at someone. And getting an SMHA in place is really the starting point of the implementation of this act. Now states are waking up to the idea that there should be a SMHA. 

And there’s the Mental Health Review Commission and Board. States also need to start constituting these...

Yes, and they have a crucial role too. If you feel that your rights are violated or incorrect, then they are the first port of call. Any admission over a period of one month have to be reviewed by the review boards, so you can’t just have people languishing in hospitals. The review boards also have caregivers and users on it and a wide representation that includes someone from the collector's office, a district judge. So they are like a tribunal and they exist in every district and are more accessible. The SMHA will appoint the review boards. So the first step really is for the SMHA to be appointed.

The act is not the best we can do and there was considerable debate even as it was being tabled in parliament. Will we see revisions soon?

No government will look to review a law even before it’s implemented. They will run  the act for 4-5 years and then they can look at amendments based on their experience. We have debated this for seven years, no act can be perfect on the day that it is passed. When we have evidence to show that it doesn’t work, we should change it.

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