Melwin Joy
AUTHOR

Melwin Joy

All stories by: Melwin Joy
#TogetherWeCan – A movement in the rising in Kochi

WHAT is TogetherWeCan?

TogetherWeCan is an advocacy group addressing the rights of children with autism spectrum disorder and other neurological disabilities. It is an informal group that started off as a WhatsApp group and Facebook page, about two years ago. Today, it enjoys the steadfast support of 2000 plus people from all walks of life, including professionals, parents, disability rights activists, media, students, and general public, from across the country and abroad. TogetherWeCan, based out of Kochi, Kerala, is a true indicator of how a small group of committed people can actually make a difference.

WHY is Autism our priority?

Autism is a neurological disorder that renders a child challenged in multiple ways by interfering in their communicative and sensory pathways. No two cases of Autism are the same and till date, no foolproof diagnostic or remedial processes have been identified.

Centres for Disease Control and Prevention (CDC) report of 2016 states, 1 in 68 children are diagnosed as Autistic. CDC reported in 2012, that 1 in 88 children were Autistic in the U.S – a nearly 25% increase from 2006, when the rate was 1 in 110; and a stunning 78% increase since 2000–02, when the CDC first began tracking the disorder and estimated the rate at 1 in 150 children.

Apart from the use of pharmacotherapy for certain layers of sensory disorders and resulting behaviours/anxieties, the major thrust and focus has been on a four-step therapy programme advised for children on the spectrum, to help them become functionally independent and to promote integration into the mainstream.

Speech & Language Therapy, Occupational Therapy, Behavioural Therapy and Special Education are started as early as infancy, for many, could go well into adulthood. For paramedical and rehabilitative health practitioners, this has opened up a veritable buffet of opportunities. As the only avenue of hope for parents of children with Autistic Spectrum Disorder, therapy centres have the opportunity to partner with their “clients” for the long term, getting assured business without ever having to spend on sales or marketing. Word of mouth and referrals provides the bulk of new traffic. All that a therapy entrepreneur needs to work on is delivering consistent, quality service.

WHERE did we begin?

Unfortunately what should have been a clean, logical, process oriented business for the therapist or therapy center ends up being a messy and disorganized venture, with daily encounters with unsatisfied and often irate parents or caregivers. In addition there are unempowered diffident employees who spend the hours but do not produce results. Malpractices are rampant which cannot ever be tracked or controlled for lack of clarity and standardization. What could have been a win-win venture for the therapy center and the children with Autism, is today in deep chaos of mistrust and maltreatment.

Every day, the media carries stories of children with neurological disabilities being physically, sexually and emotionally abused at the hands of therapists or special school staff. Combined with the apparent lack of rehabilitative results that leaves most parents deeply dissatisfied, the atmosphere today is one of confusion and distress.

Faced with this deadlock, parents and a few concerned professionals started TogetherWeCan. Since its inception in March 2015, TwC has been appealing to the government machinery to formulate regulations in rehabilitation, overhaul the therapy curriculum, and ensure the development of best practises & hygiene factors while simultaneously working on raising awareness about Autism and the issues these children face in everyday life.

TwC succeeded in getting the Kerala State Commission for Child Protection of Child Rights (KeSCPCR) to conduct prompt and widespread consultations, an audit of therapy facilities and for a few minimum guidelines to be enforced. Despite petitions to the Ernakulam Collector (2015), the Child Welfare Committee (2015), the Health Minister of Kerala (2015) and finally an appeal to the Health Secretary of the state (2016) there has been no concrete action from the concerned authorities.

TwC has now approached the High Court of Kerala with a Public Interest Litigation (PIL). The PIL seeks immediate implementation to the KeSCPCR guidelines and formation of necessary legislation to ensure children with autism have the right to be accompanied by the primary caregiver in every single instance of rehabilitative therapy.

With the PIL, TwC hopes to remove the fog of ambiguity and ad-hoc anarchy that pervades the rehabilitation profession, and establish a conducive, fair and symbiotic environment where therapy centers and children with neurological disabilities can flourish and thrive.

To make this a matter of Public Interest, the TwC is now running an active video campaign through their social media page on Facebook wherein people from different walks of life, including national level activists, are raising their voice in support.

In most developed countries there are well defined best-practices and regulations, besides systematic audit by the social service wings. By enabling the parents financially through insurance and grants, the children on the spectrum and the therapy entrepreneurs have a mutually rewarding relationship.

In India, regulations with respect to rehabilitation professionals or centres are scant. The curriculum is severely lacking, when it comes to Autism and other neurological disorders, for which the studies are recent and are being constantly updated. Professionals have marginal to nil practical exposure and theoretically learn curriculum that is wholly outdated.

TogetherWeCan sends an appeal to one and all: Together We Must raise our voices for those thousands of children who cannot speak for themselves.

Melwin Joy
AUTHOR

Melwin Joy

All stories by: Melwin Joy