'Invisible disabilities remain overlooked in public policy'

ldquoMadhi Badmash bachcha Come and say hirdquo hollers the Parelbased mother and autism activist ndash Mugdha Kalra at her son After minor resistance her son arrives and waves at this writer through the computer screen on a video call While he avoided making eye contact his greeting was heartfelt and topped with warmthMadhav 14 son of Mugdha was diagnosed as being on the autism spectrum when he was 4 While Mugdha has spoken extensively about bringing up a neurodiverse child she is now onto raising awareness about the importance of building a community of parents who can support each otherTo help autistic children she has cofounded Not That Different ndash a childled movement that focuses on inclusion and understanding neurodiversity The project is the outcome of a collaboration between Mugdha and Nidhi Mishra founder of Bookosmia It comprises a comic strip in which Bookosmiarsquos 12yearold persona Sara introduces her readers to her new friend Madhav a child on the autism spectrum Through Sararsquos journey of meeting and accepting someone a little different one can understand what being neurodiverse entailsldquoAutism is a developmental difference that influences a personrsquos worldview and their social engagements However what one fails to realise is how societyrsquos understanding and acceptance can positively impact the lives of autistic children and their familiesrdquo Mugdha shares with MiddayAlso Read Health cover denial sparks mothers advocacy for autistic sonSystemic issues that affect the growth of autistic childrenldquoThe government does not prioritise the creation of specialised policies for individuals with invisible disabilities indicating a lack of recognition for their needs and challenges opines Mugdha Over a period of time she has set 4 goals that she is primarily tackling to help the development of neurodivergent childrenCurriculum crisis In India there is currently an absence of a tailored curriculum specifically designed for functional academics catering to children with special needs This gap continues as there are no educational reforms to enforce the diverse learning requirements of these childrenLack of awareness on therapy Is there a system by which the government is giving any kind of license to practice to the number of people who have now mushroomed in the name of therapy ndash questions Mugdha highlighting the grave issue of selfanointed therapists that are emerging How does one get to know which therapy center or which professional is qualified to be doing what they are doingNo health cover Autism and Downs Syndrome fall under the category of intellectual disabilities as per the Rights of Persons with Disabilities Act 2016 This Act obligates the central and state governments to design schemes ensuring inclusive insurance coverage for persons with disabilities ndash however insurance companies breach these regulations by refusing coverage or denying claims of individuals living with neurodivergenceDisability certification It requires 14 sittings spanning over 3 months to obtain the Unique Disability ID UDID Card Usually these sessions get extended leaving parent and their specialneeds children harassed by the inefficient ways they are carried elaborated later in this articleData deficit for policy formationRegrettably Mugdha sees little hope for progress particularly because this disability is invisible making it less likely to receive attention Despite the recent efforts of the National Health Scheme to conduct a survey it appears that individuals with invisible disabilities may not be adequately accounted for in the data collection processldquoAny matters concerning invisible disabilities or disabilities in general remain overlooked Without a specialised census focused on data collection for individuals on the spectrum or those with invisible disabilities theyll never be important enough for the government So why do you see today blind association or the blinds in the country have the most solid presencerdquo asks the autism activist MugdhaIndeed the visibility of blindness makes it impossible to conceal and since individuals who are blind typically do not have cognitive impairments and are functional they tend to receive the most support Similarly those who use wheelchairs often receive significant assistance However individuals with invisible disabilities face stigma and taboo which complicates their access to support and understandingThe issue primarily lies in the lack of acceptance remarks Mugdha ldquoParents often hesitate to openly acknowledge that their child has an invisible disability Consequently accurate statistics on the prevalence of these disabilities are lacking Without this data the government may perceive this demographic as a small and insignificant grouprdquoWhen disabilities are approached collectively progress tends to be limited However when specific conditions like autism are individually addressed significant strides can be made Its essential to recognise the prevalence of various special needs children across the country and have accurate data to inform decisions regarding school placements and government supportWithout precise numbers appropriate interventions become challenging to implement This highlights a significant gap in addressing discrimination particularly between visible and invisible disabilitiesAlso Read Catch autism early Key steps for early interventionObtaining UDID remains a complex taskDespite the government setting in place certain policies to address the needs of autistic children it takes a lot of time and harassment to get the benefit of those policies shares Mugdha For example obtaining her sons disability certification required 14 sessions spanning over three and a half months While some may consider this relatively quick its worth noting that it typically involves a longer processldquoNow just imagine taking your speciallyabled child to a government hospital which may not have public bathrooms which in the same room is also evaluating your son along with inmates of your local jail You are made to wait in lines for two to three hours for 14 different sessions and you are not even based in Bombayrdquo Mugdha sheds light on the plight of parents and children who have to come from far off to obtain a UDID cardAlso Read How bureaucracy is failing the applicants of Unique Disability IDWhile the disability certificate indeed provides benefits such as access to writers or readers during examinations additional time and permission to use a calculator obtaining it is far from straightforward in our countryMugdha and Madhavrsquos journeyWhen Madhav was diagnosed with autism Mugdha was completely unaware of the developmental condition It took her about three to four years to grasp the concept of autism and truly understand the needs of her differentlyabled son ldquoOur journey began in Bangalore which proved to be excellent in terms of therapy options Following this we relocated to Bombay where his academic intervention beganrdquoWhile Madhav began to make progress in academics it was albeit slow Regarding schools Mugdha has exclusively turned to special needs schools to support her child as mainstream schools even those claiming to be inclusive or integrated often lack the resources to adequately meet the needs of autistic childrenInstead the family embarked on a journey focused on special needs education and enrolled him in specialised schools Now at the age of 14 Madhav continues to attend a special needs school and is passionate about fitness and is progressing at his own pace focusing on functional academicsMugdharsquos career as a broadcast journalist has been instrumental in her efforts to create acceptance around neurodivergent children Apart from raising awareness Mugdha actively engages with parents of children with intellectual disabilities equipping them with valuable tools to support their special needsOn raising a child with a developmental difference Mugdha opines that the initial difficulties are always there till you do not fully accept the fact that you have a differently abled child who perhaps is not neurotypical Once that acceptance takes shape you are ready to embrace the new life as new avenues open upldquoIve been very open with my friends and my family and my neighbours and my collegiate society about the fact that my son is autistic and that he has different needs and that he is going to occupy his deserving space in the worldrdquo says Mugdha who is indifferent to the opinions hurled at her She concludes by sayingIn India everyone will have an opinion on your parenting style Everyone will have an opinion on why in the first place you have a special needs child So the only way to deal with it is to accept that your child is autistic and raise them by prioritising their needs and at all times being prepared to give back answers when tough questions are put to you and fighting for your childs rightsAlso Read Our expert answers some common questions about Autism