Living with Autism in India: Resources and insurance

 

The most important aspect of caring for a dependent with Autism is consistent ongoing treatment. Additionally, parents also need to ensure that the child is taken care of when they are not available or able to. What are the resources that they can avail? What about insurance?

The Internet can be an overwhelming place for a parent researching on autism. There is too much information to sift through and yet none enough pertinent. Where do you turn to for the most relevant information? What resources and facilities are made available by government and voluntary organisations for autistic individuals? What about insurance? What's covered by insurance if you have an autistic member in your family?

All about autism

The word 'autism' refers to autism spectrum disorder (ASD), a broad range of conditions characterised by challenges with social skills, repetitive behaviours, speech and nonverbal communication. There are many subtypes of autism, most influenced by a combination of genetic and environmental factors. Asperger Syndrome is now classified under the single umbrella term, ASD.

It can be hard to understand why people on the autism spectrum behave the way they do. ASD can affect a person's ability to interact with the world around them and lead to repetitive behaviours or a narrow range of interests and activities. Often, autism is also accompanied by sensory sensitivities and medical issues such as gastrointestinal (GI) disorders, seizures or sleep disorders, as well as mental health challenges such as anxiety, depression and attention issues. It is therefore important to be supportive and caring, and remember that the world can be a very confusing place for them.

There is no cure for ASD. Early intervention and working with specialised healthcare professionals can change a life. While signs of autism usually appear by age 2 or 3, some associated development delays can appear even earlier and can be diagnosed as early as 18 months. According to research, high-quality early intervention can improve learning, communication and social skills, as well as underlying brain development.

Autism is a spectrum disorder, each person with autism has a distinct set of strengths and challenges. How people with autism learn, think and problem-solve can range from highly skilled to severely challenged. Some people with ASD may require significant support in their daily lives, while others may need less support and, in some cases, live entirely independently.

Autism in India

According to the Action for Autism (AFA), an Indian non-profit, education, training and advocacy organisation that provides support and services to persons with autism, there are over 18 million people with autism in India. An estimated 1 in 59 children in India has an ASD. It is the third most common developmental disorder.

Organisations for ASD

A media report published in April 2019 suggests that there are more than 40 organisations, special schools, parent support groups, and speech as well as behavioural therapy centres to help people affected with autism in India. In the year 1991, some of the parents of children affected with autism started the Action for Autism (AFA) initiative to support people affected by the disorder. The first exclusive school for autism-affected youth, called Open Door, was established in 1994. Today, there are quite a few organisations as well as schools across India that help people with autism. From speech therapy to sensory training, they are using distinct methods to bring about a positive behavioural change among children and adults who are affected by the disorder.

Legal provisions for ASD

On 25 April 2016, the Department Of Empowerment Of Persons With Disabilities through a notification has notified guidelines for the evaluation and assessment of autism and procedure for certification. The Rights of Persons with Disabilities (RPWD) Act, 2016 has included ASD under the category of disabilities. The RPWD Act recognizes the equality of persons with disabilities and prohibits direct or indirect discrimination based on disability.

Before this, autism was not recognised as a separate form of disability in the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, the primary piece of legislation that provides for the rights of and benefits for persons with disabilities in India.

Those affected by ASD can receive certain benefits under RPWD Act like inclusive education, scholarships, free travel in state transport buses, railway concessions, loans for self-employment and assistance for higher education.

Insurance for ASD

In a 2019 media report, founder of Forum for Autism in India, Chitra Iyer suggested that monthly expenditure for a child with autism can range anywhere between Rs 6,000 to Rs 25,000. While under the National Trust Act 1999, the Indian government offers Niramaya Health Insurance scheme for autistic patients. Currently, baring one, private insurance companies do not offer an insurance plan specifically for autism. All insurers cover autism under mental health issues category.

Conclusion

Adults with autism can be active participants in all areas of community life including social and recreational activities. While not all children with autism will display amazing mental prowess as an adult, with consistent care, therapy and support, they can become functioning and contributing members of the society. Keep learning more about autism. Parents need to be the best advocate they can be for their child. Remember to nurture and nature will follow suit.

ARN : ED/06/20/19336