Parents of Children With Disabilities Struggle To Find Schools For Their Children

Umar, a resident of Prayagraj in Uttar Pradesh, was diagnosed with autism, a condition of the brain that presents itself as difficulties with social interactions and learning, before his fourth birthday. However, he is low on the autistic spectrum, according to a therapist IndiaSpend spoke to.

“His issues are mostly to do with speech-language pathologies,” said Sadaf Ahmed, a Saudi Arabia-based psychologist who specialises in working with children with autism and Down syndrome and is familiar with Umar’s case.

There are 561,744 children under the age of 14 with an intellectual disability in India, excluding autism, according to a January 2023 analysis of the National Statistical Office’s 2018 report on disability in India, the latest ‘nationally representative survey that provides data on disability among the general population of India’. About 0.5% of boys and 0.2% of girls, 10-14 years, were on the autism spectrum, found a 2017 study by the Indian Council of Medical Research (ICMR), based on data from the Global Burden of Disease Study.

Their pathologies manifest in different forms, such as delay in development, difficulty in following instructions and grasping concepts, according to Ahmed.

The teachers at Umar’s current and previous schools have not managed to teach him to read or count. Since there are limited facilities for children like him even in special schools, his progress on all metrics of performance has been slow, says his mother.

Children with special needs, like Umar, not only need schools with trained therapists and educators, but also specialised pedagogy tailor-made for their abilities, said Indumathi Rao, Regional Adviser at Bangalore University’s Community-Based Rehabilitation Network that works to educate children in an environment with which they are familiar. “There are few places in India where such a learning option is available to children with special needs, and that also mostly through NGOs.”

With little help from the state, parents step in to become therapists and teachers in addition to caregivers. The help that a child receives is directly proportional to their parents’ understanding of their condition and their ability to pay, our reporting found.

RTE not enough, children need better-equipped schools

Government-funded inclusive education in government-aided and -recognised schools is a right of people with disabilities under the Rights of People with Disabilities Act of 2016, which includes autism and intellectual disability.

In addition, a 2012 amendment to the Right to Education Act, which entitles all children between the ages of six and fourteen to free and compulsory education, brings disabled children under the ambit of the Act, according to Protiva Kundu, an economist and expert on government financing of education with the Centre for Budget and Governance Accountability. A 2022 amendment to the Act also mandates that all schools have at least one special education teacher for every 10 children with a disability enrolled up to grade V and one for every 15 students with a disability enrolled in grades VI, VII and VIII.

But enrolling children with special needs in neighbourhood schools unequipped to meet their needs is not advisable, said Ahmed. “In a classroom full of children with no intellectual disability, you will have children who need additional help at times. Forcing a ‘Child With Special Needs’ (CWSN) to conform to the requirements of the conventional schooling system may result in them developing an inferiority complex.”

One such child is Mariya* (7) who has Down syndrome and also shows speech-language pathologies. After being rejected from several schools, her mother used the RTE to get her admitted to school on the condition that she will provide all the additional coaching and help that her daughter needs by herself. When IndiaSpend reached out to Mariya’s school in Mumbai, they said they did not want to comment.

Like Mariya’s and Umar’s mothers, Nasira* (55) tried to get her son help when he was younger. Nasira is a special needs educator herself, and her son accompanied her to her classes at a centre in Mumbai when she was undergoing her training. The centre turned her away when she wanted to enrol him there full time, as did all the other special schools she approached, because they said his disability was too ”profound”. “No teacher can handle more than three children like him at a time,” she told IndiaSpend.

Nasira would have liked it if her son could go to school, but she was apprehensive about the schools she approached because they all contained several potential accident risks (like low railings, concrete grounds, etc.). “What shook my confidence was when they asked me to stop feeding my son cheese as it would make him stronger and harder to control, or to stop dressing him in nice clothes as he was likely to soil them,” she said. “It sounded plain cruel.”

Now 26, her son Rahil* is over six feet tall and towers over both his parents and his younger brother. However, given his lack of ability to adapt to the environment outside, he remains confined to their third-floor flat in Mumbai.

“For these children, we advocate for the concept of community-based rehabilitation and home-based preparation before the child is ready for school,” says Rao.

Light colours and open spaces are precisely what he needs, adds Ahmed. “For such children, I recommend rooms with pastel-coloured walls and plenty of open spaces so they can explore sights and textures. They also need frequent breaks from all activities and exercise.”

In addition to a calming environment, the metrics of performance for them [children with intellectual disabilities] are more rigorous, said Rao. “We have to ensure that the child is retaining 100% of all that they are being taught, unlike the 30-40% requirement for other children, to ensure that there is a stock of learning.”

The curriculum taught to them is also different, focusing on knowledge that is essential for them. Every detail is meticulously planned. “There is no learning unless the concepts are put to use. Therefore, transition between levels, imparting vocational skills, etc.--all of this has to be planned”, she added.

IndiaSpend has asked the Ministry of Education and the Ministry of Social Justice and Empowerment about the measures implemented to provide inclusive education in government schools. This story will be updated when they respond.

Special education, therapy can help CWSN become independent working adults

It is not that autism or other such learning disabilities automatically disqualifies the sufferer from attaining success. Albert Einstein and Sir Isaac Newton were believed to be autistic by some scientists; actors Daryl Hannah and Anthony Hopkins are other examples of people with autism doing exceptionally well.

At least one child with Down syndrome has grown up to become an astronaut with the National Aeronautics and Space Administration (NASA) in the USA. NASA also runs a special programme for children with autism to provide them research and employment opportunities in the field of science, technology, engineering and mathematics.

The Government of Canada has a programme called Ready, Willing and Able which prepares workplaces to welcome employees with autism and other intellectual disabilities.

“If you spend enough time with such children, you will realise that intellectual disability is actually the absence of unnecessary knowledge,” is how Rao puts it.

However, these avenues are not available for children with special needs in India. Even hobbies are not encouraged, given the emphasis on conventional careers. “In India, parents want their children to pursue hobbies only if they can be turned into lucrative careers,” said Ahmed. “They don’t allow their children to slow down and explore.”

Parents often come to Ahmed with a timeline in mind, expecting to see results after a particular number of sessions. To them, the goal is for their child to go to regular school as soon as possible, which leads to anxiety. They do not realise that this is a developmental issue that will never fully go away. “The best they can do is accept their situation and align themselves with normal life,” she said.

At Umar’s school in Prayagraj, there are children with Down syndrome, microcephaly, visual impairments, and other disabilities, all in the age group of 13 to 18. They engage in activities like singing, gardening, colouring and playing games. Umar displays no enthusiasm for colouring or reading, but is willing to participate in other activities. The children are not forced into doing things they dislike or are unable to do.

This laidback approach works by not oversimulating their brains. However, the children have little to show for the hours they spend in school.

While his parents credit his school for some of the progress Umar has made, they think he could benefit from more attention and patience from his teachers.

Children with special needs require a very different atmosphere in school. “They need pets in their schools, preferably a large water body, and walls with paper on which they can draw,” Ahmed told IndiaSpend. “Pathways that are raised three to four inches above the ground can help teach them the concept of balance. Teachers have to come prepared to be kicked and spit on. They can’t wear bright-coloured clothes or jewellery. And most of all, the children need patience from teachers and parents.”

Since this kind of school is not available anywhere around where she lives, Zarreen can see only one way out: move her family to the USA or Canada. “I am waiting for my older son to start college so I can be content that he does not need my presence here,” she said. “Then I will turn my attention to Umar.”

Teach them to be independent, then make them productive: experts

Zarreen and her husband Imran are religious about Umar’s therapy, braving all logistical difficulties to ensure Umar attends every session. “The therapist told us we could teach him to fix his gaze by making him follow the flame of a candle in a dark room, so we did that every night for years,” Imran told IndiaSpend. For Umar’s speech development, they make him blow out candles and practice sounds at home, in addition to the sessions he attends with his therapist. “I heard from someone that if I traced the outline of a picture with a glue gun, Umar would learn to colour within the lines, so I will order a glue gun and get him started on that soon,” said Zarreen.

Umar is accustomed to social gatherings and is open to following instructions. If he becomes particularly obstinate in demanding something--such as going for a ride with his father or taking a bath over and over again--the threat of a haircut from his barber usually makes him accept defeat.

While it is too soon for his parents to worry about his source of livelihood, most parents of children with special needs have accepted that their child will be dependent on their siblings for their needs, parents of children with disabilities said. However, that does not have to be the case. “All artisanal families who practise carpentry, trading, weaving, etc. can pass their family trade to their autistic or Down syndrome child just like they would to their other children,” said Rao.

“There are some jobs that are inherently suited to their special talents,” said Ahmed. “The most beautiful example that I have come across is a special needs student who grew up to be a special needs educator herself.”

‘Want to identify his abilities and work on them’

Umar could talk quite adequately until he suffered a bout of seizures just before his fourth birthday. At this point, he lost his vocabulary, and also forgot his toilet training.

It was hard for his mother to accept his diagnosis. “I could not believe he was autistic because he was doing fine and had met all the milestones a three-year-old had to meet,” she recalls. The doctors told her that this was typical of autism. “Building ready ho gayi phir gir gayi,” (the building crumbled after its construction was complete) is how they explained it to her.

A decade after her son’s diagnosis, Zarreen is content knowing that the physiological systems for speech exist in her son, and that therapy can help him regain his ability to speak. In the meantime, she would like to tap into his love for sports, an area in which his tenacity and extraordinary hand-eye coordination could help him. He has never seen a basketball he can’t catch, according to his mother.

“He played with adult men (his uncles) who could easily have knocked his teeth out with a pass forceful enough. But he caught the ball each time it was passed to him,” recalls Zarreen. His school however has no facilities to engage the children in sports, and she is not keen on making him play with other children his age outside the safety of his school.

Umar plays squash against the walls of his living room at home. “[Olympic medal-winning swimmer] Michael Phelps is autistic, as was the protagonist in Rain Man [played in the movie of that name by Dustin Hoffman],” Zareen said. “If only we could find the extraordinary faculties that are crowding out the ability to do mundane tasks in these children’s brains, we would have so many wonderful special skills at our disposal.”

The education system at present marginalises their needs and has almost nothing to offer them for their abilities. “Special education is essential for them and for other children. Without it, we will end up polishing the pebbles and losing the gems,” said Rao.

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