A home of their own Update with guwahati assam

by Guwahati_City


FOR the last one month, Bhiwandi resident Ganesh Bhoir is being haunted by just one thought – was it the right decision to send his son Harshal to a home for the mentally challenged?

Harshal, 23, was one of the two people, the other being an 11-year-old boy, who died due to suspected food poisoning at a residential school in Maharashtra’s Igatpuri on August 24. The school was part of Igatpuri Children Welfare Programme run by a private trust – Punyatma Prabhakar Sharma Seva Mandal.

A labourer at a Brihanmumbai Municipal Corporation (BMC) water purification plant, Bhoir also knows that he had no other option.

After Harshal turned 18, he was no longer eligible to go to the day school that he had been attending until then. “It wouldn’t have been possible to keep him home when we go to work. We have three other kids to fend for. The decision to keep him at the home at Igatpuri was taken after much consideration. Following reviews from people with kids at the centre, we also paid a visit there. Now, I keep thinking if things would have been different had the centre informed us right after Harshal fell ill…” says Bhoir.

Bhoir may have his regrets, but parents of several other individuals from the rehabilitation home seem absolutely comfortable with continuing their wards’ stay at the facility. Bhoir perfectly understands why that is the case. “It is difficult to find a good facility that costs less,” he says.

Santosh Bhinnar, a small-scale farmer from Kanadwadi village near Igatpuri, says, “My 15-year-old son suffers from epilepsy; we definitely cannot take care of him at our home. My wife and I both have to go out and work on the farm to ensure sustained income for our family of four.” The story is same for Gangubai Bhale from Bhavli village whose son is also a resident at the Igatpuri centre.

Inadequate facilities

Schools and residential facilities for people with Intellectual Disabilities (ID) suffer from acute paucity of facilities. According to data from census 2011, there are over 1.6 lakh individuals with ID in Maharashtra; around 74,000 of them are below the age of 19. The total intake capacity of schools for children with ID is, however, only 65,390. While 297 of these schools are run by the state government, 496 are privately owned. In addition, there are 14 residential homes run by the state government, five by various Non-Governmental Organisations (NGOs) along with 176 workshops by private entities.

 

Schools and residential facilities for people with Intellectual Disabilities (ID) suffer from acute paucity of facilities.

 

According to information provided by the office of Commissioner for Persons with Disability, Maharashtra, after the implementation of the revised act, a perspective plan was prepared based on the requirement of special schools for persons with ID in different areas. New approvals to special schools are given only if there is a requirement of such a school in the areas where it is proposed.

But according to people working in the field, no such survey has been conducted by the government to identify persons with ID in different areas. Kalpana Mohite, from Abhisar Foundation in Pune, says her organisation is on its way to create a second centre for the mentally challenged in another part of the city keeping in mind the demand for the facility in the area. “Ten years ago, when I moved to Pune with my son, there was a lack of affordable special education options, especially those where different facilities are offered under one roof in a cost-effective manner.”

Challenges before private-run institutions

Abhisar is an example of an organisation largely driven by parents of children who are mentally challenged. This is generally the most-trusted structure in the field of special schools. However, most of them struggle for funds. At a time when the government seems indifferent towards bringing these schools under the purview of grants, for many, it becomes difficult to survive the test of time. Hanumant Khandagale, director of Dhanyawad Divyang Foundation in Kandivali, is on the verge of closing the centre. A special educator himself, Khandagale opened the centre with financial support from parents of children who are mentally challenged. “In order to run a centre for the mentally challenged, the requirements are plenty, considering the needs of these children. Starting from infrastructural requirements such as ground or open space to keep them physically active, ramps and wheelchair friendly washrooms to academic tools, equipment, teachers, assistants, different types of therapists, the list goes on making it a costly affair,” says Khandagale. Adds Mohite, “These children require a huge support system such as speech therapy, sports therapy, occupational therapy, equipment to assist in motor skill among all.”

According to experts, if a child is provided assistance immediately after diagnosis, the development can be remarkable depending on where the individual stands on the spectrum of ID.

Struggle of parents

According to Chitra Iyer, trustee of the Forum for Autism, a major collective of parents of children/individuals with
ID, the question of inadequate facilities comes much later. “The struggle starts from the time when a child is identified as mentally challenged, sometimes at birth. There is absolutely no awareness or a protocol in place by the government to assist or guide the parent for steps to be taken ahead, unlike developed countries. In countries such as the USA, once a child is diagnosed with ID, the family is directed to a dedicated department where they are offered counselling and told about different available options. In India, however, each parent struggles by ways of experiments. This also leads to loss of early intervention programmes which are required for growth of children with ID,” Iyer said.

According to experts, if a child is provided assistance immediately after diagnosis, the development can be remarkable depending on where the individual stands on the spectrum of ID. Founder of a Pune- based NGO Saad, Sunita Lele, who has worked very closely with parents of children with ID for over two decades, says early intervention is a rare scenario. “In most cases, the diagnosis is delayed, especially in the interiors of Maharashtra where there are no facilities for the same. Parents have to come to Mumbai, Pune or other cities for the purpose.” Sharing the story of a daily wage labourer from a remote part of Maharashtra who reached out to her a year ago seeking help for his autistic son, she says, “But he could not spare more than a day as the family lives on hand-to-mouth earning. It had already delayed the process by one year.” Lele has urged the state government to take proactive steps to increase the reach of the facilities.

Challenges in interiors of Maharashtra

For parents of children with special needs, the struggle begins from the stage of diagnosis. But for rural areas of Maharashtra, even a proper diagnosis feels like a luxury. Vijay Jadhav, principal at the Yevrai Special School in Beed, a government-aided residential school for mentally challenged children, says, “The lack of awareness here is unfathomable. It starts with blaming the parents, mostly the mother, and can go up to parents even taking the child to a ‘tantrik’ (occultist) to ‘cure’ them of the ‘evil’,” says Jadhav. “Failing to get any results from such methods, the parents ultimately send their children to a residential centre without giving it much of a thought,” Jadhav adds.

In rural parts of the state, day schools for special children are seldom considered. According to parents, for whom the concept of school is limited to attaining mainstream education, day schools are a waste of time and money. “A residential facility, on the other hand, is considered as a centre to take care of children who are mentally challenged,” says Padmakar More, administrator at Sweekar Residential Special School in Chandrapur.

In addition, there are 14 residential homes run by the state government, five by various Non-Governmental Organisations (NGOs) along with 176 workshops by private entities.

Jadhav says conscious steps need to be taken to tackle the lack of awareness about special education in rural areas.

“It is also important for the government to develop policies addressing rural set-up. NGOs will come forward to start special schools. But the government should begin support, either financially or in other ways of approvals, training, collaborations among all,” says Jadhav.

What the govt is doing

Commissioner for Persons with Disabilities Omprakash Deshmukh says, “We are working on a policy to be presented to the government to provide grant-in-aid for schools on the basis of thorough inspections. The inspection will include a fixed list of parameters that schools will have to fulfill.”

Acknowledging that there are many challenges faced by the special education sector, Deshmukh says his department has begun to address the issue in phases. “First phase is to address the issue of unorganised structure of the curriculum. The department has launched Disha Abhiyan – a project which aims at streamlining the curriculum of special education, especially for children with ID. The idea is to ensure that there will be uniformity in what will be taught across special schools in Maharashtra. While currently distribution of the curriculum and training of teachers is underway, the next phase will be to maintain a portal where each student’s academic and development record is preserved digitally. This will help teachers and schools plan accordingly for the next academic year. These reports will also be accessible in case of transfer of any student,” he adds. The curriculum has been developed by Jai Vakeel Foundation which has been a pioneer in the field of special education for a few decades now. Currently 425 schools, government as well as private, are part of Disha Abhiyan.

Elaborating on the need for standardised curriculum, Archana Chandra, CEO of Jai Vakeel Foundation, says, “There is a wide spectrum of ID, which requires targeted approach depending on specific needs – Academic, Functional or Activities of Daily Living (ADL). Academic goals are for those with borderline autism. If guided well, they can appear for mainstream exams offered by the NIOS. But unfortunately, the NIOS curriculum starts only from Class III level. Under Disha, we prepare a base for such students in terms of identifying letters, numbers and sound.”

Functional goals are for children from the middle range of the spectrum, she adds. “With good support and training they are capable of independently living their life. Apart from basic training, these individuals can be given knowledge on concepts, understanding communications etc along with skill-based training. There are restaurants, coffee shops, and hotels which employ trained individuals having ID. And lastly, ADL goals are for those at the far end of this spectrum, where children are prepared for day-to-day challenges such as using the toilet, eating food among all,” Chandra adds. Chandra believes that if special education is imparted with a targeted approach, the number of ID individuals requiring assistance in the form of residential facilities after reaching adulthood will be reduced.

The way forward

Chandra believes that to ensure inclusive living, the perspective of the society needs to change. When that will happen, the challenges before people with IDs will automatically reduce. Adding to this, Jadhav says, “There is enough sympathy toward individuals having ID but what we need is empathy so that they can get the room they deserve in the society to develop.”

Even as the onus for this lies on the society at large, according to Chandra, the government has the scale to create that impact. “The government can launch campaigns on the lines of Swachh Bharat to initiate dialogue in the society on special education and inclusion of individuals living with ID into mainstream life. According to reports, there is one person with ID among every 50 people. But where do we see them? Why are they confined to homes or special schools alone? The taboo or stigma attached to this has to be removed in order to begin the process of bringing about the change,” she adds.



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