THE KIDS ARE ALL RIGHT
What happens to my child after I’m gone? In the absence of an answer for parents of children with special needs, some are setting up facilities of their own
It can hurt when your child says he doesn’t want to come home. It can also mean he’s comfortable where he is. When the child is 22 and has severe autism, you don’t know what to feel, says Sucheta Desai. Relief? Guilt? Satisfaction that you were right?
When Pratik, Sucheta’s son, reached puberty, the usually quiet child started showing signs of aggression. “He would throw temper tantrums and get violent if his father and I tried to rein him in,” says the 46-year-old Mumbai homemaker. “As he grew bigger and stronger, managing this became harder.”
In 2010, she heard about a home run by an NGO called Sangopita on the fringes of Mumbai. The 1.5-acre facility has gardens, yoga rooms, colourful dormitories and an airy, sunlit daycare centre for children. It is home to 50 specially abled people, aged 8 to 45, and was set up and is run by the parents of a young man with cerebral palsy.
“Pratik loves it here,” Sucheta says. “I miss having him around, but I visit him every alternate day, and now I am reassured that he will still have a home once I am gone.”
Sangopita means ‘to nurture’ in Sanskrit. The space was set up in 2003 by Ravindra and Sujata Sugwekar, parents to Akshay, 22, who has cerebral palsy. As time went by, Sujata says, “the constant fear of what would happen to Akshay once we were gone kept eating into us.” So she and her husband Ravindra, 62, a bank executive, decided to act.
It took almost two years to scrape together the money to set up the facility. “I was unabashed. I decided I would do whatever it took to find donors, so I would board local trains and hand out flyers, ask strangers to pitch in,” Sujata, 55, says. “A local industrialist came to our aid and helped us find donors too.”
Today, Sangopita employs a staff of 32, including caretakers and special educators. “We also have psychiatrists, speech therapists, physiotherapists and yoga teachers who visit periodically,” Sujata says. Residents are divided into groups based on their IQ and ability levels and offered training in communication, and in handicrafts like paper bag, candle and handkerchief making. The charitable trust also has a seven-member board that includes doctors and parents, and oversees the running of the institution.
With just a handful state-run long-term care facilities available for a population of 15 lakh mentally challenged adults, parents are getting together across the country to make their own arrangements.
In Greater Mumbai, the 5-acre Adhar facility was set up in 1994 by a trust made up of parents; it now houses 220 people aged 18 to 75, and has a second facility in Nashik district that houses another 100. In Bengaluru, Ruby Singh, the mother of an autistic man, runs a daycare centre called ALFAA where she cares for 22 specially abled people aged 14 to 29, with the help of 14 special educators and caretakers. In five years, Ruby hopes to have a residential facility up and running too.
In Pune, two homes managed by an 81-year-old parent and retired engineer house 50 people.
In Kerala, two retired teachers have donated all their inherited property — worth a total of ₹8 crore — to the state government, on condition that the land be used for governmentrun, subsidised care homes, and that their daughter be accommodated in one of them.
“The ‘what after us?’ question is a legitimate and widespread concern that parents approach us with,” says Dr Nimesh Desai, director of the Institute of Human Behaviour and Allied Sciences (IHBAS), Delhi. “It is a welcome step for parents’ associations to start homes for special kids, but the shift to this kind of semi-formal or formal model needs to adhere to some minimum standards and those must be set by the government.”
Government intervention would mean that conditions, levels of care and even pricing could be monitored and subsidised. Currently, the homes charge between ₹8,000 and ₹15,000 a month, limiting access to very few. And running the homes is a challenge for parents whose primary qualification for the job is that they’re the only ones willing to do it.
BIRTHING PANGS
“I’ve made several mistakes,” says Ruby, 53, a former political science lecturer who runs a daycare centre in Bengaluru, “but I am no corporate honcho trying to expand my business. I am an anxious mother trying her best to secure her son’s future. This home will be like life insurance for him.”
Ruby’s son Anujeet, 23, is severely autistic. When he was four, she had a second child, and for years this brought her relief, because “he could take care of his brother after we were gone”.
But, she says, she realised this approach could be unfair and unsustainable. “It was my responsibility to secure his future, so I started connecting with like-minded parents of special kids.”
In 2010, she set up a trust called Assisted Living For Autistic Adults and by 2012, had opened the ALFAA centre.
“It is everything I wanted for my son,” she says. “We take the kids swimming, organise pottery and chocolate-making classes. We did a photo shoot and had them walk the ramp at a fashion show organised by a famous designer.”
With help from family and friends, she has also bought 2.25 acres on the fringes of Bengaluru for a residential campus. “I have learnt that you
need to get all the parameters of infrastructure, human resources, finance and parental support right, from the start,” Ruby says. “You need to have support in all four sectors to execute this big a plan.”
A succession plan is crucial too. She hopes to pass the baton to special educators Kashmir Singh and Devinder Singh, who have worked with ALFAA since the start. “We are also planning to set up a board of trustees, of which 75% of the members will be siblings of special children,” she says.
The problem today is that government policies veer towards the ‘cure’ model rather than rehabilitation, says Dr Ramkumar GS, a psychiatrist formerly associated with National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore. “This is why social ventures like residential homes for intellectually challenged people don’t get the public attention or funding that they should get.”
In Pune, 81-year-old retired mechanical engineer Vasant Thakar decided to take matters into his own hands when his daughter Vaidehi, 48, who is mentally challenged and has cerebral palsy, was written off by renowned doctors as ‘untrainable’ in 1992.
Thakar opted for premature retirement at 55, converted his three-storey bungalow into a daycare centre for special children and formed a trust called Savali, Marathi for ‘shelter’.
Two years later, responding to demand, he turned a 5,000 sq ft plot he owned on the outskirts of Pune into a residential facility for mentally challenged adults and turned the daycare centre into a residential home as well. “I got help from a diamond merchant who saw how hard I was struggling to get the projects started,” he says.
The Savali homes now house 50 people cared for by a staff of 35. “My daughter was my sole concern in the beginning, but now I have people as old as 67 living a better life here,” Thakar says. “And I know Vaidehi has friends and is happier than she would have been anywhere else.”
SPREADING THE WORD
“Parents are usually the most experienced when it comes to handling their special children, but social ventures also need a strong medical and scientific backing to ensure that the wards get the right kind of care and education. These homes need to go beyond arbitrary goodwill and work on a planned model with clear guidelines,” says developmental paediatrician Samir Dalwai.
A beginning of sorts seems to have been made in Kerala, where retired school teachers N Kamalasanan, 76, and CK Sarojini, 72, desperate to provide for their mentally challenged daughter, decided to donate all their property to the state government for use as long-term care homes.
Priya, 36, was born with mental retardation, a motor neuron disease, and a malformed right hand. When she hit puberty, she became anxious and sometimes violent. “Her condition is manageable with drugs,” says Kamalasanan.
“She can do small tasks like arranging flowers, bring in the newspaper from the gate. But she needs help for her personal needs, and to ensure she takes her medica- tion on time.”
Two years ago, the couple donated Kamalasanan’s ancestral land and house in Kollam district, worth ₹3 crore, to the state government. Sarojini has inherited two houses on a plot worth ₹5 crore in Kozhikode and that plot will be willed to the state too, she says.
Today, they describe themselves as relieved. The Kerala social welfare department has taken possession of the first plot and announced a plan to build a care complex for women battling mental illness.
“Many care homes and NGOS came forward to help set up homes on our land but we felt the government was our best bet,” Kamalasanan says. “I am relieved the state accepted our condition. I feel my daughter is in safe hands and now I can die in peace.”
It helps that the couple has connections — Sarojini is the daughter of former state secretary of the CPI(M), CH Kanaran. When they wrote to current CPI(M) chief minister Pinarayi Vijayan in 2016, the government responded — even though it did take two years to get to the announcement stage.
They will likely see the care home built in their daughter’s name; experience how its residential and day-care facilities help others.
“In our country, the mentally challenged face a bleak future,” Kamalasanan says. “Since there is no help available, many families push them out on to the streets. We need better care. The homes built on our family land will be a message of hope for those in need of such help.”
RUNNING THE SHOW
Finding long-term care is one concern; finding a way to pay for it is another. At Adhar and Savali, donations help run the facilities; money from the sale of products made by the residents also helps.
“We were lucky to have psychiatrists and physiotherapists who volunteered to help us out for free because of the doctors on our board of trustees. Otherwise, it would have really added to our costs,” says Sujata of Sangopita.
Another battle, those running the homes say, is dealing with the parents’ guilt at leaving their child there while they are still alive.
Sangopita has parent-child counselling sessions once a month in an attempt to address this. “Half of our job is explaining to distraught parents that they are not shirking their responsibility, just making it easier for their ward,” says Vishwas Gore, 57, a chartered accountant who has been running Adhar, which was set up by his father, since 1999. “Only when the residents tell their parents that they don’t want to go home do they realise that they are finally finding acceptance and happiness among their own.”
Pratik’s mother Sucheta, for instance, is still adapting to a life where she is not his primary carer.
A few months after he moved to Sangopita, she and her husband, a businessman, bought a flat close by. “My husband visits on a weekly basis,” she says, “but I live here because I need Pratik to know that we haven’t given up on him.”
INDIA HAS ONLY A HANDFUL OF STATERUN HOMES AVAILABLE FOR AN ESTIMATED 15 LAKH MENTALLY CHALLENGED PEOPLE, ACCORDING TO THE 2011 CENSUS