Option-less parents of mentally-challenged children opening cure homes themselves
What's the story
Every parent worries about their children's future despite their financial disposition, so they will their properties and arrange for their children's financial comfort.
But for mentally-ill children, the concern increases manifolds, which further gets aggravated since India isn't exactly a haven for them.
Considering this, parents in Pune, Mumbai and Bengaluru are taking it upon themselves to ensure a safe future for their children.
Maharashtra
Badlapur home has 50 specially-abled people enjoying themselves
In Badlapur, 53kms from Mumbai, there's a 1.5-acre facility run by NGO Sangopita (meaning 'to nurture' in Sanskrit), which was started in 2003 by Ravindra and Sujata Sugwekar, parents to 22-year-old cerebral palsy-afflicted Akshay.
They house 50 specially-abled people, aged 8-45.
A little closer to Mumbai is Adhar, founded in 1999. The home now has 220 people and its Nashik branch has another 100.
Karnataka
Savli, a Pune home, was started by ex-mechanical engineer
150kms away from Mumbai, in Pune, an 81-year-old ex-mechanical engineer Vasant Thakar took matters into his hands in 1992, after doctors termed his cerebral palsy-affected daughter as 'untrainable'.
Subsequently, he established two homes under a trust called Savli, Marathi for 'shelter'.
In Bengaluru, former political science professor Ruby Singh started a daycare center named ALFAA in 2012, to "secure her autistic son's future."
Information
Kerala couple has donated their entire property for state-run homes
In Kerala, retired teachers N Kamalasanan, 76, and CK Sarojini, 72, are desperate for their 36-year-old daughter Priya's future, as she suffers from motor-neuron disease. They've donated properties worth Rs. 8cr to the state-government solely for building subsidized care-homes, where Priya would also be accommodated.
Activities
Inmates taught to communicate, swim, make paper-bags, candles
All these homes have caretakers and special educators; Sangopita has 32 staff members, while ALFAA has 14.
Sangopita also has psychiatrists, physiotherapists and doctors, who visit periodically and provide their services voluntarily.
These caretakers engage the inmates in activities like making paper-bags, candles and handkerchiefs. They're also trained to communicate and swim.
At ALFAA, they have poetry and chocolate-making classes too.
Challenges
Most of the homes face problems regarding financial funding
Running a home like this in a country like India is no rare feat. Among the major challenges, finance tops the list.
Sangopita was started solely on donations. A local industrialist also helped them, said Sujata.
Thakar was helped by a diamond merchant, who took pity on his struggles.
Monthly rents charged between Rs. 8,000-15,000 and donations supplement their income.
NGO says
'Parents aren't shirking their responsibility, making wards' lives easier'
Another big challenge managers face is parents' guilt of handing over their children to the centre.
For this, both Adhar and Sangopita conduct parent-child counseling sessions.
"Half of our job is explaining distraught parents that they aren't shirking their responsibility," says Gore.
This was echoed by Sucheta, who still feels guilty about not being the primary caregiver of her son, who lives in Sangopita.
Solutions
Government should intervene, focus on cure rather than rehabilitation: Experts
Experts lauded parents coming up like this, given that only a few state-run facilities are available for 15L mentally-challenged adults.
However, "this kind of semi-formal or formal model needs to adhere to some minimum standards" to be "set by the government," said NIMHANS director Dr Nimesh Desai.
Dr Ramkumar GS, former NIMHANS psychiatrist, added the government should focus on cure rather than rehabilitation.