Growing Need for Inclusive Community Village for Mentally Disabled Persons in Chandigarh

Harpreet Singh, a topper throughout, was diagnosed as a patient of schizophrenia in the final year of his graduation course in a top engineering college in Chandigarh. His parents could not fathom the reason for the sudden occurrence of his mental illness. “We don’t know what affected him so deeply. There were factors which bothered him during that vulnerable period, for instance his not making to the IIT entrance exam, being bullied  in college, racist remarks passed  by an insensitive professor about a Jat Sikh boy doing  well in studies or constant vicious  outpourings of my suspicious husband against her,” said his mother, Satwinder Kaur.

Kaur said her son, who is now 38 years old, refuses to live in the present. “He lives in the good old days of his past when he was doing well in studies and quiz. He keeps asking me questions on general knowledge. I feel worried about him.”

Though bouts of extreme aggression in the initial phases have disappeared after long treatment, Harpreet’s ageing parents are worried about his well-being and care after they are too old or no more.

There is another case of Deepa Bhatnagar, whose in-laws asked her parents to take her away on account of her erratic behaviour and severe aggression. The aging parents brought her home and consulted doctors who diagnosed her schizophrenic.  Not able to withstand her violent outbursts, the parents were admitted to an old age home by Deepa’s sister, Vrinda, who is herself financially and emotionally struggling as a single mother with a growing up daughter.

Now Deepa is admitted in a temporary abode or half-way home for mentally ill persons and shuttles between home and hospital. As per policy, a patient has to be rehabilitated somewhere else after a six-month stay in a half-way home. But Vrinda is unable to find her ailing sister a permanent home

“My sister is well educated with a Master’s in Arts and Bachelor’s degree in Education. It is just that she suffers from relapse by being careless with medication. So, I need a home where she can get medical help whenever required besides a congenial atmosphere,” said Deepa’s sister..

Like Satwinder Kaur and Vrinda Bhatnagar, many family members have approached the Chandigarh administration to allot a portion of the sprawling four-acre green campus of Indira Holiday Home (IHH) in Sector 24 for mentally disabled people.

Neelu Sarin, area director, Special Olympics, said: “Following the United Nations Convention for Rights of Persons with Disabilities (UNCRPD in 2007), India formulated the new Rights of Persons with Disabilities Act (2016) and the Mental Healthcare Act (2017). For the first time, these Acts enshrined several fundamental rights for persons with disabilities. One of the most important one is the right to live in a community.  The two Acts make it clear that it is the duty of the appropriate government to ensure the fulfilment of these rights through regular supervision, medication and socio-occupational rehabilitation which will help them live as productive members in society.”

D R Paul, another such parent said: “I met the advisor to the Governor Manoj Parida on this matter. He told me that the administration is planning lot of things on this land, including opening an old age home. I wrote some 20 mails to the Governor who is also chairperson of the body managing IHH on this matter but nothing happened.”

When contacted, Parida, told NewsClick: “There are twin facilities of Cheshire Home and Hospital for mentally ill people, which can accommodate around 60 patients and meets the requirement of the city.”

However, Sandeep Grover, a psychiatrist at Post Graduate Institute of Medical Education & Research (PGI) presented a different picture of the matter. He said: “PGI receives around 15,000 new cases of mentally ill persons every year, of which 30% belong to Chandigarh. The city lacks adequate space for rehabilitation and recreational of these people” adding that “once such centre has been set up, many more people who are not resourceful, will come out, so the number will further spiral. Therefore this new facility will give respite to over-burdened parents and patients”

Commenting on the ample space available and the administration’s intent to use IHH as an old age home, Aditya Vikram, a mental health advocate, told NewsClick: “The vacant space available at IHH (over four acre) is large enough to plan separate sections for an old age home and assisted living for persons with mental disabilities.  Old people crave company; some of them may also want to mentor the relatively younger persons with mental disabilities.”

Vikram further said: “There is a significant overlap in the care and support facilities required for old people and persons with mental disabilities, such as social workers, counsellors and nurses, in addition to the housekeeping support staff. Hence, facilities like vocational training and recreation should also be incorporated in the package.”

Advocating a community atmosphere for tackling mental health challenges, Kamal Mahi, a certified counsellor and mindfulness meditation teacher, explained how the concept of Social Uplifting Productive Work, popular in countries like Holland, France and Germany, can be adopted for extending  social care to mentally disabled in Chandigarh.

“Under this concept, children and students are encouraged to devote some time to assist the vulnerable sections, like old people, mental and physically handicapped people, as part of their curriculum, for which they also score marks/grades. Under the IHH project, this approach can be followed,” she added.

Mahi said after prioritising persons with mental disabilities (mental illness and intellectual disabilities), the most marginalised, such as persons with other physical disabilities, shall also be considered for community living in the premises.

Simmi Waraich, another psychiatrist and member of the core-committee pursuing the IHH matter, flayed suggestions by some administrative officials to provide for a new building in the outskirt villages for the rehabilitation of mentally challenged people. 

“The concept of community living is empowering but dumping mentally disabled persons in far-flung villages, showing contempt for them, will further deepen the damage. They need and deserve a dignified and decent way of living,” she said.

Vikram is of the view that IHH can become functional immediately, while creating a new building may take even 10 years, with lengthy procedures involved in getting various sanctions.

On the issue of management of the project, he said, “The project will be planned and managed jointly by the Social Welfare Department of the UT Administration, the parents, mental health professionals and professional organisations. The exact role and responsibilities will need to be carefully worked out after in-principle agreement to the broad project proposal.”

However, raising funds is a big concern. “The project has been conceptualised as self-funded. Persons using the facilities will pay monthly charges (user charges on no-profit basis). There will also be a corpus fund and donations from individuals, NRIs and corporate social responsibility funding. Need-based concessions will be given to residents. Additional revenue will be generated from the products made and services offered to the public, “  Vikram added.

(Names of some of patients and their caregivers have been changed at their request)

The writer is an independent journalist based in Chandigarh who writes on environmental, social and gender issues.