What after us?

These are people bound by mutual love, respect, understanding, common circumstances, and a will to change things for their daughters, sons, brothers and sisters. Hope floats, against all odds, for the ‘Citizens for Inclusive Living’, an association of people who have come together with a collective consciousness and are working together tirelessly, primarily for dignified residential facilities for persons with mental disabilities in Chandigarh.

The primary aim of the association is to make Chandigarh more inclusive and caring for persons with mental disabilities and over the last three years, the association has grown to over 200 members (with a core committee of 20 members), comprising eminent psychiatrists, psychologists, special educators, social workers, parents and caregivers of persons with disabilities and also concerned citizens of Chandigarh.

Since March 2019, the members of ‘Citizens for Inclusive Living’, many of them who are parents above 60 years of age, have been requesting the Chandigarh Administration for assisted living facilities for persons with mental disabilities at the Indira Holiday Home and have made a detailed proposal for setting up of the Serenity Therapeutic Village at Indira Holiday Home, Sector 24, Chandigarh, an inclusive space for senior citizens and persons with mental disabilities on the five-acre campus, with no financial burden on the Chandigarh Administration.

More than 70 parents and caregivers have sent nearly 500 representations to the UT and Central government over the last three years, yet the wait for a practical solution continues to date. For many who continue to fight this battle, it is disheartening to experience a lack of empathy and accountability in this pressing cause considering the plight of several parents/siblings, the existing and settled laws of the land, especially Section 19 of The Mental Healthcare Act, 2017, and the relevant portions of The Mental Healthcare (Rights of Persons with Mental Illness) Rules, 2018.

Indira Holiday Home in Sector 24, Chandigarh . (Jasbir Malhi)

Neelu Sarin, Area Director, Special Olympics Bharat, Chandigarh chapter, is the president of ‘Citizens for Inclusive Living’ and she notes that even though many families are willing to pay for services, community living options for persons with mental disabilities in the city remain virtually non-existent. The project proposal of the Serenity Therapeutic Village has been finalised after taking inputs from over 300 people in India and abroad and the group has conducted over 20 public consultations with various stakeholders.

The project states that this will be an inclusive space for senior citizens and persons with mental disabilities who don’t need acute institutional care. Indira Holiday Home, says the project proposal, offers several unique advantages such as an open green campus, central location, and a large residential area.

The over four-acre space available is perfect for senior citizens and persons with mental disabilities to live comfortably without disturbing each other. The plan is to have separate sections for an old age home and assisted living facilities for persons with mental disabilities, without disturbing each other, but supporting each other wherever possible. The aim here to build and to have a symbiotic community, with the help and assistance of the residential support staff.

“Also, we are not asking for financial assistance, we have a corpus fund, with parents willing to pay for such a facility, and many citizens also coming forward to help with the cause. There has been no solution to our problem. How can the Chandigarh Administration keep ignoring our legitimate concerns for the last three years? Now that we are proposing a viable solution, the government needs to act on it. We have been waiting for many years now, and some parents have passed away in the last few years,” says Megha Sood, an educator, a single mother, and caregiver to her parents and sister, who is suffering from schizophrenia. Sood is a core committee member of Citizens for Inclusive Living and says that over the years all they have been offered are impractical solutions like the CHB flats, Cheshire Home, etc and they are all disheartened.

Parents, professionals and NRIs, says one member, have already pledged donations worth Rs 20 lakh for this project and more money will be easily raised once this project begins. Simi Waraich, a psychiatrist, who is an integral part of this demand for inclusive living, says that mental health crisis is one of the biggest challenges the world is facing and a group home will promote dignity and inclusion of persons with mental disabilities, so they can aspire, grow and live meaningful lives.

Persons with mental disabilities (mental illness and intellectual disabilities) comprise 3 to 5 per cent of the general population and for many parents, the suffering is growing with age and time, as they are grappling with their own ill-health, financial constraints, and social isolation. A senior citizen, cancer survivor and a single mother of an adult with a mental disability, a mother spends sleepless nights worrying about what will happen to her precious son once she is no more. “Given our old age and chronic health problems, you can imagine the stress that we are constantly living with,” she says.

A government employee based in Chandigarh has an elder brother, who is 54 years of age, unmarried with no source of income at present, and has been suffering from debilitating mental illness for the last several years.

“Being the sole caregiver, I completely empathise with the suffering and anguish of such persons and their family members. We are asking the government to envision it as a unique project under the UT Administration, to be planned and managed in partnership with the parents, mental health professionals, and professional organisations,” he says.

The general secretary of ‘Citizens for Inclusive Living’ laments the fact that meeting after meeting and countless verbal assurances have resulted in nothing.

“How do you expect us, parents, to believe the government officials anymore? Do you know how many parents have passed away in the last three years, hoping that group homes will be established soon? We don’t want ownership or management control of Indira Holiday Home. Rather we will help the UT Administration in every way possible to run the place efficiently. We are not asking for persons with mental disabilities to be kept in Indira Holiday Home indefinitely. We are only saying that please start the project, and a few years later when some other suitable place is available, the residents can be moved there. We request the Administration not to hand over the Indira Holiday Home to a politician or NGO.”

Another mother of a 38-year-old son who has been suffering from schizophrenia for the past 20 years and has a mental disability above 70 per cent says that she and her husband are suffering from many health issues now.

“It is very difficult for both of us to take care of ourselves in old age and our son at the same time. We are both retired, and our son is not in a position to work, so there are financial constraints. We live in a constant worry about the future of our son and we need a group home where there is a scope for interaction, vocational training, an opportunity for those with mental disabilities to lead a secure life.”

A 67-year-old, single mother of an adult woman suffering from mental illness, says that her daughter, who is 39 years old, has been suffering from schizophrenia broad-spectrum disorder for the past 16 years.

“My husband is no more and I am the only caregiver to my daughter. I am also a cancer survivor, living on medication. There are so many parents like me who require a good residential facility where their wards can stay when their parents are no more.”

Gurpreet Singh, a psychiatric social worker, who is also part of this initiative, says that the project is the need of the hour.

“The caregiver is mentally, physically, and emotionally tired, and I think, as a society, we need to step up and give support to both the caregiver and people with mental disability, who despite living in society, are alone, for they are not accepted in the mainstream. Inclusive living, with facilities like yoga, counselling, music, gardening, etc. will go a long way in making Chandigarh a city with a conscience,” says Singh.

Ambika Agnihotri, who is pursuing a Master’s in Psychology from Panjab University, and volunteers for the cause, says that social support is paramount for this section of society and people need to be made more aware of the needs of those with mental disabilities.

“They don’t need hospitalisation, but support, understanding, and a way to look ahead,” says Agnihotri.
It has been a long journey, to say the least, and the road has been fraught with many impediments and dead ends. Yet, there is no stopping, for the vision of a better tomorrow inspires the ‘Citizens for Inclusive Living’, to keep walking.