CHENNAI: In India, a country that ranks number 2 in population density, about 2.2 per cent out of the not-so-contained pie live with disabilities. Of the bag of challenges that those from this lot face daily difficulties in accessing and using public buildings and transports, availing welfare schemes, lack of policy solutions, among other crisis-inducing gaps the lack of a systematic and robust care system for Persons with Disabilities (PwD), after the passing of their parents or caretakers has been disproportionately affecting families.
As the ‘What happens to our children after us’ question continues to plague the minds of ‘special’ parents, a city-based support group for families of children with special needs, the Special Child Assistance Network (SCAN), has come up with an answer to enable them in continuing to rock the cradle, even after their years.
Include and integrate
In a first, the 600-odd member group has proposed and flagged an inclusive living initiative that hopes to avoid institutionalisation, ghettoisation and instead, integrates PwD and their families with the rest of the society. “In the event of the death of the parent(s) or lack of other people to care, persons with disabilities have traditionally been institutionalised, bringing down their quality of living. Another segment is of group seclusion, wherein the families of children with special needs move away from the main city and develop exclusive residential facilities for ‘better living’.
In many ways, they are not entirely inclusive. Isn’t a model inclusive and equal only when it is interwoven in the mainstream society, wherein everyone can live, work and play just like everyone else? It was this thought that led to the shaping of SCAN’S Inclusive Living initiative,” shares Gopinath Ramakrishnan, managing trustee, SCAN. The initiative aims to cultivate an inclusive residential community with special facilities for PwD and their families, in which PwD can live on equal terms along with other members of the society. They can choose to live independently or with their families and integrate with the larger community within the same space, with various support systems made available within the community.
“This will not only help them lead a safe, meaningful and purposeful life but also make them independent,” says Gopinath. SCAN has joined hands with Vidya Sagar, an organisation that has been working closely with PwD for over three decades and has been exploring the sites of few well-known property developers in the city. “If the idea is to integrate with the larger society then, the most logical idea was to look at residential complexes that were coming up in the city.
With many already providing a host of facilities from swimming pools to gymnasiums we decided to consider moving into these spaces but in a broader capacity, as groups. This will not only give the child/adult with disabilities a conducive set-up to develop in but also lead a life and lifestyle that they’ve been used to,” he shares.
The group homes, a feature of the initiative, will be a space where a small number of unrelated people can live together. “In some homes, the residents themselves are a support for each other while in others, they may need caregivers. Group homes will be available in different apartment sizes. These homes will be primarily for PwD and the caregivers, though anyone needing additional support and care would be allowed,” he explains.
Project approach
Further, detailing the project approach, Gopinath emphasises that the idea is to assimilate in the mainstream community, where access to means of education, livelihood and recreation are not farfetched. “We were mindful that the community should be within commuting distance of schools, colleges , recreation a land entertainment spaces and markets. The idea is to not deprive them of their wishes or to limit their choices in an attempt to provide them with special requirements. Everything from access to public transport, different ranges in apartment sizes and pricing have been mindfully thought through.
We have also carefully decided to spread through the complex, instead of moving into one block which constitutes just the families of PwD,” he says, adding that property developers have been keen and sensitive to the requirements. With the projects being considered in the process of being constructed, possibilities for design changes to enhance accessibility are being discussed too, he adds.
From wheelchair accessibility including wide doors and spacious toilets, besides the ramp to mindful infrastructural planning (placement of switch panels, kitchen counters), efforts, he says, are being taken to provide a holistic approach to inclusion. Once the property is finalised and families select apartments of their choice, an adequate number of apartments will be earmarked for group homes, and service providers will be engaged for the special services.
“The community will be managed by a resident manager with a management committee to provide support and to be part of the decision-making process. Managers and caregivers for the community have been identified and Vidya Sagar has been lending support and their expertise by training them. Since this is a ‘beyond our individual lives’ project, it is important to integrate the community with an effective mechanism with different participants to enable it to sustain itself over time,” he shares. A Caregivers Cell, managed by Vidya Sagar, will be set up to deploy appropriate support to the care-seekers.
Employment opportunities
The initiative, as part of its vocational training offerings, will train the PwD, helping them land in a job of their choice or specific to their capacities. “Another advantage of moving into a complex is that there is scope for job generation. From managing various facilities, delivering groceries, food, medicine, providing typing and/or photocopying services, washing vehicles, running the retail section of a grocery shop, several doors will open and adequate training will help us access and thrive in them,” he elaborates. Poonam Natarajan, founder of Vidya Sagar, who has been at the forefront of creating an inclusive space for the community notes that the initiative is, perhaps, first-of-its-kind.
“The inclusive living concept developed by SCAN is an excellent and very doable model. It will manage to create a supportive community for adults with disabilities, without developing an exclusive facility. I believe that this inclusive model is the first of its kind in the country,” says Poonam, one of the pioneers of developmental activities for PwD in India. Partnering with SCAN to provide support for caregivers and group home managers, she adds, “For a long time, we have wanted to create adequate support in the mainstream society, and I feel SCAN’s project will achieve that.” SCAN’s initiative has also grabbed the attention of the government and once the project is rolled out, the idea, Gopinath notes, could potentially be explored as a model for government housing projects.
“Albeit not official, dialogues have opened around it. The initiative is receiving attention and we hope that more projects like these take shape. To move away from institutionalisation, into smaller group homes and inclusive living spaces with a support structure amid the mainstream society, is what can involve PwD in decision-making, enable them into becoming independent and assure parents of a good future for their children.”
In the complex
The support systems will include an infrastructure designed for access by persons with disabilities, facilities such as group homes for assisted or co-dependent living, kitchen and dining facility, therapy centres, caregivers and vocational training centres.
For details, visit Facebook page SCAN – Special Child Assistance Network or write to contact@scanfamily.org