If we have a collective responsibility to protect our children, we have an even bigger responsibility to speak out for our disabled children. People with disabilities remain one of the largest overlooked minorities in the world. According to Unicef approximately 15 percent of the world’s population, live with some form of disability and this includes around 93 million children. Children with disabilities are further marginalized and experience discrimination and widespread violations of their rights on a daily basis; often this is not just a result of their inherent impairments but because of barriers within society. In India this is compounded by poverty, lack of services and support, inadequate policy and legislation and a general hostile and apathetic environment.
It is against this backdrop that Leher profiles 5 organizations that work passionately & creatively to enrich the quality of life for children with disability. Organizations that work to ensure that their abilities are not overlooked and their capacities underestimated; that they get the education, technology support and health care they need and they are not excluded from activities in their community; Organizations that are slowly bringing in the concept of childhood in the children-disability-rights discourse.
Helen Keller Institute’s thrust is towards the community’s acceptance as a joint partnership responsibility with the child’s family and educators. The Institute has helped educate numerous Deaf and Deafblind children, since its inception in July 1977. The institute is now recognized nationally and internationally and is aided by the Ministry of Social Justice & Empowerment, New Delhi and Women, Child and Handicapped Development Office, Maharashtra. It has two separate schools – one for deaf, another for Deafblind children, and a special residential unit for Deafblind children residing outside Mumbai.
Sheela Sinha, Director, Education
“The first thing that the government can do to show its seriousness about disabled people is to pass the Rights of Persons with Disabilities Bill which has been pending for the last two years. Instead of seven disabilities specified in the old outdated Act, the Bill covers 19 conditions. Persons with at least 40% of a disability are entitled to certain benefits such as reservations in education and employment, preference in government schemes, etc. The Bill also confers several rights and entitlements to disabled persons. These include disabled friendly access to all public buildings, hospitals, modes of transport, polling stations, amongst others. The indifference among policy makers is such that the Bill has not even been tabled in the Parliament, then we can advocate for its proper implementation. Helen Keller Institute for the Deaf and Deafblind, is Asia’s first and Mumbai’s only such school. We were the pioneers in the field of multi-disability. We started a unique early intervention system that can identify a disability even in a month-old child. But the situation as it is today is not enabling, often we see children dropping out of our school because parents find it difficult to bring children to school once they become 5-6 years of age and mothers find it difficult to carry them, the public transport is not disabled-friendly and there is no support from the government. Helen Keller Institute will continue to provide care to children with multi-disability and struggle for enactment and implementation of the new Disabilities Bill.”
To transform the way families and professionals are able to diagnose, and care for developmentally disabled children, Ummeed is a comprehensive, service-provider model that empowers families to care for their children with fewer resources and a diminished reliance on expensive doctors and therapists.
Ummeed is a landmark center where early and accurate diagnosis of development disabilities is followed by in-house professional medical and therapeutic care. Training and education programs for parents help continue proper care and therapy at home. In a medical system that rarely works in a cooperative and coordinated manner to provide the best care for patients, Ummeed provides medical and therapeutic professionals with the opportunity to work in tandem, as resident physicians, building relationships and empowering parents of children with disabilities. Ummeed’s flagship program, the Child Development Aide imparts skills to community workers that help them promote good child development practices, identify children with disabilities and teach their families simple interventions.
Dr Anjali Joshi, Director, Training
“India has 35 million estimated number of differently abled children and a very few trained therapists to provide services to them. Moreover, treatment or therapy for such children is often not covered by any insurance company. This is a big deterrent for parents who cannot afford privately owned therapy services. Therefore, we at Ummeed child development center, which is a not for profit organization are working at addressing these challenges at multiple levels.
1. To build a cadre of community workers who can offer some support to those who have access to none.
2. To train parents of children with special needs get better equipped to handle their child.
3. To support therapists across India and developing nations through advanced training programs.
The first two levels of trainings are carried out so that families of children with special needs have an access to pool of para-professionals and caregivers for early detection and intervention.”
Barrier Break is working with Microsoft to create a curriculum for the print-impaired to learn Windows operational system and train the staff who work with print-impaired children. They work with libraries, such as the Central Public Library in Mumbai, to make them accessible. Assistive technology like magnifiers and adapting search systems help make the process compatible with screen reading software. This helps ensure the tools for education are inclusive. Barrier Break also creates models for accessibility for people with different disabilities across sectors. For example, inclusiveness into e-space is a big endeavor that helps convert websites of organizations like All India Confederation of the Blind into accessible formats. Similarly, they have launched an online service for the visually and hearing impaired people called “Sign & Talk,” where a person can sign their message to a professional sign language translator through a webcam who will then call the required number and facilitate communication. This service provides impaired people with opportunities such as ordering food and participating in business discussions. Barrier Break is also converting animation films into disabled-friendly formats with voiceovers and translation so all children can view these and partake in their peer group’s pop culture.
Shilpi Kapoor, Founder
“Today, we are accessing more services digitally than we are in person. The push for the Digital India Campaign actually supports that stance.Even the Accessible India campaign talk of Accessible ICT & transportation, but we are missing these areas in the Accessibility Index. We need to look at Inclusion holistically. As a corporate, I might hire 10 or 1000 or even 10,000 disabled people, but your own website, mobile app, customer service is not accessible, would that be a fair look at the organization. If the disabled customer is struggling to make a payment using your website or mobile app, is that acceptable?
Let’s together build an Accessible India and include technology which can be an enabler and can empower people with disabilities to be independent in this journey.”
Able Disabled All People Together (ADAPT) – ADAPT (formerly The Spastics Society of India), was founded by Dr. Mithu Alur in 1972. It was the first special school in India for children with cerebral palsy.At a time when little was known about developmental implications, Dr. Alur set up the first model to offer treatment and education under one roof. Their services include assessment, infant stimulation, therapy, counseling, inclusive education, skills training and job placement, continuum of support services and home management programmes for children and young adults with disability. An open and vigorous society inspired by the idea that equal opportunity should translate into reality for all its citizens.ADAPT works to ensure that children have equal access to education, whether they are disadvantaged through disability, poverty or gender. ADAPT also interacts with national and international organizations in the public and private sectors along with government agencies to influence policy changes that impact marginalized groups across the country.
Mithu Alur, Founder Chairperson
“We are proud to say that we have been successful in creating a civil society movement for the disability rights in India. We were the first ones to professionalise care for disabled people in the country which till that point was understood as voluntary and not very well-planned. Nearly 60-70 million people living with disabilities are out of any kind of social security net, what I call being in the wilderness. The government needs to do a lot and fast. For us, one the main goals is to ensure that disability is included in the corporate social responsibility framework, which is not the case yet and it is an acceptable situation for us. Our model of professional care and education is scalable, I hope the government will take the necessary steps to ensure that disabled people are also seen to be having equal rights to access, life, education, health and employment.”
Kili-Kili is an organization that is creating disabled-friendly parks across the country by strategically utilizing existing allocated funds in the government to create ingenious and cost-effective equipment which enables children of all abilities to socially interact, explore the world and reap developmental benefits such as gross and fine motor skills through play. Creating inclusive play spaces for children of all abilities, Kilikili’s purpose is an instrumental step in creating an inclusive society that does not discriminate or exclude on the basis of ability. Kilkili uses innovative approaches such as auditory equipment for blind children to play with; the Elephant Slide with bells alongside the steps that indicate each step being climbed; and wall murals, made of alphabets and numbers in English and Braille to inculcate language development alongside inclusive play. Killkili has made three public spaces in Bangalore, one in Mangalore and one in Mumbai completely inclusive for children of all abilities. Highlights include a specially-designed swing that is safe to ride for children with developmental delay.
Kavita Krishnamoorthy, Founder
“The idea behind modifying public parks to make them friendly towards children with disabilities is very simple. When you modify play equipment, not only do you create a safe space for children with disabilities you also enhance the fun element for non-disabled children. So, in a sense it is a win-win situation for everybody. The most important thing to remember is that these are the few places where disabled and non-disabled children can mingle, interact with each other. It gives children with disabilities an opportunity to make friends. How many friends do we have who are disabled? Very few in my experience. So, we want the government, municipal corporations, builder associations and resident associations to make their parks and public spaces disabled friendly, this enhances the quality of life for everybody, ramps for wheelchairs can be used for prams also. We want everybody to become sensitive about it and start implementing this in their neighbourhoods and parks.”