Ring of care

Parents form NGOs to support children with mental disabilities.

B Indira, a chartered accountant by profession, spends most of her non office hours at Sankalp. It is an association in Nagpur started by parents of children with mental retardation and related disabilities seven years ago. Indira's parents, who are the founding members, started it for her two siblings.

Indira's father is a consultant with Sankalp. He started the organisation with 10 other parents of children with mental and neurological disabilities. Today, Sankalp has grown into a 170-member association.

"The organisation looks at fund raising, issues pertaining to legal guardianship of orphaned disabled children and other activities," says Indira, while looking after a stall at Shilpotsav, a grand fair organised by the government in Delhi to exhibit the work done by disabled people.

Of the 800 organisations at the fair, over 200 are represented by people with mental disabilities. Some of them are parents' associations registered with National Trust.

Parents of disabled children, from across the country, have joined hands to form associations to answer the only question in their mind... "what happens to my child when I am no more."

"We sensitise parents and tell them that society will treat your children as you treat them," says Poonam Natarajan, chairperson, National Trust, adding that the trust, which has a corpus of Rs 100 crore, assists these associations.

Parents and guardians back these associations with their respective professions. "We try and generate awareness about Sankalp and its activities in our respective professions. Funds come from individuals as well as from the government but we want other organisations also to come forward for help," says Indira.

A parents' association typically has a respite centre and conducts workshops where disabled people are taught handicraft and other skills. Children who have a certain level of IQ and can grasp are sent to school, they attend these workshops on weekends or during vacations.

Parivar, an apex body of parents' associations, has around 150 members of which Sankalp is one.

Parivar mainly looks into the issue of legal guardianship, a process wherein a parent applies to a "local committee" to safeguard legal rights of the disabled child once he/she is 18 years old.

"A legal guardian may or may not be the biological parent but he has to be someone who the parents nominate," says JP Gadkari, president of Parivar.

He says, "Parents in India are yet to understand the importance of legal guardianship. Without it the legal rights of the child may not be safe."

Adhar, a parents' body in Thane, has a lifetime care programme for disabled children. It has 186 children staying in its respite centre.

"We have children who have grown up in the Adhar respite centre, it is wonderful to see how they accept the newcomers. This affection is God-gifted. No one teaches them to love, they are naturally good-hearted," says PS Kulkarni, manager, Adhar.

www.nationaltrust.org.in