“My dad is nearing 70 and my mother is in her sixties. If not for me, I wonder who will look after him,” a worried Sivakumar says, introducing his younger brother Ramkumar, a mentally challenged adolescent. What worries him more is if his future wife would consent to sharing caretaking responsibilities. Sivakumar’s anxiety is the biggest fear that haunts parents and siblings of special children identified with mental retardation, autism, cerebral palsy and Down’s Syndrome. “What will happen to my child after my lifetime?” is the question for which their parents continue to seek answers. While the number of special schools providing therapy, education and vocational training for MR children has increased, they do not retain students above the age of 25.
No light at end of tunnel
With no government provisions for permanent care of adults with mental disabilities, the ‘Sirakugal’, Special Children Parents Association of Tiruchi, had resolved to establish a centre where children would be cared for when the parents grew old or infirm. The association has appealed for land to construct a centre to three successive district collectors. After three years of repeated petitioning to the government, district administration and philanthropic organisations, nothing has materialised, says P. Sundaram, president of the association formed in 2008. Promises of assistance by various organisations from 2009- 2012 has raised hopes of light at the end of the tunnel, which were only to be doused later.
While persons with mild and sometimes moderate retardation can be trained and enrolled in income generation activities, those with severe or profound retardation are entirely dependent on parents. “If children with mild MR can just get along, imagine the plight of children with cerebral palsy, autism and Down’s Syndrome,” says a parent. “With parents in the association ageing, worries over the future of these children are growing.” The situation is compounded for single parents, which is the case with more than 40 per cent of the members.
Government participation in welfare of mentally challenged adults is still in the nascent stage. MR adults can avail benefits like free bus passes and lifelong monthly assistance of Rs.1,000, benefits open to all differently abled.
“Physically handicapped and blind are employed today. But can those with disorders like autism be empowered to live independently?,” wonders mother of Deepak, an autistic child. Without the support of the State, they may become a social burden and left destitute, believe parents. The centre if established, would be run by volunteers from the parent’s association as they are competent to look after persons with special needs, says Mr. Sundaram.
