TOI: Parents of the disabled: January 17, 2011

When were gone… Rema Nagarajan
For most parents of the disabled,its not life that is a burden.Its death.With Indias policies and infrastructure inadequate,there is reason for the furrowed brow

Last year,the headlines screamed of deaths in Asha Kiran,a government-run home for mentally challenged persons.Most of the deaths,it was reported,were due to neglect.As the death count climbed to touch 26,the hearts of thousands of parents across the country with intellectually and developmentally challenged children sank.The plight of these lonely people who died in the home uncared for filled their hearts with dread about the fate of their own children after they are gone.

In response to this question that haunts all parents of children with mental disabilities What will happen to my child when I am no more the National Trust Act was enacted in 1999.A decade later the scene is still pretty bleak.

Shabnam Aggarwal,who has worked with the mentally challenged for decades,says that most enquiries to the helpline are from people seeking homes to put their children in.Most often,its due to a real lack of options and information about available options, she says.There are hardly any support services such as therapy,vocational training or day care for mentally challenged children.Its exhausting for parents who cannot take a break even for a few hours when support services are not available, explains Shabnam.

Poonam Natrajan,chairperson of the Trust,rues the dearth of NGOs willing to work with mentally challenged adults as everyone wants to work with children.The lack of awareness among families of people with mental disabilities is also a hurdle to them demanding access to various services, she says.

Lack of financial resources and consequently human resources seems the biggest challenge for the sector.Most people who work in the sector leave for better paying jobs, says Shanti Aulakh who runs Muskaan,an organisation for mentally challenged adults.

Incidentally,the National Trusts initial corpus of Rs 100 crore has never been enhanced since.The Trust was to run programmes from the interest earned on the corpus.About half the interest is spent on administrative costs of the Trust and the rest of it does not even get fully utilised.Hence the ministry refuses to enhance the amount.It shows a lack of efficiency to return money unutilised when the demand is so huge, says J P Gadkari,president of Parivaar,a federation of associations of parents with mentally challenged children.Gadkari explains that he has no faith in government run homes.Parent-run homes seem to work better, he adds.He,along with a few other parents with similar concerns,has built such homes in Bangalore.We chose not to take the Rs 20 lakh the Trust gives because then the property belongs to the Trust.Theres also a scheme by which the Trust pays a home Rs 8 lakh for a below poverty line person.The persons needs are looked after for a lifetime from the interest earned on the amount, says Gadkari.

A look at the Trust website shows a string of schemes for training carers,for building the capacity of NGOs to run homes,vocational training,financial support to construct homes,health insurance and so on.However,parents and those working in the sector feel that schemes suffer from the lack of effective monitoring.With the state unwilling to put its money where its mouth is,the support systems required for the 20 million plus mentally challenged citizens to live with dignity seems a remote dream.

* MAMAS BOY:Abhishek Bannerjee,who has cerebral palsy,with his mother Mitra