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Ageing with Down’s

Kulkarni has Down’s syndrome and though his mother is glad that he has lived a long, mostly healthy life, the future worries her.

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The current generation of people with Down’s Syndrome — an abnormality that causes  developmental and physical disabilities — will be the first to survive its parents. But how do parents arrange for financial, residential and caretaker needs? Kareena N Gianani reports

 Meeting people makes Bhushan Kulkarni’s day — he waves to everyone at his school meeting room and sees to it that his mother is seated before him. As he takes his seat, the 43-year-old adjusts his kurta to avoid creases, looks up to introduce himself and beams. “He is affable and loves school. For years, he has been waking up early on Sunday, only to be reminded it is a holiday,” says his mother, Mangala. “He is an easy-going person, but in a few years, that won’t be enough.”

Kulkarni has Down’s syndrome and though his mother is glad that he has lived a long, mostly healthy life, the future worries her. “A decade ago, one suffering from Down’s could live up to 35-40 years. This is probably the first generation of individuals with Down’s who will live much beyond 50 and survive their parents. The question we need to ask is, where will they then spend their later years, how will the less independent cope and who will provide guidance?” asks Dr Vrajesh Udani, paediatric neurologist at the Hinduja Hospital.

Unlike most other schools that admit special individuals only till 18, Kulkarni has found a rare retreat at the Skills and Ability School at Mulund. It has an occupational therapist as well as other trained staff. But this doesn’t put Mangala’s mind at rest. Not completely.

“We have saved up for our son and have taught him essential skills. But money will not come to his rescue when he has to cross a road or if a dog walks up to him — he is scared of that,” she says. As the last resort, Kulkarni’s parents visited group homes in and outside Mumbai. “I was revolted at the conditions — children and adults wailing, ayahs rebuking them… one of the homes even had members who were almost unclothed. I never went back,” recounts Mangala.

With few special schools and even fewer residential facilities, many parents turn to family, especially siblings, to take over the responsibility. Many, including doctors, suggest building trusts in the person’s name and carefully planning finances and estate as the child turns older.

Parents like Tony Pereira are taking this advice very seriously. He plans to buy and transfer property to Michelle, 21. He believes he is lucky to have a younger daughter who is fiercely protective of Michelle. As Michelle whistles aloud to Bollywood music in her room, Periera and his wife Suzan, speak about her future. “We made a conscious effort to raise our younger daughter, Rochelle, to be sensitive and include Michelle in her circle of friends.” Rochelle knows her responsibilities. “I am looking for a groom and clarify my stand at the outset. I will not compromise when when it comes to Michelle.”

Things weren’t the same for Giriraj. His sister is married in Pune and the 24-year-old’s parents were keen to see how well he could be on his own. A year at Nava Kshitij, a Pune-based vocational and recreational centre for the mentally and physically challenged and Giriraj’s guide claim he doesn’t miss home. “He speaks fluently in three languages and makes wonderful candles. You should watch him trek — I cannot imagine he used to give his mother a tough time back home,” says Neelam Nawadkar, a social worker. 

For parents who can’t consider group homes, all isn’t lost. For Prafuna Burde, mother of 21-year-old Pranay, ensuring his financial independence is a decision she is proud of. “You have to take risks — like you do with every child. In no way did I let people allow any leeway for Pranay. He played with others, taught himself simple chores, outgrew his behavioural problems and has learnt to fill bank slips,” Prafuna says.

Pranay was encouraged to go shopping and if a shopkeeper ever cheated him of a small amount, she taught him to be wary. Pranay rarely made mistakes after that. With time, she will let Pranay handle his finances, too. “You have to set them free and support them,” Prafuna feels.

Aware that Pranay will require guidance in her absence, she formed a support group with the help of families who have children with mental and developmental challenges.
The group meets every Sunday, arranges outings, skill workshops and gladly looks after each other.

The effort shows. “I don’t have a minute to spare,” says Pranay. “I had to prove myself to earn this job. Next, I want to buy a cellphone with a music player. No games. I don’t like them much.”

g_kareena@dnaindia.net
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