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Conference Helps Spanish-Speaking Parents of Disabled Children

Parents listened to a presentation during the 2011 Latino Health Care Conference for Spanish-speaking parents of children with disabilities.
Parents listened to a presentation during the 2011 Latino Health Care Conference for Spanish-speaking parents of children with disabilities.
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DNAinfo/Julie Shapiro

MIDTOWN — Raising a child with developmental disabilities is hard — but for parents who don't speak English, it's even more challenging.

Spanish-speaking parents, in particular, may face cultural barriers or immigration concerns that make it more difficult for them to ask for help and get the services they need for their children, said Jennifer Shaoul, senior coordinator at the nonprofit YAI Network.

"In Latino culture, the family is responsible for taking care of your own," Shaoul said. "It's not easy to reach out to strangers, whether Spanish-speaking or not, to take care of your kid."

To help bridge this gap, YAI Network is holding its eighth annual Latino Health Care Conference on Tuesday, presenting a full day of information that is entirely in Spanish.

The conference, at Midtown's CUNY Graduate Center, will feature Spanish-speaking psychologists, doctors, social workers and occupational therapists who will be available to speak with families and answer their questions.

"Once a year, they get wonderful information in their language," Shaoul said of the hundreds of people already registered for the conference. "People feel like it's an embrace."

The conference is geared toward parents of children with conditions including autism, cerebral palsy, seizure disorders and intellectual disabilities. Workshops include advice on everything from preparing for emergencies to navigating the Department of Education's special education process.

Shaoul said the conference is especially important because studies have shown that Latino parents of children with developmental disabilities are more likely to be depressed than Asian, black or white parents. During informal surveys of past conference attendees, Shaoul found that an overwhelming majority were concerned about depression.

Part of the problem is that children with developmental disabilities often need outside help and can't be cared for by family members, as is traditional in many Latino families, Shaoul said.

"You can't rely on a 14-year-old to take care of a 17-year-old who needs his diaper changed," she said.

Clara Berg, family specialist at the New York Deaf-Blind Collaborative, has worked with many Latino parents who are torn between their love for their child and a sense of shame or devastation over the child's disability.

"The burden can be heavy," said Berg, 65, a Bayside resident.

She speaks from experience. Berg arrived in New York 35 years ago from Uruguay, understanding not a word of English. Her son Kenny was born premature four years later, and as doctors struggled to save his life, they irreparably destroyed both his eyesight and his hearing.

In the years that followed, Berg overcame both language and bureaucratic barriers to get her son the care he needed. Today, Kenny Berg, 31, is working on a farm and recently moved into his own apartment, while his mother devotes her time to helping other parents.

"The support that YAI provides is absolutely phenomenal," she said.

YAI Network's Latino Health Care Conference will be held March 6 from 9 a.m. to 3 p.m. at 365 Fifth Ave. at 34th Street. Walk-ins welcome.