East End Disability Associates find way to help the region's underserved Latino population

The leaders of East End Disability Associates knew they had a problem.

About 21% of Long Island’s population is Latino, yet a New York agency's statewide figures show less than 9% of that population was taking advantage of support services available for intellectually and developmentally delayed individuals, like people with autism.

It wasn’t just a hypothetical numbers problem. "Anecdotally, I saw how that matched how we were doing on the East End" in having a small set of Latino clients, said Joy O'Shaughnessy, executive director of the Riverhead-based nonprofit established in 1993.

They knew they had to do better reaching Long Island’s largest community of color. And they knew they needed help. EEDA had joined the Kinexion Network, a management service organization that supports seven groups that provide services to people with disabilities.

"I was like we need to find a greater way to connect with these communities so that we can support them as well," O'Shaughnessy said.

The organization provides what is called self-directed care, which means a family decides what kind of support their intellectually or developmentally disabled family member needs and then seeks approval from the state Office of People With Developmental Disabilities.

Her organization first used a $10,000 grant to do outreach in the East End's Latino community, but it wasn’t enough to make deep inroads. She said they needed to make better connections with organizations already serving the Latino community and that had gained their trust, especially as some members of the Latino community are newly at risk for deportation under President Donald Trump’s tough new immigration policies.

OLA of Eastern Long Island, a Latino-focused advocacy nonprofit, is an organization that helped EEDA reach out to Latino families for an educational workshop about the services they provide. "We're standing at the ready to do more," said Minerva Perez, OLA's executive director.

Earlier this year, EEDA received a $180,000 grant from Manhattan-based Mother Cabrini Health Foundation that O'Shaughnessy said enabled the organization to do two things: hire two Spanish-speaking outreach coordinators, and to finance the translation of voluminous state-required paperwork from English to Spanish for Latinos seeking services.

In a statement to Newsday, Daniel Frascella, Mother Cabrini's chief programs and grants officer, said the foundation "supports initiatives that promote independence and community integration for people with disabilities. We're proud to support East End Disability Associates in enhancing culturally and linguistically competent services for Latino individuals with intellectual and developmental disabilities on Long Island. This grant will empower Latino families, to actively participate in service decisions with the help of dedicated outreach support brokers."

Perez said of EEDA's plan: "Hiring the right people to serve and support our community on the East End of Long Island is no small task. I think that is key ... We are happy to stay involved, in terms of what it takes to hire the right people for such an important position."

O'Shaughnessy said the outreach coordinators would "work for a year going into the community and trying to make these connections, and develop relationships with these organizations that are already supporting this community. And then they could hopefully help introduce us to people who needed services." Then, she said, the coordinators would become what EEDA is calling "support brokers," who will work with families, helping them create a service plan and filling out the paperwork required to get state support.

O'Shaughnessy said the grant also enabled the nonprofit to invest in changing some of its documentation from English to Spanish.

One Latina mother is getting EEDA help in applying to the state for self-directed behavioral services for her 20-year-old U.S.-born autistic son. The woman, who did not want to be identified because she is in the country illegally, said in Spanish in a phone interview through an interpreter, Simja Bezalel, a broker manager at EEDA, that she was trying to plan for socialization activities for her son who will age out of special education classes in a few years.

 "He likes music. He likes art," the mother said. But, she said, when he gets frustrated, "He acts out. There is screaming. There is yelling."

Bezalel said EEDA would help the woman navigate the process to receive state-funded services for her son.

"It will allow her to hire a staffer to work with her child, someone who speaks Spanish," Bezalel said. "It would allow her to train the worker on the best way of working with her child ... She has the power to choose who works with her son."

By Olivia Winslow

olivia.winslow@newsday.com@newsollie