ANNAPOLIS – After months of tests, doctors diagnosed Amalia Ochoa’s infant daughter Vicky with brain abnormalities. Doctors said that Vicky wouldn’t walk or speak, and if Vicky’s head continued to grow at the current rate she wouldn’t live past 3.
Ochoa is originally from Mexico, speaks little English and can’t drive. She had to find therapy and support services for Vicky while navigating a foreign culture, medical system and language.
Ochoa and Vicky are part of a growing population of Hispanics who either have, or care for, a person with a disability. They often don’t have the same access to services as their non-Hispanic counterparts because of lack of awareness or cultural and language barriers.
The Arc of Frederick, a local chapter of a national organization that provides support, assistance and advocacy to people with developmental disabilities, has created a free toolkit to reach out to the underserved population of Hispanics with disabilities.
The tool kit, called the Hispanic Outreach Launch Assistant, or HOLA! Toolkit, was developed in partnership between The Arc of Maryland and The Arc of Frederick County. Additional groups were consulted during the creation of the toolkit, including other Maryland Arc agencies, the Governor’s Commission on Hispanic Affairs and the state education department.
The kit includes tips for cultural sensitivity, ways to identify and partner with other community resources, funding sources and a list of service agencies broken down by county.
About 20,000 Hispanics in Maryland have a disability. Despite the growing population, The Arc says that few agencies specifically reach out to Hispanics.
When Ochoa and her family moved to Frederick County, she had a difficult time finding the right school and services for Vicky, who was diagnosed with bilateral cerebral cortical dysplasia and polymicrogyria.
“When we moved to Frederick, at the beginning I felt very lost in Frederick,” Ochoa said, through an interpreter. “I felt our life changed when we found The Arc.”
Vicky is now 10 and has learned to walk. Although she can’t speak yet, Ochoa is hopeful that Vicky will continue to make progress.
David Moreno, a supervisor at The Arc of Frederick County and coordinator for the toolkit, hopes the toolkit will facilitate communication with service providers and will help Hispanic families feel connected to the community.
“They are very limited because they don’t know what’s out there. They feel isolated, and if you add to that the family has children with disabilities … we should promote ways for families to come out of the darkness, an opportunity for families to come together,” Moreno said.
Effective communication with providers can improve quality of life for people with disabilities and their families.
Olga Flores, who is originally from El Salvador, struggled when her son Steven was diagnosed with autism.
“We as parents also suffer. It’s a very heavy load to carry and to understand at the beginning. There are so many questions: what to do, trying to understand him, trying to understand the diagnosis,” Flores said through an interpreter.
Flores and her family went through a difficult time financially. The Arc helped Flores contact Social Security so Steven could get the benefits he was entitled to.
The money allowed the family to move to a new home where Steven had his own room. Steven was so excited and disbelieving when he saw his own room that he repeated to Flores, “For me? For me?”
According to the U.S. Census, the Hispanic population in the United States grew 43 percent between 2000 and 2010. Hispanics are the nation’s fastest growing minority, and make up 16.3 percent of the United States’ population.
In Maryland, the Hispanic population nearly doubled between the 2000 and 2010 census. In 2010, there were almost 500,000 Hispanics living in Maryland.
The toolkit is available for free download at www.thearcmd.org.
