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July 22, 2014

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Spanish-language services vital, but scarce, for Hispanic parents of children with disabilities

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Christopher DeVargas

The Loya family at their apartment, Thursday April 26, 2012. The Loyas participate in a support group at Nevada PEP for their son Jovy, who suffers from Asperger’s syndrome.

Parental Support

The Loya family, from left to right, Gonzalo, Jovy, Kenneth and Susana Reyes pose in their apartment, Thursday April 26, 2012. The Loyas participate in a support group at Nevada PEP for their son Jovy, who suffers from Asperger's syndrome. Launch slideshow »

IF YOU GO

  • Nevada PEP, a nonprofit organization offering free services to families with children with disabilities, offers a wide range of support groups and training sessions. A full calendar can be found at www.nvpep.org.
  • The Spanish-language support group meets at 5:30 p.m. on the last Wednesday of every month at the Nevada PEP office, 2101 S. Jones Blvd. Suite 120.
  • The next Spanish-language anti-bullying seminar will be 6 to 8 p.m. May 7.
  • For information call 388-8899.

When a child is diagnosed with a disability, parents often feel isolated — especially as the child enters school.

Instead of stocking a pencil case with school supplies and purchasing an X-Men lunch box, parents of a child with disabilities are working with school officials on a course of action for the child’s educational needs, collaborating with therapists and taking a crash course on the ramifications of the diagnosis.

Add a language barrier to that process, and the parents can get lost as they try to navigate the maze of available services and determine the best educational track for their child.

“A lot of families, when they first receive the diagnosis, feel like they are alone,” said Cynthia Escamilla, who runs a Spanish-language support group at Nevada PEP, a nonprofit organization that works with parents of children with disabilities. “The whole process can be intimidating. If Spanish, or some other language, is your first language, it can be frustrating. You are navigating a culture and system that is unfamiliar. Parents don’t get all the information they need, and they feel isolated.”

Nevada PEP is one of the Southern Nevada organizations offering services for parents of disabled children, and one of the few offer programs in Spanish. There is a monthly parents support group, and also training courses in Spanish, such as an upcoming anti-bullying session.

“Every disabled child is eventually a victim of bullying,” Gonzalo Loya, a member of the support group, said in Spanish. “That is a big topic at meetings. We get so many parents who arrive frustrated. A lot of time is spent on helping people navigate the system and sharing information. It’s tough to find help in Spanish, and a lot of this stuff is very complicated.”

Last year Loya, with the help of Nevada PEP, was able to arrange a new assessment for his 9-year-old son, Jovy. Loya felt like Jovy was still not in the right program. In Arizona, Jovy had been diagnosed with attention deficit hyperactivity disorder, Loya said. Later, Jovy was diagnosed as autistic and was placed in a special education class in Las Vegas.

“He is very intelligent but has problems controlling his movements,” Loya said about Jovy. “He is very advanced from an academic standpoint, but his social skills are unfocused. He was in a special education class with kids with much stronger problems, and he was falling behind academically.”

After Loya pushed for a new evaluation, Jovy was reassessed, and it was determined that he fell at the less severe end of autism spectrum. Jovy was finally diagnosed with Asperger’s syndrome, which is characterized by difficulties in social interaction accompanied by repetitive patterns of behavior and interests but typically allows for normal cognitive and linguistic development. Jovy was moved into a regular class at C.P. Squires Elementary School but still has a therapist who works with him when he has an episode of uncontrolled or disruptive behavior. He also meets with the therapist throughout the week.

“I came to Nevada for work,” said Loya, who is a computer technician. “But I lived in Texas and Arizona, and the level of services there was much better. Here, it is not very personal, and the level of education is very low.”

Just as Nevada ranks low among state spending on education per student at every level, the state also ranks near the bottom for special education funding. A May 2011 report on special education from Fordham University placed Nevada well below national averages for per-pupil spending and teacher-to-student ratio.

Funding for special education comes from the federal, state and local governments, and Nevada has increasingly pushed the burden toward local districts.

A 2009 Nevada Department of Education report on special education pointed to a 14-year trend of reductions in state support, noting the state portion of special education funding fell from 56 percent in 1988 to 35 percent in 1994 and 23 percent in 2008.

“The diminishing level of support creates a vulnerability to legal challenges on the basis of ‘adequacy,’” the report concluded, referring to federal guidelines for providing an “adequate” level of education to all students.

That is where organizations like Nevada PEP, a nationwide nonprofit organization with offices in every state, comes in. Nevada PEP, where most of the employees have family members with disabilities, strives to empower and educate parents, and provide them with the tools they need to take control of their child’s education and treatment.

“We work with parents of children with disabilities from birth until age 26,” said Robin Kincaid, Nevada PEP’s training director. “Sometimes families feel like they don’t have many options. It’s not just early schooling but later in life, too. Does the child plan to go to college? What will they do after high school? What kind of jobs might they train for?”

In Southern Nevada, Milagros Escondidos (Hidden Miracles) also works with Spanish-speaking people with disabilities and their families, and Talk About Curing Autism and Families for Effective Autism Treatment are two autism-specific organizations.

“We hear about a wide range of issues,” said Guadalupe Alvarez-Cerna, one of Nevada PEP’s bilingual staff members. “We here about a lot of bullying issues. Sometimes parents will formally request something in a letter, but the school won’t take it because it’s in Spanish. Well, they have to accept it. Sometimes they just say they don’t feel welcome.”

Olivia Espinosa, who participates in the support group, moved from Pahrump to Las Vegas after her son, Matthew Villalobos, was diagnosed with autism when he was 20 months old. She has since started her own discussion group for parents.

“There is a lack of preparation, information and training. Sometimes the school staff don’t even know what services are available from the district,” Espinosa said of the school system. “That is what moved me as a mother. The Hispanic community doesn’t have sufficient services. If it weren’t for groups like Nevada PEP and the others, we would be lost.”

Loya is happy with the new educational plan for Jovy and credits Nevada PEP with helping him to push the district for a re-evaluation. Still, he would like to see more support made available for Spanish-speakers from the district and other organizations.

“We need more of these groups,” Loya said. “Once a month is not enough. The need is great when you think of all the Spanish-speaking families who have children with disabilities. The classes could be once a week. Support for Spanish speakers is very limited.”