Thursday, June 21, 2012

Special Report: LATINO PARENTS WITH AUTISTIC CHILDREN FACE MAJOR HURDLES

The series published on May 17th, 24th, and 31st in all of Eastern Group Publications' 11 newspapers. / La serie se publicó el 17, 24 y 31 de mayo en todos los 11 periódicos de Eastern Group Publications::Bell Gardens Sun, City Terrace Comet, Commerce Comet, County of Los Angeles, ELA Brooklyn Belvedere Comet, Eastside Sun, Featured News, Mexican American Sun, Montebello Comet, Monterey Park Comet, Northeast Sun, Vernon Sun, Wyvernwood Chronicle| http://bit.ly/MnvIyv

Latino Parents With Autistic Children Face Major Hurdles is a three part bilingual series focused on the issues that make it difficult for local monolingual Spanish-speaking parents in the East Los Angeles area to find information about autism and available services.

The series was produced in collaboration with the USC Annenberg/California Endowment Journalism Fellowships.

Part 1: While the number of Latinos diagnosed with autism is growing, getting information in Spanish is challenging.

Part 2: Autism, the Risk of Doing Nothing

Part 3: Know Your Rights to Better Advocate for Your Autistic Child

Mayores Obstáculos para los Padres Hispanos con Niños Autistas es una serie bilingüe de tres partes centrada en las cuestiones que dificultan la búsqueda de padres monolingües hispanohablantes en ubicar información y servicios para sus hijos diagnosticados con el autismo en la zona del Este de Los Ángeles.

La serie fue producida en colaboración con la USC Annenberg / California Endowment Becas de Periodismo.

Lea la serie EN ESPAÑOL:


1ª Parte: Mayores Obstáculos para los Padres Hispanos con Niños Autistas

2ª Parte: El Riesgo de Hacer Nada

3ª Parte: Capacitase para Mejor Abogar para su Hijo Diagnosticado con Autismo

SPECIAL REPORT: Latino Parents With Autistic Children Face Major Hurdles

Part 1 of 3: While the number of Latinos diagnosed with autism is growing, getting information in Spanish is challenging.

By Gloria Angelina Castillo, EGP Staff Writer

17 May, 2012  ::  Josefina Nieves is nervous. Her son Nestor is graduating from high school this semester and will soon be leaving for college. Nestor was diagnosed with autism at age two and half.

For Spanish-speakers, accessing information and resources is difficult and making time for therapies can be a challenge, yet Nieves, a single mother, is managing to raise not only one son diagnosed with autism, but two. Her teenage son Daniel also has the disability.

Lea esta nota EN ESPAÑOL: Mayores Obstáculos para los Padres Hispanos con Niños Autistas

Beside her can-do attitude, however, Nieves speaks English as well as Spanish and is computer and Internet literate—all abilities that give her an advantage accessing resources that can help improve her sons’ opportunities, and quality of life.

She also has the advantage of being an employee of Lincoln Heights’ based Fiesta Educativa, a non-profit group that educates parents about their rights, resources and about the disability.

When Nestor was diagnosed back in the mid 1990’s, the doctor told Nieves to lower her expectations: he would never talk, never get a job or get married.

“Who do you think you are to tell me that my son’s life would amount to nothing?” Nieves says she would like to ask that doctor now.

But Nieves’ “advantages” are not the norm.

Too few parents attend Fiesta Educativa meeting, held in Spanish, like this one in City Terrace in February. (EGP photo by Gloria Angelina Castillo)

Understanding what a diagnosis of autism means is difficult no matter who you are, but if you happen to be Latino, only speak Spanish, are illiterate or have little formal education, or not Internet savvy, the difficulties are significantly greater.

Highland Park resident Ana Brizuela’s son is a senior at Franklin High School and has autism. She says her son receives services for his disability through the school district, but not through the Eastern Los Angeles Regional Center that locally offers services to people with a wide range of developmental disabilities. That’s the  same center she claims misdiagnosed her son years ago with Attention Deficit Disorder, when the autism spectrum disability was not as well known.

“When my son was little I knocked on a lot of doors and I didn’t get any help,” she tearfully said in Spanish during a parent workshop in February hosted by Fiesta Educativa.
Brizuela is worried there is no safety net for her son as he enters adulthood.

Latinos and Autism
Autism, a term used to describe a group of complex developmental brain disorders, is being called a pandemic by some public health officials.

According to new figures by the Centers for Disease Control (CDC), one in 88 children have been diagnosed with the disability. The prevalence rate is up from 1 in 110 in 2006, and 1 in 150 in 2002.

One in 54 boys has been diagnosed with autism, that’s four times higher than girls with only 1 in 252 girls receiving the diagnosis, according to the CDC.

At the same time, Latinos are the fastest growing segment of the US population. From 2000 to 2010, the Hispanic population in California grew by 27.8 percent, according to the 2010 Census. More than 4 million Hispanics live in Los Angeles County alone, according to the 2010 census data.

But the CDC’s latest prevalence study does not include data from California.

“Autism is an epidemic. We never thought that autism would be as high as we are currently seeing, so it is an epidemic,” Dr. Carolina Peña-Ricardo of Children’s Hospital said in Spanish during a recent parent conference at the Mexican Consulate where Nieves also spoke.

Dr. Carolina Peña-Ricardo of Children’s Hospital addressed a small crowd of parents at a conference on Autism held at the Mexican Consulate last month. (EGP photo by Gloria Angelina Castillo)

The California Department of Developmental Services (DDS) has calculated a 70 percent increase in autism cases in the state from 2002 to 2007, and the number of Latino children with autism is increasing at a similar rate of white children, according to Dr. Peña-Ricardo.

In 2001, the CDC reported that Latinos report less concerns of developmental delays to their pediatricians, Peña-Ricardo said. She believes that could be one the factors lowing their numbers, but noted there are no studies that show this as a fact.

The spectrum disorder, which varies from child to child in severity, causes significant social, communication and behavioral challenges and in less severe cases those issues can be alleviated with intervention. Early intervention, by age three, is considered critical.

But knowing if you need to seek help is not easy.

Autism Speaks, But Does It Speak Spanish?

While organizations like Talk About Curing Autism (TACA) and Autism Speaks provide some information in Spanish, the information is not readily available in the community.

“A lot of the pamphlets we have are in English and we try to get as many as we can in Spanish but it’s [just] not there. It’s not there,” said Angelica Herrera, a parent coordinator at Fiesta Educativa.

The Eastern Los Angles Regional Center (ELARC), one of 21 private non-profit organizations under contract with the California Developmental Services (DDS) to coordinates services to people with developmental disabilities, serves the East Los Angeles and surrounding cities.

Sixty-nine percent of ELARC’s 9,000 clients are of Hispanic descent, and 2,000 have autism, according to ELARC Executive Director Gloria M. Wong.

A quarter of the autistic clients, of all ages, come from monolingual Spanish-speaking homes, Wong said.

ELARC and the Los Angeles Unified School District are the main sources of services for local children, but resources, funding, at both institutions are strained.

Centro Estrella Family Resource Center, run by non-profit Alma Family Services in unincorporated East Los Angeles, outreaches to parents using word-of-mouth and to community organizations through established relationships.

“It’s a lot harder when you’re a monoligual Spanish-speaking family and both parents work and don’t know what resources, or when they get the resources, or how much to ask for,” said Lourdes Caracoza, the center’s director of program operations. The center offers socialization programs and numerous other services considered key to helping children with autism thrive,

While autism greatly affects the Latino community, Fiesta Educativa’s Executive Director Irene Martinez says families are not getting all the information available.

“Partly it has to do with language, most of the information out is in English, most of the conferences, most of the trainings,” she said.

Lack of familiarity with institutions and how to navigate them, as well as immigration status also creates barriers for immigrant families.

“Sometimes they are afraid, it’s an element. For the most part the children are born here but the parents are not so they are afraid they are going to get into some legal difficulties so that holds them back from getting the services they have a right to, by law. So it’s a reality. We are trying to break down those barriers but situations like this make people more uncomfortable to come in and get more information,” Martinez said.

Nationwide there aren’t many resources for people of color regarding autism and even less for monolingual Spanish speakers, says Gloria Perez-Walker, parent advocate and host of the radio show “Special Ed For Busy Parents.”

“Even though autism is exploding in the US, the fact is the voices and access for services for Latinos is very minimal. I get clients who are told there ‘are no services’ for their child, or they are pushed into segregated settings for their child with autism, which limits their future ability to live independently, forget about actual employment,” Perez-Walker told EGP.

Angelica Herrera is a parent coordinator at Fiesta Educativa and works directly with parents like Brizuela, but says attendance at their monthly parent meetings is dismal. Herrera says she’s happy when five parents show up, but too often no one attends.

“Getting the word out has been a challenge,” Herrera told EGP.

And for many Latino parents, acknowledging that their child might have autism in the first place can be an overwhelming and confusing undertaking, better left in the dark.

 

SPECIAL REPORT: Autism, the Risk of Doing Nothing

Part two in a series: Major Hurdles for Latino Parents with Autistic Children

By Gloria Angelina Castillo, EGP Staff Writer

24 May, 2012  ::  Beatriz Quirarte was just 16-years-old when her son Kevin was born, four years later he was diagnosed with Autism. Sympathy and support were hard to come by, says the Spanish-speaking resident of East Los Angeles.

Frustrated, her husband would at times blame her for their child’s disability. Her family’s reactions to her son’s situation made her feel ashamed, she told EGP.

They would tell me, “Poor thing, he is sick,” she said. One doctor even told her it was her fault that her then five-year-old son did not speak. He’s your first child and you’re probably not talking to him enough, she says the doctor told her.

Lea esta nota EN ESPAÑOL: El Riesgo de Hacer Nada

Autism is a group of complex developmental brain disorders, which can manifest in a variety of ways, including an inability to speak or function socially. But at age 17, Kevin is now a junior at Garfield High School and on track to graduate. He spent two years in Garfield’s Junior ROTC, and learned to play the violin in the school’s orchestra class, he says proudly. His dream is to someday work for Pixar as an animator and to travel to San Antonio Texas to visit the Alamo.

Over the years, Quirarte’s husband has become better informed and more supportive, and she says family members are surprised Kevin has surpassed all their expectations.

“They … see all that he has accomplished, more than regular kids. All the discipline he has. Even his cousins aren’t as well behaved, some have chosen different routes, some have joined gangs, others have dropped out of high school… they see him and say ‘being the way he is, he has achieved so much,’” Quirarte said in Spanish.

But Quirarte is quick to point out that her son’s successes are in large part due to the special services she secured for him through the Los Angeles Unified School District, Eastern Los Angeles Regional Center (ELARC), and Centro Estrella Family Resource Center, run by nonprofit Alma Family Services.

For the last eight years Kevin has been going to Centro Estrella, where he’s built strong friendships and received behavior and socialization therapy, and where she takes monthly parenting advocacy classes.

“I’ve told moms who have sons like mine to come here,” but says they probably don’t go because they understand how can “improve their quality of life,” or because it’s something they have to do themselves, Quirarte told EGP in Spanish.

Even the most diligent parents, however, can see their efforts thwarted by the very system that’s supposed to help them.

Jose is 18 and a senior at Franklin High School in Highland Park, she says he’s watched for years as his Spanish-speaking mother, Ana Brizuela, has struggled to get him help. The teen, who asked not to use his real name, has gone with his mother to the Social Security Administration office and to his own disability evaluations.

“She always goes to fill out paperwork, always goes to places and talks about me,” says Jose, who plans to go to a local community college after he graduates.

Jose received some services through LAUSD, but not from the local regional center that provides services to people with a wide range of developmental disabilities. His mother claims the center misdiagnosed her son years ago with Attention Deficit Disorder. Today she worries that he is leaving school without a safety net in the community.

During a Fiesta Educativa meeting for Spanish speakers three months ago in City Terrace, Brizuel was encouraged to appeal ELARC’s diagnosis, something she says she still plans to do. But she has not yet followed up on a psychologist’s evaluation and she’s feeling crushed by other stressors—like possibly loosing her home, she told EGP.

“It’s so frustrating because there’s no one to give you the help you need… one has to fight, and fight and fight,” said the weary mother.

Ana Brizuela (right) shares her frustrations with a regional center employee during a Fiesta Educativa meeting. (EGP photo by Gloria Angelina Castillo)

She said people have made her feel like she’s asking for a handout when she’s just fighting to help her son. That’s a sentiment Maria Isabel Macias understands.

“Sometimes even our own people discriminate against us,” she said at the same meeting. Her still not fully potty-trained eight-year-old was first diagnosed with mental retardation, but now she is being told he has autism.

“Sometimes I would sit down to cry,” she said. “I’m in this country without family and I don’t know where to turn.” She says children with autism need to lean how to be independent, because their parents won’t always be with them.

Glassell Park resident Patricia Rasconi said her family accused her of being a bad mother and not teaching her son how to behave. Her son, 8, has been shuffled from school to school, and she was told that there would be no summer school for him, a point corrected by other parents in the group who told her LAUSD offers summer school to Special Education students.

Julifa Alas of South Gate, is waiting for the results of her eight-year-old son’s evaluation. He has Autism, Epilepsy and asthma and he is also not fully potty trained. “I see how he is, and I know he needs help…” she told the other parents who encouraged her to keep on top of her son’s case with the regional center.

But this meeting for Spanish speaking parents is unusual, and many Latinos fail to seek out the services that could help their children. Shame, lack of education or access to resources in Spanish, has left many parents feeling alone and overwhelmed, and their children far behind.

Autism Has No Cure, But the Right Early Interventions Can Make a Difference

The Centers for Disease Control (CDC) puts the number of children with autism at one in 88. And while the disorder can vary from child to child, a diagnosis can usually be made by age three. Some children seem to develop normally at first, but stop gaining new skills, or lose those they do have, between 18 and 24 months, according to the CDC.

Children who don’t respond to their name by 12 months, point at objects to show interest by 14 months, or don’t play “pretend” games (“feed” a doll) by 18 months, could be showing signs of autism, according to the CDC. Other signs include: avoiding eye contact; delayed speech and language; obsessive interests; usual reactions to smells, tastes, textures and sounds; hand flapping; body rocking, spinning in circles or walking on tip toes.

There is currently no “cure” for autism, but research shows that early intervention can make a big difference in a child’s development, according to the CDC.

Dr. Martha Rivera is a pediatrician at White Memorial Medical Center in Boyle Heights and says it’s very important for parents to take their children to wellness check-ups because that’s when doctors screen for developmental benchmarks and other issues beyond the child’s physical health.

A delayed diagnosis could result in the child not getting the early intervention help, he needs.

“One of the most important things I tell parents is that early intervention is very important,” Fiesta Educative Parent Coordinator Josefina Nieves told EGP by email.

She said when a child is three and has a behavior problem, it’s easy to pick him up and carry him away, or to stop him from running in the street, but when the same behavior is still going on at age 15 and the child is taller and stronger than mom, correcting the behavior is much harder. So early intervention with the right services, “such as speech therapy so the child can find a way to communicate” if they are in pain, sad, or happy is very important, she said.

Many of those diagnosed with autism also have sensory issues, and getting occupational therapy early can teach a child how to regulate the sensations they are feeling, she explained. A comprehensive behavioral assessment followed up with behavioral therapy can really change a child’s life, according to Nieves.

“When a child receives services early and appropriate to his/hers needs the child definitely can have a good and prospect life. Unfortunately in our community early intervention is not taken serious enough.”

Mining Through the Barriers, and the Risks

Next month, the California Journal of Health Promotion will publish a study by Emily Iland, president of the Autism Society of America, Los Angeles and a researcher at Cal State University, Northridge. Iland’s work focuses on the factors that impede Latina mothers from accessing services for their children with autism spectrum disorders.

While the Latino population in the United States is growing and the incidences of autism is on the rise, the number of Latino children identified with autism is not proportional to the Hispanic population, Iland writes in her study, Half a Chance is Not Enough: Latina Mothers of Children with Autism Struggle for Equity.

Figures from the US Department of Education indicate that Latino/Hispanic children with autism have half a chance (a risk ratio of 0.5) of being identified as Autistic and receiving services in their educational system, she writes.

Disadvantaged Spanish-speaking mothers are not bad parents, they just need information to become empowered, Iland told EGP.

Iland helped create Fiesta Educativa’s parent training program and says she has seen parents attend their first autism workshop when their child is 16. Language, behavioral and socialization that is not addressed through adequate therapies not only hurt a child’s ability to become independent and hold down a job, but they can also get caught up in the criminal system, she warns.

Parents tend to want to explain away behavior issues, like a child touching a stranger’s hair, but when that child becomes a teenager or adult and is traveling alone, touching a woman’s hair can be interpreted as having criminal intent, she said. As young adults, individuals diagnosed with Autism are also at risk of being taken advantage of by people with bad or criminal intentions because they may be naïve or misunderstand the consequences of their actions.

When a person with autism turns 22 or graduates from high school, they lose all their services provided by the school, Iland said. “When that ends, eligibility for adult services is discretionary… If you leave the educational program unready for life, you are out of luck.”

“Every parent’s worst fear is what will happen to my child when I’m gone,” Iland said. Culturally, Latino parents are also less willing to consider institutional placement, she said.

Fiesta Educativa’s Executive Director Irene Martinez says children with disabilities are sometimes more at risk than other kids to be bullied, and in some case, they become the bullies.

Behavior programs are key to helping a child, but the parent has to be informed and involved, Martinez said.

While it’s not true across the board for all Latinos, there are some autistic children who could be at risk of being in gangs, and that’s the case not just in East LA—it affects all cultures given certain socioeconomic factors, she said.

“It’s also related to self-esteem. They find their own self-esteem hanging out with gang members and things like that. Other times, parents just don’t know how to deal with it,” she said.

Felipe Hernandez, ELARC Chief of Consumer Services, says there have been some cases of regional center clients being involved in gangs, but they typically involve clients who have mild mental retardation and who come from households with long-time gang ties.

Some clients with mild mental retardation, or even higher functioning clients, have had chemical dependency issues, have been involved in criminal activity, such as car jacking, he told EGP.

While this is still rare, the regional center has seen the number of these types of cases rise over the last 10 to 15 years, he said.

ELARC addresses delinquency by offering supportive services that can take them in a different direction, he said.

Issues like these or teen pregnancy are not really an issue among girls because their parents tend to shelter them more, Hernandez said.

In LAUSD, students diagnosed with Autism don’t have higher disciplinary issues because their behavior is supported in their IEPS, according to Nancy Franklin, LAUSD special education administrator. However, there are a small number of children with autism in continuation schools, she said. There are 11,000 of students with an autism diagnosis in the district, according to Franklin.

In LA County juvenile detention facilities, about 500 out of the 2,300 in LA County juvenile detention facilities have IEPS, but only one has a diagnosis of autism, according to Margo Minecki, Public Information Officer for the Los Angeles County Office of Education

Parent advocate and host of the radio show “Special Ed For Busy Parents” Gloria Perez-Walker says Latino culture tends to be fatalistic in general, which doesn’t help parents advocate for their child with autism or disabilities in general.

“We also tend to think that disability happens to us because of previous life events, etc. I remember my mom telling the doctor who was diagnosing my son with autism at age 3 that I had never wanted kids when I was younger, as if I had somehow brought autism upon myself and my child,” Perez-Walker told EGP. And “I don’t feel it does much for me in the long run to be told that it’s a blessing, that God gave him to me for a reason, or that I am great because I am raising a child with autism. Of course I am! I am his mother! What I want as a Latina mother, and what a lot of my clients want, is more discourse about autism in our culture/families,” she said. I need to know more about “my child’s rights, and how to access and influence services and policy, and not more pandering to us in simplistic terms about our children who are different. That does us no good and leaves our children even further behind.”

Speaking at a parent conference on Autism in collaboration with Fiesta Educativa at the Mexican Consulate last month, the Mexican Consul in Los Angeles, David Figueroa, urged parents to seek information and advocate for their children diagnosed with the disorder.

“We have to break-down the fear, understand what Autism is, break-down the barriers to information, it is so important that we obtain that information,” Figueroa said in Spanish, to the predominately Spanish-speaking group.

“Unfortunately, sometimes in our Latin American cultures, there is always an aversion, or fear of facing difficult barriers … We must face reality and when we confront the reality we will be able to overcome the condition and the disadvantage that we might have,” he told parents.

 

SPECIAL REPORT: Know Your Rights to Better Advocate for Your Autistic Child

Last part in a series: Major Hurdles for Latino Parents with Autistic Children.

By Gloria Angelina Castillo, EGP Staff Writer

When Glassell Park resident Patricia Rasconi’s son was diagnosed with Autism, she wondered if it was something that would go away.

She grappled with the diagnosis, but soon learned she would have to advocate for her son if she wanted him to receive the services to help him speak.

Accessing services is not always easy, but Rasconi is making her best effort to help her son, something too many Spanish-speaking parents delay for years.

Stories like Rasconi’s are not unusual. In fact, they are on the rise.

The Centers for Disease Control (CDC) recently increased its estimate of the number of children with Autism to one in 88, up from the estimate of one in 150 just a few years ago. However, the CDC’s latest prevalence study does not include any recent data from California, where the majority of new births are to Latinos, many of whom do not speak English.

Lea esta nota EN ESPAÑOL: Capacitase para Mejor Abogar para su Hijo Diagnosticado con Autismo

Despite the booming Latino population, culturally sensitive information in Spanish on Autism is still hard to come by. (EGP photo by Gloria Angelina Castillo)

And while there are state and federal laws on the books that mandate services for people with disabilities, like Autism, the reality is parents have to fight for services. If you only speak Spanish, have little formal education or have little access to the Internet, finding culturally relevant information in Spanish that explains the disorder, not to mention your rights, is going to be a challenge.

California’s Lanterman Developmental Disabilities Services Act (Lanterman Act), mandates that individuals with developmental disabilities and their families receive supportive services to enable the disabled individual “to make decisions and choices about how, and with whom, they want to live…; achieve the highest self-sufficiency possible; and lead productive, independent and satisfying lives as part of the communities in which they live,” according to the East Los Angeles Regional Center, ELARC, website. The Act also established the creation of a system of regionally based centers, like ELARC, to provide those services.

The Autism Spectrum Disorder, which varies from child to child in severity, causes significant social, communication and behavioral challenges. Most experts agree that in less severe cases, some of those issues can be alleviated with early intervention.

Yet, while the media and many health care professionals are calling Autism an epidemic, no new federal government funding has been allocated to address the growing national issue.

What Are Your Rights?
—The Lanterman Developmental Disabilities Services Act (Lanterman Act) passed in 1969 outlines the rights and responsibilities of individuals with developmental disabilities. It underscores that developmentally disabled individuals have the same legal rights and responsibilities as all other people.
It also establishes that persons with developmental disabilities or at risk of developing a developmental disability are entitled to supportive services.
Rights listed under the Lanterman Act aim to provide the individual with services and supports to live the most independent and productive life possible, according to the California Dept. of Developmental Services’ Consumer’s Guide to the Lanterman Act, available online in both English and Spanish.
Regional centers must provide information to their clients in a way they can understand, whether through sign language or communication tools, or a facilitator or interpreter.
Developmentally disabled individuals have the right to choose where and whom to live with, go to school, work, how to belong to a community, have relationships and to decide what what services and supports they want and need.
They also have the right to: dignity and humane care; privacy; appropriate program of public education; prompt medical care and treatment; religious freedom and practice; social interaction and participation in community activities; physical exercise and recreation; to be free from harm and hazardous procedures, and to receive services and support in the least restrictive environment.

—Section 504 of The Rehabilitation Act of 1973 states that students with disabilities have the right to a free, appropriate public education. Special education must be provided in the least restrictive environment, to the extent appropriate with non-disabled peers.

—The Individuals with Disabilities Education Act (IDEA) requires public school systems to have appropriate Individualized Education Programs (IEP’s) for each disabled student and mandates some procedures for IEPs, such as it must be developed by a team of knowledgeable persons and updated every year. Parents are entitled to due process if they disagree with the proposed IEP, and/or appeal the State agency’s decision to State or Federal court.

—Americans with Disabilities Act (ADA) prohibits the discrimination on the basis of disability in employment.

—Los Angeles Unified School District, LAUSD: Parents are entitled to reasonable accommodations to enable their participation in their child’s educational decision-making, including requests for oral interpretation and written translation of reports to the parent’s primary language.
Parents can bring someone with them to IEP meetings. If a parent disagrees with an IEP, he can attempt to resolve the disagreement at during the IEP meeting, if unsuccessful, he can request Mediation, or Due Process Proceedings

And in California, government-funded regional centers—which administer services to people with a wide range of developmental disabilities—have seen their budgets slashed as the state tries to come to terms with is deepening budget hole. So as well intentioned as the laws might be, access to resources is a problem, especially if you are low-income.

Particularly troubling is the lack of information available in Spanish in a state where the Latino birthrate has far eclipsed all other groups.

“A lot of the pamphlets we have are in English and we try to get as many as we can in Spanish but it’s [just] not there,” according to Angelica Herrera, a parent coordinator at Fiesta Educativa, a nonprofit advocacy and service provider with seven chapters across California, including one in the Los Angeles neighborhood of Lincoln Heights.

Next to the Los Angeles Unified School District, ELARC is the largest provider of services to people living in the East and Northeast L.A. area.

Sixty-nine percent of East Los Angeles Regional Center’s 9,000 clients are of Hispanic descent, and 2,000 have Autism, according to ELARC’s executive director, Gloria M. Wong. A quarter of the autistic clients, of all ages, come from monolingual Spanish-speaking homes, Wong said.

But the center does not translate their Individual Program Plans (IPPs) — the service contacts they have with their clients — into Spanish. According to Wong, they do not translate legal documents.

Some disability rights advocates see this as a problem.

But Wong says the Lanterman Act does not require regional centers to translate client IPPs. The Act only requires that a parent or client understand the information discussed at an IPP meeting, she said.

ELARC says it meets the language needs of their Latino clients by hiring bilingual service coordinators. Eighty-four percent of its 133 service coordinators, who manage client cases, are fluent in English and Spanish, according to Wong. “The number of Hispanic, bilingual service coordinators far exceed monolingual Spanish-speakers,” Wong told EGP.

The Los Angeles Unified School District, which has about 11,000 students diagnosed with Autism, will translate Individualized Education Programs (IEPs) and provide an interpreter if requested to, according to Nancy Franklin, LAUSD special education administrator. The IEP is a contract to establish what special services and resources a special needs student will receive from their local school or the district, and details the student’s academic goals for the year.

The failure to translate IEPs has resulted in the Disability Rights Legal Center (DRLC), located at Loyola Law School Public Interest Law Center in downtown Los Angeles, filing complaints both at the school district level and with the US Office of Civil Rights, according to DRLC Executive Director, Paula D. Pearlman.

Pearlman says ELARC’s failure to offer translated IPPs appears to be a clear violation of their client’s rights.

Some Local Resources
While a handful of Autism-related organizations and agencies offer parent workshops in English, and to a lesser extent in Spanish, most are located outside the greater East Los Angeles area.
Fiesta Educativa and Centro Estrella Family Resource Center are two local resources where Spanish-speaking parents can seek information and support.
Fiesta Educativa holds weekly “Fiesta Familiar” parent/caregiver support meetings at different homes in the East and Northeast Los Angeles area. The organization will host their 34th annual statewide Conference on Sept. 28 in Los Angeles.
For more information visit http://www.fiestaeducativa.org/ or call (323) 221-6696.
For information on Centro Estrella Family Resource Center services, visit http://www.almafamilyservices.org/centro_estrella.asp or call (323) 526-4016.

“Where’s your recourse if you don’t know what you have?” or what you agreed to, Pearlman said.

She says while the document may be verbally translated at the IPP meeting, when the parent or client goes home he or she may not be able to read it over or understand it.

“I appreciate what they are trying to do [with bilingual staff], but it is not the same. It doesn’t give parents full empowerment,” she said.

Failing to translate IPPs for parents who do not understand English is discrimination, she said. “In this society where knowledge is power, not providing it in a language they can access is disempowering, it does nothing to service the kids and adults,” Pearlman said.

ELARC is one of 21 regional centers in California funded by the California’s Developmental Services Department. The department has recently come under scrutiny by lawmakers who question the inequalities of funding at regional centers—specifically the considerably less funding for services for Black and Latino children.

Last year, LA Times reporter Alan Zarembo found that one regional center in Orange County spends about $18,000 in services per child, while the South Central Los Angeles Regional Center spends less than $2,000 on each child diagnosed with Autism.

The City of Bell Gardens, where the population is over 95 percent Latino and predominantly Spanish speaking, is in the South Central service area.
Among the South Central regional center’s clients are 257 children and adults from Bell Gardens who have been diagnosed with a permanent cognitive developmental disability, according to Maura McGinnis Gibney of the South Central Los Angeles Regional Center Family Resource Center. She said the center will translate IPPs, but only if requested by the client.

Emily Iland, president of the Autism Society of America, Los Angeles and a researcher at Cal State University, Northridge, says newly immigrated, poor, monolingual Spanish-speaking single mothers of Mexican origin are the least likely to get regional center services for a child diagnosed with Autism.

Next month, the California Journal of Health Promotion will publish Iland’s study, Half a Chance is Not Enough: Latina Mothers of Children with Autism Struggle for Equity. Her work focuses on the factors that impede Latina mothers from accessing services for their children with Autism.

Iland writes that personal, familial and societal barriers, such as language, level of education, socioeconomic status, immigration status, cultural issues, and unfamiliarity with the service system, are some of the barriers that block Latina mothers from accessing early intervention services for their autistic children.

She says institutional barriers for Spanish-speakers, such as the lack of adequate verbal and written translations, are becoming more evident.

But it’s not just the government-funded programs that are failing to meet the needs of Spanish speakers; the large nonprofit advocacy groups don’t offer many resources to this population either. There are no national Latino organizations advocating for the rights of the Spanish speaking Autism population. In the nonprofit world, Autism speaks English.

“With forty-four percent of Los Angeles speaking Spanish or being Latino, we are all struggling to keep up with the demand. At Autism Society of America, Los Angeles, we plan to do so, but we need funding,” Iland said.

Talk About Curing Autism’s (TACA’s) Spanish program outreach coordinator, Mari Nalbandian, says parents have to take the initiative. She told EGP a school district interpreter at an IEP meeting is often just a “bilingual” custodian or secretary brought into to translate, but says a lot can be lost in translation.

She suggests parents ask in writing for a qualified interpreter, who makes a living as a translator, to attend an IEP meeting. She also notes it can take weeks or months for a parent to receive a translated IEP.

“Parents are lost, they know their child needs services, but they don’t know which those could be. A parent, as part of an IEP team, can request services that are appropriate,” she said. But “Most parents go, sign the IEP without understanding what kinds of services, or the specific needs of their child could be.”

TACA has been outreaching to the Latino population since 2009, according to Nalbandian She says parents must make an effort to attend IEP meetings, and learn how they can contribute to their child’s educational goals and achievements … But first, she says, they need to understand Autism and their child’s particular needs.

There are several guides in Spanish on Autism put out by local organizations, seek them out, read them, “no one expects you to read them in a week,” Nalbandian said, explaining that’s the first step to knowing about an autistic child’s rights.

“All I can do is provide information… I can’t do the work for them. Some parents are lost, they want you to do it for them, but they will have to do it for many years to come,” she said.

However, TACA and other mainstream Autism awareness groups’ presence in East Los Angeles’ Spanish-speaking community leaves a lot to be desired. TACA, for example, holds parent workshops and support group meetings in West Covina, a long distance to travel for low-income
families dependent on public transportation.

Disability Rights has published an online guide, the Children’s Benefits Access Guide, to educate parents of children with disabilities in Los Angeles County who may be eligible for public programs. The guide, however, is not available in Spanish due to lack of funding, Pearlman said.
Spanish-speaking parents can be hard to reach and face many obstacles when trying to access information and services for a child with autism — some are self-imposed, others are institutional.

No matter the reasons, however, the cost of doing nothing is too high, both to children with autism and the communities where they live. One of the first steps to turn things around is to make sure more culturally sensitive information is available in Spanish and English, and to empower Latinos parents so they can in turn ensure that their children are prepared for adulthood and ready to contribute to society.

 

<<EGP Staff Writer Gloria Angelina Castillo was inspired to write this series based on her own experience with her son, who has been diagnosed with Autism and receives services through ELARC and LAUSD.

 

This series was produced in collaboration with the USC Annenberg/California Endowment Journalism Fellowships program.

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