Know Your Rights to Better Advocate for Your Autistic Child
Posted: Jun 17, 2012
Editor's Note: This is the final part in a three-part series. Read Part 1, Latino Parents With Autistic Children Face Major Hurdles, and Part 2, Autism, the Risk of Doing Nothing.
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.
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.
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.
“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.â€¨ 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 autistic 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-incomeâ€¨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.â€¨ 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.
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.â€¨It also establishes that persons with developmental disabilities or at risk of developing a developmental disability are entitled to supportive services.â€¨
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.â€¨
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. â€¨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 services and supports they want and need.â€¨
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 entitles parents 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.â€¨ 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.
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.â€¨Fiesta Educativa and Centro Estrella Family Resource Center are two local resources where Spanish-speaking parents can seek information and support.â€¨ 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.â€¨ For more information visit www.fiestaeducativa.org or call (323) 221-6696. â€¨For information on Centro Estrella Family Resource Center services, visit www.almafamilyservices.org or call (323) 526-4016.
This story was produced in collaboration with the USC Annenberg/California Endowment Journalism Fellowships.
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