Latinos' Quest for Services for Down Syndrome

Sara Diaz lost her first baby in childbirth, and she wanted to take no chances with her second pregnancy, so she decided against amniocentesis, a test that can detect genetic disorders in unborn babies.

But when her son arrived prematurely at six months, her happiness was mixed with sadness.

In recovery, after giving birth by caesarean section, Diaz was told by her doctors that her son was born with Down syndrome.

Affecting one in 800 live births, Down syndrome is the most common chromosomal abnormality. Those with the syndrome, who are born with an extra chromosome, or trisomy 21, typically have unusual facial features, suffer from mild to severe mental retardation, and are at high risk for congenital heart defects and other health problems. Nearly half of all children with Down syndrome have a congenital heart defect.

The risk of conceiving a child with Down syndrome and other chromosome abnormalities increases with age. For a mother at age 25, the odds are 1 in 1,250, versus 1 in 106 at age 40.

Approximately 80 percent of babies born with Down syndrome are born to women under the age of 35, as there are more pregnancies among this age group.

New recommendations from the American College of Obstetricians and Gynecologists suggest that all pregnant women be screened for the disorder.

Back home in Rosendale, Mass. Diaz, who came to the U.S. from Colombia in 1992, began her quest for information and help. "Since my son was born I struggled to help him and get him the services he needed".

Under the Individuals with Disabilities Education Act (IDEA), states and public agencies should provide early intervention services from birth to 2 years old and special education until they turn 21. Eligibility criteria vary by state.

One agency "told me my son didn't need those specific services because he was not going to get better," said Diaz, who had been a university professor in Colombia. "Some people thought that because I couldn't speak English very well I was ignorant."

She began looking for other Spanish-speaking mothers in her situation. In 1999, she founded a Spanish-language support group for families of children with Down syndrome in Massachusetts. She also took psychology and special education classes at the Urban College of Boston and started a journey of advocacy and activism.

Currently, she is the Latino outreach coordinator of the Parent Training Information program and interpreter support for Family Ties. Both projects are sponsored by the Federation for Children with Special Needs . She also volunteers for the Massachusetts Down Syndrome Congress and the National Down Syndrome Congress .

"Eventually, I was able to defend myself and fight for my son," she said.

Challenges for Latino Families

Jan Blacher, Ph.D., professor and past faculty chair of the Graduate School of Education in the University of California Riverside , has conducted quantitative and qualitative research on families with children with developmental disabilities for more than 22 years, 10 of them focused on Latino families living in California.

Blacher said that Latino families with children with developmental disabilities face challenges with regard to access to services, cultural clashes and language barriers; but there's a "wonderful and effective statewide service system in California" called the Regional Center System, sponsored by the Department of Developmental Services, that provide services and resources to children who have developmental disabilities and their families.

"The regional centers make a great effort to have bilingual services, that's one of their priorities. But even so, we still find an access difference," Blacher said.

Blacher's research showed that immigration status – even with proof of the child's citizenship – can make parents afraid of accessing and demanding services for their kids. "They might be afraid to be the squeaky wheel," she said.

Cultural barriers are also present when parents try to interact with institutions. "Many of the Latino parents who participated in the focus groups wanted more clinical services than administrative services," she said. "They want someone to hear them out and sometimes the service provider feels they are not there to do that."

The cross-cultural rapport is necessary to achieve a full scope communication between health provider and patient. "It is hard when you have service providers that only try to convey the facts and not the subtleties."

"The parents often receive the news in the hospital shortly after their baby has been born. There may not be interpreters available, and often there aren't," said Susan Martorell, social work consultant of the Down Syndrome Association of Atlanta and program director of the Asociación Hispana de Síndrome de Down de Atlanta.

One family, Martorell recalls, was told their baby was ‘infected' with Down syndrome.

"I am sure the doctor didn't mean to say that, but probably there was no interpreter, so the parents didn't get the information clearly and understood their child was ‘infected,' when we all know that Down syndrome is not the result of infection."

Regardless of what language parents speak newborns and infants with Down syndrome need medical attention. "Language barriers frequently lead to misunderstanding and misinformation on the diagnosis from the very beginning," she said.

Access to the medical appointments can be another hurdle for individuals whose legal status prevents them from obtaining a drivers license.

"Transportation is a huge barrier in Georgia and many parts of the country," she said. "In our support group we pay for taxis for the mothers to come to the group meetings. Just last week, for our monthly meeting, I spent $320 on taxis."

Diaz's son is now 12 and is being taught by a tutor at home. As he needs to receive oral, motor and behavioral therapy, Diaz is trying to find a school that can provide such services. Despite her son's health issues, he has been able to swim and play basketball, she said.

"When I meet other parents who have recently found out their child has Down syndrome, I show them pictures of my son and tell them about his accomplishments and how he has overcome difficulties," she said.

"My son is a gift from God", Diaz said. "He is my teacher."

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Isaac Itman is a writer for the OMHRC. Comments? E-mail: info@omhrc.gov

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Links

Genetic Screenings for Birth Defects [PDF, 98KB]
http://www.asrm.org/Patients/FactSheets/genetic_screening.pdf

National Down Syndrome Congress
http://www.ndsccenter.org

National Down Syndrome Society
http://www.ndsccenter.org

Parent Training and Information Centers and Community Parent Resource Centers
http://www.taalliance.org/centers/index.htm

The Federation for Children with Special Needs
http://fcsn.org/index.php

Down Syndrome Association of Atlanta
http://www.atlantadsaa.org/

Massachusetts Down Syndrome Congress
http://www.mdsc.org/

Parents Helping Parents
http://php.com/

KidsHealth
http://www.kidshealth.com/parent/medical/genetic/down_syndrome.html

Down Syndrome Association of Los Angeles
http://www.dsala.org/staff.htm

California Department of Developmental Services
http://www.dds.cahwnet.gov/

The Buddy Walk
http://www.buddywalk.org/

National Association for Down Syndrome
http://www.nads.org/

U.S. Department of Health and Human Services- Administration for Children and Families
http://www.acf.dhhs.gov/

University of California Riverside SEARCH Program
http://www.education.ucr.edu/

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What Causes Down syndrome? Down syndrome is most often caused by trisomy 21. Trisomy 21 means that each cell in the body has three copies of chromosome 21 instead of the usual two copies. Down syndrome can also result from an extra copy of chromosome 21 in only some of the body's cells (mosaic Down syndrome). Source: NIH

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Resources National Down Syndrome Society Affiliates Directory of Down syndrome Internet Sites Down syndrome Articles Let's Walk Together! Fundación Iberoamericana Down 21- In Spanish

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Information about Down syndrome Down syndrome Online National Library of Medicine National Dissemination Center for Children with Disabilities American Academy of Pediatrics

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Information about Developmental Disabilities National Institute of Child Health and Human Development March of Dimes American Academy of Pediatrics

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Amniocentesis Amniocentesis is a diagnostic procedure performed by inserting a hollow needle through the abdominal wall into the uterus and withdrawing a small amount of fluid from the sac surrounding the fetus. The test can detect chromosomal disorders such as Down syndrome, structural defects such as spina bifida (open spine, where the vertebrae fail to close), anencephaly (a condition in which the brain is incomplete or missing), and many rare, inherited metabolic disorders. See more here.

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