Plain Language Summary – Accessing Services for Individuals with Developmental Disabilities: Cultural and Linguistic Diversity
Developmental disabilities are conditions that affect an individual’s physical, intellectual, and behavioral abilities throughout a person’s life. Families raising a child with a developmental disability face many challenges when accessing services. Ethnic minorities face more difficulties when trying to access disability services. This is because ethnic minorities do not always have enough knowledge about community resources and service providers do not always speak their language or understand their culture.
Ethnic minorities tend to have less knowledge about disabilities and services available to their families. Based on the lived experience of the original fact sheet (link below) author, this is because of how Hispanic/Latino cultures view disabilities. Typically, in Hispanic/Latino cultures a person’s functional skills need to be severely limited for it to be considered a disability. The author’s parents told them that they did not know what a developmental disability was. It was not until their little brother’s doctor explained it that they understood he had Down syndrome.
Their parents knew Down syndrome would cause their brother physical health problems. However, they were not aware of cognitive and social effects. As their brother grew, they began to see how he would face challenges other children did not.
They relied on the school system and government funded resources, but they did not know who to talk to or where to go. This is common for families of those with a disability, but it happens more with ethnic minorities. Since minorities face more challenges accessing services, they may go long periods of times before finding out their child has a developmental disability. Ethnic minorities are also under diagnosed for developmental disabilities.
Addressing the problem:
- Service providers can find resources in Spanish and English here to give to parents (Center for Disease Control and Prevention). This helps families better understand diagnoses.
- Service providers can explain diagnoses in plain language. This can help families understand the effects of the diagnosis on their family.
- Service providers can have a list of local support groups for families. These groups help families to process and learn about available resources together.
English is a second language for many ethnic minorities who have come to the United States from all over the world. This can make it difficult to access disability resources. Some Hispanic/Latina mothers feel they do not understand necessary information because of communication barriers. They felt topics were not explained to them as much as for other people. The author’s mother also had this experience when a translator was not available. She often left meetings with service professionals feeling unsure of what to do for her son.
It is difficult to access services if no one speaks the person’s first language. A person’s language and location can make it especially difficult. This was a challenge when the author’s family moved from California to Utah. Language barriers cost their brother services that could have improved his quality of life. Even when ethnic minorities do access services, these barriers may make it too difficult to use services correctly.
Addressing the problem:
- Resources should be provided in various languages to help ethnic minority families better understand diagnoses. Websites like respectability.org can help families make sense of what a diagnosis will mean for their lives.
- Providers can use translation services to help families. This can help them understand terms and process what changes may occur in their lives.
A major barrier for ethnic minorities accessing and using resources is ethnocentrism. Ethnocentrism is an attitude that a person’s own culture is more important than someone else’s. Ethnocentrism happens when people do not understand and accept other cultures. This suggests that providers may not understand the cultural experiences of those they are serving.
The United States has standards (National CLAS Standards) to urge healthcare professionals to be aware of other cultural practices and beliefs than their own. One vital standard healthcare professionals need to follow it to be responsive of other cultures in order to provide quality care.
In Hispanic/Latino culture, family involvement is important. When parents feel that providers ignore their “parental expertise”, it can negatively affect their relationship with the provider and their child’s well-being. The author’s parents experienced this many times with the school system. When they expressed that speech classes could help their brother communicate with others the school faculty did not value their thoughts and said “it would be a waste of resources.” It took a 2-year battle with the school for their parents to get documents saying speech therapy would help their brother. The school’s unwillingness to work with my parents cost their brother years of improving his communication.
Discrimination is another barrier for ethnic minorities accessing services. Discrimination is when people are treated unfairly, because of their race, sex, sexual orientation, gender identity, ethnicity, age, disability, or another minority status. This contributes to ethnic minorities being referred less to disability services by professionals.
Addressing the problem:
- Service providers can find helpful tools for increase their understanding of other cultures here. (University Centers for Excellence in Developmental Disabilities)
- Providers should become familiar with how developmental disabilities are understood in other cultures. Wenqi Du, of LEND Illinois outlines important considerations here.