Listening to and Learning from Latino Parents of Children with Special Health Care Needs in North Carolina: Practical Recommendations for Service Providers

"[Y]ou might think people who speak Spanish do not get autism..." - Latina mother who struggled to find information in Spanish about her child's condition.

Many Latino immigrants face a number of obstacles to obtain health services including language, transportation, fear (due to immigration status) and lack of health insurance. For a Latino parent of a child with special health care needs, additional barriers exist when trying to find information and services for his/her child's specific condition. In this issue, we provide some recommendations for service providers to better serve Latino families with children with special health care needs.

The information in this issue is derived from a recent qualitative study by the North Carolina Healthy Start Foundation and the North Carolina Division of Public Health (Women's Health Branch) on Latino families with children with special health care needs. Twenty-two families with children with special health care needs were interviewed. We were interested in finding answers to the following questions:

• How do Latinos talk about, think about and understand disability?
• In what way are understandings of disability informed by culture?
• How and with what expectations do parents of children with special health care needs access services for their children? What barriers to health service access and utilization do Latinos face?
• What are the practical implications of Latino beliefs surrounding disability for service providers?

The full report, Latino Narratives of Disability in North Carolina: Listening to and Learning from Latino Parents of Children with Special Health Care Needs, can be viewed here.

Views of Disability Depend on Experiences

The findings of this study warn us against the tendency to homogenize Latinos. Similar to other racial/ethnic groups, the varied experiences of Latinos shape their points of view and actions. In the case of disability, Latina mothers of children with special health care needs share many views about disability that differ in many ways from those of Latinos without children with special health care needs.

Mothers in the study did not bring up the themes of pity, shame and punishment which were discussed in focus groups with Latinos without children with special health care needs. Among the most common themes we found among mothers was a strong desire to ensure that their children’s needs were being met. They were strongly motivated despite fear due to immigration status, language difficulty, financial hardship and perceived racism. Lack of information about community resources and difficulty in accessing services were common challenges. Some specific themes which surfaced in the conversations with mothers are summarized below:

1. Mothers want to understand their children’s conditions. Other studies have shown that Latino children are often diagnosed late and one possible explanation offered is that Latinos accept a broader range of “normal” behaviors in their children. The mothers we interviewed did not dismiss that their children may have special health care needs; instead, they worked hard to find answers to their children’s specific condition.
2. Resistance towards labeling children. The mothers participating in the interviews wanted to know how to help their children. Yet, they did not define their children by their disability. They preferred to talk about their children’s strengths and down play their limitations.
3. Expertise of professionals is highly valued. Family is very important in Latino culture and, in some cases, bringing in outsiders to deal with a “family matter” can be frowned upon. Yet, in the case of the mothers in the study, obtaining help for their children from professionals was a high priority. This was not always easy and mothers had a high learning curve (for example, not understanding their children’s condition completely).
4. Mothers see their role as important in advocating for their children and locating services. Mothers perceived a lack of services but they did their best to pursue possible leads. Many also saw advocacy as part of being good mothers. Advocacy for them included searching for resources, sharing information with others, speaking with school administration and teachers, and educating others about their children’s needs. Many also expressed that they needed to advocate for their children in partnership with professionals.
5. Support groups can be great help. There is a commonly held notion that Latinos do not value or attend support groups. For mothers in an autism support group, the existence of the group meant a source of empowerment and information. Through the support group they were able to locate resources and become good advocates for their children.