It is important to attend to families with children with disabilities.

The disability of a family member, particularly a child, places parents in situations where they may experience stress and some other mental health problems.

This may be due to the intensity of the care their son or daughter requires, the search for care and services, and also financial concerns, as many times caring for a person with a disability is a full-time job.

Daniela Rodriguez, a Radio Bilingüe reporter and UC Berkeley Fellow, shares some stories and resources to help families with children with disabilities get ahead.

DANIELA: Families of children with disabilities face a number of significant stressors that often lead to mental health issues, such as depression and anxiety. These parents are also more vulnerable to physical health issues. Mariza Ochoa, Executive Director of Escuchen Mi Voz, shares with us what those specific stressors are for Latino parents in this situation.

MARIZA: When you don’t know about the disability and you don’t know about the service, that creates a lot of anxiety in families, a lot of uncertainty about what to do, I don’t know where to go, I don’t know where to turn.

DANIELA: In addition to the lack of language, Mariza explains that cultural barriers can also delay needed services for families.

MARIZA: And what about Latino families? Because we don’t break down the information that is needed for the child to actually have a diagnosis, so it delays the diagnosis and delays services for them.

DANIELA: The executive director of Escuchen Mi Voz, an organization that provides support to Latino parents of children with disabilities, explains that navigating the government systems is also a big concern for Latino parents. Something she herself, as the mother of a child with autism, has had to deal with.

Mariza: I encountered as an immigrant the difficulty of being able to navigate the systems in this country. We have a country where culturally, we don’t have the opportunity of a government system where you can go and ask for a service.

And if that service is denied, you can go to an appeal or an under process. Going through all those systems, whether it’s the school district, regional centers or generic aids, it’s very difficult to navigate one.

DANIELA: Like Mariza, Marissela Moroyoqui, is a mother who has also been affected by these same difficulties in advocating for her son Alexander, who was diagnosed with Spina Bifida…

MARISELA: The spina bifida director told me that my child was not going to take any steps.
For me it was very depressing because since he was born I had been taking him to therapies and I was very excited to put him in his splints. So when they tell you “no, you know what, your child is not going to take any steps”, you get depressed, I even took the splints off, they stopped the therapies themselves. But in the same process my husband and I reacted and we made him some bars with PBC tubes and we stuck it on the wall, my child in the middle of the pandemic and without therapy began to take steps. Then I made an appointment with the spina bifida doctor and told her my child is walking…. to return the therapies.

DANIELA: Organizing to overcome cultural barriers and bureaucratic systems in seeking the best help for her children,,,,, has not been easy. Mariza points out that at Escuchen Mi Voz there are resources available to support parents in navigating those obstacles and alleviating stress.

MARIZA: We have the emotional support for adults and we have emotional support for youth as well. We also have the promotoras program, where we basically help them and hold their hand to help them get the service that they need.

DANIELA: In closing, Mariza mentions that in the Central Valley there are few local organizations that focus on the health of parents of children with disabilities.Although they can seek help through doctors or insurance, the process has drawbacks, and some therapists have reported parents’ emotional stress to Child Protective Services (CPS), which generates distrust.Mariza emphasizes the urgent need to create more supportive spaces that better understand the experiences of these parents.

Thanks to Daniela Rodriguez, Radio Bilingüe reporter and UC Berkeley Fellow, for this report.

It is very important to attend to families who live with a person with an intellectual or developmental disability and associated mental disorder, offering strategies that increase their self-care and allow them to conserve respite time and reconcile social, work and personal relationships.

Remember that Escuche Mi Voz is based in Stockton, California.