Mary Rios quickly realized the mom speaking to her on the phone in Spanish had hit a familiar roadblock.

Like many parents who have a child with disabilities, the mother couldn’t access care she needed for her 8-year-old son with developmental delays. Her son could not be left unsupervised, and she needed the state to help pay for home care for him when he was not in school. The state denied her request.

Rios was pretty sure she knew what the problem was: a health and social service system so complex that most parents struggle to understand it, coupled with the added difficulty of being a monolingual Spanish speaker. 

“If people that speak English have a difficult time accessing either health care or other services, can you imagine either monolingual communities or people that have difficulty in understanding or speaking the English language?” said Rios, a senior advocate specialist with Disability Rights California, a nonprofit organization that advocates and litigates to protect the rights of people with disabilities in the state.

California is one of the most racially diverse states in the nation. Almost half — 44 percent — of California residents speak a language other than English at home, most often Spanish, according to 2022 data from the U.S. Census Bureau. People with limited English proficiency are at higher risk of experiencing poor health and of going without health insurance, partly due to challenges in accessing and communicating information about health care. And because people of color are more likely to speak languages other than English, communication barriers can exacerbate existing racial and ethnic health disparities. 

These challenges are further magnified for families caring for children with disabilities. California’s health, social services and education systems for kids with special needs are notoriously complex to navigate, even for native English speakers. Families may benefit from reaching out to a parent support or legal-aid organization that can provide navigation, advocacy or legal help in their language. 

Families of children with disabilities “need to know about their rights to get the services and supports,” said Maria Fernanda Iriarte, a senior attorney with Disability Rights California. “If you don’t know what your rights are, for example the right to appeal or to a second opinion, you may not get what you want because you don’t know.”

The California Health Report spoke with disability rights experts and parent advocates about what families who speak a language other than English need to know about their rights when accessing health care and special education services, and tips on how to advocate for themselves.

Here are some key things to know:

• You are entitled to receive translations of medical documents. If you speak Spanish, or another language that is widely spoken in your region, your health plan must provide you with translated written materials. These include standard letters and notices, your benefits handbook, notices of changes to your health care benefits, and notices on how to file a complaint or file an appeal.

• You are entitled to an interpreter, for free. By law, when you visit a hospital, primary care doctor or specialist, or seek other medical services such as lab work or physical therapy, you are entitled to an interpreter at no charge. This may be provided in-person at the medical office, over the phone or via video-conference. It can help to bring along a trusted friend or family member who speaks English and can interpret for you as well. But keep in mind that this person is likely not trained in medical translation and could miss or misinterpret key information. 

• Ask ahead. It’s a good idea to tell the doctor or office staff ahead of your appointment that you’ll need an interpreter, so they are prepared. Or look for a doctor’s office where you know staff speak your language. Also, ask your doctor’s office to make a note in your medical record (or your child’s) that you need interpretation. 

• Print out an “I Speak” card. The California Department of Social Services has cards in various languages that you can print out and bring to the doctor’s office to ask for interpretation. Find them here: https://www.cdss.ca.gov/inforesources/forms-brochures/translated-forms-and-publications/i-speak-cards

• Get help filling out paperwork. People with disabilities or with limited English proficiency have a right to request in-person assistance to complete paperwork for Medi-Cal and some other programs. People can also request forms and help in one of 19 languages, including Spanish and Chinese. Those with disabilities can obtain free help from a qualified sign language interpreter and written information in other formats such as large print, audio or accessible electronic formats. 

• Communicate with your child’s doctor. Sometimes parents hold back information about their child’s disability because of feelings of shame or because they think it’s not important. But the doctor is your ally, especially when it comes to seeking services to help your child.  Not only can the doctor suggest and connect you with options for your child, they may also be asked to verify information you put on forms requesting services such as in-home care, Fernanda said. If you don’t tell your doctor what’s happening with your child, they won’t be able to verify it on the forms.

• Don’t be afraid to speak up. Nicole Shaddox-Ramos, a program manager with the parent support group Parents Helping Parents, encourages parents to know their rights, ask questions and request information they can understand, even if it sometimes feels uncomfortable. Preparing questions in advance, using translation tools and following up in writing can help, she said. “Parents should know that it is okay to ask questions, gather as much information as possible, and take the time necessary to ensure understanding,” she wrote in an email. “Be informed of your rights and know who can help with resources. Reach out to organizations that work with families that have children with disabilities, such as your local parent training and information centers, family empowerment centers and family resource centers.”

• Know the facts about public charge. Many immigrant families worry that applying for medical and social service programs will put their status in jeopardy or prevent them from becoming citizens in the future. This is not true for most programs, including Medi-Cal, Cal Fresh, Covered California, County Health Services, In-Home Services Supportive Services, public housing and Section 8, and WIC (Women, Infants & Children). 

• Know your rights when it comes to special education. As with health care, parents with limited English proficiency are entitled to receive information related to special education services for their child in a language they can understand, Shaddox-Ramos said. This includes all notices, evaluations, informed consent forms and individualized education program (IEP) documents. Parents can also request and receive language assistance services such as interpretation and translation during meetings and discussions. Additionally, evaluations and assessments must be culturally and linguistically appropriate, Shaddox-Ramos said.

• File an appeal. If you are denied a service by your health plan, ask for a “notice of action” in your preferred language that explains why you were denied and provides instructions on how to appeal. (This notice should be provided automatically, but sometimes you have to ask for it, Rios said.) Read the sections on how to file an appeal or grievance carefully and file before the deadline. Keep a record of any interactions and get information in writing. If you need help, seek the support of a parent advocacy group or legal aid organization in your area.

Places to get help:

• Parents Helping Parents offers support and information for parents caring for children with disabilities in English, Spanish and Vietnamese. This includes online information on hundreds of topics, webinars and access to support groups. For parents in the Silicon Valley, they offer one-on-one phone support from trained family resource specialists who can answer questions and help find resources. For general information visit php.com, call 408-727-5775 or 855-727-5775, or email info@php.com

• Support for Families offers free resources, events and parent-to-parent support for families in the San Francisco Bay Area, including in Spanish. Find out more at supportforfamilies.org or call 650.688.3625.

• The Disability Rights Education & Defense Fund offers parent training, education and advocacy for families of children and young adults with disabilities throughout Northern California. Visit dredf.org/special-education/students-k-12, call 800-348-4232 or email iephelp@dredf.org

• Parent support centers across the state and beyond. These directories list organizations that support families of children with special needs throughout California.
  • Center for Parent Information & Resources (For families of infants, toddlers, children and youth with disabilities, from birth to age 26)
  • Family Empowerment Centers (For families of children and young adults with disabilities, between the ages of 3 and 22 in California)
  • Family Resource Centers Network of California (For families of children ages 0 to 3)

• Health care complaints. If you have trouble getting the language services you need when seeking medical care, the first step is to contact your health plan. Look for your plan’s member services phone number on your membership card. You may also be able to file a complaint on the plan’s website. If you aren’t satisfied with the plan’s response or don’t hear back within 30 days, you can call or file a complaint online through California’s Department of Managed Health Care’s Help Center, which provides assistance in many languages.

• Legal aid. There are numerous nonprofit organizations throughout the state that provide free legal assistance in a variety of areas, including health care. Use this directory to search for a legal aid organization near you. 

This story was produced in collaboration with Alianza Metropolitan News.