How to Make Sure Medically Fragile Children Don’t Lose Health Coverage

Photo by FG Trade/iStock Photo
Photo by FG Trade/iStock Photo

Janna Espinoza shudders remembering the day she and her daughter Coraline, then 8, showed up for an appointment in Salinas with their trusted pediatrician and were turned away because the child no longer had the right health insurance.

Coraline, who has cerebral palsy, epilepsy and other serious conditions, relies on the safety-net health insurance program, Medi-Cal, for a range of health services. But in 2020, at the height of the pandemic, Espinoza and her family of four lost their housing in Monterey County and had to move in with Coraline’s grandmother in San Benito County. The triggered a change in jurisdictions for Coraline’s Medi-Cal, and the child lost access to the providers she depends on, including the pediatrician.

“It was devastating,” Espinoza said. “For the kind of care that our kid needs, to not have a pediatrician that understands her and her unique health care needs, that’s huge. That was a catastrophic loss.”

It took Espinoza months of phone calls with government and health plan officials, and ultimately moving back to Salinas, to get Coraline enrolled again in the Medi-Cal coverage she needs. Now, Espinoza is worried another Medi-Cal administrative hurdle could lead to similar headaches for families like hers. During the pandemic, California and other states didn’t require people to renew their membership in Medi-Cal, known nationally as Medicaid. That changed on April 1, when California began sending out renewal packets once again.

Renewals will be sent out in batches, based on the month in which beneficiaries originally applied for Medi-Cal. Everyone’s renewal date is different, and due dates will be stated on the form. Over the next year, as the renewal process continues, millions of Californians could lose their Medi-Cal coverage if they fail to fill out the forms correctly or do not receive them. A report in March by the state Department of Health Care Services, which oversees Medi-Cal, estimated that between 2 and 3 million Californians may be dropped from the program.

Espinoza is concerned that many families in her community could be among those who lose coverage. She is now the chair of a family advisory committee for Monterrey County’s Medi-Cal managed care plan. Although she feels confident handling Coraline’s renewal because of the experience she has navigating the Medi-Cal system, a lot of families in Monterrey County don’t know how it works, she said. Many also don’t speak English well and have been buffeted by the pandemic and other stressors, such as the recent flooding in the community of Pajaro.

“In my peer group there are so many people with so many things going on. You struggle just to keep your head above the water,” she said. “I am very, very concerned how the redetermination stuff is going to go… There are people that have had to rework their living situations in the last 2 years for a lot of those different kinds of reasons, and I’m very worried about people getting lost in the shuffle.”

A third of Californians rely on Medi-Cal for health insurance, including nearly 4 in 10 children. People can qualify for the program if they are low-income, or if they have disabilities that require a high level of care. The insurance is a lifeline for many families, especially for those like Espinozas who have a child with disabilities.

Health officials and advocates are urging Medi-Cal beneficiaries to proactively contact their local county Medi-Cal office to update their contact information if it has changed and to be on the lookout for renewal information in the mail. The state is also funding outreach campaigns targeting different communities and supporting health navigators who can help with renewals in various languages and for people with disabilities. Meanwhile, a children’s advocacy group is pushing to fast-track a policy that would give children under age 5 enrolled in Medi-Cal continuous coverage without the need for renewals.

A right to request help

Some Californians may lose their Medi-Cal coverage because of a change in income or other circumstance that makes them no longer eligible. These beneficiaries may instead be eligible for subsidized health coverage through the state’s Covered California insurance exchange.

But other Medi-Cal recipients will be dropped from the program simply because they’ve moved or changed phone numbers in the past three years and counties don’t have their updated contact information, or because they don’t fill out the paperwork correctly, often because they don’t understand it. The forms include 15 or more pages of questions about members living in the household, tax filing status, income and health care coverage. Some ask for details about a recipient’s assets. The length and content of the forms varies slightly depending on what type of Medi-Cal the member is eligible for. The forms come pre-populated with information the member has provided in the past, and recipients are asked to confirm or update it.  

In addition to Medi-Cal renewals, families with children enrolled in a related health coverage program called California Children’s Services will be sent a renewal form for that program. Children’s Services covers treatment, case management, and physical and occupational therapy for children up to age 21 with certain disabilities or diseases such as cerebral palsy, cystic fibrosis, cancer, heart conditions and orthopedic disorders.

“I just can’t stress enough how big of an undertaking this is,” said Alicia Emanuel, a senior attorney with the National Health Law Program, which advocates for the health rights of low-income people.

“We’re concerned about the populations that might fall through the cracks. People with limited English proficiency, people with disabilities historically experienced more administrative barriers to retaining their coverage.”

Forms can be filled out by mail, online, in-person or over the phone. People with disabilities or with limited English proficiency have a right to request in-person assistance to complete their paperwork. People can also request forms and help in one of 19 languages, including Spanish. 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. (See the resources in the box below, or look for contact information for your county eligibility worker and other information on your renewal form.) Although these options are available, many people do not know they can ask for them. 

A copy of the Medi-Cal renewal forms many California families will be receiving in the coming months. Photo by Claudia Boyd-Barrett

‘A matter of life or death’

Wendy Neikirk Rhodes, executive director at Support for Families, which serves families of children with disabilities in San Francisco, said many families are very worried about the renewals.  

“The concern is so high because many times their child’s life depends on medical treatment,” she said. “Their families’ financial viability, their child’s health and wellbeing, all depend on their being able to access the Medi-Cal services that they’re entitled to.”

Advocates are pushing for the state to fast-track a policy enacted last year in California that would allow for continuous coverage of children enrolled in Medi-Cal from birth through 5 years of age, starting in 2024. Mayra Alvarez, executive director of the children’s advocacy organization, The Children’s Partnership, said automatic renewals during the pandemic dramatically reduced the number of children losing access to Medi-Cal.

“We’re hoping to put additional pressure on the administration to move forward with implementation of that policy as quickly as possible,” she said. “Medi-Cal is a lifeline for so many in our community. It’s literally a matter of life or death.”

Meanwhile, as chair of her committee, Espinoza is contributing insights about the needs and challenges facing her community to the local Medi-Cal managed care organization, the Central California Alliance for Health. She said she feels more optimistic about the Medi-Cal redetermination process after hearing about the organization’s plans to proactively reach out to members with information about renewals, including by sending text messages in Spanish.

“I’m glad that there does seem to be a significant amount of effort being put into informing people that this is coming up and that this is something they need to be aware of,” she said. “I’m hopeful.”

HOW TO RENEW YOUR MEDI-CAL COVERAGE

  • Call or visit your local Medi-Cal office to update your contact information, find out your renewal month, or to get help completing your form. Find details for your county’s Medi-Cal office by visiting dhcs.ca.gov/COL. You can also call the general Medi-Cal’s helpline at 800-541-5555, which provides help in several languages, including Spanish.
  • If you have internet access you can update your personal information online by signing in or creating an account at www.benefitscal.com or www.mybenefitscalwin.org.
  • The Health Consumer Alliance offers free assistance over-the-phone to help people struggling to get or maintain health coverage. Call toll free at (888) 804-3536.

Many community clinics and community-based organizations across the state have health navigators and enrollment specialists on site that can help with Medi-Cal applications and renewals, including in Spanish and indigenous languages. To find more organizations offering assistance in a variety of languages, search here, starting at page 9.

This story was produced in collaboration with Alianza Metropolitan News. A Spanish language version of the story is available here.

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