A Lifeline for Families of Children With Special Health Care Needs

By Gabby Benitez, Kristen Golden Testa and Nick Lutton

Nine months after the start of a national effort to renew Americans’ Medicaid coverage, a tidal wave of people, including almost 200,000 children in California from June through October last year, lost their coverage – and an untold number may be joining them. Most disturbingly, this includes children with special health care needs who may rely on coverage as a lifeline, nearly 40% of whom rely on Medi-Cal (California’s Medicaid program).

During the COVID-19 public health emergency, families’ Medi-Cal coverage was protected: families did not have to renew their eligibility and stayed continuously covered. But now state programs are tasked with a massive undertaking to “unwind” this protection.

This unwinding has led to challenges for all parents, including parents/guardians of children with special health care needs. In October 2023, The Children’s Partnership and Family Voices of California – a statewide collaborative of parent-run centers working to ensure quality of health care for children with special health care needs – partnered to conduct a survey of Family Voices members.

We received responses from 238 parents of children with special health care needs about their experience with the Medi-Cal renewal process. According to the survey respondents, the biggest challenge was complications with online renewals, followed by confusing or unclear instructions, or not receiving or losing a renewal packet. Some 38% of survey respondents who requested material in their preferred language did not receive it. These renewal challenges can become barriers to continued coverage. Currently, 90% of all Medi-Cal disenrollments are due to these types of “procedural” reasons.

Falling behind

Of those who were able to renew, only one in five (21%) of respondents’ children were automatically renewed without having to submit any forms or documents. That’s far lower than the statewide average of 43% of children being automatically renewed. With far fewer children being automatically renewed, more children with special health care needs are at risk of unnecessarily losing coverage.

About one in five families (21%) reported their children losing coverage. (Another 21% lost coverage temporarily but regained their coverage after a short gap.) This is shockingly high compared to the statewide average disenrollment rate for children (14%). The survey results also revealed that Native American children with special needs were more likely to lose coverage compared to other racial/ethnic group respondents. (Black children had a higher rate of losing coverage temporarily but then recovering it after a period of time.)

While the state wants to measure success based on how disenrollment rates compare to pre-pandemic disenrollments, we know these numbers mean a devastating loss of coverage for families and children.

Wide-ranging effects

Parents have plenty to say about this. During a recent focus group discussion with parents/guardians, The Children’s Partnership sought to lift the voices of families with children with special health care needs and uncover the impact gaps in coverage have on them and their children. Several parents expressed frustration over the Medi-Cal renewal process. Many of them didn’t know they had lost health coverage until they arrived at medical appointments. One parent with a child with special health care needs who lost coverage said she had to beg a hospital to admit her child so he could receive life-saving medication.

“We couldn’t get the medication. I was seriously crying, calling every doctor … back and forth to the hospital, because he was about to run out any day,” said a female parent/guardian of color with a child with special health care needs from Fresno. “He needs it to live.”

That’s just the tip of the iceberg.  For families with children with special health care needs, even short gaps in coverage can lead to crushing financial hardships.

“It impacted my credit score because now I have that medical debt,” said a female parent/guardian of color of a child with special health care needs.

Stable coverage for children, particularly children with special health care needs, is critical to a child’s well-being and impacts their families’ financial stability. Even short gaps in coverage can lead to delays in early detections and early interventions.

Medi-Cal also allows a family member to be a full-time caregiver for their children with special health care needs. As part of In-Home Supportive Services (IHSS), these caregivers are paid to provide this care. The loss of Medi-Cal coverage for a child can derail an entire family’s economic situation, especially when the person providing in-home care is unable to work due to their child’s health care needs.

The time is now

It’s worth noting that California has been taking the right steps by adopting federal flexibilities to automatically renew more families, simplifying the renewal process and mounting large-scale outreach campaigns. Still, too many are falling through the cracks due to procedural reasons. In fact, California has the fourth-worst procedural disenrollment rate in the nation.

Looking ahead, there is plenty of work to be done.

California must hit the pause button on procedural disenrollments until the bottleneck issues, like long call wait times, can be resolved. In addition, outreach and education are needed so parents know that, because children’s income eligibility for Medi-Cal is far higher than that of adults, their children likely still qualify for Medi-Cal even when they get a wage increase or gain employer coverage for themselves.

Children demonstrably benefit from the continuous Medi-Cal coverage protection offered during the pandemic. That is why permanent continuous coverage protection was enacted to protect young children on Medi-Cal in the state’s 2022-23 budget. However, before it can even start, the governor needs to fund and greenlight the policy. That’s why The Children’s Partnership and its partners have asked the governor to do just that in his January 2024 budget proposal to ensure continuous coverage protections can become a reality as soon as possible.

No parent should have to worry about the security of their coverage when they are taking their sick child to a hospital. Protecting a child’s continuity of coverage is essential and can be life-saving. Even small gaps in coverage can have a massive impact.

Gabby Benitez and Kristen Golden Testa are with The Children’s Partnership and Nick Lutton is with Family Voices of California.