Parents of transgender kids say California is ‘unprepared’ as feds cut off their healthcare

When A.W.’s husband lost his job, she was thankful the safety net preserved the family’s access to healthcare. Her eldest son had a team of doctors and therapists at Stanford’s specialty gender clinic; losing that support team, she said, would have been traumatic. The clinic accepted Medi-Cal patients.

Now, California is racing to keep children like A.W.’s son from losing access to gender-affirming care after the federal government moved to cut off funding for those services. State lawmakers are scrambling to approve emergency funding in the last days of the legislative session, even as LGBTQ advocates and parents argue California had months to prepare for the change — and may still fail to prevent a gap in care.

This month the Centers for Medicare and Medicaid Services finalized a rule prohibiting federal reimbursement for gender-affirming care for minors. It takes effect Oct. 13. Roughly 1,500 transgender and gender-nonconforming children on Medi-Cal could lose access to puberty blockers, hormones and related care if the state doesn’t act.

Lawmakers want an emergency $10 million to replace the lost federal funds. The money would buy time for the state to create a separate funding pathway for transgender kids that complies with federal rules, though the Department of Health Care Services says that could take up to a year.

A funding pathway would keep state dollars separate from federal dollars, and allow Medi-Cal children to keep receiving care without disruption. Without it, transgender and gender-nonconforming youth could lose access to ongoing medical treatments.

“They’re low-income Californians who need support arguably the most, and Medi-Cal is their lifeline to access that care,” said Assemblymember Chris Ward, a Democrat from San Diego and chair of the LGBTQ caucus, which is fighting for the money. “We need to stand up for them.”

But some LGBTQ organizations and parents, including A.W., doubt California’s Medi-Cal agency can stand-up a separate program for transgender kids in under six weeks. They also say they feel misled by state leaders after months of budget negotiations.

For the past eight months, advocates and medical organizations had warned California’s Medi-Cal agency that the federal government intended to cut off funding for gender-affirming care for minors. They believed state leaders had set aside money to prepare for that outcome during June budget negotiations, but later learned officials did not follow through.

“I thought that when we took our kids to Sacramento to meet with members of the Assembly and Senate that we were advocating for a backfill that would cover kids on Medi-Cal who would lose those federal dollars,” A.W. said. “I’m really disappointed that our coalition spent so much time and effort on something that I’m not sure we’ll reap the benefits of, and that sucks.”

CalMatters is identifying A.W. by initials only to protect the identity of her two children, both of whom are transgender.

Why California wasn’t ready

In December, the Trump administration published preliminary rules targeting payments for gender-affirming services for young people.

Though the rules weren’t finalized until August, advocacy groups spent months with state officials negotiating for a program that would protect transgender children on Medi-Cal, according to budget letters and presentations obtained by CalMatters. They wanted the state to set aside $1 million to create a separate Medi-Cal funding pathway and to use other money to bolster access to care.

Many believed the state had done exactly that in June, when the budget included two pots of money totalling $56 million for gender-affirming services and reproductive healthcare. After the budget passed, advocates learned health and budget officials for Gov. Gavin Newsom had removed language that would have ensured some of the money would be used to create a separate, state-only Medi-Cal funding program for transgender children.

The Department of Health Care Services, which administers Medi-Cal, did not answer questions about why the money wasn’t earmarked for Medi-Cal and whether there would be any gap in services for transgender children. It referred CalMatters to the Department of Finance. A finance department spokesperson said the administration was “aware of this particular issue” but had no updates to share.

Ward said the budget, which addressed California’s fourth consecutive deficit, didn’t have “a nickel to spare,” and because federal rules hadn’t been finalized at the time, the Medi-Cal funding commitment wasn’t locked in.

On social media, the California Department of Health and Human Services pointed to the $56 in the budget, saying it remains “committed to ensuring all people have access to the medically necessary, evidence-based care that will allow them not only to survive, but thrive.”

Arne Johnson, an organizer with Rainbow Families Action, called that statement misleading. “In the end, not a penny of it is going to backfill Medi-Cal at all,” Johnson said.

The money will instead fund infrastructure investments for transgender health clinics as more care gets pushed out of hospitals and into primary care settings under federal threats, and will aid other groups that have lost federal funding, including military families and veterans, according to two sources familiar with budget negotiations.

Many advocacy groups said California’s long-term investment is welcome, but argue the state failed to protect the immediate care of vulnerable children.

“It’s been very frustrating to see California say in many words that it’s supportive of trans people, and be so unprepared for something we all knew was about to happen,” Johnson said.

Laura Sheckler, budget and policy director at the California Primary Care Association, which represents clinics, said the state will have a challenging time creating a program by the time the federal cuts are expected to begin.

“The bigger question is how is California going to ensure that whatever they set up is going to be available on Oct. 13 when these rules go into effect?” Sheckler said.

For one family, Medi-Cal was the safety net

A.W. and her family are bracing for that deadline and what they anticipate will be an inevitable loss of care.

Discovering that her first child was transgender prompted a personal reckoning for A.W. She had spent most of her career working in conservative politics for prominent Republican leaders. At home, though, her first child showed signs of gender dysphoria even as a toddler, pulling bows out of his hair, crying when forced to wear a dress and asking why he couldn’t stand up to pee.

A.W. and her husband chalked it up to tomboy behavior.

“We had zero education or inkling that he might be trans, but as we started educating ourselves and learning more, we realized that he at a very, very young age was verbally communicating with us who he is,” A.W. said.

After the family moved from Virginia to the Bay Area for work, her son, who was 8 at the time, started seeing a therapist. A year and a half later he received his first puberty blocker, and has continued to see therapists and endocrinologists at Stanford ever since. Medi-Cal allowed her son to keep seeing the same doctors when the startup where A.W.'s husband worked went under two years ago.

“I say that (my son) has really opened me up and made me see things and accept things that I didn’t understand,” A.W. said. “For me, it was a huge transformation.”

Just last year, A.W.’s second child also came out as transgender. It was surprising, but both parents say part of parenting is loving their children unconditionally.

Either child losing healthcare — even temporarily — would be devastating, but for her eldest, now 15 and giving himself testosterone injections weekly, the consequences could be permanent.

“A gap in care for my son is a terrible thing. He doesn’t take testosterone and what happens? He would be forced to medically detransition,” A.W. said. “It’s unacceptable that the state wasn’t prepared.”

Supported by the California Health Care Foundation (CHCF), which works to ensure that people have access to the care they need, when they need it, at a price they can afford. Visit www.chcf.org to learn more.

This article was originally published on CalMatters and was republished under the Creative Commons Attribution-NonCommercial-NoDerivatives license.