Brooke Adams was diagnosed with Dravet syndrome when she was just 3 months old. The rare and severe seizure disorder often causes developmental delays.
Like a lot of kids with Dravet, Brooke didn’t respond to a long list of heavy-duty pharmaceutical drugs. Every time she had a seizure, her mother, Jana Adams, said, “we’d have to call 911 to have her ambulanced to the ER, to load her up with all kinds of drugs. Her longest one was three hours.”
The rescue medication they tried — to stop her seizures once they started — would often slow her breathing so much she would have to be intubated.
All that changed when the family discovered medical cannabis.
Now, they give Brooke a tincture a few times a day to prevent seizures. That one’s mostly CBD — a cannabinoid in the marijuana plant that doesn’t make you high. Another — rubbed on her gums — stops the seizures once they start. That “rescue medication,” made from the psychoactive cannabinoid THC, works in about three minutes, according to Jana.
“It’s been life-changing,” Jana said of medical marijuana.
Except when it came time to start preschool.
The local public school district — Rincon Valley Union — told Jana that both federal and state laws ban cannabis on school grounds. Violating that federal law can put school districts at risk of losing federal funds.
In January, when I first reported on the Adams family, the district was paying for Brooke to go to private preschool, and for a one-on-one nurse, who was always at Brooke’s side with those little vials of THC oil, her rescue medication.
But Jana wanted her daughter in public school come kindergarten. So she started lobbying her legislators last year “to get to Sacramento and get something passed before the fall, because I don’t know where her placement will be in the fall if she can’t go to public school.”
Last month, shortly before the beginning of the school year, I went back to check on the family. Things haven’t gone quite as Jana had hoped, but there’s been movement on the issue.
Laws in seven other states now allow kids some access to their cannabis meds at school. California is trying something similar with Jojo’s Act. Jojo Jiminez lives in San Bruno, and the 19-year-old suffers from a different debilitating form of childhood epilepsy.
His state senator, Jerry Hill, learned about him last year — and how, in order to get the regular cannabis tinctures that keep the teenager’s seizures in check, “he would have to be removed from school in a wheelchair and by law taken 1,000 feet away from the school where the drug could be administered. And then his mother would have to wheel him back,” Hill said. “It didn’t seem right.”
So he authored a bill that would permit California school districts — but not require them — to let parents or legal guardians administer cannabis meds inside school to kids who have a doctor’s recommendation.
But Jana Adams says that, for her daughter, there’s a hitch. When Brooke needs her THC oil as a rescue medicine, she needs it immediately. Someone who’s already at school would have to give it to her.
“I mean, I don’t know when I’m gonna have to dose her,” Jana said as she and Brooke flip through picture books. “That’s the whole issue.”
Some kids need their cannabis meds on an unpredictable schedule, and parents can’t always be on campus to administer them.
It turns out that’s a problem everywhere. Illinois had to add a last-minute amendment that also allows a “designated caregiver” to dispense cannabis at school. New Jersey did something similar. And early this summer, Colorado tacked “Quintin’s Amendment” onto its law. That allows school personnel to dispense the cannabis meds, or designate someone who can, like a contracted nurse.
But Sen. Hill doesn’t think that will fly in California now. Marijuana is still against federal law, and the Association of California School Administrators lobbied against his bill out of concern that they’d lose federal funds.
Just like the other states, Hill said, California needs a starting point.
So, to avoid having Brooke home-schooled, Jana and her family decided to take the school district to court. The special education hearing was held in late July before Administrative Law Judge Charles Marson. As Jana sees it, the question was: “Are you going to let a sick child take her medication so that she can go to school, or are you going to just keep people at home?”
These types of hearings are usually private, but Brooke’s family petitioned to open theirs to the public in hopes of helping other families. Brooke’s preschool teacher testified about all the progress she made interacting with other kids during her two years there. And Dr. Joseph Sullivan, one of Brooke’s doctors and director of UCSF’s Pediatric Epilepsy Center, submitted a declaration on her behalf.
As for school district officials? They said they’re caught between two federal laws – the one that bans cannabis on school grounds and the one that requires accommodations for special education students. Rincon Valley Union Assistant Superintendent Cathy Myhers told me they want guidance — and some cover.
“As a district we just want a level of protection,” Myhers said. “If the judge tells us we can have a student on campus with their medical marijuana, we feel like, ‘OK, we can do it.’ ”
Marson on Friday ruled that not only can the district do it — it must.
In his 22-page ruling, Marson said that by seeking to educate Brooke at home, the Rincon Valley Union School District had denied her a “free and appropriate public education” in the “least restrictive setting” — which federal special education law requires.
Marson concluded that Brooke was in compliance with state medical marijuana law. Because her mom and her nurse were “authorized by law to possess and use the THC oil as they did, their conduct was exempt from another California statute specifically regulating the presence of cannabis on a public school campus,” he wrote.
As for federal law? Marson called the chance that federal officials would come after the school district “remote” and said the district had already violated federal law for two years without consequences by transporting Brooke to and from her private preschool with her cannabis meds, and “should have reasonably concluded that it could continue to do so.”
The district can appeal the ruling, which applies only to Brooke.
Jojo’s Act is now on the governor’s desk. The governor has until the end of this month to sign or veto it. If he signs, it will help kids who take cannabis meds on a regular schedule — and who have parents or guardians who can come to school to administer them.
Jana Adams called Judge Marson’s ruling a “huge relief” for her family.
She says if Jojo’s Act becomes law, she will still push for an amendment that would help other kids like Brooke.
A version of this story originally aired on KALW’s Crosscurrents