An unknown number of parents across the state are using medical cannabis to ease their children’s repeated seizures, treat the symptoms of autism or relieve the pain of cerebral palsy. But cannabis is not allowed on school grounds. One North Bay family is hoping to change that.
On January 1 it will be legal for adults 21 years old and over to possess and purchase recreational marijuana. So you might think that’s the end of the story on access.
But there’s a hidden constituency that will still face barriers when it comes to marijuana. They’re kids who rely on medication made from cannabis.
No more ambulance trips
Four-year-old Brooke Adams is taking her morning medicine. Her mom, Jana Adams, squirts it into her mouth as Brooke sits on the kitchen counter of their Santa Rosa house.
It’s a cannabis tincture with a high ratio of CBD, one of the cannabinoids in the marijuana plant that doesn’t make you high.
Brooke has pale red hair that’s pulled into pigtails. She’s wearing raspberry colored eyeglasses. And she loves hugs.
On this recent morning she reaches for a visitor and beckons: “Huuuug.”
Brooke has Dravet Syndrome — a rare and severe genetic disorder that causes seizures and developmental delays. She’ll live with it for the rest of her life. Adams says Brooke began having seizures at three-and-a-half months old — and they were traumatic.
“She would have hour long seizures,” says Adams. “Every time, we’d have to call 911 to have her [taken by] ambulance to the ER, to load her up with all kinds of drugs.”
The longest lasted three hours.
By the time she turned one, Brooke was taking a hefty list of prescribed medications.
First up was Keppra. Next, phenobarbital. Then came Trileptal, eventually swapped out for another. On top of all that, Topamax. Four at once.
Those medicines are meant to prevent seizures — but Adams says they didn’t work for Brooke. As for stopping the seizures once they started — that required another drug, known as a “rescue” medication.
Whenever they administered it, Adams says, Brooke “would be intubated because her breathing would slow down so much.”
Hoping for another way, Adams connected with a nationwide community of parents using cannabis to treat their kids’ seizures.
And a local doctor issued Brooke a medical marijuana card when she was just 15 months old.
Now, Brooke takes that daily CBD tincture and a rescue drug made of cannabis oil that’s high in THC. (That’s the best-known cannabinoid in the marijuana plant, the one that does get you high.)
Adams says those drops of THC oil dribbled between Brooke’s gums and teeth tend to stop her seizures within three minutes. Her doses come in little vials. Wherever she goes, they go.
Brooke takes fewer prescription meds now, and her mom says she has fewer seizures. But the main change is that those long ones, known as status seizures, are really infrequent.
That means no more ambulance trips with a breathing tube.
“Her last status seizure was last August,” Adams says, “and before, she was every five weeks to the day.”
Last year, Adams met with her local school district, Rincon Valley Union, to plan for preschool. There’s a federal law — called the Individuals with Disabilities Education Act — which mandates that kids receive a “free, appropriate public education in the least restrictive environment.”
That means districts need to make accommodations for kids like Brooke.
But just before the summer of 2016, the district told Adams: Those vials of THC oil that are always with Brooke? They’re not allowed at school.
“They said here’s all the things that you could have,” Adams recounts, “but well, she can’t be on campus so you’ll have to just have her at home.”
But homeschooling is not what Adams thought was most appropriate for her daughter. And she knew the law. If the district couldn’t accommodate Brooke, they’d have to find another school that would.
She told the district: “She needs to go to a private school if you can’t have her.”
The district got on board. Adams had to call dozens of private preschools to find one that had space and would accept Brooke with her seizures — and cannabis meds.
The district pays for that placement. And a lot of other accommodations, like speech therapy, occupational therapy, physical therapy, and adaptive physical education.
But Adams knew the problem wasn’t going to go away. And that would be an issue after preschool.
So, Adams says, “that’s why we’re pushing 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.”
Pushing to change the law
That something is a law, one that would allow Brooke and other kids like her to be in public school with their cannabis meds.
Adams hired Joe Rogoway, a cannabis-industry attorney, to help her press for that.
The twist? The school district is on board with the idea.
Cathy Myhers, Assistant Superintendent for Student Services for the Rincon Valley Union School District, can’t discuss the cases of individual students. But she says that, generally, federal law requires her district to offer “free and appropriate” public education to kids who are “identified as children that have special needs.”
Yet cannabis prohibition prevents that.
“[W]e feel as though our hands are tied,” Myhers says. “If we can’t provide her that rescue medication, we can’t serve her on a public school campus.”
Myhers says her district had never dealt with this kind of situation before. But now, they are. And they’re hearing from other districts with similar dilemmas.
She and other school-district officials have also met with State Senator Mike McGuire, a Democrat from Healdsburg, to see if California can do what a handful of other states have already done.
Maine, New Jersey and Colorado have all changed state law to require school districts to accommodate students who have medical-marijuana recommendations. They all permit a parent, legal guardian, and in some cases a primary caregiver, to administer cannabis medication at school.
Similar legislation is pending in Washington state.
Those state laws could be modified. But there’s another problem: Federal law.
It bars illegal drugs, marijuana among them, within 1,000 feet of any school or school district building.
Myhers says if the district violates that federal law, they risk losing millions of dollars in federal funding.
Myhers says she hopes Maine, New Jersey and Colorado might offer a road map to how they’re “getting around the federal restrictions.”
But it turns out there really is no way around those restrictions — short of a change in federal law. And the 29 states that have legalized marijuana — medical or recreational — already violate federal law.
The states that have passed these school district measures are taking a gamble. They don’t think the feds will act. Colorado’s statute even says school districts can only get out of complying if they “reasonably demonstrate” that they already did — and lost federal funding as a result.
Whether California will do the same remains to be seen.
For now, the workaround is working for Brooke — with the district paying for her to go to private preschool and providing lots of assistance.
Brooke’s school day
On a recent morning, Brooke’s nurse, Yolanda Brindis, arrives at the house at 8 a.m. Rincon Valley Union pays for that one-on-one assistance for Brooke, all day. After some bumps in the road, the district also agreed to send a van to take Brooke to her preschool across town.
Brooke and Yolanda arrive right in time for hugs — and speech therapy in the hall with one of four practitioners who comes to see Brooke every week.
Then, Brooke joins the other kids, for circle time. There’s singing, and imaginary games, followed by snack time.
Getting Brooke into preschool has immersed her in a whole world of other kids. It’s also allowed her mom, Jana Adams, to go back to work as a real estate broker for the first time since Brooke was diagnosed.
But what matters most now for Adams is what comes next.
“My whole goal is to get her to public school by kindergarten,” she says at her downtown office. “We’re closer, but we're still a ways off, and I don't know that we’ll have the bill passed in order for her to go to school on time in August.”
There is no bill yet, just a conversation. But Rogoway, Adams’ attorney, tells me he’ll work behind the scenes to help Adams — and her school district — move legislation forward.
So maybe, Rogoway says, if they’re successful in passing legislation that allows students to take their cannabis meds at school, California’s should be called Brooke’s Law.