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Moms argue for cannabis oil

Copyright © 2018 Albuquerque Journal

SANTA FE – Lindsay Sledge was there for her daughter.

She’s not a public speaker but, still, she traveled from Albuquerque to the state Capitol to tell the Legislative Health and Human Services Committee a personal and intimate story about her family and the medicine she gives her daughter, Paloma Sledge-Guba, to help her 5-year-old with a severe form of epilepsy called Dravet syndrome.

Paloma Sledge-Guba, 5, said a meek hello to the Legislative Health and Human Services Committee on Thursday as members heard from her mother Lindsay Sledge about allowing medical cannabis on school grounds. She cooed in the background while Sledge shared her experience of using cannabis oil to help mitigate Paloma’s severe form of epilepsy called Dravet Syndrome and advocated for the medicine to be allowed at schools and administered by staff. (Eddie Moore/Albuquerque Journal)

“We moved to New Mexico in a desperate attempt to save her life,” she said.

That medicine is cannabis oil.

As the country and state grapple with the legality, liability and even at times morality of medical cannabis, Sledge was there to share the positive results cannabis oil has had on her family and to advocate for her daughter’s medicine to be treated like any other medicine on school grounds.

“To be clear about what I’m asking, I’d like to see the law changed,” she told the committee on Thursday.

She emphasized that school is one of the few places Paloma gets to feel like any other kid.

But Paloma has not been attending kindergarten because she isn’t allowed to take her medicine on campus.

“It still hurts me she can’t be at school,” Sledge told the Journal.

The mother of three said Paloma frequently asks when she is going to go back to school, especially as Sledge drops off her other children at class each day.

“I tell her I’m doing everything I can,” the mother said, the words breaking as tears formed.

State law right now is very clear that medical cannabis is prohibited on school grounds and on school buses.

For some conditions, medical cannabis is legal in New Mexico, but it remains illegal under federal law.

State Sen. Candace Gould, R-Albuquerque, is currently working on a bill to change state law, according to Sen. Gerald Ortiz y Pino, D-Albuquerque, the vice chairman of the committee.

Ortiz y Pino said he has volunteered to co-sponsor the bill with Gould, who was not at Thursday’s meeting.

The language of the draft mirrors a similar bill in Colorado and aims to address issues like the campus and school bus prohibitions, who is permitted to administer the medicine and whether school districts may opt out.

While the interim committee is able to endorse legislation, a bill would still have to go through the regular legislative process.

Ortiz y Pino told the Journal that based on the committee’s questions and responses on Thursday, “I would imagine they’d endorse it.”

Sledge also said she was hopeful, adding that she felt the representatives and senators were receptive to her story.

“You never know what they’re going to say,” she noted.

The law as it is now resulted in Sledge sitting in the parking lot for hours at Petroglyph Elementary School last academic year so that she could drive Paloma off campus to administer the medicine when the then-preschooler was in need of it.

Even after giving her daughter regular doses, she still waited in the lot. In the event Paloma had a seizure, Sledge had to be on hand to administer cannabis oil immediately.

That oil shortens and de-intensifies Paloma’s seizures that she has had since she was 5 months old, Sledge previously explained to the Journal.

But waiting in her car was a temporary solution.

Now, Paloma should be in kindergarten.

Sledge previously told the Journal that she had requested to send Paloma to school for only half a day of kindergarten, but she said APS told her that’s not allowed. The school district said in May an error was made and Paloma would be allowed to attend half-day kindergarten if her mother chooses, which is in accordance with state law that says full-day kindergarten is voluntary.

This fall, Sledge sat through a three-day hearing as she and her lawyer filed a due process complaint.

Sledge testified and her lawyer argued that Albuquerque Public Schools and the state Public Education Department denied Paloma educational resources and options to which she has a legal right.

Sledge decided to file the complaint so that a hearing officer could decide whether Paloma was given the full range of education she was entitled to under the law, particularly for an option called homebound instruction, a form of schooling that brings a teacher to the student’s residence for about an hour and a half each day.

A hearing officer ruled APS should have offered homebound instruction throughout Paloma’s education – something the mother had asked for in every meeting with APS concerning Paloma, according to Sledges’ lawyer Gail Stewart.

Sledge saw that ruling as a small win.

However, it too was a temporary solution.

She told the Journal she was glad the hearing officer ruled in this way, but ultimately she said she hopes lawmakers recognize cannabis laws are problematic for children who are patients and entitled to an education.

Arthur Melendres, an attorney for APS, was also at the committee meeting.

He said the district recognizes every child should have a free, appropriate public education, but the district also has to be aware of how decisions – including allowing medical cannabis on school grounds – affects both students and the staff, who don’t want to face legal liability, the attorney said.

“We are faced quite frankly with a bit of a conundrum,” he said.

Melendres said as lawmakers consider possible changes, Superintendent Raquel Reedy’s goal is to work cooperatively with the Legislature.

This problem is not exclusive to Paloma.

Sledge says she’s been in contact with about 20 families that are in similar circumstances.

At the meeting, Tisha Brick said her 11-year-old son Anthony uses cannabis oil for attention deficit hyperactivity disorder, post traumatic stress disorder and a type of schizophrenia.

While she used to bring it to his school in the Estancia Municipal School District, she told the committee that the school district barred the medicine after an administration shift occurred.

In fighting for cannabis oil to be permitted, Brick said, the state Children, Youth and Families Department was called and eventually her child was disenrolled.

Her son hasn’t been in school for a year and a half now and has seen the negative effects of not interacting with his peers, his mom told the committee.

In addition to what Sledge is asking, Brick wants any legal changes to include ways to prevent school officials from discriminating against students and caretakers or retaliating.

Committee chairwoman and state Rep. Deborah A. Armstrong, D-Albuquerque, thanked the two mothers for attending the meeting and sharing their stories.

“Some of the greatest work we’ve done in the state came from moms who got really mad,” she said.