Thursday, August 25, 2016

#TEAMPAIGESTRONG:  AN OPEN LETTER TO MY LEGISLATORS
BY:  RACHAEL HOPE
ORIGINALLY PUBLISHED ON HER BLOG  http://www.readysethope.com/2016/08/teampaigestrong-open-letter-to-my.html


To Whom it May Concern,

I am writing to you today to share the story of my friend Anne and her daughter Paige.  Paige is almost 6 years old, and should be starting Kindergarten at her local school.  Unfortunately, Paige is being denied her right to the education she deserves and the special education services she needs.



I'd like to tell you a little bit about Paige and Anne so you can understand the background for this denial.  I met Anne Malone several years ago through a local Mom's Support Network on Facebook.  In 2013 I was one of dozens of friends who watched in horror and heartbreak as Anne's daughter Paige, then 2, began to suffer from unexplained seizures.  As mothers and friends, we were worried and shocked as there was first one post, then multiple posts about Paige seizing and having to be taken to the emergency room.  Losing a child is every parent's worst fear, and we were watching Anne lose her daughter right before her eyes.  Soon, Paige was experiencing dozens of seizures every day.  She suffered from several types, and had to have her chin stitched repeatedly after drop seizures that injured her, despite the helmet she was forced to wear every day.

Anne quit her job to stay with Paige, and still had no answers about why this was happening to her baby girl.  Answers didn't come until a year later, when the owners of the duplex they lived in started having medical problems and discovered that unbeknownst to them, the previous owners had cooked methamphetamines in the house.  The news was devastating.  Test results showed that the meth residue was at 6,000% the tolerable limit.  Anne and her husband then had answers, but still no solutions.  They were forced to leave their home, and leave most of their belongings behind, as the residue is pervasive and had ruined most of what they owned. 

Through the support of the local community, they found a new home, and three months later, Anne decided to try something different.  She was understandably tired of the cocktails of anti-seizure pharmaceuticals that stole her daughter from her all over again.  Some of these worked to stifle Paige's seizures, but they stole her personality and her consciousness.  On one cocktail, Paige slept for 17 hours a day.  On others, she sat and did nothing.  At one point the drugs built up so badly in her system that she was overdosing, and becoming toxic.  Anne had read about the use of cannabis to treat seizures, reading about successful programs in Colorado, and she had asked Paige's doctors about it and been turned down.  Finally, she found a doctor who would help them with cannabis medicine.

The first day that Paige took CBD oil, her seizures reduced by 1/3.  In one day she had 30% fewer seizures than she had been having on traditional pharmaceutical medicine.  At one week, Paige started to regain milestones she'd lost.  As Paige detoxed from the pharmaceuticals, her seizures lessened.  Finally, in late fall of 2015, Paige experienced an entire month seizure free.  After one seizure in December, the streak continued.

As of September 1, 2016, Paige will be seizure free for 9 months, all because of the CBD and THC oil treatments that her mother has learned how to prepare for her.  She is still weaning off of two pharmaceuticals and is doing better than ever.  This medicine has been nothing short of a miracle for Paige.  You can read Paige's story in more detail here.  Friends, family, co-workers, and community members have rallied behind the Malone family to raise money for medical bills and for Anne to get set up to make the medicine that brought her daughter back to her.

Two days ago, Anne shared some upsetting news.  Because of Paige's medication, she is not permitted to attend public school in Bellingham.  Despite the fact that for those with epilepsy and other illnesses, CBD and THC oils can be the only thing that works, because schools are required to be Drug-Free, Paige will not be allowed to attend. 

Private school is not an option.  For one, private schools are not required to provide the special education services that Paige will need the same way that public schools are.  Her illness has caused gross delays in motor, physical, and speech development.  She is precisely the kind of child who needs special services, and the private schools that might be able to provide this are bound to be expensive and possibly mean the family moving away from their lives in Bellingham.

Homeschooling is the only option left, and even that poses major hurdles for Anne and her family.  Anne doesn't have any of the qualifying home-based instruction that would allow her to homeschool her daughter.  There are lots of resources for homeschoolers in Bellingham, but because all of them receive some sort of federal funding, they have been denied as options for Paige.  Now, after all that they have been through already, Anne has to figure out a way to provide her daughter her basic right to education herself.

Anne has contacted a lawyer to find out if she has any options, and has filed for FAFSA so that she can go to school to become qualified to homeschool Paige by the standards Washington required.  She is frustrated and overwhelmed, and so am I.

I'm writing to you today because this is not enough.  It's unacceptable that a mother has to go through all of this just to get her child an education because of her medication.  It's reprehensible that children can go to school on controlled substances like Adderall and Ritalin, but when a child is taking plant oils that prevent them from having up to 100 seizures per day, they are denied.  It's not okay.  It's time for the community to rally behind the Malones again, to rally behind all of the families whose children are affected by this issue, and change things.  And we need your help.

In June, Colorado passed "Jack's Law" (HB 1373), requiring schools to allow medical marijuana under strict conditions.  It assures districts that if they lose federal funding, state funds will be provided to cover them so that students can get the help they need.  New Jersey also legally allows medical marijuana in schools for students.  It's time for Washington to follow suit, and ensure that children are getting the education and services they need, and that the rules about education are not causing further hardship to families who have already struggled enough. 

In his statement, released after the passage of the Cannabis Patient Protection Act (SB 5052), State Superintendent Randy Dorn stated that "Students need to be engaged and prepared for school. Marijuana doesn’t allow them to be either of those things. Marijuana dulls the brain."  This view is ignorant and uneducated, and a disservice to our children.  Why?  Because marijuana medicine and CBD medicine is not the same as smoking a joint behind the bleachers to get high. Medical marijuana is cultivated to provide specific benefits, and given in the correct concentrations does not cause the high that recreational marijuana does.

At My Little Leaf, you can read Paige's story along with the stories of other children whose lives have been forever improved and changed through the use of medical marijuana.  Despite its federal classification as a Schedule 1 substance, marijuana and CBD and THC oils have been shown again and again to have incredibly powerful medical benefits. 

As your constituent, as a taxpaying resident of Washington, as a mother, and as a member of #teampaigestrong, I urge you to consider this issue and take action.  It's time for Washington State's laws to reflect that our children are important, and that all children have the right to an education.

Thank you,

Rachael Hope   



THE LAW AS IT STANDS

Here's the deal - schools in Washington DO have the ability to say that a student can attend school and even take medical marijuana during school for certain conditions in accordance with the school's medication administration policy.  HOWEVER, any school that does this is in danger of jeopardizing their federal funding because federally, marijuana is still classified as a Schedule 1 illegal substance.  A district that allows marijuana on school grounds risks losing it's Title 1 and other federal funding.  This leaves schools to make a choice between serving the students who attend and possibly losing much-needed funding for the same students.  They are advised NOT to choose students because it's too big a risk to take.

State Superintendent Randy Dorn put out a statement after the passage of the Cannabis Patient Protection Act.  In this statement, Dorn stated:

To receive federal funds, districts must abide by the Safe and Drug-Free Schools and Communities Act and must have a Drug and Tobacco-Free Workplace and a similar student policy in place. Each district’s policy has a number of common requirements about marijuana and other drugs, such as not allowing any student to:
  • Possess,
  • Distribute,
  • Manufacture or
  • Be under the influence.
You can find more information about this in the Washington State Guidelines for Medication Administration in Schools and in the Washington State School Directors Newsletter from October 2012.

Washington passed a Cannabis Patient Protection Act (SB 5052), however, because schools receive federal funding, there is a conflict and no protection for children who receive cannabis medicine.



RESOURCES FOR ACTION


Click here for a copy of the above letter you can use when contacting your legislator.

Find your legislators and contact them.

Here is information for Whatcom County.  If you are outside Whatcom County, please use the link above.

District 1/2 Senators:

Maria Cantwell - US Senator
You can email Maria through her website here.
You can reach Maria's Seattle office at (206) 220-6400

Patty Murray - US Senator
You can email Patty through her website here.
You can reach Patty's Everett office at (425) 259-6515.

District 1 Congressperson:

You can email Suzan through her website here.
You can reach Suzan's Mt. Vernon office at (360) 416-7879.

District 2 Congressperson:

Rick Larsen - US State Representative
You can email Rick through his website here.
You can reach Rick's Everett office at (425) 252-3188.

District 42 State Legislators:

Doug Ericksen - State Senator
You can email Doug at doug@senatorericksen.com.
You can reach Doug's office at (360) 786-7682.

Vincent Buys - State House
You can email Vincent at vincent.buys@leg.wa.gov.
You can reach Vincent toll free at (800) 562-6000.

Luanne VanWerven - State House
You can email Luanne at luanne.vanwerven@leg.wa.gov.
You can reach Luanne's toll free at (800) 562-6000

Contact the Washington State Board of Education.

Address:

PO Box 47206
600 Washington ST SE
Olympia, WA 98504-7206

Email: sbe@k12.wa.us
Phone: 360.725.6025

Contact the Office of the Superintendent of Public Instruction.

Address:

Mail stop: 47200
Old Capitol Building
P.O. Box 47200
Olympia, WA 98504-7200

Contact Greg Baker, Superintendent of Bellingham Public Schools.

Email:  Greg.Baker@bellinghamschools.org
Contact Phone Number:  676-6501 extension 6501

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