HB-1060

Maddie's Law and Ducky's Bill

Every Child Deserves Safe and Equal Access to Education!

 

Also now bill added ~ SB5290

*** The legislators are in a special extended session. HB1060 has been brought into this session. We've not heard of any further advancement with the bill yet. We are hopeful this will change and the bill can still be passes this session! Please check back for further updates.

I hope this poem can provide comfort to anyone stuck in this crazy war on drugs. Today we discovered that Maddie's law, hb1060 has officially died. I can't even begin to explain how unbelievably proud I am of how far we got. Countless hours advocating for children like Maddie to have access to an education. How do I tell her she can't go to kindergarten? How do I tell her the one thing that helps her is not allowed at school? I WILL not stop fighting!!! This is more than just a bill this is my daughters right to fully access an education. To everyone who has helped us along the way, especially John Barclay and River who we now have as forever friends and partners in human rights advocacy. Today I leave you with the words I wrote this morning after finding out the news. I will never give up hope.

 

Medicine - by Meagan holt

Unconventional.

Swirling and mixing the contents of the dark green almost black, syrup like consistency.

Reminiscing on the first jar.

Remembering two years ago.

Remembering the countless phone calls.

She made it through another week.

This is the last bit of hope.

Now.

Screwing off the lid as drips of liquid gold make their way down my finger tips.

Plunging the syringe deep into the mix.

Pulling the syringe back, filling the empty spaces with medicine.

Unconstitutional.

Or so they say.

Carrying the syringe to her room.

She is sleeping.

For a moment, I bask in all that is her.

Watching the waves of her heart and oxygen monitor.

Listening to her feeding pump delivering nutrients.

In one corner her bed.

In the other, an oxygen tank and a CPR mask.

From the dark days.

Days filled with 911 calls.

Days filled with countless drugs that did nothing but take her further away.

Pausing her food to deliver the medicine.

Not right.

Her eyelashes flutter after five minutes.

Wide eyed and filled with wonder she looks at me.

Through me.

Speaks to my soul and says, thank you mommy.

10 minutes.

She signs mama, play.

12 minutes.

She grabs her rattle and coos when it makes sound.

Heart warming.

I watch her come back to life.

I watch the plant material flow through her body.

It has begun to repair the damage.

Only option.

Life saving.

Her only hope for a future.

 

The bill has passed on to we believe the next stop,

to the floor for a vote!!!

 

More Updates coming!!!

UPDATE ~ "DO PASS"!!!

Thanks to all that helped!

What now, more to come, this is not over. Not over till the governer signs it into law!

Join us in Olympia tomorrow, February 24th at 10:00 AM for the hearing on HB1060 in the appropriations committee. Even if you cannot attend, phone numbers of committee member's are listed below. Please call them and support HB1060

This bill is needed so Maddie can continue to keep her hands wide open to new learning experiences, like attending school and gaining friendships. There are 57 children who need our help in ensuring this bill becomes law. Help Maddie, River, and all children who deserve safe access to education.

House Appropriations Committee Members and Staff

222A John L. O'Brien, P.O. Box 40600, Olympia, WA 98504-0600

Committee Hearings & Bill Information: (360) 786-7155

Legislative Hotline Operators: 1-800-562-6000

Committee Members

Representative Room Phone

Ormsby, Timm (D) Chair 315 John L. O'Brien Building (360) 786-7946

Robinson, June (D) Vice Chair 332 John L. O'Brien Building (360) 786-7864

Chandler, Bruce (R) Ranking Minority Member427B Legislative Buildin (360) 786-7960

MacEwen, Drew (R)Asst Ranking Minority Member434 John L. O'Brien Building 360) 786-7902

Stokesbary, Drew (R) Asst Ranking Minority Member426 John L. O'Brien Building(360) 786-7846

Bergquist, Steve (D) 322 John L. O'Brien Building (360) 786-7862

Buys, Vincent (R) 465 John L. O'Brien Building (360) 786-7854

Caldier, Michelle (R) 409 John L. O'Brien Building (360) 786-7802

Cody, Eileen (D) 303 John L. O'Brien Building (360) 786-7978

Condotta, Cary (R) 425B Legislative Building (360) 786-7954

Fitzgibbon, Joe (D) 305 John L. O'Brien Building (360) 786-7952

Haler, Larry (R) 122H Legislative Building (360) 786-7986

Hansen, Drew (D) 369 John L. O'Brien Building (360) 786-7842

Harris, Paul (R) 403 John L. O'Brien Building (360) 786-7976

Hudgins, Zack (D) 438A Legislative Building (360) 786-7956

Jinkins, Laurie (D) 308 John L. O'Brien Building (360) 786-7930

Kagi, Ruth (D) 320 John L. O'Brien Building (360) 786-7910

Lytton, Kristine (D) 368 John L. O'Brien Building (360) 786-7800

Manweller, Matt (R) 470 John L. O'Brien Building (360) 786-7808

Nealey, Terry (R) 404 John L. O'Brien Building (360) 786-7828

Pettigrew, Eric (D) 434B Legislative Building (360) 786-7838

Pollet, Gerry (D) 132C Legislative Building (360) 786-7886

Sawyer, David (D) 306 John L. O'Brien Building (360) 786-7906

Schmick, Joe (R) 426B Legislative Building (360) 786-7844

Senn, Tana (D) 309 John L. O'Brien Building (360) 786-7894

Springer, Larry (D) 132E Legislative Building (360) 786-7822

Stanford, Derek (D) 327 John L. O'Brien Building (360) 786-7928

Sullivan, Pat (D) 339A Legislative Building (360) 786-7858

Taylor, David (R) 421 John L. O'Brien Building (360) 786-7874

Tharinger, Steve (D) 314 John L. O'Brien Building (360) 786-7904

Vick, Brandon (R) 468 John L. O'Brien Building (360) 786-7850

Volz, Mike (R) 427 John L. O'Brien Building (360) 786-7922

Wilcox, J.T. (R) 426A Legislative Building (360) 786-7912

______________________________________________________________________________________

From John Barclay

02/19/2017

 

Please join us in our fight to get River and Maddie and 55 other Washington Full Access to Education by not only contacting the below legislators but please share this and ask your friends everywhere to contact them. With your help by copying the names below to and email and sending your commitment and support we can move the Bill out of Appropriations and on its way to Governor Jay Inslee for his signature.

Please share far and wide.

Thank you

Bruce.Chandler@leg.wa.gov

Drew.Stokesbary@leg.wa.gov

Drew.MacEwen@leg.wa.gov

Vincent.Buys@leg.wa.gov

Michelle.Caldier@leg.wa.gov

Cary.Condotta@leg.wa.gov

Larry.Haler@leg.wa.gov

Paul.Harris@leg.wa.gov

Matt.Manweller@leg.wa.gov

Terry.Nealey@leg.wa.gov

David.Taylor@leg.wa.gov

Brandon.Vick@leg.wa.gov

Mike.Volz@leg.wa.gov

______________________________________________________________________________________

From John Barclay

02/06/2017

 

As a lot of you know HB1060 passed out of the Health care & Wellness Committee last week with a 13-3-1 vote!! But River and Ducky's Bill still need your help. Please Everyone Everywhere if you could email this list of legislators. Make the subject of the email HB1060 and then ask them to pass it through to the House floor for a vote. Pleases and Thank you's work well with legislators. Oh and if you meantion the bill has "bipartisan support" it gives it a little gusto.

Thank you and please share this.

 

RULES COMMITTEE MEMBER EMAILS:

Frank.Chopp@leg.wa.gov Dan.Kristiansen@leg.wa.gov Joel.Kretz@leg.wa.gov Larry.Haler@leg.wa.gov Mark.Hargrove@leg.wa.gov

Jeff.Holy@leg.wa.gov Norm.Johnson@leg.wa.gov John.Koster@leg.wa.gov Vicki.Kraft@leg.wa.gov Joan.Mcbride@leg.wa.gov

Joyce.Mcdonald@leg.wa.gov Tina.Orwall@leg.wa.gov Eric.Pettigrew@leg.wa.gov Marcus.Riccelli@leg.wa.gov Larry.Springer@leg.wa.gov

Derek.Stanford@leg.wa.gov Monica.Stonier@leg.wa.gov Pat.Sullivan@leg.wa.gov Gael.Tarleton@leg.wa.gov JT.Wilcox@leg.wa.gov

Sharon.Wylie@leg.wa.gov

HB 1060 Requires a school district to permit a student who meets certain requirements to consume marijuana for medical purposes on school grounds, aboard a school bus, or while attending a school-sponsored event. Requires the board of directors of a school district to adopt a policy that authorizes parents, guardians, and primary caregivers to administer marijuana to a student for medical purposes while the student is on school grounds, aboard a school bus, or attending a school-sponsored event.

 

Representative Brian Blake is the prime sponsor of the bill, with Representatives Jim Walsh, Sherry Appleton, Mike Chapman signed on as co-sponsors on the bill in this legislative session.

 

This bill is named after two children in different part of the state that require medical marijuana for growth, progress and as a life saving medication. This bill has the potential to have a positive impact on these two kids lives as well as many more accross the state.

 

River lovingly called Ducky is only currently able to attend 1/2 days at school. John, River's father has to get her from campus to give her noon dose of CBD oil. Taking Ducky off campus to administer her medication is too disruptive and she is unable to transition back into the school day. John wrote, "If I had access to River I could give her a cookie with cbd oil in the nurse's office then send her back to class. 7 hours of education is VITAL to getting Ducky back. River was 20lbs. underweight and had started holding her saliva. Zonisamide and Rufinamide were slowly killing her. Shortly after this she would stop eating. 4 days she didn't eat. Dr. wanted to hospitalize her and input a food tube. A couple friends joined the struggle to help her get her ducks in a row. CBD - Medical Marijuana is why she is where she is today. I'm getting her back. Just you watch her".

 

Imagine having a sick child. Now imagine that child is not allowed access to their life giving medicine while they are at school. What is your alternative? Below is a message from Meagan Holt, this bill will allow her child and other children like her's to attend school.

 

My name is Meagan Holt and I am writing you today in regards to house bill 1060. It is concerning the use of medical marijuana at school. My daughter, Maddie, suffers from a rare genetic disease called Zellweger syndrome. In early 2015 her disease rapidly progressed and she developed life threatening seizures. Daily hour long events, always requiring CPR. Within eight weeks she had tried over twenty pharmaceuticals and her medical team was out of options. Maddie was two years old at the time and was admitted into hospice with the expectation her life would end soon. This was when we discovered cannabis. Not only is Madeline off hospice, she has weaned several pharmaceuticals, has made cognitive improvements, and breathes through her seizures. Medical marijuana is giving my daughter a quality of life I never thought possible.

 

I am an active member of my community, serving as vice-chair on the Washington talking book and braille library advisory council, the director of patients for Project PC, a local non-profit, and a Seattle Children's family advisor. After having and IEP meeting with our local school and discovering they did not allow any medical marijuana use on school property I decided to look into the law. I spent 4 months researching, writing, and found that there is a serious flaw in the law. In my efforts meeting with members of the community and my local legislators I discovered another child, River Barclay, who also is unable to fully access an education safely because of this same issue. Her father, John Barclay, was also meeting with his local legislators to discuss the need for a change in the law. We have joined forces to help this bill become law. Currently the law states that schools may adopt policies around medical cannabis use on school grounds however, no school has such policy. House bill 1060 fixes this error in current law preventing

safe access of cannabis medication at schools, clarifies cannabis use in the school controlled substance act, and is tailored to meet the needs of Washington students and school staff. My daughter will be turning five years old on November 1 and it is my hope this legislation will be effective so she can attend kindergarten. For River this means attending school for a full day. I would love to schedule a meeting to sit down and discuss this more with you. I look forward to hearing from you and want to thank you for taking the time to hear from a mom and a dad who just want their daughters to be able to safely access an education. I have attached a before and after photo of Maddie so you can see how much improvement my daughter has made.

 

Current Laws

Currently the law states that schools may adopt policies around medical cannabis use on school grounds however, no school has such policy. House bill 1060 fixes this error in current law preventing safe access of cannabis medication at schools, clarifies cannabis use in the school controlled substance act, and is tailored to meet the needs of Washington students and school staff. My daughter will be turning five years old on November 1 and it is my hope this legislation will be effective so she can attend kindergarten. For River this means attending school for a full day.

 

Please read and comment on the bill

 

The comment button is on the right side of the page, in the dark green bar, “Comment on this bill”. Be sure and send your comments to both of your House Representatives & your Senator. Ask for a reply back. This is a great way to start dialogue with your Legislators.

 

Komo News Report

UPDATE 01-13-2017:

Join us in Olympia on Tuesday January 17, 2017 at 8am! Help support Maddie, River, and all of the other children who Deserves Safe and Equal Access to Education! #HB1060 #MaddiesLifeMatters #RiversLifeMatters

Please SHARE!!!

 

 

UPADTE!!!

King 5 News Report!

 

Maddie's Law hit the senate!! SB5290 needs your help! Reach out to your local senator and humbly ask them to co-sponsor this legislation that will provide medically fragile children with safer access to education!

 

Stay tuned for more update, i.e., the next hearing date and time. Plus more videos! Thank you all for your help!!!

 

 

Project PC

370 NE Camano Drive

Camano Island, WA 98282

Tel : 360-631-3458

E-mail: info@projectpc.org

nonprofit 501c3 orginzation