Petition to Premera Blue Cross, Starbucks, Jay Inslee
Premera Blue Cross: My daughter needs this life sustaining medical device
My daughter Laurie Beth Nelson needs a "gastric neurostimulator". This medical device, implanted in the stomach, will stimulate the nerves that allow the stomach to empty. Laurie's insurance company Premera Blue Cross (via her employer Starbucks) is denying coverage for this device. The device is used to treat an incurable condition called gastroparesis, where the stomach no longer empties regularly, causing nausea, vomiting, and dehydration. Because Laurie has received a kidney-pancreas transplant, a feeding tube is not optional due to the risk of infection. There are no medications to treat this disease. The constant nausea and frequent vomiting that she experiences as a result of the gastroparesis are making it difficult for her to absorb her transplant medications that prevent rejection of her transplanted organs. Laurie has been admitted to the hospital monthly, sometimes weekly, for IV. hydration and medication that she cannot keep down due to nausea and vomiting. Premera Blue Cross helped cover the cost of her life-saving transplant, but refuses to cover this device which will keep it from failing. After all that Laurie has endured to stay alive, this is inconceivable, but true. Please demand that Premera Blue Cross pay for the gastric neurostimulator so that Laurie can continue her fight for a normal, healthy life.
Petition to Minister Lindiwe Zulu, Parliamentary Portfolio Committee on Social Development
Prioritise the Participation of Persons with Disabilities in National Decision-making.
Persons with disabilities are marginalised globally and South Africa is not exempt from this fact. Complaints received by the South African Human Rights Commission between 1 April 2015 - 31 March 2016 noted that out of 749 equality related complaints, 9% (66) were passed on the grounds of disability - Current Trends - Equality Related Complaints, Page 10. On 21 March 2022 South Africa celebrated Human Rights Day in commemoration of the Sharpeville Massacre where State sanctioned police brutality resulted in the killing of 69 peaceful anti-apartheid protesters. As SA honoured this important day, the global community celebrated International Down Syndrome Day, with a special call from the United Nations for greater participation of people with down syndrome to have a hand in the decision-making that affects their lives. Persons with disabilities and among this collective, persons with down syndrome, remain largely disadvantaged in the socioeconomic and political climate of South Africa as stigmatisation, fear and prejudice influences the perception South Africans and the world have of this demographic. The 2016 White Paper on the Rights of Persons with Disabilities was an achievement for South Africa as the first policy document that prioritises the rights of disabled people and calls for access to equal and fair participation in all democratic undertakings as envisioned in the Constitution. Considering this development, disabled people largely remain disenfranchised and do not get to enjoy the full privileges the Constitution affords all citizens. Persons with disabilities are often side-lined, catered for on an exclusionary basis or entirely disregarded in the scramble for national development. This petition calls for the full implementation of the 2016 White Paper on the Rights of Persons with Disabilities, with a specific focus on: Building capacity amongst this demographic to allow them to influence public perception by enforcing, advocating and developing their rights where prejudice and inequality exists. To establish channels in support of the development of the social, economic and political rights of persons with disabilities. To expedite state support and financing for the realisation and protection of human rights directly affecting the disposition of disabled people in society. To immediately amend laws and policy, across the three spheres of government, that would allow for ease of accessibility to public spaces, public transport, communication and information. Explore the risks and develop solutions associated with compounded marginalisation to protect disabled girls, boys, women and men from the continuous eroding state of their basic human rights. Ensuring that economic opportunities and representation, both in the public and private sector, have substantial proportion of disabled people who qualifies for these positions, and That any institutional prejudice, in the private or public sector, is dealt with in the framework of the law, and if such laws do not exist, to embark on the development of such legislation. To build a fully inclusive and non-prejudice society that thrives on the rights of all people, we need to develop a strong framework that strengthens the voices of societies most vulnerable and achieve collective success by building the capacity needed for this.
Petition to BBC
Take down BBC article
Time to talk about this trash by @bbcnews that was posted last week. If you haven’t seen it yet, it’s not worth reading. Everyone I know with a disability is upset after reading this article. Including the people they interviewed. Originally BBC reached out to influencers who openly talk about their disabilities. BBC told the people they were interviewing this article would focus on the toxic and harmful forums with trolls attacking disabled influencers. Instead after completing the interviews and article, BBC chose a clickbait title accusing influencers of faking their disabilities for attention and completely changing the story. To make it clear, I was NOT one of the influencers interviewed by this article, but plenty of my friends were personally affected and are now experiencing more harassment than ever. Just one example is how BBC told @thechroniciconic they would use the interview, and then they completely cut it to change the message. Those are the screenshot messages I included in my post on Instagram @butyoudontlooksickofficial You can keep trying to attack us. But we won’t stand down. We’ve been fighting stigma and ableism our entire lives.It’ll take more than a clickbait title to tear us down. But I can assure you @bbcnews you’ve added fuel to our fire for why our advocacy is so important. To continue to tear down the ableism this world thrives on. So thank you for being a prime example of ableism and why our community stands so strong together. You attack one of us, you attack all of us.
Petition to Florida Legislation, Florida State Senate, Florida State House
Down Syndrome Awareness License Plate
With 1 out of every 698 births in the United States resulting in a child born with Down syndrome, the need for ADVOCATING, AWARENESS and ACCEPTANCE is now. One such way is by allowing self advocates, parents, friends and families to purchase a designated Down syndrome Awareness license plate through the State of Florida DMV. This will be a platform to bring awareness and create invitation to research for those who may not know what Down syndrome is, and what people who have this genetic anomaly are like. We invite all FLORIDA self advocates, parents and friends to vote YES for this license plate to be adopted and approved by the legislature. Please leave a comment with your City/County information.
Petition to U.S. Senate, Dan Brown, Kathy J. Byron, Lee Ware, Mike Cunningham, Timothy Hugo, Bill Eigel, Jason Holsman, Daniel Marshall, III, Jacob W Hummel, Robert B. Bell, Israel D. O'Quinn, Jamilah Nasheed, Bob Onder, Ron Richard, David E. Yancey, John Joseph Rizzo, Caleb Rowden, Margaret B. Ransone, Dave Schatz, Scott Sifton, Wayne Wallingford, Michael J. Webert, Paul Wieland, Tony O. Wilt, Christopher T. Head, Jeion A. Ward, Mark L. Keam, Eileen Filler-Corn, Kaye Kory, Joseph C. Lindsey, Lamont Bagby, David J. Toscano, Steve E. Heretick, Michael P. Mullin, Jeffrey M. Bourne, President of the United States, Maria Chappelle-Nadal, U.S. House of Representatives
Stop Forcing Mail-Order Pharmacy as the Only Option of Coverage
Patients' lives depend on choice. **Since starting the petition, I have realized that there are many issues other than temperatures with forced mail-order pharmacy. Mail-order pharmacy is very loosely regulated. There are life-threatening delays, lack of face-to-face relationships with pharmacists for people with chronic conditions, and rapid closures of our independent pharmacies; although, a recent study showed people prefer independent pharmacy (2018, Gill). *************Our Story************* Our son received a life-saving liver transplant at the age of 2 from a 3-year-old little girl. His life depends on the potency and effectiveness of chemotherapy or immune suppression medications every 12 hours to prevent his body's immune system from fighting off his transplanted liver. In the past mail-order pharmacy delivered his liquid oral medications in nothing but a plastic envelope on a 102-degree day on a hot enclosed non-temperature controlled UPS truck. Shortly after, he went into liver rejection which could have resulted in complete liver failure or death. I speculated that the medication could have been too weak after the delivery of medications in high heat. I vowed to never again risk his life with mail-order pharmacy. Recently, we were mandated or forced to only use mail-order pharmacy in order to receive coverage for his life-saving medications. The package arrived in only a bag on a hot day without an ice pack. I now know that the hot non-temperature controlled enclosed delivery truck and mailboxes can reach temperatures up to 120-170 degrees. His labs elevated again afterward. My son wants to know, "Why would they do that?" I contacted the manufacturer, who performs the testing, who informed me that both of my son's medications should be discarded and considered less potent once stored above 86 degrees as higher temperatures and freezing could both result in lower potency. I contacted the mail-order pharmacy who refused to replace or take back the medication. They said the law & USP Pharmacopoeia allows them to ship up to 104 degrees, although the manufacturer states it is not proven safe at these temperatures. However, I have received communication from USP Pharmacopoeia who writes guidelines for storage, and they also said that the mail order pharmacy should follow the manufacturer's guidelines of 59-86 degrees for storage. Again, the trucks reach up to 170 degrees which is much hotter than 104. I contacted the FDA, who states that the mail order pharmacy should be using the manufacturer's guidelines that have been proven safe. Since the mail-order pharmacies are regulated loosely by the State Board of Pharmacy, not the FDA, there was nothing that the FDA could do. I made over 30 calls to the insurance company begging for them to please let us pick my son's medications up at the local pharmacy at which they are filled. My son's physician wrote an appeal and his transplant team has stated that they have tried to voice their concerns about this issue with their pediatric/child patients and no one is listening! The insurance company still denied the doctor's appeal for us to pick up my son's medications in the safest way. It was not until the Media became evolved that the insurance company budged. I felt helpless and have united with many other pharmacists, physicians, patients, mothers and fathers, and caregivers who feel the same way. Helpless. Mail-order of prescription drugs should be a choice, not the only option of coverage. Mail-order pharmacies may appear to save money, but when my son ended up in the hospital after taking medications that could have been compromised by having lower potency, the cost of the rejection was thousands of dollars. If his liver would have fully failed, the cost of his liver transplant for just 5 days (he was in the hospital for 5 weeks) was over $1,000,000. The lax regulation and oversight may save money on prescription drug plans but may come at an increased cost to the health plan itself. Also, keep in mind the endless waste of medications that automatically are sent regardless of whether or not patients need them. Also, people with chronic, complex conditions, should always have the option of face to face interaction with a pharmacist who knows their complex needs and medical history. The pharmacist and patient relationships are crucial to the successful outcome of the patient's overall health. Taking this away is harmful to patients and be more costly to our already stressed healthcare system. Only allowing mail-order pharmacy for coverage is unethical and irresponsible. I share stories on my social media sites every day of patients who are suffering from a lack of choice. We need your help to make mandatory mail-order an option, not a mandate. YOUR URGENT SUPPORT WILL SAVE LIVES! THANK YOU!! WE APPRECIATE ALL OF THE SUPPORTERS, CAREGIVERS, & PATIENTS. Thank you, Loretta Boesing, Founder of Unite for Safe Medications You may make a tax-deductible contribution to support our advocacy here Email: firstname.lastname@example.org Facebook Page: Issues with Mail Order Pharmacy @justamomwholovesherson Twitter: @BoesingLoretta The greatest way that you can help is by sharing this petition & gathering 2-3 people in your community who are having issues and speak to your legislatures. Reference: Gill, Lisa L. “Consumers Still Prefer Independent Pharmacies, CR's Ratings Show.” Product Reviews and Ratings - Consumer Reports, 7 Dec. 2018, www.consumerreports.org/pharmacies/consumers-still-prefer-independent-pharmacies-consumer-reports-ratings-show/
Petition to Robert Greenberg, President of the United States, Tom Cotton, Rick Crawford
A change allowing people to buy one set of shoes when they need two sizes for each foot
To Whomever it May Concern, I’m not the most eloquent writer. I have an English degree, but no amount of writing could prepare me for this. I have a disability. I have been disabled my entire life, but the discovery wasn’t made until I was three years old. I have cerebral palsy. I’m writing this and it feels wrong to my very nature. I was raised with the belief that I shouldn’t see myself as such, that I shouldn’t see myself as less. Society still treats those with a disability as being less. I had to learn to grit my teeth and bear it. I played baseball and was a cheerleader, I did this mostly one handed. I had the word “crippled” chanted at me. Guys didn’t date me. I was told, “people are stupid, don’t listen”. I had to compromise and compensate for my disability. When I was younger, I wore jeans in the dead of summer because I didn’t want people to stare or ask, “What’s wrong poor little crippled girl?” This happened often, usually by people of an older generation, and it hurt every time. The word “crippled” makes me what to break everything in arm’s reach, but I don’t. I can’t change a society that doesn’t want to change. Society thrives on the less being made to be lesser. But that’s the reason why I’m writing this, because things need to change. I’m praying for the better. I have two different sized feet and because of my disability and unlike most consumers, if I want shoes to fit comfortably I am forced to buy two sets of the same pair of shoes in two different sizes. I’m limited to only being able to wear sneakers and on occasion boots, if I’m willing to wear a smaller size to compensate for my left foot. I have to wear shoes that support my ankle. I, and people in my situation, are forced to spend twice as much as anyone else. This should not be a thing, yet it is and people deal with this everywhere. Shoe companies profit off of the disabled more than they do the average customer. I usually can’t go shoe shopping or walk in a shoe store without wanting to cry. There have been a couple times that a retailer let me buy the one set with the two different sizes. However, I was told it was a one time thing with one retailer, because it was against policy and with the other I had to find one certain manager because they were the only one willing to do it. If they weren’t there, it wasn’t going to happen. This entire ordeal is upsetting and embarrassing and this should not be the case. I’ve already spoken to a corporation that I won’t name, but it seems nothing can be done. The woman I have been speaking to is lovely and I know she is trying to help, but I don’t feel anything can be done. I don’t want money. I just want to be able to buy shoes without a fight. I’m not alone in this and I know this is discrimination and possibly illegal, but I’m at a loss. I'm petitioning the shoe manufacturers to upgrade their websites to allow for split size buying. If they price my the shoe, instead of for the set, this would benefit people with different sized feet as well as amputees. When pricing the shoe, they can make it that when the split sized set is purchased we are being charged the same as those who buy the pair. I do not think this a big ask, shoes are a necessity and no one should be forced to pay extra. It feels like we should be past this in 2021. I hope retail policies change to help those like me. With a little faith and will, can change happen? Danielle Joy Mitchell
Petition to Janet Wagner, CEO of Sutter Health Mills-Peninsula Medical Center, Jillian Thomas, Administrative Director at Mills-Peninsula Medical Center, Sarah Krevans, President and CEO of Sutter Health, Sutter Health Board of Directors, James Conforti
Save the Mack E. Mickelson Arthritis and Rehabilitation Center therapeutic pool
“Gentle sweet water—quieting pain today, wakening courage for tomorrow -honoring the memory of Ellen Moira Burns.” These powerful and soothing words grace the wall of the Mack E. Mickelson Arthritis and Rehabilitation Center pool. As many people are aware, public hours at the Mickelson pool were dramatically reduced in January of 2020 with the intention of shifting the pool’s use from support for chronic pain and rehabilitation to a more profitable model of acute care for physical therapy. Independent pool users were very disappointed at the time, and several petitions circulated expressing discontent. In mid-March of 2020, the pool was closed as a result of the COVID-19 shelter-in-place county directive. While disappointed, patrons understood and patiently waited for its reopening when the pandemic restrictions would be lifted and when it would be safe again to enjoy the facility. In March of 2021, without any outreach to participants and their families, Sutter Health announced that it will be permanently closing this unique and much-needed facility for independent use by patrons. This is now the third local closure by Sutter of a program benefiting seniors and those with disabilities. (1) In 2019, Sutter Health suddenly closed the Fitness Center on Trousdale Drive that served patients recovering from surgeries. (2) (It was saved by the Peninsula Health Care District and Eskaton). The second program, Senior Focus at 1720 El Camino Real in Burlingame, also was permanently closed by Sutter Health to the dismay of those who depended on the senior care program. (3) Senior Focus offered a safe place for seniors with memory loss or other afflictions brought by advanced age to spend the day while receiving some medical care and socializing with others. Sutter’s decisions are having a detrimental effect on San Mateo county residents’ ability to recover, thrive and enjoy an overall quality of life. The Mickelson pool at the Mills-Peninsula Medical Center (a Sutter Health affiliate) is a unique facility that is designed specifically for standing therapeutic exercise. It is wheelchair accessible and heated to about 90 degrees Fahrenheit. For decades, the pool has been open to community residents of all ages. Its healing, warm water has provided an invaluable resource for chronic pain management and rehabilitation for seniors, disabled individuals, patients recovering from surgeries, children with special needs, and pregnant women. Because this San Mateo facility is the only pool in the county specifically designed for therapeutic use, patrons drive from all over—Half Moon Bay, San Francisco, Oakland and San Jose—to take advantage of this precious resource. It’s not just a place for physical rehabilitation; it is also a social community that offers mental health benefits to disabled and elderly individuals, many of whom rarely leave home. The Mickelson pool patrons and staff are a close-knit community. The Mickelson pool was a gift from a local family for the benefit of the community, not just for the pockets of Sutter Health. The $4 million Mickelson Arthritis and Rehabilitation Center was financed entirely by community donations—including $1.5 million from the late philanthropist Mack E. Mickelson. (4) Pool patrons understand that they may need to be flexible with pool hours and fees. To this end, we, the undersigned, insist that Sutter Health Mills-Peninsula Medical Center CEO Janet Wagner, Sutter Health Mills-Peninsula Medical Center Administrative Director Jillian Thomas, President and CEO of Sutter Health Sarah Krevans, and the Sutter Health Board reopen the Mickelson pool for public use and honor their own mission statement: “We enhance the well-being of people in the communities we serve through a not-for-profit commitment to compassion and excellence in healthcare services.” Please support our community by signing this petition! #WarmWaterMatters (1) Stahl, Jane and Steve. "Letter to the Editor: Sutter’s senior program closure will have big impact.” San Mateo Daily Journal, 3 Mar. 2021, https://www.smdailyjournal.com/opinion/letters_to_editor/sutter-s-senior-program-closure-will-have-big-impact/article_7a3eb424-7bc4-11eb-97a6-03374d25b8b3.html Accessed 21 Apr. 2021. (2) Thompson, Bruce, "Letter to the Editor: Sutter deserves scrutiny over senior program closure." San Mateo Daily Journal, 3 Mar. 2021, https://www.smdailyjournal.com/opinion/letters_to_editor/sutter-deserves-scrutiny-over-senior-program-closure/article_76b99d0a-7bc4-11eb-bb52-1b14febe1dfc.html Accessed 21 Apr. 2021. (3) Walsh, Austin. “Senior care program’s closure vexes Burlingame community: Frustration over Sutter Health’s decision to terminate Senior Focus in Burlingame.” San Mateo Daily Journal, 1 Mar. 2021, updated: 2 Mar. 2021, https://www.smdailyjournal.com/news/local/senior-care-program-s-closure-vexes-burlingame-community/article_64a425fa-7a4c-11eb-9bc8-dbb338e6d059.html Accessed 21 Apr. 2021. (4) "Peninsula Datelines." San Francisco Chronicle, 5 Jan. 1996, updated: 8 Feb. 2012 https://www.sfgate.com/bayarea/article/PENINSULA-DATELINES-3153834.php Accessed 21 Apr. 2021.
Petition to Senator Adam Gomez, Representative Michael Finn, Senator Karen Spilka, Represenative Ronald Mariano, Representative Natalie Blais, Senator John Velis
Stop Shocking People with Disabilities #StoptheShock and Pass H.225 in MA
MASS Advocates Standing Strong is asking you to sign the petition to have Massachusetts legislators pass the bill H.225. Video: MASS Advocates Standing Strong board read a letter to ask legislators to pass the bill. Video Link: https://www.youtube.com/watch?v=Xk3RlV00Zls Learn more about MASS Advocates Standing Strong and #Stoptheshock: https://www.wearemass.org/stop-the-shock Background information: Since the 1990s, The Judge Rotenberg Center in Canton, MA has been using the Graduated Electronic Decelerator (GED) to shock students with disabilities for punishment. The device was exclusively developed for the JRC center. A method that they say is “treatment”. This is not true at all. Even the center’s founder, Matthew Israel said “it has to hurt enough” to modify behavior. The GED devices are given as aversive therapy to students in the form of 2 second electric shocks through a remote control. Quoted online, the shocks are very painful and can cause burns. A reporter said it felt like a bee sting, others say the shocks felt more painful. Imagine being given shocks multiple times a day, for doing anything outside your behavior plan. Many students are shocked for being non-compliant, which is as simple as standing up when they are not supposed to. For many students, they have been shocked for many years, and have developed Post Traumatic Stress Disorder (PTSD). The devices are only used by the Judge Rotenberg Center. It was deemed a torture device by the UN. It is illegal to use the devices on animals, neurotypical children and adults, but not for individuals with Intellectual and Developmental Disabilities (IDD). The FDA finally banned the devices in 2020, after years of activists fighting against the use of GED devices and JRC. BUT, in July 2021, a Federal Appeals court overturned the FDA ban citing the FDA had no right to regulate a medical practice. The bill H.225, introduced by Danielle Gregoire, would prohibit an institution funded by MA to administer any procedure that would cause obvious physical harm, such as electric shock, as a form of punishment. The bill also states that no such program can give any form of physical punishment that is prohibited by law, or would be prohibited if used on a person without a disability. Who is the petition for: Appeal to Massachusetts legislators to pass the bill. We at Massachusetts Advocates Standing Strong, an organization based in MA that is run by the board and for self-advocates with Intellectual and Developmental disabilities (IDD), created this petition because we strongly believe in banning the GED device and other forms of painful punishment. We have developed a letter and video in protest against the device and ask all of you to help sign the petition to appeal to legislators to pass the bill. Passing the bill would be the next step in the fight against the GED Devices and Judge Rotenberg Center. About Massachusetts Advocates Standing Strong: MASS was founded in 1998 by a group of self-advocates with Intellectual and Developmental disabilities (IDD). The group has been recognized for various legislative initiatives. We advocated for the change of the name DMR (Department of Mental Retardation) to Department of Developmental Services in 2009. In 2014, MASS testified at the Massachusetts state house to help pass Real Lives Bill. We continue to advocate for human rights issues and we need your support!