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Amidst the COVID-19 pandemic, GLOBAL helps provide economic support, shelter, food, and medical care to Down Syndrome Organizations and the Families they serve in 23 states and 4 countries

Press Contacts:

Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832 Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494

DENVER, CO July 23, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) will provide over $116,000 in COVID-19 Emergency Relief Global Grants (GLOBAL Grants). The grants support over 140 families and 42 Down syndrome organizations in 23 states and 4 countries (Albania, Honduras, Kosovo, and Uganda). GLOBAL Grants are providing food, medical care, shelter support, and other critical assistance to individuals with Down syndrome and their families facing crises during the COVID-19 pandemic.

“GLOBAL is struggling financially too but we decided to convert our educational grants to COVID-19 emergency grants because the need is so great right now, and we simply needed to tap our reserves and help our Down syndrome community,” says Michelle Sie Whitten, GLOBAL President and CEO. “We didn’t think we could fund the overwhelming number of family grants but with the incredible generosity of The Salah Foundation, a private invitation-only foundation, we were able to fund every single one. My staff were literally crying as they read the applications and we feel beyond blessed to provide some modest relief.”

Below are some examples of the GLOBAL Grants:

  • In St. Louis, a grandmother and her two grandchildren who she adopted, one of whom has Down syndrome, were left homeless for four months due to limited resources and social support during this time. The GLOBAL Grant was able to pay the rent to help the family get back on their feet.
  • In Albania, desperately-needed food packages were sent to 56 individuals with Down syndrome and their families that will help them get through the winter as jobs and government support have dried up.
  • In West Michigan, a father who is a disabled veteran and a mother who was temporarily laid off from her special education job due to COVID-19 could not pay their medical bills for their child with Down syndrome who recently had heart surgery. The GLOBAL Grants provided important interim relief for the family of six.
  • In Atlanta, the GLOBAL Grant helped keep the lights on at Adult Disability Medical Healthcare allowing the clinic to continue to provide critical and high-quality care virtually to their patients including care associated with COVID-19.

“Many of our donors have frozen their support, project grants have been postponed, and unfortunately, our government left the non-profit sector out of financial support packages,” says Emanuela Zaimi, Executive Director of Down Syndrome Albania Foundation. “Feeling hopeless and exhausted, we needed support and luckily GLOBAL stepped in and provided this amazingly generous grant, making a world of difference for 56 families of our community. We are very grateful to GLOBAL and to anyone who contributes to its mission, as this help reaches us too!”

Martine Hobson, Executive Director of Down Syndrome Association of Memphis & the Mid-South, says, “We’ve been GLOBAL members for years. To see how they’ve supported Down syndrome organizations on a national scale and now supporting us in this very personalized way is a testament to their leadership and dedication to every person with Down syndrome.

“I am so proud to be part of the GLOBAL team during this crisis," says Ashley Sparhawk, GLOBAL Grants Program Manager. “It took a lot of time and work, but we have a wonderful GLOBAL Membership Advisory Board that helped and the generous Salah Foundation gift. At GLOBAL, we feel personally connected to all the professionals and families that are struggling through this difficult time and we are doing everything we can to lend a helping hand.”

The following 42 organizations received GLOBAL Grants:

1. ACDS
2. Adult Disability Medical Healthcare
3. Angel’s Center for Children with Special Needs
4. Chesapeake Down Syndrome Parent Group
5. Down Syndrome Albania Foundation
6. Down Syndrome Alliance of the Midlands
7. Down Syndrome Association for Families
8. Down Syndrome Association of Central Florida
9. Down Syndrome Association of Central New Jersey
10. Down Syndrome Association of Connecticut, Inc.
11. Down Syndrome Association of Delaware
12. Down Syndrome Association of Greater Cincinnati
13. Down Syndrome Association of Greater Richmond
14. Down Syndrome Association of Greater Winston-Salem
15. Down Syndrome Association of Memphis & the Mid-S.
16. Down Syndrome Association of Middle Tennessee
17. Down Syndrome Association of Minnesota
18. Down Syndrome Association of Northeast Indiana
19. Down Syndrome Association of the Valley
20. Down Syndrome Association of West Michigan
21. Down Syndrome Connection of the Bay Area
 

GLOBAL is working hard to protect and support people with Down syndrome during the pandemic. In addition to providing COVID-19 Emergency Relief Global Grants, GLOBAL is creating important resources like the Down syndrome/COVID-19 Q&A, and supporting legislation that prohibits discrimination so that people with Down syndrome and other disabilities can receive COVID-19 medical care in the event there is medical care rationing. Most recently, GLOBAL provided over 31,000 pieces of personal protective equipment (PPE) to people with intellectual and developmental disabilities who are wards of the state in Colorado.

To get the latest COVID-19 information and GLOBAL resources, visit www.globaldownsyndrome.org/covid-19

To learn more about GLOBAL’s membership program, visit www.globaldownsyndrome.org/become-a-member/

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer's and Cognition Center – all on the Anschutz Medical Campus.

Global's widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

Global Webinar Series – Spring 2020 Recap

July 10th, 2020 by Global Down Syndrome Foundation

SPRING 2020

Government Funding for Down Syndrome Research Triples – What This Could Mean for Children & Adults with Down Syndrome

What You Need to Know


Overview

The exciting new Down syndrome research at the National Institutes of Health (NIH) and the NIH INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE). How families and Down syndrome organizations can participate in, and benefit from research. How to use powerful medical registry resource, DS-Connect®, under the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD), and learn about research opportunities. A new clinical trial aimed at normalizing immune function in Down syndrome to cure autoimmune skin conditions and improve cognitive function and quality of life. The Crnic Institute Human Trisome ProjectTM, the most ambitious dataset for people with Down syndrome that serves as a discovery engine aimed at the diseases that people with Down syndrome are highly predisposed to (e.g. Alzheimer’s disease and autoimmune disorders) and protected from (e.g. solid tumor cancers).


Speakers

Dr. Melissa Parisi
Chief, Intellectual & Developmental Disabilities Branch, Eunice Kennedy Shriver NICHD National Institutes of Health (NIH),
DS-Connect® Registry Manager

Dr. Joaquín Espinosa
Executive Director, Linda Crnic Institute for Down Syndrome, Professor of Pharmacology, University of Colorado


PDF Presentation: Download Government Funding for DS Research

Dr. Melissa Parisi


PDF Presentation: Download Scientific Research in the INCLUDE Era

Dr. Joaquín Espinosa


Important NoticeThe Global Down Syndrome Foundation’s employees and/or volunteers are NOT acting as your medical professional or attorney. Responses you receive via electronic mail, phone, or in any other manner DO NOT create or constitute a doctor-patient or attorney-client relationship between you  and the Global Down Syndrome Foundation (Global), or any employee of, or other person associated with, Global.

Information received from Global’s employees or volunteers, or from this website, should NOT be considered a substitute for the advice of a medical professional or lawyer. Globaldownsyndrome.org DOES NOT provide any medical or legal advice. You should consult with your own doctor or lawyer for medical or legal advice. This website is a general service that provides information over the internet. The information contained on this website is general information and should not be construed as medical advice to be applied to any specific factual situations.

Jamie Foxx, DeOndra Dixon, Caterina Scorsone, John C. McGinley, Walt Snodgrass and more support the World’s Largest Event Benefitting People with Down Syndrome

Press Contacts:

Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832 Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494

DENVER, CO June 30, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced an impressive roster of dedicated celebrity supporters for its marquee Be Beautiful Be Yourself Fashion Show scheduled for Saturday, October 3. The annual event is the largest fundraiser for Down syndrome in the world, raising over $20 million to date for life-saving and transformative research and medical care.

The star-studded roster includes Academy and Grammy Award winner Jamie Foxx; award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, Megan Bomgaars, and Caterina Scorsone; Denver Broncos’ Brandon McManus, world-renowned swimmer Karen Gaffney, and Colorado Rapids’ Kellyn Acosta; award-winning speakers, journalists, and TV anchors DeOndra Dixon, Frank Stephens, Kyra Phillips, John Roberts, Kim Christiansen, and Tom Green; R&B power couple Ronnie & Shamari DeVoe; and supermodel Amanda Booth. A full roster of celebrities will be announced in the coming weeks.

The event will honor GLOBAL Ambassador Walt Snodgrass from Omaha, Nebraska. Walt is a sophomore at Westside High School, where he is fully included. He runs track and plays in the school band, and is part of “Sparklers” Cheer and the unified bowling team. Walt is a staunch advocate for inclusion. His contributions to his family and community, his zest for life, and compassion for others make him beloved wherever her goes. “I love modeling in GLOBAL’s fashion show in Denver, showing the world what people with Down syndrome can do. Together, we are changing the world,” says Walt. During the fashion show, 20 brilliant and beautiful models with Down syndrome will rock the runway, including GLOBAL’s Ambassador.

“At GLOBAL we are taking COVID-19 very seriously, and we are closely monitoring and following government guidelines to determine the format of the fashion show,” says Michelle Sie Whitten, GLOBAL President and CEO. “As of now, we are planning a smaller in-person event and a larger virtual component that we hope will be every bit as magical and inspiring.”

In response to the COVID-19 pandemic, GLOBAL has been a leader for the Down syndrome community – creating important resources like the Down syndrome/COVID-19 Q&A and supporting legislation that prohibits discrimination so that people with Down syndrome and other disabilities can receive COVID-19 medical care in the event there is medical care rationing. GLOBAL also provided COVID-19 Emergency Relief Global Grants to over 100 individuals with Down syndrome and their families needing food, medicine, and shelter, and most recently GLOBAL provided over 31,000 pieces of personal protective equipment (PPE) to people with intellectual and developmental disabilities who are wards of the state in Colorado.

Proceeds from GLOBAL’s Be Beautiful Be Yourself Fashion Show underwrite GLOBAL’s direct help to the community, excellent quality health care to over 2,000 patients with Down syndrome from 28 states and 10 countries, and transformative research focused on the relationship between Down syndrome and Alzheimer’s disease, solid tumors, autoimmune disorders and more.

To support GLOBAL’s work, please consider a donation.

To learn more, visit: www.bebeautifulbeyourself.org

To buy tickets, visit: https://bebeautifulbeyourself.org/buy-tickets/

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

GLOBAL Recap of the 2020 NDSC Annual Convention From Your Couch

June 25th, 2020 by Global Down Syndrome Foundation


Engaging Roundtable Discussion

During GLOBAL’s Roundtable, speakers presented on COVID-19, breakthrough research, & more.
GLOBAL’s 2020 NDSC Research & Medical Care Roundtable Recap



Frank Stephens, GLOBAL Ambassador &
Q-Award winner,
The Importance of Research for People with Down Syndrome


Ed Janoff, MD, CU Professor of Medicine-Infectious Disease, Living Safely with Down Syndrome in the Age of COVID-19


Karen Gaffney, GLOBAL Q-Award winner,
Living Safely with Down Syndrome in the
Age of COVID-19


Kelly Sullivan, Boettcher Investigator & Assistant Professor, Crnic Institute, Immune System Dysregulation in Down syndrome


Mike Rafii, MD, PhD, Medical Director of the Alzheimer’s Therapeutic Research Institute, Alzheimer’s Disease in Down Syndrome



Joaquin Espinosa, Executive Director of the Crnic Institute, Immune modulation in Down syndrome and COVID-19


Mike Ybarra, MD, FAAEM, FACEP, PhRMA,
The Biopharmaceutical Industry’s Efforts
to Beat Coronavirus


Michelle Sie Whitten, MA, GLOBAL President & CEO, Our Response to COVID-19 and the “COVID 19 & Down Syndrome Q&A” Collaborative


Kent McKelvey, MD, Associate Professor in Medical Genetics & Family Medicine, Medical Guidelines For Adults with Down Syndrome


Melissa Parisi, MD, PhD, NICHD National Institutes of Health, DS-Connect Registry Manager, Promising Research at the NIH

 

GLOBAL Receives Prestigious Award

NDSC presented GLOBAL with the 2020 Pueschel-Tjossem award for the Global Medical Care Guidelines for Adults with Down Syndrome. GLOBAL President & CEO Michelle Sie Whitten and Bryn Gelaro, LSW, who have worked diligently over the past several years to accomplish this, accepted the award.

 


Zack Gottsagen Q&A

Zack Gottsagen was the keynote for the closing ceremony of the NDSC Annual Convention From Your Couch. Zack is an award-winning actor, best known for his breakout film The Peanut Butter Falcon, where he starred alongside Shia LaBeouf and Dakota Johnson. GLOBAL is proud to be an Executive Producer of the film.


Captivating Workshops

GLOBAL scientists, clinicians, Down syndrome experts, and self-advocates presented thoughtful workshops on topics and resources for adolescents and adults with Down syndrome, parents and caregivers, medical professionals, and more.

Promoting Strengths and Adaptive Resources in Persons with Down Syndrome
Dennis McGuire, PhD, Senior Consultant of Global Down Syndrome Foundation

Common Questions (And Answers!) about Health Conditions in Adolescents and Adults with Down Syndrome
Brian Chicoine, MD, Medical Director of Advocate Medical Group Adult Down Syndrome Center

Desensitization to Use of Medical Equipment and Procedure Related Distress
Lina Patel, MD, Director of Psychology at Sie Center for Down Syndrome

An Important New Resource: Global Medical Care Guidelines for Adults with Down Syndrome
Michelle Sie Whitten, President & CEO of Global Down Syndrome Foundation
Bryn Gelaro, LSW, Director of Adult Initiatives & Special Projects at Global Down Syndrome Foundation
Brian Chicoine, MD, Medical Director of Advocate Medical Group Adult Down Syndrome Center

Research & Medical Care Roundtable

For more information on any of our workshops or speakers, contact events@globaldownsyndrome.org

Ed Janoff, MD

June 22nd, 2020 by Global Down Syndrome Foundation

Ed Janoff, MDProfessor of Medicine, Immunology and Microbiology
University of Colorado Denver; Infectious Diseases

Dr. Janoff’s day job is to treat infectious diseases, and his passion is to prevent them. His research focuses on the development of systemic and mucosal immune responses, particularly antibodies, to provide primary protection against infection, infants, older adults and, more recently, people with Down Syndrome. He has studied mother-to-child transmission of HIV, pneumococcal pneumonia, influenza and, now, COVID-19. His goal is to understand and to teach others about what host factors are important in eliciting natural defense against respiratory infections and the protection provided by vaccines.

2020 Virtual Spring Performance | Be Beautiful Be Yourself Dance Program

June 12th, 2020 by Global Down Syndrome Foundation

GLOBAL Statement – Black Lives Matter Movement

June 5th, 2020 by Global Down Syndrome Foundation

Dear Families, Friends and Colleagues,

The Global Down Syndrome Foundation (GLOBAL) is deeply saddened by the senseless killing of George Floyd. We mourn for his family and every person who has been a victim of violent acts perpetrated in hateful discrimination.

Today we stand together with people from all over the world. We call for justice and demand systemic change that will protect us from racism, discrimination and brutality. Even beyond protection we demand real change that provides equity in research, medical care, education, the justice system, and every area that allows us freedom and the opportunity of good health, productivity, and happiness.

We maintain that if you believe in the inalienable rights for one group you must believe in them for all people. As Congresswoman Eleanor Holmes Norton said “You can’t be for women’s rights and not for disability rights. You can’t be for disability rights and not believe in racial equality. You can’t believe in racial equality and not in the LBGT community. The only true narrative is equity for all humankind.”

People with intellectual and developmental disabilities and their family members can relate to discrimination based on our own differences – and to a history that includes the Willowbrook State School and Aktion T4 murders.

At GLOBAL we condemn racism and discrimination in all forms. Black Lives Matter to us and to the world.

Wishing you health, safety and hope during these difficult but transformative times,
Michelle Sie Whitten and the GLOBAL Team

Make Your Voice Heard. We encourage you to help educate your communities by sharing information and resources on social media using the #BlackLivesMatter hashtag.

Lifespan of Resources will have a National and International Impact

Press Contacts:
GLOBAL: Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
NDSC: Rhonda Ricerhonda@ndsccenter.org | C: (678) 770-6641
IMDSA: Brandy Hellardbhellard@imdsa.org | C: (513) 571-4186

DENVER, ATLANTA, Stow MA. May 07, 2020– Today, Global Down Syndrome Foundation (GLOBAL), the National Down Syndrome Congress (NDSC), and the International Mosaic Down Syndrome Association (IMDSA) have announced that they will expand existing collaborations aimed at consolidating and creating Down syndrome resources across the lifespan for families.

The three national organizations will contribute funding, national and international distribution, and coordinated annual staffing associated with the Prenatal Testing & Down Syndrome Information pamphlet, the NDSC Annual Convention Global Down Syndrome Research Roundtable, the IMDSA Research & Retreat conference, and the Global Medical Care Guidelines for Adults with Down Syndrome.

“Our organizations have been collaborating for years on these important print and conference resources,” says Michelle Sie Whitten, President and CEO of GLOBAL. “To be able to make our existing collaborative resources available for free, in different modalities, and in many different languages, will have a wonderful national and international impact.”

“NDSC is proud to help support numerous Down syndrome initiatives and organizations that help our self-advocates and families,” says David Tolleson, Executive Director of NDSC. “To have a strategic plan to link our existing collaborations – from prenatal to adult care – is so important for our self-advocates and families dealing with issues across the lifespan.”

“I so appreciate this opportunity to ensure that people with mosaic Down syndrome, and the issues they face at various stages of life, will be included in future NDSC-GLOBAL national research and medical care roundtables,” said Brandy Hellard, President of IMDSA. “We are excited to help distribute the prenatal and adult guidelines at our IMDSA Research & Retreat conference and to dovetail our research to support future iterations of the guidelines.”

Expanding Collaborations:

Prenatal Testing & Down Syndrome Information pamphlet: This resource is a result of nationwide research that included input from 400 pregnant women and over 400 clinicians working with pregnant women. It is available for free in English, Spanish & Icelandic and will expand to several other languages in the next two years. Based on feedback from genetic counselors, the additional languages will include Arabic, Nepalese, Bengalese, French, and Greek.
NDSC Annual Convention Global Down Syndrome Research Roundtable: This resource attracts between 400-500 attendees each year. The collaboration will expand to have a virtual component that can reach more attendees and will include streams on mosaicism, autism, and other important but small sub-populations.
IMDSA Research & Retreat conference: This resource is an annual conference attracting attendees from all over the world each year. The collaboration will expand to have a virtual component that can reach more attendees and will also have a sub-focus of supporting the Global Medical Care Guidelines for Adults with Down Syndrome.
Global Medical Care Guidelines for Adults with Down Syndrome: This resource will be published after four years of work incorporating eleven authors who are the lead clinicians serving adults with Down syndrome across the United States. The collaboration will include joint professional surveys and concerted support for guidelines questions that have little or no research today.

To access the resource, families, friends and professionals can visit the websites of GLOBAL, NDSC, and IMDSA.

Global Down Syndrome Foundation (GLOBAL)
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome.

National Down Syndrome Congress (NDSC)
The National Down Syndrome Congress (NDSC) is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome.

International Mosaic Down Syndrome (IMDSA)
International Mosaic Down Syndrome Association (IMDSA) is designed to provide support, information and research to any family, individual or professional whose life has been affected by mosaic Down syndrome.

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Support our Dare to Ride Team! 2020 VIRTUAL Courage Classic

May 1st, 2020 by Global Down Syndrome Foundation

GLOBAL’s Dare to Ride Team for the 2020 Courage Classic VIRTUAL bike tour on July 18-19! Courage Classic is an annual fundraiser for Children’s Hospital Colorado, and GLOBAL’s Dare to Ride Team designates its funds to the Anna and John J. Sie Center for Down Syndrome at the hospital.

COVID-19 UPDATE: After careful consideration, Children’s Hospital Colorado Foundation has decided to transition this year’s Courage Classic bicycle tour to a virtual celebration. While we were hopeful this year’s Courage Classic would take place as usual in Copper Mountain, we agree that this is the best option given the current public health landscape.

Please consider supporting our Dare to Ride Team in one or more of the following ways:

    1. Join our Virtual Team

  • Our Dare to Ride Team consists of self-advocates, family members, and community supporters who are passionate about supporting medical care for children with Down syndrome.
  • Fueled by their network of supporters, each rider contributes to our team goal of $50,000 through online peer-to-peer fundraising. There is no registration fee for 2020.
  • This year’s tour format broadens the possibilities of participation – You can ride, spin, run, hike, walk, and more while social distancing outside or staying in, all to support the Sie Center! Register today!
  • 2. Donate to the Team

  • Cheer on those who are going the distance with a gift of $10, $25, $50, or $100! Any amount, small or large, has a great impact on our community.
  • Visit our Dare to Ride Team webpage to ensure that all funds raised support the Sie Center.
  • Support a specific rider or the team as a whole
    • THANK YOU! The Sie Center is part of the GLOBAL family and provides the highest standard of care to pediatric patients with Down syndrome from 28 states and 10 countries.

    • Fastest growing pediatric medical care center for children with Down syndrome based at the top ten children’s hospital, Children’s Hospital Colorado.
    • Provides best clinical care and therapeutic intervention to over 1,800 patients.
    • Largest number of pediatric clinics of any Down syndrome facility in the U.S., including: Mental Wellness, Medical Care, Infant Care, Telemedicine, School Age/Education, Sleep, ENT, and Feeding and Swallowing.
    • Largest number of pediatric clinics of any Down syndrome facility in the U.S., including: Mental Wellness, Medical Care, Infant Care, Telemedicine, School Age/Education, Sleep, ENT, and Feeding and Swallowing.
    • Collaborative and ground-breaking research on co-occurring conditions in children with Down syndrome such as aspiration and dysphagia (swallowing difficulties).
    • Other specialties offered range from physical, speech and occupational therapy, to education advocacy.

    If you have any questions, please contact events@globaldownsyndrome.org or 720-548-5619.

    100% of the proceeds will go to the lifesaving and life-changing care at the Sie Center.

    View Photos

140 Organizations Help Ensure People with Disabilities Will Receive Equitable Treatment under Colorado’s Newly Published “Critical Care Triage Guidance for Crisis Standards of Care”

Press Contacts:
GLOBAL: Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832
CCDC: Julie Reiskinjreiskin@ccdconline.org | C: (303) 667-4216
The Arc of Colorado: Christiano Sosacsosa@thearcofco.org | C: (970) 219-5925

DENVER, April 9, 2020 – The Governor’s Expert Emergency Epidemic Response Committee developed Crisis Standards of Care (CSC) after collaboration with experts and communities. Governor Polis has authorized the Colorado Department of Public Health and Environment to enact the standards when or if necessary.

The Colorado Cross Disability Coalition (CCDC), The Arc of Colorado, and over 140 organizations thank Gov. Jared Polis for ensuring that people with disabilities and other vulnerable populations receive equitable care under the CSC during the COVID-19 epidemic and other crisis situations.

Specifically, the revised CSC Plan provides standards that hospitals and other health care practitioners should implement once activated by the Chief Medical Officer for the Colorado Department of Public Health and Environment (CDPHE): (1) disallow medical “rationing” based on disability alone, (2) prevent other discrimination by establishing a blinded triage process, (3) specify that all hospitals in Colorado have a plan for providing effective communication accommodations with/for people who are disabled, and (4) clarify that no person who uses a ventilator as part of their regular care will have their ventilator taken away or receive less than equitable care.

“We are grateful to Gov. Polis and his team for their leadership in waging the war against COVID-19 and for ensuring that American civil rights and ethical values are upheld – even, and especially, when it comes to emergencies where medical care resources may become scarce and hard decisions must be made,” says Julie Reiskin, Executive Director of the CCDC.

“Every resident in this state deserves and should receive equitable care, even during the most uncertain of times,” says Lt. Governor Dianne Primavera. “Our Crisis Standards of Care guidelines are informed by ethicists, physicians, and experts, including those in the Colorado disability community who have been intimately involved with the response to the COVID-19 pandemic. When a crisis like this hits, we must protect everyone’s rights, civil liberties and health.”

“My family and I were appalled when we learned some states are creating policies that discriminate against people with disabilities and would absolutely jeopardize the life of my daughter,” says Dominic Capuano, father of a 12-year-old with Down syndrome from Littleton, Colorado. “We are just so grateful that our Governor, the CCDC, the Arc of Colorado, and the Global Down Syndrome Foundation are getting this out right before the peak of COVID-19 so there is no doubt that our Clarissa can get the care she needs if she needs it.”

While Reiskin acknowledges that some further revisions may be needed to the guidelines around care allocation on the basis of resource-utilization requirements/duration of mechanical ventilation, Colorado’s CSC Plan is authorized through executive order of the Governor for implementation by CDPHE’s Chief Medical Officer. Activation of crisis standards in the Plan provides the legal authorization for its implementation and use in health care settings, in addition to liability protections for those providers that follow its terms.

The Colorado CSC Plan provisions are also in stark contrast to those in other states, which in two cases specifically state that people with disabilities or medical conditions using a ventilator could have their ventilator taken away so that a more able-bodied person can be treated for COVID-19.

The Arc and the Center for Public Representation (CPR) have taken the lead with other disability organizations to file complaints to the U.S. Department of Health and Human Services Office of Civil Rights (OCR) against the states of Alabama, Kansas, Pennsylvania, Tennessee, and Washington for publishing or having COVID-19 related guidelines that would blatantly and illegally discriminate against people with disabilities.

Under the Alabama Department of Public Health’s Emergency Operations Plan, for children and adults, hospitals are ordered to “not offer mechanical ventilator support for patients” with “severe or profound mental retardation,” “moderate to severe dementia,” and “severe traumatic brain injury.”

In Kansas, the state recently developed a protocol called the “Toolkit for COVID-19.” The protocol specifically withholds life-saving treatment from patients based on their disability diagnosis – without an individualized assessment of their prospects for recovery – including people with “advanced untreatable neuromuscular disease,” people with “advanced or irreversible immunocompromise,” and people with some forms of cancer. In addition, hospitals could take away ventilators from individuals with disabilities or medical conditions who regularly use their own ventilators.

The Interim Pennsylvania Crisis Standards of Care for Pandemic Guidelines were just published on March 22, 2020 and discriminate against and jeopardize the lives of people with disabilities. For children and adults, the “scoring” of who gets care and who doesn’t takes into account long-term survival. The guidelines also discriminate against people with preexisting conditions that are disabilities and those with “severely life-limiting” co-morbid diagnoses, which can be left to interpretation.

The standing Guidelines for the Ethical Allocation of Scarce Resources in Tennessee exclude many people with disabilities from critical care, including ventilators. They further exclude people with metastatic cancer, some people with dementia, and some people with traumatic brain injury.

In Washington state, the Department of Health published descriptions of the goals and flow charts associated with emergency COVID-19 treatment that mirror the existing policy of the state-run University of Washington Medical Center (UWMC). Under this policy, the priority would be to uniformly treat people who are younger and healthier and to leave those who are older and sicker—including people with disabilities—to die.

According to The Arc and the CPR, all five states have protocols or guidelines in place that discriminate against people with disabilities and violate federal disability rights laws including the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (Section 504), and Section 1557 of the Affordable Care Act (ACA), and places the numerous lives at serious risk.

“Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism,” says Roger Severino, OCR Director. “HHS is committed to leaving no one behind during an emergency and helping health care providers meet that goal. Persons with disabilities, with limited English skills, and older persons should not be put at the end of the line for health care during emergencies.”

OCR has issued guidelines and statements underscoring that the policies associated with these states are aberrations in humanity and ethics, violate federal law, and that legal action can be taken if these policies are carried out.

The 140+ disability organizations that helped result in an ethical CSC guideline in Colorado includes the Colorado Cross Disability Coalition, The Arc of Colorado, arc Thrift Stores, Global Down Syndrome Foundation (GLOBAL), Anti-Defamation League (ADL), American Civil Liberties Union (ACLU), Atlantis Community, Inc., The Denver Foundation, Special Olympics Colorado, El Grupo Vida, One Colorado, Atlantis ADAPT, Disability Law Colorado, and Alliance Colorado.

Learn more about how you can help and where you can file a complaint if you believe you are facing discrimination in COVID-19 or other care.

The Colorado Cross-Disability Coalition (CCDC)
The Colorado Cross-Disability Coalition is the largest disability rights organization in Colorado that is run by and for people with all types of disabilities with a mission to advocate for social justice.

The Arc of Colorado
The Arc of Colorado promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

Global Down Syndrome Foundation (GLOBAL)
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).