INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
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VOLUME 34, NUMBER 4
This past July marked the 30th anniversary of the passage of the Americans with Disabilities Act (ADA). This landmark piece of legislation was made possible through years of pressure from disability rights activists. Among these were leaders like Ed Roberts, who himself used mechanical ventilation. These were people who knew they needed and deserved the same access as their non-disabled peers in order to realize their full human potential................MORE
IVUN is pleased to announce that we've expanded . When we created this site in 2015, it was meant to showcase the new digital version of Ventilator-Assisted Living, as well as IVUN's other publications - the Resource Directory for Ventilator-Assisted Living, the Home Ventilator Guide, and "Take Charge, Not Chances.".................................................................................MORE
Vol. 34, No. 4, August 2020
Editor: Brian Tiburzi
Designer: Brian Tiburzi
Permission to reprint must be obtained from Post-Polio Health International (PHI) at .
This past July marked the 30th anniversary of the passage of the Americans with Disabilities Act (ADA). This landmark piece of legislation was made possible through years of pressure from disability rights activists. Among these were leaders like Ed Roberts, who himself used mechanical ventilation. These were people who knew they needed and deserved the same access as their non-disabled peers in order to realize their full human potential.
The ADA allowed people with disabilities to challenge societal barriers that excluded them from their communities and would have a profound impact in moving America towards being a more inclusive society.
Passage of the ADA in 1990 was a major victory for disability community, but it didn't represent an endpoint in the struggle to build a more inclusive society. Like most major pieces of legislation, the ADA had its weaknesses and was vulnerable to attack from those who sought to weaken the impact of the law.
The ADA used a definition of disability based on the definition used in the Rehabilitation Act of 1973, which stated that an individual with a disability was someone who has a physical or mental impairment that substantially limits one of more major life activities, a record of such an impairment, or is regarded as having such an impairment.
Those that sought to undermine the law seized on this vague language. What did it mean to "substantially limit" a major life activity? Indeed, what even qualified as a "major life activity?"
Beginning in 1999 a series of Supreme Court decisions began to narrow this definition. Cases increasingly began to center on whether someone met the definition of having a disability, rather than focusing on issues of accessibility.
The ADA Amendments Act 0f 2008 (ADAAA) was an attempt by Congress to restore the original intent of the law. It in effect broadened the legal definition of who could claim to have a disability. Below are the thoughts on both the ADA and the ADAAA of 2008 on the occasion of the 20th anniversary of the passage of the ADA by the late Nancy Baldwin Carter, a frequent PHI and IVUN contributor and founder of the Nebraska Polio Survivors Association.
We’re talking civil rights here. Big Time. “Our crowning achievement of the 20th Century,” as Justin Dart, Jr. called it—the passage of the Americans with Disabilities Act—the ADA. On July 26 we celebrated its anniversary. Twenty years of freedom.
Immediately after the ADA went into effect, it became clear that this Act would alter more than the law. Attitudes all across the country began to change, as well.
People everywhere began to see us in a different light. A much-loved comic strip suddenly featured a popular teacher who used a wheelchair. Individuals with disabilities began popping up in TV commercials. Smiling strangers held a heavy door for us—or realized we had a place in line. We became visible.
Nancy Baldwin Carter
Of course challenges followed. Many of us remember the goofy Catch-22 court decisions that limited the ADA definition of disability to its most useless extreme. More than one piece of outrageous nonsense belched up by official detractors even left us concluding that the only people eligible for ADA protection against job discrimination would be those too disabled to work. Obviously, we needed to clarify.
So Congress moved in to tighten up the language in the ADA, making it harder to misinterpret, more difficult to distort. On September 25, 2008, the Amendments to the Americans with Disabilities Act was signed into law.
The purpose of this Act is “to restore the intent and protections of the Americans With Disabilities Act of 1990.” No more twisting what Congress meant out of shape by Supreme Court rulings or others’ wrong interpretations.
To begin with, the definition of disability remains the same (“an impairment that substantially limits one or more major life activities, a record of such an impairment, or being regarded as having such an impairment”), except in the Amendments, Congress makes it clear that this is to be understood in the broadest way possible.
Let there be no doubt. If I’m disabled because I have only one leg, but my loss has been corrected by the use of a prosthetic device—guess what? I’m still disabled. Some people’s idea that my impaired body is no longer disabled because I’m wearing a brace or because glasses improve my myopic vision, simply will not wash anymore.
Take a look at these Amendments online. Or perhaps better yet, start by clicking onto the PHI website’s informative article, “The ADA Amendments Act of 2008.” A word here, a phrase there—now nobody can miss the teeth in this Act. Look all the way through. Think about what we know about discrimination on the basis of disability. See how we view a “reasonable accommodation.”
Oh no, we’re not home free yet. There will still be those who try to ignore what’s right for those of us who are disabled. We have more changes to make, many roads left to travel. But we’re on our way.
Today the contest is different—we have the ADA to fight for us. Look at the outcome when a U.S. District Court reminded the State of Florida of the ADA-guided Olmstead decision (the Supreme Court’s 1999 integration mandate). When that state tried to install a quadriplegic into a nursing home instead of providing her with the required services allowing her to live at home, they lost the battle. ADA to the rescue.
The ADA has a way of convincing people of our mutual and equal worth, and that each one of us has a role to play in achieving this equality. Today we have ADA power to count on—thanks to legions of contenders from the disability world and our fighting, caring friends.
IVUN is pleased to announce that we've expanded . When we created this site in 2015, it was meant to showcase the new digital version of Ventilator-Assisted Living, as well as IVUN's other publications - the Resource Directory for Ventilator-Assisted Living, the Home Ventilator Guide, and "Take Charge, Not Chances."
Our main organizational site, , was built in 2007 and advances in technology and web design have made it increasingly difficult to update the site in a timely manner. Over the course of this year, we have been migrating content from the old site to . You will now see sections in the menu for Advocacy, Research, and Networking.
The expanded includes popular sections from the old site such as, Ask the Experts, Information on Flying with a Ventilator, and information about PHI/IVUN-funded research, as well as the aforementioned publications.
Beginning immediately, will be retired and users will be automatically redirected to this site.
PHI executive director Brian Tiburzi explained the reasons behind the decision, "We completely redesigned earlier this summer and felt IVUN's primary website should have a clean, easily navigable design, as well. We hope our members will have an easier time finding the information they need to successfully manage their health."
New Survey Examines Effects of Pandemic on Family Caregivers
A team of researchers from the National Rehabilitation Research and Training Center on Family Support and the University Center for Social and Urban Research at the University of Pittsburgh recently conducted a survey to identify the specific effects of the pandemic on families and family caregivers. The survey, which was conducted between April 15 and May 27, 2020, assessed the impacts of the pandemic on employment, financial well-being, social interactions, health behaviors, and physical and mental health.
Among caregivers, the Pittsburgh researchers found that 63 percent had seen an increase in their responsibilities for the family member they support. More than half reported that caregiving has become more emotionally difficult because of COVID-19.
Caregivers were more likely to report that their health and finances were worse since the pandemic started, that they had experienced anxiety and depression and are worried about getting COVID-19 than those without caregiving responsibilities.
The report recommends family caregivers be given increased support and assistance, and be specifically targeted in policy discussions and intervention/program planning.
Continuing Concern Over Bias in Pandemic Decision Making
Disability advocacy groups have been concerned about healthcare rationing since March, though early fears about needing to ration ventilators receded from the headlines as the supply increased and hospitalizations began to fall throughout May and into June.
The issue gained new attention in June, when an Austin, Texas, hospital halted treatment of a quadriplegic patient who contracted COVID-19 and moved him to hospice care, where he died. ADAPT of Texas submitted a complaint to HHS on behalf of the wife of the patient, Michael Hickson, in late July. ADAPT was seeking an investigation into the decision-making about the patient, which, they claimed, ran counter to his wife's wishes. The hospital disagreed, claiming it wasn't medically possible to save him.
Steven Spohn, a 39 years-old disability rights advocate who uses a ventilator due to spinal muscular atrophy, encapsulated the fear of many with a disability when he remarked on Twitter, "I've been stewing on this for a few days as I try to come up with the right words to explain to you how much of an underlying fear this scenario is for much of the disabled community. We live our entire lives in fear that one day a doctor will decide we just aren't worth it."
Now, concern has centered on Arizona, which issued a triage policy in June that critics say allows doctors to reject critically sick patients if they think they won’t live five years after a successful COVID-19 treatment. Critics worry the policy could allow doctors to reject critically ill patients and prioritize people based on their “opportunity to experience life stages."
Professional organizations have started to push back. The American College of Physicians President Jacqueline Fincher and American Medical Association President Patrice Harris published a letter stressing that when plans "rely on criteria that discriminate against categories of persons, notably, elderly individuals or individuals with disabilities, they are not ethically defensible” They wrote that even after the pandemic ends, work will still need to be done in order to "build a society that supports optimal nondiscriminatory healthcare for all."
Further Delays Sought for Electronic Visit Verification
Federal officials are being asked to pause the rollout of a new requirement that care providers electronically check in when assisting people with disabilities in light of the COVID-19 pandemic.
The Medicaid mandate known as electronic visit verification, or EVV, was part of the 21st Century Cures Act and was intended to cut down on fraud. It was scheduled to take effect at the beginning of this year, but nearly every state was granted a one-year good faith extension (GFE) giving them until January 2021 to come into compliance.
Those seeking a further delay say they understand the impetus to reduce fraud but argue that their resources and personnel have already been stretched thin by the pandemic, and now is not an opportune time to have to train support workers on EVV compliance.
COPD Pocket Consultant Guide App Track for people with COPD
The COPD Foundation announced an updated version of their Pocket Consultant Guide (PCG) mobile app. It features a new track for patients and caregivers in addition to the existing track for health care providers. This free app is designed to improve disease management and communication with a patient’s health care team. The new version of the app is available from the App Store and Google Play.
From Parent Project Muscular Dystrophy: 2020 Back-to-School Webinar Series
To help inform and empower families, PPMD recently hosted a back-to-school webinar series tackling questions and concerns about both in-person and virtual school scenarios. PPMD’s Care Team was joined by leading experts from our network of Certified Duchenne Care Centers, as well as families who are navigating this unprecedented time.
Home Mechanical Ventilators' Removal From Competitive Bidding 2021 Represents a Big Win for Respiratory Patients
“Peter Gay, MD, pulmonologist at the Mayo Clinic, Rochester explains, 'This action puts a halt for now on the bidding process and the planned roll-out date of January 2021, but we should be reminded this represents only a delay and not a complete elimination of this plan. The immediate fear regarding HMV for NIV use was that physicians would need to develop alternative care plans for their patients-- including the consideration of a much more intrusive tracheostomy; reducing quality of life and requiring major lifestyle change for many patients so this has, at the least, been delayed. Especially in the COVID recovery environment and the already disastrous consequences to many durable medical equipment (DME) providers, this should not interrupt the flow of home mechanical ventilation to those in need.'”
Washington Watchline, June 2020
Sobotka SA, Dholakia A, Agrawal RK, et al.
Discharge Practices for Children with Home Mechanical Ventilation Across the United States: Key Informant Perspectives
“Nearly all respondents' institutions (94%) required caregivers demonstrate independent care; the majority (78.4%) required two trained HMV caregivers. Three-fourths described codified discharge guidelines, including the use of a discharge checklist, assurance of home care, and caregiver training. Respondents described variable difficulty with obtaining durable medical equipment (DME), either due to insurance or DME company barriers.”
Ann Am Thorac Soc. 2020;10.1513/AnnalsATS.201912-875OC. doi:10.1513/AnnalsATS.201912-875OC
van den Biggelaar RJM, Hazenberg A, Cobben NAM, Gaytant MA, Vermeulen KM, Wijkstra PJ.
A randomized trial of initiation of chronic non-invasive mechanical ventilation at home vs in-hospital in patients with Neuromuscular Disease and thoracic cage disorder
“There is an increasing demand for Home Mechanical Ventilation (HMV) in patients with chronic respiratory insufficiency. At present, Non-invasive Ventilation (NIV) is exclusively initiated in a clinical setting at all 4 centres for HMV in The Netherlands. In addition to its high societal costs and patient discomfort, commencing HMV is often delayed due to lack of hospital bed capacity. . . . This nationwide, multi-centre study shows that HMV initiation at home is non-inferior to hospital initiation, as it shows the same improvement in gas exchange and HRQoL. In fact, from a patient's perspective, it might even be a more attractive approach.”
Chest. 2020;S0012-3692(20)31897-3. doi:10.1016/j.chest.2020.07.007
Willis LD, Lowe G, Pearce P, et al.
Transition From an ICU Ventilator to a Portable Home Ventilator in Children
“Alice Wong, 46, sees these biases too. She has a progressive neuromuscular disease that means she uses a ventilator, attached to her wheelchair, all the time. When hospitals started talking about rationing ventilators during the COVID-19 crisis for the most 'deserving' patients, Wong was angry but not surprised. At least 25 states have policies that could mean people with disabilities are less likely to get critical care if hospitals are overloaded, according to a report from the Center for Public Integrity. Six states’ triage plans allow doctors to take away ventilators from those, like Wong, who use them in everyday life to help other patients.”
Respir Care. 2020;respcare.07641. doi:10.4187/respcare.07641
The 26th Annual FOCUS Conference originally scheduled for September of this year has been pushed back to September 10-11, 2021. It will still take place in Memphis, Tennessee, at The Guest House at Graceland Hotel. Full details are available at https://foocus.com.
CHEST has announced that it will be holding their annual conference virtually October 18-21, 2020. More information, including pricing and details on how to register, are available at https://chestmeeting.chestnet.org. Dr. Anthony Fauci has been announced as the keynote speaker.
CCHS Network Family Conference 2021
The CCHS Network Family Conference will take place July 6-9, 2021 in Newport Beach, California. Family conferences foster a supportive and collaborative CCHS union between professionals and families, all with the intent of improving outcomes for CCHS patients. Rooms may be reserved at the Hyatt Regency Newport Beach.