IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
CONNECTING
VENTILATOR USERS,
HEALTH PROFESSIONALS,
AND INDUSTRY
IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
VENTILATOR-ASSISTED LIVING
VOLUME 39, NUMBER 1
SPRING 2025

For nearly 50 years, Section 504 of the Rehabilitation Act has been a cornerstone of disability rights in the United States. This landmark legislation, enacted in 1973, prohibits discrimination against individuals with disabilities in programs and activities that receive federal funding. It laid the foundation for future protections, including the Americans with Disabilities Act (ADA). However, recent legal and political challenges have placed Section 504 under threat, raising concerns about the future of accessibility and inclusion for millions of Americans.......................................................MORE​
CONNECTING
VENTILATOR USERS,
HEALTH PROFESSIONALS,
AND INDUSTRY
ADDITIONAL SECTIONS
Advocacy
Educate, discuss, take action
Networking
Sharing the work of others
Recent Relevant Publications
Summaries, links to selected professional, disability, disease journals and newsletters
Educational Opportunities
Conferences and webinars for health professionals and ventilator users
Ventilator-Assisted Living
Vol. 39, No. 1, Spring 2025
Editor: Brian Tiburzi
Designer: Brian Tiburzi
ISSN 1066-534X
© 2025 Post-Polio Health International.
Permission to reprint must be obtained from Post-Polio Health International (PHI) at info@post-polio.org.
Ventilator users, health professionals, non-profits, company representatives – send comments and updates to info@ventusers.org.
The Threat to Section 504:
What’s at Stake for the Disability Community
For nearly 50 years, Section 504 of the Rehabilitation Act has been a cornerstone of disability rights in the United States. This landmark legislation, enacted in 1973, prohibits discrimination against individuals with disabilities in programs and activities that receive federal funding. It laid the foundation for future protections, including the Americans with Disabilities Act (ADA). However, recent legal and political challenges have placed Section 504 under threat, raising concerns about the future of accessibility and inclusion for millions of Americans.
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The Nature of the Threats
Seventeen Republican-led states, spearheaded by Texas, have recently filed a lawsuit challenging a new federal rule that classifies gender dysphoria as a disability under Section 504 of the Rehabilitation Act. This rule, introduced by the Biden administration, requires federally funded entities to provide accommodations for individuals with gender dysphoria, extending protections similar to those already granted to people with other disabilities. The states argue that this regulation imposes undue financial and administrative burdens and coerces them into compliance by threatening the loss of federal funding. They also contend that the federal government has overstepped its authority by broadening the definition of disability.
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Disability rights advocates and families of individuals with disabilities have expressed concern that the lawsuit could have far-reaching consequences. Although the attorneys general involved insist their challenge is limited to the gender dysphoria rule, some fear that language within the lawsuit could set a precedent for undermining Section 504 as a whole. If the courts rule broadly against the federal government’s authority to interpret and enforce disability protections, it could weaken longstanding rights for individuals with disabilities, potentially restricting access to essential accommodations and services.
As this legal battle unfolds, its implications extend beyond the issue of gender dysphoria. A ruling that limits the enforcement of Section 504 or narrows the definition of disability could impact millions of Americans who rely on these protections. Advocates and policymakers continue to closely monitor the case, emphasizing the need to preserve the hard-won rights established over the past five decades.
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Impact on the Disability Community
If the lawsuit against Section 504 results in a ruling that weakens federal enforcement or narrows the definition of disability, it could have serious consequences for individuals living with a disability. Here are some specific ways this could impact the disability community:
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Healthcare Access: If hospitals and clinics receiving federal funding are no longer required to accommodate certain disabilities under Section 504, patients who need ventilators or other assistive devices might face increased barriers to receiving necessary care. A hospital could argue that it is not obligated to provide specialized equipment or trained staff, making emergency and routine medical care riskier for individuals with complex medical needs.
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Education: Students with disabilities, including those who require ventilators, currently rely on Section 504 to ensure schools provide accommodations such as individualized learning plans, assistive technology, and personal aides. If the law is weakened, schools could reduce or eliminate these supports, making it harder for students with disabilities to receive a quality education in an inclusive setting.
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Employment Protections: Section 504 ensures that employers receiving federal funding, such as government agencies and contractors, provide reasonable accommodations for employees with disabilities. A weaker Section 504 could allow employers to deny workplace adjustments like remote work options, flexible hours, or accessibility modifications, forcing individuals with disabilities out of the workforce.
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Public Accommodations and Transportation: Public transportation services that receive federal funding, such as buses and trains, must be accessible under Section 504. If these requirements are loosened, individuals who use wheelchairs, ventilators, or other assistive devices could face increased barriers to mobility, making it harder to travel to work, school, or medical appointments.
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Home and Community-Based Services: Many people with disabilities rely on Medicaid-funded home care services to live independently rather than in institutional settings. If Section 504’s enforcement weakens, states might reduce these programs, forcing individuals into nursing homes or hospitals against their wishes, severely impacting their quality of life.
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Legal Precedent for Future Rollbacks: A broad ruling against Section 504 could set a precedent for challenging other disability rights laws, including the Americans with Disabilities Act (ADA). This could lead to further restrictions on accessibility requirements, workplace protections, and legal recourse for discrimination.
In summary, the potential weakening of Section 504 threatens the ability of individuals with disabilities to access healthcare, education, employment, transportation, and independent living. The disability rights movement has long fought for these protections, and advocates worry that this lawsuit could undo decades of progress.
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How We Can Take Action
It is crucial for ventilator users and allies to stay informed and engaged. Here are a few ways to advocate for the protection of Section 504:
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Raise Awareness: Share information about these threats with your community and legislators.
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Contact Elected Officials: Urge your representatives to oppose efforts that would weaken Section 504 and other disability rights laws.
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Join Advocacy Groups: Organizations such as the National Disability Rights Network (NDRN) and the American Association of People with Disabilities (AAPD) are actively working to defend these protections.
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Tell Your Story: Personal experiences can be powerful in illustrating the importance of Section 504. Whether through social media, testimony, or community forums, sharing how these laws impact your life can influence policy decisions.
Conclusion
The challenges facing Section 504 are real and significant, but the disability community has a long history of resilience and advocacy. Protecting this foundational law is essential to ensuring equal opportunities and rights for ventilator users and all individuals with disabilities. By staying informed, speaking out, and taking collective action, we can work to safeguard the hard-won protections that so many depend on.
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For updates on disability rights issues and how they affect ventilator users, stay connected with our newsletter and advocacy efforts. Your voice matters!
ADVOCACY
Proposed Changes to Education Department Raise Concerns for Students with Disabilities
Twenty-three U.S. senators have raised serious concerns over President Trump’s executive order to dismantle the U.S. Department of Education and transfer “special needs” programs to the Department of Health and Human Services (HHS). In a letter to Education Secretary Linda McMahon, lawmakers warned that such a move would undermine decades of progress by shifting educational responsibilities to a health agency ill-equipped for this role. They stressed that the Department of Education has unique expertise in supporting inclusive education and enforcing the Individuals with Disabilities Education Act (IDEA), which could be lost if authority is transferred without Congressional action.
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The senators emphasized the dangers of returning to a time when disabilities were treated purely as medical issues, often resulting in institutionalization and exclusion from public education. They are demanding transparency about potential program cuts and staffing changes, and are urging the Department of Education to clarify how it will continue to fulfill its legal obligations to students with disabilities. As of now, no official steps have been taken to move federally mandated special education programs, and the future of IDEA oversight remains uncertain. Young people who use home mechanical ventilation and their families should stay informed and speak up to protect their educational rights.
Federal Budget Deal Leaves Disability Programs in Limbo
Congress last month passed a funding bill to avoid a government shutdown, but advocates are raising concerns about its implications for disability services. While overall funding for federal agencies will remain relatively level through September, lawmakers chose not to specify how much money should be directed toward key programs like special education, Medicaid, and vocational rehabilitation. Instead, agencies have been given broad discretion to decide how to allocate funds.
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Advocates worry that this lack of transparency creates uncertainty for programs serving people with disabilities. With $13 billion in non-defense cuts and no detailed budget tables, organizations fear that essential services — particularly those not seen as top priorities by the current administration — could be reduced or overlooked. As agencies now determine funding levels internally, disability communities are calling for clearer guidance and accountability to ensure continued access to education, health care, and community supports. Read more here.
DOJ Withdraws Key ADA Guidance Documents, Raising Accessibility Concerns
The U.S. Department of Justice has rescinded 11 guidance documents that helped clarify how businesses and public spaces should comply with the Americans with Disabilities Act (ADA), some of which had been in place for over two decades. This move, part of a broader initiative from the Trump administration to reduce regulatory burdens, includes the removal of a 10-part manual for business owners and several COVID-era clarifications about access to healthcare, service animals, and mask exemptions.
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While the Justice Department says the change will help businesses focus on “current” guidance and promote accessibility improvements through tax incentives, disability advocates warn the rollback may create confusion. Without these documents, it could become more difficult for people with disabilities—and the businesses that serve them—to understand and apply the ADA’s requirements. Advocates emphasize that while the law itself has not changed, removing these resources risks weakening compliance and increasing barriers to access in everyday life.
NETWORKING
Spotlight on EP Magazine’s Annual Healthcare Issue
This quarter’s Exceptional Parent (EP) Magazine offers valuable insights into the real-world healthcare experiences of individuals with disabilities and their families. The Annual Healthcare Issue dives into the challenges many face when accessing essential services — from routine medical and dental appointments to navigating emergency care and hospital policies.
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With a focus on practical advice and lived experience, this issue highlights the importance of disability-aware healthcare systems and better training for providers. For individuals with neuromuscular disorders who use home mechanical ventilation, these stories and strategies may offer both reassurance and tools for advocacy.
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Check out EP Magazine’s Annual Healthcare Issue to stay connected and informed on the evolving landscape of disability and healthcare.
Call for CCHS Research Proposals – 2025 Grant Cycle
The CCHS Network is now accepting applications for its 2025 Research Grant Award, supporting innovative research that advances understanding or treatment of Congenital Central Hypoventilation Syndrome (CCHS). Grants of $50,000 to $100,000 for one year will be awarded to 2–4 selected projects. They are seeking research proposals that highlight the core biology of central and peripheral respiratory mechanisms, emphasize translation of basic findings into potential treatments, and focus on real-world healthcare improvements to enhance quality of life for individuals with CCHS.
Deadline: July 31, 2025
Start Date: January 1, 2026
More Info: https://cchsnetwork.org/cchs-network-call-for-research-2025/
RECENT RELEVANT PUBLICATIONS
An educational programme for home mechanical ventilation in motor neuron disease
Riva-Rovedda F, Clari M, Conti A, Esposito T, Tabbia G, Mattei A, Calvo A, Solidoro P, Dimonte V.
“Respiratory failure represents the leading cause of death among people with motor neuron disease (MND). Home mechanical ventilation supports respiratory function, but its management places a significant demand on patients and informal caregivers. The need for consistent support to deal with home mechanical ventilation is recognised. Regardless, specific educational interventions are infrequently reported. Within its multidisciplinary clinical care pathway, the Regional Expert Centre for MND of a Northern Italy university hospital offers patients and their caregivers an educational programme on how to deal with noninvasive ventilation (NIV) and invasive mechanical ventilation (IMV) at home. NIV education is usually performed in an outpatient setting. Pneumologists and nurses train patients and caregivers about ventilator functions, management of respiratory interfaces, inhalation therapy, skin integrity preservation and respiratory deterioration detection, while respiratory therapists train patients and caregivers about the use of an assisted cough device. IMV education is performed at the hospital. Respiratory therapists, supported by nurses, train caregivers about ventilator functions, management of tracheostomy cannula, tracheal suction, inhalation therapy and use of assisted cough devices. Finally, a certification of the skills acquired is released. Future studies should assess the effectiveness of this programme in terms of satisfaction and clinical outcomes.”
Breathe (Sheff). 2025 Feb 25;21(1):240094. doi:10.1183/20734735.0094-2024
Saving lives, one breath at a time: The key role of noninvasive ventilation interfaces
Praud JP.
“Home noninvasive ventilation (NIV) for children must consider the key role of the interface, in addition to selecting the ventilatory mode and settings. Acceptance and adherence to NIV often depend on the time spent selecting the right mask, as well as on regular and careful attention to preventing and addressing various issues that arise during NIV.”
Pediatr Pulmonol. 2025 Mar;60 Suppl 1(Suppl 1):S117-S119. doi:10.1002/ppul.27306
Initiation of noninvasive ventilation in patients with amyotrophic lateral sclerosis
Jimenez JV, Tang MJ, Wilson MW, Morrison AH, Ackrivo J, Choi PJ.
“Noninvasive ventilation (NIV) has been shown to improve survival and symptom burden in patients with amyotrophic lateral sclerosis (ALS). However, limited data exist regarding the clinical and physiological parameters at the time of NIV initiation. This study aimed to describe the clinical characteristics and respiratory physiological markers in a cohort of ALS patients with chronic respiratory failure.”
Muscle Nerve. 2024 Nov;70(5):1099-1103. doi:10.1002/mus.28250
EDUCATIONAL
OPPORTUNITIES
CHEST 2025

CHEST 2025 will be held in Chicago, Illinois, October 19-22, 2025. The meeting promises to deliver the most up-to-date education in clinical pulmonary, critical care, and sleep medicine with world-class speakers, hands-on simulation opportunities, interactive educational games, and much more. More information is available on their site.
ATS 2025
The American Thoracic Society (ATS) 2025 International Conference will take place May 16–21, 2025, at the Moscone Center in San Francisco, California. As the premier event in pulmonary, critical care, and sleep medicine, the conference will bring together thousands of clinicians, researchers, and health professionals from around the world to explore the latest scientific advances, clinical practices, and innovations in respiratory health. Find out more and register at https://conference.thoracic.org.
