Advocacy
IVUN educates, discusses, and takes action to protect the rights and well-being of ventilator users.
Advocacy – "Giving aid to cause: active verbal support for a cause or position."
IVUN's Advocacy Roots
Gini Laurie, founder of International Ventilator Users Network, an affiliate of Post-Polio Health International (formerly Gazette International Networking Institute), earned the moniker of "grandmother of the independent living movement" for her years of gathering names and experiences of people with significant disabilities.
Laurie loved "learning new things" and early on recognized the power of information and peer support. Her newsletters, which evolved into an annual journal in the '70s and '80s, featured letters from her "friends around the world," who shared the life stories – how they got an education, became employed, fell in love and had families. She delighted in connecting people with common problems and interests and set back and watched them "go to work."
Personal Advocacy
Advocacy happens on many levels and IVUN encourages Members to utilize its comprehensive information and extensive network of people and organizations to advocate for themselves.
Community Advocacy
IVUN wants its Members to achieve and maintain independent living, but also asks its Members to be active in solving the larger issues facing all people with disabilities.
Advocacy Areas
IVUN works across multiple fronts to ensure ventilator users can live independently with dignity.
Protecting Access to Care
IVUN advocates for policies that ensure ventilator users have access to quality health care, equipment, and supplies. We work to prevent cuts to Medicare, Medicaid, and other programs that serve home ventilation users.
Disability Rights
We promote and defend the rights of people with disabilities, including the right to live independently in the community with the supports they choose. IVUN supports the Americans with Disabilities Act and similar legislation worldwide.
Home & Community-Based Services
IVUN champions the expansion and improvement of home and community-based services (HCBS) that allow ventilator users to live at home rather than in institutions. This includes adequate funding for personal attendants and in-home nursing.
Independent Living
IVUN supports the right of ventilator users to live in the community with self-determination, equal opportunities, and self-respect — making the same choices and having the same control as everyone else.
Learn MoreAdvocacy Resources
Specialized resources for ventilator users.
Flying with a Ventilator
Resources and guidance for air travel, including airline policies, manufacturer certifications, and government regulations protecting the rights of ventilator users who fly.
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Take Charge, Not Chances
A comprehensive emergency preparedness portfolio with checklists and documents for ventilator users and caregivers.
Learn MoreDisability Rights Organizations
Other advocacy organizations working to protect and expand disability rights.
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