Ventilator-Assisted Living©

Summer 2004, Vol. 18, No. 2

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In Memoriam: Ira Holland, 1939-2004

Photo of Ira Holland in 1995IVUN's long-time friend and supporter Ira Holland died suddenly on March 16, 2004. Ira bequeathed $15,000 to IVUN "solely to disseminate information about portable ventilators." Ira's fascinating biography, which can also be read as a history of noninvasive ventilation and the independent living movement, is online.

Ira was a true visionary in promoting independent living for people with disabilities and ventilator users. Concepts of Independence, the program that he established in New York City, enabled people with disabilities to direct and manage their personal care and empowered countless individuals to live interdependently within their communities. In the last few years, his work as a consultant provided an invaluable perspective for home health agencies and ventilator equipment manufacturers.

Ed Litcher, a good friend of Ira's, said, "The lessons we can draw from Ira's life will depend upon the parts we see. He was a disabled man living and loving in the community. He was an advocate who cared about the independence and empowerment of people with disabilities. He was a friend, a neighbor and a mentor to many, but I think that the basic lesson we can all draw from his life is that life is to be lived. Find your path and attack. As Ira himself said, 'All things are possible.' "


Respironics and IVUN's Ventilatory Equipment Exchange

In response to ventilator users of iron lungs who cannot make the transition to alternative noninvasive equipment, Respironics Colorado issued a statement on May 10, 2004. "In an effort to continue to support these patients as long as possible, Respironics Colorado will put all returned iron lungs through a comprehensive Quality Assurance check, and providing the device meets standards, it will be held in a rental pool in the event one is needed in an emergency situation by those opting to remain on the iron lung. Returned devices, which do not pass the overall QA check, will be held as parts resources. The reality, however, is that this may only provide a limited and unpredictable source of replacement product and repair parts and the best long term resolution for patients may be to transition to an alternative therapy." The complete statement and a statement by the manufacturer of the iron lung, J.H. Emerson Co., is available online. For more information, contact Wendy Yates, Privacy and Compliance Leader, Respironics Colorado, 800-659-9235, ext. 3414.

IVUN is working with Respironics Colorado in facilitating the exchange of equipment. People wanting to donate ventilatory equipment and aids can advertise their offerings on IVUN's website by connecting to "IVUN's Ventilatory Equipment Exchange."

People can view available offers and make arrangements to obtain equipment and/or they can submit a description of equipment needs along with their contact information.


Potpourri

ResLinkfrom ResMed Corp. records data on as many as ten different parameters, including oximetry on the AutoSet Spirit™, S7 Elite and VPAP III Series bilevels for 10 hours each night (30 days continuously). ResLink also collects a summary of up to one year of data stored in each flow generator. Data collection includes tidal volume, leak, apneas, hypopneas, minute ventilation, flow limitation, snore, oxygen saturation, pulse and breath rates, etc. The module fits on the back of the bilevel units. Physicians, home health care equipment suppliers and the individual using the unit can all review the data to fine-tune the settings and troubleshoot.

OSA/CPAP users can find more information on these websites —
www.healthysleep.com and www.myresmed.com.

Medicaid Waivers. The website of the National Association of State Medicaid Directors (NASMD) explains the different Medicaid waivers - 1915 (b), 1915 (c), 1115 - and lists those available in each state: www.nasmd.org/waivers/waivers.htm.

Toll-Free Hotline for Airline Disability-Related Problems. U.S. Department of Transportation, Aviation Consumer Protection Division. 7 a.m..-11 p.m. EST, daily. 800-778-4838 voice; 800-455-9880 TTY.

The Association for Respiratory Technicians and Physiologists is the British equivalent of the American Association for Respiratory Care (the U.S. organization for respiratory therapists). The ARTP's website — www.artp.org.uk — posts a comparison of noninvasive ventilators (mostly pressure support and bilevel units used at night).

Chin/Neck Support. Some people with ALS and post-polio syndrome need help keeping the head and neck upright and straight. One option is the Chin-Neck Bandage made by Caromed (distributed by Byron Medical, 800-777-3434, www.byronmedical.com). It is made of stretch fabric that comfortably supports the head.

photo of a smiling Gary McPhersonRolling On: The Story of the Amazing Gary McPherson by Gerald Hankins profiles ventilator user and respiratory polio survivor Gary McPherson, currently executive director of the Canadian Centre for Social Entrepreneurship in Alberta, Canada. The black and white photos are superb, supporting a well-written text that chronicles the polio epidemic in Canada, Gary's life and his drive for independent living. Paperback, 216 pp., black and white photos. Available from the University of Alberta Press, $24.95 (USD) plus shipping and handling.

Contact Laraine Coates, University of Alberta Press, locates@ualberta.ca, www.uap.ualberta.ca/UAP.asp?lid=41&bookid=546. Also available through Michigan State University, 517-355-9543, toll free fax 800-678-2120, or msupress@msu.edu.

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