18 Resources for Ventilator-Dependent Patients


18One of our recently admitted ventilator-dependent patients and her family were touring Independence Plus’s administrative office and said, “I think I can safely say our lives will truly be changed because of our partnership with Independence Plus. I wish we would’ve known about you three years ago!”

We frequently hear this from patients and their families. They wish they knew about us—or at least, they wish they had the access to the resources they learn about through Independence Plus—earlier.

Here’s an alphabetical list of some favorite resources for ventilator-dependent patients living at home. Click on the name of any resource below to find out more. Also, if we missed one of your favorite resources, please add it in the COMMENTS SECTION below!

3ELove: 3ELove’s unique wheelchair heart logo started the Disability Pride clothing company in Chicago. It has since grown into an international movement of acceptance.

Aaron’s Trach Page: Aaron’s Trach Page was created to help provide the highest quality home care for children with tracheostomies.

ALS Association (Greater Chicago Chapter): The ALS Association Greater Chicago Chapter offers patient services and support to the Amyotrophic Lateral Sclerosis (ALS) community.

American Spinal Injury Association: The American Spinal Injury Association (ASIA) is a member organization committed to establishing standards of excellence for Spinal Cord Injury (SCI) care, as well as promoting education, research, and collaboration among healthcare professionals, patients and their families.

Brain Injury Association of America: The Brain Injury Association of America is a nationwide advocacy organization working to advance brain injury prevention, research, treatment and education. To access the Brain Injury Association of Illinois, a statewide membership organization for people with brain injuries, click here.

Christopher & Dana Reeve Foundation: The Reeve Foundation is dedicated to curing SCI by funding innovative research and improving the quality of life for people suffering with SCIs. The Foundation’s website is a resource for SCI information, research, clinical trials, and quality of life grants.

Guidelines for Nurses Working in Home Care: The University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) recently issued their 2014-15 Guidelines for Nurses Working in Home Care. This resource provides important information for patients and families who utilize home nursing services and for nurses who work in home nursing.

International Ventilator Users Network: International Ventilator Users Network’s mission is to enhance the lives and independence of home ventilator users and polio survivors through education, advocacy, research, and networking.

Les Turner Foundation ALS Foundation: The Les Turner Foundation is a leader in research, patient care, and education for ALS and other motor-neuron diseases. Based in Chicago, the Foundation is one of the largest independent ALS organizations in the U.S.

Make a Wish® Illinois: Make a Wish grants wishes to children with life-threatening medical conditions to fill their lives with hope, strength, and joy.

MDA Association: The Muscular Dystrophy Association is the leading MDA not-for-profit organization. The MDA Association provides support and services to MDA families, funding for research, and community outreach and engagement.

The Miami Project to Cure Paralysis: The Miami Project is a comprehensive SCI research center and designated Center of Excellence at the University of Miami Miller School of Medicine. Miami Project researchers are currently conducting more than ten clinical trials for spinal cord and brain injuries.

MobilityWorks: MobilityWorks offers sales, service, and rentals for handicap accessible vans, and has locations throughout the continental U.S., including three in Illinois: Plainfield, Skokie, and Villa Park.

Paralyzed Veterans of America: The Paralyzed Veterans of America was founded by a group of veterans with spinal cord injuries. Today, Paralyzed Veterans operates with a mission to change lives and build brighter futures for seriously injured heroes.

Ronald McDonald House Charities® of Chicagoland and Northwest Indiana: Ronald McDonald House Charities believes in keeping families together, especially during times of need. Ronald McDonald has five houses in the area, which provides accommodations for 153 families every night near Advocate Children’s Hospital, Central DuPage Hospital, Loyola University Medical Center, University of Chicago Comer Children’s Hospital, and Ann & Robert H. Lurie Children’s Hospital.

SCI-Info-Pages.com: SCI-Info-Pages.com is a free online resource for people who are living with SCIs. This site is updated frequently with news, caregiver information, and clinical trial information.

Special Spaces Chicagoland: Special Spaces Chicagoland’s mission is to create dream bedrooms for children with life-threatening medical illnesses.

Spinal Cord Injury Association of Illinois: Spinal Cord Injury Association of Illinois provides information and support resources for people paralyzed by trauma and medical conditions and their family members as well as health care professionals who serve the SCI community.

Did we miss any of your favorites? Tell us below!

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