INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
VOLUME 37, NUMBER 2
In 1991, David Carter, a hospital administrator with a respiratory therapy background, and Nancy McCurdy, a child life specialist, developed the idea of providing a summer overnight camping experience for children with tracheostomies and those requiring technological and ventilator assistance. They were determined to make the outdoors accessible to children whose unique and complex medical needs made it difficult to participate in the summer camp experiences that many of their peers were able to enjoy. Their vision resulted in the establishment of CHAMP Camp in the summer of 1991 in Ashley, Ohio.
The camp, now located at Bradford Woods in Martinsville, Indiana, hosts more than two dozen children each summer aged 6 to 18 years old who require ventilator assistance, including some with quadriplegia. Campers typically travel from multiple states to attend the five-day camp. IVUN recently spoke with CHAMP Camp Executive Director Jamie Mitchell to learn more..................................MORE
Several organizations will once again be offering summer camps for ventilator-assisted children. IVUN has gathered the latest details below. This information is subject to change, so be sure to check their website or Facebook pages for the latest updates..................................................................................................MORE
Educate, discuss, take action
Sharing the work of others
Recent Relevant Publications
Summaries, links to selected professional, disability, disease journals and newsletters
Conferences and webinars for health professionals and ventilator users
Vol. 37, No. 2, April 2023
Editor: Brian Tiburzi
Designer: Brian Tiburzi
Permission to reprint must be obtained from Post-Polio Health International (PHI) at email@example.com.
a breath of fresh air
In 1991, David Carter, a hospital administrator with a respiratory therapy background, and Nancy McCurdy, a child life specialist, developed the idea of providing a summer overnight camping experience for children with tracheostomies and those requiring technological and ventilator assistance. They were determined to make the outdoors accessible to children whose unique and complex medical needs made it difficult to participate in the summer camp experiences that many of their peers were able to enjoy. Their vision resulted in the establishment of CHAMP Camp in the summer of 1991 in Ashley, Ohio
The camp, now located at Bradford Woods in Martinsville, Indiana, hosts more than two dozen children each summer aged 6 to 18 years old who require ventilator assistance, including some with quadriplegia. Campers typically travel from multiple states to attend the five-day camp.
IVUN recently spoke with CHAMP Camp Executive Director Jamie Mitchell to learn more.
What does a typical day look like at CHAMP Camp?
All of our campers arrive on Sunday morning or Sunday afternoon. We vary the arrival time so that we can have a really huge spectacular greeting for each individual camper. Each of our cabins is split up by similar gender and age, and those cabins will get up together and get ready and come to breakfast. We get the whole camp together for every meal. We like to say that we start the day and end the day together.
After breakfast, they all head out to their first trail group opportunity, and that's going to be an activity like the zip line, our alpine climbing tower, arts and crafts, swimming, or the waterfront where you can do fishing and boating. Sometimes we do some camp science or cooking. We have a variety of different activities. Then they go back to their cabins for any needed treatments or medications. We gather together again for lunch, and then in the afternoon it’s off to a different activity. Once that activity is over, they come back to their cabin to rest or receive any needed medications and treatments. Then we all get together for dinner. Afterward, we have an evening activity. That could be something such as The Bongo Boys coming to do a drum lesson with us or a dance, which is one of the campers’ favorite activities. Sometimes we do talent shows.
We always have a closing ceremony on Wednesday night where we have an opportunity to call out each of the campers for the great things that they've done at camp that week. Most of the time that will also include a graduation ceremony. Although this year will be the first time that I can remember not having anyone who's graduating. So hopefully all of these kids will be returning for camp in 2024. Then they all depart on Thursday.
What type of support staff does the camp have on hand?
We operate at about a 2.5-to-1 counselor-to-camper ratio. Most of our counselors are nurses, respiratory therapists, doctors, physical, speech and occupational therapists, plus students from those different disciplines. And then we have some others who are just great at being camp counselors. We staff with a strong medical component so that our kids can come safely and not have to bring their own caregiver or a parent.
How have advances in ventilator technology and medical care impacted the camp experience over the course of your 16 years running CHAMP Camp?
I think it's been amazing to watch the progress of medical technology that's allowing our kids to be healthier and have longer life spans. A lot of the equipment we have now wasn't available when we first started. Ventilators have decreased in size and weight. And we’ve gotten more advanced medical technology. We've seen our kids not just living into adulthood but thriving into adulthood because they're able to do more things and get outside of their homes. A huge change for us has been not just having those kids with us from ages 6 to 18 but being able to watch them grow into their adult lives. We hope that we've had a little bit to do with that by inspiring their independence.
From a camp activity standpoint, it's been great. Back in the day, ventilators used to be huge, and we’d have to figure out how to get it in a canoe or, say, run 50 feet of ventilator tubing from the vent on the ground up to the top of the alpine tower. And now with these portable vents, we can just throw a backpack on a kid or chuck it in the seat beside them. And really all of our activities can be available to all of our campers because of that improvement in technology.
What are some of the benefits of attending camp for ventilator-assisted children?
I think one of the primary benefits is the opportunity to come and spend time with a group of people who are your true peers who have similar challenges to you and who understand what you're dealing with on a day-to-day basis.
And with that, learning those peer-to-peer relationship-building skills is a huge benefit of coming to a camp like ours because you're around kids that you're going to be more comfortable with because they have this similar medical needs. And I think anybody benefits from going to any kind of summer camp - for learning independence, how to let others help take care of you, how to build other relationships, how to do things on your own that you might easily rely on mom and dad for when you're at home. So, I think those are the primary benefits. It’s really the relationships that you form by going to a summer camp, especially one that's specific to your needs and how those relationships have turned into ongoing friendships for our kids.
CAMP OFFERINGS FOR VENTILATOR-ASSISTED CHILDREN
Several organizations will once again be offering summer camps for ventilator-assisted children. IVUN has gathered the latest details below. This information is subject to change, so be sure to check their website or Facebook pages for the latest updates.
Camp Inspiration is a family program in Lake Luzerne, New York, for children (ages 5-21 years old) who are BIPAP or ventilator dependent. This year's camp will take place June 14-18. Additional details are available on their website.
Camp Pelican is a week-long overnight resident camp for children with pulmonary disorders-such as but not limited to severe asthma, cystic fibrosis, tracheotomy and ventilator assisted children. The 2023 session is scheduled for May 28 - June 3. Applications are available online.
CHAMP Camp provides a summer camp experience in Martinsville, Indiana, for children and adolescents age 6-18 with tracheostomies and those who require technological respiratory assistance. Activities include zip lining, swimming, canoeing and climbing that encourage independence, confidence and self-esteem to create memories that last a lifetime. This year's camp will take place June 11-15. For more information visit champcamp.org or contact Jamie Mitchell, 317-679-1860, firstname.lastname@example.org.
FRESH AIR CAMP
Fresh Air Camp is a 6-day, overnight camp for children with tracheostomies or respiratory technology needs held every June on the grounds of Camp Cheerful in Strongsville, Ohio. This year's camp is scheduled for June 11-16. More details at www.freshaircamp.org.
PA VENT CAMP
PA Vent Camp is a week-long summer camp held in June each year and is open to children ages 5 to 18 who use any sort of mechanical ventilation (ventilators, BiPAP, or CPAP). Hosted on the fully-accessible grounds of Camp Victory in Millville, PA, campers have access to a zip-line, rock wall, pond, pontoon boat, tree house, wildlife center, board games, and arts and crafts. This year's camp is scheduled for June 25-29. Find out more on their website or contact 717-531-5338 or email@example.com.
Biden Signs Executive Order Aimed At Improving Care For People With Disabilities
With a sweeping new executive order, President Joe Biden is looking to ease pressure on the nation’s beleaguered home and community-based services system.
The White House described the order, which Biden signed Tuesday in a Rose Garden ceremony, as “the most comprehensive set of executive actions any president has ever taken to improve care for hard-working families while supporting care workers and family caregivers.”
It tasks nearly every cabinet-level agency in the federal government with various efforts to expand access to affordable, high-quality care and provide support for both paid and family caregivers. Disability Scoop has more.
ADA Case Set To Go Before Supreme Court
The U.S. Supreme Court will weigh in on the rights of people with disabilities to sue under the Americans with Disabilities Act.
The high court said this week that it would take up a case known as Acheson Hotels, LLC v. Laufer. At issue is whether individuals with disabilities have standing to sue a business under the ADA if they have no intention of actually visiting the establishment.
The case originated when Deborah Laufer, a Florida resident who has a vision impairment and uses a cane or wheelchair, sued Acheson Hotels alleging that the website of the Coast Village Inn and Cottages in Wells, Maine did not offer adequate information about accommodations for people with disabilities as required under the ADA. More from Disability Scoop.
From the Mütter Museum: Interview of Adolf Ratzka
At just 17 years old, Adolf Ratzka contracted polio and became paralyzed. As a result, he spent three long, lonely months in an iron lung. In the first video of the Mütter Museum's new series, "My Time Inside an Iron Lung," Adolf Ratzka recounts his experiences living in an iron lung, as well as his subsequent struggle with his physical and mental health, and his determination to live a life of helping others. The interview was conducted by Meredith Sellers and produced by Jonah Stern. Future entries in the series will feature Audrey King and Thomas Fetterman.
Opportunity to Participate in Research
The NIDILRR-funded Research and Training Center on Home and Community-Based Services (HCBS) Outcome Measurement is conducting interviews with people with disabilities about their experiences with HCBS and the important areas of their lives (e.g., social connectedness, meaningful activities). Participants must be at least 18 years old, have a disability, and receive services or supports for their disability. Participants will meet with interviewers over videoconference or in person three times over one year and will receive a $10 gift card for each completed interview. For information or to volunteer, contact Matt Roberts at firstname.lastname@example.org.
RECENT RELEVANT PUBLICATIONS
Understanding successful transition to independent living: A qualitative study of young adults with disabilities
Schulz JA, Koon LM, Greiman L, Steinlage HA, Hall JP
“Study examined the perceptions of young adults with mobility disabilities regarding independent Living (IL), how they define IL, and what advice they would give others considering living a more independent life. IL involves having choice and control over where and with whom one lives. People with disabilities are less likely to live independently than their peers without disabilities. Semi-structured interviews were conducted with six young adults with mobility disabilities who had successfully transitioned to living independently. A content analysis was used to identify emergent themes from the interviews. The results indicate that participants had individualized perceptions of the definition of IL. Participants identified many barriers and facilitators to IL, including the physical layout of housing, available amenities, and social support. They recommended preparing for IL in advance and taking advantage of outside resources to enable a successful transition. These findings can be used to guide recommendations for young people with disabilities to use to ensure a successful transition to IL.”
Children and Youth Services Review. 2023. Vol. 145. doi: 10.1016/j.childyouth.2022.106691.
The role of telemonitoring in patients on home mechanical ventilation
van den Biggelaar R, Hazenberg A, Duiverman ML.
“There is a growing number of patients being treated with long-term home mechanical ventilation (HMV). This poses a challenge for the healthcare system because in-hospital resources are decreasing. The application of digital health to assist HMV care might help. In this narrative review we discuss the evidence for using telemonitoring to assist in initiation and follow-up of patients on long-term HMV. We also give an overview of available technology and discuss which parameters can be measured and how often this should be done. To get a telemonitoring solution implemented in clinical practice is often complex; we discuss which factors contribute to that. We discuss patients' opinions regarding the use of telemonitoring in HMV. Finally, future perspectives for this rapidly growing and evolving field will be discussed.”
Eur Respir Rev. 2023 Apr 5;32(168):220207. doi: 10.1183/16000617.0207-2022.
Going home: Clinician perspectives on decision-making in paediatric home mechanical ventilation
Jeffreys J, Rahman M, Vears D, Massie J.
“Despite a recent increase in the use of ventilators in the home setting for children with chronic respiratory failure, there is currently no unified approach for clinical decision-making for children requiring long-term mechanical ventilation. The purpose of this study is to understand the clinician's perspective on decision-making around home ventilation for children, and how home-based care contributes to successful outcomes in this population.”
J Paediatr Child Health. 2023 Mar;59(3):499-504. doi: 10.1111/jpc.16333.
Incidence and Mortality of Children Receiving Home Mechanical Ventilation
Amin R, Verma R, Bai YQ, Cohen E, Guttmann A, Gershon AS, Katz SL, Lim A, Rose L.
“The incidence, as well as the predictors of mortality, for children receiving home mechanical ventilation (HMV) using population-based data in Canada is a current knowledge gap. Our objectives were to describe HMV incidence and mortality rates, and associations of demographic and clinical variables on mortality.”
Pediatrics. 2023 Apr 1;151(4):e2022059898. doi: 10.1542/peds.2022-059898.
ATS 2023 International Conference
The American Thoracic Society 2023 International Conference will be held May 19-24, 2023, in Washington, DC. ATS 2023 showcases the latest advances and discoveries in respiratory science, patient care and global respiratory health. Get more info and register at https://conference.thoracic.org.
ERS International Congress 2023
The European Respiratory Society (ERS) International Congress will take place in Milan, Italy, September 9-13, 2023. Find out more at www.ersnet.org/congress-and-events/congress/. Registration will open in Spring.
October 8-11, 2023, Honolulu, Hawaii. The CHEST 2023 Annual Meeting will take place in person and will offer more than 300 educational sessions, including simulation and interactive learning opportunities. Sign up at the link above to receive the latest updates via email.