“Dad, do you think I could ever do that?” I was determined to do all I could to make it happen,” shares a CMD parent.
It started with a simple idea — offer the opportunity for CMD affected individuals to visit a new country, for life experiences like no other.
With help from the Noelia Foundation in Spain and Cure CMD, the first conquest to connect families began at the 2022 CMD Scientific and Family Conference, with an initial conversation that led to a search for CMD families interested in an abroad exchange.
The process fell into place once the connection between two families was made, both with an unwavering commitment to making an exchange happen.
“We believe it has been very enriching for everyone as we have also learned from them many things,” says Diana Gomariz, mother of a CMD-affected individual from Spain. “We encourage other families to carry out this type of exchange as it has been very positive for both parties.”
Families who participated in this exchange found that the majority of logistics required were based on the level of care needs. The physical capabilities of one individual may vary greatly from another. Factoring in specific needs regarding caregivers, types of travel, and housing accommodations all helped to clarify the details of what is possible.
Obtaining the right power converters for medical equipment was the primary hurdle to a successful trip. Being able to properly charge your device and power vital breathing support equipment is pivotal in everyday care. Participants cited that although consulting online forums and direct manufacturers' recommendations ahead of time, much had to be handled last minute, on-site. It was suggested that renting locally and/or borrowing equipment may be the safest path.
Mobility device damage during air travel is a constant worry for affected individuals and their families. Sometimes airlines will offer to seal the mobility device in a pod, without disassembling or damaging the device. This helped relieve a lot of worry for participants until accessible air travel legislation offers individuals with physical disabilities the ability to remain in their wheelchairs on planes.
Exchange participants indicated that bringing their own seat cushions helped ease discomfort during long flights. This meant taking their wheelchair seat cushion aboard and making adjustments to the plane seat itself after consulting airline staff.
Currently, no funding is available to support exchanges like this, but participants hope to promote awareness for this opportunity, and possibly create a fund to help others experience a similar exchange. Current funding opportunities to assist with exchange expenses are limited, but may include scholarships, foundation grants, funding from your state’s Department of Rehabilitation, and part-time work in your chosen country.
The Noelia Foundation and Cure CMD are eager to promote exchange opportunities for those interested. “Families should know about this valuable experience,” says Amaia Uribe-etxebarria of the Noelia Foundation, “please count on us to help make it happen with more families.” “Giving other kids hope to do this kind of experience would be perfect,” shares one of the exchange participants.
Everyone involved in making this one-of-a-kind exchange a reality are happy to share more about their experience with others considering a similar adventure. Contact us to learn more about this exciting opportunity!
In May 2024, the U.S. Federal Aviation Administration (FAA) Reauthorization Act was passed, and includes significant reforms to improve the air travel experience for passengers with disabilities. These changes are meant to provide a safer and more dignified air travel experience, making air travel more inclusive and accessible for everyone. The legislation secures training requirements to improve safety and wheelchair handling, increases accountability for damaged mobility devices, and provides a pathway to wheelchair seating on airplanes. Although progress has been made, there is still a long way to go. If you are interested in joining the fight for accessible air travel, reach out to Cure CMD’s Advocacy Team.
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