Page 11 - Mobility Management, May/June 2022

VOCSN — ventilator, oxygen, cough assist, suction, nebulizer. They made a five-in-one.
“As someone who remembers being in an airport and carrying all these things, on top of making sure we weren’t breaking or leaving anything behind... it’s a lot of responsibility. And because this equipment is inte- gral to the person with the disease’s life and ability to live independently, they can’t be overlooked. It needs to be easier. For everybody.”
In addition to fully including people with disabilities in product devel- opment, Casey said caregivers also need to participate. “If you’re going through the product design process, it shouldn’t be a group of people
that are making something to make something,” he said. “It should include those that it’s intended to serve, both the person with the disease and the caretaker. Because they’re equally as
important to understand the environ- mental barriers or the real needs of all parties involved.
“That environment includes
family and children. It includes your surroundings. Maybe your bedroom is in this part of the house and there’s stairs inside. There’s an array of envi- ronmental factors.”
Casey said Team Gleason learned that the hard way. “If you’re devel- oping a product without the person that it’s intended to help in the family, without the caretaker involved, it’s not going to help anyone. It’s not.
“We started Team Gleason in 2011, and in the first two years, I remember working with families and sending out communication devices. We weren’t doing it properly. It took us a very short amount of time to recognize that we have to understand from a clinical perspective, from a patient perspec- tive, a caretaker perspective, a support
and environmental perspective. All these things have to be taken into consideration upfront, in the design, into the evaluation and ultimately into the support in the home. If it’s not done that way, it’s going to harm the commu- nity more than it’s going to help.”
Team Gleason’s technology training now includes families and caregivers. “The way you educate a family about equipment is different from a clini- cian,” Casey said. “Team Gleason does a fantastic job of understanding the needs of the community, because we’re getting over 430 requests a month. And our team is working hand in hand with people with the disease and their family, caretakers, clinicians. All of this allows us to better help improve and provide the best while we improve the future.
“ALS takes a village. Our team is that village, as it relates to what we provide and what we advance.” m
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MOBILITY MANAGEMENT | MAY-JUNE 2022 11 6/2/22 12:06 PM