By Fiona Soltes
The interactive Saturday session Money Matters – Career Options began as many fruitful conversations do: with a bit of self-reflection.
Ryan Rushton, PT, DPT, MHA, CLT, program administrator, Utah Center for Bleeding and Clotting Disorders, and Brenda McLean, MS, a school and career counselor at the Indiana Hemophilia and Thrombosis Center in Indianapolis, encouraged those present to break into small groups. Audience members then considered their individual work, why they chose it, whether it’s something they love, whether they’re physically able to perform it, and other factors.
“Just analyze where you are,” McLean said. The next step: analyzing where others are, as well, through a couple of case studies. She and Rushton presented two very different scenarios. First was a 50-year-old male with moderate hemophilia A, a longtime machine operator who works around sharp, dangerous equipment. He has not disclosed to his employer for fear of being fired, does not know how to self-infuse, and doesn’t regularly keep factor at home due to missing comprehensive clinic visits for various reasons. But he had a work-related injury, splitting his head open. At the local hospital, he said he had hemophilia but they had no clotting factor. He contacted the HTC, and the affiliated hospital was finally able to treat him.
The presenters then asked the crowd: What are the concerns from a work perspective? From a healthcare perspective? Could the accident have been avoided? How could things have gone more smoothly? Should he do anything different going forward?
Audience members talked about the importance of keeping factor nearby and knowing how to self-infuse. As for one electrician present, he said he understood the challenges of disclosure; he hadn’t been fired because of his hemophilia, but word of how much time he might need to take off had spread in his small town, making it harder for him to find work.
A second scenario involved a 28-year-old male with severe hemophilia B. He uses extended half-life factor prophylactically three times a week, and has communicated extensively with his managers to increase understanding. The result: He’s been given puncture-free gloves to protect his hands, and non-slip boots and safety clothing to protect other parts of his body; he has space in the fridge for extra factor in case of an emergency; colleagues are trained to help infuse; and more.
One audience member quipped about how he’d like to work there. Another audience member, however, noted that if the company goes to this extent and things don’t work out with the employee, it might be harder for future workers to receive accommodations.
The truth is, there is no perfect scenario, but personal responsibility and clear communication can help. By law, workers are not required to disclose disability or disease. But workers must believe they’re capable of performing the tasks required to do the job. It’s essential for people to honest with themselves about whether they can actually meet the physical demands. If not, it might be time for something else. For those who do decide to disclose, one audience member suggested waiting until after being hired, when a commitment has been made.
The session also included resources for those on the hunt, as well as an urging to fully understand insurance coverage when starting any new role. That coverage might include a colonoscopy, Rushton said. But does it cover factor? ■