Going Too Far

Tomorrow I will be making my annual speech to the physical therapy students at UNC Chapel Hill. We always do this to give the students some extra experience around people with disabilities in a more comfortable setting. You can only get so personal in a hospital. However, the main purpose is to talk to the students about the NCEWHA, hoping that they become recruiters for us when they begin their careers.

This tactic is our little loophole to get around a law that I believe people have taken too far. HIPAA was a law designed to maintain confidentiality between the patient and the healthcare world. For example, if a person has a disease and applies for a job, he/she does not have to disclose the disease nor can he/she be discriminated because of it. Of course, someone like me has a more difficult time hiding his disability, so the law isn’t really that important. I guess it is nice not having to broadcast I have Spinal Muscular Atrophy (shhhh don’t tell anyone!), but anyone who sees me knows I use a wheelchair. In that respect, HIPAA can’t help me much, but it does help others and the law does have its merits.

However, health care agencies have become way too strict on this law. For example, if a doctor or someone in the MDA meets a new person interested in playing hockey, they cannot give me their name. In fact, I have to give the healthcare groups permission to give my name to people. Then we have to wait on someone to contact us even though they are probably nervous and shy about new opportunities. More often than not, these potential players never contact us. They are then stuck at home watching their life go by. All of this is because of HIPAA. If I were able to personally visit the person, they may have been convinced to play. If they still aren’t convinced, then I take full responsibility. Until then I place the blame on HIPAA because it prevents us from having the opportunity to improve the lives of others.

To make matters worse, I have recently found that healthcare workers are not supposed to add patients on social networking sites, such as Facebook. This means that students in classes are not supposed to add us as friends for us to mold into the recruiters we need. Even though we aren’t patients, it’s still a risk for the University and the hospital. Goodbye loophole to HIPAA!

While it’s disappointing to lose that loophole, that is not the biggest concern to me. My concern is that these restrictions cost friendships. I have met people through these speeches that have become very important parts of my life. There are also many doctors who I consider family. I believe social interaction is very important to every life, especially those of us fighting diseases. We need that support of our family and friends.

With the current tightness of HIPAA, what happens to that kid with a severe disability who only interacts with people in the healthcare field? There are children out there who cannot attend a public school because of infection risks. They go to doctor appointments and maybe a special camp once a year. Then they sit at home with their computers as their only connection to others. People in the healthcare field are all they know. Having a friend to talk to could change their lives.

I think that when we look at things like HIPAA, we shouldn’t just look at preventing lawsuits. When we do, we forget about how it can affect those who have no outlets. Outlawing social interaction on Facebook is taking HIPAA way too far!

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