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About a month ago, I noticed that Mary had an soft enlarged area around the base of her throat.

“You ought to get that looked at,” I said. “That area around your neck doesn’t look right.”

So Mary made an appointment with our family physicians practice. She has a different doctor than Ralph and I, a soft spoken muslim woman. We like her for Mary because she is quiet and calm, and yet firm and confident. Mary made an appointment and because she hadn’t been seen for five years, she had to fill out new paperwork. Sometimes Mary wants to be independent, which is normal for anyone, even adults with high functioning autism. So she filled out her paperwork and did not give Ralph or I permission to talk about her health conditions.

A few days after Mary’s appointment, our doctor’s office called me at my work office asking to have Mary call them and talk to a nurse. They also called Ralph on his cellphone. They were very anxious to get ahold of Mary regarding her condition. But they refused to discuss her health condition with either Ralph or me because Mary had not signed a HIPAA form allowing them to talk about her health condition. Mary has a relatively new phone and did not realize that her voice mail was not set up.

We had to have Mary call the doctor’s office. However, this was frustrating for Mary because she works in a call center during the doctor’s office hours, and does not have enough time to wait on hold to talk to a nurse. Finally on the third day, she was able to get through to talk to the nurse.

She had to get an ultrasound of her thyroid nodule. After that the office made a referral to an endocrine specialist for a fine needle biopsy. Mary’s thyroid nodule is benign by the way.

This episode surprised us and demonstrated the importance of talking about medical issues and paperwork. We told Mary that we had filled out HIPAAs with permission for our children to know about our health conditions, and she ought to do the same with Ralph and I, especially since we need to rearrange our schedules to get her to her medical appointments. She agreed somewhat reluctantly, I think because this is an area for independence for her. Still, it is an important issue to discuss and not be surprised about.

When Ralph took her to the endocrine specialist, he made sure that she signed the HIPAA paperwork to allow her doctors to talk to us. The nurse from that office called me, again because Mary’s voice mail still did not work. They had had a cancellation just before the holiday weekend and they were anxious to fill the spot and also save Mary the anxiety of waiting over the weekend. I said to her that we needed to know some information because Mary had some physical limitations and we had to provide her transportation. She was much more helpful. And the doctor had Ralph come in to be with Mary during the procedure.

I know that some day Mary will have to make all of these arrangements alone, but for now it is simply easier for her to get help from us.

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