Pushed to the Edge

As I write this, I am exhausted!

Week before last, just when I thought everything was in place for my daughter’s healthcare going forward, I learned that it was not. That checklist I put together to help others was incomplete. I had more to learn about how the system works.

Step 1: What’s Going on Here?

Frustrated, I called the woman, I’ll call her Peg, who had contacted my daughter, beginning yet another need to jump into my advocacy role. She admitted the system is so complicated that even the people who work for it don’t understand it.

And yet, I had to come to some understanding so that my daughter would be well served. Peg changed the date of coming to see my daughter to a time when I was available to be there.

Tired of not getting the full picture via phone calls, I went to the Job Center hoping to see Nicole’s case worker. I learned case workers now work from home. “Fill out that pink slip and drop it in the blue drop box. The slips are picked up hourly. You should hear from the case worker in 24-48 hours.” I dropped the slip in at 8:30 am.

The next day I got a call from a young woman who was the middle “wo/man” between the case worker and me. I was so frustrated and gave her such a hard time, that I really don’t even remember why she was calling. She said I would hear from the case worker in 24-48 hours. I asked, “Is that from yesterday or today.” It was from today. So the 24-48 hours I was given yesterday was really 48-96 hours. I have yet to hear from the case worker.

Step 2: Taking the Bull by the Horns

Fortunately, I didn’t wait the 24-48 hours. Instead, I called the Medicare Dual Advantage company that Nicole was signed up for, explained the situation, and asked if they could help me understand what was going on. The insurance company rep called the Medicaid office … she said it was the local office … the office I was supposed to deal with. It was an 800 number, so I don’t know if it was local or not. All I know is that when I went to the local office in person, I got nowhere.

So when I was connected to the Medicaid person, she already understood what I needed. She was very kind, checked her on-line resources and said the local office has all the information needed. It is the state office that needs updating. She said she did that but it would take three business days for it to take effect. She wouldn’t be able to contact me to let me know this had happened (I have little trust in the system at this point and would have liked them to contact me and assure me this was done). She tried to reassure me that it was a simple process and there was no need for me to check.

Step 3: Repeat Performance

From all this, I learned that the Medicare Dual Advantage plan will be Nicole’s primary insurance, and the My Care Ohio Medicaid plan will be her secondary insurance. And her doctors need to take both plans.

That meant contacting all Nicole’s doctors again to see if they take the My Care plan she had been assigned to. There are only two choices and neither choice has a good reputation.

And so, I started making calls to doctor’s offices again. All of them take the plan except her gynecologist … the doctor I went through a lengthy process two years ago to find … the doctor Nicole and I both love.

Dr. McClusky is the one who called us on a Friday evening after office hours because we were panicking about the results of Nicole’s mammogram which looked to us like she had breast cancer. And she did. And Dr. McClusky soothed us that it looked like it was caught early. She referred us to Dr. Weighall, a breast cancer surgeon we also came to love. Dr. Weighall called our home several times just to check on us and see how we were doing. I mean, what doctor does that these days?

Also, at age 80, I’ve had a lot of gynecological examinations. With Dr. McClusky, it was the first time I didn’t experience pain … nor did I experience any discomfort. It was the same for my daughter. Can you see why we love her?

Step 4: Going the Extra Mile

The receptionist at Dr. McClusky’s office indicated that the doctors in their office are not certified with this Medicaid plan. She couldn’t answer what it takes to get certified.

And so I went the extra mile for Nicole. I asked to speak with the office manager. I hoped I could implore her to find a way for Dr. McClusky to take this plan. I really don’t understand the specific reasons why this isn’t possible, but the tone told me they had not been treated well.

Bonnie, the name I’ll use to refer to the office manager, and I commiserated with each other about the changes to healthcare when managed care changed it from a person-centered approach to profit-centered. We were of like minds about the disintegration of “care” in so-called “healthcare.”

Then Bonnie went the extra mile for me. She said, “I know another good gynecologist. He’s a man but has a woman nurse practitioner. If that would work for you, I would be willing to call his office and ask if they take the insurance and get back with you. I would not refer you to a doctor without a heart.”

She called back within minutes with news that this doctor does accept the plan. There are people in healthcare who really do CARE! I am so grateful to Bonnie for being one of those.

I immediately called the new doctor and got an appointment scheduled for Nicole on the very same day she was scheduled to meet with Dr. McClusky … with the nurse practitioner.

Nicole doesn’t like the idea of a male gynecologist but is accepting that I’ve done the best that I can to advocate for her. She has gynecological issues and is at higher risk for breast and ovarian cancer because of her myotonic muscular dystrophy. If surgery is ever needed, her new doctor will need to understand the anesthetic guidelines. People with myotonic risk dying if general anesthetic is used. In 2016, a saddle block was used when she went through a hysterectomy … a five-hour surgery with complications.

Extras:

On Tuesday of that week, my friend, Marvel, came to stay with me for a few days. Her furniture was on its way to her new home in Arizona. And so in the midst of all this frustration, I welcomed her into my home. As much as I loved having her here, it added to my exhaustion. She joined me for the next step.

Step 5: Meeting with Peg

At our last-week Thursday meeting, Peg was surprised that I had already checked with all Nicole’s doctors and found a new gynecologist. In our first conversation, she indicated not knowing about Medicare Dual Advantage Plans. She must have done some homework between that call and our meeting, because now she understood that the My Care plan was Nicole’s secondary payor.

Peg was there to gather information about Nicole’s case management needs. And she explained these services as well as their over-the-counter services. Their OTC services are CONSIDERABLY less than that offered by the Medicare Dual-Advantage plan which we would never have known about had I not done all this footwork.

In addition, she revealed that this My Care Ohio plan pays for Nicole’s Assisted Living Medicaid Waiver. And so, for the first time, if I’m understanding it correctly, I saw that we are dealing with 3 levels here. And this whole process commenced because Nicole moved into assisted living.

Step 6: Wait and See

I’m holding my breath as we wait to see if everything is now in order. I will have to live with this for awhile to see if there is something else amiss in the process.

And, as I said, I’m exhausted. And I have a list of seven things I need to handle for myself. I hope I have the energy to begin tackling them tomorrow. And I have a thank you note to write. Today, I’m resting … and writing.

It feels so good to be writing again. And this is not the “heart ponderings” topics I love to write about. Soon, back to that, I hope. Ponderings are emerging!