My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Sunday, May 23, 2010

Being held Hostage by DME Coverage

Twenty Years Joyce

Sarah's trach was placed on May 2, 1990. The procedure itself was smooth. She had her usual difficulty coming out of the anesthesia and it took a few extra days to get her O2 sats were they should be. John and I learned trach care. How to clean it, change it, things to watch out for. We quickly became experts with the equipment we would be bringing home. One to monitor her oxygen level. One to make sure she was breathing as she slept. A mist machine to keep her airway moist. We had a crash course in well...crashing. Performing CPR on a person with a trach is a little different because they do not breath through their nose and mouth like we do. I prayed I never had to do that again. I felt like the first time took ten years off my life.

You may recall from a previous post that I had hoped to be home by Mother's Day. For some reason that was important to me. We did not make it. We celebrated the day by eating dinner in the cafeteria at the Cleveland Clinic.

A few days later we were ready. Sarah was stable. We had passed our night of observation that demonstrated we could handle things at home. There would be no help. Our insurance did not cover nursing care. We knew that. And truthfully, without having any knowledge of what our life was about to become we had no way of knowing that should be a concern. I started to pack things up and take them home with me each trip I made. It is amazing what a family can accumulate in one hospital room over one month. I had that feeling of, this is it, when we leave here we live happily ever after.

Then the social worker walks in. She sits down. "We have run into a snag," she informs me. "Your insurance does not cover durable medical equipment." "What's that?" I ask. She explains it is the part of an insurance plan that covers the equipment that is needed at home. In our case it would be the suction machine, the tanks of oxygen, the heart monitor, the additional trachs, the mist machine and the bottles of saline to go with it. "I have spoken with the company we often use and they are going to give you a price reduction on the items they can. It will be $493 per month (remember this was 1990-today it would be well over $1,000). They need the first month's payment before they will deliver. If you can give them a credit card they will have it to your house this afternoon. Can someone be there to receive it?"

I could feel the blood rising to my head. "We do not have $493 for this month or next month or the next month," I expressed loudly. "I am the sole bread winner for this family and I am just trying to keep a roof over our head and now how the hell am I suppose to come up with 493 dollars a month." Sarah started to cry in her crib. I went over to pick her up, instead I just stood there and looked at her. All of a sudden I was scared. Scared. To. Death.

The social worker said she would look into a few things for us. She needed a pay stub. Oddly enough the day before was payday, so it was still in my purse. She said she would need one from my husband too. I snapped at her. "Didn't you just hear me, I said he isn't working." With that, she left the room. I didn't know what I was suppose to do. Were we going home or not? I scooped Sarah up and sat down in the rocking chair. I was so confused. I just did not understand why this was happening to us.

An hour or so later, the social worker came back in. She told me that I made too much money for Sarah to qualify for Medicaid. She was checking to see if we could get assistance from BCMH, the Bureau for Children with Medical Handicaps but it takes a few days to get approval. "A few days!!! And what are we suppose to do in the meantime?" I asked. "You will have to stay here," she said. How crazy is that. Insurance will pay for us to stay in the hospital but not pay the lousy $493 for the equipment to go home. I felt like we were being held hostage by this equipment coverage.

BCMH denied coverage. I was ready to just quit my job too. But then how would we make the house payment. The four bedroom house we had just built before Sarah was born, on two incomes. Now we had one income and already one credit card maxed out with medical copays and prescription charges and parking fees and everything else that goes along with staying in a hospital for four months. Whatever were we going to do?

John and I resumed the pattern we developed. I stayed at the hospital during the night and he stayed with TJ at home until morning. Then he would take TJ to daycare, drive to the hospital to switch off so we didn't have to pay for parking. I would go home, quickly take a shower and drive to my job at the United Way in Cleveland.

That afternoon as I was walking down the hall at work, Ken, the Human Resource Director stopped me and asked how things were going. I shared the dilemma we were facing. He seemed surprised to hear what I was describing. He was rather new to this position having come from the corporate world where benefits were often more generous than the not-for-profit environment. I went about my business of the day. I had learned to become very focused on getting my job done, as I had to pick TJ up from daycare in time to feed him dinner then get back to the hospital so John could get him in bed at a decent time.

A while later Ken stopped by my office. He shared his department had placed a call to Kaiser Permanente, our insurance carrier, and they were willing to add the durable medical coverage and make it retroactive to the beginning of the month, so the rest of this month would be covered for us. I was shocked. I jumped up and planted a big kiss on this man's face. Definitely a no-no in the work place and so out of character for me, but this news was beyond exciting. It was thrilling and now we could get our baby girl home where she belonged.

I thanked him over and over. And then I called the social worker at the hospital. She was even more stunned than I. She said in all her years she had never had a company add coverage for just one family. And that's when it hit me. The larger significance. Yes this was for Sarah, but it was also for all the other families that have this same coverage. When the next person needs durable medical equipment, they will not encounter this situation. And that gave me a feeling of satisfaction.

I called John and told him we were coming home. He could not believe it. "How," he questioned. "I'll explain later," I told him. He waited at the house for the delivery of equipment, which arrived about the same time I pulled in the driveway with Sarah.

It was a glorious feeling to be home. Home for good. Or so I thought.


To Love Endlessly said...

What an encouraging post! I can't even imagine how you were feeling knowing you were to go home and then told otherwise. I'm so glad Ken asked how things were and even followed up to make things right.

Becca said...

Wow, that gave me chills. What an amazing way to make change happen! And with an insurance company, at that! :-) Btw, Sarah looks SOOOO much like you!

Christy said...

What an amazing boss/coworker you had then. I can't imagine what it would be like to be in that situation.

Oh and JOYCE... what is with your glasses! Amazing how fashion changes eh?

Adelaide Dupont said...

Medical care is expensive.

Glad Kaiser Permanente was doing something.

Lacey said...

I have friends that quite their jobs so that they would get coverage they needed. I will not do that. I do have great insurance, but having zero nursing care is becoming taxing. I really was hoping this new health care bill would help but it doesn't even address what we needed it to. Like insurance companies denying whatever they want and charging whatever they want!

Anonymous said...

That is a beautiful account of how drastically life can change with a little employer kindness.

I do not understand your healthcare in the US - I am from the UK, we pay for our healthcare through tax and no matter what the requirements of the patient, it is provided. Staff, equipment, the works. We pay for our medication prescriptions ourselves if we can afford it, but if you have a long term need it comes to £40 for a whole year (about $58). There are very few (any highly criticised) examples of our NHS not providing treatment. I would be in utter terror to be in your position.