The Clipboard: Medicaid threatens to terminate girl's nursing care

From an article¹:

"She's a happy child," her mother, Laura, tells NBC 15 News. Her size is more like that of a 3 year old. But that's the least of her medical concerns.

"She's got the trache, she's deaf, she's got asthma, got an enlarged heart, all types of bone problems, scoliosis," said her mother.

To help her breathe, Lauren is hooked up to an oxygen machine and a humidifing mist machine. Lauren's doctor said her airway is restricted to the size of the end of an ink pen.

"That's why she is constantly suctioned. She is always getting plugged up," added Laura. Lauren's airway is suctioned several times an hour to prevent her from suffocating.

Due to her medical condition, Lauren requires 24-hour a day supervision. Medicaid currently provides her a trained nurse for 10 hours a day. But a recent letter from Alabama Medicaid says a decision has been made to eliminate Lauren's care.

As to why, Medicaid officials would only tell Lauren's mother: "She doesn't meet the criteria. I don't know how they can do that." ...

...Dr. Lawrence Sindel, Lauren's doctor, responds to that by saying, "Clearly the people that made the decision don't understand what's going on with Lauren or they decided taking care of her is not worthwhile."

Dr. Sindel has cared for Lauren for ten years. He said if they waited for her condition to worsen further, the price could be her life. "I think if she were to get the flu, it would be very difficult to help her through that. If she were to catch a pneumonia, it would be very difficult to help her through that. So the likelihood she could die is very high." said Sindel (link)

Via Eschaton.

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Complete text of the article, Medicaid threatens to terminate girl's nursing care, by Bruce Mildwurf

Life as they know it is on the verge of turning upside-down for a local family. Alabama Medicaid is threatening to eliminate the nursing care for a Mobile middle school student who had previously qualified for a special program. The girl's doctor says the changes are happening because of a state policy that doesn't make any sense.

13-year-old Lauren Rainey is full of life. She's smart, outgoing, and always smiling. Her nurse describes her as a drama queen. At school she is the class clown.

"She's a happy child," her mother, Laura, tells NBC 15 News. Her size is more like that of a 3 year old. But that's the least of her medical concerns.

"She's got the trache, she's deaf, she's got asthma, got an enlarged heart, all types of bone problems, scoliosis," said her mother.

To help her breathe, Lauren is hooked up to an oxygen machine and a humidifing mist machine. Lauren's doctor said her airway is restricted to the size of the end of an ink pen.

"That's why she is constantly suctioned. She is always getting plugged up," added Laura. Lauren's airway is suctioned several times an hour to prevent her from suffocating.

Due to her medical condition, Lauren requires 24-hour a day supervision. Medicaid currently provides her a trained nurse for 10 hours a day. But a recent letter from Alabama Medicaid says a decision has been made to eliminate Lauren's care.

As to why, Medicaid officials would only tell Lauren's mother: "She doesn't meet the criteria. I don't know how they can do that."

To find out, NBC15's Bruce Mildwurf went to Montgomery to meet with Alabama Medicaid Medical Director Dr. Mary McIntyre. She is the doctor who made the final decision in Lauren's case. "I have to make it (decisions on Medicaid clients) based on the medical information that is provided, the documentation that is submitted, and whether or not they actually meet the criteria," said McIntyre.

The Medicaid official said the decision is based solely on the individual's medical records and the nurses progress notes. She said Medicaid only provides nursing care for patients whose condition is clearly worsening.

Dr. Lawrence Sindel, Lauren's doctor, responds to that by saying, "Clearly the people that made the decision don't understand what's going on with Lauren or they decided taking care of her is not worthwhile."

Dr. Sindel has cared for Lauren for ten years. He said if they waited for her condition to worsen further, the price could be her life. "I think if she were to get the flu, it would be very difficult to help her through that. If she were to catch a pneumonia, it would be very difficult to help her through that. So the likelihood she could die is very high." said Sindel.

"Words like could and may, those are all things that could happen to anyone in this room." said McIntyre during our interview. The difference being everyone who was in the room when she made that comment was healthy.

"For me to take care of her 24 hours a day, I don't know how long I can last doing that." said Laura. " How am I going to take care of her if I can't even go out to work to take care of her. I may even lose my house."

Dr. Sindel agrees: "That's not something a family member can do 24 hours a day. None of us can work 24 hours a day." But Medicaid's Dr. McIntyre insists the program was not designed to provide relief to the caregiver.

Minutes before our interview with Dr. McIntyre, Mildwurf was told we would only speak in general terms... that we were not to mention Lauren by name... "Because of regulations, that is not something as an individual or as an agency... that's not something we can discuss." We were told that even though Lauren's mother filled out the necessary paperwork giving Medicaid permission to speak specifically about her case.

When Lauren's name was mentioned by us, just to ask what information we had access to, the interview abruptly ended. "Turn the camera off. We're done with the interview at this point," we were told.

Before walking away, Dr. McIntyre did admit she makes her final decision to deny care without ever seeing the patients. "There is no ability to go out for every single one and see every single patient."

But with only 28 patients statewide receiving similar care, Lauren's mother believes the recipients should be seen by someone with the state agency before their nursing care is cut-off. "They need to come in and see these people and see that they need care."

Dr. Sindel tells us: "Most physicians would not agree with just letting somebody who is still functioning and has a real life and a personality just not be cared for." But then again, Dr. Sindel sees Lauren as a human being, not as just a medical chart.

"It's just sad. It's sad that our government can, you know... it's like throwing kids away." said Carolyn Yates, Lauren's 10-hour-a-day nurse. And it's because of the rules in the State of Alabama, this young girl will possibly be denied the care her doctors say is necessary for her to just live and breathe. Lauren's family has appealed Medicaid's decision. Meanwhile, Medicaid will continue to maintain Lauren's care through the appeals process.

reference=http://wpmi.com/news/local/story.aspx?content_id=89D0FCBA-0DB5-4A98-BE23-DD342069DC16