by a mother on this journey
In January of this year, the monster too many of us have come to know by the name of ED, the monster who had secretly invaded my daughter’s life, was uncovered as my daughter was officially diagnosed with anorexia – this angered the ED monster and caused him to pull my daughter deeper into his clutches. This diagnosis came nine months after I first took her to her pediatrician with concern about her weight loss and her progressively narrowing diet. We watched her decompensate for nine months and did nothing other than weigh her and tell her to eat as she “disappeared” before our eyes.
I used to think that you could skate near an eating disorder and I used to think that the way she played with her food was just one of her odd habits. Unfortunately, her pediatrician knew no better. After diagnosis in January, my daughter met weekly with a therapist and a dietician and still saw her pediatrician weekly, while I desperately tried to get her to eat. For a time I even met her in the parking lot of her school every day to supervise her as she ate lunch. Neither the therapist nor the dietician were in network with our insurance policy. By the end of March, we realized that the treatment she was receiving was not enough to defeat the ED monster so in April she started in an Intensive Outpatient Program (IOP) three days a week after school until 8:15pm. As part of that program, and in addition to her group meetings, we met with a family therapist once a week and she met with the dietician once a week, a case manger/therapist at the eating disorder facility and she also continued to meet once a week with her outpatient therapist.
Unfortunately, the eating disorder held her captive. She continued to lose weight and the many months of partial starvation took a devastating toll on her body. She was slowly dying before our eyes. The day I knew that she needed a higher level of care was the day I saw her running down our street after returning home from treatment to “purge” what little calories she had consumed that day.
Somehow my daughter managed to graduate from high school a few days after her 18th birthday. Two weeks later she was admitted to a specialized eating disorder treatment center across the country for inpatient care. Her heart rate was only in the 40s and she had orthostatic hypertension and postural tachycardia – but she still thought she was fine. That is the most awful and deadly part of the ED monster; he convinces his dying victims that there is nothing wrong with them so they will not try to silence him and ban him from their lives.
As hard as it was to leave my daughter in this hospital and fly back home, the first thing I felt was relief because I knew that she was being monitored. I didn’t have to fear that her heart would stop working when she was on one of her secret runs or just lying in her bed sleeping. I knew she would have to eat. The inpatient treatment program my daughter was admitted to has some of the top eating disorder specialists in the country. I was amazed by how they were able to get her to eat and gain weight. They formed a united front and sealed the gaps where the ED monster tried to penetrate. While my daughter was in inpatient/residential treatment she was also receiving therapy and learning skills necessary for her to fight for her recovery once her brain function was restored. But the main goal of inpatient treatment is full weight restoration, because it is only after full weight restoration that the brain is nourished enough to begin healing and be cognizant enough to begin the hard work of mental recovery.
The American Psychiatric Association, the organization that creates the Diagnostic and Statistical Manual of Mental Disorders (DSM), which sets the criteria for classification of mental disorders, sets forth guidelines for psychiatrists to follow to determine the proper level of care for treatment of eating disorders. I would have thought that the insurance companies would follow the APA guidelines when doing utilization reviews (which ridiculously take place every 4 to 7 days), but they brazenly do not.
Can you imagine being a cancer patient and being told every few days that the insurance company is going to decide whether you need to receive treatment and they are not going to follow recommended treatment guidelines or consider your doctor’s recommendations? Or what if guidelines and your doctor dictated that you needed ten chemotherapy treatments to eradicate the cancer, but the insurance company decided that eight was good enough? Basically, that is what happened to my daughter. After four weeks of inpatient/residential care, my daughter’s psychiatrist believed that she continued to meet the APA guidelines for 24/7 care and that she needed such care. However, our insurance company (Humana), based on their own “internal guidelines” and without consideration of the APA guidelines or the recommendation of my daughter’s psychiatrist, decided that she could step down to Partial Hospitalization Program (PHP) and refused to continue to authorize coverage for her inpatient/residential treatment.
At this point my daughter was not fully weight restored, so we decided to do something known as plussing where we kept her in the inpatient/residential program until she was fully weight restored (which was about another week) and paid the difference between the cost of PHP and the cost of residential care. Full weight restoration is essential in order to have any chance of a sustained recovery! My daughter’s treatment team wanted her to stay in residential care for an additional week after weight restoration so that they could transition her to a weight maintenance meal plan. However, we were concerned that if we paid for another week of residential care with the insurance company paying for PHP, then when our daughter actually transitioned to PHP the insurance company would not pay for all the PHP she needed. Unfortunately, that meant that during her first week of PHP she was not allowed any meal passes and any snacks she ate with me were packed for her so she did not get the full benefit and experience of PHP. Exactly two weeks from my daughter’s transition to PHP the insurance company called late in the day and informed my daughter’s treatment team that that day was her last covered day in PHP. Their decision was based solely on a time frame. They did not take into consideration that she still met the criteria for PHP. In fact, according to her psychiatrist she even met the criteria for residential care. They also did not allow any time for us to transition back across the country and reconnect with her outpatient team. They were just denying coverage!
In an effort to provide my daughter with the best opportunity for recovery, we decided that we were going to follow the recommendation of her treatment team and pay out of pocket to continue her treatment in PHP. Those additional twelve days were critical in getting her to a place where she is now owning her recovery and able to live independently with the help of an outpatient treatment team. The treatment team my daughter had as an inpatient was the same team she had in PHP. They understood that the work they were doing was not going to “cure” my daughter, so they trained us, her parents, to carry on the work of recovery after she was discharged. And because she was 18 years old they individualized her PHP program and taught her how to maintain her meal plan and fight for her recovery.
My daughter will tell you that her time in treatment was hell and she never wants to go back. Had we allowed the insurance company to dictate her treatment, she might already be on her way back to that hell.
An insurer is a fiduciary which means that they must act in good faith and with undivided loyalty to those they insure. Our insurance company did not do that. Rather, their loyalty was to their stockholders and to their bottom line. They made their utilization decisions based upon my daughter’s weight and the number of days she had received treatment rather than on her physical and mental status and the standards set forth by the APA. They made up their own rules to suit their bottom line and in so doing they jeopardized my daughter’s life. We are fortunate that we had a home equity line of credit that we could tap into to pay for the care that the insurance company refused to pay. Many do not have the funds to be able to cover the cost of necessary treatment not paid for by their insurance company. Insurance companies seem to capitalize on this and on the fact that most of us do not have the emotional energy to fight them when we have been fighting for our child’s life.
Now we continue with our appeals to our insurance company. In the interim, we carry the financial and emotional burden of this debt! Our attorney’s fees are likely to be higher than the amount we paid for our child’s treatment, but we will exhaust all of our appeal rights and we will sue our insurance company to require them to do their fiduciary duty in the hopes that no more of our children will have to suffer longer than they need to or die because they were denied proper treatment.
I used to think that you could skate near an eating disorder and I used to think that the way she played with her food was just one of her odd habits. Unfortunately, her pediatrician knew no better. After diagnosis in January, my daughter met weekly with a therapist and a dietician and still saw her pediatrician weekly, while I desperately tried to get her to eat. For a time I even met her in the parking lot of her school every day to supervise her as she ate lunch. Neither the therapist nor the dietician were in network with our insurance policy. By the end of March, we realized that the treatment she was receiving was not enough to defeat the ED monster so in April she started in an Intensive Outpatient Program (IOP) three days a week after school until 8:15pm. As part of that program, and in addition to her group meetings, we met with a family therapist once a week and she met with the dietician once a week, a case manger/therapist at the eating disorder facility and she also continued to meet once a week with her outpatient therapist.
Unfortunately, the eating disorder held her captive. She continued to lose weight and the many months of partial starvation took a devastating toll on her body. She was slowly dying before our eyes. The day I knew that she needed a higher level of care was the day I saw her running down our street after returning home from treatment to “purge” what little calories she had consumed that day.
Somehow my daughter managed to graduate from high school a few days after her 18th birthday. Two weeks later she was admitted to a specialized eating disorder treatment center across the country for inpatient care. Her heart rate was only in the 40s and she had orthostatic hypertension and postural tachycardia – but she still thought she was fine. That is the most awful and deadly part of the ED monster; he convinces his dying victims that there is nothing wrong with them so they will not try to silence him and ban him from their lives.
As hard as it was to leave my daughter in this hospital and fly back home, the first thing I felt was relief because I knew that she was being monitored. I didn’t have to fear that her heart would stop working when she was on one of her secret runs or just lying in her bed sleeping. I knew she would have to eat. The inpatient treatment program my daughter was admitted to has some of the top eating disorder specialists in the country. I was amazed by how they were able to get her to eat and gain weight. They formed a united front and sealed the gaps where the ED monster tried to penetrate. While my daughter was in inpatient/residential treatment she was also receiving therapy and learning skills necessary for her to fight for her recovery once her brain function was restored. But the main goal of inpatient treatment is full weight restoration, because it is only after full weight restoration that the brain is nourished enough to begin healing and be cognizant enough to begin the hard work of mental recovery.
The American Psychiatric Association, the organization that creates the Diagnostic and Statistical Manual of Mental Disorders (DSM), which sets the criteria for classification of mental disorders, sets forth guidelines for psychiatrists to follow to determine the proper level of care for treatment of eating disorders. I would have thought that the insurance companies would follow the APA guidelines when doing utilization reviews (which ridiculously take place every 4 to 7 days), but they brazenly do not.
Can you imagine being a cancer patient and being told every few days that the insurance company is going to decide whether you need to receive treatment and they are not going to follow recommended treatment guidelines or consider your doctor’s recommendations? Or what if guidelines and your doctor dictated that you needed ten chemotherapy treatments to eradicate the cancer, but the insurance company decided that eight was good enough? Basically, that is what happened to my daughter. After four weeks of inpatient/residential care, my daughter’s psychiatrist believed that she continued to meet the APA guidelines for 24/7 care and that she needed such care. However, our insurance company (Humana), based on their own “internal guidelines” and without consideration of the APA guidelines or the recommendation of my daughter’s psychiatrist, decided that she could step down to Partial Hospitalization Program (PHP) and refused to continue to authorize coverage for her inpatient/residential treatment.
At this point my daughter was not fully weight restored, so we decided to do something known as plussing where we kept her in the inpatient/residential program until she was fully weight restored (which was about another week) and paid the difference between the cost of PHP and the cost of residential care. Full weight restoration is essential in order to have any chance of a sustained recovery! My daughter’s treatment team wanted her to stay in residential care for an additional week after weight restoration so that they could transition her to a weight maintenance meal plan. However, we were concerned that if we paid for another week of residential care with the insurance company paying for PHP, then when our daughter actually transitioned to PHP the insurance company would not pay for all the PHP she needed. Unfortunately, that meant that during her first week of PHP she was not allowed any meal passes and any snacks she ate with me were packed for her so she did not get the full benefit and experience of PHP. Exactly two weeks from my daughter’s transition to PHP the insurance company called late in the day and informed my daughter’s treatment team that that day was her last covered day in PHP. Their decision was based solely on a time frame. They did not take into consideration that she still met the criteria for PHP. In fact, according to her psychiatrist she even met the criteria for residential care. They also did not allow any time for us to transition back across the country and reconnect with her outpatient team. They were just denying coverage!
In an effort to provide my daughter with the best opportunity for recovery, we decided that we were going to follow the recommendation of her treatment team and pay out of pocket to continue her treatment in PHP. Those additional twelve days were critical in getting her to a place where she is now owning her recovery and able to live independently with the help of an outpatient treatment team. The treatment team my daughter had as an inpatient was the same team she had in PHP. They understood that the work they were doing was not going to “cure” my daughter, so they trained us, her parents, to carry on the work of recovery after she was discharged. And because she was 18 years old they individualized her PHP program and taught her how to maintain her meal plan and fight for her recovery.
My daughter will tell you that her time in treatment was hell and she never wants to go back. Had we allowed the insurance company to dictate her treatment, she might already be on her way back to that hell.
An insurer is a fiduciary which means that they must act in good faith and with undivided loyalty to those they insure. Our insurance company did not do that. Rather, their loyalty was to their stockholders and to their bottom line. They made their utilization decisions based upon my daughter’s weight and the number of days she had received treatment rather than on her physical and mental status and the standards set forth by the APA. They made up their own rules to suit their bottom line and in so doing they jeopardized my daughter’s life. We are fortunate that we had a home equity line of credit that we could tap into to pay for the care that the insurance company refused to pay. Many do not have the funds to be able to cover the cost of necessary treatment not paid for by their insurance company. Insurance companies seem to capitalize on this and on the fact that most of us do not have the emotional energy to fight them when we have been fighting for our child’s life.
Now we continue with our appeals to our insurance company. In the interim, we carry the financial and emotional burden of this debt! Our attorney’s fees are likely to be higher than the amount we paid for our child’s treatment, but we will exhaust all of our appeal rights and we will sue our insurance company to require them to do their fiduciary duty in the hopes that no more of our children will have to suffer longer than they need to or die because they were denied proper treatment.
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