Awareness, Insurance & ED Training
As an advocate I think what need to change now is:
More awareness – it’s not a choice, it biological. It’s a real illness. People die!
Proper access – why are insurance “doctors” with 0 eating disorders experience making life-death decisions? Why are insurance allowed to say “not medically necessary” when the professionals treating your child say differently?
Specialized training and education – many licensed psychiatrists don’t ever receive ED education beyond diagnosing criteria, same thing goes for many therapists. Due to that, HUGE mistakes are made, signs are missed and opportunity for early detention and treatment doesn’t occur.
In a very close future I hope no parent ever has to fight for access to treatment, ever has to suffer due to under qualified unknowlegable professionals, ever has to fight the insurance to provide coverage, ever has to worry about being blamed. Research shows that there is a biological/genetic component to eating disorders, so I not only fight for my child’s life but potentially my grandchildren or their children. As a parent you wish for “better” for your children, a better education, a better job, a better life, well that includes a better health care system, a better insurance system and a society that is better informed regarding eating disorders and their devastating consequences.
~ Celia Robicheau, MA, CAGS, Worcester Public Schools
Celia Robicheau, founder of The Dirty Laundry Project, advocating for change in Washington D. C. This is her family’s story.
My 11-year old daughter was diagnosed with Anorexia Nervosa restrictive type in March of 2014, however I knew something was wrong in January. She became so health conscious, she wanted to be a vegetarian, she was losing weight, and she was always in a bad mood. We had multiple visits to pediatrician’s office and emergency room (ER); I met with school officials, she had a therapist and a psychiatrist due to her anxiety disorder and I kept bringing up all my concerns.
I kept getting brushed aside though- the ER doctors said that her blood tests were within the low average of normal so there was nothing they could do; the pediatrician’s office put a call to a Registered Dietician who gave us an appointment for late May. The therapist said it was a symptom of her anxiety and that she would keep working with that; the psychiatrist kept saying “We will wait and see.” When I told him that she was baking up a storm but didn’t eat any of it, his response was “that’s just great, she found an outlet for her anxiety!”* The school told me that they noticed she had lost weight but they thought she was growing.
All the while, I called every mental health hospital and program and every eating disorder program in Massachusetts and the answers were “Sorry, we don’t do eating disorders”, “Sorry, we don’t service your daughter age”, “Sorry, we don’t have any available beds.”
In the first week of April we ended up at the ER twice, both time we were sent home, because “she was not sick enough.” We returned to the emergency mental health room and sat for hours and hours only to be told “just go home and eat.” I then took her back to our pediatrician. I broke down in tears, and told the doctor “my daughter is dying, she is killing herself and nobody is helping. I have done my part: I have a therapist, a psychiatrist, I have brought her to the ER, I have brought her to EMH, and to you, I need you guys to start helping me, because she is going to die and it will then be on all of you.”
The pediatrician knew our family, he knew Rebecca. He had been seeing her for years and had just examined her the August before for her school physical, and the child he was looking was a shell of the child he knew. She was a bag of bones, with pale skin, sunken cheeks, dull eyes, with falling hair and wrinkles around her mouth were there was no fat anymore. He immediately made calls to an eating disorder center and convinced them to evaluate her even though my daughter was 11 and the program started at 12. They told us to come by the following day to register but I didn’t wait, I went right from the pediatrician’s office to the program. They admitted her to their inpatient program the following day, it was Good Friday. By Easter, she had an nasogastric tube to feed her.
We were very present while she was inpatient and that was not well received. The facility was very depressing, they seemed to have a lot of staff, but the staff didn’t interact with the patients. At this facility they had children from the age of 11 (my daughter) to senior citizens. We felt pushed aside, as we were the reason for our daughter’s illness.
One of the nurses accused us of “calling too much” and asking too many questions. We were told us that if we were dissatisfied maybe we should look to go somewhere else. We were very dissatisfied, but unfortunately there was no other choice for my daughter. We were there 43 days, After a week of my daughter repeatedly telling the staff that she was having thought of self-harm and suicide, she was left alone in her room, where she attempted to hang herself. After that, I feel that Rebecca was pushed out of the door due to the fact that the facility thought we were too intrusive.
Four days later Rebecca had to be hospitalized at another facility, were she remained until July when our insurance carrier felt that she was healthy enough to go home with Intensive Outpatient (IOP) services. The hospital felt that she should have gone to residential at another facility. Those who had spent two months treating my child felt that she needed to step down to residential center followed by Partial Hospitalization (PHP) and then an IOP program. Boston Children’s Hospital advocated strongly for her to go through a step-down model, however our insurance denied us. The insurance doctors without ever seeing my daughter or evaluating her decided that she was ready to go home right from the hospital with nothing but IOP services 3x/week.When my daughter came home, she was eating only five foods and having to have anti-anxiety medication 15 minutes prior to each meal.
Now THAT is a fortune that is 100% the TRUTH!
However, from that Good Friday to now we did all of the research- we read articles, followed the peer support forum Around the Dinner Table, contacted advocates, read books, asked questions, and we felt that we were prepared to do the work at home with hand-picked providers, an ED doctor and Family-Based Treatment (FBT) therapist at Boston Children’s Hospital, a Nutritionist in West Boylston, and a Therapist in Worcester.
We brought our daughter home, still very underweight, very sick, and not able to understand what was happening to her. We fed her, we sat with her for hours, we prepared meal after meal, we become deaf to rages, and we avoided flying objects. We become brick walls, we become therapists, we became drill sergeants, we lived “Life Stops Until You Eat” and we turned into warriors against the eating disorder.
Little by little our daughter started to make progress, the light went back into her eyes, the meals become easier, the smile was easy and we felt she is back. We still every day, prepare her meals, monitor and coach her as she eats and rejoice in having our child alive.
We are all over the state and paying out of network fees but we feel we have found our team. Financially, we are in a very tough place now, because of the lack of available resources, the high insurance deductibles and copays and family expenses as we deal with this illness.
Thank you for reading and sharing our story.
Celia Robicheau, MA, CAGS
Worcester Public Schools