A Father's Letter

From: [name deleted]
Sent: Wednesday, December 15, 2004 10:50 PM
To: Bill McDonald
Subject: Re: Request for Info

Hi Bill,

Sorry for the delayed response. Things have been very hectic as the holiday season arrived and I wanted to be able to give this proper attention. I'm happy to share our reflections on what led to our selection of Laurel Hill Inn (LHI) as the eating disorder treatment facility for our daughter. For now, I would like our impressions to be kept anonymous, at least insofar as being attributed to my daughter or our family by actual name. If you would like to share our impressions as part of the process you've described to me, it is okay provided you maintain this anonymity.

Our daughter's decision not to return to college for the Fall semester of her sophomore year was made in late August, less than one week before we were scheduled to drive her back to school. Her doctors advised residential treatment as the best course for recovery.

Our daughter had been struggling with treatment on an outpatient basis since May, and had also gone through six months of outpatient treatment a year and one-half earlier when her eating disorder was originally diagnosed and we thought successfully treated, until it resurfaced during her first year of college. Making the decision was a huge event in our family's life and created what truly was a crisis environment as we faced the enormity of what we were dealing with and what needed to be done. Complicating matters was the fact we were now dissatisfied with the current treatment team over its ineffectiveness. We began an intensive process of finding new resources and gathering as much information as possible, as quickly as possible, so we could move forward. Early on we connected with the director of a leading outpatient treatment facility near our home (in the metropolitan NYC area), who functioned as a well-informed advisor. This advisor, along with a several other specialists we turned to, began suggesting different in-patient programs for us to investigate. Ultimately, four programs emerged as options for further evaluation. They were The [facility name deleted] in [city deleted], [facility name deleted] outside of Boston, [facility name deleted] in [city deleted], and LHI.

The investigation process began first with online research, followed by telephone inquiries, then a visit to [facility name deleted], LHI, and [facility name deleted], respectively. Because of the distance, a trip to [facility name deleted] in [city deleted] wasn't an immediate option. During this process we were also learning how my company's insurance coverage would or wouldn't apply to our daughter's medical condition. It became clear that our coverage was highly limited for residential treatment and that we would have to pay personally for the majority of the cost. This represented a substantial financial burden for us but we were determined to find the means to be able to offer this level of care to our daughter, because we believe it was the only effective way for her to get better. We knew the entrenched nature of her mindset and the extreme degree the eating disorder was affecting her life, as well as her brother's and ours, demanded an immersive residential program. From all we had learned and personally experienced, we firmly believe the deep-seated psychological component of an eating disorder required very experienced and thoroughly considered care, provided by well-qualified professionals in a sensitively designed, supportive setting, for a long enough time period to break the eating disorder grip over body and mind, and bring about a solid basis for lasting change. Therefore, we did not feel we could make our decision solely based on cost and insurance coverage.

The web presence for each of the facilities and their programs was generally high-caliber, although we found considerably greater detail offered by LHI and [facility name deleted] compared with [facility name deleted] and [facility name deleted].

The phone inquiries yielded results that began to differentiate the programs. [facility name deleted] fielded calls by what seemed to be a general customer service representative. The answers I was given were fairly general and clearly not being provided by someone particularly close to the caregiving. We learned the program was capable of supporting upwards of 40 women at capacity. I was required to call back the next day to speak with an insurance coordinator and when I did so, was informed by the next representative that there wasn't a separate insurance coordinator and that the prior individual could've/should've taken my insurance information. This was a small sign that didn't inspire confidence. We scheduled a visit to the facility for several days later. My next call was to LHI where I reached Linda McDonald. Linda spent a substantial amount of time empathetically answering all of my questions and providing details about LHI's program. We were pleased to learn the program only had capacity for 8 or 9 women, which indicated more individual attention would likely be offered. Linda and I were able to get reasonably specific about my daughter's issues and how they might be addressed at LHI, although Linda explained she wasn't part of LHI's treatment team. Nonetheless, it was clear she was well-informed about eating disorders and how LHI approached treatment. This gave us a much better feeling about the program and manner in which our daughter would be treated. This first impression was very favorable. After a couple of follow-up calls and an intake phone session with my daughter, we were able to schedule a visit. Next I spoke with an intake coordinator at [facility name deleted]. Although it was clear this was a larger program than LHI, and was housed in dedicated buildings which are part of a large psychiatric hospital complex, it was a smaller program than [facility name deleted] (I recall the number of clients as being somewhere in the low 20s), and the intake coordinator was very well-informed, very patient and empathetic, and offered insight on our daughter's potential fit within the program. At this point we considered [facility name deleted] a viable option with some promise, but were put off by the distance from our home and also by the institutional psychiatric hospital setting. Finally, I spoke with a representative from [facility name deleted]. It was very difficult to reach anyone there directly. All calls were answered by machine and weren't returned for a day or so. Once I did connect, I was speaking with a representative with reasonably complete information, but not someone apparently involved in the nuances of the program. It was difficult to arrange a visit, but I was able to do so finally in conjunction with our visit to LHI. We learned the program was geared towards girls and younger women, from age 13 through age 23, and that there was no real separation by age. The size of the program was fairly small, I recall the number of clients to be around 14 or 15.

Next came the visits. Our first trip was to [facility name deleted]. [facility name deleted]'s physical plant appears to consist of two main buildings -- a housing building also containing dining and medical resources, and the "[name deleted]," the administrative building which also has meeting rooms for group therapy. The facility's parking is situated behind the housing building. When we approached the building, we passed several trailers which apparently are used for family therapy sessions. We eventually found our way to the [name deleted] where our daughter was interviewed by a young LSW who was very dry and seemed to speak in generalities. My wife and I joined them after the interview and were able to ask questions. We were not met by or introduced to anyone who would be involved with the treatment program. The LSW was polite but cold with little to no empathy evident. We learned that the average length of stay at [facility name deleted] is four weeks, the reason stated as " . . . that's how long most insurance companies will cover." Because of this short duration, they regularly release patients while patients are well below an ideal body weight, provided the patient is on an upward trend of weight gain. The LSW gave us a brief tour of the two buildings, both of which were not well-kept, were poorly furnished -- group therapy rooms had folding steel chairs and threadbare old sofas, papers and other detritus were strewn about, lighting was subdued, carpets worn, walls drab with layers of client artwork and tape residue, all of which contributed to a very depressing impression on each of us. As we left the facility (walking past the trailers!) we all agreed this was not a program or environment conducive to recovery, inasmuch as we disagreed with the short duration of treatment, we had no awareness and therefore impression of the professionals who would provide the treatment, and the physical plant was so completely counter to feelings of comfort and well-being we knew to be necessary for our daughter to feel warmth, security, and optimism.

Next we visited LHI and [facility name deleted] on a one day trip. LHI's facility you are well familiar with. We found it to be a beautiful Victorian style house, well-decorated and maintained. The location is a typical New England small town neighborhood, the grounds are carefully landscaped, the lighting and decor in the house are warm, the client bedrooms are nicely furnished, the group therapy rooms spacious and comfortably appointed, the dining room very warmly decorated with lots of elegant woodwork and lace, the kitchen spotless, and everything appeared so well thought out. Linda gave us a thorough tour and then our daughter was interviewed by the associate clinical director -- a PhD who also would likely be our daughter's therapist -- and then by the primary nutritionist while Linda met with my wife and me for almost one hour. After our daughter was through with the therapist interview, the therapist met with my wife and me to answer our questions and offer an opinion about the suitability of LHI's program to our daughter's situation. The therapist was very insightful, enthusiastic, and seemed genuinely concerned and understanding of our situation. She was very optimistic about what LHI could offer. We left with extremely positive feelings about the program, the place, and the people. We had as solid a sense possible of how life for "S" at LHI might be, and under the circumstances, we could see real potential for "S" to respond well to the LHI program.

We then drove to the [facility name deleted] less than one-half hour from LHI. We knew [facility name deleted] was part of a large psychiatric hospital complex, and pulling onto the secluded grounds, we quickly were impacted by the stark contrast to the comparative "normalcy" that LHI's setting and architecture conveys. The [facility name deleted] building is a renovated 2-story brick building from what appears to be pre-WW II. We knew the program there was affiliated with and largely staffed by professionals from [school name deleted] Medical School, and was well-endowed by the [facility name deleted] family. We had been told by one of our advisors that a substantial amount of money had been spent on its design and renovation, and that it was sensitively laid out to best serve women in treatment for eating disorders. This information pre-disposed us to have positive feelings about the program and the facility. We entered the building from the front entrance which faces a very large parking lot. Just inside the entrance we were faced by a glassed-in nurse's station and several older nurses in white uniforms, clean but institutional-styled walls and floors, and imposing locked steel doors. We were unable to meet with the program's director whom we were told normally conducts these tours (we were aware of this when we scheduled the visit), but were guided by one of the staff psychologists. Our guide was perfectly nice and answered all of our questions, albeit in what we all observed to be a detached, almost rote manner. The client's rooms were very spare, basic dorm room style set-ups, and our overall impression was of a very cold, brightly lit institutional/locked-down setting. Most of the clients we saw during our tour appeared to be younger teens. The dining room was what we remember to be a windowless, almost claustrophobically small cafeteria type room with handwritten mealtime rules posted on the walls and tables covered with drab plastic tablecloths. Without question, we felt we'd be in essence "institutionalizing" our daughter by sending her to this program, despite the fact their credentials are so good.

After these visits, we agreed that further consideration of [facility name deleted] seemed unnecessary because we expected we'd have similar feelings to our impression of the [facility name deleted] physical facility. It became clear to us just how important our daughter's sense of well-being, comfort, and optimism would be to her outlook on residential treatment, and how significantly this was shaped by the setting and her initial impressions of each program we were considering. Furthermore, we learned that the daily cost of [facility name deleted] was nearly twice that of LHI and [facility name deleted] (these two were similarly priced, with LHI slightly lower). [facility name deleted]w was slightly less than [facility name deleted] but several hundred dollars per day more than LHI and [facility name deleted].

So, in the end our decision on LHI as the best program for our daughter was easy and quite obvious to us. And I'm happy to report that after her 9 weeks at LHI, and now one month having passed, we definitely feel this was the right choice. While we know that recovery from an eating disorder is a long, continuous process, we see such tremendous progress in our daughter and are so grateful for all that LHI has given her and us. She quickly adapted to the program there -- although it was very difficult initially which was to be expected. She committed herself to following the program thoroughly and this motivation for maintaining her weight gain has not flagged. She reached her goal weight range prior to discharge and continues in this range. Her treatment team at LHI represents a very high bar to be reached by the treatment providers she has back home and will have when she returns to college. Her current treatment teams have remarked to us how impressed they are with the thoroughness of LHI in their coordination of care for after their program. We were able to visit our daughter on a weekly basis and watch the progression of treatment unfold. There is absolutely no question that she would not have been ready for discharge at 4 weeks, as likely would have been the case at [facility name deleted], and as our insurance provider deemed was called for at LHI. We had no choice but to pay personally for the continuation of treatment and are grateful LHI's program was geared for a typical stay of 8-10 weeks. It is distressing that insurance companies deem 4 weeks as the norm for discharge, in conjunction with their respective formulas for basing coverage on reaching comparatively less than ideal body weights. This fails to account for the deep-seated psychological basis for most eating disorders, and the ensuing need for a longer continuum of residential care for the client to gain a genuine and lasting foundation on which to build long-term recovery. It is equally shocking to us that an insurer would provide coverage for [facility name deleted] and [facility name deleted] yet not for LHI.

I hope this accounting of our experience is useful feedback for you. Sorry for its length, but I thought you might appreciate the detail.

Best Regards and thanks again,

[Signed by a father]