I’m currently here, it’s my 3rd time since 2018, but my 1st stay since finally getting properly diagnosed with ARFID, SPD, and Autism. I’d be happy to chat with anyone about what I’m experiencing here. It’s easier to give all the details via a phone or zoom chat. Lmk if any of you would like to talk with me. I’m happy to help give intel.

For anyone interested in this program, I just found out that they are NOT taking out-of-state residents, so only NY residents who can admit directly through their hospital will be considered. Just FYI.

There is no age cutoff for the adult program ! I was just there .. it’s a 10 day protocol give or take a few days based on needs.

**cross-posted by admin from client general forum

When were you there? Beginning of 2021
What level(s) of care did you do (e.g., inpatient, residential, PHP, IOP)? Inpatient at Golisano Children’s Hospital
How many patients are there on average? I have no idea, it was during peak COVID and I didn’t meet anyone else on the unit.
Does it treat both males and females? Yes
Do they support the gender identities of transgender and nonbinary people? As far as I can tell, absolutely. I’m personally cisgender but the eating disorder program is run by the adolescent medicine team who cares a lot about respecting diverse gender identities, and I had a couple of clinicians who were not cisgender.
How often do you see a medical doctor, psychiatrist, psychologist (therapist), nutritionist, etc? Doctors did rounds every morning between 9-10 am and visited as needed. For meds, I saw a psychiatric nurse practitioner every couple of days or as needed when I had questions. They seemed insistent that I needed a med change because hydroxyzine does not work for me, and that is what they gave me before each meal even though I didn’t express high anxiety. I was assigned a lovely social worker who met with me about every other day or as needed. The dietician saw me about once a week, so only a couple times during the stay. We would review my meal plan, exchanges, and she would answer any questions I had about the food.
What is the staff-to-patient ratio? Not exactly sure as I was in isolation the entire time, but it felt like there was a great deal of staff members for me as a single patient.
What sort of therapies are used (e.g., DBT, CBT, EMDR, etc.)? Just basic check-ins with a social worker, as well as some music therapy.
What were meals like? 30 minutes to finish each meal, nurse sat in a chair across from me, parents at every meal despite my requests to not have them involved in my care. If you don’t finish in the allotted time, you get an Ensure supplement that is equal to more calories than the initial meal. Hydroxyzine and simethicone were available to ease mealtime anxiety and physical discomfort. A few days into my stay, clinicians began involving my parents in the meal preparation.
What sorts of food were available or served? I don’t really remember, but there were a wide variety of foods served at each meal like fruit, sandwiches, burgers, oatmeal, pizza, etc. It was pretty good for hospital food. They really liked serving milk / juice with every meal. Snacks included things like pretzels, yogurt, and fruit.
Did they supplement? How did that system work? Yes, they offer Ensure Plus in 3 flavors, which they gave to me a lot more in the first couple of days during the refeeding process. If you don’t finish your meal or snack, you have to drink Ensure.
What is the policy of not complying with meals? I was not very compliant during my stay because it was a coerced hospitalization. However, as an adult, they could not tube me without my consent or force me to finish everything. There was a lot of compromises that happened during my stay, though they were extremely unhappy with this. I finished most meals and drank most of the supplement if I was unable to complete. They really dislike noncompliance, however, and only offered hydroxyzine as a “fix” for any refusal.
Are you able to eat vegetarian? Yes, though it limits meal choices, I was able to eat vegetarian there.
Does it work on a level system? No
How do you earn privileges? No privileges to earn as far as I know
What sort of groups do they have? My stay was during COVID, so there were no groups or communication with any other patients on the unit.
What was your favorite group? N/A
What did you like the most? The psych technicians were wonderful, the highlight of my stay! One of them explained that she had been in my exact position, undergoing the exact feelings I was experiencing, and our conversations helped me to get through the 10 days without falling into complete despair. She gave me a piece of advice that sticks with me to this day – “Take what’s helpful and THROW THE REST OUT!” You may hear and experience a lot of hurtful things in the hospital, and you don’t have to carry it with you. Another psych tech told me stories of his travels and volunteer work, the music that gives his life meaning, and in general gave me hope about life outside a hospital room. There was also music therapy, and I got to keep a keyboard in my room and create a CD with my favorite songs.
What did you like the least? The doctors, while very well-versed in the course and medical treatment of eating disorders, were often insensitive and patronizing. They focused solely on healing the body with little consideration for the brain, though that seems to be the norm for inpatient settings. The process of getting me to agree to hospitalization took about 3-4 hours, but I don’t remember most of it as it was so distressing. They insisted on my parents’ involvement and the use of FBT even though I was an adult who did not want my family to be a part of my care. Right in front of me, they told my mom to begin legal proceedings to gain a medical guardianship over me, putting my entire family in an awful position. This created a massive rift between me and my parents and destroyed my ability to trust any given person or medical professional. Though they claim to follow the a balanced “biopsychosocial model,” the doctors lean heavily into a purely biological framework for eating disorders. All my actions and emotions were attributed to being so sick I could not possibly think for myself. I expressed my desire to leave many times, but they ignored my requests until 4 days in, when they finally informed me that leaving AMA would negate any insurance coverage. I never lied about my behaviors or feelings prior to being hospitalized here. Essentially, I learned how to be just deceptive enough to never be put in this position again, which has been detrimental to my mental and physical health. I never intended to recover, but this program has kept me “stable” in fear of returning for the past 2 years.
Would you recommend this program? In short, yes – if you’re motivated. It fulfills its purpose of medically stabilizing an individual, and they’re able to connect patients with other programs to step down to after discharge. Their team are experts in treating EDs. However, this expertise is bounded by an overly medicalized understanding, where the ED becomes an external monster possessing the body and mind. Their philosophy did not mesh with my experience/perspective, and trying to advocate for myself often felt like talking to a brick wall, because whether I was being honest or not, all my words were treated as lies. This did not motivate me in any way to be genuine — only fear did that. The level of coercion and patronization I experienced haunts me to this day, and in terms of healing on a holistic level, this place set me back very far. I understand that my admission was marred by coercion, however, and and I could see it being very helpful if the process was voluntary.
What level of activity or exercise was allowed? Once my electrolytes and heart were stabilized, I was allowed 30-minute walks at a “leisurely pace” around the hospital. Other than that, I was not allowed to exercise, though there was surprisingly little supervision to ensure I followed this instruction.
What did people do on weekends? The same as weekdays, though there was a lot less support staff.
Do you get to know your weight? No, weights are blind.
How fast is the weight gain process? For me, 2-3 pounds / week
What was the average length of stay? Around 10 days – case-by-case basis
What was the average age range? I have no idea as I didn’t see other patients, but they serve individuals of every age. They told me that they regularly see older adults, though I don’t know whether those patients are kept in the children’s hospital or on the general floors.
How do visits/phone calls work? Visits are allowed and there is a phone in every room.
What is the electronics policy (e.g., cell phones, iPods, Kindles, laptops, tablets)? You are not allowed to have any personal electronics, but I made an agreement to have my laptop as needed to complete schoolwork.
For inpatient/residential: Are you able to go out on passes? No. I didn’t leave the hospital until the moment I was discharged.
What kind of aftercare do they provide? Do they help you set up an outpatient treatment team? I was provided with a list of individuals to contact after discharge (dietician, peer support, etc.). They really pushed for residential or PHP, but I was unwilling as I wanted to immediately return to school. So they referred me to an IOP program near my school. Many options and support contacts were provided, including a peer supporter and care coordinator.
Are there any resources for people who come from out of state/country? Not sure
If applicable: How is the program responding to COVID? (Less patients, virtual programming, no visitors, masks, social distancing, etc) (keep in mind this was January 2021) I was given a COVID test upon admission, and everyone wore masks the entire time. I had no interaction with other patients. The only people I saw the entire time were my parents and clinicians.