her name isn't High Acuity

This has been quite an adventure. We have gone from a level II placement to Duke's ED to CRH, then to a PRTF in Winston-Salem. We had several unpleasant incidents with law enforcement agencies, who, although CIT trained, were very inappropriate and threatened me and her foster mom with DSS. The PRTF was unable to handle her, so they dropped her off at Baptist Hospital's PED, where she remained for several days because there didn't seem to be beds anywhere else in the state. Baptist didn't want her because she was too high acuity, but finally they had to admit her into their unit, where she remains because neither UNC nor CRH could take her. She has been off-line quite a bit, so they changed her BIP, which seems to be helping her; she isn't requiring nearly as many prn's. The unit Wii is a great motivator and one CNA in particular has really been a strong advocate for her during her time there.

While we were still in the ED, I brought in someone from CPPR who informed HHS. I do feel like her rights under ADA were not observed during this time, and that we could have very easily added a DX of PTSD to her already long list. It would be interesting to see what the ACLU would say about this. I hope this information will make it to our legislators, who may think they are saving money by closing down facilities, but they aren't. Medicaid took such a big hit on her stay in the ED; luckily in the unit, she will fall into Criterion 5. That is a relief to me. Her present medical team agree on her DX of DBD, ADNOS, and S-RELD. Someone had mistakenly given them the DX of RAD, which is the cheap and easy DX for a kid like her, but most people agree that isn't accurate. She was also assessed for PPD but they didn't feel like she fell on the AU spectrum. She has been visited once during this stay by the hospital GAL who checked to make sure I wasn't hospitalizing her so I could go to the Bahamas for R & R or something like that. My big frustration at Baptist is that they have apparently never heard of SOC and so I feel shut out sometimes, although that is improving. I have a great LSW at the hospital who is very helpful and a very kind medical student has called me daily to update me, although he isn't important enough to get his own acronym.

Our QP from our CABHA has been working hard to fill out applications to other PRTFs, even though she can't be paid for this work because that would be double-billing Medicaid. Another member of my CFT, also a QP and a LSW, is helping her, and my friend who works for MHA FAN is as well (I am on their PAC). We have to keep our LME, which is OPC, informed and keep her PCP up-to-date. Right now it's looking like the waiting list for a bed in a PRTF will be about six weeks.

I'm also concerned about where her LEA is, since she has an IEP (SED and OHI) that guarantees her a FAPE under IDEA, and she is not getting that. She needs to be receiving services from a SLP, but the hospital doesn't offer that since, in theory, they are short-term. I am hoping that she will be able to get ESY services in the LRE so she can catch up a bit. The hospital offers an IAEP, but it's somewhat cursory. I could call the ECAC; they are always so helpful, but our circumstances are complicated.

So there is the update. If you understood that, God preserve you. You are either working in a terribly broken system or you are trying to navigate your way through it.

Me? I spend my free time driving back and forth to Winston-Salem. I'm reading a mystery series where the house is always clean, there is always enough money, justice is always served, the ending is always happy, and they never use acronyms. And they have servants. I don't need any more realism these days.

Oh, and her name isn't High Acuity. It's Elizabeth and she is the little girl caught in this mess. That's her with her beloved cousin Lindsay, who isn't allowed to visit because she is JAC— "just a cousin."