Am I covering all of the bases?
Fellow advocates -
I am writing this post to ensure that I've covered everything that I should with a newly acquired client.
Background:
16 year old MVC status post Grade III Diffuse Axonal Injury (severe Traumatic Brain Injury) and multiple fractures that required orthopedic surgeries to repair. Initial injury occurred January 18th, 2026. Currently at a children's level 1 trauma center in Colorado. Patient has been upgraded to minimally conscious (-) state. Unable to follow commands. Tracks intermittently with her eyes, laughs appropriately. Has had some hemodynamic instability last month (transient desaturation due to breathing pattern with stimulation, now resolved). Nutrition via PEG/tube feeding. Total care at this point.
Dad hired me to look into getting his daughter into an appropriate level of care after being declined by major programs/facilities that deal specifically in brain injury. Facilities including Shirley Ryan, Brooks, Craig, TIRR, QLI, OWL, and Kennedy Krieger Institute. Reasons for denial: No further services offered than sending facility, patient cannot follow commands, one facility saw the oxygen desaturations during that period of time in her care and declined based on that stating «hemodynamic instability). One facility's medical team (Children's Specialized Hospital in NJ) has accepted her, we are waiting to hear what their nursing and PT/OT departments have to say before they will issue an official acceptance/denial.
Current hospital in Colorado is pushing to get her discharged to a skilled nursing facility in her home state. Dad's feelings are that she is „too unstable and complex“ to go home and feels that these facilities denying her admission is proof that she's too complex to be discharged. I have educated him on what „complexity“ means to each facility in their denial, and went over what the patient's vital signs may be like with her new baseline (transient hypertension secondary to stimulation/activity, etc). Her vital signs are now stable, she had a pulmonary work up and the working theory is that enough stimulation was causing her to hyperventilate, blow off enough CO2, for her then to be come apneic, desaturate, then to breathe normally again once her CO2 built up enough, oxygen saturations normalize. This all makes sense to me as an ICU nurse. She is no longer doing this as her medication regime has been further optimized.
My question to any advocate that has the experience to speak to it: Am I missing anything? I have evaluated the brain injury centers around the country and the two that didn't yet have referrals (Kennedy Krieger Institute & Children's Specialized Hospital) now do, and as I said Children's Specialized is leaning on a possible approval for the patient while Kennedy Krieger declined, even after a thoughtful discussion with the director of nursing and the director of case management.
I truly empathize with her dad and he is pushing to get her more time inpatient. His experience there has been disjointed — constantly a new team with a new opinion, medications being changed to optimize her muscle spasticity/pain and neurologic function, rehab physicians told the dad that „she wasn't worth saving.“ The first case manager they had with all of the initial referrals, per the dad, had side conversations with the coordinators to those facilities and made inappropriate comments about the patient. Dad feels that those comments tipped the scale for them to deny her referral. That case manager was taken off of the case after it was escalated. There is also an insurance component here, per the current case manager, they are running out of reasons to justify her continued hospital stay as she is now stable. She's no longer meeting criteria.
We have a multidisciplinary care conference on Thursday. I have a feeling that they will be pushing for discharge during this meeting to skilled nursing. I don't know what else can be done to stop this. I have used the angles that I felt carried weight up to this point, though I was brought in 6 days ago, and a lot happened prior to my being on the case. Dad is at the bedside actively advocating for her as well each day.
The nursing side of me says that this new normal is a hug adjustment for the family, and while he's correct that there was some issues with oxygenation, that no longer actively exists. What other angles am I missing? All meaningful advice welcomed!
Thanks everyone.
How heartbreaking. How intense.
I've messaged Melina Oien in case she has any insights.
I'm going to reach out to a few other advocates to ask them if htey might weigh in… who have both ped's background AND TBI. If you feel like I could exclude the pediatric portion of the outreach, I can certainly widen this circle.
Zhane' Fugate
Rachel Garvin
Mari Pantoja-Smith
Anne Wienke
With your permission, I would screenshot the post and share it in the private FB group to try to drive more traffic to the convo here.
You're approaching this exactly how I would, especially coming in mid-course. At this point, I don't think you're missing anything operational; the issue is how the case is being positioned and escalated.
She likely no longer meets acute inpatient criteria, so the argument to keep her hospitalized is going to fall flat. The stronger position is whether a skilled nursing facility is an appropriate level of care for a minimally conscious patient with emerging responsiveness. You and I both know that it's not.
A few leverage points I would focus on:
1. Anchor the case in a physiatry (PM&R) narrative
You need this clearly documented:
Rancho level (she sounds ~III with emerging behaviors)
Objective signs of responsiveness (tracking, affect)
Explicit statement on rehab potential and need for a disorders-of-consciousness pathway
That framing alone can shift how programs and payers view her.
2. Re-open denials with updated clinical context
Now that the hemodynamic concerns have resolved, this is not the same patient those programs initially reviewed. I would push for physician-to-physician conversations, not just resubmissions.
3. Shift the discharge conversation
Instead of arguing she's «too complex» for SNF, I would ask:
What active neurorecovery interventions will be provided there?
How will progress be measured in a minimally conscious patient?
It quickly becomes clear that SNF is a maintenance setting, not a recovery environment.
4. Expand beyond traditional adult programs; her age matters
At 16, she sits in a pediatric/adolescent window, and some centers are more flexible with minimally conscious patients:
Children's Hospital of Philadelphia
Children's Healthcare of Atlanta
Nationwide Children's Hospital
Texas Children's Hospital
You could also consider adolescent-friendly programs that sometimes take younger patients on a case-by-case basis:
Kessler Institute for Rehabilitation
Mary Free Bed Rehabilitation Hospital (I happened to know someone who was here, and they spoke highly of them).
Many adult programs (such as Shirley Ryan AbilityLab or Craig Hospital) are strict about command-following, whereas pediatric centers are often more open to patients with emerging disorders of consciousness.
5. Escalate through insurance if needed
If a specialized program is clinically appropriate, has anyone pursued a single-case agreement or exception?
At this point, it's less about finding a missed step and more about making sure she is classified correctly, not just as severe TBI, but as a patient in a minimally conscious state with potential for progression.
You're asking the right questions. This is a framing and escalation issue, not a gap in your work. Great job! I truly hope for the best with this poor patient. I hope this helps.
Sincerely,
Mari
What’s happening here isn’t that these programs are viewing her as “too complex,” like Dad thinks, but rather that she falls into a very specific category that the current system doesn’t handle well—patients who are minimally conscious with emerging signs of awareness but not yet able to reliably participate. The programs that declined her are largely built around patients who can demonstrate consistent engagement in therapy. When a patient is earlier in recovery—like she is now—they often don’t meet those participation thresholds, even though this is exactly the period where the right environment can matter most.
That distinction may also help reframe things for her dad. The denials aren’t evidence that she’s “too complex” to leave the hospital—they’re evidence of a gap in available levels of care in the U.S., particularly for pediatric Disorders of Consciousness. There are simply very few programs designed to take patients before command following emerges, which leaves families feeling like there must be something “more” she needs medically, when in reality it’s a mismatch between patient stage and program design.
Because of that, the framing of the case becomes really important. Positioning her as “too complex for SNF” tends not to land, because that’s not the variable being evaluated. What does tend to resonate is describing her as an early-stage, minimally conscious pediatric patient with clear signs of emerging awareness (tracking, appropriate laughter), still within the critical neurorecovery window following severe TBI, who would benefit from a structured Disorders of Consciousness-focused environment to support that trajectory. That shifts the conversation from placement difficulty to preservation of recovery potential.
You’ve already done a strong job getting referrals out, and I agree with where you’ve landed. At this point, I would stay tightly focused on programs that are more tolerant of low-arousal or DoC-level patients:
* Children’s Specialized Hospital (NJ) — your strongest current lead, especially since they’re already leaning toward acceptance
* Good Shepherd Rehabilitation (PA) — one of the few programs that explicitly works with pediatric DoC / low-arousal patients
* CHOP (Philadelphia) — large pediatric system that has managed DoC patients even if not formally labeled as such
Also reasonable to consider if the above are not appropriate/available to her:
* Primary Children’s (Utah)
* Phoenix Children’s
* Internal re-evaluation at Children’s Colorado if there’s any pathway for escalation
Where I’ve seen cases turn is often not in the clinical details themselves, but in how consistently those details are presented. When documentation centers on “unable to follow commands,” it tends to push programs toward automatic denial. When the same patient is consistently described as minimally conscious with emerging, observable signs of awareness, early in the recovery window, and now medically stable with prior issues clearly resolved, it can shift how they interpret candidacy.
For Thursday, it may help to anchor the conversation in alignment rather than opposition—something along the lines of not disputing that she no longer meets acute criteria, but emphasizing the need to identify the most appropriate neurorehabilitative environment for a patient at this stage of recovery, rather than defaulting to a generic pathway. If discharge does move forward, the goal would be making sure it’s to a setting that can support brain injury recovery and that there is a clear plan for reassessment if/when her level of responsiveness evolves.
If she does end up needing to step down before a DoC-capable program accepts, framing that as a temporary bridge with a defined re-evaluation window (rather than an endpoint) can help keep momentum and expectations aligned with her recovery trajectory.
This is one of the hardest spaces in the system to navigate, not because of missed clinical issues, but because of how limited the pathways are for this specific stage of recovery. And when it’s a pediatric case, those gaps are even wider. I have a pediatric client currently going through a similar issue.
Hope this helps! You are welcome to reach out to me if you would like to connect and talk directly about your case.
Teri
It's such a bummer that ARU time is now measured in weeks rather than months. :o(
Happy to answer additional questions!
Cheryl Kauffman, PT, BCPA
Seattle Patient Advocates
Only posts in the «advocate referral needed» spaces are fully private and require GNA profile approval to even be READ.
I spoke in depth with the girl's aunt when they were searching for an advocate. I am so sad you are still running into denials. So many wrong steps have been taken when this family is willing to do anything for her. What is wrong with people!?!?
I spoke with some contacts who were willing to help as best they could. I am happy to pass them on to you.
I am not nearly as capable as you with this case, but I am here to lend a familiar ear. I am also available if the family needs anything I can help with for caregiver support.
You all are echoing something I knew from the start: it's all about how she's framed. It was my goal from the start to figure out what angle I can take...how to change how the healthcare system is seeing her. Perspective rules everything, doesn't it? And as an advocate, and a nurse, my goal is always collaboration first...I don't want to go into this meeting opposing things. That won't get my client what she needs.
You all have given me several excellent pieces of information and things to be thinking about. Though I have so much experience, I will constantly be learning and leaning into this amazing community.
Depending on how this meeting goes tomorrow, I may call on those of you who have offered to assist. As a type A personality with a fiery passion for this, I absolutely need to make sure I've done everything I could. My conscious won't allow anything less.
AnnMarie — please do share via the private facebook. All thoughtful comments/advice is welcome.
Again, thank you.