Questions re: TEFRA qualification [Arkansas]

I'm hoping some knowledgeable people around here can help me figure out where my family may stand with regards to TEFRA (aka the Katie Beckett Medicaid waiver).

Our 5-year-old daughter has struggled with behavioral issues for about three years now. We suspect that she falls somewhere on the autism spectrum, but frankly are not far along in the process of getting her fully evaluated for that. (The wait time in these parts is currently 12-15 months.) To date she has no diagnoses of any kind, but the local education co-op did determine in Spring 2023 that she qualified for pre-K special education sessions with a behavioral therapist employed by the local school district, and as of last week she has a new 504 accommodation plan at her new elementary school.

Earlier this year, during her annual wellness exam, her pediatrician referred her for evaluation with physical and occupational therapists. Based on their evals, she was recommended for 2 hours of PT and 2 hours of OT every week to help address a variety of issues including her troubles with transitions, her anger management, her unwillingness to share, and so on.

At the same wellness exam, the pediatrician also referred our 8-year-old son for PT and OT evals. Those evals determined he would benefit from 1 hour of PT and 1 hour of OT each week. He exhibits some signs of ADHD and anxiety (and the therapists even suggested he could probably stand to be evaluated for speech therapy), but again, he has not been formally diagnosed with disorder or disability.

Almost immediately, the therapists encouraged us to apply for TEFRA through the Arkansas Department of Human Services — if approved, we could pay for supplemental insurance that would help cover any costs of therapy not covered by our primary insurance provider. (My health insurance isn't bad in most cases, but it only covers 30 therapy sessions per year.) They said that they never knew of any of their patients being declined coverage, and went so far as to walk us through the lengthy application process. They were confident that both children would be approved. Yes, we'd have to pay a monthly premium, because we're not a low-income household, but we were basically guaranteed to get the green light (in their opinion, at least).

Well, we learned late last week that our son's application was denied. Apparently the medical review team that reviewed our son's application decided that his case was not severe enough to warrant approval, based on the PT and OT evaluations they obtained from his therapists. Our daughter's application is still under review, but given that the review team is probably looking at the same data source (i.e., PT and OT evals), I'm pessimistic about her chances of approval.

My questions:

– Neither child has a formal diagnosis of a behavioral disorder — no professional has said "Your daughter is autistic according to X" or "Your son has ADHD according to Y." All we DO have are records of their pediatrician referring them for PT and OT evaluation and their therapists confirming via eval that they need PT and OT. I'm wondering whether that's insufficient, and that a diagnosis of a concrete disability is needed. Is a record of a doctor saying "We need to get this checked out" and a therapist saying "We checked it out and noticed this and this and this and recommend that" not enough?

– From all my reading of TEFRA, it seems like the program is designed primarily to aid families with children who have more severe issues than the ones my children exhibit. At first I was surprised we were encouraged to apply, but again, the therapists we're working with insisted that (to paraphrase) "everyone who does PT and OT gets approved."

– I'm still gathering information, but so far, the only thing I can get out of the DHS folks is that we can appeal the decision about our son and / or reapply, but that we'll need to provide more evidence than what the review team looked at (namely, the PT and OT evaluation reports). What else is necessary? They didn't request his pediatrician's records, which would probably have just said something in the notes about referring him for evaluation based on concerns my wife and I expressed during his wellness visit. Is that the missing piece?

I'd love to hear some thoughts from folks who are knowledgeable about TEFRA. What do you think?

submitted by /u/Puzzleheaded-You1449
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