Thank you for the opportunity to comment on the proposed Applied Behavior Analysis changes within Appendix D of Virginia’s Medicaid program. I recognize that the purpose of the changes is to balance the cost of publicly-funded healthcare in Virginia, and focus services on prevention and away from crisis-management overall.
As the redesign is so broad, I am focusing my comment on ABA specifically. My biggest concern with the proposed changes surrounds the following:
The diagnostic restriction of Autism/Provisional diagnosis of Autism to qualify for ABA services is based on and perpetuates the false belief that ABA and Autism are synonymous. The research indicates that ABA can be, and is, used effectively across diagnoses, and is not diagnosis-specific. At one point, ABA didn’t have codes to bill for services and everything was done through single-case agreements and private pay. Admittedly, we’ve done an excellent job in the field of behavior analysis of marketing our effectiveness with the Autistic population, but the reality is that the things that make ABA effective in supporting individuals with Autism, work for all people who could benefit from ABA, regardless of diagnosis. ABA is used effectively for ADHD, OCD, PTSD, Traumatic Brain Injury, Dementia, and a litany of other diagnoses. ABA is individualized, irrespective to diagnosis, as it focuses on the environment rather than the individual. ABA works from the “outside in” versus the “inside out” as with cognitive therapies, so it cannot be replicated with other Medicaid-funded home-based programs offered. My concern with this restriction is that individuals who need ABA will either be disqualified from ABA services, or provided less-effective services, leading to, best-case scenario, lengthened treatment time due to slower progress, and ultimately an increased cost.
For example, let’s take a hypothetical Virginian that I’ll call “Virginia.” Virginia is 8 years old and has diagnoses of Reactive Attachment Disorder, Sensory Processing Disorder, ADHD, and ODD. Virginia lives with foster parents in a rural area. She’s often overwhelmed by her environment, which, combined with her attachment history, makes attempts to teach Virginia self-regulation skills difficult. Virginia's team has recommended ABA services, as Intensive-In-Home nor outpatient were effective for her. There are few opportunities where she is regulated enough to instruct her, and it takes longer to develop rapport with her due to her attachment history. Virginia also struggles with ADHD symptoms, and exhibits hyperactive motor and verbal activity, which is exhausting for her caregivers, who already struggle to bond with her. Under the proposed changes, she isn’t able to qualify for ABA services because she doesn’t have an Autism Diagnosis, despite satisfying the other MNC with regards to having limited functional communication, severe social impairments, frequent intense behavioral outbursts, and sensory integration challenges.
With the new changes, Virginia’s guardian has two options:
If Virginia goes with the first option, (her auth was approved for 8 hours, due to not being diagnosed with Autism), or the second option, due to the slower pace and less effective treatment, Virginia’s behavior becomes too much for her caregivers, and she changes foster placements. Now the process of obtaining services begins again, as she’s located in a different county, and Virginia is outside the service area of the private provider that was initially selected. If Virginia is approved for EPSDT, but for fewer hours, it impacts her ability to build rapport with her caregivers, and her foster family doesn’t feel like the service is effective; they begin cancelling sessions, which results in no progress being made and Virginia discharged. Now Virginia bounces around between foster placements for several years until her behavior is much less adaptive, her hyperactivity is worse, and she has collected a new PTSD diagnosis. Virginia, now 13, requires a residential placement and crisis services, has few community connections, and when she ages out of foster care when she is 18, statistically with her high ACE score, will either end up involved in the Department of Corrections, in and out of a substance use disorder program, unhoused, and/or requiring more intensive public assistance (housing, Food Stamps, etc.) which all ends up costing hundreds of thousands of dollars or more across her lifespan. It could be argued that if Virginia has a child and the pattern continues, then we’re looking at millions of dollars (and unnecessary trauma) just for Virginia and her child(ren) alone.
In this example, Virginia is one person it could be argued got a tough start in life, or fell through the cracks. If Virginia’s story is the same as just 25 people out of the 8.8 million in our state, however, we have just increased our spending by millions of dollars because we went with the option that cost less in the short term by limiting services to a population who would most greatly benefit from them.
My last concern regards the ABA assessment requirements. There are 2 parts to this: the first is the “in person” requirement for assessments, and the second is the extensive nature and follow up of a comprehensive diagnostic evaluation.
The “in-person” requirement limits assessments and unfairly biases against families who live in rural communities, speak English as a second language, have no/unreliable transportation, or who are unhoused. There are also portions of comprehensive assessments that include diagnostic inventories, scales, interviews, and other data collection by multiple sources, in order to consider a diagnosis. Not all of this has to be in-person. At times, it is beneficial for certain individuals to be observed remotely, so that the member is not as impacted by the presence of the diagnostician. This subject-bias can be avoided by offering telehealth as an alternative to face-to-face if the clinician can provide a rationale, at their clinical discretion. Additionally, a “comprehensive assessment” is comprehensive by nature. The tools listed (ADI-R, ADOS, CARS) are all multi-hour assessments, between the assessment itself, the review of data, and the write up necessary to diagnose. Due to the extensive nature of these assessments and the time commitment, waitlists for comprehensive assessments are often months to years long. What happens when Virginians with provisional diagnoses, diagnoses that are complex or not straight-forward, such as those with extensive trauma histories or medically co-occurring diagnoses, or who live in high-needs areas, are unable to get a comprehensive evaluation by the 12 month deadline? This could result in MCOs having room to authorize a less appropriate dosage of services, or families opting to disengage from services completely, resulting in more restrictive, emergency care later. Culturally, some families do not want to get a comprehensive assessment that would carry a label, resulting in being ostracized from their community and support network, instead of a screening tool plus meeting MNC, or a non-diagnostic specific assessment tool.
I urge DMAS to remove the diagnostic requirement limitation for ABA Therapy, or add clarity to the language for the process of applying for EPSDT services for those who do not meet the diagnostic requirements for both initial and continuing stays that reflects the current criteria that if the member needs the service, they can obtain it through documentation of the need, and the authorization is commensurate with the level of impact of the symptoms documented in the MNC. This failsafe is a must to prevent Virginian youth from falling through the cracks, resulting in exponentially increased costs associated with their care. Removing the “in person” criteria, or modifying it to allow for clinical judgement of the LMHP, and/or alternatives to the comprehensive evaluation requirement would remove the unnecessary burden, cost, service disruption, time, and cultural bias that would exist if the language remains as-is.
Thank you for taking the time to read my comment.