CPB Behavioral Therapy and Advocacy Services, LLC thanks DMAS for the opportunity to comment. As an ABA provider, we operate in a rural area, which presents its own unique challenges. Below, are our main concerns with the ABA provider manual changes.

We support DMAS’s efforts to clarify the requirements governing ABA services, strengthen documentation of medical necessity, promote family involvement and care coordination, and ensure that services are appropriately individualized. We also appreciate DMAS’s explicit recognition that requests exceeding 20 hours per week may be considered through the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) process.

THE 20-HOUR WEEKLY PROVISION SHOULD FUNCTION AS A UTILIZATION-MANAGEMENT THRESHOLD, NOT A BENEFIT LIMITATION

The proposed policy states:

“Services are authorized based on medical necessity and may not exceed 20 hours per week, except as authorized under EPSDT review.”

We appreciate that the proposed language expressly preserves the availability of EPSDT review for services exceeding 20 hours per week. However, the phrase “may not exceed 20 hours per week” could be interpreted as establishing a categorical limit on the amount of ABA available to Medicaid beneficiaries absent a separate EPSDT exception.

We request that DMAS clarify that 20 hours per week is a utilization-management threshold, not a limit on the amount of medically necessary ABA that may be covered.

Medical necessity should be determined based on the individual beneficiary’s clinical presentation, functional impairments, treatment goals, treatment response, and need for the requested intensity of intervention. The number of hours requested should not itself establish whether treatment is medically necessary.

MEDICAL NECESSITY AND TREATMENT INTENSITY SHOULD BE BASED ON INDIVIDUALIZED FUNCTIONAL NEEDS

The proposed admission criteria identify several clinical characteristics, including communication deficits, social impairment, self-injury or aggression, disruptive or repetitive behaviors, and sensory integration difficulties. We recommend revising these criteria to more clearly distinguish diagnostic eligibility from treatment intensity.

A beneficiary’s diagnosis establishes eligibility for an autism-specific benefit; the intensity and scope of treatment should be determined by the beneficiary’s individualized clinical presentation and functional needs. We recommend that the criteria focus on clinically significant impairments identified through comprehensive diagnostic and behavioral assessment, including direct observation, caregiver report, standardized assessment instruments, and other clinically appropriate methods.

We recommend that the proposed criteria be revised to address  the following domains, which generally align with the current edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) diagnostic criteria for autism spectrum disorder (ASD): 

1. Communication deficits, identified through comprehensive diagnostic evaluation, norm- or criterion-referenced assessment, direct observation, and/or caregiver report. Examples may include absent or limited functional communication, pragmatic language deficits, unintelligible or echolalic speech, or receptive and expressive communication deficits.
2. Social-interaction deficits, identified through comprehensive assessment, direct observation, and/or caregiver report. Examples may include deficits in social initiation, response, acknowledgment, engagement, social reciprocity, social reasoning, or interpersonal relatedness.
3. Age-inappropriate maladaptive, disruptive, or harmful behavior, including self-injury, aggression, property destruction, pica, elopement, or other behaviors that interfere with health, safety, adaptive functioning, or meaningful participation in home, school, or community environments.
4. Inflexibility, disruptive, obsessive, repetitive, or ritualized behavior, when such behavior interferes with health, safety, adaptive functioning, learning, independence, or participation.

This approach would better align the medical-necessity determination with the beneficiary's individualized functional needs.

The proposed policy requires direct family involvement “at a minimum weekly” and identifies assessment, training, observation, progress review, and goal updating as components of family involvement. We support meaningful caregiver participation as an important component of effective ABA services. However, a mandatory weekly participation requirement could operate as a hard cap or become a basis for denying or reducing medically necessary services when a caregiver encounters circumstances that temporarily prevent participation. Family participation should therefore be addressed through individualized clinical planning and documented efforts to engage caregivers.

We recommend that DMAS require providers establish:

• a clinically appropriate caregiver-participation plan;
• provide caregiver training and education consistent with the beneficiary’s needs;
• document efforts to engage caregivers;
• document barriers to participation when they occur;
• modify training methods or scheduling when clinically appropriate; and
• avoid terminating or reducing otherwise medically necessary services solely because of barriers to caregiver participation when the provider has made reasonable efforts to facilitate participation and the client continues to benefit from ABA.

DIAGNOSTIC TOOLS SHOULD BE IDENTIFIED AS EXAMPLES, NOT AN EXCLUSIVE LIST

• The proposed policy identifies specific diagnostic tools, including the ADI-R, ADOS, and CARS. CASP recommends that references to specific diagnostic instruments use the phrase:
• “including, but not limited to”
• This language recognizes that qualified diagnostic professionals may appropriately use other validated diagnostic instruments or combinations of assessment methods based on the individual beneficiary. CASP recommends applying this terminology consistently throughout the policy wherever examples of diagnostic or assessment tools are provided. The policy should also recognize the importance of the diagnosing professional’s training, expertise, clinical experience, and knowledge of the beneficiary when evaluating diagnostic documentation.

In addition, our families have trouble finding diagnosing providers. In many cases, our wait lists for ABA assessments are 6-18 months long. Some of our diagnosing facilities, cut off the diagnostic age at 8 years old, which makes it difficult for our older families to get diagnoses and/or be revalidated. In addition, this becomes a barrier to care. While telehealth evaluations aren’t ideal, this is oftentimes, the only option for our rural families. Losing access to these assessments could become the difference between accessing help and not accessing help.

Lastly, with being in a rural area, access to services are already limited. By moving to an autism only diagnosis, this will prevent those children without an autism diagnosis to go without any sort of services in rural areas. This is an area that potentially needs to be addressed as our children may be left with even less options for services overall.

Respectfully,

Crystal Peterson Barker, BCBA, LBA