Identifying Medical Necessity in Services for Autism

Ongoing changes in insurance coverage and fee schedules which are also correctly expecting more details for children with autism receiving 'ABA' services should be responded to seriously and thoughtfully rather than reactively fought or challenged by 'ABA' service providers and related others.

At the same time, there are real benefits in the need to more closely reevaluate what have typically been presumed service renewals often sent with routinely made requests for up to 40 hours of indefinite, often similar looking, services across children with autism. These include:

  1. Presumed numbers of hours for service renewals that are connected more to the diagnosis and less the child are inconsistent with individualized/prescriptive, child- (and family/caregiver) centered treatment services combined with authentic Quality of Life outcomes.

  2. Presumed service hours with unclear timelines and often fuzzy, far overgeneralized outcome statements diminish rather than enhance ongoing assessment, the dynamic reassessment of intervention methodology and the identification of authentically individualized outcomes for each child.

  3. Presumed allocations of ‘ABA services’ are more often a huge disservice to children and families/caregivers leading to less individualized accountability for ongoing strategies, instruction and outcomes by service agencies.

  4. The identification of pseudo-scientific (and mentalistic) methodologies which (a.) exceed the boundaries of behavioral analytic practice, (b.) have little to no clinical efficacy, and (c.) are often incorrectly put into and do not belong as part of behavioral intervention plans (BIP) and/or child-centered behavioral instructional strategies not only violate ethical and treatment guidelines but will, often and correctly, be questioned and tossed by the health insurance provider.

  5. Systems which 'treat' or intend to resolve the autism rather than providing services to the individual with autism (and their family/caregivers) are in direct conflict with - rather than support of - the concept of Medical Necessity in Autism.

What is Medical Necessity in Autism?

In that current service mandates typically define autism by Medical Necessity, a next question becomes what does ‘Medical Necessity’ mean with regards to autism services.

To start, autism is neither a disease nor an illness but part of the developmental (behavioral) spectrum. A subsequent reality and very big problem is that current ‘ABA services’ most often do not – or barely – address true Medical Necessity when they rely on an autism-oriented rather than child (family)-centered, and individualized, service model for children with an autism diagnosis.

Medical Necessity in treatment of more traditional clinical medical need ranging from high blood pressure and asthma to those more acute such as broken bones or appendicitis means that care either directly corrects the diagnosed condition or, at the least, effectively manages/reduces/controls it based on specific sets of accepted best practices in clinical medicine that target the particular condition.

Autism, however, cannot be ‘cured’ nor – despite some of those claims to the contrary – is it a uniquely ‘treatable’ condition.

In other words, it is not the ‘autism’ which specifically generates Medical Necessity but those operant/observable and individualized aspects of the autism profile or, ‘symptoms,’ which can interfere with individual success; health and welfare.

Due to the remarkable heterogeneity of persons with ASD, that which truly interferes; that which truly registers as in need of more directed intervention/treatment must be uniquely identified one person at a time.

It is also true that every behavior deemed ‘atypical’ in a person with autism should not be presumptively identified as an automatic target for intervention, again, because of the 'autism.' Clinical providers across specialities too often mistake individuality; the uniqueness, preferences, strengths and styles; the personality of a child by ‘Autism Blaming’ while overlooking the personhood of the child entirely.

A much better understanding of and respect for these differences constitute whether true Medical Necessity exists.

An Example of Medical Necessity….

Some years ago, I worked for an agency which generally did not do well getting authorization from private insurance carriers for children with autism. On occasion, I became directly involved and spoke with the private carrier on behalf of a family. On one of these instances, the person I talked with first said that they would not authorize services since autism was neither a 'curable' nor uniquely treatable.

It so happened that this particular child had a very high risk target behavior of elopement which could happen at any time and at any place and was the primary reason for the parents’ self-referral to my agency. I asked the agent if they’d provide medical care should the child suddenly run across a street and get hit by a car. To that scenario she, of course, agreed that medical coverage and care would certainly be authorized.

With this, I followed up by suggesting that it might be better to proactively 'treat' the elopement as a specific, medically necessary, ‘symptom’ towards reducing with intent to eliminate the child’s risk of such significant traumatic injury in the first place. I also promised a very clear, time-based and well documented treatment plan in a way that would better fit with the related expectations of the medical insurance provider's Utilization Review process.

The agent immediately authorized behavioral treatment for the child over the phone based on this very clearly defined and high risk ‘Medical Necessity.’

It is not the autism; it is not the developmental diagnosis of autism which identifies Medical Necessity but the range of acute manifestations (‘symptoms’) seen in children with autism ranging from elopement and self-injury, severe communication deficits, feeding issues and sleep disruption to substantially delayed independence with regards to bathroom, personal hygiene and peer participation...among many possible others. Persistent non-compliance, high rates of at-risk motor behavior or the need for constant supervision to ensure safety also quickly create and justify Medical Necessity.

Not only is Medical Necessity present in increased medical risk to the child based on an enhanced potential for injury and direct threats to health/welfare along with both acute and chronic risk but, also, for the potential of long term costs incurred over many years of services to a child which may not be particularly productive.

Though not often identified, another reality of Medical Necessity in a developmental behavioral condition like autism is the ever-present potential by family/caregivers to develop mental health needs and the possibility for deterioration of their personal health and wellbeing over time.

Children with very disrupted sleep or eating routines; children with delayed toileting independence; children who are persistently disruptive; children fundamentally in need of 24 hour a day supervision and constant engagement; children whose behavior may lead to more chaotic family systems overall all also have an impact on health and welfare; on Medical Necessity in Autism.

A Needed Paradigm Shift

‘ABA' services cannot remain autism-specific but must be increasingly focused on those‘symptomatic’ indicators which directly interfere with individual success and progress; with ongoing health and welfare of not only the child but his/her primary home system as well.

The more traditional developmental services offered by ‘ABA’ providers remain relevant to the longer-term success for a percentage - but not all - children with autism. Such services should consistently be preparing children to attend public schools and to have ‘success’ as children based on normative peer and community expectations rather than being an end in and of themselves or turning into a kind of 'competition' with the public schools for services to children with autism. A goal should always be to help create naturally occurring community based supports and services relevant to the child and family/caregivers.

In effect, our primary job as both individual BCBAs - and 'ABA' service agencies - is to work ourselves out of a job one child and one family at a time.

If a patient continued to visit their medical practitioner for the same complaint(s) time after time; year after year, the insurance carrier would likely discontinue coverage for those particular services. But this is exactly what continues to happen in autism services and by far to many autism providers who have simply come to expect service authorization and payment.

Much of the current framework for services to children with autism has often presumed indefinite treatment periods focused on up to 40 hours per week through childhood and, sometimes, into adolescence. This, frankly, is a demand which not only is unreasonable but is also impossible to individually justify and especially in light of the need to establish clear Medical Necessity for services.

While this model cannot endure, adaptation has been actively resisted. As states and insurance carriers are mandating that autism services be justified by Medical Necessity, service requests by autism agencies now go through the same internal Utilization Review process as do more traditional requests for medical care. This, combined with dramatic changes in service obligations by and expectations of healthcare carriers due to health care reform, with still more potentially dramatic changes possible, insurance providers should not be expected to maintain payments for services to children with autism as a forever open ended and revolving door.

An important and often overlooked reality is that there is no one model, no one way to construct or identify service hours which best supports all children with autism and their families. Just as a clinical medical provider must assess their patient and provide the health insurance company with an explicit diagnostic work up and criteria to validate specifically recommended treatments, treatment timelines and anticipated outcomes for that person, it is imperative that autism services learn how and increasingly follow suit.

To engage needed Medical Necessity, explicit outcome data must be collected and presented and anticipated timelines for services identified and consistently respected. The field of autism services would also be hugely benefited in the development of service timeline algorithms based on differential child behavioral profiles and individually assessed need. Ongoing ‘autism’ framed developmental treatment/instruction will not continue viable and does not fit into a paradigm focused on Medical Necessity.

Above all, such a paradigm shift allows service and treatment outcomes to children and adolescents with autism to be intermittently and much more effectively checked, verified, individually modified and justified whereas ‘developmental treatments’ most often do not.

If the field of Applied Behavior Analysis fails to act; fails to take insurance and coverage shifts seriously, the most likely alternative is to have those expectations increasingly created and dictated by the health care providers and their own external resources. This essential work will, however, take time and engender differences requiring commitment, careful thought and resolution.

Dealing with these active and fluid insurance dynamics could also help create an evolution and needed revolution across the models more often used by individual ‘ABA’ service agencies to include taking a different view of autism services and the training required by and expected of practitioners.

Medical Necessity by Outcome Measures

At present, many autism service outcomes are more often ambiguously framed around a perceived resolution of or, at the least, a response more to ‘autism’ than the individual. To remain viable, service outcomes will need to be increasingly focused on specifically interfering/health and welfare and more obviously harmful characteristics (or ‘symptoms’) of autism in the same way blood pressure, pulmonary function or tumor reduction is targeted for payment of services to those with clinical medical conditions. In being served through Medical Necessity, autism will also and increasingly need to be treated using similar kinds of medical (service) algorithms.

Now, I am not remotely recommending that the field of Applied Behavior Analysis engage in still more medical reductionism than is already the case. In this, such a service algorithm designed to address Medical Necessity in autism would more focus on the use of an EFFECTIVE (not generic) and comprehensive functional behavioral assessment process which can, but also may not, include such autism specific devices as the ADOS, ABLLS or VB MAPP – among others – towards a more ecologically driven, comprehensive and descriptive assessment process for each child and family.

Only then will we be able to identify and design ever more prescriptive treatment and instructional systems that consider and directly justifies/identifies Medical Necessity for each child to include determining the child's ability to better fulfill the ‘job description’ of a child; that is, participation in public school with peers and family/natural primary communities; effective social and communication competence; identification of/respect for true preferences; increased independence/autonomy and having success with such expected and fundamental to health and welfare routines as eating, sleeping and self-care/hygiene/toileting.

Consider, for a moment, the medical diagnosis of hypertension where a stable and directly reduced blood pressure is the expected and usually easy to determine outcome. A unique aspect of the ‘symptoms’ in autism, however, is their collateral link to Quality of Life, educational and social access, functional and adaptive needs and a more general state of ‘readiness’ which should also become predictive of less service needs and costs over time. After all, Applied Behavior Analysis teaches that about any intervention which has to continue at the same frequency and intensity over time has not been successful!

Outcomes must focus on how justified and targeted gains connect to the remediation of specific and interfering behavioral, social, communicative and adaptive/functional events thereby increasing the chance for child success; enhanced independence (i.e., less need for constant supervision), safety, health and welfare in and across natural settings.

This is another reason to question key aspects of the current and more widely applied model for autism intervention for children and adolescents. Too often, ‘canned’ intervention/instructional routines and their connected outcomes are selected for what actually are the highly-individualized needs of children with autism. Too often, selected assessment devices are considered sacrosanct even when a child is either not or less well served by their application. Then, when this sometimes pseudo-assessment information is sent to insurance providers to justify another request for hours of services with fuzzy outcomes, a less than positive response from the insurance provider seems reasonable.

This dynamic then often results in the unnecessary but predictable failure for numbers of children. Instead of reassessing the primary autism service delivery and provider model, however, what more typically happens is a request by the autism provider for still more hours for that which hasn't actually been working for the child and family in the first place.

As a relevant aside, a similar dilemma also happens when medications are being used as a primary autism 'intervention.' That is, as behavior continues to increasingly interfere and/or - also predictably - continues to actively deteriorate, instead of reassessing THAT service delivery and referring out to other clinicians who will be more effective, the original clinician may just up the dose and/or add in different medications. And very much like the indefinite continuation of a more generic ‘ABA’ service, such practices are not only often a huge - sometimes dangerous - clinical disservice to the child and family, but they also continue to increase coverage costs and service duration with little to no benefit being returned.

What’s Next?

It is imperative that the field of Applied Behavior Analysis prioritize these issues with the realization that treatment/intervention must, first and foremost, represent the best clinical practice available in our field and, second, always and only be individually justified for each presenting child AND their family/caregivers based on documented Medical Necessity with direct consideration given to primary environments.

All of this will require a reordering of priorities of the still dominant autism service model over a clearly designated and foreseeable period towards one which can clearly identify and effectively target Medical Necessity in autism. But to do so will also likely lead to increased stress for a percentage of practitioners and agencies alike whose training and emphasis has been limited to the over learning of selected autism services ‘constructs,’ canned programs and/or a behavioral model combined with the subsequent overgeneralization/over application of that information.

The literature also actively informs that clinical professionals across disciplines who have been explicitly trained in a given intervention construct and/or diagnostic model often see everything through that filter.

Consider the old metaphor that if all one has is a hammer, everything is much more likely to look like - or be diagnosed as - a nail.

When people hear ‘autism,’ they have come to increasingly believe that there is a unique service or treatment model called 'ABA.' Some - both providers and families/caregivers alike - may become intolerant when told there that 'ABA' is not a strategy but the field of Applied Behavior Analysis which offers many individualized strategies and technologies to even better serve children and adolescents with autism (others, too!). This should include individualized planning which, if effective, will also reduce hours and service need over time.

Such dynamics can, unfortunately, lead to active resistance to pursue and receive badly needed training on intervention, instructional practices and priorities. And when this happens, it makes it even more likely still that service requests will be challenged by health insurance providers.

While there can, and has been, legitimate cause to initiate legal and class action against insurance carriers when they make efforts to be more prohibitive of state legislation and legal mandates towards providing reasonable and effective services to children with autism, the field also must look inward – and in the mirror – towards real and the most effective change for our clients; their families/caregivers.

Understanding Medical Necessity in Autism is a key.

Those who can adapt the quickest using Medical Necessity as an authentic framework for, and justification of, individualized services to children with autism will receive the most positive response by insurance carriers while being far better able to provide a service which will really matter in the lives of children with autism; their families and caregivers.

One initial framework towards this end could be setting up more concentrated and blended

behavioral/instructional services combined with differential fee schedules while demonstrating explicit outcomes framed by Medical Necessity. This can, for instance, include service packages that contract based on agreed to outcomes and individualized child/family assessments which then drives more prescriptive therapeutic and behavioral recommendations and outcomes.

Rather than holding onto the presumption that ‘ABA’ services ‘treat’ autism, emphasis should be increasingly paid to Quality of Life; health and welfare; long term skills; learning/social readiness and communicative competence along with authentic independence based on existing strengths, interests and preferences...and the 'job description' of a child with Medical Necessity the constant priority.

Medical Necessity in autism must prioritize the very carefully targeted and deliberate redirection of and intervention for those behavioral concerns which interfere with daily success while compromising health/welfare to include directly placing the child, as well as their family/caregivers, at higher risk for more intensive services and costs over time.

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