Earlier this year, Abramge (Brazilian Association of Health Plans) released a new report showing that the costs of autism were higher than the oncological costs. According to the data presented, while oncology costs were 8.7%, expenses with ASD reached 9.13% of total medical costs.
The scenario concerns health plans, civil servants, and families dealing with ASD. However, as you point out Mauro Couri, operational superintendent of Unimed FESP, detecting and solving treatment problems for people with ASD is a matter of public health. This is because, for now, the issue is still in a bubble, but it is only a matter of time before the costs start to cause problems in addition to the operators' financial issues.
“There is a great chance that in a short time some operators will fail because of this cost, considering that autism is growing and so is the judicialization. If this happens, these people will have to go to other operators or return to the Unified Health System (SUS), where it may take a year from diagnosis to treatment,” he explains Mauro Couri, operational superintendent of Unimed FESP.
The elements that stimulate this scenario are several. In Couri's view, autism “became an industry. There are people selling 'TEA kit', TEA school supplies, graduate courses for 35 reais Black Friday... I have all these advertisements, courses of 200 hours, 300 hours, 500 hours, because there are no regulations”.
Thus, the lack of regulation encouraged the creation of clinics of dubious origin. In these cases, in addition to generating financial losses for health operators, treatment may be being carried out inadequately, in addition to including families in dangerous legal situations.
With that in mind, the Gradual Group, in partnership with the ISS Institute, created a certifier in Brazil to define who is able to be a supervisor, coordinator, and therapeutic care assistant.
In Brazil, certifications are not yet mandatory. Even so, they help filter out who is really fit or not. Therefore, it is possible to use international certificates, such as: ABAT (Applied Behavior Analysis Technician); QASP-S (Qualified Autism Service Practitioner-Supervisor); and QBA (Qualified Behavior Analyst).
But after all, how did these problems start?
How did it start
The first signs appeared in 2019. As we pointed out in previous newsletter, the combination of awareness and changes in the criteria mentioned in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) increased diagnoses.
At that time, there was some strangeness, but until then, everything was still within the estimated accident costs. Behold, in 2020, the number begins to double in the first semester and to triple in the second. From then on, health players try to understand what was happening.
“What was happening with some smaller health insurance operators - which had local structures and are generally in the interior - is that they started receiving lawsuits and injunctions to offer treatment for autism,” says Mauro Couri. In other words, in the absence of their own infrastructure within the health plan, families and patients were authorized to undergo treatment in other locations and would be reimbursed for this later.
Delving a bit into the legal world, Rogério Scarabel explains how judicial authorization works: “In the first instance, what you see are more personal convictions than technical references. In these cases, there is usually not so much deference. In the second or third instance, the judge is more likely to authorize it, since technical information is presented,” explains the lawyer specializing in supplementary health.
Complementing this scenario, in 2022 the ANS (National Supplementary Health Agency) decided to make unlimited consultations for treatment of global developmental disorders (GDD) - which encompasses psychologists, speech therapists, occupational therapists and physiotherapists - and ASD is one of the conditions that make up TDG.
Before this decision was taken, the limit of sessions for treating ASD in health plans varied according to the plan's operator. Larger operators offered up to 40 sessions a year with a psychologist and/or occupational therapist and 96 sessions a year with a speech therapist. In others, generally smaller ones, the limit could be up to 20 sessions per year with a psychologist; in addition to not covering speech therapy or occupational therapy.
Considering that each person with ASD has their own characteristics, treatment needs to be personalized, which makes it impossible to standardize the number of hours/sessions for each treatment. However, after these two years, “today it is already known that it is really necessary to have a national guideline on how treatment for ASD should be carried out. You cannot simply accept the prescription of a prescription without presenting an adequate therapeutic plan, with technical and clinical justification”, reiterates Scarabel.
In addition, “there are many lawyers taking advantage of the situation, because they take advantage of the loopholes in the law. They defend the patient and win because there is nothing regulated”, adds the lawyer.
With all this, maybe you still think that the problem with all this is the treatment itself... but in fact, it's not quite like that. Let's look at the text below.
Guidelines, Fraud, and Waste
The urgency to stimulate dialogue between the parties involved is due to the fact that the absence of guidelines is encouraging frauds and more waste. According to data from the Institute for Supplementary Health Studies (IESS), fraud and waste are estimated to have cost around 30 to 34 billion reais for supplementary health — representing 11% to 12.7% of operators' revenue.
And where does treatment for ASD come into all of this? According to Mauro Couri: “Some excesses have been observed, especially when a prescription is made requiring the treatment to be a 'super treatment'”.
“Overtreatment” refers to cases in which, even if in practice the patient does not require so much support, some clinics take advantage of the situation by prescribing that everyone needs maximum assistance.
In this sense, the superintendent exemplifies with some cases, such as: “a child who appears to be spending much more time at the clinic than at home or school. That is, up to 50 hours of medical care per week? Or do all cases need to receive Apple computers and special chairs? Is it correct that reimbursements associated with the treatment were around R$ 50,000?”
For some cases, it may be so and for others it may not. To assess this, Couri focuses mainly on the regulation of the profession”behavior analyst” at the Ministry of Labor.
In the view of the superintendent of Unimed FESP, “this profession needs to be regulated urgently. The Ministry of Labor must enter into this situation and require proof of qualification similar to that of the Brazilian Bar Association. We need to have a specific code of ethics for the behavior analyst, since intensive ABA treatment presents sensitive issues, such as reward and 'punishment' mechanisms, used to modify a specific behavior of that child,” says Mauro.
Possible solutions
In addition, among other elements that need to be structured or leveled are: weather of each session; quantity of sessions; metrics; Therapeutic plan, methods on a scientific basis, specialisations that the health professional must have and others.
“Because it's a new experience, we can reverse and offer good treatment, that's the point. It doesn't matter if it's two o'clock or fifty, the prescription must take into account the patient's clinical condition it is the perfect, correct and adequate medical measure that it needs to develop”, reiterates the superintendent of Unimed FESP.
In addition, it is worth noting that the family may end up being involved in fraud due to lack of assistance. “The patient is very distant from the health operator, so they end up being advised by other people, clinics and professionals who are not verified,” adds Mauro. Therefore, certifications and the provision of direct instructions could minimize the chances of families being deceived or coerced into engaging in fraud attempts.
The reality of health operators
For now, according to Mauro Couri, the problems mentioned throughout this article are affecting health operators in a heterogeneous way. In other words, while some are making more losses, others still have their accounts balanced.
“In 2019, my entire cost with autism was 1%, lower than almost every other illness. In 2024, I am at 2.5%. I spend 8% on special material and spend 12% on oncology. Therefore, I spend 2.4% on TEA within my carrier. We have everything under control,” says the operational superintendent of Unimed FESP, responsible for 76 units in the state of São Paulo.
While Unimed has already taken a position in favor of dialogue - in addition to being one of the players that helped to promote the solutions proposed by Grupo Gradual - other operators are afraid to share their data and differ in their way of dealing with the situation. If, on the one hand, some want to talk, others think of more extreme measures.
According to Mauro Couri, a major concern is regarding the movement that wants to demand a change in its legislation from the National Health Agency (ANS). “A DUT (usage guideline) will probably be created to try to curb the situation. If this means difficulty with access, quality, and credibility, health insurance operators will lose credibility. If the ANS approves this way, the measure will go to the legislature in an election year. This will come in every instance and will begin to be a reason - as has happened before - for mothers to chain themselves in front of the STJ in street demonstrations”, estimates the superintendent.
To prevent all these problems from growing, Mauro - like the specialists interviewed in the previous newsletter - advocates that operators, providers, families, people with ASD and others involved participate more in the debates on the subject.
Thus, it would be possible to offer good treatments and still balance the costs - since, at the end of the day, everything is transferred to the beneficiary in monthly adjustments.
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