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By: Génesis Dávila Santiago

06/29/2021

A Spanish version of this story was published in Todas

Her days start early. Before the COVID-19 pandemic, she had to divide her chores with her husband and get ready to take their three children to different schools, cook them different meals, and transport two of them to different therapy services. It would be assumed that with remote education, Mariela Sanchez Davila’s routine would have been easier, but it is not.

“Now that everything is virtual, I think that I get more tired,” she says with a brief smile while wearing a black t-shirt on which a colorful design reads “autism.”

Jeremy, her 13-year-old son, suffers from autistic spectrum disorder, a neurological and developmental condition that affects his behavior, social interactions, communication, and learning, according to the medical encyclopedia MedlinePlus.

To help him, both parents maintain a rigorous routine that starts with hot chocolate in the morning, followed by oatmeal. If for any reason, the oatmeal is brought before the chocolate, he will respond, “It’s not like that,” relates to his mother.

In the middle of the conversation, Sanchez Dávila’s phone starts to ring, and behind a screen, a girl with smiling eyes peeks out, waves, and then expresses to her mother that she is tired. Her name is Suemy, and, according to her mother, she suffers from a sensory disorder that affects her body control.

To work with her functional diversity, both minors receive provisional remedy services, a right acquired in the country’s courts during the Rosa Lydia Vélez case that began in 1980 and culminated in 2002.

At that moment, it was determined that every minor belonging to the Special Education program who could not receive therapy services due to a lack of resources from the Department of Education (DE) would have the right to have the person in charge contract a private entity to offer them services, and the DE would take full responsibility for paying them.

Thanks to this service, Jeremy receives speech and language therapy, occupational sensory, and dysphagia, while Suemy receives educational, speech and language, psychological, and occupational sensory therapy.

“In the case of the provisional remedy, the vast majority of professionals… provide well-specialized and well-individual services. Many have to be certified in many other areas to provide this service, which entails expenses,” explained the mother of the minors and later added that, for many specialties, it is difficult to find professionals. As an example, she mentioned audiology and sensory-occupational therapists.

Changes in provisional therapy remedy fees

However, on March 31, 2016, the Government of Puerto Rico won a lawsuit in the Court of Appeals in which it was determined that the DE was not required to pay higher rates than its resources allow.

With this decision in its favor, the entity reduced the amount it paid to the providers of this service by 20%, according to a document signed by the then Secretary of Education, Rafael Román Meléndez.

Even so, evaluations of the provisional remedy services rates did not cease. On May 19 of this year, the DE sent a letter to the providers in which it indicated that it would reduce the payments it makes to them again.

For the mother of the minors, these price adjustments jeopardize the quality of services received by the special education population in the country and imply greater difficulties in finding people willing to offer provisional remedy therapies.

“You can see that these people (the authorities) have not closely seen the need for these children and what mothers go through because to get a good service, you have to fight,” she said with a look full of firmness and indignation.

They stop, for a year, the adjustments to the rates

According to Victor Moreno, therapist and spokesperson for the Association of Professionals and Providers of Therapy Services (APPST), the new rates were based on a study that used the prices of the Health Insurance Administration and a collection system developed by the Centers for Medicare & Medicaid Services. He assured that the methodology presents inconsistencies because, according to the professional, they did not use the billing codes correctly.

“The results were very far from reality,” argued Moreno while explaining that the objectives of the medical plans and those of the provisional remedy should not be compared since the former work for rehabilitation, and the second sector works to develop the academic area.

However, he stressed that they presented a report to the Acting Secretary of Education, Eliezer Ramos Pares, in which they detailed the inconsistencies of the study carried out by the corporation Advantage Business Consulting Inc., for which the DE is paying $60,000 from December 30, 2020, until June 30, 2021, according to the Comptroller’s Office page.

Due to the inconsistencies found by the APPST, on June 24 of this year, the DE admitted, through a statement sent to the providers, that it needed more information to make the adjustments to the rates and, as a consequence, they would not modify fees for individual therapy or evaluations for the 2021-2022 school year, as announced. However, he explained that the group therapy fees would be amended as planned.

“We have determined that to establish new rates for evaluations and individual therapies offered by the USPQRP (Secretarial Unit for Complaint Procedure and Provisional Remedy), it is necessary to have additional information that guarantees that the implementation is based on the behavior of the market … Consequently, working groups will be convened to continue with this review process. Due to the aforementioned, we inform that, for the next school year 2021-2022, no changes will be made to the rates of individual therapies or evaluations,” dictates the letter signed by Ramos Pares.

Moreno indicated that the APPST will continue the negotiations and dialogue with the DE and the company Advantage Business Consulting Inc. to reach agreements on the rate adjustments for the next school year.

Conflicts in Special Education Beyond Rate Adjustment

Sanchez Davila is also a provisional remedy therapist, a decision she made years after Jeremy was diagnosed with functional diversity. This time, with her house turned into classrooms and her room full of appointment reminders, she must coordinate the therapies she provides, even though the DE has not paid her for her services since March of this year.

The most recent regulation establishes that payments must be made “within no more than thirty working days,” but the autism specialist assures that she is not the only one who must wait months for the payments that are owed to her.

According to Moreno, some people have not been paid since February.

“It is extremely worrying since they owe us months. That is the policy of the Department of Education. They pay us over 90 days … That non-compliance has persisted for years,” reproached the APPST spokesman.

For him, the price adjustments were only part of the dilemma faced by students who receive services as a temporary remedy, since his fear lies in affecting the quality of education that children receive.

“It’s not only economic, but a series of injustices are being done to children, and it affects us,” he said about the delay in payments and the ignorance of many parents regarding the regulations that the DE must follow.

Even with the modifications in the provisional remedy rates put on hold, for Sanchez Davila, the million-dollar cuts to Special Education proposed by the Fiscal Control Board (JCF) are worrying.

This time, the Steering Committee of the Special Education Class Lawsuit, an entity that advocates for the rights of children with functional diversity, denounced, in a press release together with other communities, that the JCF will subtract $95 million from the Special Education budget. The new cut will remove about $20 million from the Office of Provisional Remedy and $75 million from the Office of the Secretary of Special Education, according to the group of defenders of children with functional diversity.

This situation, according to the group, could cause the DE to run out of money to pay for therapy and Special Education services.

“As a consequence, there may not be money to pay the payroll for Special Education teachers for the next academic year, and indispensable therapy services for our children may not be provided. We are surprised to receive such an attack on our sons and daughters, who have suffered so much from the educational process during the pandemic, to the point that a large number of students in our community were unable to receive appropriate educational or related services,” states the statement.

Moreno, for his part, mentioned that the continuous expenses of therapists in procedures to prevent COVID-19 and their working conditions directly affect the shortage of workers. According to the educational therapy expert, in the last five years, between 20 and 30 providers have left the country.

A 24-hour work

Suemy will be in second grade in August, and her teacher told her that she never imagined watching a mother sweep while she taught the class. Sanchez Davila serves as her daughter’s assistant since she was allowed to be in a small group if she had an assistant. However, her work doesn’t end there. This year, after the resignation of her son Jeremy’s assistant, she too had to fill the position.

The 44-year-old woman assures that her husband divides the tasks with her when he can, but works from 8:00 a.m. to 5:00 p.m. outside the home, so, during the day, many of the tasks fall to her.

“Mothers are really the ones who are doing it 100 percent because, for example, my husband accompanies me and everything, but the one who knows everything is me. If he must take them to an evaluation because I can’t, he does it, but I stay ‘on-call (pending)’,” she says while pointing out that dealing with children with functional diversity is a 24-hour, seven-days-a-week task.

Sanchez Davila added that she listens all the time to mothers who are anxious and frustrated about the future of their children. According to her, children improve with therapies. That was the case with Jeremy, who began taking therapies Monday through Saturday, and, with time, has reduced them because he has improved.

“When services are provided as they should be, children improve,” she insists, emphasizing that these services must be of quality and individual to achieve that improvement. More cuts, she muses, “would be devastating.”