Exhaustive list: families live a mix of perplexity and insecurity with cuts – Nacional

Maristela Barros Mayer Ferreira, vice president of Agra
Maristela Barros Mayer Ferreira, vice president of Agraa, with her daughter Clarice Jannine, 36, autistic (photo: Juarez Rodrigues/EM/DA Press)

The decision of the Second Section of the Superior Court of Justice (STJ), on June 8, defining that health plan operators start to adopt the so-called ‘exclusive list’ instead of the ‘exemplary list’ – used until then -, that is, that companies be released from covering procedures that are not included in the National Supplementary Health Agency (ANS) list, a reason for indignation, revolt and apprehension among parents, guardians and health institutions.

Maristela Barros Mayer Ferreira, mother of Clarissa Jannine, 36 years old, who has autism. She warns that the impacts of the new taxing role are disastrous, mainly because the treatment that has already started is completely lost. “Any change in routine for someone with autism is already impactful. Now, you will break or restrict and, who knows, you will even have to change the care clinic, leave a private clinic that meets the health plan and go to a line at SUS It’s not easy, it’s very sad. Families will lose a lot.”

She is also vice president of the Nossa Senhora das Graas Disability Support Association (Agraa), which is located in the Carlos Prates neighborhood in BH.

The institution is a non-profit, charitable institution, run by parents and educators of people with intellectual disabilities and autism spectrum disorder (ASD). “We were hoping that the votes would be in favor of the explanatory role, which is what has been used until now. But an exhaustive role will greatly restrict the services, especially the therapeutic ones. It is difficult to say how much time you will establish to help the development of a child with autism , 20, 30 sessions. This is unacceptable”, he comments.

Also read: Health plan begins to reject treatments after exhaustive list

“Only those who see the reality of a child with autism know that this care is continuous, long-term and sometimes indefinitely, because each development depends on a technique, a methodology. , we understand that it was a defeat, he won what is on paper, we regret it and we have no perspective going forward”.

Maristela emphasizes that the decision of the STJ is regrettable: “I have a personal reality at home, my daughter is 36 years old, she comes from the 1980s, at a time when autism was not treated. It was neglected by the government due to lack of policies at the time. Today, there is service, but on paper. The truth is that families complain that in SUS health centers services are restricted to 15, 30 minutes and a once every 15 days. With the pandemic, the service was totally precarious. The impacts are dramatic and we cannot measure the damage to the future of these families”.

When thinking about Clarissa, Maristela reveals that “once again I see myself suffering, because I and other parents, when we founded Agraa, it was to help other families not to go through what we went through in the past, for having our children neglected by the care and neglect of public service. As Clarisa’s mother, I’m just sorry. She doesn’t fit into this service, especially in the early intervention, since she was completely subtracted. And now history will repeat itself with other families”.

The lives of millions of people were sentenced to death because of six votes. Six people decided the lives of millions of people, among them that of autistic people. God have mercy on those who voted in favor of the exhaustive list and strengthen us as a civil society to fight for public policies that provide quality and efficient therapeutic care. And even if it’s too late, that we never give up on the goals and rights of each one, each person, each family, each person with autism

Maristela Barros Mayer Ferreira, vice-president of the Nossa Senhora das Graas Disability Support Association (Agraa)

Maristela points out that when families are now able to receive care through agreements, it should be read that care through an agreement is not necessarily because the families are wealthy: “Many or most of them have an agreement with the supplementary health system, since the health plan very expensive”.

The immediate consequences, points out the vice president of Agraa, are the disruption of care, children who will lose the link with professionals, will lose their routine and go back on what they have already advanced. “The consequences are immeasurable. We don’t know how they will be met, how they will develop and the impact on society 10, 15 years from now, when they are adults.”

“Don’t give up, fight”

Without losing hope, she believes that she needs to fight: “We are demonstrating, with our parliamentary representatives, mainly at the federal level – both in the Senate and in the National Congress. Many of them are outraged and have already expressed the defense of reviewing the decision, but everything will now depend on the presentation of a project to be voted on again”, says Maristela.

“Unfortunately, when we talk about early intervention, which is the care of children in the first six years of life, we realize that this will not include them. These children are doomed. Some will survive, because they will meet professionals and entities, such as Agraa , which will serve voluntarily, through sponsorship, as we do. But, in general, if we consider that in Brazil we have 2 million people with autism, they are doomed to neglect.”

Understand

Many procedures will no longer be covered by operators. The decision will affect the treatment of thousands of patients who had guaranteed access to therapies, medications and surgeries in court, since the plans are not required to cover procedures, treatments, therapies, surgeries that are not included in what is determined by the ANS.

If there is any hope, that the decision of the STJ does not oblige the other instances to have to follow this understanding, but the judgment serves as a guide for the Justice.

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