'His life at stake': how mother defeated health insurance for autistic son

‘His life at stake’: how mother defeated health insurance for autistic son

Bank employee Evelyn Iara Marques, 40, from Campinas (SP), began to notice differences between her son and other children since he was 6 months old. At age 2, she was diagnosed with autism. “I left the office crying,” she recalls.

But Evelyn, a single mother, was determined to give Vittorio the best possible treatment, so that he could have a good development and in an attempt to make up for lost time. His health plan, however, would not cover a specific therapy for his case, called ABA (Applied Behavioral Analysis).

There were several denials of the agreement, among them that the therapy would not be covered because it was not on the list of the ANS (National Health Agency) — the list of treatments and remedies that a health plan must offer.

In April of this year, she filed a lawsuit in court asking that the plan cover better treatment. The decision came in May, and it was positive. “In the words of the judge, the denial of the health plan revealed the violation of the constitutional principle of the right to health, in addition to the fact that, if the injunction was not granted, the beneficiary would be unable to receive the adequate and essential treatment for his well-being. -estar, impacting their communication and development”, explains lawyer Stéfano Ferri, who handled the case alongside his partner, Rodolfo Ortiz.

With a few months in the specific therapy, Evelyn says that the child is “another child”. “He talks, forms sentences, fixes his gaze longer, plays with his imagination, has fun with other children,” she says. “I keep thinking about mothers who are also struggling with their plans, like me, and still haven’t gotten coverage. It’s an anguish because every day without treatment is a day lost in the social life of this child.”

Read Evelyn’s account:

“Vittorio was born premature, I came from a very complicated pregnancy, I had an inverted placenta [mal posicionada].

Until 24 weeks it was ok, everything was fine. After that, the bleeding started and I didn’t leave the hospital anymore. He was born on April 29 and the cesarean section was also complicated, there was a ramification of the placenta, which spread and made it difficult to remove the baby. After he was born, Vittorio was intubated.

Since then, his struggle began to gain weight, get out of the tube, breathe alone so he could go home. The days went by, he gained a little weight, sometimes lost it, went through several pediatricians, until he left the incubator and went to the crib.

After almost 3 months he was discharged, went home and we had routine consultations. It was okay.

But I could see that he had a developmental delay. Some children were already falling out of bed, he didn’t even roll over. I saw that when I breastfed him, he didn’t look at me. But I was a first-time mother, I didn’t have many comparisons.
The months passed and some children his age were already starting to walk. Vittorio didn’t even crawl, he just crawled. Until the speech stage.

He just grumbled but didn’t talk, didn’t come out. I started to get a little worried, I saw other children talking a lot. He at 1 year and 9 months only made sounds. And he had a different way of playing. With a cart, for example, he just looked at the wheels, he didn’t use his imagination.

As he grew up and got bigger, already around 2 years old, he was a hyperactive child, who screamed a lot. I thought it was a little over the top, but I was taking it. One day, at the pediatrician, I couldn’t control him. The doctor said in the can: your son is autistic.

I left there crying. That first time I heard this from a professional was what made me go after it. Until then I noticed some differences, but I took into account the fact that he was premature.

I found a specialist psychiatrist, and we closed the diagnosis of autism. He had a series of guidelines. He would not take any medication, but he had a very exhausting course of therapy.

I am a single mother, banker and work during business hours. I only had time to take him to sessions after 5pm. It was a pain because the insurance only indicated a single clinic, on the other side of the city, which did not have the specialty he needed.

It was when I looked for a lawyer when I saw that I was going to have a lot of problems, I was only having denials of the plan, and the development, my son’s life was at stake. I went to court and, fortunately, got the favorable decision. With the injunction requiring the agreement to guarantee Vittorio’s treatment, we were able to receive care at an institute that has a school for children with disabilities.

If it depended on a plan, my son would be without treatment to this day. I owe the quality of life we ​​have to that decision. With proper treatment, he has become another child: he talks, forms sentences, looks longer, plays with his imagination, with cars, with other children.

Many mothers are not aware of this injunction, or do not even know what autism is like, how the treatment should be.

My wish is for all mothers to seek information and fight for their children, because this will make all the difference in the child’s quality of life, especially for them to achieve their independence.

I keep thinking about mothers who don’t have this injunction, who have limited plan coverage and are fighting for better treatment. You need to present reports, collect documents. In this, time passes, and each day without treatment is a day lost in the social life of this child.

He will continue in this therapy as long as necessary. It is not a health plan that will tell you how long my child needs to be treated, but health professionals.

Today Vittorio is my companion, my partner, he talks to me, tells me about everyday life at the little school. It’s a beautiful evolution.”

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