Relatives of autistic children complain of lack of care in Carapikuiba – 06/06/2022 – Daily life
Relatives of autistic children and adolescents in Carapicuiba, in the metropolitan area of Sao Paulo, complain about the lack of support from the municipality. Complaints range from lack of care and therapy at city caps (psychosocial care centers) to supply problems.
Housewife Christian Martins Simao, 41, is one of the mothers who said she was unable to access treatment for her daughter, Monique, 18, in Caps.
According to Christian, her daughter was diagnosed with severe autism when she was five years old, but she never received care at the center.
“Sometimes he goes to the city’s polyclinic with a psychiatrist, but he does not receive treatment, therapy or medication.”
Jacqueline Jovina Rodriguez Teodoro, 42, a nanny, faces similar problems. She is the mother of Pedro Henrique, 13, a mildly autistic person who has been caring for Caps since the age of two, but has recently lost contact with the place.
“During the epidemic, she stopped taking professional therapy. They then canceled several appointments with a psychiatrist and now, they say, she’s disconnected from the caps,” Jacqueline said.
In addition to the lack of treatment, another problem raised is the difficulty in removing supplies. Shirley Botelho Costa, 60, says the municipality has denied the rights of autistic children like her 4-year-old grandson.
“My grandson is allergic to the diapers they give, but they refuse to provide anything else. They don’t even give the baby food. They don’t even give him the basic medicine he takes,” said Shirley.
Regarding Monique’s case, the city of Carapicuiba simply says that she is being monitored by a polyclinic specialist and the Family Health Program team. As for Pedro’s situation, the city government says “the health department is at the disposal of the family so that care for Caps infantile can be resumed.”
When asked about Shirley’s allegations, the municipal administration says “supplies and diapers are being delivered properly” and that Henry has been a patient of Caps Infantile since 2014.
According to Paula de Figueredo Silva, coordinator of the CAO (Operational Support Center) of the Public Prosecutor’s Office for Persons with Disabilities at the Ministry of Public Works in Sao Paulo, the rights of autistic persons are protected by the Constitution, the International Convention and the PCD. Statutes and laws establish national policies to protect the rights of individuals with ASD.
Thus, the promoter explains that autistic children are entitled to an inclusive education that must be practiced on the basis of a separate educational plan developed by the Secretary of Education.
“This will be included in regular education and the government has a responsibility to adapt to the needs of the child. Adapting school supplies, bringing the most suitable teaching methods for that child, using support professionals, AEE (special education services) or even specific school transport”, Paula says.
In the area of health, the logic is similar. There is a need to create a single therapeutic project, making recommendations for comprehensive and multidisciplinary care based on the specific needs of each individual and the network available in the city.
Specific drug or supply requests can be answered by taking them to court, but demand is needed and reasons need to be proved.
Paula says family members who find it difficult to ensure the rights of their autistic relatives can apply to the MP or the Public Defender’s Office.
“The person must go to the prosecutor in his area and he, knowing the situation in the municipality already and previous cases, can choose the non-judicial way to have this dialogue with the manpower or to proceed on the judicial route on behalf of the person.”
The citizen is also likely to file a petition for the death penalty based on a 2001 public civil action related to the matter. However, the promoter warns:
“It came to fruition before the incorporation process and the foundations that are used today. Therefore, we need to align this title with today’s guidelines and identify which level of manpower should be activated,” said Paula.