Just two weeks ago the world commemorated the “world down syndrome day“, as happens every March 21. But Argentines with that condition, and their families, “celebrated” it in the midst of a strong controversy with the government that focuses on the 2022 Census organized by INDEC. The debate grew to such an extent that the Down Syndrome Association of the Argentine Republic (ASDRA) issued a harsh statement stating that “by not registering people with Down syndrome in its statistics, the State makes invisibleit excludes them from any public policy and therefore affects their rights.” An accurate blow to the heart of the official discourse.
“Down syndrome has been known since at least the 5th century. But in Argentina, paradoxically, in the 21st century, we continue without knowing the real number that makes up this population“said Alejandro Cytrynbaum, president of ASDRA. As he explained to NEWS“not planned that in the 2022 edition of the Census ask questions about disability. There are only a couple of mentions related to “difficulties”, but nothing specific neither about this syndrome nor about other disabilities”. And Cytrynbaum recalled that “in the previous Census, in 2010, at least one specific question was asked, although it was a alone, on disability. But this year not even that. You could say that -in this sense- we are worse off than a decade ago.”
For ASDRA, the lack of detailed research on these issues translates into “a true denial disabled people”. The only thing we have is some estimates: “in general terms, it is considered that around 15% of the population has some type of disability”, explained Cytrynbaum. And he clarifies that this situation of ignorance is not something exclusive to the current government but rather “something that we have been registering for many years”.
Statistics
In the specific case of people with Down syndrome no specific numbers on the number of people who suffer from it. “From the point of view of epidemiology, it is known that there are approximately 1.8 children with this syndrome every 1,000 births,” pediatrician Eduardo Moreno Vivot, who is also a medical advisor to ASDRA, told NOTICIAS. And he added that “if we remember that in Argentina about 700,000 babies are born per year, it can be estimated that there are about 1,200 children with this syndrome annually.”
However, these calculations can be very inaccurate. “They are just projections,” they explain from ASDRA. And remember that surely the number of babies born with Down not only varies but it is a number that surely changed significantly Since the recent law legalization of abortion.
According to calculations made by experts from the Society Argentina de Pediatría, analyzing data from the National Registry of Congenital Anomalies “la prevalence is 17.26 per 10,000 birthswhat would i give approximately 1,200 children with Down syndrome. And with these percentages, an approximate population of 70,000 individuals with this condition could be estimated throughout the territory.”
But Moreno Vivot clarified that “it is not a systematic number but projections and that is why the specialized associations consider that not asking any questions about this subject in the current Census is a missed opportunity to learn more.”
Why is this determination important? Because since 2008, when the Argentine state approved the Convention on the Rights of Persons with Disabilities as a Law, it has the obligation to ensure certain rights to its citizens that have to do with health, education, housing, etc. And knowing how many people live with Down today, their age, their education or their state of health, would be essential so that the corresponding state agencies can adequately plan what controls and specific therapies to offer, how many trained professionals are needed, what adapted schools to reformulate or how to think about a special housing policy, experts explain.
On the other hand, in this pathology there are certain peculiarities in terms of life expectancy, which is increasing. Therefore, asking about the age of these people, or if they have a job or determine where they are geographically concentrated are essential data to better allocate resources.
He said something similar to NEWS Bettina Tevere, Delfi’s mother, who was born with Down Syndrome: “With this situation I felt hurt, when I entered to complete the census in digital form I felt that for the State Delfina is not part of this society because it did not include any questions about her “. And she assured that it seems essential to her that people with disabilities be taken into account in the questionnaire because that allows allocating and distributing the resources that the State must provide, whether in training and infrastructure for schools, in therapists or in special recreation. “Even,” he added, “we should think about the near future in residences for the elderly with Down, since the life expectancy of people with this Syndrome is lengthening and today it extends beyond 50 years, something that has been improving. a lot in the last five years”.
Bettina also highlighted that there is an important lack of information about benefits that the State should insure all persons with disabilities. “But there is no campaign and many families do not access these benefits. It usually happens that this information spreads by word of mouth among parents with how imperfect that lane can be. The State should carry out systematic campaigns to disseminate these rights.”
Bone scan
From ASDRA they assure that they have been making this inclusive claim of questions for a long time. “We submitted notes to INDEC and the National Agency for Disability but they did not respond to us,” said Cytrynbaum. (See Box). And the most recent final request was that “the census taker ask at least one single question: is there a person with Down syndrome in the household?
Seeking to compensate for the lack of official data, at the end of 2021 the NGO launched a online survey on your website in which, so far, they have collected 4,000 responses. And this is the current X-ray of Down in Argentina:
- The 66% who do not have a Single Certificate of Disability are minors.
- 58% of those who declare they do not have medical coverage are boys and girls.
- 17% of people with Down, between 3 and 17 years old, did not enter the Educational System.
- 85% of people with Down syndrome are out of the labor market.
- 66% of this group does not have training for employment.
- 0.14% of people with Down syndrome live alone.
Moreno Vivot also recalled that this It is a group that carries many pending debts: for example in education, where vacancies are often lacking and even truly inclusive schools that can receive them. Of course, there are not enough prepared workspaces either. But the pediatrician pointed out other details: “between 40 and 60% of children with Down syndrome are born with some heart disease that may require surgery. And this is a “federal” situation. But taking into account all of Argentina, we do not know if these kids get the heart checks they need. Something similar is verified with specialized therapists. In smaller cities, are there enough trained professionals?” asked the pediatrician. Because obviously the birth of a person with this Syndrome does not occur exclusively in large cities, but occurs throughout the country. And the state must offer and ensure its quality services for everyone, everywhere.
Disability / INDEC’s explanation
In a Article published this week on the official INDEC website, it was explained that “the census questionnaire includes a question in the household module, which seeks quantify the presence of at least one person with difficulty or limitation”. The directors of the technical office clarified that “in order to obtain valid responses, the use of the word “disability” is not recommended because it has different meanings. For example, a sector of the population could associate it with having a certificate of disability.” The organizers clarified that the words chosen were “difficulty” and “limitation” and that they were chosen after doing multiple pre-census tests and “in according to the recommendations of international organizations of experts for the measurement of disability, such as the Washington Group and ECLAC. On the other hand, the censuses in Bolivia, Brazil, Colombia, Uruguay, New Zealand, Italy and Israel, among others, are specified with these same terms. Finally, they clarified that “INDEC may carry out a new Study on the Profile of Persons with Disabilities in Argentina, which It is being planned together with the National Disability Agency”.
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