Unofficial statistics reveal a figure of at least 50000 Down Syndrome in Romania

Unofficial statistics reveal a figure of at least 50.000 Down Syndrome in Romania

 

European Centre for the Rights of Children with Disabilities (ECRCD) and Romanian National Council for Combating Discrimination have the pleasure to invite you to the events dedicated to the World Down Syndrome Day, which are meant to bring to the public scene the Down Syndrome matter.

In the first trimester of the year 2011, the statistical data offered by the Romanian Ministry of Labor, Family and Social Protection show that in Romania live 691.482 registered persons with disabilities. Among these, over 116.000 persons have a type of mental disability. This figure wrongly includes the Down Syndrome persons.

Although the official statistics reveals a number of 116.000 persons with mental disability, this figure is far from being real because of at least 2 reasons: 1. the official statistics provided by the public authorities reflect only the number of persons who officially registered themselves as having a disability. In reality, deep in the urban and rural areas of Romania live many other children and persons with disabilities and who are not informed accordingly about the official steps to be taken. 2. THERE IS NO official attempt to realize a social research targeted on Down Syndrome population in Romania, neither on adults, nor on minors. At the same time we are concerned of the official confusion reflected both at the legislation and public policies level between the notions of INTELECTUAL DISABILITY and PSYCHIC ILLNESS, fact which influences in a negative manner the social protection system” declared Madalina TURZA, ECRCD President.

The persons with disabilities are still confronting with discrimination. The lack of accessibility and reasonable adaptive environment are by far major reasons of concern. Sad is also the fact that discrimination was present also in case of children with disabilities within schools. Romania has made, though, significant progresses in terms of antidiscrimination legislation and legal protection of the vulnerable groups. Beyond the coercive power of the state, we have to acknowledge that discrimination has a negative impact on the human dignity both on psychic and emotional level. We have to understand that within a democratic society we have the legitimate expectation of being treated as human beings and citizens” declared Csaba Ferenc Asztalos, Romanian National Council for Combating Discrimination President.

The first event, the Round Table – “From Disability to Diversity – Individual Standards and Effective Rights for the Children with Disabilities” will take place Wednesday, 21 March 2012, 10.00 am, at the Council Hall – Faculty of Sociology – Bucharest. At this event will participate experts in the field from the public authorities in Romania and the main subject of discussion will be focused on disability discrimination and children rights.

The second event will be represented by the Extraordinary Concert in the benefit of Down Syndrome Children in Romania – Music of Fulfilled Wishes, which will take place at Mihail Jora Concert Hall in Bucharest, on 22 of March 2012, 19.00 pm. The main guests are: Sujeet DESAI – musician and Down Syndrome Ambassador, Cristina ANGHELESCU – prime violinist of Romanian National Radio Station, Romanian National Radio Orchestra, Valentin TEODOSIU – a famous Romanian actor and Paula SELLING a consecrated pop singer.

The third event will represent the informal meeting between the Romanian parents of Down Syndrome children and Sujeet and his mother, Dr. Sindoor DESAI, at LEVOR Meeting Room, in Bucharest, on 23 of March 2012, 17.30 pm.

 

Background Information

The exploratory research conducted by ECRCD in November 2011 on 134 Down Syndrome families show that the parents feel prisoners and lacking alternatives for their children. The reality shows that the poor, but informed families try to find solutions for their children in the public assistance services. The quality and the quantity of the public social services are at least poor and they do not cover the need of assistance and intervention for these children. The medium income families do not see an alternative in the public system services most of the times and they turn to the private ones, without knowing that a therapeutically consistent program requires long term financial costs

DOWN SYNDROME IS NOT AN ILLNESS IS A CONDITION A BABY IS BORN WITH. Down Syndrome consists of a genetic modification at the DNA level, meaning that on the 21st peer of chromosomes, instead of 2 chromosomes there are 3. The existence of the third chromosome reflects in a particular evolution and development of the Down Syndrome child.

 
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