Journalistic Investigations Center

A vaccine turned her little girl into a disabled child. In struggling with life but also with the system, a teacher became housewife, nurse and NGO leader. She is Natalia Cechir who has been fighting for years to get a decent life for her child and for hundreds of other disabled.

 “State Leaves Us on Our Own”

The work day of mothers raising disabled children lasts 24 hours out of 24, without days off or vacations. Although they work hard, they are practically excluded from the social protection system. They don’t have salaries nor can they hope for decent pension. When the children turn 18 of age, the state deprives them even of the right to benefit from medical insurance policies.

“If the state takes care of disabled children under 18 years old, it seems as if they stop existing when they turn this age, and the same for us, their parents,” says Natalia Cechir whose child has become a teenager. Natalia understood that she was waiting to get attention from the state in vain, and so, seven years ago she opened an association to support people with intellectual disabilities, named “Dor,” which has been joined by tens of families. Her office is located right in the room of her daughter Anişoara and her work schedule is aligned to the child’s regime. In addition to all the things necessary for the girl, the room is full of big files with copies of letters to various state structures. In most cases, the answers received from the authorities are formal or…there are no answers at all.

The Vaccine

“I gave birth to a healthy child,” Natalia says. “The problems appeared after a vaccine was administered to her. As a result of the complications, Anişoara became dependant on our help for the rest of her life.” The Cechir family did not think a second to take their daughter to a special school, away from the people’s eyes, as other parents do, but decided to raise her at home and to offer her a lot of care. Being teacher by profession, Natalia had to leave her job and to dedicate herself to her child. Thus, the family has been living for many years now on just one salary – that of Anişoara’s father. From the social protection, they receive only the child disability pension in the amount of MDL 583. This money suffices to buy diapers for half a month. Natalia says that the social assistant has never called them in the past years to inquire about their problems or to offer their help, although they are obliged to do it as part of their work tasks.

“We Don’t Have the Right to Fall Sick”

Due to the stress, many women who take care of their disabled children have health issues, and some of them have become disabled themselves. “The children’s problems worsen each year and so does out health condition because it is very hard to raise such a child in the family and to stay healthy, Natalia Cechir says.
When children reach full age, the state does not offer free medical assistance to their parents anymore. If they fall sick and go to the hospital, families have to pay for the hospitalization.

Another legal paradox is that many times mothers have to renounce their own degree of disability and thus the related allowance because another disabled cannot become tutor of a disabled child. And if the child does not have a tutor he/she does not receive an allowance. The mother of a girl from Chisinau, Lidia, also got caught in this vicious circle and had to renounce her (2nd) degree of disability in order to be able to become tutor of her daughter who has been disabled of 1st degree since her childhood. Lidia had a very complicated surgery a few years ago. Although the doctors told her to apply for a disability degree, she did not do so, being happy that she remained alive as she is aware that nobody would be able to take care of her child for her. As other women in similar situations, Lidia considers herself victim of an imperfect social protection system that ensures certain rights only on paper.

Military Book Asked From Disabled Boy

In order to benefit from disability pension after the child turns 18, families must institute tutorship on them. In order to do this, a lot of documents and money are necessary, parents say. Preparing the whole set of documents costs them several monthly allowances and requires several months of hitting roads.
Striking is also the fact that some parents had to carry their ill children with them through courts to prove their lack of legal capacity. It is hard to imagine how difficult it is to bring a person in wheelchair to a court especially that court buildings are not adapted for free access by disabled persons.

The bureaucratic procedures sometimes become totally ridiculous. When preparing certain documents for their child, one family was asked to present the disabled boy’s military book. This is not out of the ordinary but the boy’s certificate clearly said that he had had the 1st disability degree since his childhood. The officer remained deaf at this argument and the parents had to hit some more roads to bring the requested certificate. 

“Before You Reach God, the Saints Will Eat You”

For instituting tutorship, parents must also undergo an extremely rigorous medical examination. Again, doctors, money, roads. And this is the more unclear as, until children turn full age, nobody cares of their parents’ health. In addition, doctors’ consultations must be paid from the family budget because the mothers do not have medical policies anymore. Families must pay nearly 500 Lei for only two certificates from the Republican Psychiatric Clinic, which is approximately the entire monthly allowance of the child. In addition, certificates from the psychologist, narcologist, oncologist and many others are necessary.
Many families with which I have talked say that this does nothing but tires and impoverishes the parents who have already been stricken by pain. In their turn, the authorities promise to revise the regulations on tutorship and to exempt the families from extra expenses and efforts.

Hope Directed to Authorities

“The law is old; the code that stipulates tutorship and guardianship dates 1974. A government decision is being drafted now on instituting tutorship and reforming the mechanism for establishing tutorship in Moldova. This act implies changing a number of other acts, such as the Family Code and Civil Code but also the law on local public authorities,” says Vadim  Pistrinciuc, Deputy Minister of Labor, Social Protection and Family. In addition, the authorities promise to develop a new type of service by the end of 2010 – personal assistance, which implies that the parents will be hired as nurses for their children and will get salaries paid by the state.
In two Moldovan districts – Soroca and Ungheni – this service has existed for a few years, being instituted by the local public authorities.

A Lot of Money – Little Efficiency

When it comes to increasing allocations for families that take care of disabled persons, the authorities have just one argument – we do not have money. Thus, state aid is minimal while the government pumps huge amounts to residential institutions where children with disabilities are simply isolated. For many years the state has encouraged the institutionalization of disabled children, that is, their placement in special institutions, far away from people’s eyes. Being an inheritance from the Soviet system, such institutions are real ‘ghettoes’ for children with deviations from the norm. The state spends yearly over 30 thousand lei for the maintenance of one child in such institutions. Although at first sight this amount seems huge, it only ensures minimal living conditions to children. Of this amount, only about six thousand lei accounts for the proper care and maintenance of a child. The rest 24 thousand lei are used for the maintenance of old buildings, payroll and renovations. And this happens in the conditions when the families who have chosen to keep their children at home and to not put this burden on the state receive miserable amounts that do not cover at least the essential things. 

Convention on the Rights of Persons with Disabilities – A Salvation? 

In view of protecting the rights of those over 650 million of persons with special needs in the entire world, on 13 December 2006, the United Nations Organization adopted the Convention on the Rights of Persons with Disabilities. The Convention constitutes the first international treaty that recognizes all the rights and freedoms of persons with special needs as equal citizens within the society. It establishes new standards on the access of persons with disabilities to information, education, public space, and labor. In 2007, Moldova signed this document alongside other 81 countries. The Convention has only recently been ratified by the Moldovan Parliament. This thing brings some hope to the persons with disabilities and their families. It remains to be seen if the officials manage to implement in practice the provisions of the Convention.

This investigation has been produced as part of the Journalists for Human Rights Media Campaign, implemented by the Investigative Journalism Center with the support of the US Embassy in Moldova. The authors are responsible for this article.