Aliona fights for children with autism
Aliona is no longer just a mother fighting for her son, but she is an important part of civil society in Moldova.
Aliona Dumitras had to leave Moldova to get a proper diagnosis of her son Cristi. This was now ten years ago. Cristi was four years old when they realised he had autism. Still there is no possibility to get this kind of diagnosis in the country and very few doctors are trained in this field. Aliona keeps fighting for a change. Please read our interview with Aliona.
- My name is Aliona Dumitras. First of all, I am the mother of a 14-year-old boy who has Autism Spectrum Disorder (TSA). Then, I am the Executive Director of an NGO Alliance called FEDRA and the Project Director of the IM partner organisation SOS Autism. I am fighting for the children's right to health since 2006 when my own child was diagnosed with autism. This happened in another country, because in Moldova nobody knew nothing about autism. So, this is when my fight for the health of children with autism began, because in my country they have no chance to recover or receive the services they need! Contemporary diagnostic tests do not exist, there are very few doctors trained in the field and the only scientifically proven therapy that helps this category of people (ABA therapy) is unauthorized in the Republic of Moldova. There is already a black market of poor quality services and the State provides no support. The lack of compensated medication and the lack of services to empower people with autism, all this forced me to start the fight.
How do you fight for children´s right to good health?
- Thanks to the projects we implement, I can fight strategically, not just as a physical person, as a mother of a child with autism, but also as an active representative of the civil society. We are involved in change of public policies, drafting of new provisions within the existing legislative framework, lobbying, and advocacy. We also raise awareness of the general public about these conditions, the problems faced by people with autism and their families. We often do this through our own example.
What have you achieved with your efforts?
- We have established the first Center of Ability and Resources in Autism in the country, where 45 families can benefit of rehabilitation services for children with autism. In the health care field, compulsory screening tests were introduced for the early detection of autism. We are on our way to draft the framework regulations on coverage by State authorities and the validation of behavioral therapy. We had also raised the public awareness on these issues and will continue to do so to be able to further promote our agenda.
Please, tell me about the children you meet. How are they supported to gain their rights to better health?
- We are doing this every day at the center run by SOS Autism. Parents come with their children, who have no diagnosis, but who display obvious communication, relational, and behavioral problems. At first, we instruct them how to approach their general practitioner and ask for a screening test. We teach them what doctors need to be approached and what to ask from these various stakeholders. Then we carry out specialised evaluation tests. We direct the parent to the psychiatric hospital with a diagnosis. We also instruct them that the diagnosis can be made on an outpatient basis. We tell the parents about their child´s rights and we try to convince them to formalize the child's degree of disability. Then an individual empowerment program is established in the center with the supervision from a specialist outside the country.
Text: Olga Canaly, IM Moldova