The case of a child with Down syndrome that from Maternity Ward was placed directly into an institution

openingdoors1

By Jana Hainsworth, Eurochild Secretary General

A mother from Bulgaria addressed Members of the European Parliament on 10th December to share her experience of the pressure put on parents to abandon children with disabilities into institutions. By bringing this testimony, the Opening Doors for Europe’s Children campaign hopes to illustrate everything that is wrong with a system reliant on institutional care.  Better training for professionals, more guidance and support for families, and banning placement of under 3s in institutions, will ensure no family has to endure a similar trauma of being separated from their infant just because he or she is born with a disability.

Dimitr was a long-awaited baby. Happy and excited to be parents again, Biljana and Hrsto Antonov looked forward to the birth of their baby with anticipation. When the day came however, their world was turned upside down. The baby was diagnosed as having Down syndrome.

The midwives and social workers advised Biljana to place her child in an institution because the doctors there could take better care of him.

Knowing nothing about Down syndrome, and given no information about other options and the support they could receive if they chose to keep him, the family relented, trusting that the professionals would know what was best for Dimitr.

However, institutions deny children the love and affection, so critical to their development. They are characterized by depersonalization, a musicalized-model of care, and rigid routines dictated by professionals rather than the individual needs of the child.

Whilst all institutional care is damaging for children, for infants under three, institutional care can stunt brain development irreversibly. International standards – the UN Convention on the Rights of the Child, the UN Convention on the Rights of People with Disabilities and the UN Guidelines on Alternative Care for Children – clearly state that the priority must be to prevent children’s separation from their biological families through provision of all kinds of family support. Where separation is in the child’s best interest, high quality alternatives must be available such as foster care or small family-like group homes.

Biljana regretted her choice and asked to have her son back but the doctors seemed reluctant to give Dimitr back to his parents. Thankfully their cries for help were heard. The Hope and Homes for Children team in Bulgaria was able to connect the family with the support they needed to be able to take Dimitr back and ensure that he is able to get the care he needs to develop within his family.

Reunited with her son after six long months of agonizing separation, Biljana addressed an audience of MEP’s, European Commission officials, representatives of Member States and European and national experts, to raise awareness that children with disabilities are still being separated from their families and segregated from society on the advice of medical and social care professionals.

Antonov family’s case shows everything that is wrong with a system reliant on institutional care. Care systems across Europe are in urgent need of reform to ensure they support the care needs, choices and autonomy of the individuals and families that care for them.  The aim of the Opening Doors for Europe’s Children campaign is to improve the quality of life of children and young people in, at risk of entering, or leaving institutional care across Europe. We advocate for the development of family- and community-based services to prevent separation of children from their families.

The testimony of the Antonov family, is part of an event organized by the European Expert Group on the Transition from Institutional Care to Community-based Care, which gathered stakeholders representing people with care or support needs including children, people with disabilities, people experiencing mental health problems, families, people experiencing homelessness; as well as service providers, public authorities and intergovernmental organisations.