“It is My Dream to Leave This Place” Children with Disabilities in Serbian Institutions Copyright © 2016 Human Rights Watch All rights reserved. Printed in the United States of America ISBN: 978-1-6231-33603 Cover design by Rafael Jimenez Human Rights Watch defends the rights of people worldwide. We scrupulously investigate abuses, expose the facts widely, and pressure those with power to respect rights and secure justice. Human Rights Watch is an independent, international organization that works as part of a vibrant movement to uphold human dignity and advance the cause of human rights for all. Human Rights Watch is an international organization with staff in more than 40 countries, and offices in Amsterdam, Beirut, Berlin, Brussels, Chicago, Geneva, Goma, Johannesburg, London, Los Angeles, Moscow, Nairobi, New York, Paris, San Francisco, Sydney, Tokyo, Toronto, Tunis, Washington DC, and Zurich. For more information, please visit our website: http://www.hrw.org JUNE 2016 ISBN: 978-1-6231-33603 “It is My Dream to Leave This Place” Children with Disabilities in Serbian Institutions Map .................................................................................................................................... I Summary ......................................................................................................................... 1p Life in Institutions .................................................................................................................... 6 Obligations ............................................................................................................................ 10 Way Forward ........................................................................................................................... 12 Methodology ..................................................................................................................... 15 Institutionalization in Serbia ............................................................................................ 18 National Framework and Initiatives ......................................................................................... 18 Small Group Homes ................................................................................................................ 21 Family Outreach Service ......................................................................................................... 24 Illusion of Decline; Increase in Admissions ............................................................................. 25 More Investments in Institutions Instead of Community Care .................................................. 28 Serbia’s International and National Legal Obligation to Ensure the Right of a Child to not be Separated from His or Her Family ............................................................................................ 30 The Path to Institutionalization ........................................................................................ 33 Undue Pressure on and Lack of Information to Parents ............................................................ 33 Lack of Community-Based Services ......................................................................................... 36 Lack of Inclusive Education ..................................................................................................... 41 Poverty and the Broken Foster Care System ............................................................................. 45 Abuse of Children with Disabilities in Institutions ............................................................. 50 Segregation and Seclusion ..................................................................................................... 50 Neglect ................................................................................................................................... 52 Lack of Privacy for Personal Care ............................................................................................. 54 Insufficient Safeguards Against Abusive Use of Restraints and Physical and Psychological Violence ................................................................................................................................. 55 Right to be Free from Violence and Neglect .............................................................................. 56 Involuntary and Potentially Inappropriate Medical Treatment .................................................. 58 Right to education .................................................................................................................. 70 Limited Freedom of Movement ................................................................................................ 74 Denial of Legal Capacity .......................................................................................................... 75 Right to Legal Capacity for Adults with Disabilities .................................................................. 77 Recommendations ............................................................................................................ 80 To the Serbian Government, Including the Ministries of Social Policy, Health, Education, and Finance ................................................................................................................................. 80 To the European Union ........................................................................................................... 85 To Serbia’s International Partners ........................................................................................... 85 Acknowledgments ............................................................................................................ 87 Appendices ...................................................................................................................... 89 Map I HUMAN RIGHTS WATCH | JUNE 2016 Summary If I would touch her little hands or feet, she retracted, like a turtle inside of her shell. For about two or three months we struggled to establish some sort of physical contact. The first time she rested her head on my shoulder was three months after coming to our home. It was the most beautiful thing that happened. —Suzana, foster parent of Marina, a 4-year-old girl with developmental disabilities, who was 10- months-old when she left an institution to live with her foster family Julija, a 4-year-old girl with a disability, was born in Belgrade, Serbia’s capital, in 2012, to proud parents Ivica and Jasmina. However, after the birth, Julija was not brought in to her mother as other children were. Instead, as Julija’s mother Jasmina explained, “The nurses started consoling me by saying: ‘You will have another child. You will have another child, don’t cry.’ Julija was written off immediately.” For the first couple of days, despite repeated inquiries, Jasmina and Ivica were not given any information about their daughter’s health and well-being. Then a doctor told them Julija has a rare genetic condition called Apert Syndrome – which results in vision and hearing loss, difficulty breathing and eating, cognitive delays, and webbed fingers and toes. The doctor and nurses told them that it would be best to leave Julija there in the maternity ward and for her to be placed in an institution for children with disabilities. They did not want to do that. Instead Ivica and Jasmina travelled across Serbia for specialist appointments and surgeries to get Julija the very best treatment possible. However, they were continuously advised by health care professionals that it was best for their daughter to live in an institution: One doctor told us, ‘It will be a torment for you and you don’t know if you will receive anything in return.’ Medical nurses would tell us, ‘This is best for you and for her. It is better for her to be with children that are like her.’ 1 HUMAN RIGHTS WATCH | JUNE 2016 With no community support and services available, especially after a critical head surgery, they made the difficult decision to place their three-month-old baby girl in an institution for children with disabilities in Belgrade, believing they were doing what was best for their child. However, after Julija was placed in the institution, her parents began noticing the deterioration of her well-being and development: We went to visit her and nothing remained of that child who used to smile and cackle. She had a lost look in her eyes, she visibly lost weight, she was sad in a way. I don’t know whether it is possible for a three-month-old child to feel that - a lack of parental love, but… it was as if she had sunken. And shortly thereafter she had an infection and stayed in the hospital, barely making it out alive from pneumonia, and so on…. But it really was a visible change. Not only I as her mother, but my cousin who was with me, she noticed the same. That she was no longer the child she used to be. Julija spent 10 months in the institution between May 2012 and March 2013 with visits home depending on her health condition: We wanted her to be home as much as possible, but sometimes that was just not possible because of her health condition. Doctors and staff at the institution supported us in these efforts because they could see that Julija felt better – and so did we. Jasmina and Ivica explained how doctors and social workers from the institution were the only point of reference during this difficult period and it was the only place they could turn to for help and support. Jasmina and Ivica