A/HRC/44/46/Add.2 56. During her visit to Combu Island, the Special Rapporteur received first-hand reports of how the disease in children places a huge burden on families with financial difficulties and poor access to public services. Care of children affected by Hansen’s disease can imply loss of income, since the family member responsible for the child, usually the mother, cannot continue working and yet does not receive any support for her unpaid work as caregiver. Families living in remote areas also reported the difficulties they encounter in accessing health services, including the additional financial burden, since they have to pay the transportation costs to reach the nearest health facility that can ensure proper care for children affected by Hansen’s disease. Indeed, medical care of children affected by Hansen’s disease sometimes requires expertise that is not available in primary health-care services. Although health services and medicines are free of cost, poor families endure extra costs related to childcare and disease management that often result in a reduction in household resources. 57. Hansen’s disease reactions and the effects of medical treatment can be harsh on children. Aggravated by bodily changes, the experience of Hansen’s disease can negatively affect the mental well-being of children and have a negative impact on their school performance and their relationships with their peers. Prolonged exposure to suffering and uncertainty can result in toxic stress, especially in children. The Special Rapporteur heard a few reports of cases in which children affected by Hansen’s disease, and also children of persons affected by Hansen’s disease, had been forcibly suspended from school at the discretion of teachers who were fearful of the disease, rather than at the instigation of the peers of children affected by Hansen’s disease. Such cases constitute a gross violation of articles 28 and 29 of the Convention on the Rights of the Child. 58. According to WHO, the three elements for healthy child development are stable, responsive and nurturing caregiving; safe, supportive environments; and appropriate nutrition. 30 As the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health has explained, children’s rights to health and development are intrinsically linked, and early childhood interventions must focus on development as well as survival. This calls for primary health care and paediatric interventions that go beyond the biomedical model and employ psychoeducational and psychosocial methods that promote emotional health and social development from the very start of life (A/70/213). This is made clear in article 6 of the Convention on the Rights of the Child and article 12 of the International Covenant on Economic, Social and Cultural Rights. 59. Schools and health services are privileged entry points for detecting children affected by Hansen’s disease and their needs, and for responding swiftly with the necessary measures. These include education about the disease at school, reasonable accommodation at educational facilities and social protection for the children’s families, to protect the children’s rights. Persons with disabilities related to Hansen’s disease 60. In 2018 alone, a total of 14,322 new cases of Hansen’s disease were diagnosed in persons with already severe and irreversible physical impairments. As the Minister of Health said during the meeting with the Special Rapporteur, the high number of persons living with impairments and disabilities related to Hansen’s disease calls for an institutional approach that recognizes the burden of the disease in people’s lives beyond the cure of infection. Comprehensive care should encompass self-care techniques to prevent impairments, monitoring nerve damage to prevent further impairments, reconstructive surgery and access to assistive devices. Such an approach is in line with the legal framework regulating health-care delivery in Brazil, but requires both expertise and resources to be implemented and is not yet available to all. 61. Effective access to disability rights as provided for in national legislation and policies was a key concern raised by persons affected by Hansen’s disease during the visit. The Special Rapporteur heard several testimonies about the difficulties these persons experience in accessing social protection benefits granted to persons with disabilities. Access to such benefits is dependent on medical evaluation of physical impairments and 30 See www.who.int/maternal_child_adolescent/topics/child/development/10facts/en/. 13

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