The increasing vulnerability of children in Nepal An assessment of children and families affected by HIV/AIDS and the response at family, community, district and national level. November 2002 The increasing vulnerability of children in Nepal An assessment of children and families affected by HIV/AIDS and the response at family, community, district and national level. November 2002 Table of Contents UNICEF Foreword v Assessment Team vii Executive Summary viii List of Acronyms xi I. Purpose, Definition, Objectives, and Approach 1 A. Purpose of the Assessment 1 B. Objectives 1 C. International Programming Principles 2 D. Definition of AIDS-Affected and Other Vulnerable Children in Nepal 3 E. The Assessment Approach 3 II. The Changing Picture of HIV/AIDS in Nepal 5 A. The Changing Picture of Nepals HIV/AIDS Epidemic 5 B. The Growing Burden of Care 9 C. HIV/AIDS and Other Vulnerabilities 10 D. Nepals Response to HIV/AIDS 11 III. Children and Families Affected by HIV/AIDS 17 A. Introduction 17 B. The Special Needs of HIV/AIDS Affected Children and Families 17 C. Other Vulnerable Children in Nepal 20 D. Estimates of HIV/AIDS Affected and Other Vulnerable Children 23 E. Living Arrangements of Children in Nepal 25 F. Law and Policy Provisions 27 G. Legal Provisions for Widows 28 H. Stigma and Discrimination 33 I. Care Practices for Vulnerable Children 34 J. Families affected by HIV/AIDS 36 K. The Climate of Care in Nepal 37 IV. Climate of Care and Support 39 A. National Level 39 B. District Level 40 C. Village Level 43 D. Community Level 45 V. Recommendations 53 A. National Policy and Co-ordination 53 B. Institutional Care 53 C. District Co-ordination and Planning 53 D. In UNICEF/HMG DACAW districts VDCs 54 Endnotes 55 Charts and Tables 57 Chart 1: Orphaned Children who have lost their mother 57 Chart 2: Orphaned Children who have lost their father 58 Chart 3: Orphans who have lost both parents 59 Table 1: Living Arrangements of Children under 16 years Old in Nepals Development Regions and for Selected Study Districts 60 Table 2: Marital Status of People 10 Years Old and Above in Nepals Development Regions 61 Table 3: Key Barriers to Family and Community based care for HIV/AIDS affected children and families from field research for the National Assessment of Families and Children affected by HIV/AIDS 63 Table 4: Findings from the Field Research on Attitudes towards Orphans from Discussion Groups with Women, Community Organisations and Childrens Groups 69 Table 5: Number of widowed, divorced and separated women from the Census 2001 69 Case Studies from Field Research 71 Appendices 75 Appendix 1: District Reports 75 Appendix 2: Bibliography 97 Appendix 3: Methodology 101 Appendix 4: People and Organisations Met 103 UNICEF Foreword This assessment of Children and Families Affected by HIV and AIDS is one of UNICEFs contributions to His Majestys Government of Nepals National Strategic Plan on HIV/ AIDS (2002-2006) and actions to meet its commitments from the UN General Assem- bly Special Sessions on HIV/AIDS (June 2001) on Children (May 2002) and the Mil- lennium Development Goals and targets. UNICEF is committed to support HMG/Nepal in the fight against the spread of HIV/ AIDS and to ensure the care and support of those affected and infected. Based on this assessment, UNICEF will strengthen our work with government and non-governmen- tal partners to implement policy and programme recommendations that have emerged appropriate within the context of Nepals National Strategy. The fight against HIV/AIDS is one of UNICEFs five global priorities under our 2002- 2005 Medium Term Strategic Plan (MTSP). UNICEFs strategy, in line with interna- tional programming principles adopted by all UNAIDS co-sponsors, is to support and strength the capacity of individuals, families and communities to prevent HIV infection, and to protect and care for adults and children infected or affected by the disease. Under the MTSP by 2005 each UNICEF country office has committed itself to conduct an assessment of the impact of HIV/AIDS on families and children and develop a strat- egy for programming in prevention, protection, care, and impact mitigation. To ensure protection, care and support of orphans and children in families made vul- nerable by HIV/AIDS, UNICEF in Nepal is committed to work with partners to: 1. Review the need for policies and legislation; 2. Review and strengthen the adequacy of access to social services (health, nutrition, education, social welfare, and information); 3. Review the equity of treatment of orphans and non-orphans; 4. Review the existence of, and strengthen mechanisms to protect them from vio- lence, abuse and exploitation; 5. Develop ways to strengthen and support family and community capacity for care (vulnerability monitoring, leadership orientation, community facilitation, support for community initiatives, and home based care and support). v Most of UNICEFs country offices in sub-Saharan Africa completed their assessments in 1998 and 1999. In Asia, we are proud that Nepal is the first country to have com- pleted the assessment. Our appreciation is extended to the team of expert consultants who worked on the assessment, led by the internationally renowned Dr Susan Hunter. In addition, the strong and active involvement of the (then) Minister of Health and (then) Minister of Women, Children and Social Welfare, the Acting Director and staff of the National Centre for AIDS & STD Control, the Director of the Central Child Welfare Board, and a host of national and international NGOs was critical in ensuring that this assess- ment would be a major tool for moving ahead to ensure the protection, care and sup- port of children and families affected by HIV and AIDS in Nepal. Ian MacLeod Senior Programme Officer UNICEF Nepal vi Assessment Team The lead consultant for this assessment was Susan Hunter, Ph.D. Dr. Hunter has been working with UNICEF on the development of programmes for families and chil- dren affected by HIV/AIDS since 1989, when she worked with UNICEFs Kampala office to develop the first prototype programmes for the Eastern and Southern African Region. Dr. Hunter was principal author of the first two editions of Children on the Brink (1997 and 2000), and also wrote Reshaping Societies: HIV/AIDS and Social Change, a study of the impact of HIV/AIDS on African societies, in 2000. She has worked for UNICEF, UNAIDS, USAID and a number of international NGOs at head- quarters level and on residential and short-term missions in 24 countries, and has been team leader on assessments of families and children affected by HIV/AIDS in 14 coun- tries. Most recently, she worked with the East Asia and Pacific Regional Office of UNICEF to assist Thailand, Vietnam, Cambodia and Myanmar in developing their national assessments of AIDS-affected children and families. She is a medical anthro- pologist and demographer with substantial publications in HIV/AIDS and health sys- tems management, and is working on a book about AIDS in Africa scheduled for publication in September 2003. Two consultants, Patricia Lim Ah Ken and Sumi Devkota, worked with Dr. Hunter on the study design, implemented all of the district and VDC level field research, and completed the data gathering and collation for the institutional response section of this report. Patricia Lim Ah Ken comes to Nepal from child protection work with UNICEF in Afghanistan. Prior to that, Patricia was instrumental in developing Mo- zambiques national assessment of AIDS-affected children and families, and in work- ing with government ministries to implement the strategic plan developed following the assessment. Sumi Devkota, a Nepali expert in social research, has focussed her most recent work in the HIV/AIDS area. She has extensive experience in HIV/AIDS related training, social research, life skills materials development and production, and has also worked on Safe Motherhood Programmes and prevention research among young people. In UNICEF Nepal, the coordinator and the catalyst for undertaking the assessment was Ian MacLeod, the Senior Programme Officer. Strong support was provided by Samphe Lhalungpa (Education Section Chief), Noriko Izumi (Child Protection Of- ficer), Naresh Gurung (DACAW Programme Chief) and Uddhab Khadka (Planning & Monitoring Unit), along with the Chiefs and staff of the four UNICEF Field Offices. vii Executive Summary The National Centre for AIDS and STI Control estimates that 58,000 Nepalese are living with HIV, and UNICEF/UNAIDS/USAID estimates that 13,000 children have been orphaned by AIDS, 1.5% of Nepals 835,000 orphans. The annual number of deaths from the disease will escalate from 3,000 in 2000 to 6,000 in 2005 according to epidemic projections made before the extent of infection among labour migrants was realized. If the epidemic accelerates more rapidly through the infection of migrant labourers moving regularly between India and within Nepal itself, the proportion of children orphaned and women widowed could grow exponentially. This assessment of Children and Families Affected by HIV and AIDS is one of UNICEFs contributions to His Majestys Government of Nepals National Strategic Plan on HIV/ AIDS (2002-2006) and actions to meet its commitments from the UN General Assembly Special Sessions on HIV/AIDS (June 2001) on Children (May 2002) and the Millennium Development Goals and targets. The overall aim of the national assessment is to provide substance for the development of a national strategy and action plan on children and families affected by HIV/AIDS under the National Strategic Plan 2002-2006. The aim is met through a quantitative and qualitative review of the situation of children affected by HIV/AIDS and the nature of their support mechanisms at family, community, district and national level. In undertaking the assessment, global principles, definitions and experiences from simi- lar work were applied and taken into consideration within the recommendations.