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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”



 


Rapid assessment of Children Affected and Vulnerable

to HIV/AIDS in Maharashtra

 

1. Introduction

India has an estimated 5.1 million people with HIV infection. The response to the AIDS epidemic in India is yet to take a serious look at the issue of children affected by and vulnerable to HIV/AIDS due to their invisibility, and voicelessness. Policy and programming initiatives to address the needs of children affected by and vulnerable to HIV/AIDS have fallen short at all levels.

The latest census indicates that there are 400 million children in India under the age of 18 years (GoI, 2001). The number of orphans in India by all causes is estimated to be 35 million (UNICEF, 2004) and the estimate of destitute children is 44 million (CSA.a). Some of these children might have lost their parent(s) due to AIDS and others might be highly vulnerable to acquiring HIV infection. Media reports quote that more than 1 million children in India under the age of 15 have lost one or both parents to HIV/AIDS (The Guardian, March 23, 2005).

Children below 14 years constitute 4.3 percent of the cumulative AIDS cases reported in India as of July 2005. The National AIDS Control Organisation (NACO) has made some estimates on the number of children infected with HIV in the country in 2003. “Based on the 2001 census information on male-female distribution and HIV estimates in 2003, there will be 17.8 lakhs women with HIV infections. Out of these, only 5696 pregnant women who are HIV positive have availed PPTCT services during the year 2003 in identified institutions. Considering the general fertility rate among women as 103.2 per thousand, there will be 1.84 lakhs pregnant women in HIV infected pool. If the transmission rate of HIV infection from infected mothers to children is taken as 30% in worst case scenario, there will be 55,145 HIV infected children in the country”.   This data is for the year 2003 and not a cumulative figure of the number of HIV infected children in the country since the identification of the infection. Another projection made by the Design Team of the third phase of the National AIDS Control Programme (NACP) estimates 170,698 children infected with HIV in 2006 (Thomas, 2006).

Maharashtra is one of the six high HIV prevalence states in India. Maharashtra, with 35 districts has a population of about 96.7 million, of which 43 percent is urban (GoI, 2001). It has the highest number of slum dwellers in the country with about 31 percent of the urban population living in slums (GoI, 2002). At least 21 percent of India’s estimated 5 to 7 million HIV cases are thought to be in the state of Maharashtra (NACO 2001). Thirteen of Maharashtra’s 35 districts have an HIV prevalence of greater than 1% in pregnant women. The number of reported AIDS cases from Maharashtra is 21,231, which is about 19 percent of the national total. However there are an estimated 750,000 HIV cases in the state (UNICEF, 2004).

A Task Force on Children Affected by and Vulnerable to HIV/AIDS has been constituted at the national level, chaired by the Ministry of Women and Child Development, Government of India, with participation from NACO, UNICEF, USAID, DFID, Futures Group, FHI, SCF, HIV/AIDS Alliance, WHO and others. One of the mandates of the Task Force was to conduct rapid assessments in selected states in India, of which the POLICY Project of Futures Group conducted assessments in two states, Maharashtra and Tamil Nadu. The project was supported by USAID/India.

A rapid assessment of children affected by and vulnerable to HIV/AIDS in Maharashtra was undertaken with the aim of understanding the macro and micro factors influencing their situation and to devise programmatic initiatives based on local situations and needs. The objectives of the assessment were:

1) To assess the vulnerability or resilience of children and their households affected by HIV/AIDS.

2) To describe the situation or problems faced by children and households vulnerable to HIV/AIDS and the services received.

3) To provide guidelines for interventions with children affected and vulnerable to HIV/AIDS

The assessment attempts to examine the local situation and initiatives and examine the larger macro environment as well. The assessment of micro experiences and the local situation is used to provide direction on how programming responses can be framed, scaled and adapted to a larger state level context. The macro context is contextualized by placing HIV/AIDS within the existing child development policies, government child welfare schemes and child rights framework.

2. Methodology

The methodology used for this rapid assessment included desk review of published and ‘grey’ literature on children affected by and vulnerable to HIV/AIDS in Maharashtra and key informants interviews. The desk review led to the identification and further review of these documents.

White paper on adoption with a focus on Maharashtra

White paper on foster care with a focus on Maharashtra

A document prepared for the high court by the Nirmala Niketan School of Social Work on trafficked children

A paper by Ms Kalindi Mazumdar on the condition of government run child welfare institutions in Maharashtra

The Child Development Policy 2002 of the Government of Maharashtra

Several lists of NGOs working across the state on HIV, health and development issues.

A survey on street children in Mumbai conducted by the Don Bosco Foundation

Following the identification and review of these resources and services, a list of key informants were identified. Personal visits followed by interviews or telephonic interviews were conducted with key informants from NGOs (Pathway, Bridges, SOFOSH, CCDT), FBOs (St Catherine’s Home), Government bodies including the Women and Child Development Department, Maharashtra State AIDS Control Society (MSACS), Mumbai District AIDS Control Society (MDACS), Voluntary Coordinating Agency for Adoption (VCA) and Action for the Rights of the Child (ARC). This report is prepared based on the data collected through key informant interviews in these institutions, observations made during field visits and review of the literature.

3. Children Affected by and Vulnerable to HIV/AIDS in Maharastra

The most accepted definition of children affected by and vulnerable to HIV/AIDS in India includes children who are HIV positive; children who are living with a parent, caregiver or other family member who has HIV or AIDS or has died from AIDS related causes (affected); street children, trafficked children, children who are injecting drug users, children in care and protection institutions, children of sex workers, children in conflict with the law, children with a physical or mental disability, children at work (out of home) and children facing gender based risks (vulnerable children) (UNICIF, 2006). Taking all these categories together, there are no official figures or estimates available on the number of children affected by and vulnerable to HIV/AIDS, in any state, or in the whole of India. Coupled with the limited understanding of the magnitude of the problem is the limited understanding of the issues and problems concerning children affected by and vulnerable to HIV/AIDS, and the appropriateness of the limited approaches for intervention with this group. There is very limited information available and documentation done on the situation of children affected by and vulnerable to HIV/AIDS in Maharashtra. This has seriously affected programme planning and implementation in the state.

Recognising this, the Design Team of the NACO for NACP-III attempted to estimate and project the distribution of HIV infected people in different states and nationally from a program development perspective, that contain some information on children infected with HIV (Thomas, 2006). There are various caveats to these estimations and projections that one needs to understand while interpreting the results. They include:

· The estimations and projections are based on statistical models that are tried and tested. The epidemic curves were built using EPP, 2005 and the prevalence data were fed into SPECTRUM that produced the projections.

· The projection is based on sentinel surveillance data and is subjected to the validity of the data from the states. The projections would change with the quality of data input.

· Various assumptions are taken into consideration for estimations and projections. Default values are used when data is not available in the Indian context.

The following table shows some of the estimates and projections for Maharashtra.

Projections on HIV Epidemic in Maharashtra

Years 2000 2001 2002 2003 2004 2005
HIV infected* 1.22 1.22 1.22 1.2 1.17 1.14
AIDS cases* 100830 109130 115340 119690 121670 121760
Infected children** 51227 53471 54604 55066 54351 52910
AIDS symptomatic Children ** 11190 11560 11750 11980 11920 11770

Years 2006 2007 2008 2009 2010 2011
HIV infected* 1.12 1.09 1.06 1.05 1.04 1.03
AIDS cases* 120240 117520 114090 110220 106530 103290
Infected children** 50886 48422 45727 43010 40392 37906
AIDS symptomatic Children ** 11520 11130 10680 10210 9720 9220

*= all ages in million; **= 0-14 years

The estimate for children infected by HIV in 2005 is about 52,910, which is about 5 percent of the total infection in the state. The trend in HIV infection among children shows that it increased from 51,227 in 2000 to 54,351 in 2004 and thereafter shows a decreasing trend. The reason for the decreasing trend is due to the possible deaths due to AIDS and the reduction in HIV transmission from the mother to child. The estimated number of children showing symptoms of AIDS is seen to have reached a peak of 11,980 in 2003.

It should be noted that the quality of sentinel surveillance data from the states has increased in the last rounds and is expected to increase in the coming years. On the other hand, prevention of mother to child transmission could also be reduced in the coming years with better service delivery. Hence these figures might change if the projections are carried out at a later period. Dr. Karnataki, Joint Director at MSACS guestimates the number of HIV positive children in the state as between 6,000-7000, which is much lower than the above estimate.

The Multiple Indicators Cluster Survey, 2000 is another source that has data related to estimates of the number of single and double orphans by all causes. The data from the survey of selected households in Maharashtra shows that one out of 1,000 children has lost both parents and 45 out of 1,000 children have only one parent alive (DWCD, 2000). Maharashtra reports a higher number of single orphans than the national figure

3.1 Vulnerability of Children and Households Affected with HIV/AIDS

Children in households affected by HIV face the impact of a rapid depletion of resources including financial, parental care and psychosocial support. They often have to assume responsibilities for which they are too young. In addition, if the children live in resource poor settings, they are subject to multiple risks and vulnerabilities. What is the extent of these vulnerabilities? In what aspects of the child’s life are these vulnerabilities most acute– education, care and support, health, economic condition? There is little empirical research on the impact of internal and external vulnerabilities on children in India. Equally important is a documentation of the resilience of households affected by HIV. This is essential for the identification of coping mechanisms in situations of low access to resources.

A study conducted in Sangli district, Maharashtra (Varma et al, 2002) provides some quantitative evidence of the impact of HIV on both children and households. This section describes the vulnerability of children and households affected by HIV/AIDS. It is based on information collected through interviews conducted during this rapid assessment as well as a  review of available literature.

HIV affected children and poverty

The slide into poverty of households affected by HIV/AIDS and its impact on children occurs in several ways. The Sangli study compares the socio-economic and health status of families which have experienced the death of one member due to HIV/AIDS with families who have experienced no death, and also with families which have experienced a death due to a non HIV related cause. The study found that families which lost a member due to HIV/AIDS were significantly more likely to slide into poverty than families who lost a member due to non-HIV causes. The main reason for this is that HIV strikes an individual in his/her productive years and hence the economic impact of the loss is greater. HIV also impact the life of children, thereby pushing children into the labour force as illustrated in the two cases below.

“X…. was 16 years old when both his parents died due to AIDS. He had to start working to earn an income for his younger siblings” (SOFOSH interview, 2005).

“M…. was 12 yrs old when he was sent to live with relatives after both his parents died due to HIV. His uncle immediately sent him to a garage to work and earn some money” (ARC interview, 2005).

HIV affected children and sexual abuse

Children in vulnerable situations are at greater risk of being sexually abused.. The case below illustrates how the girl child is vulnerable and how difficult it is to seek redress from the police system. It also illustrates the determination of a young HIV positive mother to fight for justice against the molestation of her daughter, despite the discrimination she faced.

“J… was widowed at the age of 26 and with 2 young daughters. I was found to be HIV positive. I live in a slum in Pune. My mother-in-law threw me out of the house after my husband died. I was reinstated back into my home by some conscious community members. I started working as a labourer at a nearby construction site as I had no other income source. I used to leave my young daughters who were 3 years and 5 years with my mother-in-law, who was unwilling to look after them.

One evening when I returned home, I found my five year old daughter was very quiet. After repeated probes, she said that she had a burning sensation in her urinary area. I asked her what happened and she told that a 15 year old boy had taken her to the public toilet near their house and molested her.

I immediately went to the police station to lodge a complaint but the boy’s parents were already there asking the police not to listen to me, as ‘she is a bad woman with a bad disease’. It took me 3 days to lodge a police complaint and that too with the assistance of an NGO which works in the slum.

My daughter was admitted to a public hospital and there she was tested for HIV. She too is positive. In the meantime, I went ahead and filed a case in the Juvenile Court against the boy who molested my daughter”. (Kapadia-Kundu, 2004)

The above case illustrates that HIV affected children are as vulnerable to sexual abuse as other children. However, they are even more vulnerable when seeking access to protection, due to the HIV related discrimination they face.

HIV affected children as care givers

Children in households affected by HIV also have to perform the role of care givers, especially when other support systems are not available for sustained periods of time. D’Cruz (2004) has conducted a study on care giving at the family level and instances of child caregivers in two households were quoted in her work. In the first instance, an eight year old HIV positive child looked after his father with AIDS. The father-son pair had no other family support and had to switch roles of care giving and care receiving. This was needed even when the child was unwell as there was no one to take care of his unhealthy father. The second case of child caregivers mentioned by D’Cruz involves two children, 12 and 16 years of age, who cared for their widowed mother with AIDS. Here too, in the absence of family and other support systems, the boys had the primary responsibility of caring for their mother.

HIV affected children and their health

Dr Karnataki, Joint Director at MSACS stated that about 66 children were on ART across the state as of January 2005. The national government had declared on December 1, 2003 that all HIV positive children below 14 years will receive free ART. If this is compared with the estimated number of children who require ART, which is 1177, (10 % of 11770 AIDS symptomatic children in 2005), it shows the poor coverage of ART treatment in Maharashtra.

Prevention of parent-to-child transmission (PPTCT) is an important programme to prevent perinatal transmission of the virus. Efforts are underway in the public and private sectors in the state, but the reach of this programme is very limited. While coverage data is not available from the private sector, about 850 mother-child pairs were provided with ART prophylaxis through the public sector. A study in Mumbai found that the HIV prevalence in pregnant women attending a semi-private clinic was the same as women attending a public hospital, indicating that HIV prevalence cuts across socio-economic barriers (Shah et al,).

The Sangli study also found that children living in families which lost a member to AIDS had more adverse health outcomes (Varma et al, 2002). Children from AIDS affected families were more prone to morbidity and had lower access to care and treatment than children from non-HIV affected families. The study strongly advocates the need for developing a comprehensive strategy for the wellbeing of children affected with HIV/AIDS.

The extent and level of vulnerabilities in children in Maharashtra illustrated above should be validated and reassessed through a systematic study. There is also a further need for research to identify the coping mechanisms for children in HIV affected households and document examples of resilience in the face of adversity.

4. Care and Support Initiatives in Maharastra for Children Affected with HIV/AIDS

This section discusses some of the care and support initiatives in Maharashtra for children affected by and vulnerable to HIV/AIDS. There are two major sources of HIV funding for children in Maharashtra. The first is under the IMPACT project of Family Health International supported by USAID, and the other is through Catholic Relief Services (CRS). Information was provided by the IMPACT project on the number of projects and the beneficiaries, as given in the table below.

Projects on Children affected by and vulnerable to HIV/AIDS under USAID/IMPACT/FHI

Project Title Implementing partner Place Beneficiaries
Strengthening community support for vulnerable children and mothers CCDT Mumbai 300 children +

7000 community members

Dancing Feet CCDT/SDIPA Mumbai 800 children +

4000 community members

Roshini- Prevention and care and support project for women in prostitution CCDT Kamathipura,  Mumbai 30 children +

1200 PLHA +

500 community members

Reducing the vulnerability to HIV/AIDS of the children of sex workers Prerana Mumabi and Navi Mumbai 1500 children +

50 PLHA +

200 families and care givers

HIV/AIDS intervention among substance-using children SUPPORT Mumbai 1500 substance using children

Within the short period of this rapid assessment, an exhaustive list of projects on children affected by and vulnerable to HIV/AIDS in the state could not be prepared. However, some more interventions are mentioned in the discussion on the models of care and support as given below.

Models of Care and Support

The models of care available in Maharashtra for HIV affected children ranged from community based support and rehabilitation to foster care, to institutional arrangements run by faith based organisations (FBO), and  to temporary shelters run by NGOs. The discussion is also classified based on the approach of the intervention

4.1 Community-Based Approaches for Children Affected by HIV/AIDS

Most of the community-based initiatives for children affected by HIV/AIDS were by NGOs. The government institutions and programmes are yet to respond in a holistic manner to the needs of children affected by HIV/AIDS in Maharashtra. The assessment of the community based approach is based on interviews with key personnel at CCDT, Pathway and Vanchit Vikas.

Committed Communities Development Trust (CCDT)

The CCDT approach is a community-based, family-supported rehabilitation programme with the goal of equipping the family and community with the necessary health, nutrition and psycho-social skills for caring for an HIV affected child. In addition, it also focuses on vulnerable children through its community based programmes. The intervention covers almost the entire Mumbai region, New Mumbai and the outskirts of Mumbai. They also collaborate with other NGOs in order to avoid duplication of services.

Through their child-centered programmes they are reaching out to 3301 children -  orphans, runaways from home, juvenile first-offenders, pavement dwellers and those in red light areas, are all included in the programme. Through "Dancing Feet" alone the outreach is to over 800 children’. CCDT's project-CHILD (Children of HIV Positive Individuals Living in Dignity) is a comprehensive HIV/AIDS programme addressing issues of care, support and prevention using a family-based approach. (http://www.indianngos.com/interviews/allinterviews/saraliziadmello.htm)

Pathway Project

The Pathway project provides community based services to PLHA in Pune. They work in low-income communities and cover a population of about 220,000. The type of services provided through the Pathway Project includes voluntary counseling and testing, family care/self care, palliative, prophylactic and curative treatment, mobile clinic services, drop-in-centres and nutritional support.

According to Jasmine Gogia, most of the children affected by HIV/AIDS and those infected by HIV are living with their families. Those orphaned by AIDS too usually stayed with their relatives, an example being a 12 year old HIV positive girl orphaned due to AIDS who was being well looked after by her maternal aunt and uncle. However it is not possible to discover the number orphaned due to AIDS in their project area, as the organisations had never considered them a separate category.

Dr Gogia is convinced that community-based approaches need to be promoted while working with children affected by and infected with HIV/AIDS. She also discussed the problems related to offering an ‘HIV only programme’ to people as, for example, providing nutritional supplements only to PLHA alienates the rest of the community since they feel they are not  also receiving special services. She strongly stated that programmes for children affected by and infected with HIV/AIDS should not become yet another vertical programme within the HIV/AIDS programme. Instead these initiatives should build on existing programmes. For example the Pathway model works best when child centered interventions are integrated with the on-going programme.

She stated, however, that they have not looked specifically at the issue of affected and vulnerable children. Pathway is an example of how programmatic inputs for children can be ‘piggy backed’ onto existing programmes, which is true not just with HIV/AIDS programmes but with many other health and development initiatives.

Bridges Project

The goal of the Bridges Project is to ensure access to community based care and support services for children infected and affected by HIV/AIDS. The project reaches out to about 62,000 low income population groups in Pune. The project includes a core set of services required for children – life skills, psycho-social care, legal support, succession planning, nutritional support along with palliative, prophylactic and curative treatment, medical clinic services, support groups for care givers, community sensitization, referral services, capacity building and training services and mobilization of faith based organizations

Discussions with Mr. Vilas Chapekar, Director, Vanchit Vikas the local NGO implementing Bridges, provided interesting insights on how to initiate community based child centered programming for children affected by and infected with HIV. Firstly, he stated that it is not possible to approach a community with a programme only for HIV affected and infected children. In fact, such an effort would lead to further stigmatization and discrimination. Even though their programme was for children affected by HIV/AIDS, they started with child development activities for ALL the children in the slums. Through the activities for children in the slums they could develop rapport and trust with the community. This crucial first step helped them in the identification of children affected with HIV/AIDS.

He also felt that programmes only for children are limited and said that the best results were in communities where the Pathway and Bridges projects are overlapping.

Sarva Seva Sangh (SSS)

The SSS, Pune, provides yet another model on how children affected with HIV are cared for. SSS, a faith based organization (FBO), has placed about 52 HIV affected children in various boarding schools in the city. All the expenses of the children are met by the organisation. Fr. Felix, the Director of SSS, said that the background of the children is not disclosed and the children attend school along with other children.

Bel-Air Hospital Community Care Centre

The Bel-Air Hospital has a 250 bed facility on a 44 acre campus, one of the biggest community care centres in India for PLHA. The community care centre at Panchagani has a holistic approach towards the HIV/AIDS affected rural poor of Maharashtra. The centre has been admitting people living with AIDS since 1995 and has seen a steady rise in the number. They were 149 admissions in the community care centre in 2000, of whom 43 have died. They also cater to the needs of the children, both living with the virus as well as those whose parent/parents are infected.

The community care centre also works towards strengthening the coping mechanisms of women and children affected by AIDS through the provision of counseling and psychological support to them and their family members. It provides vocational training such as tailoring to women. Further, HIV positive people are encouraged to adopt a lifestyle that includes a nutritious diet, yoga, and regular exercises. These skills are imparted to the family members so that there is more participation in the care of HIV infected children and women.

The centre also networks with the different agencies working in the area of community development and mother and child health to improve the health of the children and families affected by HIV/AIDS.

Community-Based Approaches: Issues, Concerns and Lessons Learned

Community based approaches, as experience and experts suggests, are in the best interest of the child. However the assessment suggests that programming inputs regarding effective implementation of these approaches are still at an early stage of formulation. The efforts so far indicate that almost all the community based initiatives for affected children are geographically limited to Mumbai and Pune. These initiatives, however, provide direction on how some of the efforts can be replicated in other parts of the state, thereby ensuring wider access and reach.

Community-based interventions for children affected by HIV/AIDS need to be ‘added on’ to existing community health and development programmes. As the Bridges experience suggests, the additive effect of the intervention is much greater if it is integrated with an ongoing child development programme. The potential of “adding on” the OVC component to existing community based programmes is illustrated below.

There are several NGOs currently involved in working with orphans due to AIDS and children affected by HIV/AIDS. Some of them do not label their efforts as working with children vulnerable to and affected by HIV/AIDS. These efforts can be labeled as ‘invisible initiatives’. The following case study illustrates the above assertion:

 “Invisible Community-Based Efforts”

The India Sponsorship project (ISP) and the Institute of Health Management, Pachod (IHMP) are NGOs working in slum communities in Pune. Both the NGOs do not have a public identity of working with children affected with HIV/AIDS. During the course of this assessment, the consultant met with Audrey Fererra of ISP as Audrey is also the founder member of Actions for the Rights of the Child, a network of about 25 NGOs in Pune working on the issue of child rights.

Initially, Audrey said that ISP did not work in the area of HIV affected children and IHMP had also really not done much work in this area. However during the discussion, Audrey mentioned the case of a 12 year old boy from one of the slums where ISP worked, who lost both his parents to AIDS. The boy is now living with relatives who are not treating him well and they have put him to work on a truck. Also the relatives were interested in usurping the boy’s property-a small one room tenement. When I asked Audrey where the boy’s relatives live, she replied “Mundhwa”. IHMP works in the Mundhwa slums and I assured her that we would work with the boy’s relatives to make them understand the issues related to the boy. More importantly, IHMP contacted the health and development committee of that slum and they undertook the responsibility of convincing the relatives to treat the child well and of monitoring the welfare of the child.

This case provides a good example of the role that NGOs and CBOs could play in providing ongoing monitoring and protection of children in the community. Even though orphans are best placed with their extended family, there is a concomitant need to ensure ongoing monitoring of the safety, care and welfare of the child within the extended family.

The other issue which the case illustrates is the potential of ‘orienting’ and building capacity in existing NGOs and CBOs to identify, support, monitor and refer HIV affected children. There are many grassroots NGOs in Maharashtra. For instance, there is a list of 71 NGOs working in the field of HIV/AIDS in Mumbai alone. A district-wise list of these NGOs is also available. The list will be longer if NGOs working in other areas of health and development in the State are added. These NGOs can be oriented on the rehabilitation options for the child – in which the community should be the preferred option and institutionalization should be considered only as a last resort.

For NGOs and CBOs not working in the area of child welfare, there is a misconception that institutionalization is the logical next step for an orphaned child and is in its best interest. Often parents with HIV have the same misconception and that is what they want for their children after their death. It is important that an information package on the children affected  by and vulnerable to HIV/AIDS should be prepared and made available to government agencies, NGOs and CBOs. This package should include means of identification of the affected children, options for rehabilitation, interventions and monitoring strategies to ensure safeguards against exploitation of the child.

Almost all the policy makers interviewed during the assessment felt that when it comes to dealing with children affected by and vulnerable to HIV/AIDS, the interventions go well beyond the scope of the Health Ministry or the MSACS. The Ministry of WCD has to take a lead in this area in close coordination with the Health Ministry and MSACS.

Unfortunately there is limited information available on alternatives to institutionalization. Most NGOs, CBOs and even government officials are stuck in the paradigm which deems institutionalization of orphans as the best option. Community-based alternatives, foster care and adoption do not feature in their set of options. Hence an information package on alternatives to institutionalization with district wise details on adoption, foster care and community based initiatives should be prepared.

Interventions for HIV affected children OR for ALL children? Another critical issue for community-based interventions is the question of how holistic versus how specific should they be? Community-based approaches are difficult to implement in terms of community acceptance when they target specific households or individuals within the community.

The most appropriate approach should be to include all children of a defined age group for some activities and, in addition, provide specific services to children affected by HIV/AIDS. This strategy seems to have worked well in the Bridges project in Pune, where they started out with activities for all children in the slum and through that process identified and targeted affected children. The project identified 523 HIV/AIDS affected children from a population of 62,000, which works out to an average of 8 children affected by HIV per 1000 population in the low income communities (Bridges Project Summary, 2005). Since this is an estimate in a high prevalence area of Maharashtra, Pune city, the number of HIV affected children per 1000 population would be lower in low prevalence areas.

Coordination for child-centered community-based services. India has about 5.3 million HIV/AIDS cases in a population of 1.2 billion. This illustrates that the catchment area of children affected by HIV/AIDS will be spread across many villages and towns. In terms of Maharashtra, this implies that the state has to be ready to address the issue of HIV affected children in at least high prevalence districts initially and in all districts eventually. Clearly, the epidemic in Maharashtra has spread beyond Mumbai, Pune and Sangli. The question arises of how to reach and provide services to all children?

The CCDT model provides us with direction of what a nodal coordinating agency for children affected by and vulnerable to HIV/AIDS can do. The most important element of CCDT’s work is its philosophy that the best place for a child is to be within a family and in a community setting. It also recognizes the fact that it is not possible for all children to be rehabilitated within the community and so alternate models of care are needed. It covers a vast geographical area which is possible because CCDT networks with other NGOs and CBOs. In addition to the NGOs and CBOs , anganwadi workers can provide care and support as well as nutritional supplements to the children.

The provision of holistic community based services for children affected by and vulnerable to HIV/AIDS also requires a broad multi-sectoral approach which brings together many different service providers both within the government and NGO sectors. These services should include health, education, psycho-social care, child care, child protection etc,. and would have to follow a model which provides a primary level of services at the community level, in conjunction with strong referral linkages for specialized services. A nodal coordinating agency at a city/district level is essential to facilitate the implementation of the community based model of care for children affected by and vulnerable to HIV/AIDS.

 Figure 1 illustrates how a nodal organization can coordinate services for HIV/AIDS affected and vulnerable children at a city/district level. This task could be given to an experienced child development focused NGO or community care centre, or to the District Positive Peoples Network or the District HIV/AIDS Cell. As far as possible, a new nodal organization should not be created. Instead local assessments should lead to the identification of an existing nodal organization in the city/district. This nodal agency would maintain linkages with ICDS, Health and WCD at the city/district. Another tier in services for affected and vulnerable children are NGOs who can provide support services, work at the community level and coordinate several CBOs. The third tier is at the community level where linkages between various services – ICDS, ANM need to be established.

Figure 1: Structure of a Nodal Agency for Coordinating Community-based Services for Vulnerable and Affected Children

4.2 Residential Shelters/Foster Homes/ Institutions for HIV Affected Children

In terms of options for care and rehabilitation, institutionalization is considered to be the last resort. However it becomes necessary for those children who are abandoned and do not have options for community-based rehabilitation. This is more true in the case of children orphaned by AIDS. The assessment identified 9 institutional/group foster care homes in Maharashtra which specifically caters to the needs of HIV positive children or children with parents infected with AIDS, as listed in Table 2. These facilities are operated/managed by FBOs and NGOs. Some of these facilities, such as, Purnata Bhavan, Ashray and Sahara Allhad have been established exclusively to address the needs of PLHA and children affected by and infected with HIV/AIDS, while others such as St Catherine’s home, Manavya, Ma Niketan, Bhagini Nivedita Prathisthan were already working with orphans, destitute or vulnerable children and have opened their facilities for children affected by HIV/AIDS.

Table 2: Institutions/ Foster Homes for HIV Affected Children

Institutions/Foster Homes          Organisation Population served Location
Ashray CCDT Temporary shelter for HIV affected children (0-8 yrs) Mumbai
Crisis Intervention Centre CCDT Residential care and psycho-social support for HIV+ women and children (8-12 yrs) Mumbai
St Catherine’s Home Daughters of the Cross of Liege (FC) HIV+ children, unwed mothers, Mumbai
Purnata Bhavan Oasis Group foster care- HIV+ women and children Igatpuri, Nashik
Manavya Manavya HIV positive children, HIV+ sex workers, Pune
Helix Home Helix AIDS Foundation HIV+ women and children Pune
Ma Niketan Helpers of Mary (Shraddha Vihar) Boys and Girls Thane
Bhagini Nivedita Seva Prathistan Bhagini Nivedita Seva Prathistan HIV+ girls Sangli
Sahara Allhad Sahara Allhad Residential care center for PLHA and children Pune

Residential care center for PLHA and children

Pune

There are two types of child-care institutions in Maharashtra – statutory institutions and non-statutory institutions. The statutory institutions are run under the Juvenile Justice Act and the non-statutory institutions provide residential care such as orphanages etc. The next section focuses primarily on non-statutory institutions.

St Catherine’s Home, Andheri, Mumbai

St Catherine’s home is an FBO established in 1966 to serve the needs of all categories of vulnerable children- orphans, HIV affected and infected children, trafficked children and street children. It was one of the first institutions in India that accepted care of an HIV+ child way back in 1996. It now has about 250 orphans, runs a school and has a group foster home for trafficked girls.

St Catherine’s Home currently lodges 51 HIV positive children in two group foster home settings. Each ‘home’ has a mother and five support staff. The ‘medicine’ offered by Sr Shanti and her team includes love and care, emotional support, good nutrition, good hygiene practices and early detection and treatment of opportunistic infections. The following specific practices have generally  kept most of the HIV positive children healthy:

A high protein diet

Child friendly food– children decide what they want to eat

Higher frequency of feeding– lots of snacks between meals, as per meal intake is low

Daily supplements of calcium and Vitamin B complex

De-worming every 3 months

Daily provision of fruits and green leafy vegetables

Pediatric dose of cotrimoxazole (Septran) as a prophylactic

Maintenance of high level of personal and food hygiene

The experience of St Catherine’s Home suggests that use of cotrimoxazole as a prophylactic has considerably reduced skin infection and other opportunistic infections among children. The Home systematically maintains the medical history of the children and the data indicate that while 90 percent of children had opportunistic infections when they arrived at the Home, the proportion reduced considerably after the use of cotrimoxazole prophylactic.

The St Catherine’s Home: A Ray of Hope……….

A visit to St Catherine’s Home dispelled the misconceptions that HIV positive orphans are unwell and weak. It shows that an appropriate mix of inputs and perspective can give back children a better life with the virus. The right mix involves the provision of a supportive and caring environment, good nutrition and effective health care services.

The only one way to replicate the work of St. Catherine’s Home to other sites and communities, is to ‘bring interested people here and let them see for themselves what is possible’, said Sr. Santhi. St Catherine’s home offers a best practices model that can be effectively used for capacity building. Following the old adage ‘seeing is believing’, a visit to the St. Catherine’s Home could enthuse many providers into believing that a lot more is possible for the care of HIV positive children than is currently considered as feasible.

The St Catherine’s home experience also highlighted the role of faith based organizations, especially in the care of HIV positive orphans who have nowhere to go.

Bhagini Nivedita Seva Pratishtan, Sangli

The Bhagini Nivedita Seva Prathishtan runs a home for HIV positive girls/children, which has other projects and services for destitute women and children. It is a registered orphanage and is a statutory institution recognized by the Department of Women and Child Development, Government of Maharashtra under the Juvenile Justice Act. Court committed children, who are detected to be HIV positive are sent to Bhagini Nivedita Pratishtan from all over the state. In 2002, the home had 68 girls of whom 28 were HIV infected. Separate accommodation is provided for HIV positive children/girls from other destitutes. They are being provided with a nutritious diet as well as nutritional supplements that have helped them in regaining body weight and reducing infection levels.

The institution receives a grant of Rs 500 per month per child from the Government (CSA, 2002). However the institution estimates that it requires about Rs. 1500 a month for children living with the virus. Since the government provides them with only with Rs 500, the institution has to raise the remaining money from other sources (CSA, 2002).

Ashray and Crisis Intervention Centre: CCDT

In addition to its community based interventions, CCDT also runs a temporary shelter, ‘Ashray’ for affected/infected children in the age group 0-8 years. Ashray provides pre-school education for younger children. Psychological support, nutrition and medical care of children are also met through this project. It also plans for long-term rehabilitation when children exceed 8 years of age  by placing them in boarding schools, rehabilitating them in the extended family, arranging foster care or placing them for adoption.

The aim of CCDT’s Crisis Intervention Centre is to strengthen the mother-child bond in the period of crisis by providing residential care and support for HIV positive women and their children (8-12 years). The Centre provides psycho-social and medical support along with exploration of viable economic alternatives for the women.

Both Ashray and the Crisis Intervention Centre provide temporary residential shelters for approximately 62 children. CCDT has linkages with adoption agencies for children who are from HIV affected families, but not seropositive. They have placed 15 such children through adoption.

Purnata Bhavan, Igatpuri

The Purnata Bhavan is a residential-cum-rehabilitation centre for the care of the women and children infected and affected by HIV/AIDS. Purnata Bhavan, meaning ‘house of wholeness’ is a project supported by a faith based initiative called Oasis. Oasis has about 8 projects in Mumbai that work primarily with children at risk, sex workers and PLHA, and provide services in the field of education, community health and development, vocational training and advocacy on fair trade practices and computer education.

Set up in 1998 as a group foster home, it provides health care, vocational training, life skills and education, leading to a holistic development in an extended family environment. The home is run by ‘parents’ who have been living at Purnata Bhavan for some years. Some of the women living at the Bhavan are women who have been rescued from sex work. While the children are admitted to schools, women are provided with vocational training.

Six HIV positive women and 39 affected and infected children are been provided services in Purnata Bhavan in 2005-06. 36 children between 4-19 years attend school and 9 of them are on ART. The project also makes conscious efforts to rehabilitate its the inmates. During 2004-05 a 12 year old boy was moved to another residential home, a 3 year old girl was reunited with her family after a year, and a woman and a mother and child were reintegrated into their respective families in Mumbai. Advocacy is another activity of the project that helps in obtaining donations and subsidized consumable items from the local areas, and in  getting HIV positive children admitted to the local school.

Ma Niketan, Shraddha Vihar, Thane

Ma Niketan children’s village is operated by the Helpers of Mary (Shraddha Vihar) for destitute, abandoned and needy girls. It has about 60 HIV positive boys and girls at the village that offers a  group foster home setting.

Manavya, Pune

Manavya was started by noted social worker Vijaya Lawate who had spent more than 30 years working for the welfare of CSWs in Pune’s red light area of Budhwar Peth. The shelter was started for CSWs who are HIV positive and their children. Currently there are about 39 children of whom 17 are HIV positive and seven women of whom six are HIV positive. In addition, Manavya provides mobile health services in the Budhwar Peth area.

Sahara Allhad, Pune

A residential care center which can accommodate 14 PLHA is functional at Wagholi, Pune. The center has recreation facilities as well as a crčche for children. Services include counseling, home visits and involving families of orphans and vulnerable children in the rehabilitation programme. The center started in January 2002.

Institution Based Approaches: Issues, Concerns and Lessons Learned

The key lessons that can be drawn from the case studies of an institution based approach are:

· It is primarily FBOs, with a history of providing institutional based care to the poor and vulnerable, that are providing institutional care for children affected by HIV/AIDS. Most of these FBOs are operating on meagre funds.

· There are several models of institutional/foster care for children affected by HIV/AIDS. They need to be evaluated and a common set of guidelines needs to be developed.

· Although, community-based approaches should be promoted, institutional options need to be there for children who have absolutely nowhere to go.

· The FBO sector in Maharashtra, for example St Catherine’s Home and Bel-Air Hospital, successfully demonstrates how to care for HIV affected children. Their experience needs to be documented to enable a transfer of practices to community-based approaches.

· A state-wide data base is required of children affected by and vulnerable to HIV/AIDS and also information about the unit cost of services. This will provide the necessary information for planning interventions for these children.

· Increased frequency of feeding– the issue is not only the provision of additional nutritional supplements like milk and eggs but also that of ensuring that multiple feeds are provided. What St. Catherine’s Home has done is a very common strategy used to combat malnutrition in children. This also implies that nutrition education should be a major component of home based/ community based care programmes

· A good approach for children infected with HIV/AIDS is to adopt the approach used to combat malnutrition in children under three years. This strategy includes a balanced diet, frequency of feeds, personal hygiene, safe water and early detection and management of infections. This is what St. Catherine’s Home has achieved.

· The psycho-social care provided by the team at St. Catherine’s Home can also be documented to understand the psycho-social and emotional needs of children infected with HIV.

4.3 Adoption

It is estimated that about one million children have lost either one or both parents to HIV/AIDS in India (The Guardian, May 2005). As mentioned earlier, there are no estimates specifically for Maharashtra on the number of children orphaned. However the number of adoptions is very low in proportion to the number of orphans. The estimates for adoption in India are about 5,000 per year (CSA 2004.a). This includes adoptions both within and outside the country. The reasons for such low levels of adoption are attributed to several factors, such as wanting a baby of a particular gender, wanting a “fair” baby, demand for younger babies etc. (Bharat, 1994). There are very few research studies on adoption. A study indicates that the main reason why adoption levels remain so low is that there is a mismatch between adoptive parent’s expectations and the characteristics of available children (Bharat, 1994).

4.3. 1. Laws/Judgements related to Adoption

The White Paper on Adoption (CSA, 2004) notes that adoption laws are more ‘parent centered’, rather than ‘child centered’. This section outlines some of the laws related to adoption.

Guardians and Wards Act, 1890

In India people belonging to the Muslim, Parsi and Christian communities cannot ‘legally’ adopt as their personal laws do not sanction adoption. Alternatively they can accept a child as their ‘ward’ and are under no legal compulsions to give the child the family name and/or property. People following the Muslim, Christian or Parsi faiths are considered ‘guardians’ of the child until the child becomes an adult.

Hindu Adoptions and Maintenance Act (HAMA), 1956

This Act is applicable to Hindus all over India and also extends to Buddhists, Jains and Sikhs. The Act does not permit the adoption of a child of the same sex if the adoptive parents either have a biological child or another adoptive child. Single women and widows can adopt children under the Act. Some of the drawbacks related to HAMA, as discussed in the White Paper on Adoption (CSA, 2004) include:

In the case of abandoned children, the law requires that the father should relinquish the child. However for illegitimate children, the father cannot be traced and hence this poses an obstacle to adoption.

The act does not protect the child from any forms of discrimination by the adoptive parents

Supreme Court Judgment, 1984

The Supreme Court judgment mandates that every child available for adoption should be certified as destitute and legally available for adoption by the Juvenile Justice Board. The Supreme Court judgment also states that the children should not be indiscriminately transferred from one state to another.

Juvenile Justice Act, 1986 and 2000

This act provides directives for setting up institutional arrangements for the protection of destitute children. The Act mandates that different types of children’s homes- juvenile homes, special homes, observation homes, after-care homes, fit persons institutions- should be set up for different categories of children.

The Act was amended in 2000 to give persons of any religion the right to adopt. The Act also recognizes the role of non-institutional services for the rehabilitation of children such as adoption, foster care and sponsorship. The Act was amended for the ’best interests’ of the child.

 

4.3.2. Adoption Services at National, State and City levels in India

The Central Adoption Resource Agency (CARA)

CARA is an autonomous body set up under the Ministry of Social Justice and Empowerment in 1990 following the 1984 Supreme Court order. This agency was established to ensure the application of a common framework for adoption procedures. This framework includes a set of guidelines to be followed for adoption within the country and for inter-country adoption.

Voluntary Coordinating Agencies (VCA)

The VCAs were established at the state level under CARA to promote adoption and are recognized by the state governments. The VCA is modeled on the Pune experience in the 1980’s where child welfare agencies in Pune came together to form a coordinating agency for adoption.

Apart from a state level VCA, large cities can have separate VCAs. The state of Maharashtra has 4 VCAs located at Mumbai, Nagpur, Pune and Pune (rural). There are a total of 13 VCAs in India and they are networked through CARA. The Pune VCA was visited as part of the Maharashtra assessment, and the chairperson, Ms Nishita Shah, was interviewed. The Pune VCA has 10 adoption agencies as their members.

The objectives of the Pune VCA are:

To coordinate with agencies working in the field of child or family welfare.

To promote adoption/guardianship of destitute children among Indians

To undertake publicity for promotion of adoption

To guide prospective adoptive parents

To undertake educational seminars and training programmes

In 2004-2005 the Pune VCA facilitated the adoption of 442 children, of whom 259 were girls and 183 were boys. The annual report of Pune VCA (2003-4) shows that in the past 10 years more that 50 percent of children adopted in Pune have been girl children. Their report also shows that more than 70 percent of the adoptions (ranging from 67 to 80 percent) have occurred within India. The Pune VCA organized various seminars in the last few years including one on HIV/AIDS.

Ms Shah felt that adoption is definitely a better option for children vulnerable to and affected by HIV/AIDS than institutionalization. The lack of systematic research studies to show the impact of adoption versus institutionalization was also a highlight of this discussion. The Pune VCA is interested in undertaking a study of this kind. She also felt that the adoption of children affected by HIV/AIDS has great scope within the country but almost no one in India has come forward openly to adopt an HIV+ orphan. The VCA also organized a workshop on prevention of deaths among institutionalized children and their causes (Annual Report, ACA, 2004-2005).

VCAs are funded by the central government. In addition to salary support to three full time social workers and a part time accountant, they have a modest budget of Rs 15,000 for administration, Rs 15,000 for travel and Rs 15,000 for publicity. The position of the chairperson is honorary.

Society of Friends of the Sassoon Hospitals (SOFOSH), Pune

SOFOSH was established in 1964 within the premises of one of the largest public hospitals in Maharashtra the Sassoon hospital in Pune. As an NGO, it works over a range of activities including care of destitute and court committed children (<5 yrs), adoption, HIV/AIDS care, support and prevention, TB prevention and cure, nutrition education and support programme.

SOFOSH had established a child care centre in the 1970’s when it became difficult to care for abandoned babies in the pediatric wards of Sassoon hospital. Children (all under 6 years) are admitted to the child care centre through the Juvenile Welfare Board. The children at SOFOSH were found to be living in a warm, clean and happy environment. During the year 2003-2004, a total of 292 children were admitted to the centre. Of these, 124 were adopted, 40 were rehabilitated back to their homes after temporary care, 6 were taken back by their mothers and 6 died. SOFOSH also has a foster care programme where children are placed with foster families prior to adoption. During 2004-2005, SOFOSH had placed 57 children in foster homes. Of these, 30 were adopted, 7 were transferred back to SOFOSH and 19 were still in foster care. There was one death.

Ms Madhuri Abhyankar, Director, SOFOSH, states that adoption allows a child to find a home and a family. She says that now there are more couples willing to adopt HIV affected orphans. She estimates that they have placed about 65 HIV affected children in adoptive homes in the past 3-4 years. However, she says that there has been only one instance where an HIV positive baby has been adopted. The organisation follows up on the children given for adoption for 2 years, after which the adoptive family is supposed to keep them informed on an annual basis. Children who are more than 6 years old and have not been adopted are shifted to other institutions.

SOFOSH’s Director says that although they have maintained detailed records and files on every child they have not undertaken any research to assess the well-being of children in adoptive homes versus those who are institutionalized. She expressed the need for undertaking a research study to look at the impact of adoption on children.

The organisation makes conscious efforts not to separate siblings. However it is not always possible. Four children in a family were orphaned after the death of both the parents due to AIDS. Only the youngest sibling was diagnosed to be HIV positive. The oldest child was 17 years and he worked as a canteen boy to earn a living and support his siblings. SOFOSH placed two siblings together in adoption with a family and the youngest child in an institution. The 17 year old child refused to be adopted and yet his meagre earnings were not sufficient to take care of the needs of his younger siblings. In such complicated situation, it is almost impossible to keep all siblings together.

What are the best options for children under such circumstances? There needs to be a compensation package that should be made available to the children. However, unless adequate safeguards on the use of the compensation for the concerned child are put in place, there is a likelihood of misuse and exploitation.

Later, SOFOSH initiated an HIV/AIDS programme in 1995 with the following objectives:

To provide counseling services to those who have been advised to/or wish to undergo an HIV test

To facilitate medical care for HIV positive persons

To provide emotional, social support and psycho-social care to PLHA

To engage in the rehabilitation of affected individuals, especially children

To initiate support groups for affected and infected individuals coming to Sasson hospital for treatment

The programme recorded 292 new HIV cases in 2003-2004, followed-up 614 cases and recorded 13 HIV deaths. About 13 PLHA were economically rehabilitated and 45 children of PLHA received support for education. In 2003 SOFOSH established one PLHA support group for women and another for men. Thirty seven women and 12 men attend the support group meetings held once a month. In addition, the social workers at SOFOSH follow up the cases through home visits.

The case of Kanta, a young PLHA who was thrown out of her house, is used to instill a positive attitude among PLHA. SOFOSH helped the woman to care for herself and her two daughters by getting her a job with a reputed organization that was open to hiring PLHA. This enabled her to move into a small rented house. Her daughters were tested for HIV and both are negative. Kanta’s mother has decided to come and stay with her and is now helping in looking after the two young daughters. (SOFOSH, Annual Report, 2004-2005). This case is a good illustration to show how work with PLHA can be extended to support children who are affected by the status of the parents.

A key element of the approach followed by SOFOSH is that it is completely ‘child centered’. It endorses and implements the concept of ‘best interest of the child’.

Adoption: Issues, Concerns and Lessons Learned

Even though there is a clear indication that adoption of children affected by HIV/AIDS is a desirable option, the overall adoption statistics are not encouraging enough to presume that such children will be received well by the adoptive parents. Another key issue related to institutional care and adoption is the uncertainty for older children who do not find adoptive families. Organisations like SOFOSH are already challenged with this problem and they are struggling to identify places/institutions to send children who are not adopted once they are above 6 years.

The learnings from the approach to children practiced by SOFOSH, CARA and VCA can be utilized for further replication and/or scaling-up programmes and interventions

· Firstly, adoption agencies provide an option for adoption of HIV affected children. This is an option for rehabilitating children who cannot be otherwise rehabilitated through a community-based approach and would have kept in institutions. Being a member of the Pune VCA, sharing its experiences with CARA and other VCAs will open up the adoption option. CARA, as well as the VCAs, can also play a major role in setting guidelines for adoptive agencies on how to manage children affected by and vulnerable to HIV/AIDS.

· The location of SOFOSH within a large public hospital works well in terms of reaching the most marginalized sections of society. Its location also enables abandoned children with easy access to tertiary level medical facilities.

· SOFOSH is a registered NGO which works autonomously within the campus of a public hospital setting. Autonomous organisations can function with greater independence and flexibility than large public institutions. Again, its physical location enables it to gain access to a large number of PLHA.

· SOFOSH has been looking after abandoned children for the last 30 years and placing them with adoptive parents and families. It has now extended its programmes to meet the needs of children affected by and vulnerable to HIV/AIDS. This illustrates how well HIV/AIDS interventions can work when they are integrated with on-going child welfare/development programmes. Establishing ‘new HIV/AIDS NGOs’ to work with children should only be a second option.

· Supporting networks of PLHA has helped to encourage PLHA to explore community-based rehabilitation for their children and to give less stress on institutional rehabilitation. This approach provides safeguards against infected people preferring institutionalization of their children due to their economic or other vulnerabilities. There is also indication that families are not yet ready to adopt HIV positive children.

In the case of orphan children there is also the need to review and amend the laws of inheritance to protect the interests of the child, so that adoptions do not take place with the motive of acquiring this inheritance.

4.4. Foster Care

There are many different types of foster care. These range from informal care provided in community settings, to pre-adoptive foster care in individual homes to group foster care. There is also the concept of short term and long term foster care (CSA, 2004). With the Convention on the Rights of the Child, there is an impetus to promote non-institutional forms of care for children which include community and family settings.

The Bal Sangopan Yojana, Government of Maharashtra

The Maharashtra government was the first in India to introduce a government foster care scheme for children way back in 1975. The scheme was introduced with the purpose of providing temporary care for children within substitute families. The foster family could be relatives or others. The foster family is provided a nominal grant of Rs 250 per month and the NGO that facilitates the process is given Rs 50 per child per month for administrative expenses. The following table gives details of the scheme in Maharashtra.

The Bal Sangopan Yojana

No. NGO/Organisation Location Children Supported
1. Indian Association for the promotion of adoption Mumbai 50
2 Maharashtra State Women’s Council   40
3 Sree Manav Seva Sangh   10
4 Viadharbha Maharogi Seva Mandal Amravati 10
5 CASP Satara 25
6 Shishuadhar Pune 50
7 Shishuadhar Osmanabad 100
8 Shishuadhar Latur 100
9 Varadaan Nagpur 25
10 Family Service Centre Mumbai 40
11 District Women and Child Welfare Offices Ahmednagar 18
12 District Women and Child Welfare Offices Buldhana 8
13 District Women and Child Welfare Offices Parbhani 3
14 District Women and Child Welfare Offices Raigad 8
15 District Women and Child Welfare Offices Sangli 27
16 District Women and Child Welfare Offices Gadchiroli 17
17 District Women and Child Welfare Offices Aurangabad 8
18 District Women and Child Welfare Offices Thane 8

 

The scheme reached out to about 627 children at a cost of about Rs 19 lakhs (Maharashtra Economic Survey, 2003). There are reports that only 40 percent of the grants were released in 2002. NGOs also found that the Rs 250 per child is highly inadequate to monitor the foster care programme and were requesting an enhancement of the amount (CSA.b)

Despite difficulties in the implementation of the Bal Sangopan Yojna, the scheme has a wide reach and geographical coverage (17 districts) across the state. Even though the number of children covered in each district is small, the Scheme has the potential of reaching children vulnerable to and affected by HIV through an already existing government mechanism.

The mechanism of Bal Sangopan Yojna was utilized during the Latur earthquake in 1993. Under the scheme more than 200 children from the earthquake affected areas of Latur and Osmanabad were rehabilitated in their community with their relatives or neighbours with a monthly financial support of Rs 250. This experiment is considered a successful intervention as after eight years there was little negative impact on the children, according to  Bharti Ghatge of Shishuadhar, who coordinated the rehabilitation effort (TOI, Oct 8, 2001). This model was also successfully operationalised during the 2001 Gujarat earthquake where about 383 orphaned children were placed with relatives and neighbours. The Latur experiment has been an inspiration for people like Sarah D’Mello of CCDT to start community-based rehabilitation of HIV affected children in Mumbai.

SOS Village

The SOS Children’s Village presents another model of group foster care. The SOS Village in Pune has 20 cottages grouped into four clusters with a capacity of 203 children. The village is recognized under the Juvenile Justice Act. The village has a school, community centre and medical facilities within the premises.

Children are housed in cottages with one ‘house mother’. Each cottage has four bedrooms, a living-cum-dining room, kitchen and toilet/bathroom. The Village receives a grant of Rs 500 per child, per month from the government while they estimate an average expenditure of Rs 2000. Hence they have to mobilise additional resources through sponsorships.

Foster Care: Issues, Concerns and Lessons Learned

· Group foster homes provide a more humane and family like environment compared to institutional/orphanage placement. The concept of ‘homes’” with a surrogate mother and siblings fosters a family like environment.

· Children living in the foster care setting will have to move out of these foster care institutions when they attain adulthood. Unless these children are prepared well in advance, they might face problems in the ‘real world’. The Vinmay Trust in Mumbai has undertaken a mentoring programme for older children to assist them to cope and live outside an institution as they grow older. Their interventions include educational scholarships, life skills training, job placements, provision of rent-free accommodation etc. They have also started a ‘transit home’ for children who have to leave institutions once they reach adulthood.

 

5. Children Vulnerable to HIV Infection

5.1. Street Children

There is conflicting information on the estimates of children living in the streets. While organisations like the Human Rights Watch estimate that about 18 million children live or work on the streets in India, the Census of India accounts for only 700,000 people as ‘homeless’ in the entire country (Census, 2001). It is estimated that there are 314,700 street children in Bombay, Calcutta, Madras, Kanpur, Bangalore and Hyderabad combined and about 100,000 in Delhi. Factors like poverty, family disintegration, armed conflicts, natural and man-made disasters, lack of employment opportunities and the attraction of cities are responsible for the increasing number of street children in India.

A study ‘We the Invisibles’ on 6,000 households in Mumbai indicated that more than half the pavement dwellers come from the poorest districts of the state. Another large portion comes from the poorest parts of the country (SPARC, 1985). A study on street children in Mumbai covering a sample of 1,350 children indicated that about 56 percent are migrants from other states and 37 percent of the children had spent more than 5 years on the street. About 52 percent of the children were between 13-18 years and 30 percent between 9-12 years of age (D’Souza et al, 2002).

Street children have received much attention in the media, both national and international, in recent years. The awareness and sensitization efforts have led to several initiatives involving numerous groups working with street children, the launching of specific schemes and programmes at the local, state and national levels and the initiation of numerous studies on street children. However, very limited attention has been given to the vulnerability of these children to HIV infection and to interventions for prevention of transmission. Case studies of some interventions that have successfully integrated HIV prevention work with vulnerable children in Maharashtra, and interventions that have scope for integration are given below.

Shelter Don Bosco: HIV Education and Street Children

Shelter Don Bosco works for the welfare of street children in Mumbai. It has a residential facility with a capacity of 150 children. In addition to this, the facilities are open for street children who would like to wash their clothes and bathe. It also provides counseling, non-formal education and skills training.

There is a drop-in centre for children and the Shelter also runs a street ‘community college’. Shelter Don Bosco has initiated a HIV prevention programme that aims to reach at least 1,000 street children with HIV prevention messages. Shelter Don Bosco provides a good example of how HIV prevention services can be integrated with existing welfare programmes for street children.

Childline

Childline is a 24 hour emergency telephone service for vulnerable children (street children, children who are trafficked etc.) that is available in several cities and also in Maharashtra. A toll free number has been provided where a caller can seek emergency services for children in distress. The city is divided into several zones and an incoming call is routed to the nearest zone. One among the several partner organizations (about 40 in Mumbai alone) will attend to the call and provide the needed support to the caller and vulnerable children in distress..

Childline also works on advocacy with the police, hospitals, the municipal corporations etc. on the needs of street children. For example it has launched a “chacha” police programme where policemen are sensitized on the need to provide more compassionate responses to street children and to protect them from exploitation.

A service such as Childline can be  used very effectively to safeguard the interests of children affected by and vulnerable to HIV, especially children who are living or rehabilitated within the community.

Street Children: Issues, Concerns and Lessons Learned

· Most of the organizations working with street children are located in Mumbai. However Maharashtra has 13 Municipal Corporations and 232 council towns. There needs to be a mapping of street children in the state in terms of numbers, locations and spread, and their risk taking behaviour in the context of HIV transmission.

· Experience seems to suggest that the highest degree of successful rehabilitation of street children takes place within six months of their arrival on the street. There are several organizations who work specifically on railway platforms and bus stations to do this as early as possible. However, evidence indicates that a very large proportion of children have been on the street for more than one year. It is very important, therefore. to put into place mechanisms that would identify street children who have newly arrived in the city, for rehabilitation and to reduce their vulnerability to HIV infection.

· Successful models of integrating HIV prevention into ongoing programmes for street children are available. Documenting the lessons learnt and key issues of integration could lead to replication/scaling up.

5.2. Trafficked Children and Children of Sex Workers

The Nirmala Niketan College of Social work presented a report to the Mumbai High Court in 1996 on the situation of 59 sex workers who were rescued from brothels in Mumbai. Of these, more than 50 percent were less than 18 years old and 71 percent were illiterate. More than 50 percent of the rescued sex workers were from Nepal and about have of the women had either lost one or both parents.

The report states that rescued girls who are placed in government institutions need better counseling facilities and support. In fact, St Catherine’s Home, Mumbai, started a house for trafficked girls in 1996 after some girls were suddenly shifted to their premises. The rehabilitation options need to be individually adapted to the situation of each rescued child. Here again the decisions should be guided by what is in the best interest of the child. The Nirmala Niketan report indicates that while some girls said they would like to go back to their homes, others preferred to be rehabilitated in some institution.

A paper by Kalindi Mazumdar (2000) highlights the role and condition of government run institutions in this regard. She states that the conditions of some of the government run homes are so dismal in terms of diet, psycho-social support etc. that many children prefer to go back to the streets or brothels.

In the earlier section on institutional care for HIV affected children we had discussed organisations that work with children of sex workers. There are several models of interventions - homes, placing children in educational institutions (hostels) and providing services in the red light area. One intervention, specifically for the children of sex workers and trafficked children, is included for analysis in this section.

Prerana

Prerana is an NGO in Mumbai that works for the children of sex workers as well as for the elimination of child trafficking. It has undertaken special efforts to ensure that children of sex workers are not recruited into the sex trade. The Night Care Centres for the children of sex workers being operated by Prerana have an attendance of 40-100 children every night from every  red light area in the city.

Pravin Patkar, director of Prerana estimates that there are 1.5 to 3 lakh children involved in trafficking and commercial sexual exploitation in Mumbai alone. He states that this trade has gone beyond the demarcated red light areas and it now also includes ‘boy prostitution’.

Trafficked Children and Children of Sex Workers: Issues, Concerns and Lessons

· In the context of trafficking, the issue of how collateral agencies such as the police, the  health system and government child welfare institutions respond is crucial for eliminating trafficking as well an preventing HIV infection among these young girls.

· If the standards of care and support are not maintained, organisations set up with a good aim can do harm. It is important that adequate measures are taken so that government and NGO managed organisations provide quality standards of care and support to trafficked children and children of sex workers as a prevention strategy to reduce their vulnerability to HIV/AIDS

· A child friendly approach and an emotionally and psycho-socially supportive environment are essential to ensure that the child does not return to the trade or the street.

 

5. Maharashtra: Department of Women and Child Development

The role that government run and supported child welfare institutions play in the care and support of vulnerable children is vital. It is the critical first step towards the rehabilitation of the child and, therefore, must have a child friendly focus and approach. Often these homes are perceived as “jails” by children (Mazumdar, 2000). This section examines the structure and profile of child care residential institutions in Maharashtra.

The child care residential institutions in Maharashtra are under the jurisdiction of the Women and Child Development Department (WCD). The department is structured as follows:

The WCD department oversees the functioning of about 450 residential care institutions in Maharashtra that care for approximately 30,000 children below 18 years. In addition, there are also about 250 child welfare institutions run by NGOs. Non-institutional care programmes come under the aegis of CARA. Every district has a District Child Welfare Officer. This officer can play an important role in ensuring the implementation of programmes for children affected by and vulnerable to HIV/AIDS. Coordination of the various agencies involved in providing services to children affected by and vulnerable to HIV can also be another key function of the District Offices.

Other government departments in Maharashtra that also provide residential care to children include 1,100 tribal ashram schools under the aegis of the Department of Tribal Welfare, 500 residential schools for the handicapped under the Department of Social Welfare, 2500 educational hostels run by the Department of Social Welfare and another 677 ashram schools run by the Department of Welfare of Scheduled Caste, Nomadic Tribes, Scheduled Tribes and other backward castes.

7. CAMPAIGN ON QUALITY INSTITUTIONAL CARE FOR CHILDREN AND ALTERNATIVES

A campaign ‘Quality Institutional Care for Children and Alternatives’ (QICC&A) was initiated in Maharashtra in 2002 with a goal to ensure quality institutional care and to explore de-institutionalization options that could be either family or community based. This campaign was started nationally by Child Relief and You (CRY) and Saathi was the implementing agency for Mumbai.

The campaign was launched with a state level consultation process, the participants being 175 representatives from government and non-government organizations with the following vision: ‘that all institutions in the State have to be reached out to; that every child in the institution will have the right to desirable standards of quality care and; that every child will have the right to be in his/her family or have family like options for her/his growth and development’.

Apart from organizing a consultative workshop on the Juvenile Justice Act and camps for children, it also launched a children’s wall magazine, ‘Humari Awaz Suno’ to reach out to one lakh children in 750 institutions. The Campaign has covered 17 districts across 3 regions in the state and been further initiated in 2 new districts. In 2004, it moved from working with institutions to encourage quality care to policies impacting on children in institutions and factors affecting institutionalization. The campaign involved and engaged 40 more partner organizations including organisations working in the field of child rights as well as other developmental issues. The campaign has become part of the state task force on the implementation of the Juvenile Justice Act 2000, and is evolving a state plan of action on juvenile justice. While the campaign was able to bring about some impact on the provision of quality care and promote alternatives for children, issues like frequent transfers of the WCD Secretary significantly impeded the implementation process.

Ms Nishita Shah, Coordinator of VCA feels that despite the campaign, the condition of government run institutions, baring a few exceptions, continues to be poor. Mr Ashwini Kumar, Commissioner, at the Commissionerate Office in Pune feels that it would take time for the QICC&A to bring about an impact on those institutions which have been running in a particular manner for the past 15-20 years. Regular monitoring and strict enforcement of norms is the way forward - norms such as the provision of one toilet for every seven children and one bathroom for every 10 children. However, it is seen that the functioning of government run institutions in Sholapur, Kolhapur, Bhandara etc have improved.

The issues of children affected by and vulnerable to HIV/AIDS had not been seriously considered by the WCD Department according to Mr Kumar. While he was of the opinion that institutions were not the answer, he had no idea about how to operationalise community based approaches and thus requested a blueprint. This shows that even though WCD is concerned with the issues related to children affected by and vulnerable to HIV/AIDS, it does not have the required knowledge and needs technical assistance to operationalise a programme.

The WCD recognizes the important role of nutrition in caring for children. A sustainable option for providing nutrition to children affected by and vulnerable to HIV/AIDS is to link their programmes with ICDS, which would ensure greater and sustainable coverage.

8. THE INTEGRATED CHILD DEVELOPMENT SCHEME (ICDS)

The ICDS is the largest government sponsored child welfare programme in the world. The programme caters to pregnant women, lactating mothers and children 0-6 years with a package of services. In terms of reach and coverage, ICDS has the highest potential of reaching children affected by HIV/AIDS at the community level. Therefore it makes sense to involve the anganwadi worker at some level to care for the affected children at the village/slum level.

The details and modalities of this arrangement would need to be worked out taking into account the existing workload of the anganwadi worker and the package of services that could be delivered. A system similar to the ‘fee for service’ or ‘performance based incentives’ worked out for the ASHA workers under the National Rural Health Mission can be planned if the anganwadi worker is to be involved.

9. CHILD RIGHTS AND POLICIES

The Convention on the Rights of the Child is a universally agreed upon set of non-negotiable standards and obligations for children and most countries in the world are signatories to this Convention. India ratified the Convention on the Rights of the Child in 1992. The key issue of the Convention is that it places focus on the interest and development of the child and puts an obligation on governments and civil society to safeguard the rights of children in every society. The 2001 UN Declaration on the Commitment to HIV/AIDS states that countries would develop national policies by 2005 on dealing with OVC. It states that governmental, family and community capacities would be developed and implemented by 2005 (Christian Aid, 2004).

‘The Committee on the Rights of the Child has interpreted ‘other status’ to include the HIV/AIDS status of the child or his/her parent(s). There are many States that deny that there are children with HIV/AIDS in institutions. For example, in Kerala, the department responsible for orphans said that there were no AIDS orphans and that if needed they would set up separate institutions.” (Frontline, 2004)

It is important that national and state level policies and plans are developed with the perspective based on the internationally agreed upon rights of children. Dr Karnatake of MSACS was of the opinion that any policy developed for children vulnerable to HIV should be made for ALL children and not just children affected by and vulnerable to HIV/AIDS.

9.1 The Maharashtra State Human Rights Commission (MSHRC)

The MHSRC was set up in 2001 and has a chairperson and four members. Its office is located in Mumbai. The State Human Rights Commission is a statutory autonomous body intended to help ensure and protect the human rights of all people in Maharashtra.

Citizens can file a complaint/petition for violation of any human rights. This complaint is first reviewed by a member of the Commission and if it is deemed to be within the jurisdiction of the Commission, an enquiry is undertaken. The Commission also has the power to visit, under intimation to the State Government, any jail or other institution under the control of the State Government, where persons are detained or lodged for purposes of treatment, reformation or protection, to study the living conditions of the inmates.

The Commission clearly lists in its mandate the protection of human rights of people affected by HIV/AIDS. It is important for NGOs, PLHA and concerned citizens to know that the MSHRC can be approached for violations of human rights for people affected with HIV/AIDS.

Advocacy should be undertaken on the following two fronts:

1.The MSHRC should specifically include the protection of rights of children vulnerable to and affected with HIV/AIDS as part of its mandate. Though in broad terms “people affected by HIV/AIDS” would include children.

2. Information about the MSHRC should be provided to Positive Peoples’ groups and forums as well as NGOs and government institutions working in the area of HIV/AIDS.

9.2. Maharashtra: Child Rights Commission: 2002

The Maharashtra Government has constituted a Child Rights Commission, the first in the country, to safeguard the rights of children and help in their overall development. This is one step the government took under the Policy for Children, 2002.

10. NATIONAL POLICY AND PLAN OF ACTION FOR CHILDREN

India adopted the National Policy on Children in 1974. The policy reaffirmed the constitutional provisions and stated that ‘it shall be the policy of the State to provide adequate services to children, both before and after birth and through the period of growth to ensure their full physical, mental and social development. The State shall progressively increase the scope of such services so that within a reasonable time all children in the country enjoy optimum conditions for their balanced growth’.

National Plan of Action for Children: 1992 and 2005

A National Plan of Action for Children has been formulated keeping in mind the needs, rights and aspirations of 300 million children in the country, and sets out quantifiable time limits for India's Charter of Action for Children by 2000 AD. This was further revised in 2005 from a rights’ perspective and viewing the child as an asset.. The Plan gives special consideration to children in difficult circumstances and aims at providing a framework, for actualisation of the objectives of the CRC in the Indian context.

The Plan has a special section on children in difficult circumstances. The following categories are listed: street children, slum and migrant children, orphans and destitutes; children suffering from AIDS, children of parents with AIDS and AIDS orphans, children of prostitutes and child prostitutes and juvenile delinquents and child labourers. All these children come under the purview of ‘children vulnerable to and affected by HIV/AIDS’. About six broad activities are listed in the plan for the achievement of the goal of protecting children in difficult circumstances.

To make the aims and activities of the plan more need-based and area-specific, the Central Government has urged the State governments to prepare a Plan of Action for Children for their States, taking into account the regional disparities that may exist. Fifteen states have prepared State Plans of Action on the lines of National Plan of Action 1992.

The National Plan of Action, 2005 is divided into four main areas– child survival, child development, child protection and child participation. The new plan also has a separate section on children affected by HIV/AIDS (Annexure 1).

11. CHILD DEVELOPMENT POLICY: MAHARASHTRA 2002

A Child Development Policy was developed in Maharashtra in 2002. In fact, since 2001 there have been advocacy efforts, led by CCDT, to have a specific policy or provision for children affected by and infected by HIV/AIDS in Maharashtra. The salient features of the Maharashtra Policy, that is also relevant to children affected by and vulnerable to HIV/AIDS, include:

• Pregnant women would be registered and a yellow card would be issued to them to avail of health and nutrition benefits. After the birth of the child, the yellow card would be replaced by a ‘birthday card’.

• The existing anganwadi centres would function as resource-cum-service centres with special emphasis on children of up to two years of age.

• Adoption would be promoted as a concept of ‘family for a child’ rather than ‘child for a family’. De-addiction programmes would be conducted for the school children and street children as well as the inmates of rehabilitation centres and orphanages.

• A planned intervention programme would be drawn up in collaboration with voluntary and social organisations to prevent and reduce the incidents of child sexual exploitation and immoral trafficking. A child crisis intervention centre would be supported at various institutions for children in association with the NGOs, public-spirited citizens, lawyers, health, professionals and social workers.

• Child marriage prevention officers would be appointed to vigorously implement the child marriage restraint act in the State.

• Loan facilities would be provided to the parents of child labourers under employment programmes to motivate them to withdraw the children from work.

• An intervention package comprising of testing, treatment and care would be placed in all hospitals to ensure reduction of HIV transmission from mother to child.

India has some of the best policies as the National Plan of Action for Children, 1992 and 2005, have shown. They seem to be announced with much fanfare as the 1992 National Plan for children or the 2002 Maharashtra Child Development Policy, and are then somewhat relegated to the background. In order to reach the benefits of the policies to the children, the focus at the national, state and local levels should to be on policy implementation. There should also be concerted efforts to disseminate these policies and plans to different stakeholders – government, NGOs, children themselves and civil society, to ensure policy implementation. More frequent and active mechanisms for review of policy implementation are required.

The National Plan for Children 1992 and 2005 was announced by the Minister of HRD. It included a very specific mention of children vulnerable to and affected by HIV/AIDS. Yet nobody from MSACS, MDACS, WCD, the NGOs, child rights networks and the CBOs, who were part of this study, were aware of this plan or its specific reference to protecting HIV affected children.

The Maharashtra government developed its own “Child Development” plan in 2002. The policy makers interviewed during this assessment were also not aware of this plan.

National and state level responses to the issue of children affected by and vulnerable to HIV/AIDS must go beyond the development of plans and policies. The present assessment indicates a tremendous potential for bringing together the micro experiences into a larger macro environment, with the goal of reaching most of the vulnerable and affected children throughout the state, not just in the larger urban areas of Maharashtra. However this will be feasible only if the development of state plans follow a process that focuses more on policy implementation. A quick review of the Maharashtra Child Development Plan should be undertaken to assist the state in deciding which new elements of the National Plan should be added to it.. This should be followed by developing a policy implementation plan with involvement of NGOs, children and civil society.

12. CHILD-CENTERED APPROACHES TOWARDS ACHIEVING CHILD RIGHTS

Children are an enormous force and resource in any community. Their energies and resources can be harnessed towards their own development and development of other children in the community. At a community level and advocacy level, they can play a crucial role in ensuring policy implementation and ensuring that their rights are provided.. In the context of children vulnerable to and affected by HIV, they can also provide crucial social support and monitor whether programmes for affected and vulnerable children are actually fulfilling their objectives.

The Institute of Health Management, Pachod (IHMP) pioneered the Bal Panchayat (Children’s Councils) approach in 1992 and has trained more than 75 NGOs in child-centered approaches. It has published a manual in Marathi on how to establish Children’s Councils. The learning from implementing Children’s Councils, which is already replicated by other NGOs, can be documented and scaled-up throughout the state. The Children Councils can also be mobilized to monitor the implementation of the state plan for children. The Councils can be divided into departments handling various sub-groups like children affected by and vulnerable to HIV/AIDS.

13. NETWORKS

A rights based approach necessitates the establishment for broad based networking across many areas. There are various examples of networks dealing with children in Maharashtra that have the potential to mainstream HIV into their agenda..

The Action for the Rights of the Child (ARC) is network of 17 NGOs in Pune working on the right to education for the past 14 years. It endorses the child rights’ perspectives and could be mobilised to undertake advocacy for the rights of children vulnerable to and affected by HIV/AIDS. World Vision has brought together about 17 FBOs under the umbrella ‘CORINT’ to share experiences and identify best practices.

Over 56 organizations and networks working on child rights have formed the Child Rights Network to discuss how globalization and privatization have impacted poor children all over the world as governments cut back investment in social development. It examines the accountability and responsibility of the state and international institutions, particularly financial institutions to ensure the protection of rights of children growing up in the economic, cultural and political climate driven by a free market. January 20th has been declared as the Children’s Rights Day by the World Social Forum.

14. MEDIA RESPONSE

Civil society has a very important role in policy implementation and the media has a wide reach. The media can disseminate the issues of children affected by and vulnerable to HIV/AIDS to create an enabling environment and highlight the ‘best practices’ from the field. It can also monitor policy implementation and highlight obstacles and gaps in implementation.

The media also has the responsibility of not depicting women in a derogatory manner in an attempt to gain extra mileage. A media report which was subsequently relayed across the internet in an e-forum mentioned that HIV positive women are ‘abandoning’ their children in large numbers. This may not be true for a majority of HIV positive mothers, who yearn for the best for their children even at the cost of their own health and well being. If HIV positive mothers seek institutional care for their children, it is because that they consider it as the only available option for their child. To frame this issue as ‘mothers abandoning children’ is to be unfair to all those women. Instead, the message should be focused on increasing access to services for HIV positive mothers so as to enable them to plan for their children in the eventuality of their death.

15. SCALING-UP AND REPLICATING- SPECTRUM OF SERVICES AND POLICY IMPLEMENTATION

The aim of this rapid assessment is to identify ‘best practices’ at the community level and explore the opportunities for linkages with other services in the interest of children affected by and vulnerable to HIV/AIDS in Maharashtra. This report has made an attempt to capture the work done through different approaches in caring for children affected by and vulnerable to HIV/AIDS, and has also identified other child welfare, child development and child health programmes into which, potentially, HIV/AIDS interventions can be integrated.. While the interventions run by NGOs, CBOs and FBOs have limited reach, both geographically and in absolute numbers, government schemes have a greater reach across the state. There is great concern about the quality of care provided by the government run child care institutions while NGO, CBO and FBO interventions receive appreciation for the quality of services provided. It is time that the efforts of the providers are synergized so that the limited resources reach out to the growing number of children affected by and vulnerable to HIV/AIDS in Maharashtra.

A framework for understanding the spectrum of care and support for children affected by and vulnerable to HIV/AIDS is shown below (Sussman, 2005). The spectrum of services has community/family based rehabilitation at one end and institutional care at the other end with options of adoption and foster care in between. It should be noted that there are various sub-categories in each segment of the continuum as well as some combinations too.

Spectrum of Care for Affected and Vulnerable Children

 

In the context of developing a locally specific response to children affected by and vulnerable to HIV/AIDS in Maharashtra, it is essential to develop strategies across the wide spectrum of options In order to strengthen them. Strategies and interventions for the care and support of children vulnerable to and affected by HIV/AIDS in Maharashtra should be developed using the Global Framework for the Protection, Care and Support of Orphans and Vulnerable Children living in a world with HIV/AIDS. The key strategies of the framework include strengthen the capacity of families; mobilise and support community-based responses; ensure access to essential services; ensure that governments protect the most vulnerable children and; raise awareness to create a supportive environment

Operationalizing the above strategies would necessitate working at different levels - policy, implementation, advocacy and research. At the policy level, the Maharashtra Child Development Policy should be reviewed and adapted in accordance to 2005 National Plan of Action for Children. This policy should be widely disseminated within the government structures, NGOs, CBOs, FBOs, networks and media.

At the implementation level, local assessments (city/district) should be undertaken and plan of actions developed for implementation. In order to ensure that services are extended to children affected by and vulnerable to HIV/AIDS two things need to happen. NGOs, FBOs and CBOs should establish good linkages between their interventions and these schemes so that the target group can access services throughout the state. Advocating with existing interventions to open up their services to children affected by and vulnerable to HIV/AIDS is another option. Anandgram, is a Pune based NGO, that for the past 40 years has worked for the rehabilitation of leprosy patients and their families. They have a school for more than 250 children. Now, as leprosy is on the decline, they are willing to consider the needs of other vulnerable children.

On the other hand the government schemes should integrate HIV/AIDS into it, so that these services are extended to children affected by and vulnerable to HIV/AIDS. Maharashtra government’s Bal Sangopan Yojana was adapted during the Latur and Gujarat earthquakes with a fair measure of success. A framework for scaling up and adapting some of these micro experiences in the state needs to be prepared. The Bal Sangopan scheme needs to be assessed in the context of children affected by and vulnerable to HIV. It is also essential to develop safeguards under such a programme so that the interests of the child are not violated at any level.

Campaigns such as QICCA need to be sustained to ensure that basic minimum standards are adhered to by all institutions. At the same time, Children’s Councils can be established in the high prevalence districts for the welfare of all children, including those affected by and vulnerable to HIV/AIDS. The Children’s Council can have 4-5 departments, each corresponding to a key area of Maharashtra’s child development policy. One department of the Children’s Council could be responsible for the care of the children affected by and vulnerable to HIV/AIDS.

Much needs to be done in Maharashtra at the advocacy level. The issue of children affected by and vulnerable to HIV/AIDS needs to be put forward to policy makers at the state level. Most of the policy makers and programme managers consider this a newly emerging issue and do not have much knowledge on the topic. Technical support and capacity building is hence required at all levels.

The Maharashtra assessment thus provides us with a few directives on how to address the needs of children affected by and vulnerable to HIV/AIDS. These include:

Institutional mechanisms are required at the state, city and district levels to enable a scaled-up response to the needs of children affected by and vulnerable to HIV/AIDS.

The Maharashtra assessment indicates that the needs and programmatic responses for affected and vulnerable children are very different. The State will have to plan for the needs of both affected and vulnerable children.

State level foster care schemes such as the Bal Sangopan scheme can be used for ensuring wider and sustainable reach.

A sustained policy advocacy initiative is required at the state level with different stakeholders to ‘table’ the issue of children affected and vulnerable to HIV/AIDS.

Documentation of best practices is required. Also, policy briefs and information packages on the issue would provide a common orientation to the different stakeholders.

The assessment indicates the potential for formulating a good community based response to the needs of HIV/AIDS affected children. However this potential can be converted into action only if there is a ‘child centered’ perspective amongst all the stakeholders.

The assessment shows that the issue of children affected by and vulnerable to HIV/AIDS is a cross cutting one, straddling different ministries at the government level, and NGOs, FBOs, CBOs, positive persons networks etc. at the civil society level. The multi-sectoral nature of the issue demands well planned and executed coordination at all levels.

The assessment also points out the fact that there is not much information and knowledge on this ‘grey area’. One such area, assessment of the long term impact of adoption versus institutionalization needs to be undertaken. In conclusion, the Maharashtra rapid assessment indicates that there is potential for framing a collaborative, child-centered response to the needs of children affected by and vulnerable to HIV/AIDS.

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Annexure 1

National Plan of Action for Children, 2005

Section 16- Children Affected by HIV/AIDS

16.1 GOAL

16.1.1 To stop the growth of HIV/AIDS and sexually transmitted infections by 2010

16.1.2 To reduce the proportion of infants infected with HIV by 20 % by 2007 and by 50 % of all such children by 2010

16.2 OBJECTIVES

16.2.1 To undertake a country-wide assessment of children infected and affected by HIV/AIDS to ascertain the spread, reasons and nature of disease among children and facilitate child specific HIV/AIDS policy development and interventions

16.2.2 To ensure a supportive and enabling environment for care, treatment, protection and rehabilitation of children infected and affected by HIV/AIDS

16.2.3 To ensure access and availability of quality health services, including health education, to reduce the risk of HIV/AIDS and to treat and support those infected.

16.2.4 To scale up prevention of mother-to-child transmission at all levels, during pregnancy, child birth (ensuring correct birthing practices as per global guidelines and administering Nevirapine) and breast-feeding

16.2.5 To ensure availability of treatment, including Anti-Retroviral Therapy, free of cost, to all children living with HIV/AIDS, from the initial stages of infection and to also ensure availability of medicines in pediatric dosages and regimes for such treatment.

16.2.6 To implement policies and legislations to promote inclusive community based approaches at the national and state levels with the aim of reducing the vulnerability of children infected and affected by HIV/AIDS, and their improved access to health, education and other support services without any biases or discriminatory practices.

16.2.7 To provide psychological, educational and health services to children affected by or vulnerable to HIV/AIDS

16.2.8 To promote community based approaches and build capacity of families to deal with HIV/AIDS

16.3 Strategies

16.3.1 Ensure non-discrimination through the promotion of an active and visible policy of de-stigmatisation of children infected, orphaned and made vulnerable by HIV/AIDS

16.3.2 Ensure easy accessibility, adequate supplies of safe and quality blood and blood components for all, irrespective of economic or social status

16.3.3 Raise awareness, improve knowledge and understanding among the general population about AIDS infection and STD routes of transmission and methods of prevention

16.3.4 Ensure effective education to children and community on reproductive health, responsible sexual behaviour, blood safety, safe clinical practices, protective hygiene and prevention of substance abuse

16.3.5 Include information on sexual and reproductive health, including HIV/AIDS, in school curriculum

16.3.6 Develop appropriate counseling services in schools

16.3.7 Ensure ongoing training of health workers (doctors, nurses, counselors and other paramedical professionals) in communication and coping strategies for strengthening technical and managerial capabilities

16.3.8 Create awareness among students through Universities Talk AIDS programme and other programmes

16.3.9 Enable children affected by HIV/AIDS to attend schools without discrimination

16.3.10 Provide special packages for children abandoned on account of HIV/AIDS, provide extended care and protection, especially for disadvantaged and stigmatized children

16.3.11 Ensure availability of ‘prevention of mother-to-child transmission services’ in all ante-natal care clinics as close to the home of mothers as possible. Availability of Nevirapine and maternal care to ensure safe birth to HIV positive mothers

16.3.12 Strengthen linkages with other agencies (government and NGOs) working towards the prevention of HIV/AIDS. Link programmes for prevention of trafficking for commercial sexual exploitation with HIV/AIDS prevention

16.3.13 Create linkages between TB control programme and HIV/AIDS programme

16.3.14 Create a legal provision to ensure that an HIV positive child is not deprived of his dignity, liberty and rights, including right to property.

16.3.15 Ensure access to medical health services without discrimination because of HIV/AIDS

16.3.16 Support and promote community based care of children affected by HIV/AIDS and ensure their access to shelter and services on an equal basis with other children

16.3.17 Provide services for youth specific HIV education to develop life skills to reduce risks of HIV infection through peer education and partnership with parents, families, educators and healthcare providers

16.3.18 Provide for effective supply and service system referral mechanism and quality psycho-social care to all affected children

16.3.19 Promote community based approaches at national and state level to enable non- relation adoption/fostering of children (without separation of siblings) orphaned by AIDS within the community itself wherever possible

16.3.20 Develop/promote community based institutions that protect and promote the rights of all children including those affected and infected by AIDS