Status of Orphan Vulnerable Children Infected

or / Affected by HIV/AIDS in Delhi

Stakeholders Meeting to Share Delhi OVC data,

Wellness Assessment , Key issues, Possible solutions
& Constitution of State OVC Forum
on
21st July 2010

Presented By
Dr A.K. Gupta MD (Pediatrcis)
Additional Project Director
Delhi State AIDS Control Society
Govt of NCT of Delhi
 Summary of the AIDS Epidemic, 2008
Number of people living with HIV (global) 33.5 million

Number of people living with HIV (India) 2.4 million

Number of people living with HIV (Delhi) 35000

People newly infected with HIV in 2008 (global) 2.7 million

People newly infected with HIV in 2008 (India) 0.15 milion

People newly infected with HIV in 2008 (Delhi) 6000

AIDS-related deaths in 2008 (Global) 2.0 million

AIDS-related deaths in 2008 (India ) 250000

AIDS-related deaths in 2008 (Delhi) 290 (58 women)

 People in HIV Care -Cumulative Data Delhi
(1-04-04 – 30-06-10)

• Total PLHA registered- 26909 [Adults- 25187, Children-1722

(6.4%)]
• Initiated on ART- 12313/26909(45.8% )
-Adults- 11485/ 25187 (45.6%),
-Children-828/1722 (48%)
• Alive on ART- 7775/12313 (63%)
-Adults- 7218 ,
-Children- 557
• Deaths- 1385 (11.25%)
-Adults- 1320,
-Children-65
• Lost to Follow-Up – 1187/12313 (9.64%)
-Adults- 1133
-Children-54
 Impact of Antiretroviral Treatment in
Reducing No. of Deaths Globally
3.0

2.5
Number (millions)

2.0

1.5

1.0

0.5

0
1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008
Year

No antiretroviral therapy
At current levels of antiretroviral therapy

Estimated number of AIDS-related deaths with and

without antiretroviral therapy, globally, 1996–2008
Outcomes of Antiretroviral Therapy New Delhi , AIIMS
(WHO Bulletin 2010)

•Between 1 May 2005 and 31 October 2006, 1325

patients were enrolled in the ART clinic, AIIMS
•Of these patients, 631 treatment-naive
adolescents and adults were eligible for the study
•Survival analysis showed that 90% of the
patients were alive at 6 months, 87% at 12
months and 84% at the end of 36 months.
•The overall mortality rate was 8.5 per 100
patient–years and the post-90-day mortality rate
was 5.8 per 100 patient–years
 Impact of HIV/AIDS on the Affected Family &
Children
•HIV Infection in parent/ parents
•Children may also get infected
• People on Regular ART have a normal life - 75% HIV positive.

Proportion of HIV Positive Individuals Not Availing Adequate HIV care

•25% HIV Positive clients do not avail HIV care
•After initiation of Anti Retroviral Treatment, 10-11% gets Lost to Follow Up

This leaves a significant number of HIV positive individuals without proper

HIV care resulting in

•Severe Illness in parents with Children becoming caregivers

•Death of parents resulting in Orphan & Vulnerable Children
•Problem of Inheritance
•Economic problem –Child withdraw from school, inadequate food, problem of
shelter, reduced access to health service, Increased vulnerability to HIV Infection
•Children without adequate adult care- Psychological stress, Discrimination,
Exploitation, Child labour, Sexual exploitation, Life on street, Increased
vulnerability to HIV Infection
Orphan Vulnerable Children
 Definition of Orphans and Vulnerable Children
(United States PEPFAR OVC Programme )

Orphan: A child (0-17 years old) who has lost one or both parents to
HIV/AIDS.

Vulnerable: A child (0-17 years old) more vulnerable because of any or

all of the following factors that result from HIV/AIDS:
— Is HIV-positive
— Lives without adequate adult support, such as in a household with
• chronically ill parents
• a recent death from chronic illness
• headed by a grandparent / or by a child
— Lives outside of family care, for example, in residential care or on the
streets
— Is marginalized, stigmatized, or discriminated against
 Global Situation of OVC (UNAIDS 2008)
Name of Country Children 0-17 orphaned by Children 0-17 orphaned by all
HIV/AIDS (Million) causes (Million)
World 17.5 163.0
Africa 14.2 (81.14%) 58.4 (35.82%)
Sub-saharan Africa 14.1 55.3
Eastern & Southern Africa 9.7 27.4
Western & central Africa 4.4 25.9
Asia No Data Available 82.4 (50.55%)
South Asia No Data Available 50.0
East Asia & Pacific No Data Available 31.3
Countries with large No. of
orphans
South Africa 1.4 2.5
Nigeria 1.2 9.7
Uganda 1.2 2.5
Zimbabwe 1.0 1.3
Tanzania 0.97 2.6
India 2 million? 25.0 (15.35%)
 Children Infected / Affected by HIV/AIDS: Situation in Delhi
(June 2010)-
Source: DSACS, Chelsea, Drone foundation, NAZ foundation & Navjeevan Sewa Mandal
Indicator Male Female Total
A. Number of HIV infected children 1170 (67%) 552 1722
registered in HIV care
B. Number of HIV infected children Alive 400 (71%) 157 (28.5%) 557
& on ART
C. Number of Children affected by 373 (50.3%) 368 741
HIV/AIDS (as per data available)
D. Total Number of Children Infected/ 773 525 1298
Affected by HIV/AIDS (B+C)
E. Number of orphans vulnerable children (as per data available) – Total-427
(a) Children Infected by HIV/AIDS 40 18 58 (13.6%)
Single orphans 8 4 12
Double orphans 32 14 46
(b) Children Affected by HIV/AIDS 182 187 369 (84.4%)
Single Orphans 166 173 339
Double orphans 16 14 30
Grand total of OVCs (a+b) 222 205 427
 Guardian Status of Double Orphans (n=76)

INDICATORS Guardian of Double Orphan (n=-76)

GRAND EXTENDED ELDER Hostel ORPHA

PARENT FAMILY SIBLING NAGE

Male 18 3 2 1 22

female 10 3 1 2 14

Grand Total 28 6 3 3 36
 Problems Faced By OVC
Economic hardship - With the family’s source of economic support
threatened and savings spent on care.
Lack of love, attention and affection - The loss of a parent often means that
young children are left without consistent responsive care.
Withdrawal from school - Economic pressure and the responsibilities of
caring for parents and siblings can lead children to withdraw from school
Psychological distress - The illness and death of their parents can cause
extreme psychological distress in children
Loss of inheritance - Orphans (and widows) are often deprived of money or
property that is rightfully theirs.
Increased abuse and risk of HIV infection – Many orphans and vulnerable
children are forced into harmful child labour and/or sexually exploited for cash or
to obtain ‘protection’, shelter or food.
Malnutrition and illness - Orphans and other affected children are at
increased risk of malnutrition and illness and may be less likely to get the
medical care they need.
Stigma, discrimination and isolation - Dispossessed orphans are often
obliged to leave their homes and to live in unfamiliar and sometimes
unwelcoming places. Children orphaned by AIDS are more likely to be rejected
by extended family members than those orphaned due to other causes
Study by DSACS July 2010- Status
of 65 Orphan Vulnerable Children

Data
OVC in Residential care at Drone
Foundation Gurgaon
OVC in Residential care at NAZ
Foundation Delhi
 Comparison b/w OVC under Permanent Residential Care
(NAZ & DRONE) & Home Care with DIC support (CHELSEA)
S.No. Indicator Children in permanent Home care with DIC support
residential care (n=40) (n=25)

1 Age (mean ± SD), 9.75 ± 3.75 (2-17) 9.96 ± 3.74 (3-18)

range
2 Sex M-24, F-16 M-12,F-13

3 BMI (mean ± SD), 15.84 ± 1.66, 50th percentile 15.14± 2.22, < 50th percentile & above
percentile 25th percentile

4 HIV Positive 39 9
5 Status of ART 28 (11 on Pre ART) 7 (2 on Pre ART)

6 No. of Months of 32.81 ± 15.02, (2-60 month) 27.33 ± 14.65 , (7-48 months)
ART (Mean ± SD),
range
7. Education 39/40 (97.5%) 18/25 (72%)
7 Orphan status Double orphans- 33 ( 32 Double orphans- 24 ( 8 Infected, 16
Infected, 1 affected) affected)
Single orphan- 7 infected Single orphan- 1 infected
Comparison b/w OVC under Permanent Residential Care (NAZ &
DRONE) & Home Care with DIC support (CHELSEA) by
CHILD STATUS INDEX
 Rating the CSI Factors
Each of the 12 factors is rated on four levels of well-being. The
higher the score, the better the well-being of the child.
4 = Good -The child’s status is good; there are no concerns
and no apparent risk for this factor.
3 = Fair -The child’s status is generally acceptable, but there
are some concerns on the part of the caregiver or field worker.
2 = Bad -There is concern that the child’s status on this
factor is not good. Additional resources or services are needed.
1 = Very bad -The child is at serious risk on this factor.
Urgent
attention to the child or the situation may be needed.
Factors Avg. score Avg. score Remarks
in in Care in
Institutiona Drop in
l care centre
(n=40) (n=25)
Food Security 4 1.8 The food security of group of children attending DIC is not
good. Additional resources are needed. But it is good in
permanent care
Nutrition & Growth 2.5 1.9 The average growth & nutrition of OVCs is affected but more
so in group of children attending DIC. Additional resources are
needed.
Shelter 4 1.64 Shelter of children in permanent care is good. It is bad in
children attending DIC. Additional resources are needed
Care 4 3 Care of Children attending DIC is acceptable & good for
children in permanent care
Abuse & 3.25 4 Status of Children attending DIC on this factor is good &
Exploitation acceptable for children in permanent care
Legal Protection 2 2 Additional resources or services for legal Protection are needed
for OVC.
Wellness 4 4 The status in both groups is good.

Health care 4 2.36 The health care services for group of children attending DIC is
Services bad. Additional resources are needed
Emotional health 4 3 Emotional Health of Children attending DIC is acceptable & is
good in children in permanent care
Social Behaviour 4 4 The status in both groups is good.

Performance 3.85 2.72 The status of group of children attending to DIC on this factor is
acceptable and is good in those in permanent care
Education/Work 4 2.96 The status of group of children attending to DIC on this factor is
acceptable and is good in those in permanent care
 Services Required for OVC
• Formal / Non Formal education
• Health
• Nutrition
• Psycho-Social Support
• Family capacity
• Community capacity
• Resources (Govt Expenditure per child on OVC) & Linkage
with Existing Govt Welfare schemes
• Protection- legal Support
• Recreation
• Skill Development
• Enabling environment free from stigma & discrimination
• Support Group
• Institutional care & shelter
 Existing Govt. Welfare Schemes Suitable for
HIV/AIDS Affected Families/Individuals &
Estimated Number of Current Beneficiaries
1. Old Age pension- Rs.1000 pm support for senior citizens (>60 years of age ) for those
whose family income from all sources does not exceed Rs. 60,000/- p.a. - 28
2. Widow pension (Rs. 1000/pm support for those whose family income from all sources does
not exceed Rs. 60,000/- p.a. )- 337
3. Linkage to ICDS programme (supplementary nutrition)- 1298
4. Financial assistance to HIV/AIDS affected cases with disability- 5
5. Rashtriya Swasthaya Bima Yojana - Health insurance cover to BPL families in
unorganized sector. 75 % premium will be paid by central Govt and 25% by state Govt.
Cashless facility in selected hospitals up to 30,000/annuum - 1298
6. Janshree Bima Yojana- to BPL households, beneficiary is insured for Rs. 50,000/- in
case of accidental death,Rs.20,000/- in case of natural death & Rs. 50,000 in case of
permanent disability, Premium is Rs.200,shared equally by Central and State Govt.-1298
7. Financial assistance to Destitute Women- Rs.1000/pm as subsistence allowance- 1
8. Financial Assistance to Poor Widows for Marriage of their daughters and financial
Assistance for orphan girl for their marriage (Rs. 20,000 support for those whose family
income from all sources does not exceed Rs. 60,000/- p.a. ) – 30 orphan girls (infected-
, affected)
9. Delhi Arogaya Nidhi- State Illness Assistance Fund to BPL patients
10. Free Education , free books, dress and mid day meal- 1298
 Six Models For Care of OVC
• A registered residential care facility for primarily HIV infected
children.
• A registered adoption and foster care program, where a welfare
society owns homes and appoints community mothers to care for a
group of children..
• An unregistered residential care setting, which houses HIV+ and
destitute mothers with their children and offers continued care for
the children when the mothers are ill or die.
• Home-based care and support, where caregivers are identified
and children are legally placed in foster care, and assistance is
given through foster care grants.
• Community-based support structures, where grandparents or
other close relatives care for their orphaned grandchildren, with no
government support.
• Informal fostering where women in the community volunteer to
care for orphans in a group home setting, with no government
support
 FIVE KEY STRATEGIES
FOR CARE OF OVC

1. Strengthen the capacity of families to protect and care for

orphans and vulnerable children by prolonging the lives of parents and
providing economic, psychosocial and other support.
2. Mobilize and support community-based responses.
3. Ensure access for orphans and vulnerable children to essential
services, including education, health care, birth registration and others.
4. Ensure that governments protect the most vulnerable children
through improved policy and legislation and by channelling resources
to families and communities.
5. Raise awareness at all levels through advocacy and social
mobilization to create a supportive environment for children and
families affected by HIV/AIDS

Contd.
 BUILDING THE CAPACITY OF FAMILIES

• Improve household economic capacity

• Provide psychosocial support to affected children and their
caregivers
• Strengthen and support child-care capacities
• Support succession planning
• Prolong the lives of parents
• Strengthen young people’s life skills

MOBILIZING AND SUPPORTING COMMUNITY-BASED

RESPONSES

•Engage local leaders in responding to the needs of vulnerable community

members
•Organize and support activities that enable community members to talk
more openly about HIV/AIDS
•Organize cooperative support activities
•Promote and support community care for children without family support
Contd.
ENSURING ACCESS TO ESSENTIAL SERVICES

• Increase school enrolment and attendance

• Ensure birth registration for all children
• Provide basic health and nutrition services
• Improve access to safe water and sanitation
• Ensure that judicial systems protect vulnerable children
• Ensure placement services for children without family care
• Strengthen local planning and action

ENSURE THAT GOVERNMENTS PROTECT THE MOST

VULNERABLE CHILDREN

• Adopt national policies, strategies and action plans

• Enhance government capacity
• Ensure that resources reach communities
• Develop and enforce a supportive legislative framework
• Establish mechanisms to ensure information exchange and collaboration of
efforts

Contd.
 AN ENABLING ENVIRONMENT: THE
LEGISLATIVE FRAMEWORK
Legislation that supports the care and protection of orphans and vulnerable children
includes:
• Prohibiting discrimination in health care, schools, employment or other areas based on
actual or presumed HIV status
• Providing placement and guardianship for children who lack adequate adult care
• Ensuring women’s rights to own property and hold jobs
• Protecting the inheritance rights of orphans and widows
• Protecting children against abuse, neglect and sexual contact with adults
• Eliminating the worst forms of child labour
• Eliminating barriers that keep the poorest children from attending school or accessing
health care
• Protecting children who live on the streets
• Developing policies that encourage and support family-based placements for children
without adequate family care
• Establishing specific standards for alternative care of children without family
support,including steps to prevent separation of siblings; first preference for family-based
placements; use of institutional placements as a last resort and temporary measure; and
the involvement of children in decisions regarding their placements
 Launch of CABA Scheme
Indicator Number
Male Female Total

Number of HIV infected children included in CABA line list 46 19 65

Number of HIV affected children included in CABA line list 263 247 510

Total number of infected + affected children included in CABA line 309 266 580
list

Number of orphan HIV infected children Maternal Orphan 01 01 02

included in CABA line list (35)

Paternal Orphan 15 08 23
Double Orphan 08 02 10
Number of orphan HIV affected children Maternal Orphan 12 06 18
included in CABA line list (141)

Paternal Orphan 52 51 103

Double Orphan 09 11 20
 Services Under CABA Schemes
Mainstreaming – ensuring provision of all existing Govt schemes to OVC.
For this cooperation is sought from :
a. Linkage of Infected Children to Care, Support & Treatment.
b. Education department- for free education, mid day meal, free books,
stationary & dress to OVC Also instructions may be given to remove
stigma & discrimination against children living with HIV/AIDS for their
admission in Govt Schools.
c. Department of Social Welfare & Women & Child - for linkage of OVC
affected / infected by HIV/AIDS with ICDS programme for
supplementary nutrition etc, provision of old age pension, widow
pension, financial assistance to disabled OVC, alternative care etc
d. Health & Family Welfare- Provision of Rashtriya Swasthaya Bima
Yojana & Janshree Bima Yojana cover to BPL families affected by
HIV/AIDS, Issue of health card for free treatment in Pvt. hospitals
recognized by Delhi Govt.
e. Department of Food & Civil Supplies- for issue of BPL Card
 Proposal for Monthly Allowance to HIV/AIDS Affected /
Infected Orphan Vulnerable Children

• Patients suffering from leprosy are provided with rs.

1800/pm assistance by Department of Social Welfare,
GNCTD
• Department of Women & Child Department & Donor
agencies may consider @ Rs.1500 pm/ per OVC for
nutritional & other supports involved in the care of OVC.
Number of beneficiaries- 427 OVC.
• Benefit of any other welfare scheme such as old age
pension, widow pension etc may also be allowed to
continue.
Proposal for Setting up a Composite Facility for
OVC
• There is no provision of residential care for OVC under
NACP III.
•Department of Women & Child & Donor agencies may
consider setting up a composite facility through NGO for
Institution care of 37 OVC. They are presently living with
grandparents (28), elder siblings (3) or extended family (6).
• These children will be without care of an adult after death
for their caregiver grandparents, elder siblings are finding it
difficult to provide proper care and chances of exploitation
exist in extended families.
• Estimated expenditure involved is Rs.4000 / child
/month for permanent care of OVC in NCR region
inclusive of everything (nutrition, health care, transportation
to school & health facilities, infrastructure & manpower,
clothing, education & psychosocial support etc).