Children with HIV

[Guest guest]

Children with HIV

Ashish Sen, VOICES

" Amita and Rashmi argue about who will wear the dupatta. Ashok , Riyaz and

Chinku are immersed in discussing India's fortunes against Australia in the

Kolkata test cricket match . Nandini takes my hand and demands a ride in the

car. Energetic shouts and laughter from the other children resonate in the

background while I defer to Nandini's wishes - a shade too quickly . As I walk

to the car , hand in hand with the animated six year old ,I can't help but feel

that appearances are deceptive … "

Amita, Rashmi, Ashok, Bairam, Chinku and Nandini are six of the fourteen HIV

/AIDS positive children who are a part of the Freedom Foundation community

living in the outskirts of Bangalore . They are also orphans and have lost their

parents , (in many cases their siblings as well) to the AIDS scourge.

" When we talk of children with HIV/AIDS the fundamental flaw is that there is no

voice . What makes the flaw even greater is that there doesn't even seem to be

the identification of a need. " The concern comes from Ashok Rau, Executive

Trustee of Freedom Foundation a frontline HIV/AIDS care and support NGO. It is

also perhaps the only group which provides residential care to children who are

HIV positive.

If Rau's concern is legitimate, it is also an eye opener into the double speak

and the hypocrisy that characterises much of the ostensible crusade against the

disease. While millions of dollars have come into the country under the garb of

HIV/AIDS assistance , there has been hardly a whimper , leave alone gesture ,

meted out to children living with HIV/AIDS. A recent UN AIDS study carried out

in October/November 2000 pointed out that children with HIV/AIDS in India could

be anywhere between 2 and 2.5 lakhs . Rau is quick to point out that this is a

" gross understatement " .

" We are looking at very alarming figures and trends, " says Rau . Unfortunately

, there seems to be no evidence on the part of the state to even question the

implications that these statistics throw up . Notwithstanding the sharp rise in

the quantum of people who are HIV positive the official policy continues to be

overwhelmingly biased in favour of prevention rather than care and support . Rau

admits that the growth in statistics has perhaps brought about some degree of

change. But the crucial question is : whether this is too little and too late ?

" The government did not even look at care and support in the first phase (in

the nineties ) ….Now after considerable pushing and (after) the World Bank has

said that care and support is a good thing…20 per cent of the budget has been

allocated for care and support…..but it is still only 20 per cent. "

" The accent on prevention rather than care and support has, not surprisingly,

evoked brickbats from several quarters . The millions of dollars that flood the

country would seem to have provoked a mushrooming of NGOs working in the field

of HIV/AIDS prevention , but not achieved much else . In fact , many of these

NGOs have reportedly, " only existed on paper. " Others have been unable to

utilise a substantial quantum of the funds which they were allocated. This has,

in turn , raised questions about professionalism and accountability . But

underlying the gross lack of transparency , there is a human component which

demands reckoning with . As Rau questions , " what is the point of hammering

away at prevention when we do not have systems in place ? " Moreover, care and

support will mitigate any kind of prevention effort you are going to try…. "

Care and Support has remained the cornerstone of the Freedom Foundation wing

committed to HIV /AIDS infected people since its inception in 1993. " We got

into care and support when people said we were crazy to…. " reminisces Rau. " My

entire (motivation) came after I did my first awareness programme in 1990….3 men

came to me and admitted that they were vulnerable . They asked me where they

should go …. I did not know where to send them or what to do … "

Started by Ashok Rau , in 1993 as a centre to provide intensive and effective

treatment for chemical dependents , Freedom Foundation has come a long way . In

November 1995 , it initiated a 25 bed, short/long stay, day care centre for HIV

positive people . Today there are more than 500 clients using its services on a

daily basis, while the Care centre combines " out-patient " services with all its

units which consists of a 50 bed residential care unit which includes a 10 bed

hospice to house and care for terminally ill patients.

The Foundation has also grown in other ways . Based on a demand driven model ,

branches have opened in Bellary, Siruguppa, Mangalore Udipi, and two units at

Hyderabad. The Foundation has covered a wide spectrum of services, each care and

support units consists of a short/long stay home, full-fledged medical unit with

doctors and nurses round the clock , mini ICU, hospice, laboratory, component

for children, Legal cell VCT, adoption programmes and foster care, income

generation initiatives etc. all this is apart from the various prevention,

education, sensititation, and training programmes.

The Foundations commitment is to also provide free antiretroviral tratment to

all children and abandoned positive mothers from the poorest of poor. Mr. Rau's

journey has been amazing. He and his team have managed to do all this with out

the help of any core or principal funder.

" The Freedom Foundation is a result of a personal dream (which was further

influenced with the dream of an affected community)and inactive, simply put I

had to hock and sell all I had many years back to start , not that I had much to

begin with " Though from a couple of years back NACO/KSAPS have on paper decided

to fund 10 people for OI management in all its units. Says Mr. Rau " The problem

with Government funding is that there are these long unexplainable delays in

processing and releasing of funds, for example it is more than 6months since we

have got any money from the State Government, even though they say that they are

funding us, the problem is further compounded with officers being posted that

have no understanding of the seriousness of the issue and hence have no vision

or goal "

The National Aids Control Organisation has recognised the Freedom Foundation

model of Care , as " the ideal, low cost, community based model . " Reportedly ,

it is the first Comprehensive and holistic HIV/AIDS home in the country . These

, however are not enough for the Freedom Foundation team . As Rau points out ,

there are no more than eight to ten centres across the country which provide

residential care to people with HIV/AIDS . Put differently, this means that only

about a thousand affected people can avail of these facilities . This is

shocking , given the fact that the ordinary citizen is constantly being

bombarded by the fact that India is sitting on an AIDS time bomb .

Moreover , despite NACO's blessings , care and support continue to remain

outside the centre of the HIV/AIDS strategy . This is where the rub lies . There

is no tangible demonstration by the State to undertake responsibility for

people, leave alone children who are HIV positive.

" The children's issue came up almost in the same way as how we got into care and

support …We had the first child who was born here (in 1995) to a mother who was

positive …..The child did not make it , and died after six months. During those

six months we went into a very intense process trying to figure out if this

child was positive, how and where and when we could process things to ensure

that the child's needs are met …..There was nothing to be found…

" We ran helter skelter to try and find an organisation which would address the

issue …there wasn't a single one in the country . We realised then that we were

going to have many more people coming to us we anticipated a similar response

……Sure enough we soon had the first family coming to us where both parents and

children were affected ….

" The increase in the number of HIV positive children who required support led

to the formation of the residential care centre in 2000 . Today , the Foundation

in Bangalore houses 114 children ranging from 18 months to 14 years ' out of

which there are 17 orphans. If Hyderabad and Bellary and the other units are

brought into the picture the figure will almost double by the end of March ,

says Rau. . But he clarifies that in terms of support the number is 196

children. In doing so, he categorically affirms that Freedom Foundation is not a

one stop shop and that HIV/AIDS must be viewed as a societal issue … However

poor the environment may be from where the child comes ,fundamentally we have no

right to disturb it . (So) we try and dialogue with the parent …Is there someone

in the family who can help and who can be contacted… but when there are definite

gaps , when nobody has come forward , the Foundation steps in . "

" It has never been easy for Freedom Foundation to address this issue from a

practical and financial point of view. " But then ,as Rau points out , there is

also an emotional perspective .. " It really boils down to seeing this child and

trying to imagine what s/he will go through….. "

The centre for HIV positive children has brought with it many challenges . " We

still don't have societal acceptance and permissibility in saying that it is all

right to normalise these children's lives . " A case in point is education . It

took Rau and the Freedom Foundation team exactly a year and eight months to get

the children admitted into schools . " I don't know how many schools we went

through before a school said ok . Today , we have two schools that admit our

children …. " Rau is upbeat about the fact that the children have not been

admitted on a confidentiality basis . " The schools know that these are positive

children . Despite this, they have come forward . "

While Freedom Foundation is grateful to these schools , it hasn't entirely been

a cakewalk . " In one school somebody noticed the autorickshaw which brought

these children to school and which had our name ….We got a call from the school

asking us not to send the children , because the parents of some children were

objecting …. It was a very disappointing day for us …but the entire team met and

(initiated) a meeting between parents and teachers to discuss the issue. The

next day the children went back to the same school . To us that was a major

achievement . We are so grateful to those parents and teachers…. "

Another issue of concern was communication within the group. The children come

from different parts of the country . " They had lived within a certain kind of

space , had already developed certain beliefs. " In order to partly overcome

this barrier all the children have learnt Kannada and Hindi . At the same time,

the Foundation started an informal education component which prepares the " child

for a formal school. " It also answers a related question , " how does a Marathi

speaking child study in a Kannada medium school ? "

The quest to provide normalcy raised other challenges . Apart from education ,

we need to " ensure that these children don't really become the HIV positive

children of Freedom Foundation , but are HIV positive children of society and

are a part of society . " This started a process of identifying other avenues .

It is amazing to see that today these children go to dance classes with other

children , enjoy outings with other children…. "

Freedom Foundation is also on the threshold of starting a children's learning

centre which will offer HIV positive children " the very best of Information

Technology . NIIT has come up with a computer package very specifically for

these children . Significantly , the centre will " open its doors to other, so

called normal children. "

Side by side with the efforts to mainstream are other fundamental questions of

life and death . How do these children reckon with their illness and their

encounter with death ? Should children be exposed to such trauma? While there

are no easy answers, Rau describes a " very real side " to the issue . " When the

first child was in hospital , I had three children come up and say we want to go

to the hospital . When (one of the children) recently passed away , the children

came up and said we want to come to the cemetry… From a societal point of view

it is not done…but when you see a family within a family demanding a fundamental

right …you need to acknowledge it . "

In such a scenario , counselling assumes additional significance. There is a

tremendous amount of therapeutic work which is carried out . But even here Rau's

experiences substantiate that in more ways than one the child is the father of

the man . " When a child recently passed away, there were various things the

children got themselves into therapeutically - as apart of their own grieving

process. … Besides these children display a maturity far beyond their years .

Many of them know they are affected…. " While the Freedom Foundation model has

tangibly demonstrated the need for a care centered model where children play a

crucial role , there seems to be no dent made at the policy level . As Rau

affirms , this calls for a drastic change in how the HIV/AIDS issue is perceived

in the country .Mr. Rau is today considered as the one of the most compassionate

and leading activist on AIDS and Substance Abuse related issues. Mr. Rau and his

organisation have also been recognised as the !

frontrunners in the fight against AIDS and Substance Abuse Mr. Rau was recently

conferred the first Commonwealth Award for action on HIV/AIDS, he is also the

recipient of the prestigious US based Ashok fellowship award for social

entruprenership. UNAIDS has released a case study of The Freedom Foundation as a

best practice and center of excellence. Even though there has been so much

achievements, funders and donors are not very interested. Mr. Rau adds that

" The vision of The Freedom Foundation is bring in a heightened sense of

responsibility between Society and HIV/AIDS/Substance Abuse, even though we now

have a massive budget of 1.5 cores it is largely met by society at large, like I

always say , thousands of people support The Freedom Foundation "

AIDS needs to be viewed as a Development issue and not as " somebody else's

business. " Consider his argument :

First , the increase in the number of HIV positive children will result the

inability of traditional models of surrogate support care to accommodate them .

Freedom Foundation's experience with children has already exemplified the

" inability of poor communities to absorb HIV /AIDS children into informal set up

without formal support . "

At the same time , unless strategies to ensure the rights of children with

HIV/AIDS are developed , these children will be forced into poverty and high

risk activities like prostitution etc. In the current context , an infected

orphaned child is unlikely to inherit his or her parents assets. More like s/he

will be vulnerable to homelessness.

The family structure is likely to change with the spread of HIV/AIDS . A

generation is likely to be wiped out As the North East has witnessed the burden

will fall on the grandparents . Or there will be more child headed households .

Both scenarios are more prone to poverty.

This co- relation between AIDS and poverty is daunting . From a vulnerable child

to a vulnerable family to a vulnerable community - the vicious circle would

clearly place an inordinate pressure both on society and the government . A care

centered model could make the crucial difference . But for this to happen we

need to get back to basics . The State needs to take the first step by

acknowledging and demonstrating its responsibility and support to the growing

number of HIV/AIDS children and adults in the country. Will it oblige ?

- Ashish Sen

__________________________