Project Parivartan

1

PROJECT

PARIVARTAN An Information Education Communication

(IEC), MDACS Initiative

Tracing the year long journey of MDACS

supported Redressal Cell at ART centers

Developed by

Mumbai Districts AIDS Control Society

2012

2

Conceptualization of Project Parivartan 03

need assessment at ART centers

Setting up Project Parivartan 03

stakeholder discussions

setting objectives

Tracing the year long journey 04

chronological graph

project parivartan team - structure

Milestones 05

improving communication and providing quality service

providing in-referral & out-referral services

Stories of Change 07

one step at a time

challenging stigma & discrimination in the school setting

fighting against gendered HIV discrimination

Social Protection Initiative by MDACS 10

Acknowledgements 10

*Please note that all images used in this document are for representative purpose only

*Document developed by Mumbai Districts AIDS Control Society

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CONCEPTION OF PROJECT

PARIVARTAN

On 7th September, 2012, ‘Project

Parivartan’, the MDACS supported

Redressal Cell at ART Centres completed

its one year of establishment.

A year ago, MDACS conducted a needs

assessment review at each of its ART

centres and observed a need for an

improved and approachable atmosphere

between the public service provider and

service receiver. There was also a need for

bridging the communication gap between

ART Center’s staff and PLHIV registered at

ART centres. Clients who visit ART centres

are more than often anxious, worried due

to the psychological impact that the

infection has on them and at times they

are even physically debilitated due

weakness and fatigue. In such conditions, a

stress free health service experience can

be extremely uplifting and encouraging for

their morale.

Thus, Project Parivartan was born out of a

need to provide quality services to those

infected and affected by HIV/AIDS and

work towards zero stigma and

discrimination at health care centers and

other related areas.

NACO has introduced the concept of

‘Redressal Cell’ and has even implemented

a grievance mechanism at the state level,

wherein a Grievance Redressal committee

has been constituted to routinely review

functioning of the ART Centres (NACO

2011). However Mumbai is only city that

has received specific instructions to

execute the Redressal Cell in each of its 10

ART centers. Although supported by

MDACS, Project Parivartan is a unique

initiative that is primarily managed by

PLHA with a sole focus on PLHA and

improving their quality of life through

support services.

SETTING UP PROJECT

PARIVARTAN

Prior to setting up a redressal cell

committee, framework and guidelines; key

stakeholders were approached and the

concept of redressal cell was discussed.

These stakeholders included MDACS

officers, ART I/C and related MCGM

hospital authorities and PLHV volunteers.

These discussions bought to light additional

grievances that could be resolved by a

redressal cell, only making the resolve to

start this initiative stronger.

Once all the key stakeholders were at a

convergence of agreement, the decision to

operationalize a redressal cell was

approved and thus ‘Project Parivartan’

came into existence. Objectives for this

initiative were unanimously agreed upon:

Improving communication between

ART staff and clients

Educating PLHIV to access ART and

other support services; also

motivating them to access their

rights

Sensitizing PLHIV for disclosing their

status to their partner/faithful

family member

Involving more and more PLHIV

Volunteers by providing various

training to become a part of peers

for care and support program

4

TRACING THE YEAR LONG JOURNEY

Needs Assessment at ART

Centers

Conceptualization of Project Parivartan

Formation of Objectives, Working Committee & Guidelines for Action

Training of Working Committee, PLHIV volunteers

and other stakeholders

Feasibility Discussion with Key Stakeholders

Operationalizing Project Parivartan

May 2011

June 2011

June 2011

July 2011

August 2011

September 2011

Running at all 10 ART

centers with 22 volunteers September 2012

Project Parivartan’s managerial setup consists of officers from MDACS, followed by the ART Center

Nodal Officer, Redressal Cell Coordinator, Redressal Cell Committee Members and Volunteers.

The Redressal cell committee consists of a Redresser Cell Officer, 1 Care coordinator, 1 Medical

Officer/Nodal Officer, 1 Counselor, 2 PLHIV Volunteers and 1 NGO representative.

There are a total of 10 MDACS supported ART centers in the city and the redressal cell at each ART

center has 2 or more PLHIV volunteers, who provide assistance 6 days a week.

5

MILESTONES

The Project Parivartan team performs two of the following broad tasks:

The first task focuses on improving communication at the ART center and the

overall quality of services provided to the client including:

Assisting clients in administrative work

Providing counseling (one-to-one, group, peer) to the client post the ART Counseling.

This counseling is targeted at psychological issues and aimed towards bringing about

mental stability to the client.

Resolving minor disputes on the spot, bridging between ART center staff and client;

resolving client grievances through the mechanism of a redressal box

The second task focuses on referring PLHIV to other Support Services including:

1. In-Referral/Facilitation (within the ART Center Hospital)

Facilitating the process for CD4 count assessment and other routine tests

Accompanied referral to Hospital O.P.Ds and for other services including RNTCP and

STI

3107 2310

1190

One to one Counseling Group Counseling Peer Counseling

Number of Cases for which Counseling was provided by the Redressal Cell Volunteers from September 2011 to August 2012

6745

3521

430 21

CD4 Count Routine Tests Referred for RNTCP Referred for STI

Number of Cases for which In-Referral Services were provided by the Redressal Cell Volunteers from September 2011 to August 2012

6

2. Out-Referral: Referrals made outside the ART center Hospital various for Social

Protection services (total number of 1295 referrals have been made from September

2011 to August 2012, details of which are illustrated in the images given below)

Referring clients to government social schemes, DIC, CCC

Referring them to N.G.Os, hospices, Educational Trust, Charitable Trust, Orphanage

for educational, nutritional and livelihood based support

Educational Support

224

Child Support

37

Nutritional Support

245

Community Care Centres

26

Financial Support (through

benefactors) & Job

19

Marriage

24

Assistance Schemes

(SGNY, BPL Card,

Antyodaya Scheme,

Pension Plan)

550

Medical Support

158

Legal Support

12

7

STORIES OF CHANGE

This segment describes 3 success stories wherein PLHIV have been able to fight

against challenges at their household, work and public spheres due to the timely

intervention and support provided by Project Parivartan. hese stories stand out as

evidence of the tireless efforts that the Project Parivartan team puts into their

mission of improving the quality of life of PLHIV in the city and contributing towards

their overall wellbeing.

One Step at a Time

Shekhar (name changed) is currently taking ART from Sion Adult ART

centre. On coming in contact with the redressal cell volunteers, he

shared his predicament of being jobless which coupled with his

disability made life extremely difficult for him.

The redressal cell volunteers immediately contacted a city based not-

for-profit organization that works for upliftment of handicapped

individuals. The organization supports its beneficiaries through travel

assistance (Bus/Train pass), providing loans for small businesses,

giving jobs at their centre and also providing artificial legs, wooden

physical support, wheel chair etc for those in need.

After taking an appointment with officials from the foundation, the

volunteers accompanied Shekhar for the meeting and helped him

prepare the required application and documents. They also

personally spoke with the officials in order to make Shekhar’s case

stronger. Another meeting later, Shekhar started receiving financial

(Rs.500/- monthly to each) and nutritional support from the

foundation. In due time, the foundation also provided Shekhar with

an artificial leg.

Thanks to the support rendered by the redressal cell volunteers and

the foundation, Shekhar is all set to start his life afresh with his new

found confidence. He is now on the lookout for a job and is

seemingly assertive about getting one.

8

13 year old Sneha (name changed) is on ART from a city based pediatric ART

centre. Having lost both her parents to AIDS, she now lives with her sister and

their ailing grandparents. Although her 21 year old sister is employed, their

financial condition continues to remain poor. Due to routine tests, ART checkups

and ill health; Sneha would sometimes report late to school or even miss classes.

Her teachers would often rebuke her for her late coming and absenteeism.

Sneha said,

“The day I carried my ART green card to show the school teacher and

explain my condition to her, I started facing even more problems. My

classmates saw the ART card and since then nobody would share my

bench. Next day one of school teachers told me to sit at last bench in the

corner row. At school, nobody talks with me, my classmate refuse to play

with me telling me that I’m sick person, even after school nobody would

sit with me in BEST bus on the way back home.”

Sneha’s sister and grandmother shared her problem with the Sion ART Centre

Redressal Cell Volunteer in June 2012; who then met Sneha and counseled her. The

volunteers learned that the discrimination had reached such a level despite

Sneha’s grandparent’s intervention with the school staff and they were on the

verge of removing Sneha from the school. After addressing concerns at the

household level, the Redressal cell volunteers approached the school principal and

staff and discussed this issue at great length. At first the school staff denied all

allegations of discrimination and shared that there was not much that they could

do to help the situation.

After much deliberation, the Redressal Cell volunteers then suggested conduct of

HIV/AIDS training and sensitization workshop for school staff and students (8th to

10th grade), to which the school agreed. Through the volunteers’ continuous

follow-ups with the School and MDACS (for technical support and resource persons

for training), a training workshop was finally held in the school in September 2012.

The workshop may just be the first step towards Sneha’s redemption of her normal

life back but the redressal cell volunteers are confident of normalizing HIV/AIDS in

that school setting.

CHALLENGING

Stigma & Discrimination in the School Setting

9

Shweta (name changed) got to know her HIV positive status when she registered under a

PPTCT during her pregnancy. She now has a daughter who is 9 months old and both are

registered at the Sion ART Center. However her positive status was not all the trouble

that she had to deal with. She had first come into contact with a redressal cell volunteer

just weeks after her delivery. Seeing that Shweta was extremely depressed, the volunteer

probed further and got to understand the bigger story behind Shweta’s sadness.

Originally from Dharavi, Shweta was married into a home in Thane. Although she came

from a poor family, she was literate and had completed her high school education.

Despite her husband’s family being financially well settled, she was constantly asked to

get dowry from her maiden home. To add to this torture, her retired father-in-law would

harass her by trying to make sexual advances whenever no one was at home. She tried to

take this up with her husband and mother-in-law but in vain; no one listened to her

complaint and deemed it as trivial. She even forgave her husband after realizing that he

was HIV positive and had given her the infection.

However on knowing that Shweta had given birth to a girl child, her husband and in-laws

cut all ties with her, leaving her all alone to fend for her new born child and herself. Apart

from the child’s nutrition, she now had to take extra care of herself as well due to the HIV

infection. Shweta was shattered. In was at this stage of her life, when the redressal cell

volunteers came to her rescue.

Being an intense case, the Redressal Cell Coordinator was informed and he immediately

took personal interest in this case. Even after several counseling sessions, Shweta

continued to remain depressed as she wanted to live with her husband and wanted her

child to grow under the influence of both the parents. The redressal cell coordinator

invited the husband for a discussion but he bluntly refused.

After rounds of counseling, Shweta was finally convinced that it was time she took control

of her own life and that of her child’s. She decided to prepare herself to become

financially self-dependent. The redressal cell team then connected Shweta to Network

for NMP+ where there happened to be a vacancy for computer data entry at NMP+.

Redressal cell volunteers helped Shweta with the job application.

Today Shweta is working in NMP+ as a computer data operator and is preparing herself to

fight against the injustice displaced upon her and her child by her husband and her in-

laws. She has decided to take legal action against her in laws and husband if she does get

her rightful place in her marital home soon.

FIGHTING AGAINST Gendered HIV Discrimination

10

Evidence indicates that HIV households

struggle and cope with risks by

reducing consumption on essential

items including food, borrowing from

moneylenders (often at very high

interest rates), extended hours of work

by women and children or a complete

dependence on other family members

or NGOs (TISS-UNDP 2011). It is also

evident that HIV widow households

with lower incomes are economically

worse off than other HIV households

with lower incomes, poorer living

conditions, fewer amenities at home

with higher borrowings or asset

liquidation. The average HIV household

income is lower by 34% than non HIV

households (UNDP NACO NCAER 2006).

Close to 40% of adults living with HIV,

in the country are women, and of

whom 43% live alone without any kind

of assets and support systems. The

social and economic impact is also

more pronounced on women and

households headed by HIV widows -

whether they are themselves living

with HIV or not.

Extending social protection to PLHIVs

through the State led poverty

alleviation programmes; to cope with

the risks is receiving attention both at

the global and national level. Social

Protection refers to public

interventions to assist individuals,

households and communities to manage

the risk of HIV/AIDS better and that

provide support to the critically poor.

Mumbai Districts AIDS Control Society

(MDACS) has been implementing social

protection initiatives for PLHIV since its

establishment (please check for

correctness) as an integral part of its

treatment and care programme.

In September 2011, MDACS

operationalized ‘Project Parivartan’, in

each of the 9 ART centers in the city.

This cell aims to improve

communication between ART staff and

clients thus improving the quality of

service provided.

Apart from improved communication

and assistance at the ART center,

Project Parivartan volunteers also take

it upon themselves to inform PLHIV

about various government social

protection schemes and other services;

guide them through relevant

procedures and ensure that required

services are availed.

Review of MDACS supported Social Protection Initiatives for PLHIV

January to August 2012

11

Some of the key social protection schemes to which PLHIV were referred to

(through MDACS programs from January to August 2012) are:

No Name of Social Protection Schemes Number of Referrals

1. Legislative forum on AIDS

For political Mandate 7

2. Nutritional Care

Integrated Child Development Scheme 109

Antyodaya Anna Yojana 99

Palanhar 18

Sub Total 226

3. Legal AID

Legal assistance provided through NGO’s ( Lawyers Collective & ICHRL)

87

4. Social Security

Widow Pension 87

Pension 38

Insurance 79

Sub Total 204

5. Livelihood

BPL status to PLHIV 112

Sewing Machine Distribution 17

Sub Total 129

6. Safe Environment for PLHA (women and Children)

Orphanage for CLHIV 12

Short Stay Home for Women 7

Sub Total 19

7. Grievance redressal mechanism

District level - Project Parivartan running in 9 ART Centers with a total of 22 volunteers

8. Assistance Schemes

Sanjay Gandhi Niradhar Yojana (SGNY) 390

Bal Sangopan Yojana 706

Sub Total 1096

9. Other Non-Government Social Protection Services Referrals made by Project Parivartan Volunteers (To NGO’s/Trusts)

Educational Support for children through NGOs & Trusts 833

Medical Support 23

Financial/Job Support 26

Marriage 11

Nutritional Support 51

Sub Total 944

Total number of referrals made to social protections

schemes and services

2712

12

A total of 2712 referrals to social protection schemes have been made since the

start of 2012.

From the figures stated above, it is evident that majority of the referrals under social

protection services are being made for government assistance schemes like the Sanjay

Gandhi Niradhar Yojana, Bal Sangopan Yojana and Nutritional schemes including ICDS

and Antyodaya Anna Yojana; followed by referrals made by Project Parivartan

Volunteers to various other social protection services as provided by NGO’s & trusts.

Through its intervention based experiences, MDACS understands the critical need for

social protection services for the PLHA and will continue to strive to build an

enabling environment where PLHIV do not fear about disclosure and discrimination

while accessing schemes; and to create greater awareness among PLHIV not just

about the schemes and application procedures, but to be assertive to demand services

and benefits from the service delivery system so that they become more accountable

to the users.

7

226

87

204

129

19

1096

994

Legal Forum for AIDS

Nutritional Care

Legal Aid

Social Security

Livelihood

Safe Environment for PLHA (Women andChild)

SGNY & Bal Sangopan Yojana

Other non-governmental social protetcionservices

13

Reason for Effective Functioning: Constant Support from Multiple

Stakeholders

The smooth functioning of Project Parivartan has to be attributed to the constant support

provided by multiple stakeholders.

1. 1. The Administration at the Medical Colleges has been a huge support to the setting

up of Project Parivartan and smooth implementation.

2.

3. 2. The MDACS management has played a role in taking initiative to launch such an

effective project.

4.

5. 3. The Information Education Communication division of MDACS have envisioned the

need for this program and successfully implemented the same by integration of

resources.

6.

7. 4. The Care & Support division for drawing support from the ART center resources.

5. The Basic Services Division at MDACS for adding value at every step and

strengthening the program thereby creating an ownership for Project Parivartan within

the Public Health system.

6. The Positive Community for working so closely with the Government system and

supporting us at every step.

7. The NGOs (DICs and others) that provide social protection to the community

This is