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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


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Conceptualization of Project Parivartan need assessment at ART centers

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Setting up Project Parivartan stakeholder discussions

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Contents

setting objectives

Tracing the year long journey chronological graph project parivartan team - structure

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Milestones improving communication and providing quality service providing in-referral & out-referral services

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Stories of Change one step at a time challenging stigma & discrimination in the school setting fighting against gendered HIV discrimination

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Social Protection Initiative by MDACS Acknowledgements


*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 Centers 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 family member partner/faithful

Involving more and more PLHIV


Volunteers by providing various training to become a part of peers for care and support program 3

TRACING THE YEAR LONG JOURNEY


Needs Assessment at ART Centers

May 2011

June 2011

Conceptualization of Project Parivartan

June 2011

Feasibility Discussion with Key Stakeholders

July 2011

Formation of Objectives, Working Committee & Guidelines for Action

August 2011

Training of Working Committee, PLHIV volunteers and other stakeholders

September 2011

Operationalizing Project Parivartan

September 2012

Running at all 10 ART centers with 22 volunteers

Project Parivartans 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.

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

Number of Cases for which Counseling was provided by the Redressal Cell Volunteers from September 2011 to August 2012
3107 2310 1190

One to one Counseling

Group Counseling

Peer Counseling

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 Number of Cases for which In-Referral Services were provided by the Redressal Cell Volunteers from September 2011 to August 2012
6745 3521 430 CD4 Count Routine Tests Referred for RNTCP 21 Referred for STI

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

Nutritional Support

Child Support

245
Educational Support

37

224

Marriage

Community Care Centres

24
Medical Support

26

158

Financial Support (through benefactors) & Job

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Legal Support

Assistance Schemes (SGNY, BPL Card, Antyodaya Scheme, Pension Plan)

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550
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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 notfor-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 Shekhars 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.

CHALLENGING
Stigma & Discrimination in the School Setting
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 Im sick person, even after school nobody would sit with me in BEST bus on the way back home. Snehas 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 Snehas grandparents 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 (8 th 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 Snehas redemption of her normal life back but the redressal cell volunteers are confident of normalizing HIV/AIDS in that school setting. 8

FIGHTING AGAINST Gendered HIV Discrimination


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 Shwetas 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 husbands 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 childs 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 childs. 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 inlaws. 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.

Review of MDACS supported Social Protection Initiatives for PLHIV


January to August 2012

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.

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Some of the key social protection schemes to which PLHIV were referred to (through MDACS programs from January to August 2012) are:
No 1. Name of Social Protection Schemes Legislative forum on AIDS For political Mandate Nutritional Care Integrated Child Development Scheme Antyodaya Anna Yojana Palanhar Sub Total 3. Legal AID Legal assistance provided through NGOs ( Lawyers Collective & ICHRL) Social Security Widow Pension Pension Insurance Sub Total 5. Livelihood BPL status to PLHIV Sewing Machine Distribution Sub Total 6. Safe Environment for PLHA (women and Children) Orphanage for CLHIV Short Stay Home for Women Number of Referrals 7

2.

109 99 18 226 87

4.

87 38 79 204 112 17 129 12 7 19

7.

Sub Total Grievance redressal mechanism District level - Project Parivartan running in 9 ART Centers with a total of 22 volunteers Assistance Schemes Sanjay Gandhi Niradhar Yojana (SGNY) Bal Sangopan Yojana

8.

9.

390 706 Sub Total 1096 Other Non-Government Social Protection Services Referrals made by Project Parivartan Volunteers (To NGOs/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

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A total of 2712 referrals to social protection schemes have been made since the start of 2012.
Other non-governmental social protetcion services SGNY & Bal Sangopan Yojana Safe Environment for PLHA (Women and Child) Livelihood Social Security Legal Aid Nutritional Care Legal Forum for AIDS 7 87 226 19 129 204

994 1096

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 NGOs & 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 benets from the service delivery system so that they become more accountable to the users.

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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

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