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Tracing the year long journey of MDACS supported Redressal Cell at ART centers
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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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initiative that is primarily managed by PLHA with a sole focus on PLHA and improving their quality of life through support services.
May 2011
June 2011
June 2011
July 2011
August 2011
September 2011
September 2012
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
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
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Medical Support
26
158
19
Legal Support
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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.
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
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
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109 99 18 226 87
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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
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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
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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