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
Oct 27, 2014
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.
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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
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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 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