Building Linkages and Referrals: A Step towards Sustainability: Alliance India’s Experience

This "Good Practice" report from India HIV/AIDS Alliance discusses linkages between service providers and clients in providing health care to people living with HIV (PLHIV). It describes the work of the CHAHA programme in its attempts to reach the most-in-need children of HIV-affected families in a care and support programme for children in Andhra Pradesh, Tamil Nadu, Manipur, and Maharashtra states in India. Linkages are described in the document as: "The connection facilitated by an NGO [non-governmental organisation] worker between a service provider and a client is defined as a linkage. The service provider could be a local, government or private hospital, another NGO, a network, a government department, a local business or even another project within the same NGO. The client here refers to the community of children, women and families affected/living with HIV....While we may reach out to the most-in-need children there are many who may get left behind, owing to the fact that we are working in states most affected by the epidemic. This is where linkages lead to inclusivity and an alternative to direct provision of services which only addresses the immediate needs and has a shelf-life." The linking of families to antiretroviral therapy (ART) that can prolong the lives and health of parents and children can be enhanced by ensuring adherence to the therapy and connecting to nutrition sources like public distribution systems and the anganwadi system of healthworker support of early childhood nutrition, for example. As stated here, "[b]uilding and using linkages help the child and his/her family develop the confidence to re-enter society."

The CHAHA strategy for referrals and linkages includes using "medical services like ART, registration in [a] PPTCT [Prevention Of Parent to Child Transmission] programme, [and] treatment for opportunistic infections. This practice works towards optimal utilisation of the existing services available and develops services only in those areas where the gaps are identified.... [I]n the preparatory phase of CHAHA, all the Sub Sub-Recipients [SSRs] embarked on a task of mapping the essential services (health and education) and government schemes (social-security and livelihood related) and developed a directory for linking the communities they identify, with longer-term sustainable measures. The directory is periodically updated and the frontline force of over 350 outreach workers constantly works towards facilitating access to these services. CHAHA’s programme framework involves multiple visits to all the families and children covered in the programme. The families’ needs are periodically assessed and analysed against the existing package of services in CHAHA and government schemes and services....The outreach workers accompany the family along with the child for any medical referrals to the ICTC [integrated counselling and testing centre], CD4 [cluster of differentiation 4 - a type of HIV test] testing centre, ART centre or Primary Health Centre (PHC) for any other ailments and also for accessing Government’s social security schemes till the time the family itself ...develop[s] the confidence to do it on its own."

In order to create a conducive environment for medical referrals, SSRs make initial visits to these facilities, meet with the medical superintendent or doctor-in-charge to explain the work of CHAHA, and request help both in identification of need and referral support. If needed, advocacy is done at district, state, and national levels to obtain this kind of agreement. A second meeting is held with ICTC counsellors to establish referral and identification methodologies and confidentiality procedures; and, in most cases, when the counsellor is convinced that confidentiality will be maintained, the contact list of people who are living with HIV is provided. Exchange of information at the grassroots level, where the ICTC counsellor can share information without fear of confidentiality being breached, is supported by state and national organisations to ensure the appropriate design and implementation of confidential information exchange. Relationships are maintained through visits and close coordination until linkages are systematic and able to survive staff turnover.

"The second set of systemic linkage that is being created is with the grassroot level health workers, the Auxiliary Nurse Midwife (ANM) and the Anganwadi worker (AWW). These linkages are developed in a similar way as above... Both these grassroots’ health workers have proved instrumental in referring the outreach worker to families who may be HIV positive. These families are then linked to Prevention of Parent to Child Transmission (PPTCT) services, and weight monitoring and follow-up is done through the data generated by the Anganwadi Workers."

The programme also builds linkages with social service agencies that work on income generation for families, pensions, school enrolment, housing, and hygiene. "The biggest barrier in linking families to government schemes is the lack of basic essential documents like ration card, birth and death certificate....The other set of linkages is with local hospitals, other local NGOs, local businesses, private doctors, private schools, trade unions and the entire socio-economic milieu in which the family stays." Outreach workers are encouraged to cultivate these linkages and tap their resources when it is possible.

Among the key factors for promoting linkages are the following:

• Mapping, documenting, and creating community awareness around various services and schemes
  
• Creating programme frameworks that look beyond service delivery
  
• Creating a highly motivated team with a positive attitude
  
• Providing ongoing capacity building to outreach workers and implementing NGOs
  
• Creating institutional mechanisms locally to facilitate linkages

Inhibiting factors include the complexity and time consumption of creating and maintaining linkages, the lack of essential documents, such as birth registration or identification, to access services, and the stigma and discrimination encountered, coupled with a lack of experience navigating public services.