Smaller Agencies and the HIV Continuum of Care

Sharon Chamberlain

Always fragile, frequently frayed, and never comprehensive enough, the HIV safety net developed through 28 years of advocacy is facing grave threats from the recession and state budget cuts.

Last week, Rewire partnered with the Community HIV/AIDS
Mobilization Project (CHAMP), the HIV Prevention Justice Alliance, and
AIDS Foundation of Chicago, among others, to cover the National HIV Prevention Conference, and
to raise issues about the domestic AIDS crisis.  With this and other articles, we will continue to offer coverage on all aspects of the domestic and global AIDS epidemic.

Always fragile, frequently frayed, and never comprehensive enough, the HIV medical and social service safety net developed through 28 years of advocacy is facing its gravest threat – the recession of 2008-2009 and its impact on state budgets and HIV funding.

Kevin Tillman tested positive for HIV in 1989. In this latest installment of the “Our Reality” video series he recalls his experience living through first years of the epidemic.

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As funders and providers evaluate priorities, we offer the perspective of a smaller agency to help guide the discussion of agencies as they plan services and consider collaborations or closings.

By many measures, Common Ground is typical of the type of agencies providing services to people living with HIV. Our self-understanding is grassroots, our staff is 18, the budget is $1.1 million, and we serve about 250 clients.

By any measure, we are an essential provider: the only comprehensive HIV service agency serving the entire west side of Los Angles County. We have a perspective that seeks out a voice.  Inspired by an unconditional commitment to people living with HIV and driven by passion and outrage, small agencies were the first responders in the early days of the epidemic. We argue that the values operationalized by those early agencies should be used to evaluate plans for leaner, more efficient services today.

Three service values from the epidemic’s early days remain of abiding importance: being community-based, client-centered, and cost-effective. New service matrices need to meet each of these criteria if they really want to respond to people living with HIV.

Part two of the Kevin Tillman video.

Community-based means actively involving people living with HIV in decision-making. It means listening before speaking. It balances advocacy and planning. It explores the relationship between the HIV-specific and general life needs of clients. It places services in the intersection of the daily routines of people.

Client-centered means that barriers to services like language, excessive paperwork, and multiple appointments be avoided at all costs. Technology has great potential for extending service provision. A new measure of client-centeredness may be the provision of online and phone services and access to the terminals and telephone to use them.
Cost-effectiveness means finding economies of scale. It avoids unnecessary duplication of services, or promotes redundancy when it benefits clients. It values fundraising not burdened with the significant overhead of major events.

Maintaining service options for people with HIV is a high value. A robust continuum of outstanding social and medical services offered by both small and large agencies provides consumers with the greatest incentive to seek out and stay in service and achieve optimal medical outcomes.

To advance the goals of providing community-based, client-centered, and cost-effective services in a robust continuum, we propose a new dialogue to assess and evaluate the merits of forming an alliance of HIV providers.
An effective alliance of providers could maintain that essential core value are maintained and the uniqueness of each agency and the community it represents be respected. The alliance could establish best practices for service provision by local providers. It could form a co-op to purchase health and dental benefits for agency staff of agencies, and develop innovative, gainful national fundraising efforts.

The medical urgency of the epidemic’s early days made discussion of a regional or national approach to service provision impossible. The economic urgency of today’s world may make it essential.

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