East Bay HIV/STI Case Management Manual

Author: David Gonzalez

Broadly speaking, case management often involves wearing multiple hats; it is interdisciplinary, as each client has unique needs. A case manager might assist with disclosure of test results, navigating barriers at the pharmacy, insurance enrollment, data entry, care coordination between members of the client’s care team, providing direct services or referrals for legal aid, language interpretation, etc. 

On top of this, agencies are often organized differently, so positions that assist clients are distributed at different steps of care. For example, the person who helps a client enroll in health insurance might not be the same person who helps them enroll in ADAP (AIDS Drug Assistance Program). Moreover, how the case manager position is funded can change over time, which can impact which services are provided and by whom. 

Agencies may have different training requirements for case manager positions. For example, some hospitals might have nurse case managers, and others might require an advanced degree, while some will prioritize hiring individuals with relevant lived experience over those with a more traditional resume. Job titles also vary and may include medical versus non-medical case manager, care coordinator, patient advocate, and community health worker, to name a few. 

This section is meant to provide a cohesive sense of the scope of practice between these essential staff, under the expansive umbrella of case management. While not all parts might apply to each reader, it is our hope that most do. This manual is meant to provide a foundation, but it is also a living document. It is meant to evolve as the landscape of services for people living with HIV or at risk for HIV in Alameda and Contra Costa Counties continues to grow and change.

What is case management?

Case management is a medical and/or socioeconomic intervention. It seeks to improve access to essential services for individuals and/or communities that might otherwise find such services challenging to access due to barriers that emerge from social determinants of health (SDOH). 

The Centers for Disease Control and Prevention (CDC) defines SDOH as “nonmedical factors that influence health outcomes” (https://www.cdc.gov/about/priorities/why-is-addressing-sdoh-important.html). SDOH can include disability, substance use history, incarceration status/history, gender, sexual orientation, race/ethnicity, language, national origin, immigration status, religion, age, history of sex work, lack of housing, lack of transportation, and poverty. 

SDOH and their associated stigmas very often overlap. This creates new intersections of stigma and prejudice that worsen or add barriers to care that reinforce the lived experiences of oppression, violence, and trauma many persons are already carrying. Examples of barriers that arise from SDOH include: 

• health literature that is not written or translated in a client’s first language
• assumptions of sexual behavior based on heteronormative conceptions of gender and sexuality
• being dead-named and misgendered by frontline staff
• lacking reliable transportation to arrive at appointments on time
• being ineligible for programs or services due to immigration status
• inability to navigate systems due to anxiety or medical mistrust

Case management seeks to change how clients with experience of oppression, violence, and trauma engage with HIV prevention and care, while also addressing the systems that cause these experiences in the first place in marginalized communities.

By understanding the system/institution while working with the individual, case managers emphasize certain beliefs and principles while ensuring that clients have access to resources and essential services. These principles include firm belief in: 

• a client’s autonomy
• their ability to know themself and their body
• their ability to continually learn about their body, their mind, and their options to heal both
• their right to essential services such as housing, food, medical care, and overall safety

Held together, these beliefs (and services) form the foundation for client-centered or patient-centered care, trauma-informed care, and/or a strengths-based approach. 

Understanding the SDOH unique to each individual client allows case managers to hold their clients in unconditional positive regard. At the same time, within the framework of client-centered care, effective case management is an inherently collaborative process between the case manager and their client. Such collaboration requires an understanding that both case manager and client are fallible. Often this requires the case manager to offer grace to both their client and themself as they focus on the opportunity to learn from mistakes. It is equally as important and therapeutic to both case manager and client to celebrate wins and successes.

What is generally within the scope of a case manager’s role?

According to the Case Management Society of America:

“Case managers are healthcare professionals who serve as patient advocates, supporting, guiding and coordinating care for patients, families, and caregivers as they navigate their health and wellness journeys. They serve as the center of communication, connecting individuals/caregivers with members of the healthcare team and community to impact acute and chronic disease management and improve population health.”

It is important to recognize the wide variation in the scope of care/practice between case managers and similar roles at different agencies and organizations, including:

• non-profits at large
• municipal governments
• federally qualified health centers
• faith-based organizations
• hospitals
• community health clinics
• shelters 

How a case manager provides direct services, links clients to others, or initiates referrals varies between organizations. Some case managers might provide a warm hand-off, taking the client directly to another site to better access a service that cannot be directly provided by their organization. Others might be limited to offering a pamphlet, website, or phone number for the same organization. Some might specialize in working with a specific community, such as immigrants from Central and South America or individuals with substance use disorder. Others might work with an organization that offers services to individuals with diverse lived experiences but only within a narrower context, such as food access or housing. 

Regardless, all case managers have an obligation to at least be able to provide relevant contact information for all of the services that their clients request access to, and to consult their supervisors and/or colleagues if they need help finding relevant information. In this way, case managers try to provide a “one-stop shop” for their clients to better reduce any barriers to care and assistance. 

Case managers must also manage expectations, however, and understand the limits to their abilities. They are rarely the experts on anything outside of advocating for their clients or providing access to highly specific resources like ADAP, Project Open Hand, and Housing Opportunities for People with HIV/AIDS (HOPWA) housing. A key tool for case managers is the connections they establish with experts, such as the dedicated Spanish-speaking paralegal at a legal aid clinic, a manager at the local shelter for people who have experienced domestic violence, or the linkage coordinator at the local hospital.

Case managers must use their best judgment in finding the line between going above and beyond and experiencing burnout. While finding gratification in helping others, it is easy for a case manager to embrace a “superhero” role. An example might be contacting a client on your day off, or driving to the client’s home when they stop returning emails (unless the scope of your position explicitly allows for home visits). 

In attempting to be the superhero, case managers can burn out or set a precedent that is hard to live up to for all their future clients. They also lose sight of the collaborative nature of their work, reshaping it into something more like the “top-down” traditional models of social welfare and medicine. Remembering the core beliefs of client-centered care (e.g., client autonomy) can help case managers avoid the superhero role. 

Those beliefs show up in the day-to-day work of a case manager through: 

• listening to the client
• remaining curious and humble in conversations
• validating their experiences and concerns
• documenting their conversations as needed/required
• providing simple health education as needed using accessible language
• forwarding their concerns to the appropriate staff, organizations, etc.
• providing clients with the resources and information that they need to find care that the case manager is unable to directly provide. 

This scope of care reminds case managers that larger struggles of communities cannot be solved by the case manager alone or within a vacuum. Systemic and institutional change often comes from social and political movements, and case managers themselves face the contradiction that they themselves are part of a system or institution; they are advocating from within the machine, not from without it. This is not meant to diminish the value of the work, but to highlight the boundaries within the work. By recognizing the boundaries, we can help avoid the superhero role and the consequent burnout and turnover of positions. 

Understanding the scope of work (Ryan White agencies) you are funded/hired for

It is important to understand that not all agencies and organizations serving people living with HIV are Ryan White funded. This context matters, because how a case manager’s position is funded often determines the work that is required for their role and how to document it. This understanding also promotes the case manager’s growth within the field, empowering them to understand important institutions within public health with a more global perspective. Some positions might be funded by the city, the county, the state, another federal funding source, or even a private funding source such as a pharmaceutical company or foundation. Furthermore, not all positions working in the HIV prevention and care field are funded through the Ryan White Program, even if their clinic receives Ryan White funding. 

Getting clarity on your job description for your position

Just like understanding how a job is funded, understanding the job description more fully helps a case manager to succeed in their position. It is highly recommended for case managers to keep a copy of their job description handy. This can serve as a guide in their onboarding process. It also provides clarity when seeking feedback. If their job is unionized, it often provides the measures by which they are evaluated on an annual basis. If they don’t have access to their job description, they should request it from their supervisor or the Human Resources team. 

Your agency’s administrative support structure and your access to it

Getting to know how an agency operates, all of its hierarchies, chutes and ladders, etc., is a daunting task that often takes a while to understand! Even if the case manager has a flow chart or staff directory (which they should ask their supervisor for), there are often unspoken flow charts or rules of thumb that can be hard to sort out at first. Here are some tips for case managers to help set them up for success:

• Always take the opportunity to introduce yourself and your position to staff that you meet, and reach out to new staff as a resource—especially with other frontline staff! Building connections and offering help will only serve you and your clients better as you try to increase your efficiency and reduce barriers to care. 
• If you have an internal website (non-public facing), make sure to explore its nooks and crannies (as well as the public-facing website). 
• Two common departments where it’s good to remember names and faces, in particular, are Human Resources and Quality Improvement. 
• If your position is unionized, make sure to get to know your union representatives!

Ethical standards in case management

NOTE: Many of these topics refer to specific legal rules and regulations. It is vitally important to consult with your supervisor about ensuring that your work and the work you observe adhere to legal obligations. 

Mandated reporting 

NOTE: The authors of this manual are not experts in mandatory reporting. Not all examples of abuse or violence described in this section necessarily meet the definition of reportable. Also, case managers might not always fall under the definition of mandatory reporter, depending on the scope of practice, your job description, etc. Ask your supervisor whether you are a mandated reporter, and how that is defined and determined by California state law. If you are a mandated reporter, seek out professional training ASAP if you have not had training already. High-quality training in mandatory reporting is helpful even if you are not a mandated reporter, as case managers coordinate clients’ care with colleagues who ARE designated as mandatory reporters, including doctors and licensed clinical social workers.

A final note on mandated reporting:

A common recommendation for case managers and other types of social workers is to inform clients ahead of time that you are a mandated reporter. The idea is that by warning clients ahead of time, the case manager can forestall situations where their role as a mandated reporter might be called upon. The writers of this manual would urge you to consider this common recommendation shrewdly. Context is key; there is no “one size fits all” rule here, especially for case managers. Please discuss further with your direct supervisor.  

Confidentiality

Confidentiality, and the right to privacy, undergirds the entirety of the case manager’s day-to-day job. The individuals we work with have experiences that often lead them to distrust doctors, hospitals, clinics, social workers, and even the government and the systems it administers. These experiences vary widely, including medical racism, shaming of sexual practices, medical debt, confusing jargon, and criminalization of substance use and sex work. HIV stigma reinforces the need for confidentiality. It is vitally important to verbally reiterate confidentiality and the right to privacy when attempting to build rapport with new clients or when introducing new services or requirements to clients. (For more on these topics, please revisit the beginning of this section and the terms client-centered care and trauma-informed care.)

There may be times when confidentiality, as the client understands it, is not possible. A client might ask for a confidential rapid HIV test, when they really mean an anonymous HIV test. They might ask if STI testing results are sent to the government, requiring you to explain the importance of reporting results to your local department of public health. Other examples where confidentiality can become murky from the client’s perspective include mandatory reporting and partner services. (In this manual, see Section 7: Sexual Health.) All of these examples highlight the importance of transparency and meeting the client where they are at. 

Informed consent

According to the National Institutes of Health, “Informed consent is the process in which a  healthcare provider educates a patient about the risks, benefits, and alternatives of a given procedure or intervention. The patient must be competent to make a voluntary decision about whether to undergo the procedure or intervention.” 

At a very basic level, informed consent aligns with principles of client-centered care. It provides clients with options, centering their autonomy and knowledge to decide what is the best next step for them in their care plan. It educates clients on potential side effects, benefits, cost, and other considerations, equipping clients with the necessary information to make an informed decision and confirm informed consent to proceed in a specific direction. 

However, it is important to understand that case managers are not healthcare providers just as much as it is important to understand the shared principles in which we collaborate with  healthcare providers in offering ongoing care to clients/patients. 

As patient advocates, case managers must also speak up when they are concerned that informed consent might not be properly adhered to in the process of determining a course of treatment, a care plan, next steps, etc. This is especially the case if the case manager more intimately understands the lived experience of their client while the  healthcare provider might not (for example, if the case manager is a former drug user, the client is struggling with substance use, and the  healthcare provider has not experienced that struggle).

Trauma-informed care recognizes the unique experiences that clients bring with them in the process of accessing and accepting care, as well as the universal truth that we all have biases borne out of our lived experiences. An essential part of informed consent, from the perspective of client-centered care and trauma-informed care, is the consideration of these lived experiences and their impact on how a client might receive information more readily or accessibly. The case manager might be in a position to best advocate for these considerations. 

An example of where the case manager might exercise a traditional delivery of informed consent might be if a client living with HIV asks the case manager to help them talk to their partner about PrEP. If this client is durably undetectable (see Section 6: HIV 101 & HIV Treatment and Section 7: Sexual Health), there is no risk of transmission to their partner through sex. However, it is common for HIV stigma to impact the decision of either the client or their partner—e.g., the client and/or their partner might want the partner to be on PrEP, whether or not the client is undetectable. In this scenario, the case manager would reiterate education on U=U (see Section 6: HIV 101 & HIV Treatment and Section 7: Sexual Health), facilitate a conversation where both client and partner can voice their feelings safely, reiterate the safety of taking PrEP, reiterate the role of the prescribing provider in the decision making process, and reaffirm the partner’s autonomy in making this decision. 

HIPAA/Appropriate information sharing/RoI

HIPAA stands for Health Insurance Portability and Accountability Act. It is a far-reaching umbrella of federal laws, enacted in 1996, that regulates the ways private health information can be shared between various entities (clinics, labs, hospitals, dialysis centers, insurance companies, etc.) and individuals, how that information must then be protected, and how these laws are enforced when violations occur. 

Any entity that collects private health information is mandated by HIPAA to provide training on HIPAA to its workers. This is why we will not go into much detail about HIPAA here—you have likely already received or will receive a thorough training. However, there is one very important point to make here: HIPAA allows for any two entities to share between them the minimum and necessary amount of health information of any patient that is receiving care from both entities.

To put it simply, if a client is receiving services at another organization that collects protected health information, and they are continuing to access services with your organization, you can feel free to share the minimum and necessary information with the other organization in order for the client to continue care. However, always confirm with your supervisor! 

If it is not clear that you can share information readily, always obtain a Request of Information (RoI) form that confirms the patient’s consent to share the information with a wet signature. 

Takeaways for case managers

Seek out trainings in the following areas, especially if you haven’t had these trainings in the past (refreshers are always recommended!):

• Motivational interviewing 
• Trauma-informed care
• Mental health first aid
• De-escalation
• Harm reduction/Narcan delivery