East Bay HIV/STI Case Management Manual

Authors: Judy Eliachar & Kenny Hall

The first meeting between the medical case manager and a new client has a twofold purpose: 

• to establish the client’s eligibility for Ryan White Program services and enroll them in the program if eligible, and 
• to begin the process of building rapport and establishing a meaningful working relationship.

Program Eligibility

If the client’s eligibility for Ryan White Program services has not yet been determined, the first steps are to review the client’s intake documents, determine eligibility for services, and complete the enrollment process. This process may be done by the medical case manager or other designated staff. 

If the client has already been enrolled in Ryan White Program services, the referring service provider should be asked for copies of documents confirming program eligibility and enrollment. If the prospective client is found to be ineligible for Ryan White Program services, they should be referred to an appropriate agency in the community for medical care and support services. 

Eligibility for Ryan White Program services is established at intake and is reviewed annually for as long as the client receives services. Eligibility for Ryan White Program services is based on four requirements: medical documentation of HIV status, proof of residence in Alameda County or Contra Costa County, confirmation of income eligibility, and demonstration that the client is uninsured or covered by other sources of medical insurance. 

Proof of HIV status may include:

• HIV positive lab results (antibody test, qualitative HIV detection test, or detectable viral load). Lab results with undetectable viral loads that do not indicate a positive HIV diagnosis will not be accepted during initial enrollment as proof of positive HIV diagnosis; 
• A Letter of Diagnosis from the client’s physician or licensed healthcare provider. Acceptable letters of diagnosis must be on the physician’s or healthcare provider’s letterhead, and must include the physician’s or provider’s national provider identifier (NPI) number or California license number as well as the physician’s or licensed healthcare provider’s signature verifying the client’s HIV status; or
• Diagnosis form (DCPH 8440) completed and signed by the client’s physician or licensed healthcare provider. Other diagnosis forms are also allowed, as long as they confirm the client’s HIV diagnosis.

Proof of residence may include: 

• Copy of a signed lease with the client’s name and address; 
• Copy of a current or previous month’s utility bill or rent receipt with the client’s name and address; 
• Copy of a Supplemental Security Income (SSI) benefits letter addressed to the client at their stated address;
• Copy of a benefits letter from another public agency that is currently providing income to the client, addressed to the client at their stated address;
• Notarized letter from a friend or family member, confirming the client’s name and their address;
• “Verification of residence” letter on official letterhead confirming the client’s placement in a shelter, transitional housing facility, residential treatment program or other similar housing facility/program; or
• Client self-attestation that they are homeless or living in a temporary housing situation that cannot be documented.

Proof of annual income can be demonstrated by:

• Copies of current pay stubs with the client’s name and year-to-date gross income. For clients whose employment is temporary, part-time, or seasonal, the medical case manager or designated staff should request as many pay stubs as are needed to obtain a calculation that takes income fluctuations into account; 
• Copy of the client’s most recent W-2 form;
• Copy of the client’s benefits letter from the Social Security Administration, Alameda County Social Services Agency, Veterans Administration, State Employment Development Department, or other equivalent agency providing income support; 
• Signed and notarized letter from a person providing the client with financial support, including the amount and frequency of support payments; 
• Proof of active Medi-Cal benefits; or
• Client self-attestation that they have no income or that their income cannot be documented (e.g., day labor).

The Ryan White Program is the “payer of last resort.” Enrollment in medical insurance coverage can be demonstrated by:

• Copy of the client’s insurance card, including enrollment cards for ADAP and OA-HIPP; 
• Copy of report obtained from the Medi-Cal eligibility system; 
• Proof of coverage provided by a private insurance company, such as Covered California or a COBRA program (post-employment, time-limited coverage); or
• Client self-attestation of uninsured status.

Enrollment And Intake Procedures

To record the new client’s personal, medical and demographic information, the medical case manager uses a standard form designed by the Alameda County Public Health Department, and/or an intake form that has been modified by the clinic or agency to obtain additional information for assessment purposes and/or for reports related to Ryan White Program activities.

During the enrollment and intake process, the medical case manager also shares and explains clinic/agency procedures and provides a thorough description of the legal protections that clients are entitled to when they receive Ryan White Program services. These procedures and protections are described in writing, and cover such issues as client rights and responsibilities, informed consent to treatment, HIPAA protections, the release and exchange of information, confidentiality and its limits, the security of medical and case management records, and the extent of information-sharing among care/treatment team members. In addition to obtaining relevant releases of information, the case manager explains the Share/Non-Share Consent Form and reviews the agency’s grievance procedure and the process for filing a complaint.

All forms must be signed and dated by the client and witnessed by the medical case manager, with signed copies given to the client and maintained in the client’s record. If necessary, an interpreter (telephonic or in-person) should be used to provide enrollment information in the client’s primary language.

The Intake Interview

The process of establishing rapport and building a therapeutic relationship begins during the intake interview. The medical case manager’s role is to facilitate the creation and maintenance of a safe space where the client can ask questions, share their concerns, describe the services they are seeking, and safely disclose their current circumstances and needs, as well as their goals for the future. 

The medical case manager and the new client should engage in a conversation about the purpose and process of case management, the role of the medical case manager, the client’s expectations, appropriate boundaries, and the framework that will define the work and the relationship between the client and their case manager. The client’s expectations should be explored and clarified. The medical case manager should emphasize the importance of maintaining contact, keeping scheduled appointments, and following up on referrals. 

Using active listening and open-ended questions will encourage the client to speak freely, and will help the medical case manager obtain information about issues and possible challenges that are affecting the client’s health and quality of life, as well as any emergencies or crises that the client is currently experiencing. This information will help the medical case manager in assessing the client’s needs and identifying workable strategies for addressing them. 

During the interview, the medical case manager should also obtain and document healthcare information related to linkage and retention in care, provider visits, labs, medication adherence, and viral load. Challenges related to medical care and medication adherence should be discussed and possible solutions should be identified and explored if appropriate. 

At the end of the first meeting, the medical case manager should describe the next steps in the process, i.e., completing the written assessment(s), developing and periodically reviewing the care plan, referrals to resources, the frequency of meetings, and the date and time of the next appointment. 

Assessment

The medical case manager conducts the comprehensive assessment as they begin their work with a new client. Information shared by the client during the assessment interview provides the medical case manager with a framework for evaluating and addressing the client’s needs, assessing the client’s strengths and resources, providing appropriate linkages to available services, coordinating care, and working with the client to develop goals that will be included in the care plan.

At its best, participation in the assessment process may also provide an opportunity for the client to overcome any reluctance to share deeply personal information, gradually build a safe and trusting relationship with their case manager, and ultimately feel confident that their case manager will support and assist them. In a successful client–case manager relationship, the client will come to view their case manager as a trusted ally they can turn to when they need help and support.

Medical case management services under the Ryan White Program are intended to improve healthcare outcomes and to support the client in moving toward self-sufficiency. The assessment process should provide the medical case manager with the detailed information needed to assist the client in achieving the following:

• accessing and maintaining a connection to HIV primary healthcare providers 
• maintaining adherence to HIV treatment
• obtaining the resources and services needed to address emergency, short-term, and long-term needs
• stabilizing their existing support system and identifying additional sources of support 
• establishing a realistic plan for achieving future goals that support optimal health and improved quality of life 

The comprehensive assessment includes questions about the client’s needs and concerns related to their HIV diagnosis, as well as their need for services that address unmet medical, mental health, physical, spiritual, psychosocial, housing, and economic needs. The assessment is also designed to elicit information about the client’s resources and strengths, their perceived and actual social supports, and the extent to which they believe they are supported by their family and community. While the initial assessment is conducted following the new client’s intake interview, assessment should be viewed as an ongoing process, with documents that are routinely updated when previously undisclosed information is shared, or when the client’s circumstances change. 

Assessment is typically conducted in a face-to-face interview or series of interviews, using one or more assessment instruments, including the assessment form developed by the public health department. Many clinics/agencies have adapted the standard assessment form to elicit additional information for a more detailed picture of the client’s history and needs. 

The Ryan White HIV/AIDS Program Standards of Care for Medical Case Management that are currently proposed for use in the Oakland Transitional Grant Area (TGA) state that, at minimum, an assessment should provide the medical case manager with information related to the following issues and needs:

• Benefits counseling and insurance coverage
• Medical care, including HIV care, primary care, and medical referrals
• Adherence to medication and appointments
• Mental health services, including the need for psychiatry and psychotherapy
• Substance use history and the need for substance use treatment and addiction support, including harm reduction support
• Health education, health promotion, and disease prevention
• Usage of core and support Ryan White Program services
• Sexual health behaviors
• Family composition and relationships
• Evaluating and improving social and community support systems
• Housing navigation assistance
• Transportation coordination
• Risk reduction counseling
• Partner notification and disclosure
• Environmental and interpersonal safety
• Legal support
• Access to food resources and nutritional assessment
• Dental care
• Language and cultural needs
• Financial assistance including emergency financial aid
• Spiritual care

A comprehensive initial assessment helps the medical case manager understand the client’s current capacity to independently meet their needs for treatment and support services, how much the client’s social support network can help the client meet their needs, and the areas where the client needs assistance in securing services. The assessment should include a process for screening for risk behaviors, as well as questions that assess the client’s need for HIV/AIDS education and support in disclosure of their HIV status.

The medical case manager should also ask which agencies or programs are already involved in the client’s treatment or care, e.g., their primary medical provider, AIDS service organizations, other treatment programs, safety net programs, and agencies in the community that provide social services and/or case management. This information will assist the medical case manager’s efforts in care planning and coordination.

Psychosocial Assessment: At some clinics/agencies, the initial assessment process includes a thorough psychosocial assessment. A psychosocial assessment provides detailed information about the client’s capabilities and resources, the role(s) they play in intimate relationships and in their family and community, the quality of their interpersonal relationships, and the issues they confront in dealing with their social environment. Factors such as educational background, vocational skills, employment, financial issues, legal concerns, level of social functioning, and involvement in social, religious, leisure and community activities, are also assessed, as are the client’s physical functioning, household responsibilities, and basic needs. 

The medical case manager also uses the psychosocial assessment to evaluate the client’s coping skills and to explore issues related to mood, self-esteem and self-efficacy, and current mental health challenges, including problematic substance use. Family background and composition, trauma history (including childhood abuse and neglect), and past mental health history are also examined, along with issues related to past or current sexual abuse or exploitation. 

Assessing Housing Needs: 

The Ryan White Program, as administered in the Oakland TGA, requires that clinics/agencies provide quarterly reports on the number of clients who are currently literally homeless (living in an emergency shelter or a setting unsuitable for habitation); housed temporarily in institutional settings; insecurely housed; rent-burdened; or securely housed in housing they can afford. 

If the client has unmet housing needs, a separate housing assessment should be completed. For a list of questions that should be included in a housing assessment to assist with the client’s housing search, please refer to the Appendix. 

Knowledge of the client’s current housing situation and housing history provides the medical case manager with the detailed information they will need to make appropriate referrals to agencies that provide housing navigation, housing case management, or housing-related legal services, and to assist the client in applying for affordable or low-income housing, including subsidized housing funded by the HOPWA program. 

Acuity Scoring: The assessment should also provide the medical case manager with enough information to establish the client’s acuity level based on the Client Acuity Scale Worksheet developed by the State of California Office of AIDS. The acuity scale is used to determine the frequency and intensity of case management services that an active client should receive. (An active client is defined as a client who has had successful contact with medical case management services within the last six months). 

The Acuity Scale has four levels based on the client’s level of functioning, their level of need, and the intensity and frequency of case management services they are likely to require.

• Acuity Level 1 includes high-functioning clients seeking assistance in meeting only one or two needs and who require minimal or no follow-up. 

• Acuity Level 2 includes clients who are generally functioning well but might have several complex needs. These clients typically require relatively limited help in maintaining their health and activities of daily living. Services at Level 2 could include treatment adherence counseling, help coping with a new HIV diagnosis, partner services, referral to outpatient substance use treatment, assistance with applying for health insurance, etc.

• Acuity Level 3 clients have “multiple urgent needs and/or extensive problems” and require more frequent contacts with their case manager. They commonly have difficulty following through with their care plan without case manager involvement. Interventions that might be required at Level 3 include crisis intervention as well as assistance in addressing financial insecurity (including the need for emergency financial aid), immediate violence or safety issues, risk of loss of housing, and support in managing complications from low medication adherence, advanced disease states, and recent emergency room visits or inpatient hospitalizations. 

• Acuity Level 4 clients are defined as “severely impacted” and typically require immediate, intensive and ongoing assistance such as crisis intervention and stabilization, help with managing a disabling condition, and interventions related to recent incarceration, homelessness, chronic food insecurity, and lack of income or significant loss of income. Patients at Acuity Level 4 might have an immediate need for a higher level of care such as home healthcare, residential substance use treatment, or inpatient psychiatric treatment. 

Because assessment interviews are lengthy and detailed, and because assessment questions can often feel intrusive to the client, it is important that the medical case manager develop an interview style that is client-centered, interactive, respectful, non-judgmental, supportive, and compassionate. It is important to recognize that there is an inherent power imbalance between the person in a professional role who asks questions of an intimate nature and the person who is expected to disclose numerous, often sensitive, details about their current circumstances or life history. New clients may not feel safe volunteering personal information about themselves or asking questions of the medical case manager that they feel are embarrassing. Clients may also have a hard time expressing their feelings or admitting their needs in conversation with a stranger. 

The medical case manager should also be aware that the client is likely to have experienced multiple traumas, such as traumas around their HIV diagnosis and HIV stigma; traumas from mistreatment based on their gender identity or sexual orientation; traumas that are personal, familial, or multi-generational; and childhood traumas that are referred to as ACEs (Adverse Childhood Experiences). These traumas are very often compounded by a history of community trauma based on race, ethnicity, and poverty. 

Medical case managers should have an understanding of trauma informed care and how it should be integrated into their work with clients. The guiding principles of trauma informed care are safety, choice, collaboration, trustworthiness, and empowerment. In applying these principles to the process of intake and assessment, it is essential for the medical case manager to convey to the client that they are welcomed, respected, and supported, and that they are in an environment where their emotional and physical safety is of paramount importance. When asking assessment questions that could require the disclosure of the client’s past trauma history, the case manager should be aware of the risk of inadvertently triggering re-traumatization, and should be attuned to signs that the client might be experiencing emotional and physical stress triggered by re-experiencing a traumatic event. Approaching the assessment process with emphasis on empathy, absence of judgment, and willingness to proceed at the client’s own pace will help lay a foundation for a trusting and collaborative relationship that will support the process of setting and monitoring care plan goals. 

The Care Plan

The medical case manager’s primary role is to ensure that the client has access to the services and care they need. The care plan provides a structure to guide the case manager’s work with the client. In addition to measurable long- and short-term goals, the care plan identifies which resources and services the client should access in order to address their needs and achieve the care plan goals.

The care plan should be the product of (1) the information learned about the client’s circumstances and needs during the comprehensive assessment process and (2) an ongoing dialogue between the medical case manager and the client about the client’s concerns and unmet needs. While the case manager should not support or encourage setting clearly unrealistic goals, the client’s personal objectives should be part of care plan goals. To increase client motivation and engagement in the process of working toward their goals, they should be involved to the greatest extent possible in developing their care plan. 

As the relationship between the client and case manager develops, and as expectations around self-disclosure increase while developing care plan goals, there are several interpersonal guidelines that should be observed. Consistent boundaries are fundamental to the development of trust, as is clear communication about what should be expected in the relationship between the client and the case manager. Assumptions about the client’s family relationships that could be grounded in cultural experience should be approached carefully, and sensitivity should be exercised in inquiring about the client’s social or family relationships. Careful use of language is also important, as words that convey expertise can be inadvertently or deliberately used to suggest the existence of a hierarchy. Words and phrases have different meanings in different cultures, leading to possible misunderstandings and discomfort on the client’s part.

Like the assessment, the care plan should be considered as a “living document” that should be reviewed regularly and modified as needed. Periodic updates should record progress made at each step toward achieving the care plan goals. When the client has been unable to work on an agreed-upon step, the case manager and client should engage in a conversation about the barriers to working on the step or task and discuss ideas for addressing the issue(s). In addition, the plan should include contingency plans for when services or resources are unavailable.

Developing Care Plan Goals:

The care plan consists of both long-term and short-term goals. By definition, a goal is a broad, general statement of a desired outcome. A long-term goal reflects a goal that the client wishes to achieve, e.g., reducing social isolation or making life-style changes that will lead to improved health. A short-term goal typically addresses an immediate need such as crisis stabilization, loss of income, or imminent risk of loss of housing. In either case, the goal is accompanied by a series of tasks the client must complete or steps they must take in order to meet the goal. Care plan goals should always address the unique issues the client is confronting and should state as clearly as possible what must be done to accomplish the goal. 

It is important to remember that work toward achieving goals “belongs to” the client. A goal could be written using phrases such as: “client will reduce (or increase, alleviate, or resolve, etc.) a given circumstance.” A goal should never be written in a way that suggests that the case manager is responsible for attaining the goal on the client’s behalf. However, it is acceptable to state that the case manager will support the achievement of the client’s goal through activities such as linkage to a needed resource or service, follow-up and case coordination, assistance in navigating a complex system, problem solving, emotional support, or advocacy. In this case, the case manager’s actions in facilitating the achievement of the client’s goals would be included among the steps being taken by the client. For example:

Care plan goals should be measurable and clearly defined. The acronym “SMART” is often used to define goals that are viable and attainable within a certain time-frame. SMART stands for specific, measurable, achievable, relevant, and time-bound. When a goal is specific, it clearly states what will be accomplished. A measurable goal is quantifiable, making it possible to track progress and make adjustments when needed. Achievable goals are realistic and likely to be accomplished, and relevant goals are inherently important to the person(s) setting the goal. Finally, when a goal is time-bound, there are clearly defined timeframes for completing each of the tasks leading to the goal’s accomplishment.

Throughout the process of developing the care plan, there should be an honest discussion about the goals the client believes are most important, the goals they believe are achievable, and the extent to which they feel ready to participate in the process of working toward achieving those goals. Setting defined goals and working to achieve them involves the client developing a sense of ownership, as well as a commitment to behavioral change. 

The case manager should be available to support the client as they identify where they are in terms of readiness for change. Care plans and interventions can then be developed accordingly. The “stages of change” model acknowledges that change is “an internal state influenced by external factors,” and adds that clients often make several attempts at change before they are able to achieve a stable change in their behavior.

The following is a quotation from The HIV/AIDS Case Management Services Protocol, written by the staff of the County of Los Angeles Department of Public Health. It expresses perfectly the mixture of acceptance, grace, flexibility, and optimism that is found in the most effective work done by medical case managers:

“Achieving small steps can be recognized as progress. Steps can be celebrated as successes independent of achieving the client’s goal. Obstacles and barriers can assist in re-thinking steps needed to achieve client goals. . . . 

Appropriate action, no matter how small, results in change and growth. Change happens one step at a time. Our task is to help clients keep taking these steps, however small, each and every day in order to achieve their goals, which often takes some time. ‘Today I will do one thing’ reminds clients to keep taking these small steps even when they don’t feel like it. One small step taken every day is progress. When we manage to accomplish even one small thing that we set out to do each day, we can feel we are making progress towards our goal.”

Linkage To Services

Care plan goals almost always include steps that involve referrals to programs or services that will address the client’s unmet needs. The medical case manager plays a vital role in informing the client about available resources in the community and facilitating the client’s access to services. The medical case manager may also be called upon to advocate for the client if the client’s access to services is delayed or denied. 

If possible, the medical case manager should establish networking relationships with staff of the resource agencies that are commonly used for client referrals. This is useful for following up on referrals and learning the referrals’ outcome. Information about the agency’s hours, location, and telephone number/email address should be confirmed and updated. The referral process will be easier for the client to navigate if they are well-informed about the service they are being referred to, and have a clear sense of what to expect when they visit the agency for an appointment.

At a minimum, before offering a referral to a program or service, the medical case manager should verify that the client meets the program’s eligibility criteria. The medical case manager should describe the services offered by the resource agency and explain whether the resource is immediately available or if the agency maintains a wait list. The medical case manager should also carefully assess the client’s capacity to independently seek and apply for services, and whether the client will need the medical case manager’s support in attending agency appointments and applying for services.

The following issues should be discussed with the client as the referral is being offered:

• Document readiness: Does the client have the documents needed to complete the agency’s application process?
• Access: Does the client have transportation needs, such as paratransit services? Does the client need assistance with paying for transportation? Does the client have mobility issues that will need to be accommodated?
• Communication: Will the client require interpreter or translation services that need to be arranged in advance? Does the client have disabilities related to vision or hearing? Is the client living with a learning disability or severe mental health issue? Will the client’s literacy issues warrant the medical case manager’s help with reading applications and filling out forms?

The medical case manager should ensure that the client has realistic expectations about the resources that are available in the community, whether these resources are relatively easy to access, whether the resource or service is time-limited, and how long they might have to wait in order to receive the resource. This is especially important for clients who are seeking low-income housing and who will face issues with being selected for placement on wait lists.

Documentation And Note Taking

Most medical clinics and AIDS service organizations that receive Ryan White funding also receive funding from other federal or state sources such as Medicare and Medi-Cal, as well as funding from foundation grants or other government programs. Funding sources will likely have differing requirements for reporting on program goals, providing demographic or statistical information, documenting client contacts, and tracking medical information related to lab tests and treatment adherence. For the medical case manager, reporting their work with clients in multiple databases can be complex and time-consuming.

There are expectations and requirements for documentation and note-writing that apply in almost all cases. First, medical case managers should receive sufficient, ongoing training for a solid working knowledge of the large databases that are used in most medical settings (EPIC is a good example). They should also be trained in the procedures for entering client information in the database used by the Ryan White program. Medical case managers should ask administrative and supervisory staff for ongoing training and direction, and should also take advantage of training opportunities offered by the public health agency that administers local Ryan White programs.

When recording information about client contacts, results of outreach to referral sources, or progress toward meeting care plan goals, the following common-sense practices should be observed:

• Notes should be written and entered in the client record as soon as possible after the contact takes place. It can be time-consuming to reconstruct the content of meetings and phone calls long after the fact. (And remember that “if it isn’t documented, it didn’t happen.”)
• The medical case manager should consult with their program supervisor if there are questions about how notes should be formatted and/or the level of detail that is expected. 
• Client information that will be needed for program monitoring or preparation of periodic data reports should be entered accurately in the client record so that it is readily available when needed.
• In addition to charting in the client’s record, the medical case manager might want to keep a separate log for tracking referrals to agencies providing support services. Information could include the referral date, name of the program/agency, the service being sought, the staff person contacted, and the outcome of the referral. Applications for housing could be recorded in a similar log.
• The medical case manager should be mindful of their use of language when entering notes in the client’s record. First, writing in excessive detail is not the best use of time. Second, with many clinics now making client records available for review by the client or their advocate, notes should be written using language that is non-judgmental, factual, and free of opinions.
• Issues such as counter-transference (the case manager’s feelings and opinions about the client and how their work with the client is affected) should always be discussed during supervision but recorded in a personal, private notebook that will not be seen by others.