The Coalition on AIDS in Passaic County (CAPCO) is a private, nonprofit community-based organization (CBO) that provides medical case management and non-medical case management for persons living with HIV/AIDS (PLWHA) in Bergen and Passaic Counties.
The organization was founded in 1985 as a grassroots support group for health care providers—who, amid the early spread of HIV, were desperate to support their HIV-positive clients. In 1991, CAPCO established the HIV Care Consortia in order to create new HIV services and facilitate access to existing services. Since that time, CAPCO continues to sponsor quarterly Coalition meetings (the second Wednesday of each quarter), where the primary purposes are (1) promoting health, prevention, and treatment services, (2) providing networking and educational programs on the newest trends/research, (3) providing suggestions to government bodies for the purposes of policy planning and decision-making. So, for over 25 years, CAPCO’s 501(c)(3) resource center has linked individuals to HIV/AIDS prevention, treatment, care, and advocacy.
The CAPCO executive director secures resources through federal programs, state programs, local organizations, grant applications, and independent donations. Individuals who meet eligibility criteria can then be referred to the appropriate programs by our case managers.
Our medical case management, as summarized by the HIV/AIDS Bureau, comprises
a range of client-centered services that link clients with health care, psychosocial, and other services. Coordination and follow-up of medical treatments are components of medical case management. Services ensure timely, coordinated access to medically appropriate levels of health and support services and continuity of care through ongoing assessment of clients’ and key family members’ needs and personal support systems. Medical case management includes treatment adherence counseling to ensure readiness for and adherence to complex HIV/AIDS regimens. Key activities include (1) initial assessment of service needs; (2) development of a comprehensive, individualized service plan; (3) coordination of services required to implement the plan; (4) client monitoring to assess the efficacy of the plan; and (5) periodic reevaluation and adaptation of the plan as necessary over the life of the client. It includes all types of case management, including face-to-face meetings, phone contact, and any other forms of communication.
Whereas our non-medical case management encompasses
advice and assistance in obtaining medical, social, community, legal, financial, and other needed services. Nonmedical case management does not involve coordination and follow-up of medical treatments, as medical case management does. (HAB)
Our case managers conduct themselves according to the HIV/AIDS Case Management Standards of Care enacted by the Paterson-based HIV Health Services Planning Council. We thus assure non-judgmental care, an LGBTQ-affirmative environment, the confidentiality of any information that you provide us, as well as the confidentiality of information that we receive on your behalf. When you meet with our staff, we make available an overview of medical eligibility criteria, financial eligibility criteria, and CAPCO policy statements. If you ultimately qualify for enrollment under our case management services, your file is kept within a restricted-access system, and referrals to external agencies are carried out only with your written consent. Our case managers understand that it takes much courage to discuss very personal information, and they sincerely value the trust of their clients.
Ryan White and HOPWA
The CAPCO resource center is located in the Central Business District of Downtown Paterson, but we reach out to residents in both Bergen and Passaic Counties. The Bergen-Passaic bicounty entity constitutes a single Transitional Grant Area under Part A of the 2009 Ryan White CARE Act, which administers funding through the HIV/AIDS Bureau of the United States Department of Health and Human Services: Health Resources and Services Administration.
The Ryan White HIV/AIDS Program is the largest Federal program focused exclusively on HIV/AIDS care. The program is for individuals living with HIV/AIDS who have no health insurance (public or private), have insufficient health care coverage, or lack financial resources to get the care they need for their HIV disease. As such, the Ryan White HIV/AIDS Program fills gaps in care not covered by other funding sources. (HRSA)
The CAPCO executive Director composes grant requests that make the following Ryan White assistance available to eligible clients:
- Non-Medical Case Management;
- Psychosocial support;
- Housing assistance;
- Early Intervention Services; and
- Medical Case Management, including treatment adherence services. (HRSA)
Successful grant applications also allow eligible CAPCO clients to access federal housing opportunities: the Housing Opportunities for People with AIDS (HOPWA) program is managed by the U.S. Department of Housing and Urban Development’s Office of HIV/AIDS Housing. HOPWA funding
may be used for a wide range of housing, social services, program planning, and development costs. These include, but are not limited to, the acquisition, rehabilitation, or new construction of housing units; costs for facility operations; rental assistance; and short-term payments to prevent homelessness. An essential component in providing housing assistance for this targeted special needs population is the coordination and delivery of support services. Consequently, HOPWA funds also may be used for services including (but not limited to) assessment and case management, chemical dependency treatment, mental health treatment, nutritional services, job training and placement assistance, and assistance with daily living. (HUD)
The program allocates “90 percent of its [funds] using a statutory formula that relies on AIDS statistics (cumulative AIDS cases and area incidence from the Centers for Disease Control and Prevention” (HUD). For the 2012 Fiscal Year, the City of Paterson is approved for a HOPWA grant of $1,380,000 by the Office of Community Planning and Development’s (CPD) formula allocation. The grant currently funds not only the Bergen-Passaic Ryan White Grants Division but also the New Jersey Department of Community Affairs. Individuals enrolled under CAPCO’s case management services may qualify for the following HOPWA support services:
- Housing assistance
- Short-term rental assistance
- Permanent housing and security deposits
- Emergency housing or emergency shelter
- Utility assistance: heat, electricity, water
- Transportation assistance: bus tickets or taxi vouchers for medical appointments and social service appointments
- Nutritional assistance: food vouchers for local supermarkets
- Housing assistance
In order to further support people living with HIV/AIDS in our community, CAPCO has established Project CHANGE (Comprehensive HIV/AIDS Negotiating: Growth and Empowerment) under the N.J. Department of Health’s Division of HIV/AIDS, STD, and TB Services. Project CHANGE is an intervention program for persons whose behavior places them at risk for transmitting or for contracting HIV, sexually transmitted diseases (STDs), hepatitis, and tuberculosis (TB). The program currently comprises the following prevention strategies:
- The Street and Community Outreach (SCO) program provides street outreach and community education presentations to high-risk areas.
- The Health Education / Risk Reduction (HE/RR) program engages participants in informal, interactive, and educational group discussions. The program offers a stress-reducing environment for individuals to share their experiences and to learn from the experiences of others. Discussion topics include:
- Responsible decision-making that reduces the risk of transmission
- Developing responsible sex practices and refusal skills
- Using sensuality products responsibly
- Building and maintaining healthy relationships
- Navigating through stigma
- Struggling with disclosure to family, friends, sex partners, or needle-sharing partners
Project CHANGE currently delivers its variety of services:
- On the streets
- In housing developments
- Through community-based organizations
- Through hospitals, clinics, and other health care providers
As with all other programs under CAPCO’s case management services, Project CHANGE programs offer non-judgmental and client-centered attention. The project would like to emphasize:
We understand that change is a process, not an event!
Community Health Worker
Recognizing the barriers to care that often exist for people living with HIV in our community, CAPCO established a Community Health Worker (CHW) program within Project CHANGE in 2018 under the New Jersey Department of Health’s Division of HIV/AIDS, STD, and TB Services. The program works by linking community members living with HIV to a Community Health Worker who not only serves as a frontline public health worker but is also a trusted member of the community which they serve. Community Health Workers thus use existing relationships with community members to strengthen the relationship between CAPCO and the community which we serve. Community Health Workers:
- Are credible and trustworthy for community members
- Act as a positive role model for community members
- Facilitate communication between medical staff or other service providers and patients
- Focus on empowerment of community members
- Share personal experiences
CAPCO’s Community Health Worker helps:
- Find new cases or people living with HIV who have been lost to care
- Accompany clients to medical visits, mental health appointments, substance use treatment, and/or social service appointments
- Provide education on the HIV viral life cycle and discuss HIV medications/treatment readiness, lab values, drug resistance and adherence, sexual risk reduction, and/or drug use/harm reduction
- Mentor and coach clients on interactions with medical and social service providers
- Provide emotional support and informal counseling with client about disclosure
- Assist with making appointments for HIV primary care, other health care including mental health care, substance abuse treatment, housing services, other support services
- Client access medications and schedule transportation
- Follow up with client about a service or referral and provide reminders for upcoming appointments
CAPCO has also provided direct services to indigent clients through the National Grants Program for Community-Based Organizations (CBOs), which is administered by Broadway Cares / Equity Fight AIDS (BC/EFA). The CAPCO staff assesses the needs of clients who may be eligible for any of the following BC/EFA-funded services:
- Personal care items: toothbrushes, toothpaste, brushes, combs, feminine products, soap, shampoo, conditioner, towels, washcloths, etc.
- Clothing: shirts, pants, sweaters, jackets, shoes, boots, etc.
In 2015, CAPCO provided direct services to 300 persons living with HIV/AIDS, the majority of whom originated from Paterson, Passaic, Hackensack, Englewood, and Teaneck; statistical summary reports from the New Jersey Department of Health identify these municipalities as high-incidence areas for HIV infection. Our client base in 2011 was composed of a chiefly minority demographic:
- Racial or ethnic background
- 67% African American
- 29% Latinx (a gender-inclusive variant of “Latino/Latina”)
- 3% white
- 1% other
- 56% male
- 44% female
- 1% additionally identify as transgender
- Racial or ethnic background
That same client base had reported the following risks for their HIV exposure:
- 73% unprotected sex
- 30% intravenous drug use (IDU)
- 5% sex with an intravenous-drug user
- 3% perinatal exposure
- 1% blood transfusion or blood component recipient
The CAPCO organization itself is staffed primarily by minority individuals: more than 75 percent of the Board of Trustees, 100 percent of the administrative and supervisory staff, and more than 85 percent of the direct service personnel identify themselves as part of a racial or ethnic minority.
Donating and Volunteering
For over 30 years, CAPCO has demonstrated itself a worthwhile organization, but our growth relies on continual contributions from independent donors. As stated earlier, our staff values the trust of its clients; no less genuinely do we value the trust of our donors: the executive director extends budget transparency to prospective donors who are interested in our overall expenditure and in statistical information regarding distributed supplies. While a donation may be used to support any client service, we will oblige if a donor requests that his or her donation be directed toward a particular program. We encourage you to assist individuals living with HIV/AIDS in our community by making a tax-deductible donation to the organization.
You can even apply as a volunteer at the CAPCO resource center! In the process of donating your time toward our clerical operations, you’ll have the opportunity to shape a first-hand understanding of the logistics that drive a charitable agency. If you’re eager to lend a hand—especially if you’re a college student seeking an experience opportunity—get in touch with our office!