Women, Children, Youth and Family Services

Family-Centered Health Care Services

Program Description

In New York State, many families affected by HIV experience poverty, substance use, domestic violence, mental illness, and family disruptions. HIV often affects several generations in one family. In addition to addressing their immediate health care concerns and the emotional needs of their children and adolescents, infected parents or caregivers often face compounding issues such as custody arrangements, daily childcare, disclosure, elder care, and discrimination.

Much is known about providing care to families affected by HIV and important pieces of the comprehensive continuum for HIV care are in place. However, the number of women newly infected with HIV, especially women of color, continues to grow, and the role of HIV-infected men and their involvement in the care of families have been largely overlooked. Family responsibilities, lower socioeconomic status, disability, and access issues continue to present barriers to health services. Caregiver and family factors are strongly associated with nonadherence to treatment. Thus, engaging and retaining HIV positive pregnant women and parents with dependent children in the health care system requires holistic, family-centered services, that recognize their roles as primary caregivers and address the multiple needs of all family members.

Recognizing that health care is delivered within this complex and changing system, the Family-Centered HIV Health Care Services initiative provides a framework for the treatment and care of adults living with HIV in the context of family. Its goal is to reduce access barriers within the health care system, improve the health status of HIV-affected families, reduce the risk of perinatal transmission, support adherence to treatment, and understand the role of families in HIV prevention.

Grant funding for Family-Centered HIV Health Care Services promotes a holistic approach to family health, linking medical, psychosocial, and concrete services to meet the needs of families. Programs encourage new community partnerships and greater involvement of families in planning their health care. This model acknowledges that in order to be effective, service programs must be based on family values, priorities, and needs, and must provide a supportive, respectful care environment. Collaboration between families and professionals in making care decisions is an essential component of the family-centered approach.

Family-Centered HIV Health Care is an integrated model of service. The intent is to coordinate HIV, primary care, and gynecologic services and adopt a life cycle approach to the care of families. Multicultural, multidisciplinary teams integrate medical care, including HIV specialty care, with mental health, substance use, prevention with positives, case management, and other HIV-related services to address the complex medical and social issues faced by HIV-affected families. Programs foster strong working relationships among adult medicine, obstetric, and pediatric programs for the care of children and adolescents who are exposed to, infected, or affected by HIV. For women with HIV, gynecologic and reproductive health services, including family planning, are crucial components of care that have not been adequately addressed in many specialized HIV programs. In addition, Family-Centered HIV Health Care programs play a key role in reducing the risk of HIV perinatal transmission and provide comprehensive care for pregnant women with HIV.

Family-Centered HIV Health Care Services programs were established in 2003. A statewide network of eleven health care agencies provide funded services. Women and men living with HIV and their dependent children/adolescents are eligible for program services.

Funding

The Family-Centered HIV Health Care Services initiative is supported by approximately $3 million in combined State and federal funds.

Contact:

Family and Youth Services Section
Bureau of HIV Ambulatory Care Services
Division of HIV Health Care
(518) 473-3435

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Centers of Excellence in Pediatric HIV Care

Program Description

Since the mid-1990's, pediatric HIV infection has changed dramatically. The number of sero-positive women giving birth in New York State declined from 1,898 in 1990 to 6421 in 2004, a 66 percent reduction. Between 1990 and 2002, the seroprevalance rate among childbearing women also declined from 0.66 percent to 0.25 percent. With the advent of antiretroviral prophylaxis, the statewide perinatal HIV transmission rate declined from an estimated 25 percent in the early 1990's to 2.8 percent in 20041. The annual number of reported pediatric AIDS cases and the number of pediatric deaths attributable to AIDS have also declined significantly due to the factors mentioned above and to advances in medical management of the disease. While there are fewer infected children entering care, perinatally acquired HIV infection is, for most infected children, a chronic disease that requires complex medical and psychosocial management.

The Centers of Excellence in Pediatric HIV Care were designed to meet the complex medical management and unique psychosocial and educational support needs of these children as they grow and develop while living with HIV. In addition, Centers of Excellence in Pediatric HIV Care are key players in community/regional systems to prevent perinatal HIV transmission and to care for pregnant women with HIV and their children. To fulfill this role, Centers promote access to care; provide consultation to community providers and birth facilities; and accept referrals for the direct provision of comprehensive care and services for HIV-exposed newborns and children with HIV.

Centers of Excellence in Pediatric HIV Care offer multicultural, multidisciplinary teams of experienced providers that include one or more pediatric HIV specialists. Centers of Excellence provide pediatric primary care on-site or by a close consultative relationship with the primary care provider that includes regular communication, case conferencing, and education activities, as appropriate. Centers of Excellence in Pediatric HIV Care provide a continuum of care that includes prompt access to pediatric subspecialists, an adolescent HIV specialist/ adolescent medicine clinician when serving adolescents through the Center, and tertiary care centers with experience in treating children with HIV. The Centers also provide continuous support to family members in their caregiver roles.

Children with HIV infection may have significant mental health, neurological, or developmental problems due to the impact of the disease on their maturation, often compounded by environmental issues such as poverty and parental substance use. Therefore, mental health, nutritional, neurological, and developmental assessments by qualified staff are integrated into the services provided on-site at Centers of Excellence. A Center's network of grant-funded services also includes family-centered case management, treatment and prevention education, adherence support, and strong linkages with a variety of community-based organizations to support the child and his/her family with psychosocial services.

Ten Centers of Excellence in Pediatric HIV Care were established statewide in 2003 to serve HIV-infected children, including HIV-exposed infants. Centers of Excellence in Pediatric HIV Care also serve adolescents in geographic areas where access to youth-oriented specialized HIV health care programs is limited.

1 Data is preliminary.

Funding

Centers of Excellence in Pediatric HIV Care are supported by approximately $2.7 million in combined State and federal funds.

Contact:

Family and Youth Services Section
Bureau of HIV Ambulatory Care Services
Division of HIV Health Care
(518) 473-3435

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Prevention Services For Adolescents and Young Adults

Program Description

New York State leads the nation in AIDS cases among adolescents and young adults. As of December 31, 2003, more than 22,500 young people under the age of 30 have acquired AIDS; many were infected as teenagers. During 2003 alone, 458 young people (age 13 through 24) received an initial HIV diagnosis. The impact of HIV on young people, coupled with the complex challenges confronting them, requires a vigorous and comprehensive strategy to assist young people in reducing their risk for HIV infection.

Adolescent HIV Prevention Services (AHPS) was created in 1994 to expand and strengthen HIV/AIDS prevention services for young people and to support these services with a comprehensive statewide strategy for program planning, development, delivery, and evaluation. Currently, AHPS funds 34 community and school-based programs that serve a broad spectrum of young people.

The service providers funded by AHPS serve a diverse cross-section of adolescents and young adults (ages 13 to 24) including heterosexual youth; young people who are lesbian, gay, bisexual or transgender; young men of color who have sex with men; and young people from various socio-economic, racial, and ethnic groups. The primary target population is youth who are at risk for HIV infection, including young people who are homeless, out-of-school and incarcerated. The challenge for providers is to deliver prevention services tailored to the various populations to provide them with the knowledge, skills, and motivation to change behaviors that put them at risk for HIV infection.

Program Models

AHPS supports three primary HIV prevention program areas: community-based prevention; school-based prevention (from elementary through college); and a lesbian, gay, bisexual, transgender initiative. The prevention services provided in these program areas are delivered through a variety of methods and strategies including peer-delivered education and outreach interventions, intensive outreach and early intervention services targeting young men of color who have sex with men, the performing arts, adventure-based learning, parent education, positive youth asset development, service learning, social marketing, and interactive educational activities. Programs are located in urban, suburban, and rural communities in New York State. AHPS staff provide program oversight and technical assistance to the service providers and work with them to explore methods to improve service delivery.

Positive Youth Development and HIV Prevention

The adolescent HIV prevention service programs incorporate the principles and practices of positive youth development into their HIV prevention programming. The programs do not solely focus on young people's deficits and problems, but also identify their strengths and internal and external assets. This strength-based approach requires programs to provide opportunities for young people to explore and develop a full range of capacities and skills. The combination of youth development opportunities and individualized multi-session, behavior-based harm reduction interventions enhance the ability of the programs to provide effective HIV prevention and risk reduction services for young people. The programs are also required to facilitate young people's access to STD screening and treatment, HIV counseling and testing, and health care services.

School-based HIV Prevention Education

The AIDS Institute, through a memorandum of understanding with the New York State Education Department, supports the delivery of HIV/AIDS prevention education to students in public schools in the State. Specifically, funding supports the provision of training and technical assistance to school personnel in New York State through the operation of an online distance-learning project. By accessing the web-based program, school staff can receive training and relevant resources of information to be prepared to provide HIV/AIDS prevention education to their students inthe context of a comprehensive health education program. The AIDS Institute and the State Education Department also collaborate to ensure that updated and accurate HIV prevention information and resources are made available to school districts throughout the State and that schools and community-based HIV service programs work together to provide HIV/AIDS prevention education to students.

Assets Coming Together for Youth

The AIDS Institute, in conjunction with the New York State Department of Health Center for Community Health, manages an initiative designed to build community capacity to improve the health and well being of young people. The goal of the Assets Coming Together (ACT) for Youth initiative is to promote the use of youth development strategies in targeted communities to assist young people lead healthy and productive lives. ACT for Youth supports eleven Community Development Partnerships located in urban, suburban, and rural areas of the State. The partnerships represent broad-based community interests and are comprised of an array of organizations providing health, education, mental health, employment, recreational, and social services to young people and their families. The partnerships promote increased community opportunities and supports for young people, create meaningful roles for youth in their communities, and work toward changing how service organizations and communities view young people. The initiative also supports two Regional Centers for Excellence, one located upstate and one in New York City. The Centers assist the community partnerships and other youth-serving organizations to undertake community development activities and foster the use of youth development strategies by programs serving young people. The Centers provide intensive technical assistance and training and serve as clearinghouses for the collection and dissemination of youth development resources and best practices.

New York State Prevention Planning Group

Finally, the Young People's Committee of the New York State HIV Prevention Planning Group has been actively involved in gathering information and reviewing the HIV prevention needs of the State's young people. AHPS and the Young People's Committee work collaboratively to identify the specific HIV prevention interventions and services that effectively prevent and reduce the risk of HIV infection for young people.

Funding

The programs managed by Adolescent HIV Prevention Services are supported by approximately $7 million in combined State and federal funds.

Contact:

Adolescent HIV Prevention Services
Bureau of Special Populations
Division of HIV Prevention
(518) 486-6066

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Youth-Oriented Health Care Programs

Program Description

As of December 2003, the total number of AIDS cases reported in New York State among young people ages 13 to 24 years was 4,688 (792 cases among adolescents ages 13-19 and 3,896 cases among young adults ages 20 to 24). There are an additional 3,201 youth aged 13-24 living with HIV (792 cases among adolescents ages 13-19 and 2,409 cases among young adults ages 20-24). Because of the average 10 to 12 year incubation period between HIV infection and AIDS diagnosis, many adults were probably infected with HIV in their teens. There is also a significant population of adolescents and young adults that was infected perinatally. Due to advanced treatments, including antiretroviral medications, children have aged into adolescence and young adulthood.

The goals of Youth-Oriented Health Care Programs are prevention of HIV infection in at-risk youth; early identification of HIV-infected youth; supporting adherence to HIV care and treatment for HIV-infected youth; improved access to quality health care and social services; and promotion of positive development, including increased self-esteem and skills development. Grant funding supports the development of youth models that promote collaborations among providers; integrate prevention and care services; and provide services in safe, confidential environments. The target population is adolescents and young adults, ages 13-24, who have HIV or are at high risk for HIV infection. This population includes, but is not limited to: young men who have sex with men; lesbian, gay, bisexual, questioning or transgender youth; youth who use substances; and other young people at high risk. A description of funded program models follows.

Specialized Care Centers

Specialized Care Centers provide integrated, comprehensive health care and support services to address the needs of adolescents or young adults who have, or are at high risk for, HIV. In addition to providing comprehensive services on-site, the centers are responsible for developing linkage agreements to create a continuum of services needed by youth. Centers are funded to provide client recruitment; HIV prevention education; individualized risk assessment and health promotion; HIV counseling and testing; comprehensive medical services including HIV care and primary medical care; social work; case management and advocacy; supportive counseling; concrete supportive services (e.g., transportation, childcare, language interpretation); and peer support. In addition, programs provide mental health and substance use assessments with referral to or provision of treatment services, if indicated. All services are designed to promote youth self-esteem and build skills related to risk reduction and health promotion.

Youth Access Programs

Youth Access Programs provide low-threshold clinical services in accessible community-based settings to meet the immediate health care and social service needs of at-risk youth. In many cases, these needs are met before or concurrent with addressing issues related to HIV testing and treatment. Methods for implementing low-threshold clinical services include mobile multidisciplinary teams, part-time clinics in community-based settings, and medically equipped vans. Youth Access Programs have community partners who can reach the highest risk youth. Programs are funded to provide client recruitment; targeted HIV prevention and risk reduction services; HIV counseling and testing; immediate primary and preventive health care for acute illnesses; access to pharmaceuticals; pregnancy testing and family planning services; screening and treatment for sexually transmitted diseases (STDs), TB, and hepatitis; partner notification services; psychosocial assessments; and transitional case management.

Target Areas

Eleven Youth-Oriented Health Care Programs were established statewide in 2003. Target areas include communities in New York State with a high number of HIV/AIDS cases among adolescents and young adults, high rates of teen pregnancy, and high rates of STDs among persons ages 13 to 24.

Funding

A total of approximately $3.5 million in State funds supports the Youth-Oriented Health Care Programs.

Contact:

Family and Youth Services Section
Bureau of HIV Ambulatory Care Services
Division of HIV Health Care
(518) 473-5467

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Prevention Services For Women

Program Description

In New York State through December 31, 2003, 160,815 individuals have been diagnosed with AIDS. Of these individuals, 64,217 are presumed to be living with AIDS. HIV has increasingly become a woman's disease. Of the cases diagnosed in the State in the early 1980s, adolescent and adult women accounted for 9% of the total. Cumulative AIDS surveillance data for New York State show that 25% of AIDS cases reported through 2003 were among women. The proportion of newly reported AIDS cases among women has more than tripled in New York, rising from 12 percent in 1986 to 33 percent in 2003.

In New York, females now account for 48 percent of new HIV infections among teens aged 13 - 19 and 43 percent of new infections among young adults, ages 20-24. The concentration of the HIV epidemic among women of color is dramatic. African-American and Hispanic women together represent 86% of the 53,500 women who have been diagnosed with HIV and AIDS in New York. African American and Hispanic women represent more than 85% of the women who are presumed to be living and diagnosed with HIV or AIDS through December 2003.

The HIV/AIDS epidemic presents unique social, economic and public health challenges. Significant progress has been made in understanding the virus and in developing treatments to manage HIV disease and opportunistic infections. With individuals living longer, the challenge for providing prevention services to those infected and supportive services to continue in health care and receive other needed services to improve quality of life have increased. Women of color, poor women are particularly in need of comprehensive services to access a full range of clinical, mental, health and social services which will improve their well being and the overall quality of life for them and their families.

In 2003, funding to support HIV prevention services for women was awarded to twenty-eight contractors located throughout the State, including community-based organizations, hospitals, and community health centers. The Women's Services Unit provides program oversight, contract management and technical assistance to the providers participating in this initiative. Agencies selected to participate in this initiative are required to develop or enhance comprehensive HIV prevention and support programs for women, their partners and families.

The initiative is targeted to women, particularly women of color, at high risk for HIV infection and women living with HIV, their partners and families. Programs funded to provide HIV prevention services for women through this initiative will:

  • promote HIV behavioral interventions to initiate and to sustain behavior change over time and reduce the risk of HIV transmission or acquisition;
  • promote interventions to increase the motivation of women to know their HIV status; increase access to voluntary testing at community-based organizations and health care settings utilizing the latest testing technologies available and approved for use by the New York State Department of Health;
  • reduce perinatal HIV transmission by providing early access to primary prevention and HIV counseling and testing recommended for pregnant women and women of childbearing age;
  • increase awareness among women at risk for HIV and women living with HIV of how sexually transmitted diseases (STDs) increase the risk of HIV transmission and facilitate access to STD prevention, screening and treatment; and
  • recruit and engage women into comprehensive systems of HIV prevention, support and health care services.

Of the twenty-eight agencies selected to participate in this initiative, six programs are supported by CDC funding and provide services throughout New York City. Twenty-two agencies, including nine hospitals, eight health centers, ten community-based organizations and a county health department receive State funding to support HIV prevention services for women. These facilities are located through the State (including Manhattan, Bronx, Brooklyn and Queens; Albany, Buffalo, Rochester, Syracuse, Long Island and the Mid-Hudson Valley).

The key components/service areas of this initiative include: HIV counseling and testing in clinical, community-based, and outreach settings; targeted and enhanced outreach to recruit and engage at-risk and HIV infected women who are not engaged in ongoing prevention, care and/or supportive services; multi-session individual and group behavioral interventions targeted to women at-risk and women living with HIV to minimize future transmission or acquisition of HIV; strong referrals, linkages and follow-up to needed services for both at-risk and women identified as HIV positive.

Funding

Twenty- eight programs are supported by $4.7 million in combined State and federal funds.

Contact:

Women's Services Unit
Bureau of Special Populations
Division of HIV Prevention
(212) 417 - 4696

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HIV Services For HIV-Infected Women and Their Families

Program Description

The HIV Supportive Services for HIV-Infected Women and their Families Initiative strengthens and expands referral linkages between HIV counseling and testing programs and community-based health and social services for women and their families. The initiative represents a unique, jointly funded, public-private partnership with the United Way of New York City. The AIDS Institute provides programmatic oversight for this partnership and the United Way provides technical assistance and fiscal administration.

Ten community-based organizations are funded to provide family-centered case management, community follow-up, and support services to HIV-infected women and their families. In addition, a range of supportive services are provided to clients including: HIV prevention interventions for women at high-risk and HIV-infected women, child care, 24-hour crisis intervention, emergency financial assistance, housing placement assistance, transportation, individual and group counseling, peer support, and HIV prevention education.

  • The first five funded projects became fully operational providers of HIV case management and supportive services for HIV-infected women and their families in 1992 and have continued to expand their programs. In 1994, five additional projects were funded; a case management program in Central Harlem became operational in 1995.
  • By 2000, most projects were reaching their caseload capacity, providing case management and supportive services to approximately 965 index clients and approximately 1,131 family members. Supportive services are provided to all clients receiving case management, as well as to clients receiving case management through the COBRA Community Follow-Up Program. Six of the eleven agencies are COBRA Community Follow-Up Programs.
  • In 2001, the initiative was re-solicited and ten organizations were funded. Participating programs provide services to approximately 2,462 index clients and over 1,091 family members per year.
  • In addition to the supportive services listed above, all of the agencies provide permanency planning, legal, and mental health services on site, via consultants, or through linkage agreements.

Funding

This initiative is supported by combined State and federal funding of $2,031,000 and private funding of $100,000 from the United Way. Funds are currently distributed among ten programs providing services in the South Bronx, East New York, Central Brooklyn, North Brooklyn, Central Harlem, East Harlem, South Queens, and the Lower East Side of Manhattan.

Contact:

Women's Services Unit
Bureau of Special Populations
Division of HIV Prevention
(212) 417 - 4696

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Supportive and Legal Services For Families in Transition

Program Description

The Families in Transition Initiative provides supportive and legal services to stabilize and maintain families affected by HIV/AIDS, as well as to assist families in planning for the future care and custody of their children during parental illness and after the death of a parent. Future care and custody options include legal adoption, foster care, guardianship, and standby guardianship. The latter enables HIV-infected parents to designate a guardian who, at the discretion of the parent, assumes caregiving responsibilities for children during parental illness and after the parent's death.

Experience has shown that supportive and legal service programs for children, families and young people should be based on comprehensive, integrated models that promote a continuum of services and enable access to services via multiple pathways. Furthermore, supportive and legal services for HIV-affected families must be linked together and integrated with health care and other services in order to effectively support families in transition and enhance permanency. This initiative promotes a comprehensive and integrated model of service delivery and creates a continuum through strong linkages with health care and other service providers within the community.

A total of eighteen organizations are funded statewide, seven of which are for Family Supportive Services, ten for Family Legal Services, and one for both Family Supportive and Legal Services. Of the organizations funded, eight are located in New York City and ten are located throughout the rest of New York (Albany, Buffalo, Rochester, Syracuse, Long Island and the Hudson Valley Region). Funded programs are located within community-based organizations, child welfare agencies, legal services providers, and a hospital.

Not-for-profit legal service agencies are funded to provide legal assistance to HIV-positive parents, family members, and new caregivers in order to establish and maintain family stability. HIV-affected families face an array of problems and issues that can threaten the family stability and create barriers to accessing services and planning for the future care and custody of minor children. Legal assistance is tailored to the individual family's needs.

Social support programs are funded to stabilize and maintain HIV-affected families, as parents, their children, and other family members cope with the emotional and physical needs of living with HIV/AIDS. Services also are intended to promote the optimal physical and emotional development of children and adolescents and ensure that caregivers are supported in their efforts to smooth the transition children often experience when faced with the loss of a parent. Services include, but are not limited to, assistance to parents in disclosing their HIV infection to their children; counseling for family members to improve coping skills; education about the placement and custody plan options available to families; assistance in identifying an appropriate new caregiver; and activities to promote stabilization and build relationships between children and new caregivers.

Funding

The Families in Transition Initiative is supported by approximately $2.3 million in combined State and federal funds.

Contact:

Program Coordinator, Families in Transition
Family and Youth Services Section
Bureau of HIV Ambulatory Care Services
Division of HIV Health Care and Community Services
(212) 417-4764

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