Changing Times, Changing Lives: Transitioning HIV+ Adolescents to Adult Services

Background

HIV positive adolescents today face tremendous challenges as they mature to adulthood. Not only must they cope with the average worries of adolescence, including education, employment, relationships with family, friends, and significant others, but they must also balance a complicated medical regime including multiple medications and appointments with a wide range of providers. By the time they reach late adolescence, young people have grown intimately accustomed to their providers; in many cases, these providers comprise an entire support system.

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Issues

Despite the advantages of the pediatric environment, transition is a critical step in the development of HIV+ adolesents. Not only do funding issues inhibit many pediatric providers from retaining older clients, but there are countless psychosocial issues wrapped up in the issue of transition. The near-familial relationship with pediatric providers presents some psychosocial issues that may inhibit the adolescent's development; an adolescent would be much less likely to disclose sexual activity or experimentation with substance use to a social worker they viewed in a parental role, leaving them less likely to discuss any of these difficult issues with an adult. In addition, encouraging a young person to transition speaks to long-range goals and supports future orientation, helping the young adult to move away from clinics designed to appeal to children. Working with adult providers encourages emotional development and maturity; as non-HIV positive children break away from their parents as a critical part of identity formation, HIV positive children can do the same with their health care providers. Adult health care will ideally assist in that empowerment, and growth away from a more overprotective, controlling pediatric environment. If the adolescent is physically and mentally healthy enough to undergo the transition, a collaborative effort between the pediatric and adult providers have the potential to actually facilitate the process of 'growing up.'

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What We're Doing

Transition Conference
In July 2003, the Partnership for Family Health (formerly the Northern Manhattan Women and Children HIV Project), in conjunction with the Children's Hope Foundation, Columbia University College of Physicians and Surgeons and the New York/New Jersey AIDS Education and Training Center, hosted "Changing Times, Changing Lives: Transitioning HIV+ Adolescents to Adult Services," one of the first conferences of its kind in New York City. In collaboration with adolescents, caregivers, and professionals, this conference was developed to address the issue of transition for the target audience of service providers working with HIV+ adolescents. Please see below for more information about this conference.

Transition Consortium
From the success of this conference, the Partnership for Family Health and the Children's Hope Foundation have founded the Transition Consortium, a collaborative of working groups around the city focusing on these issues. Including adolescent, pediatric and adult providers, the Transition Consortium is made up of four workgroups aimed at addressing, and proposing approaches to, the issues of HIV+ adolescent transition. The groups are as follows:
-Social Work and Adolescent Development
-Medical Care
-Entitlements/Resources
-Material Development

To join the Transition Consortium, please contact Saba Jearld at 212.342.5164 or by email.

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Changing Times, Changing Lives: Transitioning HIV+ Adolescents to Adult Services

Overview After a brief review of the few long-term studies of HIV positive young people, attendees heard from Dr. Patience White, Executive Director of the Adolescent Employment Readiness Center in Washington, D.C., who works with adolescents possessing a wide range of chronic health care conditions and disabilities in order to improve their job readiness and life skills. Dr. White focused on the tremendous amount the HIV community has to learn from other disease communities, who have been managing the issue of transition for years. Attendees then heard from a panel of adolescents who brought to light just how difficult transition is - on both the logistical and emotional levels. They also suggested that much of the work needs to be accomplished on the provider level - the process of letting go for the pediatric providers and the welcoming process for the adult providers. Breakout sessions focused on strategies for successful transition within the fields of medical care, social work/case management, adolescent development, and entitlements. In the afternoon, all attendees heard presentations from the other breakout sessions to continue the dialogue amongst the larger group.

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BREAKOUT SESSION RESULTS:

Transition and Medical Care

Summary
Overall, the medical care session focused on bridging the gap between adult and pediatric providers, two groups frequently pitted against each other in terms of funding and numbers of clients. Because pediatric providers often times have the advantage of knowing patients since birth, in addition to having a smaller case load, they have more time to develop trusting relationships, a privilege not afforded overworked adult clinics without consistent patients. Despite numerous challenges, the group felt that through concerted efforts of communication, relationship-building, and keeping the focus on the best interests of the adolescents, successful transition can be achieved.

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Transition and Social Work

Summary
The social work session focused heavily on the connection between the mental health professional and the client. Despite heavy case loads and significant work-related stress, social workers nurture lasting relationships with clients that are difficult to sever. While preparing the adolescent for the transition through life skills training and expectation management, the social worker also needs to set boundaries and process their own difficult emotions surrounding the experience.

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Transition and Adolescent Development

Summary
The adolescent development session took a wholly positive approach - as many of the session attendees were familiar with adolescent issues, they brainstormed and discussed strategies specifically relating to transition, and then took it a step further to talk about how those strategies would be evaluated. Beginning with the adolescent, both providers and caregivers have to focus on empowerment, which is a multi-step process - both managing the expectations of the adolescent and setting goals, but also equipping that youth with the skills to achieve. Meanwhile, the group stressed the need to take into account the emotional, psychological and intellectual growth of this age group. On a provider level, the focus also needs to be honed onto the adolescent, realizing how the culture of the different medical settings affect an adolescent, from his or her own comfort with psychosocial counseling to their ability to keep appointments. Overall, this session stressed the power of collaboration between pediatric and adult providers. Not only would such partnership maximize medical efficacy, but it would also reduces psychological stress.

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Transition & Entitlements, Resources & Advocacy

Summary
This session was the one session in which everyone agreed on an overwhelming lack of education. Whereas many conference attendees are comfortable with issues of adolescent development, education, and other adolescent topics, entitlements remains a challenge. Constantly changing rules and a confusing and unfriendly government system are enough of a challenge on their own - add in the burgeoning independence of a young adult and it becomes even more difficult. However, the resources exist in New York to help everyone navigate this system. You just have to be prepared, do your research, and start early. Please see below for a very brief list of resources.

- Public Assistance (PA, Welfare), the Division of AIDS Services (DAS), Supplemental Security Income (SSI), and Social Security Disability (SSD) are four of the government benefit programs for which the youth might be eligible, and you cannot assume coordination. There is no longer an automatic link between public assistance and Medicaid, therefore, you must create that link yourself.

- New York City helps HIV-positive people who have certain symptoms and little or no income by giving higher welfare amounts for their rent (rent enhancement) and by providing benefits and services through a special unit of the City's Human Resources Administration (HRA) called the Division of AIDS Services (DAS).

- If the youth is not symptomatic, after they are 18 they are eligible to get regular public assistance (PA) which provides cash assistance, food stamps, and Medicaid to people with little or no income. A youth can apply for PA at their local Income Support (IS) center. To find out where your local center is, call the HRA helpline at 718.291.1900.

- Other resources to help you negotiate the entitlements maze include:
• East Side, Manhattan: Mt. Sinai, REAP (Resources, Entitlements and Advocacy Program)
• Bronx: the Adolescent AIDS Program at Montefiore Hospital
• City-Wide: the DAS' help line at 212.645.7070
• Lower Manhattan: the AIDS Service Center of Lower Manhattan
• Maternal/Pediatric/Adolescent HIV Program at St. Mary's in Brooklyn, Mary Immaculate in Jamaica, and St. John's Queens in Elmhurst

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Conference participants praised the conference for its 'good speakers,' 'good networking opportunities' and the concrete, applicable strategies developed in the smaller sessions. The Partnership is looking forward to developing more tools to assist in the transition process and incorporating the suggestions of participants, including engaging more adult providers, focusing on other psychosocial issues, incorporating the topics of adherence and disclosure, and many more.
Please contact us to receive conference materials or to be notified of upcoming events and opportunities.

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Contact

ph: 212.342.5164
»email