Lost in transition: Emerging adults and their families face many challenges

For two years, I have been working at the Center of Prevention and Evaluation (COPE) research clinic at the New York State Psychiatric Institute, which follows adolescents at risk for developing psychosis. I have worked with young adults who are on the cusp of their first psychotic break and listened to their stories -- some hopeful, many others filled with confusion, sadness and feelings of alienation.

Adolescence is a period of major development, when many biological, psychological and social changes occur. Developmental psychologist Erik Erikson defined adolescence as a stage that involves grappling with identity formation and role development. The task of the teenager is to individuate from family and become a member of wider society. In the stage that follows adolescence, young adults seek companionship and love and consider parenthood. But at COPE, I see young adults who because of their symptoms and their difficulty achieving developmental milestones -- finding work, establishing relationships, living on their own -- experience a sort of prolonged adolescence.

For many teenagers and young adults struggling with severe mental illness, achieving these developmental milestones is a big struggle. Research shows that mental health problems increase during adolescence, when more complex disorders like psychosis begin to emerge. As these individuals reach young adulthood, plans for separating from family, establishing meaningful relationships and finding a vocation become difficult because these young adults often rely on their families to take care of them.

At the same time, they also face the transition from child-serving to adult-serving health care systems, with their rigid age boundaries. This health care transition often coincides with developmental transitions and increases the chances that youth with mental health problems will get lost in the transition between systems of care. How are families, particularly those from a lower socio-economic background, able to financially provide care for their children, especially if there are no programs to ease the transition to adult services?

In the United States, many children and adolescents with disabilities qualify for supplementary security income (SSI). But in order too continue to qualify for benefits as an adult, those who received SSI as children must go through a process of "redetermination" of eligibility. Johnson and colleagues interviewed youth and their families who had gone through this process and found limited understanding about the process of redetermination and the steps required. Families and young adults also expressed a lot of confusion about the different types of benefits they could receive. The findings, published in a 2007 issue of Policy Research Brief from the University of Minnesota, also showed that health care providers and school counsellors also had limited knowledge about this transition in support.

Educating families and health care providers can make the difference in determining whether young people can keep their status and financial and medical support as they transition into adult health care systems. SSI benefits are necessary for families living on limited means -- they need the money to pay for rent, treatment and basic living expenses. One common fear for young adults, as well as their families, is that if they work, they may lose their SSI benefits. This fear is a disincentive to employment, so these young adults are less likely to get work and integrate into society, thereby failing to achieve important developmental goals.

I was first introduced to the phenomenon of psychosis as a first-year undergraduate when I volunteered at the Center for Addiction and Mental Health in Toronto. I ran yoga and meditation groups with patients, many of them young adults, in the early psychosis unit. I remember thinking how scary it must be to be a psychiatric inpatient. Yes, these young people were there to get help, but I wondered what happened after they left the hospital. Were they able to resume their lives?

In a study published in 2007 in the Journal of Behavioral Health Services and Research, Pottick and colleagues found that for transition-age youth with mental health problems, the rate of admission to outpatient services declined, while the rate for inpatient admission increased dramatically. As more youth are hospitalized and treated in an inpatient setting, they are at increased risk of trauma and misdiagnosis, as well as inordinate reliance on antipsychotics, with their marked side-effects.

At the COPE clinic, where I work with adolescents at risk for psychosis, we strive to normalize and de-stigmatize what the young adults we see experience. We provide clinical services for young adults and their families, in the hope that if they do become psychotic, they will have a more positive outcome and trajectory to recovery. We need better collaboration and co-ordination between adolescent and adult systems of care so that young adults facing the transition don't fall through the cracks during one of the most important developmental periods of their lives.

Shelly Ben-David is a licensed social worker for the State of New York. She is also research co-ordinator at the Center of Prevention and Evaluation at the New York State Psychiatric Institute/Columbia University.