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The Road to Successful Adulthood: FMHI Lays a Pathway for Youth and Young Adults with Serious Mental Illness

Principles Behind Developmentally-Appropriate Services for Youth and Young Adults with SED/SMI

1. Engage young people through relationship development, person-centered planning, and a focus on their future.

2. Tailor services and supports to be accessible, coordinated, developmentally appropriate.

3. Acknowledge and develop personal choice and social responsibility with young people.

4. Ensure that a safety net of support is provided by a young person’s team, parents (when appropriate) and other natural supports.

5. Enhance young persons’ competencies to assist them in achieving greater self-sufficiency and confidence.

6. Maintain an outcome focus in the Transition to Independence Process (TIP) system at the young person, program, and system levels.

7. Involve young people, parents and other natural and community partners in the TIP system at the practice, program and system levels.

“He’ll grow out of it,” “it’s just a phase” and “this too shall pass” are words of encouragement most parents will hear from time to time as they struggle to make it through their children’s adolescent years. For many parents, those words hold true, but for the 3 million transition-age youth in America today who are struggling with Serious Emotional Disturbance or Severe Mental Illness (SED/SMI) - the only thing they may grow out of is the developmentally appropriate and relevant services they received from child-serving organizations such as schools, foster care, mental health, detention and corrections. Once 18, and without appropriate services to successfully transition to independent adulthood, these youth are faced with many risks and challenges that hinder successful outcomes.

“Young adults with SED/SMI have the poorest outcomes of all people with disabilities as they enter adulthood,” said Jan Richter, Advocacy Director of Connect for Kids, an organization dedicated to ensuring that young people have the supports, opportunities and services needed to prosper and contribute where they live, learn, work, play and make a difference.

" They also have serious gaps,” added Richter, “especially in developmentally appropriate services, including mental health services, once they reach age 18. It doesn’t have to be this way.”

Richter recently moderated a conference call among leaders in the field of mental health who focus on improving outcomes for youth and young adults with SED/SMI and their families.

Dr. Hewitt (Rusty) Clark, director of the National Center on Youth Transition (NCYT) at CFS/FMHI, the only national technical assistance center that is exclusively focused on improving transition practices, systems and outcomes for this population, was among the leaders asked to participate.

Additional participants included representatives from the Partnerships for Youth Transition (PYT) Initiative, funded from 2002-2006 by the Substance Abuse and Mental Health Services Administration (SAMHSA) to develop and implement transition programs for youth with SED/SMI age 14 to 25. During the funding cycle, Clark and the NCYT team assisted the five demonstration sites in their planning, development, implementation, and refinement of transition systems for youth and young adults.

Clark, along with Nicole Deschenes, Co-Director of the NCYT, DeDe Sieler, head of the Washington State site, and Melanie Green, Consumer Support Specialist for the Clark County Regional Support Network in Washington State, gave an idea of the breakthrough work done at the PYT sites and the driving principles behind developmentally-appropriate services that the PYT demonstration projects, and others, have relied on to improve services and to align programs, community systems, partners and policies to support young people’s developmental transition to adulthood (see guidelines at side bar).

“The SAMHSA grant provided funding in a way that allowed the process of engaging young people to be much more flexible,” said De De Sieler. “When staff are allowed to engage with young people at their own pace, the relationship between staff and youth is much stronger.”

“By framing goals in ways that are about the young person’s future, the work automatically focuses on the positive, something hopeful, which yields more active engagement,” added Rusty Clark. “Also, this future’s focus encourages an emphasis on youth strengths rather than deficits.

Melanie Green added that the location and setting of the program is very important. She discussed the importance of having conversations in a relaxed, age appropriate, appealing environment where youth want to be. “We learned from youth involved in planning that they didn’t want to go to the community mental health center because they wanted a more stigma-free setting. We have conveniently located a building in our community, a youth house open to a number of programs for youth and young adults. With programs based here, conversations can happen over a pool table or checker game, and you actually get more work done because youth love the environment.”

“We recognize that these individuals are at a developmental level where they want to call the shots, to make decisions,” said Dr. Clark. “We must create opportunities for youth to make decisions, try out problem solving, start learning to evaluate the impact of their choices/actions on themselves and others. It a tough balance – between maximizing success through helping them by your teaching, cajoling, support, and counseling, but also letting them encounter natural life experiences for themselves, just like their peers. This is a time to try things out, a period of recovery, but it is even more a period of discovery.”

"The key is natural settings and teachable moments,” said Melanie Green. “When you’re out with youth in community settings, something comes up, so you teach.”

Melanie provided a great example.

"We had a young lady in a steering committee meeting. We were talking about sustainability after our grant money was going to end. This young woman was very upset about the possibility that the program would go away. She expressed herself in a way that, in a lot of situations, she probably would have been asked to leave and come back after she was able to calm down. But we allowed her to speak when she was upset, recognizing how great it was that she was trying to advocate for herself and her peers. She was recognized for her assertive skills rather than being emotionally unregulated. We have subsequently worked with her in learning even more effective assertive and self advocacy skills. Eventually, this young woman was honored by her community for her advocacy work. This was a successful example of teaching in the moment through everyday interactions.”

In its analysis on the effectiveness of the PYT approaches, NCYT found that young people with SED/SMI who completed at least one year of the PYT programs showed positive movement in education and employment, and a reduction in interference in their lives from their mental health and drug or alcohol abuse.

Clark suggested that states and the federal government need to do more in deliberate efforts to address the transition support of the youth and young adults they serve, including:

1. Extend continuity of care to the ages of 25 or 30. Eliminate arbitrary age-related barriers to the continuation of services by adjusting official definitions of SED/SMI.

2. Encourage states to extend Medicaid coverage beyond age 18. Continuity of care also becomes an issue when Medicaid cuts mental health services to young adults as soon as they turn 18. All of sudden, the participant must find another mental health provider, or worse—the participant is left without a mental health provider.

3. Take the lead in acknowledging the age-specific needs of young adults. More transition support services are needed so participants can tailor appropriate treatment plans that address their critical health and living needs. The services offered by the PYT sites have helped transition-age youth attend college, secure first apartments, and foster mental well being.

4. Fund more formal research on best practices in serving transition-age young adults with SED/SMI.

5. Require states to: a) report the number of 16-21 and 22-30 year-olds served through federal block grant funding; b) describe the services specific for these age groups, and c) describe plans for services improvement.

"We must better assist these young people with making a successful transition into adulthood, with all of them achieving, within their potential, their personal goals related to employment, education, living situation, personal effectiveness, and community life functioning,” said Dr. Clark. “Helping them to become productive resilient adults is a win-win situation for all involved.”

For additional information about the work of the center, contact Hewitt B. “Rusty” Clark or Nicole Deschenes regarding national initiatives at clark@fmhi.usf.edu, or deschenes@fmhi.usf.edu.

 

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