by Wayne Munchel, LCSW   0 Comments

 

When youth labeled with a serious mental health diagnosis qualify for federal disability benefits (SSI – Supplemental Security Income or SSDI – Social Security Disability Income), does it represent a step toward self-sufficiency or a step down a slippery slope into perpetual disability and poverty? When they deem it appropriate, well-intentioned Transitional Age Youth (TAY) program staff work hard to establish SSI/SSDI for their young adult clients by supporting the finding of “complete and total disability.” What short and long term impacts does this determination have on the life trajectory of emerging adults? To what extent is it both boon and bane?

Perhaps no other decision by young adults, their families and providers has a more significant impact on youth with serious mental health conditions. (Studies indicate that less than 1% of people who are placed on SSI come off of it at a later point.) On the one hand, SSI/SSDI provides the critical means to meet basic survival needs of food and shelter. For the large percentage of impoverished young people, and especially foster youth aging out of the system, SSI/SSDI can make the difference between homelessness, hunger and exposure to further traumatization. On the other hand, it can frequently serve as a disincentive and deterrent to a youth’s career explorations and undermine their sense of self-efficacy. A key developmental task for young people is thought to be about discovering who they are and where they belong (i.e. identity formation). Being assessed as “completely disabled” can have a profound impact on this formative process.

According to reports, disability rates for the TAY age group have increased significantly. Although these young people report wanting to work and see themselves as able to work, they also indicate that they do not receive the support they need to work. Our communities, colleges and labor workforce are deprived of the considerable talents, contributions and potential of these young people. More importantly, the young people themselves miss out on the opportunities to learn skills and develop strengths through struggles, and never access the protective factors and meaningful roles that school and work can offer.

Ditching the Snare: SSI as a Step Toward Independence

What can be done? The following recommendations are offered for consideration:

  • Engage young people and their families in exploring questions about what SSI/SSDI means to them and their futures. Fully discuss and frame any disability benefit discussions with youth, young adults and their families as:
    1. An investment in the young person’s ongoing development, “discovery” and recovery
    2. A disability status for now – everyone experiences changes and fluctuations in their health and well-being over time. (We anticipate progress and growth.)
    3. An opportunity to mature and find their paths as young adults. Most TAY don’t “emancipate” until well after their 30th birthdays and require prolonged financial and emotional support to find their ways to stable employment, housing and relationships. For youth living with a mental illness who are also foster youth or coming from low income backgrounds, this uphill path can be much harder, but is definitely doable.
    4. An “emerging” identity, still under construction, but does not signify that they are “completely and totally disabled” – not now, not ever.
  • Provide active and ongoing benefits counseling. Ensure that youth and their families are familiar with SSI incentive programs such as Ticket to Work. Inform and educate TAY about how earned income will affect their benefits (if you work and collect benefits, you will always have more money than receiving benefits alone).
  • TAY programs should establish Career Development (Supported Education + Supported Employment) as priority purposes, not as an afterthought or something that can happen after symptoms are eliminated. Staffing patterns need to reflect this commitment (Having a part-time Job Developer/Van Driver won’t cut it.) Mental health symptoms, impairments and deficits should be addressed as barriers to community inclusion and full participation. Keep in mind the precept of the “dignity of risk and right to failure.”
  • Never succumb to the “soft bigotry of low expectations.” Whatever the level of functional impairments, keep youth engaged in a futures-oriented process that expects growth and opportunities.

What are your thoughts?

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by Wayne Munchel, LCSW   0 Comments

I caught up to Early Psychosis services expert, change agent extraordinaire and overall interesting person, Nev Jones, after her return from Milan, Italy where she participated in the International Early Psychosis Association (IEPA) conference. Nev is the Director of Research at Felton Institute CCOR (Client Centered Outcomes Research in Public Mental Health).

So Nev, what were some of the more interesting trends you saw at IEPA?

It’s never possible to attend everything you want to with multiple concurrent sessions, but there was a strong undercurrent of research focused on adverse childhood experiences (ACEs), including both individual trauma and structural adversity (for instance, growing up in a disadvantaged neighborhood). Many of these presentations focused on the contributions of ACEs and other social factors, including migration, to later development of psychosis. (While still relatively under-acknowledged in the US, the relationship between early trauma and psychosis is now empirically well established and it’s critical that US clinicians start building trauma-informed approaches and trauma work into psychosis treatment programs. See a brief and accessible overview of the trauma-early psychosis research literature here).

In terms of contributing factors to the development of psychosis, there were definitely the more conventional presentations focused on biology. However, Mark van der Gaag and his lab (Amsterdam), presented a series of studies concerning repeated social stressors. By creating a “virtual café” they exposed subjects to an environment where everyone is a different race, and appear unfriendly or hostile. I also saw a great presentation on Melbourne-based researcher Sarah Bendall’s important work developing and evaluating TRIPP (trauma informed psychotherapy for psychosis), one of the first attempts to develop therapeutic interventions focused on trauma within the context of recent onset psychosis.)

Sounds interesting. What else did you learn?

This may at least partly be due to the fact that early psychosis services are much newer in the US than in countries like Canada and Australia, but I saw a range of innovative, outside-the-box projects that one just doesn’t see here in the States. For instance, an early psychosis intervention revolving around participation in adventure sports (e.g. rock climbing, white water rafting), and a martial arts intervention for at-risk youth. What I like about these sorts of projects is that they help move us away from the conventional symptoms focus of most early psychosis services, and reorient to the reality that most young people are probably far more interested in navigating a series of Class 4 rapids with a group of peers, than sitting around in a circle at a mental health center in group therapy discussing their coping strategies. A lot of processing, and a lot of healing, happens indirectly, by forging new relationships, tackling new challenges, and collaboratively engaging in activities that are actually legitimately cool.

Very cool. Did you present on anything?

I did two presentations as well as a poster. The poster focused on young people’s experiences of sexuality and the sex- or gender-driven themes so often present in voices or belief systems. My own research has found that around 50% of service users experience some sort of sexual content, including voices that talk about sex, unusual (positive and negative) erotic experiences, and/or themes related to past sexual trauma. It’s critical that these experiences are validated, discussed and explored, but often these sorts of themes leave clinicians feeling uncomfortable and so they simply avoid the subject. I also presented on a pair of twin SAMHSA-funded higher ed toolkits that we developed at the Felton Institute (“Supporting the full inclusion of students with early psychosis in higher education”) with extensive student and family input. The toolkits themselves are helpful (actually long overdue!) but still really just a first step in addressing the substantial educational disparities and barriers that students with early psychosis face. We’re now meeting with city and community college staff and trying to take this to the next level in terms of resources, trainings, and program development.

Thanks, Nev!

Nev is the director of research at Felton Institute CCOR (Client Centered Outcomes Research in Public Mental Health) and an active early psychosis services researcher and change agent. For more on Nev’s work on peer leadership in early psychosis see an archived webinar here.

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