Addressing multiple systems' failures: one agency's approach for working with youths with autism involved in multiple service systems.

Human service systems nationwide are struggling to support youths with autism spectrum disorders (ASD) through traditional care models. Given ASD's growing prevalence, now impacting 1 in 150 children, categorical service systems, by nature of their design, are not conducive to this population's multifaceted treatment needs.

These youths frequently are referred to our organization, NHS Human Services in Pennsylvania, as a last step before entering the system's "deep end," secure state-operated youth development centers where youths do not receive treatment tailored to their ASD diagnosis. The majority of youths with ASD also have desperate circumstances of multiple failed placements, and many quickly have progressed into more restrictive levels of care.

Yet NHS has found an effective way to care for this population that brings disparate service lines together. Below we further explain the challenges these youths face along with our strategy for helping them.

Multiple Systems' Failure

Youths with ASD often are involved in multiple service systems. The mandates of the juvenile justice and child welfare systems involve youths' safety, security, and accountability for their actions. Traditional behavioral health treatment systems focus on recovery-oriented therapeutic and behavioral interventions. These primary systems address the same presenting behaviors from vastly different philosophies.

Unfortunately, ASD's range of behaviors often is misunderstood, and traditional treatment protocols often are ineffective or even contraindicated. Subsequently, presenting behaviors are misdiagnosed, resulting in conventional interventions that lead to inappropriate treatment and adverse outcomes. Many youths referred to NHS are moving deeper into an increasingly ineffective service system ill equipped to meet their needs.

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The clash of cultures between various systems caring for the same individuals can influence continuity of care and ultimately negatively impact outcomes and waste resources. This systematic discord extends into the treatment milieu. For example, NHS's juvenile justice services stress a normative culture in which all staff members and youths contribute ideas to actively develop group and individual norms. However, ASD characteristics (e.g., poor social skills) often present an immediate conflict with the group environment.

Because of these systems' collective failure, youths with ASD often are bullied, labeled, subject to multiple failed placements, and placed in restrictive levels of care. Within the juvenile justice and child welfare systems, the more restrictive the setting (such as state-operated youth development centers), the less likely youths will receive appropriate treatment. Research has shown that youths with ASD are seven times more likely to become involved in the legal system by age 21 than their non-ASD diagnosed peers. (1) In many cases, these youths are misclassified as sexual offenders when they simply lack mastery of social boundaries and nuances.

Our Solution

A recent change in corporate leadership and a strategic commitment to pursuing the best emerging technologies in autism treatment moved NHS to reevaluate its residential programs for these youths. NHS's organizational structure now integrates juvenile justice and child welfare residential operations with our community-based autism program, which serves more than 2,200 youths and families.

NHS held frequent meetings to combine the program strengths of its behavioral health, juvenile justice, and child welfare services at the NHS Academy, which offers nine specialized residential programs for delinquent youths. Below we explain how NHS modified and integrated these disparate services to meet the needs of youths with ASD.

Targeting staff expertise. Certified applied behavioral analysis (ABA) clinicians mentor students instead of using a classroom-training approach. Dedicated juvenile justice staff members, at first resistant to this change, eventually embraced this model. Behavioral modification techniques consistently demonstrated improved outcomes for youths with ASD, as well as for other Academy students.

Providing specialized ASD training. Treatment failures, unique for each youth at the Academy, are the focus of specialized training for NHS's staff. NHS teaches new staff members a specialized educational curriculum and approach based on our experience operating eight licensed private academic schools for students with ASD.

Conducting grand rounds. A thorough service blueprint process for each youth is the starting point for formulating a treatment plan, as well as identifying specialized resources that need to be developed to enhance a youth's opportunities for success. Experts in intellectual and developmental disabilities, psychology, ASD, behavioral health, and juvenile justice conduct grand rounds to offer a broad-based view from outside the residential setting about how to best meet each individual's needs.

Emphasizing collaboration. NHS's executive leadership created a forum to continuously develop, evaluate, and modify each youth's individual treatment plan. Members of the comprehensive treatment team regularly meet to review program components:

* ASD treatment

* Juvenile justice requirements

* Results of functional behavioral assessments

* Results of formal tests

* Treatment of co-occurring disorders

* Behavior modification goals

* Crisis prevention strategies

* Educational objectives

* Aftercare planning

Teaching how to transfer skills. NHS learned that training youths with ASD to rely solely on a specific individual does not provide the mastery and generalization of skills necessary for long-term skill acquisition. Thus NHS focuses on concrete, measurable skill development. Youths with ASD, by nature of their disability, are driven by a concrete understanding within an abstract world with an ever-evolving set of social norms. NHS teaches youths compensatory strategies to successfully transfer skills to a variety of social and work situations.

Meeting youths' educational needs. Proven educational strategies from NHS's community-based autism schools are applied to develop a specialized educational program that recognizes individuals' unique needs.

Planning for aftercare. Sustaining positive outcomes for youths with ASD requires significant planning and effort with increased attention to successful reintegration into home, school, and community. Ongoing consultation between residential care staff and community-based providers establishes key relationships needed to bridge the gap between these levels of care.

Conclusion

At NHS a core team of diverse experts have dismantled the barriers and walls of categorical service structures for youths with ASD. NHS's approach applies the best of each system's expertise to comprehensively address the needs of youths with ASD and their families.

Karen Markle, MA, is Corporate Director of Autism Services at NHS Human Services in Pennsylvania. Carl E. Clark II, MA, is Senior Vice-President at NHS Human Services. For more information, write to Clark at NHS Human Services, 1320 Linglestown Rd., Harrisburg, PA 17110, or cclark@nhsonline.org, or call (717) 441-3700.

Reference

1. Curry K, Posluszny M, Kraska S. Training criminal justice personnel to recognize offenders with disabilities. Office of Special Education and Rehabilitative Services News in Print 1993; Winter.

BY KAREN MARKLE, MA, AND CARL E. CLARK II, MA