Positive Approaches Journal, Volume 10, Issue 3

Volume 10 ► Issue 3 ► November 2021

The Collaborative Capacity Building Initiatives:
A Joint Project of the Office of Developmental Programs (ODP) and the Office of Mental Health and Substance Abuse Services (OMHSAS)

Gregory Cherpes, MD

Abstract

Individuals with intellectual disabilities and/or autism (ID/A) who also have a concurrent mental health condition are often referred to as having a dual diagnosis. Though estimations of the prevalence of dual diagnosis vary over a wide range, the prevalence of 35% is a commonly referenced value.^1,2,3 The professional organization National Association for Dual Diagnosis (NADD) has published this estimation in their discussion of dual diagnosis.⁴ A report on National Core Indicator ^TM data using In-person Survey data that was collected in 2017-18 by 35 states and the District of Columbia showed approximately 48% of the 22,513 survey respondents, 10,729 identified having both an ID diagnosis and at least one of the following diagnoses: mood disorder, anxiety disorder, psychotic disorder, or “other mental health diagnosis.”⁵ The percentage of state respondents for whom a dual diagnosis was reported ranged from 34% to 64%.

Regardless of the specific percentage of individuals affected, such cooccurrences are significant and reflect significant challenges for individuals to receive comprehensive and inclusive community-based resources. Despite the notion of dual diagnosis representing on many levels an integrated construct from which to approach the support of an individual with ID/A, the support systems themselves and individuals with mental health conditions are often distinct and separate systems.

In the Commonwealth of Pennsylvania, the Department of Human Services’ Office of Developmental Programs (ODP) and Office of Mental Health and Substance Abuse Services (OMHSAS) have a long-standing partnership in recognizing the importance of collaboration. This article focuses on some of the ways that the Offices have been able to collaborate with the goal of building capacity throughout the commonwealth and among a variety of stakeholders.  Specifically, the focus will be on activities that have been supported at least in part by the Money Follows the Person (MFP) program and have contributed to the Collaborative Capacity Building Initiatives.

Collaborative Capacity Building Initiatives

First authorized in 2005, the Money Follows the Person (MFP) demonstration supports state efforts for rebalancing their long-term services and supports system so that individuals have a choice of where they live and receive services.⁶

The goals of the MFP grant program include:

·         Increase the use of home- and community-based services (HCBS) and reduce the use of institutionally based services

·         Eliminate barriers that restrict the use of Medicaid funds to let people receive long-term care in the settings of their choice

·         Strengthen the ability of Medicaid programs to provide HCBS to people who choose to transition out of institutions; and

·         Put procedures in place to provide quality assurance and improvement of HCBS.

During the 2016-2020 funding cycle for Money Follows the Person, ODP and OMHSAS partnered to create the Collaborative Capacity Building Initiatives. This was a series of projects with the focus on individuals with complex needs due to the presence of ID/A as well as mental health needs. These efforts were foundational in establishing enhanced communication and interface among the support network necessary to increase capacity to serve individuals with complex needs in integrating settings. Staff from ODP and OMHSAS, including Pennsylvania’s State Operated Facilities, along with community providers of various backgrounds from a range of integrated settings and behavioral health managed care organizations all participated in training and educational activities, building toward a transdisciplinary framework for support.

By design, the components of the collaboration were selected to:

Annual Dual Diagnosis Conference

Beginning in 2017, ODP and OMHSAS collaborated to host an annual conference focused on topics pertinent to supporting individuals who are dually diagnosed. The conference has been held either independently or in conjunction with ODP’s Everyday Lives Conference.

Professional Conference Series

This series of single-day sessions brings experts from various fields to provide specialized opportunities for clinicians in practice and in training, such as psychiatric residents, certified registered nurse practitioners, registered nurses (RNs), licensed practical nurses (LPNs), social workers, behavior specialists and direct support professionals (DSPs). Through a variety of topics, the series provides enhanced exposure to and education about the needs of individuals with I/DA and mental health diagnoses. As with many of the initiatives, the forum also provides attendees with the opportunity for networking with other service professionals. Topics have included:

Mental Health First Aid

Mental Health Frist Aid⁷ is a standardized, 8-hour, in-person training course that teaches people how to identify, understand, and respond to signs of mental illnesses and substance use disorders. This course has long been in use in Pennsylvania and has been well supported by OMHSAS prior to these initiatives. The Collaborative Capacity Building Initiatives strived to bring this training to the target audiences of individuals with I/DA, families, DSPs, supports coordinators (SCs), HCBS service providers, and State Operated Facilities with the goal of increasing awareness and capacity to recognize signs and symptoms of mental illness. No modifications were made to the standard curriculum and topics covered included anxiety, depression, psychosis, and addictions. The instructors who provided the course for this initiative did have experience supporting individuals with I/DA, however.

Dual Diagnosis Curriculum

Developed as a collaboration between ODP, OMHSAS and the commonwealth’s Health Care Quality Units (HCQUs), the Dual Diagnosis Curriculum consists of 20 lessons for DSPs, SCs, and other stakeholders. The lessons have been recorded as online modules and are available on the ODP website, www.MyODP.org.

Functional Behavior Assessment (FBA) Training

An interactive, self-paced, virtual FBA training was developed by Pennsylvania’s Bureau of Supports for Autism and Special Populations as a replacement for the previously established train-the-trainer model. The training content includes assessment and replacement of challenging behaviors, as well as development of a treatment or behavior support plan that can be used across settings and across the lifespan. Consisting of eight online modules, the course is responsive to the individual learner’s progress on tests and quizzes throughout the training. The training offers traditional and fast-track options, dependent on test/quiz scores. Becoming available in 2020, the virtual training allowed for continuity during the COVID-19 pandemic in a way that would not have been possible with the previous in-person training process. The FBA training is currently available on the ODP website, www.MyODP.org.

Capacity Building Institute

Named after the overarching collaborative initiatives, the Capacity Building Institute (CBI) is jointly guided by ODP and OMHSAS to provide broad, in-depth educational experience to a range of professional stakeholders who support individuals with I/DA and mental health conditions. The course occurs 2 days per month over a period of 9 months. Through didactic, experiential, and small breakout group discussions, CBI offers high level education with a focus on best and promising practices from multiple perspectives in supporting individuals with complex needs. Attendees represent a wide spectrum of professionals and include residential service providers, behavior specialists, practicing clinicians, managed care organizations, state hospital staff, state operated intermediate care facility staff, residential treatment centers, HCQUs, Autism Services, Education, Resources, and Training Collaborative (ASERT), as well as staff of ODP and OMHSAS.

The goals of CBI include:

As noted above, a key component of CBI beyond the educational experience is the opportunity to develop a statewide cohort of individuals and systems becoming better equipped to effect change on micro and macro levels. The first cohort of attendees began in 2016. CBI is currently supporting its fifth cohort with plans to begin recruitment for the sixth cohort in early 2022. The core curriculum has developed over time and has been informed by the attendees. Numerous attendees have contributed to the education of the participants as subject matter experts.  Curriculum topics have included:

In the small group breakout discussions, which run throughout the duration of the institute, participants focus on and discuss complex and challenging situations, often applying information gained from the didactic work. In the final session of each cohort, attendees give presentations to the deputy secretaries of OMHSAS and ODP, discussing key issues, barriers, and solutions to the myriad challenges discussed over the course of the 9-month institute.

Continuing the Work of Collaborative Capacity Building

Looking beyond 2020 and intending to continue the work of building capacity, ODP and OMHSAS have committed to continuing close collaboration and coordination of activities through new initiatives, and in doing so, anticipate reaching an even broader set of stakeholders. Certainly, much has changed since the initiation of the MFP funded Collaborative Capacity Building Initiatives. Though both Offices have long appreciated the impact of trauma in the lives of our stakeholders and the need for trauma-informed practices, events occurring nationally and globally have served to heighten this appreciation. Pennsylvania is uniquely poised to address the challenges posed to long-term care system transformation and is building on the collaborative experiences of the 2016-2020 MFP cycle amidst the development of the Governor’s Trauma Informed Pennsylvania (PA)A Plan.⁸

In order to achieve these goals, components of the collaboration will require a multi-pronged approach to engage and have impact on the necessary participants. New initiatives in this comprehensive approach will include:

TRAIN: Trauma Recovery for Autistic, Intellectually disabled, and
 Neurodiverse individuals

Unfortunately, we know that autistic, intellectually disabled and neurodiverse individuals are at high risk for trauma exposure and victimization. They encounter many barriers if and when treatment is sought. One of the most challenging barriers is lack of providers who feel prepared to support them.

This training curriculum, which is intended for licensed therapists of various disciplines, aims to address this deficit.  A multi-disciplinary team from central region ASERT at the Penn State College of Medicine has developed this curriculum through consultation and input from experts within the c and nationally. The first cohort of licensed therapies participating in TRAIN has been enrolled. The curriculum will be presented in 2 phases:

Pennsylvania START Model – A Pilot

Currently for individuals with I/DA with a cooccurring mental illness who experience crisis, there are gaps in the community mental health system. These individuals often require a high level of specialized skill in assessment and development of treatment approaches. Often, these individuals are at high risk for extended inpatient hospitalizations, incarcerations, and admissions to state facilities. Current models in place through the Dual Diagnosis Treatment Teams and the Assertive Community Treatment models have shown some positive outcomes. However, there continues to be a need to build on these models and PA will pilot the use of the Systemic, Therapeutic, Assessment, Resources and Treatment (START) model in addition to these promising practices. START is a research-based model of services and supports for individuals with an intellectual/developmental disability (IDD) ages six and older who also have a mental health (MH) diagnosis or behavioral health needs.  The START program model was implemented in 1988 by Dr. Joan Beasley and her team to provide community-based crisis intervention for individuals with IDD and behavioral health needs. START is a person-centered, solutions-focused approach that employs positive psychology and other evidence-based practices. Cited as a model program in the 2002 U.S. Surgeon General’s Report on mental health disparities for persons with intellectual/developmental disabilities, START is a comprehensive model of service supports that optimizes independence, treatment, and community living. START is an evidence-informed model that utilizes a national database. START is a national model, adopted in several states. By design, the program builds upon existing resources and services. The PA START pilot project will be initiated under a contract with the University of New Hampshire (UNH) Center for START Service and PA. The UNH team will provide training and technical assistance to the PA START team. Allegheny County is serving as the lead for this 3-year pilot. During the pilot, all counties in PA will benefit from the expertise and information available through START UNH, including the START newsletter. Ultimately, if the pilot is successful, the hope is to expand START services to the entire commonwealth, incorporating what is learned from the pilot and adjusting along the way.

Project Reassure (Resilience and Stress Support Rallies Everyone)

For Pennsylvanians with I/DA and their caregivers, the unprecedented levels of stress due to the pandemic may be particularly high for a population that is at high risk for victimization. Trauma related to the pandemic has been both direct and indirect, including disruption of routine, changes in services and changes in interactions with natural and paid caregivers. Some may have experienced an exacerbation in preexisting or unresolved trauma issues. Fostering resilience for both providers and participants is critical in enhancing adaptive stress responses. At present, there are limited provider supports to address building resiliency. Masters level therapists/supervisors and DSPs have potential for high contact with program participants but may not be prepared to address or even recognize the trauma/stress needs for the individuals that they support or for themselves. Therefore, ODP and OMHSAS have planned in conjunction with a multi-disciplinary team from central region ASERT at the Penn State College of Medicine a two-phase approach to address these critical issues: developing micro-learning resources and creating trauma focused learning collaboratives.

Conclusion

References

Biography

Gregory Cherpes, M.D. is the Medical Director for the Office of Developmental Programs. He is board certified in general psychiatry as well as child and adolescent psychiatry. Dr. Cherpes' clinical, research, and educational efforts have been devoted to addressing the healthcare needs of people with intellectual and developmental disabilities across the lifespan. Prior to joining ODP in 2015, he served as the Director of Behavioral Health and the Director of The Center for Prader-Willi Syndrome of The Children's Institute of Pittsburgh; the medical director for Child, Adolescent and Developmental Disability Services at Allegheny East Mental Health/Mental Retardation (MH/MR) and is the former medical director of two of the state's Health Care Quality Units.

Contact Information

Gregory Cherpes, MD

Office of Developmental Programs

gcherpes@pa.gov