Positive Approaches Journal, Volume 10, Issue 3

Volume 10 ► Issue 3 ► November 2021

Beyond Silos:
Highlighting Multisystem Approaches in Pennsylvania

Volume 10 ► Issue 3 ► November 2021

Data Discoveries

The goal of Data Discoveries is to present useful data using new methods and platforms that can be customized.

State initiatives to bolster the preparedness of state entities to train and deliver information and resources to staff are critical to building and maintaining optimal systems of care. In Pennsylvania, the Capacity Building Institute (CBI) offers professionals from many systems in Pennsylvania supporting individuals on the autism spectrum, those with intellectual and other disabilities, and individuals with mental health diagnoses the chance to connect with other professionals, forming networks and teams to address complex issues. Since the first cohort of CBI participants enrolled in 2016, cross-systems opportunities for professionals to engage and expand knowledge on promising practices, problem-solving strategies, resource sharing, and supporting individuals with complex needs have emerged and grown. CBI participants attend a two-day per month intensive educational seminar over the course of nine months focused on a myriad of topics including trauma, behavioral assessment, self-care, sexuality, and therapeutic modalities. CBI is one initiative funded by the Money Follows the Person (MFP) demonstration project and has led to collaboration between the Office of Developmental Programs (ODP) and the Office of Mental Health and Substance Abuse Services (OMHSAS).

To learn more about the impact of CBI on attendees and how CBI has impacted their ability to perform their jobs more successfully as well as satisfaction with CBI overall, a survey was distributed to previous participants from the first four cohorts of CBI. Over 100 CBI participants completed the survey, representing more than half of those who participated. Survey respondents represented a diverse cross section of Pennsylvania service systems and representation across roles and job functions. The data dashboard below shows results from the survey.

Conclusion

Volume 10 ► Issue 3 ► November 2021

Going Home: Children with Medical Complexities Cross System Successes

Heidi Arva & Jennifer Harniman-Crangle, LSW

Abstract

Early in the summer of 2018, interest around a new initiative emerged within the Office of Developmental Programs (ODP). The intent of the initiative was to support children with medical complexities residing in pediatric facilities by exploring our current system, learning more about existing services, and collaborating with other systems within the Department of Human Services (DHS) to support children to be able to return home to their families rather than grow up living in facilities. As the work began it became apparent that this initiative would require the support and involvement of multiple systems to achieve success.

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

Volume 10 ► Issue 3 ► November 2021

Pennsylvania System of Care: Improving Services and Supports for
Youth and Families with Behavioral Health Challenge

Mark B. Durgin

Introduction

The challenge—and opportunity—comes in de-siloing systems that don't typically work together, such as mental health and juvenile justice (court system). When youth and family-serving systems are integrated effectively, mechanisms are established to manage and coordinate care in a person-centered approach that meets the needs of youth and family's social, emotional, and physical health. In addition, this integration taps into the natural and community support available to youth and families.

A SOC, however, expands the role of youth and families as decision-makers at the individual, county, and state levels to ensure they receive the most beneficial, culturally, and linguistically competent services and supports. This is achieved by having youth and family as part of county and state leadership teams, employed as peers, as part of behavioral health treatment and planning processes. As a result, systems work more effectively, allowing communities to respond and adapt to challenges nimbly to improve outcomes for youth and families. Information related to outcomes is detailed below.

The PA Care Partnership has worked with the following counties: Blair, Carbon, Chester, Crawford, Delaware, Erie, Fayette, Greene, Lackawanna, Lawrence, Lehigh, Luzerne, Monroe, Montgomery, Northumberland, Philadelphia, Pike, Venango, and York.

Counties working with the PA Care Partnership Grant:

Core Values

An effective SOC relies on the adoption of a core set of values that easily adapts to the realities of any community, including the kinds of challenges that come with stretched resources and decreased budgets. In adopting these core values, systems work more efficiently and save community resources by preventing or reducing entry into higher levels of care or out-of-home placement. Moreover, youth and families have an equitable role in making decisions about their own care leading to better outcomes.

The PA Care Partnership has developed eleven (11) Core Values, which are the foundation of a system of care. Additionally, the values have been vetted and approved by the Technical Assistance Network, part of the University of Maryland School of Social Work, the national technical assistance provider for SOC grants. These values transition the SOC toward a public health framework by focusing on treatment for individual children with serious behavioral health conditions and addressing promotion, prevention, early intervention, and education to improve total health—physical, oral, developmental, and behavioral health.

The System of Care values guides and direct how to implement the philosophy throughout the Commonwealth of Pennsylvania.

The Pa Care Partnership provides or sponsors a variety of training to the counties currently involved with the grant as well as to systems, providers, community agencies, youth, and families across the commonwealth. These trainings focus on the values of SOC to address multisystem integration, trauma-informed, cultural and linguistic competence, and being youth and family driven.

Trainings and Technical Assistance including:

Evaluation is a significant component for the grant implementation to report outcomes to SAMHSA and help counties and the commonwealth fully understand the impact of the supports and services. There is discretion on the types of services and supports which can be implemented. However, the services selected must have multiple encounters over time and be youth and family driven.

For the PA Care Partnership grant, counties have used the following:

Through our evaluation data, we have enrolled 293 youth in the longitudinal evaluation.  94% of youth enrolled have two or more services involved, and 92% have mental health services involved at intake.

Data collected as part of the grant provided the following information:

In closing, Pennsylvania has had a long history of implementing SOC philosophies across the commonwealth. While counties and the commonwealth may vary in implementing a SOC, foundationally, they all have the same core values of being youth and family-driven, culturally and linguistic competent, and trauma-informed.  In Pennsylvania, we must support the role of youth and families as decision-makers at the individual, county, and state levels to ensure they receive the most beneficial and culturally and linguistically competent services and supports. Through a SOC philosophy, systems, providers, community partners, youth, and families build and promote equality and trust. Children and young adults receive the services and support based on the individual community's strengths and culture.

Other Resources

PA Care Partnership

Philadelphia System of Care,

Behavioral Health Alliance of Rural PA,

Luzerne-Wyoming System of Care

Trauma Workshops Through Lakeside Global Inc.

Coach Approach to Adaptive Leadership

Family Roadmap Training

System of Care: A Comprehensive Toolkit for County Implementation

System of Care Values

Youth Engagement

Family Engagement

High Fidelity Wraparound

 

References

Biography:

Mark B. Durgin joined OMHSAS as a contractor in 2016 as the Director of Pennsylvania Care Partnership. Mark holds a B.S. in Criminal Justice from York College of Pennsylvania, focusing on parole and probation. In addition, Mark has over 20 years of professional experience in Pennsylvania's child-serving systems, working with youth and families at a county and state level.

Contact Information

Mark Durgin

c-mdurgin@pa.gov

Volume 10 ► Issue 3 ► November 2021

Serving Children and Youth with Complex Behavioral Support Needs

“No provider will serve him.”

Nancy Thaler

Abstract

When we hear the words, “no provider will serve him,” we know that we have a crisis; our service system is failing a person whose needs are very great. From my experience over five decades as a direct support worker, a houseparent, a provider agency administrator, and a state director, I can say that this is not new. We have struggled, since the earliest years of providing community services in the 1970s, to meet the needs of people whose behavior is problematic and can be dangerous. This article is based on information about 50 children and young adults who were in crisis and referred to the Pennsylvania Department of Humans Services in 2021. The interpretation of their challenges and needs and the description of the strategies that may address their needs is based on a synthesis of my experience in the field of developmental disabilities and developments in the field of trauma and behavioral health over several decades.

Introduction

“People with complex behaviors” is the language we use today to describe “people who are difficult to serve,” or “people with challenging behavior,” or “people who are dually diagnosed.” Regardless of the label, the challenge is the same. These individuals present behavior that is dangerous to themselves or others around them, behavior they cannot control, behavior that can be strange and frightening.

Over the decades, we have acquired new knowledge and additional resources. We know more about diagnoses such as Autism Spectrum Disorder (ASD) and bipolar disorder; we have new medications that are more targeted to a diagnosis than Thorazine and Haldol were. We know about trauma and the profound impact it has on a person’s ability to function; and we have new therapies.

We are doing better. There are many children and adults who have challenged and pushed us to our most creative limits. There are many providers who have expanded their knowledge base, have individualized services, and have learned to serve people with creativity and commitment.

But we need to do more. As a system we need to reach everyone.

Who are the children and youths with complex behaviors? What do we know about them? What makes their behavioral support needs complex?

Since the Department of Human Services’ publication of the Bulletin on Complex Case Planning for Children and Youth Under Age 21, issued August 2021, more than 50 individuals, from many counties across the commonwealth, have been referred to the Department of Human Services (DHS) with a request for assistance. The department receives a referral form and sometimes additional information such as social histories and evaluations. An analysis of the information about the first 50+ children and young adults tells us something about who they are and what their needs are. This group of young people is not a random sample; they are simply the first referrals sent to the department after the Bulletin’s implementation. But because there are similarities in their histories and needs, we can glean information to inform our efforts to improve services to children and youths with similar needs. The most significant information we can glean from a review of available records follows:

When we are successful in meeting the needs of these individuals, what has worked?

Formal and informal interviews with DHS regional staff, county staff, and case managers have provided some insights. Counties, managed care organizations, and providers in many areas of the state are working together and “thinking outside the box.” Success is more likely when cross-systems teams work together to understand the needs of these children and youths and develop solutions.

Digging Deeper - Trauma in Children and Youths with Multiple Disabilities

Trauma is a major factor in the lives of many of these children and youths – and maybe more than we know - who have been referred to the department. Their trauma generally began in early childhood and has persisted. It has often gone unrecognized as the cause of their problematic behavior. Despite descriptions of extensive trauma in their records, that trauma has – incredibly - often not been identified as a diagnosis at all, nor has it been factored into their treatment plan.

Trauma that occurs in childhood is known as “developmental trauma” or “complex trauma” or “neurodevelopmental trauma.” Developmental trauma differs considerably from post-traumatic stress disorder (PTSD). An adult who experiences trauma and then PTSD has, presumably, a “normal” childhood to fall back on, so to speak - a history of stability. But when the trauma happens during a child’s development, it severely undermines “the capacity of the child to form close and secure adult and peer relationships; experience, manage, and express a full range of emotions; and explore the environment and learn…”¹ We often see the diagnosis “dysregulation” somewhere in the person’s chart. This refers to an inability to manage thoughts and emotions and therefore to difficulty in controlling impulses and behaviors: the early trauma has made learning to “manage” or “control” simply impossible.

In other words, how a child or teenager or young adult behaves, learns, and relates to people is rooted in their early childhood experiences. A child raised in the security of a loving environment will develop healthy relationships, will trust adults, and will learn from their environment. But a child who experiences serious neglect and abuse – trauma - will develop survival behaviors that may be functional in the environment where the trauma has occurred, but which are dysfunctional in other environments. Fight, flight, or freeze are the words used to describe a person’s response to trauma. Behaviors such as running away, hitting, or lying can be functional as survival strategies but do not work in non-traumatic environments.

Trauma can cause developmental disabilities. All forms of trauma affect brain development. Trauma to the head itself, which may be diagnosed as a concussion or traumatic brain injury, can damage the brain, so that the full range of cognitive functions and adaptive skills are compromised. Childhood trauma is often linked to developmental delay across a several domains including cognitive functioning, as well as language and motor development.²

Children born with a developmental disability are more likely to be victims of trauma and are affected even more profoundly by that trauma. “Maltreatment of children with disabilities is 1.5-to-10 times higher than of children without disabilities.”³ And the difficulty they have in understanding, problem solving, and communicating can intensify the experience and the impact of the trauma.

The behavior in traumatized children, teenagers and young adults with developmental disabilities is often not recognized as trauma-related but is instead interpreted as “negative behavior” that stems from their disability and which needs to be controlled and modified. But we must understand that instead of the typical behaviors we see from youth without developmental disabilities who are traumatized - i.e., elopement, drug use, stealing and self-cutting, etc. – traumatized individuals with developmental disabilities are more likely to engage in face slapping, head banging, feces smearing, and self-stimulating behaviors. Once we understand this, we are more able to identify the presence of trauma and develop appropriate supports and interventions. Self-abusive behaviors are not always the result of trauma. Particularly in neurodiverse children with ASD, the behavior may be a response to stress or anxiety or to communicate when the child does not have verbal communication. It is important to conduct a full functional assessment as well as a social history to determine the reason for the behavior.

Treatment modalities utilized for adults with PTSD are often not effective with individuals with developmental disabilities. Cognitive Behavioral Therapy (CBT), an intervention frequently used for adults, requires a level of interaction that persons with developmental disabilities can find difficult or impossible. But Eye Movement Desensitization and Reprocessing (EMDR), an evidence-based therapy that does not require cognition-based interaction, can be effective. Other models of therapy widely used to treat Developmental Trauma include play therapy, art therapy, therapies using animals, occupational therapy, neurofeedback, various approaches of developmental psychotherapy, and group activities ranging from peer discussion groups to sports or singing.

Fetal Alcohol Syndrome (FAS) and lead poisoning

Both Fetal Alcohol Syndrome (FAS) and lead poisoning are conditions that affect brain development and can result in poor reasoning and judgement, difficulty with attention, impaired memory, irritability, deficits in adaptive behavior, or problems with socialization or self-regulation. A child may have these conditions without having a developmental disability diagnosis...and yet the challenges are the same. Recognizing the presence of either of these conditions is important to securing the right physical health services and behavioral health supports.

Volume 10 ► Issue 3► November 2021

Peer Support: Innovative Models Across Systems and Populations

Mi-Yeet Wong

Abstract

Peer support utilizes the transformative power of lived experience to make an impact in people’s lives. This article provides brief background information on peer support services, emerging peer support models, and the future of peer support.

___

Introduction

A self-advocate once poignantly said during a conference session, that effective systems change happens when people who have the most to lose, are also the ones making the decisions. While the aim of that talk may have been focused on how effective systems change for racial equity should proceed, he was also conveying that lived experiences and stories are not only important, but powerful in creating change. The model of peer support services, which is based upon the value of lived experiences, and the philosophy for supporting individuals through shared understanding, are critical for systems change. In this article, background information on peer support services, emerging peer support models, and the future of peer support will be discussed.

Background of Peer Support

Peer support workers are “people who have been successful in the recovery process who help others experiencing similar situations. Through shared understanding, respect, and mutual empowerment, peer support workers help people become and stay engaged in the recovery process and reduce the likelihood of relapse.”¹ Peer support workers engage in a myriad of activities in supporting others, including advocacy, sharing resources, building skills, fostering community and relationships, leading recovery groups, and mentorship and goal setting.¹ There are foundational principles that guide the practice of peer support, including the philosophy that practice should be recovery-oriented, person-centered, voluntary, relationship-focused, and trauma-informed.¹ These principles carry themselves across systems as well. For example, some of the very same values of the Everyday Lives Values in Action mirror these principles – person-centered decision making; the promotion of health, wellness, and safety; being able to trust the people that support you to honor and respect your right to make your own informed decisions.²

The history of peer support can be found in writings from the late 18^th century when hospitals were hiring former patients to work in a psychiatric hospital as they were “…usually more gentle, honest and humane.”³ Since then, peer support has expanded to serve diverse populations, within a variety of treatment settings, and is recognized as an evidence-based practice that is Medicaid reimbursable.⁴ While peer support has its history in the mental health field, it has rapidly crossed systems, populations, and disciplines. In Pennsylvania, peer support has been used as a model to serve family systems, the criminal justice system, older adults, and individuals with developmental differences.

Family System

Family Peer Support Specialists use their lived experience as caregivers of children, youth or young adults experiencing emotional, behavioral, or co-occurring challenges.⁵ They support other parents or family members through activities such as empathetic listening and emotional support, navigating systems, providing information about systems or community resources, providing advocacy and support, and encouraging self-care activities, to name a few.⁵ When we talk about cross-systems successes, the importance of having Family Peer Support Specialists cannot be emphasized enough. Not only are Family Peer Support Specialists navigating family systems and dynamics, but they are also navigating community systems and resources. Family Peer Support Specialists are integral to service provision because they serve as a model for what successful collaboration can look like between systems and families, they can ease the demand placed on systems, and above all else, serve as a support for which families can turn to so that they know they are not the only ones navigating the challenges and that they too, can learn skills to care for themselves, advocate for their family members and even change the very systems that are not serving them.

Criminal Justice System

Peer Specialists can also be found within the justice system context. Forensic Peer Specialists are individuals with a history of mental health diagnosis and/or incarceration, who provide individualized support to others with psychiatric disabilities and criminal justice involvements.⁶ Forensic Peer Specialists create change by supporting people throughout their involvement in the criminal justice system, promote recovery principles including self-advocacy, advocate for their recipients, educate people about Mental Health Recovery and inspire hope by sharing their life experiences.⁶ Forensic Peer Specialists work in various settings including crisis intervention teams, state hospitals, emergency rooms, jails/prisons, community settings, and many other places that their recipients are. ⁶ They support individuals in understanding and navigating the criminal justice system, obtaining employment and housing, completing parole/probation requirements, reducing the time individuals stay in jail due to lack of community supports or basic needs, and identifying positive supports.⁷ As an example, the PA Statewide Forensic Peer Support Specialist Program is a project funded by the Pennsylvania Commission on Crime and Delinquency (PCCD) in cooperation with the Office of Mental Health and Substance Abuse Services (OMHSAS).⁸ Their collaborative efforts have included several entities, including Drexel University, and have thus far completed three 3-day forensic trainings for current peer specialists and a train-the-trainer workshop.⁸

Older Adults

Peer specialists also work with older adults with behavioral health issues on activities such as crisis support, development of community roles and natural supports, individual advocacy, self-help and self-improvement.⁹ The Certified Older Adult Peer Specialist (COAPS) Program is a partnership between the Center for Mental Health Policy at the University of Pennsylvania, the Office of Mental Health and Substance Abuse (OMHSAS) and the Pennsylvania Department of Aging (PDA).⁹ COAPS work with older adults in various settings including senior centers, senior housing units, and health clinics.⁹ COAPS teaches Certified Peer Specialists to support older adults on a variety of issues including physical and mental health, normal aging, cultural competence, anxiety, depression, trauma, substance use, stages of change and more.⁹

Developmental Differences

Peer support is a fundamental service of Centers for Independent Living, which are federally funded programs across the United States that offer community living supports for all individuals with disabilities.¹⁰ Additionally, with the peer support model being embedded across multiple systems and serving a variety of populations, it has also made its way to an innovative program called the Community Autism Peer Specialist (CAPS) Program which serves individuals on the Autism Spectrum.¹¹ CAPS provides 75-hours of training (aligning with the Certified Peer Specialist model in the mental health system) which provides a foundation for the individual to become a peer support professional who also has the personal lived experience as individuals on the Spectrum. CAPS is the culmination of a partnership between many stakeholders and entities, including self-advocates, caregivers, peer specialists, provider, state, local, and university partners. CAPS works with participants on goals that the participant identifies as important to them, which may include community, employment, education, or advocacy goals. Beyond these goals though, is the impact of having someone with lived experience who works with a participant to build a mutual relationship, which can alleviate isolation and promote connection, communication, and goal development.

The Future

While the programs highlighted are only a few of the many models to support a variety of populations, they are nonetheless exciting to consider when we think about the transformative impact that peer support has had on people and systems. As we look to the future, these peer support models continue to meet a much-needed gap in service for individuals, employment opportunities that emphasize lived experience, and an asset to alleviate the workforce shortage crises in human services. With people reassessing what it is they want out of their employment, and with a poor unemployment rate among the disability population,¹² peer support can create employment opportunities for people with lived experience while alleviating the demand placed upon systems. Some of these programs will work towards certification, others will work towards program expansion, and still others will work towards developing the capacity to measure outcomes and the impact of peer support. There is no doubt that as the importance of lived experience becomes increasingly salient, the evolution of peer support will continue to expand in dynamic ways across systems and environments.

References

1.      Peers. SAMHSA Substance Abuse and Mental Health Services Administration website. https://www.samhsa.gov/brss-tacs/recovery-support-tools/peers. Last Updated: 09/29/2021. Accessed October 15, 2021

2.      Pennsylvania Department of Human Services, Office of Developmental Programs. Everyday Lives: Values in Action. 2021. https://www.dhs.pa.gov/Services/Disabilities-Aging/Documents/Everyday%20Lives/Everyday%20Lives%CB%90%20Values%20In%20Action%20(c_241391).pdf. Accessed October 15, 2021.

3.      Davidson L, Bellamy C, Guy K, Miller R. Peer support among persons with severe mental illnesses: a review of evidence and experience. World Psychiatry. 2012;11(2):123-128. doi:10.1016/j.wpsyc.2012.05.009.

4.      Philadelphia Dept. of Behavioral Health and Intellectual Disabilities Services and Achara Consulting Inc. Peer Support Toolkit. http://dbhids.org/wp-content/uploads/1970/01/PCCI_Peer-Support-Toolkit.pdf. 2017. Accessed October 15, 2021.

5.      PA Care Partnership County Collaborative monthly call. Family Peer Support Specialist a Pennsylvania Overview. https://www.pacarepartnership.org/uploads/County_Collaborative_Family_Peer_PowerPoint_11-27-18.pdf. Published November 27, 2018. Accessed October 15, 2021.

6.      Baron R. Forensic Peer Specialists: An Emerging Workforce. Policy Brief June 11 Forensic Peers. http://www.pacenterofexcellence.pitt.edu/documents/Policy_Brief_Jun_2011%20Forensic%20Peers.pdf. Published June 2011. Accessed October 15, 2021.

7.      Forensic Peer Support Project. Pennsylvania Mental Health Consumers' Association. https://www.pmhca.org/Forensic-Peer-Support Accessed October 15, 2021.

8.      Statewide Forensic Peer Support Specialist Program. PMHCA. Pennsylvania Mental Health & Justice Center of Excellence. Drexel University. http://www.pacenterofexcellence.pitt.edu/documents/About%20FPS%20--%205_09_11.pdf. Accessed October 15, 2021.

9.     COAPS Certified Older Adult Peer Specialists. http://olderadultpeerspecialists.org/why-coaps. Accessed October 15, 2021.

10.  Salzer MS, Rogers J, Salandra N, et al. Effectiveness of peer-delivered Center for Independent Living supports for individuals with psychiatric disabilities: A randomized, controlled trial. Psychiatr Rehabil J. 2016;39(3):239-247. doi:10.1037/prj0000220.

11.  Community Autism Peer Specialist (CAPS) Program. Philadelphia Autism Project. https://www.phillyautismproject.org/peer/. Accessed October 15, 2021.

12.  Persons with a Disability: Labor Force Characteristics - 2020. News Release. Bureau of Labor Statistics. U. S. Department of Labor. https://www.bls.gov/news.release/pdf/disabl.pdf. Published February 24, 2021. Accessed October 15, 2021.

Mi Yeet Wong,

Policy and Analytics Center (PAC), A.J. Drexel Autism Institute, Drexel University

3020 Market Street, Suite 560, Philadelphia, PA 19104

Phone Number: 215-571-3209