NASDDDS Three-Part Webinar Series: “State Agencies Roles When Building Effective Supports for People Dually

Diagnosed”

Part 3: The Crucial Role of DSP’s in Supporting People with Complex Dual Diagnosis

April 25, 2019NASDDDSNational Association of State Directors of Developmental

Disabilities Services

We Hope You Joined Us For Parts 1&2

*Part 1: NYSTART program and how state capacity building occurred through collaborative engagement between the state office of

Behavioral Health and the Office for people with Developmental Disabilities.

*Part 2: Delaware describing their Assertive Community Integration Support Team Home Health model, for individuals with Severe and

Persistent Mental Illness (SPMI) and I/DD as well as Maryland’s current efforts to design, develop and implement a program for

people who have I/DD and have experienced trauma in their lifetime.

View the webinars here: http://www.nasddds.org/member-services/webinars-teleconferences.

Our Presenters for Today…..

NASDDDSNational Association of State Directors of Developmental

Disabilities Services

Kristin Ahrens, Deputy SecretaryPennsylvania Department of Human ServicesOffice of Developmental Programs

Dr. Gregory Cherpes, Medical DirectorPennsylvania Department of Human ServicesOffice of Developmental Programs

Beth Barol, Ph.D., LSW, BCBAssociate Dean and DirectorAssociate ProfessorCenter for Social Work EducationWidener University

Everyday Lives – Values in Action

The mission of the Office of Developmental

Programs (ODP) is to support Pennsylvanians with

developmental disabilities to achieve greater

independence, choice, and opportunity in their lives.

The office seeks to continuously improve an effective

system of accessible services and supports that are

flexible, innovative, and person-centered.

Pennsylvania

• Population: 12.81 million

• Number of individuals served by ODP: 56,500

• Providers: 1,000

• Direct Support Professionals: 55,000+

• 1915(c) HCBS Waivers

• Person/Family Directed Support Waiver

• Community Living Waiver

• Consolidated Waiver

• Adult Autism Waiver

• Managed Care

• Adult Community Autism Program

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Changes to Service Definitions

• Residential Services

– Integration of Behavioral Support

• Supporting Wellness (Residential services and In-Home

and Community Services)

“ensuring assistance, support and guidance as needed to enable the

participant to…Manage his or her mental health diagnosis and

emotional wellness including self-management of emotions such as

disappointment, frustration, anxiety, anger, and depression; applying

trauma informed care principles and practices and accessing mental

health services.”

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Service Delivery Changes

• Provider Enrollment

– Residential providers must successfully complete Dual Diagnosis

course

• Provider Qualifications

– Behavioral Specialist – standardized requirements

– DSP Enhanced Level of Service

• NADD certification (Competency Based Clinical Certification,

Competency-Based Dual Diagnosis Certification, Competency-

Based Direct-Support Professional Certification)

• Registered Behavior Technician

• Board Certified Assistant Behavior Analyst

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Service Delivery Changes

• Rate Structure to Support Complex Individuals

– Acuity-based Rates

– Enhanced Rates (available in traditional and self-directed)

• New Regulations Package

– Orientation and Annual Training Requirements

– Restrictive Procedures – plan and staff qualifications

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Health Care Quality Units

• The Health Care Quality Units (HCQUs) work to support

and improve the health information and knowledge for

the I/DD community service system by building capacity

and competency within the physical and behavioral

health care systems as well as the stakeholders of the

I/DD system.

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Health Care Quality Units

• HCQU Face-to-Face Trainings

• HCQU Online Course Catalog

– Available through www.MyODP.org

– The HCQU Catalog displays the online courses offered by all

Pennsylvania HCQUs.

– Participation in HCQU courses is open to any Pennsylvania

resident, regardless of area of residency.

– Online courses are easily accessible to everyone across the state.

Autism Services, Education, Resources and Training

• ASERT

– ASERT is a statewide initiative funded by ODP, PA Department of

Human Services. ASERT is a key component of the strategy for

supporting individuals with autism, their families and professionals

throughout the commonwealth.

– The ASERT Collaborative is a partnership of medical centers,

centers of autism research and services, universities, and other

providers involved in the treatment and care of individuals of all

ages with autism and their families. The ASERT Collaborative has

been designed to bring together resources locally, regionally, and

statewide.

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ASERT

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College of Direct Supports

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Collaborative Capacity Building Initiatives

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Money Follows the Person funded 2016 – 2020• 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.

Mission of the Collaborative Capacity Building Initiatives: • Collaborative project between ODP and Office of Mental Health and Substance

Abuse Services to decrease the need for institutional services

• Build capacity to support complex individuals in the community and increase the capacity to support individuals with Intellectual and Developmental Disabilities and Autism who also have behavioral health challenges

Collaborative Capacity Building Initiatives

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• Capacity Building Institute

• Professional Conference Series

• Dual Diagnosis Conference

• Dual Diagnosis Curriculum

• Mental Health First Aid

Collaborative Capacity Building Initiatives

Capacity Building Institute

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Diverse educational curriculum regarding individuals with

complex needs provided to participants in monthly, two day

sessions over the course of 9 months

• Focus on best and promising practices for individuals with I/DD and

ASD who have significant behavioral health challenges

• Discuss treatment and support approaches from multiple

perspectives

• Collaborate with partners on community inclusion

• Information applied in small group work focusing on individuals with

complex needs

• Relationship building

Capacity Building Institute(1)

Capacity Building Institute

• Primary Faculty

• Guest lecturers

• Extensive small group work

• Culminates in case presentations to the Deputy

Secretaries of ODP and OMHSAS

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Capacity Building Institute – Topics Covered (2)

• Psychiatric assessment

• Psychotropic medications

• Functional Behavioral Assessment

• Autism Spectrum Disorder

• Behavioral phenotypes of genetic syndromes associated

with I/DD

• Biographical timeline

• Trauma

• Eye Movement Desensitization and Reprocessing (EMDR)

• Self-advocate perspectives

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Capacity Building Institute – Topics Covered (3)

• Neuro-feedback, other biofeedback modalities

• Peer support

• Family perspectives

• Community of practice

• Forensic perspectives

• Caregiver support

• Creative/expressive therapies

– Art therapy, Music therapy, Percussion, Equine assisted, Trauma

informed yoga

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Professional Conference Series

• Specialized opportunities for clinicians in practice and in

training, including licensed professionals, behavior

specialists, direct support professionals

• Enhanced exposure to and education about the needs of

individuals with I/DD and mental health diagnoses

• Networking with other professionals & clinicians

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Professional Conference Series – Past Topics

• Advanced Biographical Timeline

• Advanced Functional Behavioral Assessment: Tips

Tricks and Tools to Develop Quality FBAs

• Supporting Health Aging Across the Lifespan

• Improving Outcomes for Persons with Intellectual

Disabilities and Mental Health/Substance Use Issues by

Recognizing Fetal Alcohol Spectrum Disorders and

Modifying Approaches.

• Behavioral Manifestations of Pain and Illness

• Assessment and Effective Intervention for Individuals

with Autism, Intellectual Disabilities and unique

Communication needs: Building services that work.

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Professional Conference Series 2019

• Cultural and Linguistic Competence

• Charting the LifeCourse

• Recognizing and Addressing Mental Health Factors when

Providing Behavior Supports

• Peer Support/Peer Specialist Program

• Healthy Sexual Environments

• Sexual Trauma in People Who Have Committed Crimes

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Dual Diagnosis Conference

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• Promote increased capacity to serve individuals in the

community

• Promote increased capacity to transition individuals from

state settings to the community

• Improve direct service outcomes, support the supporters

• Assist clinicians in expanding expertise with I/DD & MH

clients

• Increase familiarity and networking

• Next conference: August 21st & 22, 2019

Dual Diagnosis Curriculum

• Dual Diagnosis Curriculum currently available on the

MyODP.org website

– MyODP.org > Training > Dual Diagnosis > Dual Diagnosis

Curriculum

• Developed in collaboration with the Health Care Quality

Units

• Designed for Direct Service Professionals and others

who work in the I/DD or MH fields

• Updated

• 40 hours of material in 20 modules

• Course Certificate after completing all modules

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What is Mental Health First Aid ?

Mental Health First Aid is the help offered to a person

experiencing a mental health challenge, mental disorder, or

a mental health crisis. The first aid is given until appropriate

help is received or until the crisis resolves.

Mental Health First Aid does not teach people to

diagnose or to provide treatment

Mental Health First Aid

• 8 hour, in-person training session to teach people how to

identify, understand, and respond to signs and symptoms

of mental illnesses and substance use disorders

• Target audience: Individuals, Families, DSP, Supports

Coordinators, Providers, State Facilities

• Topics covered include anxiety, depression, psychosis,

and addictions

• Attempts to decrease the negative perceptions often

associated with mental health illnesses & substance use

disorders with the specialized complex population

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What Do Challenging Behaviors Tell Us?

AGGRESSION SIB crying CURSING“NONCOMPLIANCE” sexual acting out Suicide attempts

medication refusal SMEARING FECES screaming

“MANIPULATION” eloping RECTAL DIGGING

spitting ARGUING biting compulsive behavior

What Do We Mean By Trauma?

• Being subjected to an experience you did not ask for, cannot stop, or escape from

• Being subjected to an unusual (outside of the ordinary) experience (not uncommon)

• Being subjected to a real or perceptual life threatening experience

• The subjective experience that involves intense fear, helplessness, and horror

Conditions That Affect The Impact Of Trauma

• Being separated from family

• Being moved from home

• Disturbance of typical neurological pathways

• Experiences of loss and unresolved grief

• Being seen as “different”

• Illness and pain

• Change

• Loneliness and grief

Factors Influencing the Victims’ Response (John O’Brien’s model)

Strength of Internal Supports

Strength of External Supports

Strong

Weak

Weak

Strong

PTSD

Traumatic Incident

Resilience

Enemy Images

The Danger of the Gladiator/Martyr Mentality

• Burnout

• Disempowerment of others

• Tying one’s sense of self to the progress of the person

being ”supported”

• Not ‘building the bench’

• Not reaching out for supports

• Not holding the community responsible for its share

• Not sustainable

• Multiple losses

The Danger of the gladaEnemiestor/martyr mentality (2)

“If we could read the secret history of our enemies, we

should find in each man's life sorrow and suffering enough

to disarm all hostility”

Henry Wadsworth Longfellow

The Biographical Timeline Process

Turn Around in the Direct Supporter’s Frame of Reference

• Desire to work with the person

• Ideas of how they can help on an interpersonal basis

using a well orchestrated daily life as a healing modality

• Understanding how a trauma perspective applies to this

person

• Capacity increases to approach the person with

compassion, respect, acceptance, patience, tolerance,

understanding, caring, honesty encouragement and

warmth

• Advocacy

• Hanging in there

Helping People Who Are Struggling

• Offer concrete ideas about what to do

• Help people remember that it has happen before and that they will get out of it

• Be sympathetic to the pain people go through and understand that it is not them, it’s an illness

• Stay close to people

• Just listen

Direct Care: Potentially Social Therapists

The profession that involves expertise in:

• A healing and Holistic Environment

• Communication

• Person Centered Planning … and action

• Hanging in There … through thick and thin

• Balancing Power

• Advocacy

Social Therapists: Building the Capacity of Direct Supporters

• Providing Safety

• Creating meaningful daily life

• Working with a “game plan”

• Valuing daily routines that the person enjoys

• Maximizing Self-Esteem

• Building real capacities

Implications for Training

What We Get

• A Power-Over Orientation

– Policies and Procedures

– Emphasis on Compliance

– Data and “outcomes”

orientation

– Focus on restrictive

procedures

– Fixing Problems Orientation

– Risk Prevention

What We Need

• A Power-With Orientation

− Understanding the “Big

Picture” of a person in his or

her society

− Understanding the supports a

person needs to Live an

Everyday Life

− Risk Prevention through

Creative thinking

− Emphasis on choice

Implications for Training (2)

What We Get

• Focus on Here and Now

behavior absent context

• Fixed environments and how

to make people

accommodate to them

• The introject that other

professionals are the

“thinkers” and the direct

supporters are the “Doers”,

feeling incompetent as team

members

What We Need

• Focus on understanding a

person in the context of that

person’s biography & current life

• Establishing environments and

supports that minimize stress,

discomfort and provocation

• Understanding human dynamics

and therapeutic supports –

feeling competent and confident

as team members

Supporting The Supporter Through Leadership

• Set up a template or hologram of relationships throughout the organization beginning with how management relates to direct care staff.

• Honor each direct care staff person as a full team member.

• Sharing Power – each team member equipped to excel in valued roles.

Managerial Supports for the Supporters

• All levels of management should have a base line of

knowledge of “best” or “promising practices” in the field –

to know good supports from misdirected or inadequate

ones.

• All levels of management should be clear that their

responsibility is to expedite, teach, model and clear

obstacles that interfere with direct care’s capacity to

support those entrusted to their care.

Managerial Supports for the Supporters

• Do not allow supporters to burn out. Step in personally if

people are being pushed to the edge.

• Consistently let people know that you know of the work

they are doing and value it.

• Give frequent constructive and supportive feedback.

Again – remember that this is a hologram being establish

throughout the environment.

Social Therapist

“At the hands of a social therapist, every moment of a

person’s life becomes rich with meaning. Trust is built,

and root causes to challenging behaviors get figured out.

Sometimes it takes years to help a person to fully recover;

yet few people do fully recover without the support of

committed people in their lives.”

(Barol & Focht-New, in press)

Resources and References

• Thought as a System by David Bohm

• Leadership Practices Inventory by James M. Kouzes and

Barry Z. Posner

NASDDDSNational Association of State Directors of Developmental

Disabilities Services