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Mental Health Aspects of Individual’s with Intellectual and Developmental Disabilities (IDD/MI) John J. McGonigle, Ph.D. Assistant Professor of Psychiatry University of Pittsburgh, School of Medicine Director, Western Region ASERT Collaborative Center for Autism and Developmental Disorders Western Psychiatric Institute and Clinic of UPMC Overview Past Practices / Current Directions in supporting people with Intellectual Disabilities and co-occurring mental health conditions Incorporating Wellness Recovery and Positive Approaches Philosophies into the plan of support Assessing Psychopathology in Persons with Intellectual and Developmental Disabilities (IDD/Behavioral Equivalents) (DM/ID) Barriers to obtaining an accurate diagnosis Influence of mental health conditions on processing, emotional regulation, impulse control and challenging behavior The role of Functional Behavior Assessments (FBA) in differentiating diagnoses Presenting behavioral health information to the psychiatrist and Interdisciplinary team 2 Dual Diagnosis (IDD/MI) Mental Illness and Intellectual Disability are two different and distinct disabilities Intellectual Disability is characterized by the interaction of a person with limited intellectual ability and adaptive behavior, with his/ her environment Mental Illness refers to the severe disturbances of behavior, mood, thought process and/ or social and interpersonal relationships A person who has a dual diagnosis IDD/MI has two separate conditions, and each diagnosis requires identification and have its own treatment or intervention plan. What do we know about the Impact of psychiatric co-morbidity Increased health care utilizations and costs Increase in staffing patterns and levels of support increase likelihood of contact with police Increase likelihood of multiple placements Increase likelihood of admission to a psychiatric hospital Higher potential for drug interactions due to use of multiple medication Increased likelihood of medical complications changing times Past practices: Culture of control Isolated (Behavioral Homes) Current and Best Practice: Recovery model / culture of care Living with families Protocols (one size fits all) Holistic- Treatment is individualized Control (no voice /choice) Negotiation (WARP plan) Supported Decision Making Family/caregiver involvement Inaccurate diagnosis Old generation medication (sedation) More accurate diagnosis New generation meds (reconciliation) (diagnosis / symptom specific) Chemical restraint Symptom Focused Treatment Behavior modification (reduce) Positive Behavior Supports (increase) Suppression / reduction Teaching alternatives Limited knowledge of etiology Functional Behavior Assessments (FBA) Past Negative Approaches negative consequences /restrictions about control teach the person a lesson coercive doing to teaches what not to do we wouldn’t want done to us may further emotional distress / trauma Present Positive Approaches Therapeutic Empowering (choice/options) Transparency supportive / educational Influencing (choice/options) doing with teaches alternatives we wouldn’t mind if done to us helps in recovery and heals emotional wounds Shared components of Positive Approaches and the Recovery Model • Individualized and Person-Centered: recovery is based on individual’s unique strengths and experiences Empowered Decision Making: Feel valued - Individual’s should have the opportunity to choose from range of options and participate in all decisions Holistic: recovery encompasses an individual’s whole life, including mind, body, spirit, in the context of family and community Non-Linear: recovery is not a clear trajectory; it is a continual growth and learning with occasional setbacks. People need opportunities to develop their ability to restrain their impulses and gain self control Strength-Based: focus is on building on the person’s inherent strengths Shared components of Positive Approaches and the Recovery Model Peer Support: Certified Peer Specialist / Peer Mentors / Peer Supports – Individuals and families that have accessed behavioral health services encourage and engage other individuals in the recovery process or navigating the system Respect and Dignity: protecting individual’s rights and eliminating discrimination and stigma Responsibility: People need choices and may need guidance in developing responsibility for their choices towards their goals Hope: providing motivating message of overcoming barriers and having a better future Individuals with Intellectual and Developmental Disabilities are a highly heterogeneous groups, and there is great clinical variability seen within each person. No two individuals are alike Treatments and support services need to be individualized and specific to each person, family and support systems Treatment is often multi-faceted and requires a cross systems collaboration and a Interdisciplinary team approach Accurate diagnosis and treatment require, expertise, time, patience and team work Why is diagnosis important? • Provides a common understanding of a condition and how it is typically treated • Diagnosis helps tailor the treatment plan and medical management to each of the identified conditions • Assists the person and family with education and recovery • Matches data collection / analysis to the presenting concerns • Necessary for reimbursement Complexity Health/ Medical Mental Health Life Experiences Genetics Trauma Neurological Holistic Approach for Individuals with Dual Diagnoses and Complex Needs Family Thinking / Processing / Learning Residence /Community Environment / Home Emotion/ Mental Health Co-occurring Emotional regulation Developmental Communication Sensory Diet /Nutrition Spirituality Interests / values Assessment of IDD/MI Medical Genetics / Pain Behavior Person / caregiver interactions Vocation / Employment Education / School Bonding / Friendships / Gender/ Relating Bio-Psycho-Social - Holistic and Individual Approach Medical / and Basic Health conditions Family History (including Genetics) Medication Reconciliation – (effects and side effects and drug interactions) Psychological / Neuropsychological Evaluation - Learning style Developmental - Cognitive Profile that includes strengths and weaknesses Mental Health conditions (co-occurring) Neurodiagnostics (if indicated) (EEG/f-MRI/CT) Communication-SP/L Trauma / Abuse – Trauma Assessments Sensory domains - OT Psycho-social Stressors: Problems with primary support group, social environment, housing, work, access to medical care Relationships / Sexuality / Gender Cultural (dietary / religion / celebrations) Environmental / Life space Functional Behavior Assessments and Positive Behaviors Support/ Person Centered / Self Determination / Self Advocacy Areas of concern in the evaluation of person’s with IDD and co-occurring mental health challenges • Importance of Initial and Ongoing Assessments • Variability of the person’s presentation • Understanding what the presenting symptoms and/or Challenging Behaviors (CB) means to the person • Understanding the complex needs of the individual (most cases individual’s Dual Diagnoses are involved in three or more service areas) Medical, MH, ID, Education/OVR, D&A, Justice • Critical need for partnerships to ensure success Variables to consider in the Diagnostic Assessment Challenging Behaviors and Mental Health Symptoms Biological Risk Factors (Behavioral Phenotypes) Developmental Risk Factors Psychological Risk Factors Overlap between psychiatric symptoms and Challenging Behaviors Etiology Expressions of Depression Aggression Physical/verbal Oppositional Agitation yelling/screaming Self Injury self talk Depression in Autism and Asperger’s Syndrome Sterling, L., Dawson, G., Estes, A. & Greenson, J. (2008). Diagnostic areas of concerns with depression overlap with some of the core features of Autism Spectrum Disorder (ASD) Neurovegatative, (peculiar eating / sleeping habits) Affective (flat affect / withdraw / isolative / crying episodes) Changes in verbal and nonverbal communication (perseverate, echolalia, selective mutism) Anxiety (rituals / routines/ Obsession / Compulsions) Clinical Interview should focus on onset / regressions of symptoms and behaviors Clinicians working with Intellectual Disabilities are prone to two types of errors Ghaziuddin (2005) 1. Fail to identify the presence of a mental health problem • Decomposition – addition of other psychiatric symptoms • Isolation - Restrictive Interventions - Hospitalization 2. Risk of making and inaccurate diagnosis •Increase in challenging behaviors •Increase in medication PRN’s and (polypharmacy) Factors that influencing an accurate Psychiatric Diagnosis in persons with Intellectual and Developmental Disabilities Belief that persons with Intellectual Disabilities can not have Mental Illness Having an Intellectual Disability does not cause mental illness The psychiatrist can not secure an accurate diagnosis without relying on the persons self report and input from a variety of sources The psychiatrist / psychologist must formulate the diagnosis alone in one 45 minute office visit “Diagnostic Overshadowing” All problems are related to the Intellectual Disability (Down’s Syndrome, Autism, cognitive Impairment) Clinical issues for IDD across age groups Clinical Issues Lovell & Reiss (1993) Intellectual distortion – person is unable to label and report on his/ her own experience (feelings to words) Psychosocial masking – as a result of improvised social skills, mis-assumption of nervous and illness as psychiatric symptoms (anxiety / paranoia) Cognitive disintegration – a stress induced disruption of information processing that presents as psychotic features (self talk, or imaginary friend, thinking out loud) More common types of psychiatric diagnoses in IDD Depression and Mood Disorders Anxiety Disorders (General, Social Anxiety, Social Phobia, Separation Anxiety D/O and OCD) Intermittent and Impulse Control Disorders Post Traumatic Stress Disorders (PTSD) Adjustment Disorder Schizoaffective and Schizophrenia Spectrum Disorders Stereotypy / Movement Disorders Personality Disorders (Histrionic and Borderline) Diagnostic Principles adapted from Sovner & Hurley (1989) Person’s with developmental disabilities suffer from the full range of mental health conditions Psychiatric target symptoms usually present as challenging behavior The origin of psychopathology (atypical behavior) is multidetermined Acute psychiatric symptoms may present as an exaggeration of a longstanding challenging behavior Diagnostic Principles A target symptom or Challenging Behavior rarely occurs alone or in the absence of other symptoms The severity of the target symptom or challenging behavior is not diagnostically relevant The clinical interview alone is rarely diagnostic It is extremely challenging to diagnose psychotic disorders in persons who are nonverbal and have significant cognitive impairment DSM-5 Diagnostic Symptoms and IDD and Behavioral Equivalents • Looks are deceiving • What you see is not always what you get Types of Symptoms Neurovegetative: Sleep difficulties, changes in appetite, weight loss or gain Affective: Sadness, euphoria, grandiosity, mood swings, decreased interest in pleasurable activities or excess interest. Cognitive/processing: Difficulty in concentrating, planning, distractibility, short term memory and problem solving Perceptual: Distorted thoughts , delusions, hallucinations, racing thoughts Behavior: Aggression, self injury, loss of ADL’s, changes in speech patterns (volume, rate) Mood Disorders in IDD Depression - behavioral equivalents depressed, irritable - decreased smiling; increased whining, short fuse, negative response to requests, everything rubs the person the wrong way decreased interests decreased responses to preferred activity and passions; increased time spent in room or alone (isolation). For some subtle sings could be not carrying around preferred items (magic markers) decreased, increased appetite Fixate on measured weight (125 lbs), meal portions decreased, increased sleep sleep chart Depression continued - behavioral equivalents activity -slowed or agitated (aggression, SIB) Increase in verbal confrontations, pacing, perseveration, verbalizing, rituals that may do physical harm to the person worthlessness, negative self esteem - verbalizations “I’m no good” “retarded” “marshmallow” decreased concentration - Failing grades, school, workshop performance, not completing homework death, suicidal thoughts - focus on people who have died in the past, perseveration on videos with dangerous acts talk about not wanting to live or wish I was never born Mania - behavioral equivalents euphoric, elevated mood or irritable - increased smiling, silly, spontaneous laughing, self injury and self mutilation (tattoos / body piercing) grandiose - inappropriate inflated self esteem / know it all, comparing self to celebrity status (Michael Jackson, Fire Fighter/EMS) decreased sleep - Up all night on Internet (addiction), increased preoccupation in passions - sleep chart pressured, rapid speech - changes in prosody (rate, volume), increased swearing, singing, repeating end of sentences, stuttering Mania continued - behavioral equivalents racing thoughts rapid, disorganized speech and ideas stammering, stuttering, sentences run together, end or words are not clear or repeat distractibility decrease in school performance and work productivity. Decrease in grades pay checks are less agitation increased negativism, aggression, immediate refusal on demand and requests, including medications • hypersexualincreased teasing, sexual behaviors (masturbation), stalking (both male and female), physical intrusiveness, explicit sexual conversations, Internet Porn and Sexting Psychopathology Screening Questions Sovner Is there a significant change in the person’s behavior or mood that occurs in all settings rather than in some settings? Home, day program, school, community Is there little or no improvement in the person’s behavior despite the application of consistent, high quality behavior intervention? Has the person experienced a decreased ability to adapt to the demands of daily living (e.g., decrease in self care and ADL’s)? Has the person had an overall change in affect (the way the person looks)? (Sad, bright eyed) Psychopathology Screening Questions continued Has the person experienced a decrease in involvement with others? Has the person lost interest in previously preferred activities? Has the person had an overall change (increase or decrease) in motivation levels? Has the person shown/ expressed impairments in his/ her perception of reality such as, responding to internal stimuli (voices or false beliefs)? Influence of Mental Health Conditions on Processing Input taking in information Processing comprehending the information Output translating into actions Executive Functioning Deficits Emotional Regulation and Impulse Control Typically diagnosed with Impulse Control Disorder or Intermittent Explosive Disorders •Behavioral Flexibility •Internal level of Arousal •Impulse Control Emotional Regulation and Impulse Control Input Setting Events Directives People Internal Process Output Thoughts Emotion Perception Clear Internal Arousal Increases Behavior Aggression Self Injury noncompliance Decrease threshold for Impulsivity Role of Functional Behavior Assessments (FBA) in Diagnostic Assessments Functional Behavior Assessments (FBA) in Differential Diagnosis Behavior Person Environment Most common Challenging Behaviors studied using FBA Matson (2011) Self Injurious Behavior Aggression Stereotypies Tantrums Destruction of property Inappropriate speech / vocal tics Inappropriate meal time /food refusal /pica Noncompliance Functions commonly reported in the behavioral literature Attention Escape / Avoidance Gaining access to tangibles Sensory / alone / non social Motivations / Etiology for Behavioral Concerns Biological (Genetics – Behavioral Phenotypes) • Physiological (Hunger, Thirst, Pain) • Medical (Dental, Seizures, Apnea, IBS, Hypoglycemia) • Psychiatric / Emotional / Behavioral (internal / psychoses) • Medication (Side Effects) • Developmental Delay • Communication (Expressive / Receptive) • Trauma • Environment (including caregiver interactions) • Cognitive / Executive Functioning Deficits (Processing) • Social Skills Deficits • Attention (gaining access to preferred items) • Escape Avoidance (unpleasant situations / experiences) • • Sensory (Repetitive Behavior patterns including Self Stimulation) Functional Behavior Assessments (FBA) in Differentiating Diagnosis Using FBA in the assessment of the unobservable When in Doubt – Rule it Out Functional Assessment Recording Sheet NAME: __________________________ date / time location when behavior was noticed Who was there at time of behavior? activity antecedent Analyses What happen before behavior? behavior Analyses Describe the behavior consequence Analyses What was done when behavior was noticed Results What happened to the behavior? Tics versus Self Stimulation and Repetitive Behavior patterns Tics • Brief and Intermittent Stereotypies Rhythmic and slower • Face, neck, shoulders, arms and whole body when complex Whole body, head, trunk, hands and fingers • Not purposeful May be purposeful • Waxing and waning More stable over time • Urge and premonitory sensations No premonitory sensation Treatment Principles Step 1: Conduct Functional Behavior Assessment Step 2: Develop Hypothesis about the etiology of the Mental Health Symptoms / Challenging Behavior Step 3: Select a medication or behavioral intervention which is directed to the primary cause of the persons symptoms or challenging behavior Treatment Principles continued Step 4: Specify what will constitute a therapeutic trial of selected drug or adequate response time for a behavior plan to take effect Step5: Start treatment / intervention only after an objective monitoring system is in place Step 6: Decide in advance what will constitute a positive treatment response Example: Habilitative /Treatment/Support Plan Matrix Name: _____________ Target Symptom Challenging Behavior PTSD Flashbacks Self-Injury Cutting wrist Goals Improve coping skills Reduce Flashbacks Keeping self-safe and healthy Reduce self-harm Poor Impulse Control Yelling Screaming Partial Complex Seizure D/O Depression Impulse Control D/O Anxiety D/O PTSD Family / Home Visits Improve coping skills Seizure Control Reduce Depressive Symptoms Begin 2 hour visit on weekends Method Habilitation Treatment Individual Trauma Focused Therapy Positive Behavior Support Plan Positive Behavior Support Plan Anger Management Staff Training Depakote Celexa Klonopin Inderal Prepare preferred activities Have safety plan in place How often and Date of Person providing the service Review or support 2 X weekly Dr. Johnson Outpatient Clinic Direct Support staff 24X7 Residential Program Behavior Specialist BCBA Weekly Home Visits Support staff Residential program Neurologist Monthly Neurology Clinic Dr. Roberts Psychiatrist Monthly visit Clinic Immediate and extended family Residential staff Goal Completed __yes __no Date: ___ Wellness Toolbox Wellness Toolbox – A list of resources used to develop your WRAP. It includes things like: contacting family, friends and supporters (including peer mentors) and community resources. Addresses all life domains including; relaxation and stress reduction techniques, physical exercise, diet, light, spirituality and getting a good night’s sleep. Triggers – External events or circumstances that, if they occur, cause increase stress and anxiety may that can be expressed in an exacerbation in negative symptoms or challenging behavior.. Early Warning Signs – Internal, subtle signs that let you know you are beginning to feel worse. Reviewing Early Warning Signs regularly helps us to become more aware of them and allow us to take action before the person begins to decompensate. When Things are Breaking Down – List subtle signs or behaviors that let you know you that there are emotional and behavioral changes occurring, like feeling sad all the time, staying in your room, yelling or are hearing voices. Using the Wellness Toolbox, can help develop an action plan to help you feel better and prevent an even more difficult time. Crisis Plan – Identify signs that let others know they need to take over responsibility for your care and decision making. Outline a plan for who you want to take over and support you through this time, healthcare, staying home, things others can do to help and things they might choose to do that would not be helpful. This kind of proactive advanced planning keeps you in control even when it seems like things 47 are out of control. Case Presentations Presenting Information to the Interdisciplinary Team Things to consider Organizing your information before meeting with the Interdisciplinary team Know the team members and their roles in supporting the individual and family Understand the importance of defining collecting information on mental health symptoms and challenging behaviors Make sure everyone is speaking the same language Understand the importance of being part of a team and communicating accurate information with the each member Inaccurate information can result in increase in both symptoms and unwanted behavior If you do not understand or disagree be respectful in challenging the team member Psychiatric Story Psychiatric Diagnosis Bipolar Disorder Symptoms / Behaviors Depression Symptoms – looks sad, wanting to be alone, picking scabs / infections Manic Symptoms – rapid speech, Physical Intrusiveness (touching / grabbing others), decrease sleep Anxiety Disorder Worrying about getting ill Panic attacks (trouble breathing) Heart racing Intermittent Explosive Disorder Banging Head Throwing Furniture / Breaking Windows Providing Good Clinical Care includes: Establishing trust between all partners Respect the opinions of all team members Be consistent and predictable Include the consumer and family in developing the plan Secure expertise when necessary (consultants) Communicate / Disseminate latest research and treatment information Treatment is fully intergraded with other disciplines (medicine neurology, sleep, GI) Treatment plans are team based and developed in the Positive Approaches Philosophy Treatment plans are team based and developed in Positive Behavior Supports Be Creative / Think out of the box Team work Questions and Answers References Aman, M. G., Lam, K. S. L., & Collier-Crespin, A. (2003).Prevalence and patterns of use of psychoactive medicines among individuals with autism in the Autism Society of Ohio. Journal of Autism and Developmental Disorders, 33,527–534 American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing. Briere, J., Johnson, K., Bissada, A., Damon, L., Crouch, J., Gil, E., Hanson, R., & Ernst, V. (2001). The Trauma Symptom Checklist for Young Children (TSCYC): Reliability and association with abuse exposure in a multi-site study. Child Abuse & Neglect: The International Journal, 25, 1001-1014. Bonfardin, B., Zimmerman, A., & Gaus, V. (2007). In R.Fletcher, E. Loschen, C. Stavrakaki, & M.First (Eds.), Pervasive Developmental Disorders. Diagnostic Manual – Intellectual Disability: The Text Book of Diagnosis of Mental Disorders in Persons with Intellectual Disability, New York, NADD Publishing. Brereton, A. 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