10/27/2014 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Integrated Health and Wellness Approaches to Challenging Behavior in Persons with IDD Joan B. Beasley, Ph.D. Jarrett Barnhill, MD Anne D. Hurley, Ph.D. Beth Marks, RN, Ph.D. University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Public Health Model of Intervention • Primary: Capacity building; promoting wellness, improved quality of life; better outcomes • Secondary: Expertise, access to appropriate care, cross systems communication; crisis prevention; accountability • Tertiary: Expertise, appropriate response, stabilization, intervention; accountability 2 Numbers Benefitting from UniversityIntervention of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Primary Intervention: Improved access to services, treatment planning, integration of health and wellness, and development of service linkages Effective Strategies ‘Changing the odds’ Secondary Intervention: Identification of individual/family stressors, crisis planning/prevention, health and medication monitoring and crisis intervention services Improved Supports ‘Beating the odds’ Tertiary Intervention: Emergency room services, Potential hospitalizations and law Required impact of enforcement intensity of intervention interventions intervention Accurate Response ‘Facing the odds’ 3 1 10/27/2014 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Medical and Genetic Conditions : Key Players for IDD and Mental Health Assessments Anne Desnoyers Hurley, Ph.D. Research Associate Professor University of New Hampshire- Institute on Disability 4 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Initial Psychiatric Diagnostic Interview General Population ID Population Establish relationship Relationship with a Team Conversation, detailed Verbal ability limited questions & answers 3rd party information Evaluate overall presentation Atypical presentation Behavioral phenotypes Discuss diagnosis and “Team” treatment treatment plan negotiation 5 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Chief Complaint N= 100 each Hurley et al. 2003 OPD NIQ Mild M-P • Aggression* 6 45 37 • Mood* 38 9 3 • Anxiety* 24 8 1 • Suicidality* 14 6 0 • Physical* 5 6 18 • SIB * 0 2 9 • Cognitive* 2 5 11 • Psychotic 2 5 12 • Other 9 14 19 6 2 10/27/2014 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED 7 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED How Can We Improve Assessment? • Send for all medical and educational records • Integrating instrumentation into our assessment process • Assessment of adaptive skills and neuropsychological testing and projective testing • Specific tools to assess symptoms or areas, at initiation and regular follow-up • Careful integration of psychosocial stressors and medical conditions 8 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED START Formal Assessments • ABC (Aberrant Behavior Checklist) • RSQ (Recent Stressors Questionnaire) • MEDS (Matson Evaluation of Medication Side Effects) • Obtain all medical and educational records • Case Conference Seminar for select individuals – CET Clinical Education Team 9 3 10/27/2014 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED What do we Mean by Medical? • Any condition that causes pain, illness, or impairments • Chronic illness • Disability – extra burden • Medical problems that are intermittent • ALL OF THE ABOVE CAUSES PSYCHOLOGICAL DIFFICULITES 10 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED What about Genetics • Many people with intellectual disability have that condition because it is genetic in nature • Genetic conditions cause physical characteristics to be different, usually several • Many genetic conditions also are the cause of intellectual disability • Behavioral phenotype is that part of a genetic condition that influences intellectual ability and/or behavior and psychological / psychiatric functioning 11 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Why are Genetics Important? • Because if we are trying to help someone who has a specific known genetic condition, we must find out as much as possible about how it may cause medical problems, what types of medical services the person may need, and we will understand psychiatric difficulties and/or challenging behavior associated with the condition better. 12 4 10/27/2014 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Case #1 Down Syndrome 13 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Oscar 17 yo Down syndrome • Referred due to severe physical aggression q 2-3 months, female staff or community members, incontinent, fecal smearing • 2006 psychiatric eval suggested he was manipulative • Axis I current: mental disorder due to medical problems; r/o autism spectrum disorder, r/o ODD 14 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Oscar 17 yo Down syndrome • ADHD –age 5 • Surgical procedure, complications, psychological reactions? • Hearing impairment • Vision severe nearsighted, legally blind • Psychiatric medications with no evidence of response- adverse events documented previously • Morbid obesity, hyperlipidemia, HTN, sleep apnea, hypothyroidism 15 5 10/27/2014 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Oscar Age 17 Down syndrome • Prevacid- 30 mg, 1x/day • Perphenazine- 2 mg, 2 tabs 2x/day • Levothyroxine- 150 mg 1x/day • Clonidine- 0.1 mg in AM, 0.05 mg in PM, 0.1mg @ HS • Abilify- 5 mg @ HS • Clonazepam- 0.5 mg 1x/day @ HS • Allegra - 90mg (1/2 tab) @ HS • Melatonin 3 mg @ HS 16 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Types of Down Syndrome • 95% of people with Down syndrome have trisomy 21– 3 copies of chromosome #21 • 4% have Robertsonian translocation because part of #21 attached to another chromosome, e.g., #14 • 1% have mosaicism because only some cells have 3 copies of #21: they may have milder features 17 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Epidemiology • >60% spontaneously aborted • 20% stillborn • 1983: 9.5 in 10,000 live births • 2003: 11.8 in 10,000 live births 18 6 10/27/2014 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Down Syndrome Phenotype • Short stature • Broad neck • Small hands • Epicanthal folds on eyes • Upslanting palpebral fissures • Flat nasal bridge • Small mouth • Brachicephaly 19 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Down Syndrome Behavioral Phenotype • Intellectual Disability mild-moderate • Extroverted, highly social • Impulsive, insistent • Ability in reading, math, daily living skills outstrips predictions based on IQ testing • More than 10% have Autism • “Ambitious” 20 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED • Scottish award-winning film & TV actress Paula Sage receives award with Brian Cox-- Wikipedia BAFTA Scotland 21 7 10/27/2014 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Anxiety Disorders “Internalizers” • Panic dx • Agorophobia • OCD • Obsessional slowness 22 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Active/Inattentive-Extroverted “Externalizers” • ADHD • May be linked to problems in expressive-receptive language frustration and perception of being “stubborn” 23 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Common Medical Problems • Hearing impairment ✓ • Hypothyroidism ✓ • Visual limitations ✓ • Osteoarthritis • Fine & gross motor ✓ • Eczema • Congenital heart disease • Seizures ✓ • Obesity ✓ • Depression • Sleep apnea ✓ • • Anxiety disorders Diabetes • Alzheimer’s disease • Early aging • Constipation • Celiac disease • GERD✓ 24 8 10/27/2014 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED normal vision 25 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED severe nearsighted 26 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Changes • Training and understanding of visual and hearing challenges • Referral to visual specialists to consider adaptive equipment, ? Ipad and other devices which may help Oscar understand and communicate better • Focus on serious health problems, some linked to obesity, that might be addressed with more activity and dietary consultation with family and school • Address supports and ways to help him focus and be engaged rather than reinforcements and consequences • Address psychiatric medications re: effectiveness vs. side effects 27 9 10/27/2014 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Resources Guide for Parents of Teens and Young Adults with Down Syndrome Association of West Michigan 616- 956-3488 • 866-665-7451 (toll-free) http://www.kcdsg.org/files/content/Guide%20for%20Teens% 20and%20Adults%20with%20Down%20Syndrome.pdf European Down Syndrome Association Health Care Guidelines for People with Down Syndrome http://www.edsa.eu/files/essentials/edsa_essentials_2_healt hcare.pdf 28 University of New Hampshire Joan B. Beasley, Ph.D. Institute on Disability/UCED Case #2 F-G syndrome Opitz–Kaveggia syndrome 29 University of