Adults w/IDD: Confronting Challenges 04/13/2018 Across the Health Care Continuum DISCLOSURES • Both speakers receive payment for Adults With Intellectual & employment. Developmental Disabilities: Confronting Challenges Across The Health Care Continuum • Both speakers are eligible for session reimbursement/ honorarium. Jeanne O’Neil McCoy, PT, DPT, MS, NCS Marianjoy Rehabilitation Hospital, part of Northwestern Medicine, Wheaton, IL Marilyn Holt, PT, MHS, GCS, CEEAA LTC Support, Galesburg, IL 2018 CONFERENCE & EXPO Friday, April 13, 2018 Objectives (ipta.org) (Pediatricapta.org) (clearreview.com) (acutept.org) (https://herdfoundationnagpur.wordpress.com/2015 /01/12/international-thank-you-day-january-11/) Property of J McCoy/M Holt; not to be copied w/o permission 1 Adults w/IDD: Confronting Challenges 04/13/2018 Across the Health Care Continuum Objectives (1 of 4) Objectives (2 of 4) • Discuss concepts related to normal & • Promote early abnormal aging, mobilization, & consider reasons for select & implement hospitalization, & safe patient handling employ strategies to for adults w/IDD. prevent or minimize complications for adults w/IDD. (https://mobile.va.gov/app/safe- patient-handling) Objectives (3 of 4) Objectives (4 of 4) • Foster continuity of care utilizing effective communication & care coordination that allows for the • Identify resources to development of a plan of care enhance the health specific to the unique needs of care experience of each patient across the continuum persons with of care, encompassing needed services & assuring that the developmental patient receives the optimal care in disabilities & their the right place & at the right time families/caregivers. to facilitate return to prior activity & (pinterest.com) participation levels, thus reducing (https://www.eiseverywhere.com morbidity, rehospitalization, & /file_uploads/) health care costs. Developmental Disability (DD) DD Examples "Developmental disabilities are a • ADHD group of conditions due to an • Autism Spectrum Disorder impairment in physical, learning, • Cerebral Palsy language, or behavior areas. These • Hearing Loss conditions begin during the developmental period, may impact • Intellectual Disability day-to-day functioning, & usually last • Learning Disability throughout a person’s lifetime." • Vision Impairment (ahcancal.org) (https://www.cdc.gov/ncbddd/developmental • Other Developmental disabilities/facts.html) Delays (Supportourribbons.com) (cdc.gov) Property of J McCoy/M Holt; not to be copied w/o permission 2 Adults w/IDD: Confronting Challenges 04/13/2018 Across the Health Care Continuum Intellectual Disability (ID) Health Disparities for People w/IDD (Iacono et al, 2014) (Moran et al, 2013, Perkins et al, 2010) • Lack of access to high quality • Failure to include adults w/ • Onset before age 18 medical care IDD in public health & prevention activities • Lifelong limitations in IQ • Inadequate preparation of (<=70) & adaptive health care providers • Higher rates of morbidity & functioning mortality • Social determinants of health: • 1-3% of world's population age, gender, poverty • Unrecognized or poorly managed health conditions (Brittanymteacherresource.blogspot) Normal Aging Changes Theories of Aging (No One Universal Theory!) (pinterest.com) Stochastic Non-Stochastic Psychological Aging caused by external forces Aging internally regulated by a Attempt to explain behavior, roles, & acting on body cells; no way to slow biological time clock; nothing can relationships in the aging process the process change it Free Radical Theory Programmed Aging Theory Disengagement Theory Cells are damaged by free radicals A biological clock controls behavior Older adults & society mutually withdraw which leads to aging & life span from each other; aging person becomes more introspective & self-focused. Somatic Mutation Theory Pacemaker Theory Activity Theory Chromosomes damaged by Neurochromosomes (brain) Continuing the social activities of middle exposure to toxins or radiation regulated development throughout age or those activities must be replaced the lifespan w/others for successful aging Wear & Tear Theory Immunological Theory Continuity Theory (bing.com) Damage from everyday wear Immune system changes Personality & behavior develop over a eventually exceed the body’s ability responsible for aging effects lifetime & are key to how a person to repair itself adjusts to aging Age-Related Changes (hopkinsmedicine.org) • Vision • Brain • Hearing • Heart • Taste • Kidneys • Touch & Smell • Lungs • Arteries • Metabolism • Bladder • Muscles • Body Fat • Skin • Bones • Sexual Health (http://agingcarefl.org/what-is-normal-aging/) Property of J McCoy/M Holt; not to be copied w/o permission 3 Adults w/IDD: Confronting Challenges 04/13/2018 Across the Health Care Continuum Obesity & CVD (McLeod et al, 2016) (Long & Kavarian, 2008) (i1.wp.com) • Obesity: 36.4% w/ID vs. 20.6 w/o ID • 60-70% obesity rates adults w/ID or DS • 2.5-4x greater obesity rates than general population • > HTN, diabetes, CVD, stroke, & stress • Lack of physical activity, poor diets, environmental factors >obesity • CVD leading cause of death in ID (except Down Syndrome) (https://www.resourcesforintegratedcare. Aging with a com/idd/gcc/webinars/aging_idd/webinar1) Developmental Disability • Common to live to 50's, 60's, 70's • "Accelerated Aging" • Sensory Loss (eyes & ears) • Hypothyroidism • Obstructive Sleep Apnea • Osteoarthritis/Osteoporosis • Atlantoaxial Instability & Cervical Spine Disorders (e.g. spinal stenosis) • Celiac Disease • Increased Alzheimer's dz risk • ~50% by age 60 (Ndss.org) • NOT inevitable Aging with Cerebral Palsy (Peterson et al, 2012) • Premature Aging (between 20-40 yrs) • Increased pain • Difficulty walking or muscle stiffness • Increased falls risk • Dental impairments • Long-term side effects of medications &/or surgeries • 25% of child walkers lose ability when older • OA/DJD/Overuse Syndromes/Nerve Entrapments (ucp.org) • Dysphagia • "Post-impairment Syndrome" (from CerebralPalsyGuide.com) Property of J McCoy/M Holt; not to be copied w/o permission 4 Adults w/IDD: Confronting Challenges 04/13/2018 Across the Health Care Continuum Secondary Conditions of What is Health? Concern to Older Adults with CP (Long & Kavarian, 2008) • Musculoskeletal deformities • Falls • Pain • Osteoporosis Previous Current • Cervical spine stenosis • Fractures • Absence of: • Global state of well-being: • Deconditioning • Pressure sores . Disease . Social . Disability . Emotional • Change in skills • Emotional issues . Mental (Long & Kavarian, 2008) Disability Models Medical Social (http://ukdhm.org/what-is-ukdhm/the-social-model/) The biopsychosocial model.9. Interaction among the components of the International Classification of Functioning, Disability and Health (ICF) model of functioning and disability.5. © 2014 by American Physical Therapy Association © 2014 by American Physical Therapy Association Property of J McCoy/M Holt; not to be copied w/o permission 5 Adults w/IDD: Confronting Challenges 04/13/2018 Across the Health Care Continuum Top 5 Reasons for Complications Hospitalization of Adults w/ID Following Hospitalization • People w/ intellectual disabilities (ID) have higher rates of complications than do patients w/o ID hospitalized for the same reasons. Seizure Respiratory Psychoses Disorders Infections • Potentially avoidable conditions: HCAIs, healthcare- acquired skin breakdown, falls, & medication errors/reactions. Septicemia Pneumonia • Adults w/ IDD tended to be 2x as likely to have complications following a surgical procedure & were nearly 4x as likely to have complications if they had multiple chronic health conditions. (Ailey et al, 2014) (Ailey et al, 2015) Complications Fall Risk Factors (Ailey et al, 2015) (Brady & Lamb, 2008; Renfro et al, 2017) Table 1. Intrinsic fall risk factors by population • Respiratory • Integumentary General elderly population Individuals w/ developmental disabilities (in addition to general • Pain factors) Age Seizures (monthly or more) • Falls Use of an assistive device History of destructive behavior History of falls Change in behavior • Behaviors Visual impairments Antipsychotic medications Muscle weakness • Deep Vein Sleep disturbances Gait deficits Thrombosis Dizziness, postural hypotension Syncope • Infection/Sepsis (Centerforchange.com) Balance impairments From: A Conceptual Model for Identifying, Preventing, and From: A Conceptual Model for Identifying, Preventing, and Managing Secondary Conditions in People With Disabilities Managing Secondary Conditions in People With Disabilities Phys Ther. 2011;91(12):1728-1739. doi:10.2522/ptj.20100410 Phys Ther. 2011;91(12):1728-1739. doi:10.2522/ptj.20100410 Phys Ther | © 2011 American Physical Therapy Association Phys Ther | © 2011 American Physical Therapy Association Property of J McCoy/M Holt; not to be copied w/o permission 6 Adults w/IDD: Confronting Challenges 04/13/2018 Across the Health Care Continuum Hospital Experience (Iacono et al, 2014) " ...despite 20 years of research & government initiatives, people with intellectual disability continue to have poor hospital experiences." (From Bing images) (Iacono et al, 2014) (Iacono et al, 2014) • Delayed or no appropriate Fear of hospital Failure of diagnostic procedures encounter by • Not knowing what to expect hospital staff to person w/ ID • Diagnostic overshadowing • Not understanding situation; provide care fear of unfamiliar situation/environment • Failure/inability to identify/treat pain • General fear of