Intellectual Disability Among Children
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Navigating the Developmental Disability Waivers: a Guide for Individuals, Families, and Support Partners
Navigating the Developmental Disability Waivers: A Guide for Individuals, Families, and Support Partners Department of Behavioral Health and Developmental Services Division of Developmental Services Sixth Edition Updated June 2019 Introduction Introduction: A Guide for Individuals, Families and Support Partners Following the redesign of Virginia’s Developmental Disability (DD) Waivers in 2016, individuals, and families requested to have information made available that would be easy to follow and understand. The 2017 update to the Navigating the Waivers workbook has been designed to do just that. The purpose of this book is to guide individuals, families and support partners through Virginia’s Home and Community-Based Developmental Disability Waivers (otherwise known as the DD Waivers). While the DD Waivers have the most support options of any of the Virginia Waivers and offer opportunities for flexibility and creativity, the process for obtaining and utilizing the waivers can be challenging to navigate. We hope that you will use this guidebook to not only become familiar with the DD Waivers, but also to become empowered to be an even better advocate for yourself or someone you are supporting. How to Use This Book In this guidebook there are nine sections. The first section is the Table of Contents. In Sections 2-5 you will find these sections split into three parts: In One Page; The Basics; and The Details. In One Page — This one page description is for individuals. The Basics — This two paged Q&A is for families. The Details — This section is for the individual, family member, or any other interested party who is looking for the regulations regarding the information in that section. -
Dual Diagnosis.” This Term Is Used When a Person with a Developmental Disability Also Has a Mental Illness
Diagnosis DiagDiagnosisnosis A Guidebook for Caregivers healthytransitionsny.org Susan Scharoun, Ph.D. is the author of this guidebook. She is the current Chairperson of the Department of Psychology at LeMoyne College where she teaches undergraduate courses in Brain and Behavior, The Psychology of Disabilities, Motivation and Emotion, Human Lifespan Development and Disorders of Childhood. Dr. Scharoun is also a Psychologist with the New York State Office for People with Developmental Disabilities. She has over twenty years of experience working with children and adults who have developmental disabilities in residential, vocational, academic and home settings. She is also a sibling of a person with a developmental disability. Dear Caregivers, I am a psychologist who helps people who have “dual diagnosis.” This term is used when a person with a developmental disability also has a mental illness. It is often hard to diagnose a mental illness in a person who has a developmental disability. However, in order to provide effective treatment, it is very important to differentiate symptoms of a mental disorder from behaviors associated with the developmental disability. Many people who have a developmental disability have a difficult time conveying accurate information at the time of assessment. Parents, siblings, or even direct support staff and other service providers can be valuable resources in defining the symptoms and identifying behaviors of concern. This guidebook gives caregivers the tools they need to understand how mental illness might look in a person with a developmental disability, and information on what to do and where to go for help. It was written in order to help caregivers to partner with health care providers. -
Intellectual Disability
University of New Hampshire Institute on Disability/UCED Intellectual and Developmental Disabilities Overview Jill Hinton, Ph.D. Clinical Director Center for START Services 2015 Jill Hinton, Ph.D. 1 University of New Hampshire Institute on Disability/UCED Developmental Disability Federal Definition • Developmental Disability means a disability that is manifested before the person reaches twenty-two (22) years of age, • is likely to continue indefinitely, • results in substantial functional limitations, • is attributable to intellectual disability or related conditions which include cerebral palsy, epilepsy, autism or other neurological conditions, and • reflects the individual’s need for assistance that is lifelong or extended duration that is individually planned and coordinated. University of New Hampshire Institute on Disability/UCED Developmental Disabilities may include: • Intellectual Disability • Autism Spectrum Disorder • Muscular Dystrophy • Cerebral Palsy • Fetal Alcohol Syndrome • TBI • Some genetic disorders (Down Syndrome, Prader- Willi, Fragile X) 3 University of New Hampshire Institute on Disability/UCED Intellectual Disability • Intellectual disability is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. • Generally an IQ score of around 70 or less indicates a limitation in intellectual functioning • adaptive behavior includes three skill types: Conceptual skills—language and literacy; money, time, and number concepts; and self-direction. Social skills—interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, and the ability to follow rules/obey laws and to avoid being victimized. Practical skills—activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone. -
Practice Guidelines for the Assessment and Diagnosis Of
Practice Guidelines forthe Assessment and Diagnosis of Mental Health Problems in Adults with Intellectual Disability Practice Guidelines In the last decade the professional knowledge concerning the problems for the Assessment of mental health among persons with intellectual disability has grown significantly. Behavioural and psychiatric disorders can cause serious and Diagnosis of obstacles to individual’s social integration. Clinical experience and research show that the existing diagnostic Mental Health systems of DSM-IV and ICD-10 are not fully compatible when making a psychiatric diagnosis in people with intellectual disability. This may be Problems in Adults one of the reasons why the evidence-based knowledge on the assessment and diagnosis of mental health problems in people with intellectual with Intellectual disability is still scarce. Disability This is the reason for the European Association for Mental Health in Mental Retardation (MH-MR) supporting the current project to Shoumitro Deb, produce a series of Practice Guidelines for those working with people Tim Matthews, with intellectual disability, to encourage and promote evidence-based Geraldine Holt & Nick Bouras practice. This is the first publication of the series. ISBN 1-84196-064-0 Practice Guidelines for the Assessment and Diagnosis of Mental Health Problems in Adults with Intellectual Disability Practice Guidelines for the Assessment and Diagnosis of Mental Health Problems in Adults with Intellectual Disability Shoumitro Deb, Tim Matthews, Geraldine Holt & Nick Bouras Practice Guidelines for the Assessment and Diagnosis of Mental Health Problems in Adults with Intellectual Disability © Shoumitro Deb, Tim Matthews, Geraldine Holt & Nick Bouras Shoumitro Deb, Tim Matthews, Geraldine Holt & Nick Bouras have asserted their rights under the Copyright, Designs and Patent Act 1988 to be recognised as the authors of this work. -
Determination of Intellectual Disability (DID): Best Practice Guidelines
Determination of Intellectual Disability: Best Practice Guidelines April 1, 2016 revised March 1, 2018 This document is also available at: https://hhs.texas.gov/doing-business-hhs/provider-portals/long-term- care-providers/local-intellectual-developmental-disability-authority- lidda/did-best-practice-guidelines Contents Purpose and Scope .................................................................................................................. 1 1. Diagnosis of Intellectual Disability ................................................................................... 1 a) General guidelines ....................................................................................................... 1 b) Guidelines for children ................................................................................................ 2 2. Selection of Assessment Instruments and Tests ................................................................ 3 a) General guidelines ....................................................................................................... 3 b) For individuals with blindness or other visual impairment ......................................... 4 c) For individuals with a motor impairment .................................................................... 5 d) For individuals with a communication impairment ..................................................... 5 e) Use of brief assessment instruments and tests ............................................................. 6 f) When a standardized intellectual assessment -
Dementia in People with Intellectual Disability: Guidelines for Australian
Faculty of Medicine, The Department of Developmental Disability Neuropsychiatry 3DN Dementia in people with Intellectual Disability: Guidelines for Australian GPs. Elizabeth Evans Research Fellow Department of Developmental Disability Neuropsychiatry School of Psychiatry, Faculty of Medicine University of New South Wales, Sydney [email protected] Professor Julian Trollor Chair, Intellectual Disability Mental Health Head, Department of Developmental Disability Neuropsychiatry School of Psychiatry, Faculty of Medicine University of New South Wales, Sydney [email protected] © Department of Developmental Disability Neuropsychiatry UNSW 2018 1 Contents Summary of key recommendations ................................................................................................ 3 Short summary version: ................................................................................................................. 4 Literature Review – Dementia in ID ................................................................................................ 8 Prevalence and incidence of dementia in ID. .............................................................................. 8 Risk factors for dementia in people with ID ................................................................................. 8 Presentation of dementia in people with ID ................................................................................. 9 Assessment of dementia in people with ID ................................................................................ -
NCI Data Brief: Dual Diagnosis
National Core Indicators™ DATA BRIEF OCTOBER 2019 What Do NCI Data Reveal About People Who Are Dual Diagnosed with ID and Mental Illness? By Valerie Bradley, Dorothy Hiersteiner and Jessica Maloney, Human Services Research Institute; Laura Vegas and Mary Lou Bourne, National Association of State Directors of Developmental Disabilities Services The understanding that people can be dually diagnosed with intellectual disability (ID) and mental illness is relatively recent. Up until the last 30 to 40 years, it was assumed that people with ID could not also have a mental illness,1 and behavioral challenges were seen as a consequence of cognitive limitations rather than possible symptoms of underlying psychiatric conditions. This view shifted as people with ID increasingly resided in and received supports in the community, as they exercised their rights in communicating and representing themselves, and as realization grew about the widespread and long-term impacts of trauma and abuse on health, mood, and behavior. The understanding of how to provide services and supports to people who are dual diagnosed continues to deepen and expand. In this data brief we examine National Core Indicators™ (NCI™) data from 2017-2018 to explore the characteristics and outcomes of people with dual diagnoses with the hope that it will add to a growing body of knowledge. 1 Background Prior to the 1980s and 1990s, it was assumed that people with intellectual disabilities could not also have a mental illness,2 and behavioral challenges were seen as a consequence of cognitive limitations. At the time, restraints, medication, and punishment were meted out to control behavior, with medications viewed as a means to restrain rather than as treatment for a condition. -
Anxiety and Anxiety Disorders L
Anxiety and Anxiety Disorders L. Jarrett Barnhill, MD, DFAPA, FAACAP This section provides a brief overview of the adjunctive role for psychotropic drugs in the treatment of Anxiety Disorders in individuals with Intellectual and Developmental Disabilities (IDD) and Autism Spectrum Disorders (ASD). In this context, pharmacotherapy is part of a comprehensive treatment plan, not a stand-alone intervention. From Anxiety to Anxiety Disorders Anxiety represents a spectrum of emotional, somatic, and cognitive responses to both external and internal threats. The core features of anxiety arise from the basic neurobiology of fear (flight, fight, or freeze reactions) and fear-conditioned process that include generalization, sensitization, and resistance to extinction. At higher cortical levels, more complex neurocognitive processes generate anticipatory anxiety, agoraphobia, avoidance in response to perceived social disapproval, skill deficits in problem solving, intolerance of uncertainty, and anticipation of future threats. Pathological anxiety is a step beyond developmental anxiety. It is anxiety that morphs out of the effects of trauma experiences, early loss, family chaos, and significant skill/problem solving deficits. Pathological anxiety usually presents as both internalizing and externalizing signs and symptoms that do not meet the full criteria for anxiety disorders. In at risk children, it may be a marker for prodromal or subsyndromal forms of anxiety disorders. An imbalance between genetic risk, life stressors and compromised resilience contribute to its progress towards full syndrome anxiety disorder. The diagnosis of Anxiety Disorders (AD) requires meeting current diagnostic criteria. The DSM-51 and DM-ID-22 include Specific Phobias, Separation Anxiety, Selective Mutism, Panic, Social Anxiety, Agoraphobia, Generalized Anxiety, Specified and Unspecified Anxiety Disorders, as well as Anxiety Disorder due to Another Medical Disorder. -
Chapter 5: Intellectual Disability
Chapter 5: Intellectual disability Gary E. Martin1, Michelle Lee2 and Molly Losh2 1 St. John's University, Staten Island, New York, USA 2 Northwestern University, Evanston, Illinois, USA Abstract: Pragmatic language skills are often impacted in individuals with intellectual disability, a developmental condition defined by deficits in intellectual and adaptive skills. In this chapter, we review the literature on pragmatic language in three genetically-based causes of intellectual disability – Down syndrome, fragile X syndrome, and Williams syndrome. We focus on group- comparison studies of young verbal individuals and cover a range of critical pragmatic skills (e.g. speech acts, topic initiation and maintenance, management of communication breakdowns, and narrative). We draw special attention to matching strategies utilized in the design of these studies which have critical implications for interpreting existing literature and guiding future studies. We conclude with discussions of theoretical implications, research directions, and clinical applications based on our review. Key words: communication; Down syndrome; fragile X syndrome; genetic disorder; intellectual disability; language; neurodevelopmental disorder; pragmatics; Williams syndrome Reference: Martin, G.E., Lee, M., & Losh, M. (2017) 'Intellectual disability', in L. Cummings (ed.), Research in Clinical Pragmatics, Series: Perspectives in Pragmatics, Philosophy & Psychology, Vol. 11, Cham, Switzerland: Springer-Verlag. ISBN: 978-3-319-47487-8 (hardcover); 978-3-319-47489-2 (eBook) -
People with Intellectual Disabilities and Dementia Considerations for a Dementia Friendly Community Description
People with Intellectual Disabilities and Dementia Considerations for a Dementia Friendly Community Description Intellectual Disability (ID) Developmental Disability (DD) – Below normative – Manifests before age 22, intellectual functioning, due – Is attributed to a mental and/or to cognitive impairment physical impairment, – Results in substantial functional (organic or functional) limitations in 3 or more major life present since birth or activities including: infancy (NB: Before age 18) • self–care, – • receptive and expressive Not a mental illness or language, psychiatric impairment • learning, – Varies in degree and co- • mobility, impairment • self–direction, – Compensated by training, • capacity for independent living, and education, remediation, • economic self–sufficiency, habilitation, supports for – And requires special & individualized life activities services over the lifespan Dementia in adults with ID • People with ID are growing older • ‘Early onset’ dementia in Down syndrome (DS) • Challenges to diagnosis and care (DDS) – Key: loss/change from previous level of function • Assessments • Care guidelines- Shift Philosophy • Life Story-Importance The link between Alzheimer’s Disease and Down syndrome • 3 copies of chromosome 21 in DS (trisomy) • Amyloid precursor protein (APP) is coded on 21, and is associated with a protein that leads to senile plaques • Other genes on chromosome 21 may contribute to increased genetic risk of AD Epidemiology of Alzheimer’s Disease in Down Syndrome • Alzheimer’s disease is NOT inevitable in adults with DS • Estimates have historically fluctuated and research has been flawed by variability in diagnostic methods, characteristics of patients studied, etc. • Average age of onset: between 50-55 y.o. • Incidentally…older adults with non-DS ID are not felt to be at higher risk of developing AD (risk is same as general population) • Majority of adults with Down syndrome who develop Alzheimer’s disease (on average) have a life expectancy between 4 - 7.5 years. -
Intellectual Disability in Children with Autism Spectrum Disorders
International Journal of Humanities Social Sciences and Education (IJHSSE) Volume 1, Issue 10, October 2014, PP 1-4 ISSN 2349-0373 (Print) & ISSN 2349-0381 (Online) www.arcjournals.org Intellectual Disability in Children with Autism Spectrum Disorders Migena Kika, MD, National Center for Growth, Development and Rehabilitation of Children, Tirana, Albania, [email protected] Abstract: AIM: To assess the frequency of intellectual disability in children diagnosed with ASD. METHODS: A total of 98 children aged from 2 to 8 years of age were evaluated for ASD and their level of cognition in the National Center for Growth, Development and Rehabilitation of Children in Tirana, Albania. Griffiths Development scales from 0 to 2 years of age and SON-R (Snijders- Oomen Nonverbal Intelligence Test) from 2 to 8 years of age was used to assess the cognition and the intellectual disability if any in all the children that participated in the study. All ASD subjects met the criteria of DSM -IV and were given the diagnosis using ADOS and ADI-R tests. All ASD children were children diagnosed with infantile autism and PDD-NOS. Children with Asperger, Rett syndrome and Childhood Disintegrative Disorder were excluded from the study. They were chosen randomly and signed a consent form of participation in the study. RESULTS: From the total of 98 children 8 of them had an IQ score above 70 in one of the above intelligent tests (8 % of the total ASD children). 21 of the children had an IQ score from 70 to 55(mild intellectual disability, 21% of the total ASD children). -
Modified Treatment of Post-Traumatic Stress Disorder with Individuals Who Have a Developmental Disability Abstract
Modified Treatment of Post-Traumatic Stress Disorder with Individuals Who Have a Developmental Disability Abstract Volume 19, Number 1, 2013 On a daily basis somebody encounters a traumatic event. People who have a developmental disability encounter such events three to four times more often. As a consequence of some Authors of these traumatizing events, post-traumatic stress disorder (PTSD) results. Psychotherapy has been proven to be neces- Cheryl Bedard sary and effective in aiding with some of the symptomatology. This article outlines some modifications that have been devel- Adult Program, oped in order to provide psychotherapy to individuals who have Surrey Place Centre, a developmental disability. Toronto, ON Years ago, it was believed that the only way to provide treat- ment to individuals who have intellectual or developmental disability (IDD) was through pharmacology. Then with the advent of behaviour therapy, this treatment approach was added. Later on came the advent and use of psychotherapy. Pharmacology can sometimes mask the problem. Behaviour therapy addresses the symptoms of the person’s difficulty. Psychotherapy is said to try and address the underlying cause or root of the problem. Most of the research related to persons who have a developmental disability is in the areas of medical or behavioural research. With the arrival of psychotherapy as a mode of treatment, more and more research has begun to look at the efficacy of this approach (i.e., evidence based treat- ment) with regards to its utilization in persons with IDD. The current article will look at modifications that have been used in the treatment of post-traumatic stress disorder (PTSD) in IDD during 25 years of clinical practice.