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COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State

LANDES, Scott D.
TURK, Margaret A.
FORMICA, Margaret K.
McDONALD, Katherine E.
STEVENS, J. Dalton
June 2020

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In order to investigate whether people with intellectual and developmental disabilities (IDD) are at higher risk of severe outcomes from COVID-19, the COVID-19 outcomes among people with IDD living in residential groups homes in the state of New York and the general population of New York State were compared. Data for people with IDD are from a coalition of organizations providing over half of the residential services for the state of New York, and from the New York State Department of Health. Analysis describes COVID-19 case rates, case-fatality, and mortality among people with IDD living inresidential group homes and New York State through May 28, 2020

 

Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2020.100969

 

Contingent Electric Shock as a Treatment for Challenging Behavior for People With Intellectual and Developmental Disabilities: Support for the IASSIDD Policy Statement Opposing Its Use

ZARCONE, Jennifer R
MULLANE, Michael P
LANGDON, Peter E
BROWN, Ivan
2020

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Issues: The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, and self-advocates that promotes worldwide research and exchange of information on intellectual and developmental disabilities. IASSIDD recently developed a policy statement regarding their opposition to the use of contingent electric skin shock (CESS) with individuals with challenging behavior and intellectual and developmental disabilities. To support the policy, the available literature was reviewed to evaluate the efficacy, side effects, generalization, and long-term effectiveness of the procedure as an intervention for challenging behavior.


Findings: The review provides a history that demonstrates that, although CESS can decrease the frequency of challenging behavior, it comes at a cost in terms of physical and emotional side effects, and questions remain regarding the long-term effectiveness of the procedure. In addition, we raise several ethical and methodological issues that make the research on the use of CESS even more concerning.


Conclusions: Although research continues in some countries, these studies are now rare. In fact, in the United States, the Food and Drug Administration has just banned the use of such devices with individuals with self-injury and aggression. It is hoped that, because there are many other forms of treatment that have shown to be effective for severe challenging behavior, we can completely avoid the use of CESS.

Adding meaning to physical fitness test results in individuals with intellectual disabilities

OPPEWAL, Alyt
HILGENKAMP, Thessa I M
February 2019

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Purpose: Evaluating physical fitness in individuals with intellectual disabilities (ID) is challenging, and a multitude of different versions of tests exist. However, psychometric properties of these tests are mostly unknown, and both researchers as clinical practitioners struggle with selecting appropriate tests for individuals with ID. We aim to present a selection of field tests with satisfactory feasibility, reliability, and validity, and of which reference data are available.

 

Methods: Tests were selected based on (1) literature review on psychometric properties, (2) expert meetings with physiotherapists and movement experts, (3) studies on population specific psychometric properties, and (3) availability of reference data. Tests were selected if they had demonstrated sufficient feasibility, reliability, validity, and possibilities for interpretation of results.

 

Results: We present a basic set of physical fitness tests, the ID-fitscan, to be used in (older) adults with mild to moderate ID and some walking ability. The ID-fitscan includes tests for body composition (BMI, waist circumference), muscular strength (grip strength), muscular endurance (30 second and five times chair stand), and balance (static balance stances, comfortable gait speed).

 

Conclusions: The ID-fitscan can be used by researchers, physiotherapists, and other clinical practitioners to evaluate physical fitness in adults with ID. Recommendations for future research include expansion of research into psychometric properties of more fitness tests and combining physical fitness data on this population in larger datasets.

Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability

DOUGLAS, Jacinta
BIGBY, Christine
November 2018

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Purpose: At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains.

 

Methods: The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway.

 

Results: The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals.

 

Conclusions: This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.

The medical inadmissibility of intellectual disability: A postcolonial reading of Canadian immigration systems

SPAGNUOLO, Natalie
2016

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This article builds upon existing critiques of Canada’s immigration system by focusing on the medical inadmissibility of young people labelled with intellectual disabilities. In considering how the Canadian state regulates applications for permanent residency, it explores discourses and practices of citizenship which invoke mutually-constituting identity markers such as disability and race. A close reading of case studies involving family applicants, demonstrates how immigration policies and legal systems frame the needs of young people labelled with intellectual or ‘profound’ disabilities as a burden to Canadian society. Individuals who were initially denied admission to Canada due to their diagnostic label, experience disability-related discrimination in different ways depending on the role of their perceived racial, gender, and class identities, among others. The individuals considered in this study navigate intersectional identities and ableist legal systems in their efforts to resist discrimination and win a review of their residency applications. This analysis will show that applicants are forced to work through the logic of medical assessment processes to favourably position their children within impairment hierarchies which rank intellectual disability as ‘too disabled’ to be admissible.

 

Disability & the Global South (DGS), 2016, Vol. 3 No. 2

Education through an ability studies lens

WOLBRING, Gregory
YUMAKULOV, Sophya
2015

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The purpose of this article is to engage with ability expectations evident in the education setting. The authors provide quantitative data on the ability expectation sentiment of children in the education setting from 1851-2014, using the NYT as a source and discuss the future impact of changing ability expectations including the ability expectation that humans enhance themselves beyond the species-typical for the education system (section 3). It also discusses the term learning disability (LD) through the lens of changing ability expectations (section 4) and posit sthat the ability studies framework allows for a new community of practice bringing together people and ideas from disability studies and other fields in an innovative way

Zeitschrift für Inklusion 10(2)

Bridging aging and developmental disabilities service networks : challenges and best practices

FACTOR, Alan
HELLER, Tamar
JANICKI, Matthew
March 2012

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This reports aims to provide the "best practices guide to encourage the ‘bridging’ of the aging and developmental disabilities service networks that are both in need of including managed long-term, integrated care for people who are dually eligible for Medicaid and Medicare, and rebalancing initiatives that promote community living"

Rocking the cradle : ensuring the rights of parents with disabilities and their children

NATIONAL COUNCIL ON DISABILITY
2012

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"The report analyzes how U.S. disability law and policy apply to parents with disabilities in the child welfare and family law systems, and the disparate treatment of parents with disabilities and their children. Examination of the impediments prospective parents with disabilities encounter when accessing assisted reproductive technologies or adopting provides further examples of the need for comprehensive protection of these rights"

Inclusive democracies require voting rights for people with disabilities

NEIER, Aryeh
November 2011

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This blog post presents the story of a woman with Down Syndrome who initially was prevented from voting in Peruvian elections because of her intellectual disability but successfully won her right to vote. The article concludes by encouraging inclusive policies that support the participation of people with disabilities in political life
Note: This post is part of a blog series that reflects on The Open Society Foundations work to advance the rights of persons with disabilities around the world

The efficacy of community based rehabilitation for children with or at significant risk of intellectual disabilities in low and middle income countries : a review

ROBERTSON, Janet
EMERSON, Eric
HATTON, Chris
August 2009

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"The aim of the present review is to summarise evidence regarding the efficacy of CBR in relation to one particular ‘high risk’ group of disabled children; children with intellectual disabilities (ID)...Only 10 studies were identified for inclusion in the review of research on the effectiveness of CBR for children and adolescents with ID and these are summarised in Appendix Two. An examination of reviews on the effectiveness of CBR for all people with disabilities points to two main reasons for this low level of evidence. Firstly, CBR has not been the subject of a significant amount of rigorous evaluation. Secondly, children and adolescents with ID have not been the recipients of significant amounts of CBR. We will discuss the reviews on the effectiveness of CBR generally and indicate what they say about ID before outlining the extremely small amount of information available on the effectiveness of CBR for children and adolescents with ID"
CeDR Research Report 2009:4

'UN in action' Paraguay : Jorge and Julios' Story

UNITED NATIONS TELEVISION
2009

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The documentary highlights the importance of the right to community integration. It follows a young man, Jorge, who went from living in a caged cell to a life in the community and highlights Mental Disability Rights International's (MDRI) work in Paraguay, where international human rights law was used to end life-threatening abuses in psychiatric facilities and lay the groundwork for a new system of community care. This film would be beneficial for people interested in human rights and advocacy for people with learning disabilities

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