The individual supported living (ISL) manual: a planning and review instrument for individual supported living arrangements for adults with intellectual and developmental disabilities

2013 ◽  
Vol 58 (7) ◽  
pp. 614-624 ◽  
Author(s):  
E. Cocks ◽  
S. Thoresen ◽  
M. Williamson ◽  
R. Boaden
Keyword(s):  
Developmental Disabilities ◽  
Living Arrangements ◽  
Intellectual And Developmental Disabilities ◽  
Supported Living ◽  
The Individual

scholarly journals COVID-19 IDD: A global survey exploring the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers

2020 ◽  
Vol 3 ◽  
pp. 39 ◽  
Author(s):  
Christine Linehan ◽  
Tal Araten-Bergam ◽  
Julie Beadle-Brown ◽  
Christine Bigby ◽  
Gail Birkbeck ◽  
...  
Keyword(s):  
Intellectual Disability ◽  
Developmental Disabilities ◽  
Living Arrangements ◽  
Online Survey ◽  
Healthcare Access ◽  
National Level ◽  
Lessons Learned ◽  
Intellectual And Developmental Disabilities ◽  
Survey Team ◽  
The Impact

Background: This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin’s Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

‘A Defect in the Mind’: Cognitive Ableism in Swift’s Gulliver’s Travels

2018 ◽  
Author(s):  
D. Christopher Gabbard
Keyword(s):  
Eighteenth Century ◽  
Developmental Disabilities ◽  
Modern Concept ◽  
Intellectual And Developmental Disabilities ◽  
Extreme Form ◽  
Gulliver's Travels ◽  
Human Understanding ◽  
Scholarly Discussion ◽  
The Individual ◽  
The Mind

While John Locke’s impact on Jonathan Swift’s Gulliver’s Travels, an eighteenth-century satire, is a well-worn topic of scholarly discussion, Gulliver as the butt of a satire concerning an important aspect of Lockean epistemology has not been considered. In the 1690 Essay Concerning Human Understanding, Locke distinguishes between person (an abstract thinker) and man (an individual with a human shape but little capacity for thought). Locke’s differentiation underwrites the modern concept of intellectual and developmental disabilities. Cognitive ableism is the belief in the superiority of person over man, of the thinker over the individual with less capacity for thought. Approaching Book Four of the Travels from a disability studies perspective, this chapter argues that Locke’s person/man binary broadly comes into play, that the character of Gulliver straddles the person/man divide, and that his characterization parodies Locke’s distinction. Book Four satirizes cognitive ableism through its protagonist, who exhibits an extreme form of it.

Correlates of Everyday Choice and Support-Related Choice for 8,892 Randomly Sampled Adults with Intellectual and Developmental Disabilities in 19 States

2012 ◽  
Vol 50 (6) ◽  
pp. 486-504 ◽  
Author(s):  
Renáta Tichá ◽  
K. Charlie Lakin ◽  
Sheryl A. Larson ◽  
Roger J. Stancliffe ◽  
Sarah Taub ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Living Arrangements ◽  
The State ◽  
Intellectual And Developmental Disabilities ◽  
Sensory Impairment ◽  
Residential Setting ◽  
Behavioral Support ◽  
Residential Settings ◽  
Institutional Settings ◽  
Project Controlling

Abstract This article examines everyday choices made by 8,892 adults with intellectual and developmental disabilities (IDD) and support-related choices made by 6,179 adults with IDD receiving services from 19 state developmental disabilities program agencies that participated in the 2008–2009 National Core Indicators Project. Controlling for physical and sensory impairment, age, behavioral support, communication, and state, people in residential settings with 16 or more people had less everyday choice than those in other living arrangements. People with mild and moderate IDD had more control over everyday choices when living in their own homes, whereas people with severe and profound IDD had more control when living in agency homes of 3 or fewer residents. For people of all levels of IDD, institutional settings of 16 or more residents offered the lowest levels of everyday choice. Controlling for the same covariates, individuals with all levels of IDD living in their own homes had significantly more support-related choices than those in any other residential arrangement. Controlling for individual and residential setting characteristics, the state in which sample members lived was notably predictive of support-related choice. Overall, the tested variables accounted for 44% of the variability in everyday choice and 31% in support-related choice.

Effectiveness of a Caregiver Education Program on Providing Oral Care to Individuals with Intellectual and Developmental Disabilities

2012 ◽  
Vol 50 (3) ◽  
pp. 219-232 ◽  
Author(s):  
Nancy A Fickert ◽  
Diana Ross
Keyword(s):  
Developmental Disabilities ◽  
Oral Hygiene ◽  
Living Arrangements ◽  
Repeated Measures ◽  
Educational Program ◽  
Oral Care ◽  
Intellectual And Developmental Disabilities ◽  
Caregiver Education ◽  
Quasi Experimental ◽  
Hygiene Compliance

Abstract Caregivers who work in community living arrangements or intermediate care facilities are responsible for the oral hygiene of individuals with intellectual and developmental disabilities. Oral hygiene training programs do not exist in many organizations, despite concerns about the oral care of this population. The purpose of this study was to determine the effectiveness of a caregiver educational program. This study used a quasi-experimental one-group pretest/posttest design with repeated measures to describe the outcomes of an educational program. Program participants demonstrated oral hygiene skills on each other while being scored by a trained observer, after which they completed an oral hygiene compliance survey. After three months, a follow-up included the same posttest, demonstration of oral hygiene skills, and repeat of the compliance survey. Paired-sample t-tests of oral hygiene knowledge showed a statistically significant improvement from pretest to posttest and from pretest to three-month posttest. Oral hygiene skills and compliance improved. Results demonstrate evidence that caregiver education improves knowledge, skill, and compliance in oral hygiene. Further studies are required to demonstrate the value of providing oral hygiene education and training for caregivers of individuals with intellectual and developmental disabilities.

Virtual Reality Exercise Games for High School Students With Intellectual and Developmental Disabilities

2019 ◽  
Vol 35 (2) ◽  
pp. 87-96 ◽  
Author(s):  
Don D. McMahon ◽  
Brenda Barrio ◽  
Amanda K. McMahon ◽  
Kristen Tutt ◽  
Jonah Firestone
Keyword(s):  
Physical Activity ◽  
High School ◽  
Virtual Reality ◽  
High School Students ◽  
Developmental Disabilities ◽  
Intellectual And Developmental Disabilities ◽  
School Students ◽  
Design Data ◽  
Health Related ◽  
The Individual

Individuals with intellectual and developmental disabilities (IDD) are at greater risk of health-related issues due to obesity and lack of physical activity. This study examined using virtual reality (VR) exergaming to increase the physical activity of high school students with IDD. Four students participated in this multiple probe across participants design. Data were collected on each student’s total amount of time engaged in exercise and heart rate. Results indicate that all students increased the duration and intensity of their physical activity when using the VR exercise gaming (exergaming) intervention. The VR exergaming intervention increased the duration and intensity of the students’ exercise sessions. Results are discussed in terms of applying VR and other emerging technologies to support the exercise health needs of the individual in the study.

Who Helps? Characteristics and Correlates of Informal Supporters to Adults With Disabilities

2017 ◽  
Vol 122 (6) ◽  
pp. 492-510 ◽  
Author(s):  
Kelli A. Sanderson ◽  
Meghan M. Burke ◽  
Richard C. Urbano ◽  
Catherine K. Arnold ◽  
Robert M. Hodapp
Keyword(s):  
Developmental Disabilities ◽  
National Survey ◽  
People With Disabilities ◽  
Intellectual And Developmental Disabilities ◽  
Adult Siblings ◽  
Adults With Disabilities ◽  
Functioning Level ◽  
The Individual ◽  
Informal Supports

Abstract This study examined who provides informal (or unpaid) supports to people with intellectual and developmental disabilities (IDD). Participants included 657 adult siblings of people with disabilities who responded to a national survey about informal supports in the areas of recreation, employment, and housing. Results indicated that most people with IDD received informal supports, with parents and sibling respondents most often providing those supports. Support was most commonly received in recreation, as opposed to housing or employment. Asked to list nonfamily informal supporters, respondents often mentioned paid staff and disability organizations. Correlates of total numbers of informal supporters included the individual with disability's functioning level and parents' ability to care for their offspring with disabilities.

scholarly journals COVID-19 IDD: A global survey exploring family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers.

2020 ◽  
Vol 3 ◽  
pp. 39
Author(s):  
Christine Linehan ◽  
Tal Araten-Bergam ◽  
Jennifer Baumbusch ◽  
Julie Beadle-Brown ◽  
Christine Bigby ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Living Arrangements ◽  
Online Survey ◽  
Healthcare Access ◽  
National Level ◽  
Family Members ◽  
Lessons Learned ◽  
Intellectual And Developmental Disabilities ◽  
Survey Team ◽  
The Impact

Background: This protocol outlines research to explore family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 18 countries worldwide for international comparison. The survey team have extensive personal and professional networks and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin’s Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

Goal Attainment Scaling: A Framework for Research and Practice in the Intellectual and Developmental Disabilities Field

2021 ◽  
Vol 59 (1) ◽  
pp. 7-21
Author(s):  
Karrie A. Shogren ◽  
Evan E. Dean ◽  
Kathryn M. Burke ◽  
Sheida K. Raley ◽  
Julie Lounds Taylor
Keyword(s):  
Developmental Disabilities ◽  
Goal Setting ◽  
Goal Attainment ◽  
Planning Process ◽  
Outcome Measure ◽  
Goal Attainment Scaling ◽  
Intellectual And Developmental Disabilities ◽  
Evidence Based Practices ◽  
Ongoing Work ◽  
The Individual

Abstract Goal setting and attainment is often a targeted outcome in the intellectual and developmental disabilities field; however, standardizing the measurement of attainment of individualized goals is challenging. The purpose of this article is to introduce a four-domain framework that provides a series of questions to research and evaluation teams in planning for the use of goal attainment scaling (GAS) as an outcome measure at the individual or aggregate level. We intend to stimulate discussion and ongoing work to further systematize how GAS is used in (a) intervention research to establish evidence-based practices and (b) practice to assess the extent to which interventions and supports lead to intended outcomes. The goal is to promote a clear planning process to inform data collection on individualized goal attainment outcomes that are rooted in goals and outcomes valued by people with intellectual and developmental disabilities.

Understanding Decision Making Among Individuals With Intellectual and Developmental Disabilities (IDD) and Their Siblings

2019 ◽  
Vol 57 (1) ◽  
pp. 26-41 ◽  
Author(s):  
Meghan M. Burke ◽  
Chung eun Lee ◽  
Sarah A. Hall ◽  
Zach Rossetti
Keyword(s):  
Decision Making ◽  
Developmental Disabilities ◽  
Independent Living ◽  
Leisure Activities ◽  
Final Decision ◽  
Intellectual And Developmental Disabilities ◽  
Caregiving Roles ◽  
The Individual ◽  
Constant Comparative Analysis ◽  
Brothers And Sisters

Abstract Many siblings anticipate fulfilling caregiving roles for their brothers and sisters with intellectual and developmental disabilities (IDD). Given these roles and the importance of supported decision making, it is crucial to understand how individuals with IDD and their siblings make decisions. Using dyadic interviews, we examined the perspectives of nine sibling dyads (N = 18) about decision making in relation to self-determination, independent living, and employment. The ages of participants ranged from 19 to 57. Data were analyzed using constant comparative analysis to identify themes. Decision making was characterized by: parents and siblings primarily identifying courses of action; the probability of respective consequences based on the person-environment fit; and the role of the sibling in making the final decision. Characteristics related to the individual with IDD, the family, the sibling, and the environment impacted decision making. Individuals with IDD were more likely to make their own decisions about leisure activities; however, siblings were more likely to make formal decisions for their brothers and sisters.

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