Mothers and fathers with intellectual and developmental disabilities who use US disability services: prevalence and living arrangements

2021 ◽  
Author(s):  
R. J. Stancliffe ◽  
S. L. Pettingell ◽  
R. Tichá ◽  
J. Houseworth
Keyword(s):  
Developmental Disabilities ◽  
Living Arrangements ◽  
Disability Services ◽  
Intellectual And Developmental Disabilities ◽  
Mothers And Fathers

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.

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.

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.

A Pilot Study of a Future Planning Program for Siblings of People With Intellectual and Developmental Disabilities

2021 ◽  
Vol 59 (1) ◽  
pp. 70-83
Author(s):  
Chung E. Lee ◽  
Meghan M. Burke
Keyword(s):  
Developmental Disabilities ◽  
Family Communication ◽  
Qualitative Data ◽  
Disability Services ◽  
Intellectual And Developmental Disabilities ◽  
Future Planning ◽  
Attrition Rates ◽  
Participant Satisfaction ◽  
Caregiving Roles ◽  
Step Program

Abstract Given the increased longevity of people with intellectual and developmental disabilities (IDD), future planning programs are becoming increasingly common. However, although siblings are likely to fulfill caregiving roles for people with IDD, siblings have not been included in future planning interventions. The purpose of this study was to evaluate the outcomes and feasibility of the Sibling Training for Early future Planning (STEP) program. Using quantitative and qualitative data, 18 siblings of individuals with IDD participated in the study. After completing the STEP program, participants demonstrated significantly improved feelings of empowerment, disability connectedness, family communication, and knowledge of adult disability services. The STEP program was also feasible given high attendance, low attrition rates, and high participant satisfaction. Implications for research and practice are discussed.

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