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.

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.

scholarly journals Stigma experienced by family members of people with intellectual and developmental disabilities: multidimensional construct

BJPsych Open ◽  
2018 ◽  
Vol 4 (5) ◽  
pp. 332-338 ◽  
Author(s):  
Natasha Mitter ◽  
Afia Ali ◽  
Katrina Scior
Keyword(s):  
Developmental Disabilities ◽  
Caregiver Burden ◽  
Family Members ◽  
Well Being ◽  
Autism Spectrum ◽  
Self Report ◽  
Intellectual And Developmental Disabilities ◽  
Subjective Well Being ◽  
Good Reliability ◽  
The Impact

BackgroundThere is a lack of good-quality instruments measuring stigma experienced by family members of stigmatised people.AimsTo develop a self-report measure of stigma among families of people with intellectual and developmental disabilities and examine associations between family stigma and other variables.MethodThe new Family Stigma Instrument (FAMSI) was tested with 407 family carers, 53% of whose offspring had an autism spectrum disorder in addition to intellectual disability. They also completed measures of subjective well-being, caregiver burden, self-esteem and social support.ResultsThe FAMSI yielded a five-factor structure and had good reliability. Perceived family stigma, caregiver burden and subjective well-being were the strongest predictors of family stigma.ConclusionsThis instrument can advance our understanding of the impact of stigma on family members. It can also help us understand sociodemographic, psychosocial and contextual variables of both the carer and cared for person that may influence family members' experiences.Declaration of interestNone.

The Effects of Technology Supports on Community Grocery Shopping Skills for Students With Intellectual and Developmental Disabilities: A Meta-Analysis

2021 ◽  
pp. 016264342198997
Author(s):  
Sojung Jung ◽  
Ciara Ousley ◽  
David McNaughton ◽  
Pamela Wolfe
Keyword(s):  
Developmental Disabilities ◽  
Positive Impact ◽  
Single Case ◽  
Effect Sizes ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Positive Effects ◽  
Analytic Review ◽  
Wide Range ◽  
The Impact

In this meta-analytic review, we investigated the effects of technology supports on the acquisition of shopping skills for students with intellectual and developmental disabilities (IDD) between the ages of 5 and 24. Nineteen single-case experimental research studies, presented in 15 research articles, met the current study’s inclusion criteria and the What Works Clearinghouse (WWC) standards. An analysis of potential moderators was conducted, and we calculated effect sizes using Tau-U to examine the impact of age, diagnosis, and type of technology on the reported outcomes for the 56 participants. The results from the included studies provide evidence that a wide range of technology interventions had a positive impact on shopping performance. These positive effects were seen for individuals across a wide range of ages and disability types, and for a wide variety of shopping skills. The strongest effect sizes were observed for technologies that provided visual supports rather than just auditory support. We provide an interpretation of the findings, implications of the results, and recommended areas for future research.

scholarly journals IMPACT OF COVID-19 PANDEMIC ON MENTAL HEALTH AND ASSOCIATED RISK FACTORS

2021 ◽  
Vol 56 (5) ◽  
pp. 213-224
Author(s):  
Jung Nam Sohn
Keyword(s):  
Mental Health ◽  
Suicidal Ideation ◽  
Online Survey ◽  
Common Factor ◽  
National Level ◽  
Intolerance Of Uncertainty ◽  
Health Promotion Program ◽  
Sufficient Information ◽  
Individual Level ◽  
The Impact

This descriptive study provides basic data for developing a mental health promotion program by analyzing the mental health status under the impact of COVID-19 and verifying the factors affecting mental health. This study aims to identify the prevalence and associated factors of mental health after the COVID-19 pandemic. An online survey was conducted targeting a total of 156 Korean adults aged 19~64 years. Using the SPSS Win 19.0 program, the frequency, mean, t-test or ANOVA, X2-test, linear regression, and logistic regression analysis were performed. A total of 31.4%, 20.5%, and 12.8% of all subjects classified depression, anxiety, and suicidal ideation risk, respectively, and intolerance of uncertainty affected depression (β = .51) and anxiety (β = .63). In addition to intolerance of uncertainty, self-efficacy (β = -.16) was a factor affecting depression. The variables explain 35% of depression and 44% of anxiety. Further, employment status affected suicidal ideation, which increased the risk of suicidal ideation 2.71-fold with unemployed status. This paper is novel because it seeks to find that the intolerance of uncertainty was the common factor affecting mental health during COVID-19. The early detection of risk due to COVID-19 and the intolerance of uncertainty are common factors underlying mental health issues, underscoring the need for cognitive interventions at the individual level and sufficient information and psychological support related to the COVID-19 at the national level.

The Experiences and Perceptions of College Peer Mentors Interacting with Students with Intellectual and Developmental Disabilities

2020 ◽  
Vol 45 (4) ◽  
pp. 271-287
Author(s):  
Lindsay S. Athamanah ◽  
Marisa H. Fisher ◽  
Connie Sung ◽  
Jinny E. Han
Keyword(s):  
High School Students ◽  
Developmental Disabilities ◽  
Peer Mentoring ◽  
Social Impact ◽  
Mentoring Programs ◽  
Future Research ◽  
Mentoring Program ◽  
Intellectual And Developmental Disabilities ◽  
Peer Mentors ◽  
The Impact

Peer mentoring programs provide an opportunity for individuals with and without intellectual and developmental disabilities (IDD) to learn, socialize, and work together in supportive and inclusive environments. In this study, we used a phenomenological research design to explore the impact of a college campus-based peer mentoring program on the experiences and perceptions of participating college peer mentors ( n = 13) toward high school students with IDD who were enrolled in a school-to-work transition program housed on campus. Using thematic analysis across four different data sources, we identified three main themes that peer mentors discussed based on their experiences in the program: (a) mentors’ personal development: constructing meaning of self, (b) mentee growth: perceived work and social impact, and (c) campus community benefits: normalizing disability. Peer mentors reported their own attitudes toward individuals with IDD were changed based on participating in the peer mentoring program and they observed improvements in their mentees’ personal and work-related social relationships. We discuss how these outcomes have impacted the peer mentors’ attitudes, career choices, and lives in general. We also provide implications for future research and practice regarding development and implementation of peer mentoring programs in the community.

Lessons Learned From Our Elders: How to Study Polypharmacy in Populations With Intellectual and Developmental Disabilities

2014 ◽  
Vol 52 (1) ◽  
pp. 60-77 ◽  
Author(s):  
Jessica N. Stortz ◽  
Johanna K. Lake ◽  
Virginie Cobigo ◽  
Hélène M. J. Ouellette-Kuntz ◽  
Yona Lunsky
Keyword(s):  
Developmental Disabilities ◽  
The Elderly ◽  
Population Based ◽  
Lessons Learned ◽  
Future Research ◽  
Intellectual And Developmental Disabilities ◽  
Sampling Strategies ◽  
Negative Consequences ◽  
Concurrent Use ◽  
Associated Variables

Abstract Polypharmacy is the concurrent use of multiple medications, including both psychotropic and non-psychotropic drugs. Although it may sometimes be clinically indicated, polypharmacy can have a number of negative consequences, including medication nonadherence, adverse drug reactions, and undesirable drug–drug interactions. The objective of this paper was to gain a better understanding of how to study polypharmacy among people with intellectual and developmental disabilities (IDD). To do this, we reviewed literature on polypharmacy among the elderly and people with IDD to inform future research approaches and methods on polypharmacy in people with IDD. Results identified significant variability in methods used to study polypharmacy, including definitions of polypharmacy, samples studied, analytic strategies, and variables included in the analyses. Four valuable methodological lessons to strengthen future polypharmacy research in individuals with IDD emerged. These included the use of consistent definitions of polypharmacy, the implementation of population-based sampling strategies, the development of clinical guidelines, and the importance of studying associated variables.

Impact of Medicaid Managed Care on Illinois's Acute Health Services Expenditures for Adults With Intellectual and Developmental Disabilities

2018 ◽  
Vol 56 (2) ◽  
pp. 133-146 ◽  
Author(s):  
Kiyoshi Yamaki ◽  
Coady Wing ◽  
Dale Mitchell ◽  
Randall Owen ◽  
Tamar Heller
Keyword(s):  
Developmental Disabilities ◽  
Managed Care ◽  
Health Services ◽  
Cost Savings ◽  
Intellectual And Developmental Disabilities ◽  
Fee For Service ◽  
Access To Health Services ◽  
Medicaid Managed Care ◽  
The Difference ◽  
The Impact

Abstract States have increasingly transitioned Medicaid enrollees with disabilities from fee-for-service (FFS) to Medicaid Managed Care (MMC), intending to reduce state Medicaid spending and to provide better access to health services. Yet, previous studies on the impact of MMC are limited and findings are inconsistent. We analyzed the impact of MMC on costs by tracking Illinois's Medicaid acute health services expenditures for adults with intellectual and developmental disabilities (IDD) living in the community (n = 1,216) before and after their transition to MMC. Results of the difference-in-differences (DID) regression analysis using an inverse propensity score weight (IPW) matched comparison group (n = 1,134) design suggest that there were no significant state Medicaid cost savings in transitioning people with IDD from FFS to MMC.

Case Management Workforce Supporting People With Intellectual and Developmental Disabilities: Indications of a New Frontier of the Workforce Crisis

2019 ◽  
Vol 57 (6) ◽  
pp. 499-511
Author(s):  
Matthew D. Bogenschutz ◽  
Parthenia A. Dinora ◽  
Khalilah R. Johnson
Keyword(s):  
Mixed Methods ◽  
Developmental Disabilities ◽  
Case Management ◽  
Online Survey ◽  
Regulatory Compliance ◽  
Intellectual And Developmental Disabilities ◽  
Mixed Methods Approach ◽  
Optimal Outcomes ◽  
New Frontier ◽  
Semistructured Interviews

Abstract Case management (CM) is one of the most commonly used services by individuals with intellectual and developmental disabilities (IDD), but little is known about the workers who provide CM. This study used a mixed methods approach to gain understanding of the CM workforce in one U.S. state. An online survey was completed by 35 IDD service directors (87.5% of directors in the state); and 113 CMs and CM supervisors participated in semistructured interviews and focus groups. Results indicated an annual crude separation rate of 28.2%, and participants often complained that turnover resulted in caseload sizes that prevented optimal outcomes for people with IDD. A limited applicant pool, duties focused on regulatory compliance, and inadequate wages were cited as major challenges for CMs.

The Impact of Funding on Part C Systems: Is the Tail Wagging the Dog?

2018 ◽  
Vol 40 (3) ◽  
pp. 229-245 ◽  
Author(s):  
Cynthia O. Vail ◽  
Rebecca G. Lieberman-Betz ◽  
Laura S. McCorkle
Keyword(s):  
Online Survey ◽  
National Level ◽  
Quality Of Services ◽  
Children And Families ◽  
C Programs ◽  
Part C ◽  
Perceived Impact ◽  
Provider Shortages ◽  
The Impact

The purpose of this study was to examine the characteristics of Part C programs and how funding has impacted the quality of services for children and families given ongoing budgetary concerns. Perceptions of State Early Intervention Coordinators (EICs) regarding their state Part C systems were obtained through an online survey. Using survey research methods to collect and analyze data, two primary questions were addressed in the current study: (a) What are the general characteristics of Part C programs that may be related to fiscal issues? and (b) What is the perceived impact of funding on the quality of services for children and families? A majority of respondents indicated their state program implements a primary service provider model, relies heavily on medical funding streams such as Medicaid, and is experiencing provider shortages. In addition, respondents commented on quality, trends, and funding of their state Part C programs. The findings of this study provide insight about the general characteristics of Part C programs, along with the perceived impact of funding on Part C services at the national level for policy makers, administrators, professionals, and families.

From the DSP Perspective: Exploring the Use of Practices That Align With Trauma-Informed Care in Organizations Serving People With Intellectual and Developmental Disabilities

2020 ◽  
Vol 58 (3) ◽  
pp. 208-220
Author(s):  
John M. Keesler
Keyword(s):  
Organizational Culture ◽  
Developmental Disabilities ◽  
Online Survey ◽  
Intellectual And Developmental Disabilities ◽  
Organizational Practices ◽  
Trauma Informed Care ◽  
Trauma Informed ◽  
Current Practices

Abstract Trauma-informed care (TIC) is a systemwide approach that emphasizes organizational practices based upon principles of safety, choice, collaboration, empowerment, and trustworthiness. It is intended to influence an entire organization, with implications for clients and the workforce. The present study explored the extent to which IDD organizations utilize practices that align with TIC with their DSP workforce. Through an online survey, 380 DSPs (84% women; 82% white) responded to a trauma-informed organizational culture measure. Results demonstrated variability across items and significant differences between TIC principles with safety most strongly scored, and collaboration least strongly scored. Perception of organizational practices differed by ethnicity, with non-white DSPs having more favorable responses. Current practices with DSPs align with TIC, however, increased attention through explicit trauma-informed initiatives is warranted.

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