Intellectual and Developmental Disabilities

Persons with profound intellectual and multiple disabilities (PIMD) have pervasive support needs, which are often managed by their families. By being resilient and positively adapting to this challenge, families may maintain a positive family quality of life (FQOL). We therefore aimed to understand how families with a child with PIMD experience their family resilience, and if and how it affects their FQOL. Participants were 64 parents of a person with PIMD from 44 families. Total family resilience, as well as most subscales received positive scores, and also had a significant positive effect on FQOL...

Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs are interdisciplinary, graduate-level training programs that seek to promote improved outcomes for individuals with disabilities and their families. Many of these programs include individuals with disabilities as members of the self-advocacy discipline. In this study, 10 self-advocate trainees were interviewed to provide insight into the value of including self-advocates in training and the kinds of accommodations and supports that facilitated their success and inclusion...

While there are many benefits to healthy nutrition, adults with intellectual disability often have poor nutrition habits. The purpose of this pilot study was to examine the use of a nutrition app and self-management intervention to increase awareness of healthy nutrition choices for adults with intellectual disability. Data was gathered on the effectiveness of the intervention and social validity of intervention components. Through a single-case multiple-baseline across participants design, the mobile nutrition app with self-management intervention was effective in increasing awareness of healthier nutrition items for three adults with an intellectual disability...

The impact of long-term services and supports on the quality of life of adults with intellectual and developmental disabilities (IDD) is not well understood given the highly complex nature of researching this topic. To support future research addressing this topic, we conducted a systematic literature review of studies addressing outcomes of adults with IDD receiving long-term services and supports. Results of this review describe current outcomes for adults with IDD who receive long-term services and supports and can be used to inform program evaluation, policy development, and future research...

The Chinese government initiated a pilot program to implement supported employment for people with disabilities in 2014. Since then, policies have been enacted to promote supported employment. This study explored how practitioners understand and implement supported employment for people with disabilities in China. It was found that non-governmental service organizations have mainly implemented supported employment with financial support provided by local disabled persons' federations; without a governmental guide, the small-scale folk practice presented many difficulties and unstable factors...

The purpose of this study was to examine the social validity of five different evidence-based and emerging pathways to employment (i.e., supported employment, customized employment, internships, apprenticeships, and postsecondary education) from the perspective of multiple stakeholders. A Delphi method was used to determine whether stakeholders are in consensus regarding the accessibility, affordability, acceptability, efficacy, and the cost-benefit ratio of these interventions. Findings indicated that all pathways were deemed socially valid via stakeholder consensus except for apprenticeships, which could not be determined as a result of limited stakeholder knowledge and experience with the pathway...

The New York State Office for People With Developmental Disabilities seeks to better understand the direct support professional (DSP) workforce and offer data-informed strategies for DSP retention. We used the 2018 NCI-IDD Staff Stability Survey (now called State of the Workforce Survey) to investigate agency-level factors influencing DSP tenure. A total 303 provider agencies completed the survey in New York State, representing 72,252 DSPs. Multiple linear regression analysis revealed that selected agency-level variables explained 12...

This study investigated the effects of behavioral skills training (BST) in teaching earthquake preparedness skills to students with developmental disabilities within a small group arrangement. A multiple probe design across behaviors and replicated across participants evaluated the effectiveness of BST when teaching three high school students to prepare an earthquake emergency kit, do drop-cover-hold, and share location through a personal safety app. All students acquired, maintained, and generalized the target behaviors...

Under the Individuals With Disabilities Education Act, individualized education program (IEP) annual goals are required to enable students with disabilities to be involved in and make progress in the general education curriculum and to address other educational needs. This study reports findings from a content analysis of the annual goals in 88 IEPs for K-12 students with extensive support needs. Results reflect a lack of comprehensive academic content goals to promote involvement and progress in the general education curriculum, and limited opportunities for students to develop skills associated with self-determination...

The participation of students with significant cognitive disabilities in accountability assessments aligned with general education standards is a heavily debated topic in the field of special education. Attempts to understand the impact of these assessments have generally been limited to correlational methods. We employed a difference-in-differences approach using select waves of the National Longitudinal Transition Study-2 dataset to estimate the impact of alternate assessment policies from the No Child Left Behind Act of 2001 on the employment outcomes of individuals with significant cognitive disabilities...

The American Association on Intellectual and Developmental Disabilities (AAIDD) and The Arc of the United States (The Arc) have a long history of taking jointly held positions on matters of public policy that affect people with intellectual and developmental disabilities (IDD). This article describes the methods used to develop and evaluate the understandability and fidelity of written plain language summaries of the organizations' joint position statements for an audience of people with IDD who read. Implications for adapting source material for nonreading audiences are discussed...

Direct support professionals (DSPs) are at increased risk of contracting COVID-19. A four-wave survey series was conducted, in part, to understand DSPs' COVID-19 vaccination experiences. Fourth wave data were used to compare those vaccinated against COVID-19 when they became eligible (early adopters) and those waiting at least three months before vaccination (in-betweeners). Findings indicated that in-betweeners were more likely to be female, younger, and people of color with lower education levels and annual incomes, with employers requiring COVID-19 vaccination to remain employed...

Implementing supported and customized employment in all their components is essential for supporting job seekers with disabilities to achieve their career goals. We asked 42 employment consultants in nine employment programs to respond daily to three quick questions about their employment support activities, for 6 months. Through monthly coaching, we helped the managers of these organizations engage their teams of employment consultants to interpret the data, reflect, set goals, and take action for quality improvement...

Participation in work during school is a known predictor of postsecondary employment for transition-age youth with intellectual and developmental disabilities (IDD). Recent research has demonstrated the benefits of work on skill development in major life domains. The purpose of this study was to examine the impact of customized employment on the support needs of youth with IDD with a significant disability compared to those receiving treatment as usual. Findings indicated significant increases in independence in three specific domains for the treatment group versus control on the Supports Intensity Scale-Adult Version, including Home Living, Employment, and Protection and Advocacy...

This study is among the first pre-post examinations to explore differences in subjective well-being, adaptive and maladaptive behavior, close relationships, community integration, family members' satisfaction with residential and community living settings, and family contact before and after the COVID-19 outbreak. Participants demonstrated better life satisfaction and adaptive behavior before COVID-19 than after COVID-19. Participants reported closer relationships with family members and peers before COVID-19 and closer relationships with staff members after COVID-19...

No abstract text is available yet for this article.

The COVID-19 pandemic necessitated rapid policy changes to address new demands on disability service systems. A statewide survey of families of people who received Medicaid funded home- and community-based (HCBS) long-term services and supports (LTSS) in one Midwestern state was conducted to understand (1) utilization of services allowed under the policy change, (2) family's experiences if their family member with a disability accessed the services, and (3) family's perspectives on the need for ongoing changes in the future...

This study addresses the need to reinforce the reading learning of students with intellectual and developmental disabilities (IDD) in general education classrooms. A standardized way of assessing support needs in reading (SNr) from the teachers' perspective is proposed. The objectives were (i) to develop an instrument and evaluate its properties and (ii) to preliminarily assess the support needs in reading of students with IDD. Participants were 86 Chilean elementary school teachers who responded about the support needs of their own students...

Systems navigation can be difficult, especially for low-resourced families (i.e., families who are "low income" or meet one of the following indicators: mother has a high school diploma or less; primary caregiver is unemployed; or the family receives governmental assistance). Navigators may help families access services; however, the training of navigators is unclear. The purpose of this study was to determine the effectiveness and feasibility of Supporting Parents to Access and Navigate Services (SPANS), a program to develop navigators...

Through focus groups, adults with intellectual and developmental disabilities (IDD) provided their priorities for health equity data, surveys, and information dissemination by U.S. federal agencies. Participants reported privacy concerns about sharing information, need for better data to promote access to quality health care and services, and need for information on social contexts that influence quality of life. Data should include functional limitations, health risks, and priorities for health care, and should support choice and self-determination...