Motivation in caregiving among mothers of children with intellectual and developmental disabilities in Iran: A qualitative study.

BACKGROUND: The motivation of caregivers plays a crucial role in the treatment, follow-up, and care of children with intellectual and developmental disabilities. Previous studies have focused on the older people and end-stage diseases, while giving less attention to the motivation of mothers caring for children with special needs. This study aimed to explore the motivations of mothers caring for children with intellectual and developmental disabilities in Iran. METHODS: This study employed a qualitative approach, guided by the Self-Determination Theory. Purposeful sampling was initially used, followed by theoretical sampling until data saturation was achieved. Data were collected through semi-structured interviews with 26 mothers of children with intellectual and developmental disabilities. Mayring's seven-step directed content analysis approach was utilized for coding and categorization. The research adhered to ethical standards and ensured data trustworthiness through credibility, dependability, confirmability, and transferability measures. RESULTS: The findings revealed that mothers' caregiving motivations could be classified into four main categories: (I) intrinsic, (II) identified-extrinsic, (III) introjected-extrinsic, and (IV) external-extrinsic. Additionally, twelve sub-categories were identified within these four main categories. CONCLUSION: The findings revealed that mothers demonstrated varying levels of intrinsic and extrinsic motivations in caring for children with intellectual and developmental disabilities. By recognizing and enhancing the diverse sources of motivation, healthcare providers and policymakers can better support mothers in their caregiving roles, ultimately contributing to improved outcomes for both the mothers and their children.

Development of a sexual consent intervention for adolescents with intellectual and developmental disabilities.

BACKGROUND: Tailored sexuality education for adolescents with intellectual and developmental disabilities is a crucial, yet unmet, need as this population is particularly at risk for sexual abuse and victimisation. However, there are no evidence-based interventions to specifically address this need. This paper presents the development of an intervention framework to address equity in sexuality education and support adolescents with intellectual and developmental disabilities to understand and provide sexual consent, a foundational aspect of sexuality education and sexual health. METHODS: The Sexual Health Equity Project team used a Community-Based Participatory Research approach to develop a four-module sexual consent intervention for adolescents with intellectual and developmental disabilities. We leveraged a diverse, interdisciplinary team in a suburban Midwestern school district, and used Backward Design to create objectives and assessments which were rooted in findings from qualitative data by special education teachers. RESULTS: The resulting sexual consent intervention, Ask Me First-Choices, is comprised of four modules covering topics including definition of sexual consent; decision-making strategies and practice; communicating consent and refusal, identifying situations of consent and non-consent; and legal issues surrounding consent. Each module is divided into five components for content delivery: (1) introduction, (2) lecture, (3) supplemental activity, (4) assessment, and (5) conclusion. We detail the intervention's unique aspects, emphasising areas where we used Universal Design for Learning principles to support teachers' instruction and students' learning. CONCLUSION: Our efforts to create a sexual consent intervention directly address sexuality education equity issues. We offer commentary on our design process and decisions, as well as recommendations for future groups who want to develop sexual health interventions in similar contexts for students with intellectual and developmental disabilities. Next steps include further testing and validation of the sexual consent intervention to build the evidence-base of sexuality education for adolescents with intellectual and developmental disabilities.

Mental and Behavioral Health, and Crisis Services for People with Intellectual and Developmental Disabilities in Medicaid Home- and Community-Based Services.

People with intellectual and developmental disabilities (IDD) often have higher rates of comorbid mental health conditions compared to the general population. Yet, many people with IDD also have unmet needs for mental and behavioral health services. The aim of this study was to examine how states provided mental and behavior health, and crisis services to people with IDD in their Home- and Community-Based Services (HCBS) programs, the largest funding mechanism for Long-Term Services and Supports (LTSS) for people with IDD in the United States. We analyzed fiscal year (2021) Medicaid HCBS waivers for people with IDD from across the United States to examine if and how they provided mental and behavior health, and crisis services. States projected spending $968.9 million for mental and behavior health, and crisis services for 190,299 people with IDD. Applied behavior analysis services were provided at greater rates than positive behavior supports and other forms of behavior interventions. While most states provided mental and behavior health, and crisis services in their waivers, there were vast inconsistencies in how they did so, across states, waivers, and services. HCBS are a crucial safety net to ensure people with IDD, especially those who also have mental health disabilities, can live and thrive in their communities.

Self-Determination Research: Current and Future Directions.

This article summarizes the history, current status, and future directions of self-determination research across the globe, with a focus on applications to the education of students with intellectual and developmental disabilities and their transition from school to adult life. Research on the development, implementation, and outcomes of self-determination assessments and interventions is explored. Causal Agency Theory, a theoretical framework for understanding the development of self-determination as a psychological construct, is reviewed, along with research on the importance of self-determination for inclusion, psychological growth, and overall well-being. Specific approaches, models, and perspectives for addressing the support needs of students with intellectual and developmental disabilities, particularly during transitions, are discussed. Assessment and intervention aligned with Causal Agency Theory, including the Self-Determination Inventory and the Self-Determined Learning Model of Instruction, are introduced. Future directions and emerging areas of research are summarized, including issues related to cultural validity, integration of strengths-based approaches, emerging technologies, and systemic changes in schools and communities.

Reflections on How What We Say, Do, and Acknowledge as Intellectual and Developmental Disability Researchers Matters.

This article highlights reflections by the author on the importance of considering what we say, do and acknowledge in intellectual and developmental disability research. The goal is to advance thinking that can lead to personal and collective change in our approaches to truly share power and elevate the expertise of people with lived experience with intellectual and developmental disabilities in the movement for equity, inclusion, and disability justice. Implications for inclusive research, policy, and practice are discussed as is the need to engage in personal reflection and build new partnerships for collective change.

College Students With Intellectual and Developmental Disabilities' Experiences, Conception, and Development of Emotional Wellness.

This study aimed to understand the ways in which college students with intellectual and developmental disabilities (IDD) experience and develop their understanding of emotions and emotional wellness. Semi-structured interviews with college students with IDD were conducted. The research team utilized consensual qualitative research (CQR) to analyze interviews and came to consensus in generating domains, core ideas, and a cross-analysis to answer the research question, "What are the experiences of college students with IDD in developing an understanding of emotions and emotional wellness?" Findings suggest college students with IDD have experience developing and maintaining their emotional wellness, though they may experience barriers prior to and during college enrollment. Limitations and implications for future research are discussed.

Virtual Community Conversations as Catalysts for Improving Transitions for Youth With Intellectual and Developmental Disabilities.

Youth with intellectual and developmental disabilities (IDD) aspire to participate in a variety of activities after high school, such as attaining paid employment, enrolling in postsecondary education, being involved in their communities, living independently, and building friendships. However, complex and longstanding transition barriers require comprehensive solutions that are tailored to a local community's unique needs and available resources so that local youth with IDD may achieve their desired outcomes. This article presents "virtual community conversations" as a promising approach for bringing together local communities to tackle barriers to good outcomes for residents with IDD. Attendees were able to effectively generate innovative recommendations for addressing issues in their local communities. We offer recommendations for enhancing and extending implementation of this approach.

Prevalence of dental caries among children and adolescents with intellectual disability in India: A scoping review.

BACKGROUND: Children with intellectual and developmental disabilities are at a higher risk of developing dental caries. Few scoping reviews have been conducted in India to understand their issues. We aimed to summarise the distribution and risk factors of dental caries among children and adolescents with intellectual disabilities in India. METHODS: A scoping review was conducted based on the Arksey O Malley framework. Quality assessment of studies, descriptive and thematic analyses were also conducted. RESULTS: We charted, collated, and summarised from four databases. Thirty-one studies met the study criteria consisting of children and adolescents with intellectual disabilities. Median caries prevalence was 70%, decayed missing and fIlled permenant teeth (DMFT) was 2.4, decayed missing and filled decidous teeth (dmft) was 2.36, and DMFS was 3.7. Major determinants were the severity of disability, socioeconomic status and parents' education. Oral care and dental visits were inadequate. CONCLUSION: Further exploration is required to improve access and reduce caries experience and prevalence among children with intellectual and developmental disabilities in India.

Infant Feeding Support for Pregnant and Postpartum Parents With Intellectual and Developmental Disabilities: Perspectives of WIC Staff.

OBJECTIVE: To describe the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) staff experiences, perceptions, and training needs surrounding the provision of infant feeding support for parents with intellectual and developmental disabilities (IDD). METHODS: We conducted in-depth semistructured interviews between October and November 2021 with Maryland WIC staff (N = 10) who provide infant feeding counseling and support. We analyzed interviews using conventional content analysis. RESULTS: Three themes were identified: identifying and documenting IDD, facilitating effective communication and infant feeding education, and assessing WIC staff competence and readiness. CONCLUSIONS AND IMPLICATIONS: The interviews suggested the need to explore the risks and benefits of routine and compassionate processes for identifying and documenting disability, create accessible teaching materials that facilitate understanding and engagement, and educate and train staff to provide tailored support in WIC. Engaging parents with IDD to better understand their perspectives and experiences should guide future efforts to improve inclusivity and accessibility.

Understanding Natural Supports in Diverse Adults With Intellectual and Developmental Disabilities Across Life Domains.

Although natural supports benefit individuals with intellectual and developmental disabilities (IDD), little is known about natural support provided within specific life domains or how race/ethnicity or support from professionals impacts the extent of natural support one receives. In this study, 518 parents of adults with IDD responded to a national survey about natural supports, including who provides support, the number of supporters, and variables that predict natural supports. Family most often provided support, although professionals and family friends were frequent supporters in several domains. Natural support was most extensive in health, least extensive in employment and housing. Individuals with IDD who regularly participated in daytime activities and/or identified as Black had more extensive natural support. Implications are discussed.

Criminal Justice and People With Intellectual and Developmental Disabilities.

People with intellectual and developmental disabilities (IDD) are overrepresented in the criminal justice system both as victims/survivors and as offenders. The needs and circumstances of individuals from underserved communities have received scant attention in the literature. Stakeholders met online at the 2022 State of the Science Conference on Community Living to discuss criminal justice and to identify goals for research involving people with IDD. The group focused more on victimization and less on offenders. Victimization issues examined included prevalence, people from underserved communities, sexual victimization, consequences of victimization, victim compensation, prevention, and risk reduction. Issues regarding offenders included prevalence, people from underserved communities, and competency to stand trial. Future directions are proposed for research on victimization and on offenders.

Housing and Long-Term Services and Supports for People With Intellectual or Developmental Disabilities From Racially and Culturally Minoritized Communities.

This article describes research on the places people with intellectual and developmental disabilities (IDD) live and disparities in housing and long-term services and supports (LTSS) outcomes for people with IDD from racially and culturally minoritized groups. It also summarizes the conclusions and recommendations of the Housing and Long-Term Services and Supports strand of the 2022 State of the Science Conference on the Intersection of Diversity, Equity and Inclusion and Supports and Services for People with IDD, identifies limitations of the available research and recommends strategies to improve research, knowledge translation, and practices.

An Equity-Based Research Agenda to Promote Social Inclusion and Belonging for People With IDD.

Having a sense of social inclusion and belonging, typically characterized by our personal relationships and community participation, is the central essence of life for most people, yet it remains elusive for many people with intellectual and developmental disabilities (IDD). This article summarizes the work of a diverse group of researchers and advocates to propose 6 big-picture, equity-based goals to drive future research in the field: (1) understanding the role of intersectionality, (2) understanding intimate relationships, (3) promoting formation of communities of care to support social inclusion, (4) understanding life course trajectories of social inclusion, (5) understanding social inclusion in virtual spaces, and (6) understanding how to promote social inclusion in the entire research process.

From a concept to a theory: The six eras of quality of life research and application.

This article describes the evolution of the quality of life concept through the lens of six distinct eras. Each era reflects a shared process in which multiple stakeholders, including persons with intellectual and developmental disabilities and researchers, have played a significant role. Across these six eras, research on quality of life has evolved from operationalizing a concept to developing a theory. As described in the article, the first three eras resulted in formulating conceptualization, measurement, and application principles; developing quality of life conceptual and operational models; and constructing reliable and valid instruments to assess quality of life domains or domain-referenced indicators. The application era has focused on applying the concept of quality of life and its measurement, supports provision, conceptualization and theory, and systemic change. The final two eras have involved theory development and theory confirmation.

The design and methodology for a pilot study of home and community-based services outcome measures.

BACKGROUND: The Research and Training Center on HCBS Outcome Measurement (RTC/OM) developed and piloted measures in six domains to assess the outcomes experienced by HCBS recipients. These measures were based upon the revised National Quality Forum's HCBS Outcome Measurement framework. OBJECTIVE: The background and rationale for the pilot study are outlined along with the research design, sampling frame, and psychometric and statistical methods used. In addition, administration feasibility for all measures are described. Finally, a summary of results across all measures is provided. Detailed results for individual outcome measure domains are left to forthcoming publications. METHODS: Measure construct under study were piloted on a sample of 107 participants identified as receiving HCBS or HCBS-like services and experiencing one of five disabilities: intellectual and developmental, age-related, or physical disabilities as well as Traumatic/Acquired Brain Injury and Serious Mental Health Conditions. Participants were interviewed either in-person or through HIPAA compliant online video conferencing over one to two sessions. Psychometric evidence was evaluated with internal consistency and test-retest reliability, as well as inter-observer agreement. Nonparametric methods were used to test for group comparisons. RESULTS: Initial reliability and validity results of outcomes on five measures were good to excellent. No significant group differences between disability groups were found. CONCLUSIONS: The psychometric evidence for the tested measures is very promising. Only two of the six measures required significant changes prior to their use in an upcoming field study. Details on results and revisions for individual measures will appear in later publications.

Leadership academy for excellence in disability services: evaluation of outcomes for state employees.

As the United States' first disability-specific leadership academy in state government, the Leadership Academy for Excellence in Disability Services is a year-long competency-based training experience designed for employees who manage programs that impact the lives of Tennesseans with intellectual and developmental disabilities and their families. The Tennessee Department of Human Resources, in collaboration with the Tennessee Council on Developmental Disabilities, began implementing this program in 2017. The lasting impact of such a training experience on the practices of state employees once they complete the program is not known; this was the aim of the study. A follow-up survey examining graduate perceptions and outcomes was sent to 71 graduates; 48 completed the measure. The results reveal an increase in knowledge of disability service systems and a perceived ability to lead and advocate for others. Leadership competencies deemed most important to graduates' current efforts in state government included developing direct reports, managing diversity, organizational agility, and innovation management. Graduates' written comments cited the variety of subject matter experts, networking opportunities, and small group projects as fundamental in breaking down barriers to cross-agency collaboration in their disability work. The impact of this experience continues to be seen years after completing the leadership academy.

The State of Employment for People With IDD: Implications for Practice, Policy, and Equity.

Meaningful progress in improving employment outcomes for people with intellectual and developmental disabilities continues to be elusive, despite 40 years of investment in research, policy, and supports. This article reviews the current state of employment for individuals with intellectual and developmental disabilities (IDD) and describes policy, practice, and individual factors that influence employment outcomes. Research suggests the need for a holistic approach to change that addresses systems-level strategy, policy, and fiscal investment while strengthening individual experiences with employment and related day services. Recommendations address strengthening the implementation of employment policy, developing pathways to employment, and engaging individuals with IDD and, in particular, individuals with diverse social characteristics in reflecting on the quality of their experiences and supports.

A Research Agenda to Support Families of People With Intellectual and Developmental Disabilities With Intersectional Identities.

Family members provide significant practical and emotional support to people with intellectual and developmental disabilities (IDD) across the lifespan. In September 2022, the State of the Science Conference on Community Living: Engaging Persons With Intellectual and Developmental Disabilities From Underserved Racial, Ethnic, Linguistic, and Cultural Groups in Research was held. This article summarizes the efforts of the workgroup that developed research goals related to supporting families of people with IDD. The focus was on families with intersectional identities and minoritized communities. Recommended areas of future research include exploratory research to better understand the experiences of these families, perspectives of families with intersectional identities about the formal support system, funding for family support and services, and inclusive research strategies.

Barriers to Mental Health Care Transition for Youth and Young Adults with Intellectual and Developmental Disabilities and Co-occurring Mental Health Conditions: Stakeholders' Perspectives.

Youth and young adults (YYA) with intellectual and developmental disabilities (IDD) have high rates of co-occurring mental health (MH) conditions. The time during transition from pediatric to adult health and mental health care can be a very challenging, with risk of loss of services leading to poor outcomes. This study aimed to explore barriers to transition from pediatric to adult health and mental health care and services for individuals with IDD and co-occurring MH conditions, by eliciting the view of stakeholders, including disability advocates. Qualitative analysis was conducted using grounded theory, and themes were coded based upon the social-ecological model (SEM). We generated themes into multiple levels: the individual level, the family level, the provider level, the systems of care level, and the societal level. Stakeholders expressed a critical need to improve coordination between systems, and to increase provider availability to care for YYA with IDD and co-occurring MH conditions.