Health outcomes for children with intellectual and developmental disabilities (IDD) are consistently worse than for children without IDDs. Recent estimates suggest that between 2-3% of US children have IDDs and in low- and middle-income countries, the prevalence may be even higher. In addition to experiencing poorer health outcomes, children with IDDs experience social isolation, greater family stressors and stigma, and education barriers. These challenges are likely even more extensive for children with IDD from underserved groups (rural and inner-city children, racial and ethnic minorities, etc.). Though the needs of children with IDDs are often unique and complex, care teams serving children with IDD largely work in isolation from one another (e.g., education vs. health services).
The goal of this Research Topic is to report on work from interdisciplinary teams that use novel approaches to define, measure, intervene, and track outcomes across systems of care for the purpose of improving the well-being of children with IDD, and their families. “Interdisciplinary” is broadly defined and includes collaborative, family-centered approaches leveraging multiple systems. Therefore, this collection encompasses inter-disciplinary approaches, family-professional partnerships, and any approach addressing barriers in complex systems of care. Moreover, this Research Topic seeks to address methods to improve outcomes for the most underserved populations, including those from rural or inner-city communities, diverse racial and ethnic backgrounds, refugee communities, or other populations experiencing disparities due to their demographic background.
Themes this Research Topic is looking to consider include, but are not limited to:
• Improving outcomes for children with IDD and their families through multi-systems or inter-disciplinary approaches.
• Viewpoints from the community or fields beyond traditional allied health fields.
• Manuscripts focusing on underserved groups (rural, diverse racial and ethnic groups, inner city, refugee communities, etc.).
• Innovative approaches leveraging multiple systems to improve outcomes, e.g., collaborative/interdisciplinary work that addresses interactions between healthcare, allied health, education, rehabilitation, early intervention, behavioral intervention, or other systems that support children with IDDs.
• Investigations of current or past legal, policy, or financial systemic interventions (e.g., Race to the Top Early Childhood Integrated Data Systems) hypothesized to facilitate between-system tracking of outcomes for children and families with IDD.
• Family-centered approaches and end-users’ perspectives, through utilizing community-based participatory research (CBPR) methods or other strategies to include all stakeholders.
• Historical context of federal, state, or local philosophical, philanthropic, political, or ideologically-based policy decisions that impact between system collaborations (e.g., Reagan-era extensions of early intervention building on Ford-era special education).
• Explorations into the role of parents and legal advocacy organizations in assuring children with disabilities receive inclusive and effective interventions.
Article types that will be considered for this collection: Brief Research Report, Case Report, Clinical Trial, Community Case Study, Data Report, General Commentary, Hypothesis & Theory, Methods, Mini Review, Opinion, Original Research, Perspective, Policy Brief, Policy and Practice Reviews, Review, Systematic Review.
Health outcomes for children with intellectual and developmental disabilities (IDD) are consistently worse than for children without IDDs. Recent estimates suggest that between 2-3% of US children have IDDs and in low- and middle-income countries, the prevalence may be even higher. In addition to experiencing poorer health outcomes, children with IDDs experience social isolation, greater family stressors and stigma, and education barriers. These challenges are likely even more extensive for children with IDD from underserved groups (rural and inner-city children, racial and ethnic minorities, etc.). Though the needs of children with IDDs are often unique and complex, care teams serving children with IDD largely work in isolation from one another (e.g., education vs. health services).
The goal of this Research Topic is to report on work from interdisciplinary teams that use novel approaches to define, measure, intervene, and track outcomes across systems of care for the purpose of improving the well-being of children with IDD, and their families. “Interdisciplinary” is broadly defined and includes collaborative, family-centered approaches leveraging multiple systems. Therefore, this collection encompasses inter-disciplinary approaches, family-professional partnerships, and any approach addressing barriers in complex systems of care. Moreover, this Research Topic seeks to address methods to improve outcomes for the most underserved populations, including those from rural or inner-city communities, diverse racial and ethnic backgrounds, refugee communities, or other populations experiencing disparities due to their demographic background.
Themes this Research Topic is looking to consider include, but are not limited to:
• Improving outcomes for children with IDD and their families through multi-systems or inter-disciplinary approaches.
• Viewpoints from the community or fields beyond traditional allied health fields.
• Manuscripts focusing on underserved groups (rural, diverse racial and ethnic groups, inner city, refugee communities, etc.).
• Innovative approaches leveraging multiple systems to improve outcomes, e.g., collaborative/interdisciplinary work that addresses interactions between healthcare, allied health, education, rehabilitation, early intervention, behavioral intervention, or other systems that support children with IDDs.
• Investigations of current or past legal, policy, or financial systemic interventions (e.g., Race to the Top Early Childhood Integrated Data Systems) hypothesized to facilitate between-system tracking of outcomes for children and families with IDD.
• Family-centered approaches and end-users’ perspectives, through utilizing community-based participatory research (CBPR) methods or other strategies to include all stakeholders.
• Historical context of federal, state, or local philosophical, philanthropic, political, or ideologically-based policy decisions that impact between system collaborations (e.g., Reagan-era extensions of early intervention building on Ford-era special education).
• Explorations into the role of parents and legal advocacy organizations in assuring children with disabilities receive inclusive and effective interventions.
Article types that will be considered for this collection: Brief Research Report, Case Report, Clinical Trial, Community Case Study, Data Report, General Commentary, Hypothesis & Theory, Methods, Mini Review, Opinion, Original Research, Perspective, Policy Brief, Policy and Practice Reviews, Review, Systematic Review.