Family-centeredness of services for young children with Down syndrome: an observational study from Turkey

Background/aim: Physicians require information on the family centeredness of services for children with Down syndrome, one of the most frequently encountered disabilities in childhood. We aimed to determine the family-centeredness of services for young children with Down syndrome and using a bioecological theory framework we hypothesized that child, family and service-related factors would be associated with such services. Materials and methods: In a crosssectional design, children with Down syndrome seen at Ankara University Developmental Pediatrics Division (AUDPD) between February 2020 and June 2020 were included if they had received services in the community for at least 12 months. Mothers responded to the measure of process of care-20 (MPOC-20) used to measure family centeredness. Results: All 65 eligible children were included; 57% were boys and median age was 25.0 (IQR: 18.5­38.0) months. The MPOC-20 subscale scores were highest for the "respectful and supportive care (RSC)" (median 6.0; IQR: 4.8­6.8) and lowest for the "providing specific information" (median 3.0; IQR: 4.4­6.5) subscales. On univariate analyses, maternal education

Impacts of early intervention on family outcomes: A multicenter cross-sectional study in Japan.

BACKGROUND: Recently, the concept of "family-centered" practice was integrated into early intervention programs in Japan. Services provided through early intervention can result in beneficial family outcomes. We previously validated the Family Outcomes Survey-Revised (FOS-R) for use in Japan, but the impact on families was not evaluated. OBJECTIVES: To evaluate potential impacts of early intervention on family outcomes and factors associated with outcome attainment. METHOD: An anonymous, self-administered questionnaire was given to mothers of pre-school-age children with disabilities who were currently receiving early intervention at one of 12 development support centers across Japan. We evaluated scores of the Japanese version of the FOS-R using multivariable random effect models. RESULTS: Data from a total of 394 mothers were analyzed. Longer duration of early intervention was positively associated with family outcomes (<12 mo vs. 12-23 mo; coefficient = 0.19, p = .02, 95% CI: 0.02, 0.36). Perceived helpfulness of early intervention was significantly associated with family outcomes (coefficient = 0.49, p < .001, 95% CI: 0.42, 0.55). CONCLUSIONS: This study suggests that early intervention is associated with better outcomes for families, especially for families who perceive early intervention as helpful.

Assessment of progress in education for children and youth with disabilities in Afghanistan: A multilevel analysis of repeated cross-sectional surveys.

Recent study shows that 617 million children and adolescents-or six out of 10 globally- are not acquiring minimum levels in literacy and mathematics, indicating the magnitude of the learning acquisition problem. For children with disabilities in context of conflict, the situation is arguably even worse: the literature shows that they face difficulties to access the education system due to multiple barriers, and when they do access, they are not learning. Our paper examines if an active education policy promoting inclusion since 2005 in Afghanistan, a protracted crisis context, has been effective. Using two cross sectional household surveys carried out eight years apart (2005-2013), our study shows that access to school and literacy did not improve between 2005 and 2013 for children and youth with disabilities. Both access and literacy outcomes were worse for girls with disabilities, those with a mental, learning or associated disability and those living in household where the head was uneducated. Finally, odds of being mentally distressed significantly declined between 2005 and 2013 indicating that schools might play a protective role for children with disabilities in Afghanistan. Our findings suggest that a multilevel multi-pronged adaptation of the existing system to improve the learning experience and promote children's resilience, particularly for children with disabilities, in conflict context such as Afghanistan, is required.

The Fallacy of Choice: the Destructive Effect of School Vouchers on Children With Disabilities.

This Article addresses the impact of school voucher programs on students with disabilities. We show that for children with disabilities, the price of admission into so-called "school choice" programs is so high that it is effectively no real choice at all. School voucher programs require students with disabilities to sign away their robust federal rights and protections in the public school system. Under the Individuals with Disabilities Education Act (IDEA)--the preeminent legislative safeguard for students with disabilities--these rights include the right to a "free and appropriate public education" delivered through an "individualized education plan." By giving up these protections, children with disabilities are left at the mercy of private schools that have no legal obligation to provide them with an appropriate education, and, in the vast majority of cases, are not legally prohibited from discriminating against them on the basis of their disability. We argue that school voucher programs--including a proposed federal voucher program--put the education of students with disabilities back decades, and likely constitute a violation of the Equal Protection Clause of the U.S. Constitution.

A Texas Two-Step in the Right Direction--Looking Beyond Recent Legislation to Improve the Provision of Special Education Services in Texas.

This article analyzes the current state of the special education system in Texas following the 85th Legislative Session, focusing on the practical and legal implications of the limitation imposed by the Texas Education Agency in 2004 before analyzing Senate Bill 160, which requires Texas to remove the limitation on special education services, and its future impact on special education in Texas. Additionally, this article addresses Senate Bill 927, which outlined a plan to ensure that students who were previously denied services receive an adequate evaluation, why the legislation failed, and potential remedies for students who have been negatively impacted by the limitation over the years. Following this discussion, policy recommendations on how to further improve the current state of special education in Texas are proposed.

Assistance to States for the Education of Children With Disabilities and Preschool Grants for Children With Disabilities Program; Early Intervention Program for Infants and Toddlers With Disabilities. Final regulations.

The Secretary of Education (Secretary) amends the regulations implementing Parts B and C of the Individuals with Disabilities Education Act (IDEA). These conforming changes are needed to implement statutory amendments made to the IDEA by the Every Student Succeeds Act (ESSA), enacted on December 10, 2015. These regulations remove and revise IDEA definitions based on changes made to the definitions in the Elementary and Secondary Education Act of 1965 (ESEA), as amended by the ESSA, and also update several State eligibility requirements to reflect amendments to the IDEA made by the ESSA. They also update relevant cross-references in the IDEA regulations to sections of the ESEA to reflect changes made by the ESSA. These regulations also include several technical corrections to previously published IDEA Part B regulations.

Impact of Participation in Community-Based Research Among Undergraduate and Graduate Students.

Participation in community-based research provides college students with a high-impact experience involving both research and service learning. Presently, the impact of participation in community-based research projects has been measured most often through the use of post-learning course evaluations and case studies. The authors describe the impact of participation in community-based research, at a small liberal arts college, on undergraduate education students and graduate physical therapy students using the Community-Based Research Student Learning Outcomes Survey. Results from 2 years of survey responses and open-ended responses suggest that participation in such an experience may impact professional and personal growth, educational experiences, and civic engagement. This study provides support for universities and colleges to continue offering high-impact learning experiences for students by utilizing community-based research experiences while collaborating between academic departments.

Discourses on discharge care for children with special healthcare needs. / Discursos sobre cuidados na alta de crianças com necessidades especiais de saúde.

OBJECTIVES:: analyze the discourse of healthcare professionals and families on the continuous and complex care for children with special healthcare needs; understand hospital discharge as a process centered on children demands and family learning. METHOD:: qualitative research conducted between 2013 and 2015 through semi-structured interviews, document analysis and the sensitive creative method; the participants were ten children with special healthcare needs, six professionals and eleven family members from a public pediatric teaching hospital in Rio de Janeiro. The data underwent critical discourse analysis. RESULTS:: at discharge, family caregivers should learn innovative care to guarantee the maintenance of their children's lives at home, but preparation is limited. CONCLUSION:: the clinicians and the families pointed out Nurse as the most qualified professional for this preparation, since caring for these children requires nursing care skills.

Discursos sobre cuidados na alta de crianças com necessidades especiais de saúde / Discursos sobre atención en el alta de infantes con necesidades especiales de salud / Discourses on discharge care for children with special healthcare needs

RESUMO Objetivos: analisar o discurso de profissionais e familiares sobre os cuidados contínuos e complexos de crianças com necessidades especiais de saúde; compreender a alta hospitalar como processo centrado nas demandas das crianças e na aprendizagem da família. Método: pesquisa qualitativa realizada entre 2013 e 2015, por meio de entrevistas semiestruturadas, análise documental e método criativo sensível; participaram dez crianças com necessidades especiais de saúde, seis profissionais, onze familiares de hospital público de ensino pediátrico do Rio de Janeiro, cujos dados foram submetidos a análise crítica de discurso. Resultados: na alta, os familiares cuidadores querem aprender o cuidado inovador para assegurar a manutenção da vida de seus filhos no domicílio, mas o preparo é pontual. Conclusão: a equipe e a família distinguem o enfermeiro como o profissional qualificado para esse preparo, uma vez que os cuidados procedimentais são cuidados de enfermagem.

RESUMEN Objetivos: analizar el discurso de profesionales y familiares sobre la atención continua y compleja de infantes con necesidades especiales de salud; comprender el alta hospitalaria como proceso enfocado en las demandas del infante y el aprendizaje de la familia. Método: investigación cualitativa realizada entre 2013 y 2015 mediante entrevistas semiestructuradas, análisis documental y método creativo sensible; participaron diez infantes con necesidades especiales de salud, seis profesionales y once familiares en hospital público de enseñanza pediátrica de Rio de Janeiro, cuyos datos fueron sometidos a análisis crítico del discurso. Resultados: en el alta, los familiares cuidadores quieren aprender cuidados innovadores para respaldar la vida de sus hijos en domicilio, pero la preparación es particular. Conclusión: el equipo y la familia distinguen al enfermero como el profesional calificado para tal preparación, toda vez que los cuidados del procedimiento consisten en atención de enfermería.

ABSTRACT Objectives: analyze the discourse of healthcare professionals and families on the continuous and complex care for children with special healthcare needs; understand hospital discharge as a process centered on children demands and family learning. Method: qualitative research conducted between 2013 and 2015 through semi-structured interviews, document analysis and the sensitive creative method; the participants were ten children with special healthcare needs, six professionals and eleven family members from a public pediatric teaching hospital in Rio de Janeiro. The data underwent critical discourse analysis. Results: at discharge, family caregivers should learn innovative care to guarantee the maintenance of their children’s lives at home, but preparation is limited. Conclusion: the clinicians and the families pointed out Nurse as the most qualified professional for this preparation, since caring for these children requires nursing care skills.

Participation in Early Childhood Educational Environments for Young Children with and Without Developmental Disabilities and Delays: A Mixed Methods Study.

AIMS: This mixed methods study examined: 1) how young children with and without developmental disabilities and delays participate in daycare or preschool activities; 2) similarities and differences in environmental factors impacting daycare or preschool participation; and 3) strategies used by parents who desired a change in their child's participation. METHODS: Data were drawn from 129 parents of young children with and without developmental disabilities and delays (mean age = 49.3 months) residing in North America. Summary and item-level group differences based on disability status were assessed for participation and environmental supports to participation. Narrative data on parental strategies were content coded, transformed into numerical counts, and summarized to identify strategies commonly employed by parents to promote their child's participation. RESULTS: Moderate to large disability related group differences in participation and environmental support to participation were found even after controlling for confounding effects of child age, child gender, and family income. Parents commonly described strategies focused on "child care tasks" and "child peer groups," irrespective of the type(s) of change they desired. CONCLUSIONS: Study findings suggest that discrepancies in school participation between young children with and without disabilities and delays can be detected and intervened on during the early childhood period.

Individualized Education Program Development Among Racially/Ethnically Diverse Children and Adolescents with Health Conditions.

Background Black, Hispanic, and low income children bear a greater burden of chronic health conditions compared to wealthier white counterparts. Under federal law, schools provide services to children when their health conditions impair learning. These school services, called individualized education programs (IEPs) can reduce disparities in school outcomes. This paper examines the extent to which children with health conditions have an IEP plan, an important first step in understanding service utilization. Method Andersen's Behavioral Model was used to examine IEP plan presence by using the 2012 National Survey of Children's Health. School aged children (6-17), with at least one health condition (N = 16,496) were examined using multivariable logistic regression analysis to understand predisposing (age, sex, race/ethnicity), enabling (family and neighborhood), and need (health related) factors as predictors of having an IEP plan. Race/ethnicity interaction terms tested for moderating effects of race/ethnicity on the relationship between predisposing, enabling and need factors and having an IEP plan. Results Hispanic children were 93.4 % (OR = .066) less likely and Black children were 87.9 % (OR = .121) less likely to have an IEP plan compared to White children. Black, Hispanic, and Multiracial children were more likely to have an IEP plan if they had more family and neighborhood resources (OR range 1.37-1.62) and greater health needs and health care needs (OR range 1.29-2.57). Conclusion The Behavioral Model was useful in predicting the presence of IEP plans among racially/ethnically diverse children with health conditions as an important step in understanding disparities in healthcare access in schools.

Assistance to States for the Education of Children With Disabilities; Preschool Grants for Children With Disabilities. Final regulations.

The Secretary amends the regulations under Part B of the Individuals with Disabilities Education Act (IDEA) governing the Assistance to States for the Education of Children with Disabilities program and the Preschool Grants for Children with Disabilities program. With the goal of promoting equity under IDEA, the regulations will establish a standard methodology States must use to determine whether significant disproportionality based on race and ethnicity is occurring in the State and in its local educational agencies (LEAs); clarify that States must address significant disproportionality in the incidence, duration, and type of disciplinary actions, including suspensions and expulsions, using the same statutory remedies required to address significant disproportionality in the identification and placement of children with disabilities; clarify requirements for the review and revision of policies, practices, and procedures when significant disproportionality is found; and require that LEAs identify and address the factors contributing to significant disproportionality as part of comprehensive coordinated early intervening services (comprehensive CEIS) and allow these services for children from age 3 through grade 12, with and without disabilities.

The Role of Online Social Support in Supporting and Educating Parents of Young Children With Special Health Care Needs in the United States: A Scoping Review.

BACKGROUND: When parents of young children with special health care needs (CSHCN) receive their child's diagnosis, they encounter information they may not understand, emotions they may not know how to cope with, and questions about their child's immediate and long-term future that frequently lack answers. The challenge of health care providers is how to prepare parents for caring for their CSHCN, for coping with any resulting challenges, and for accessing the systems and services that can assist them. OBJECTIVE: The purpose of this work was to review evidence of the information and support needs of parents of young CSHCN and to determine whether online social support can serve as an avenue for learning and empowerment for these parents. METHODS: A scoping review identified the challenges, coping mechanisms, and support needs among parents of CSHCN, and the reach and effectiveness of digital technologies with these families and health care providers. We also conducted interviews with professionals serving parents of CSHCN. RESULTS: The literature review and interviews suggested that parents best learn the information they need, and cope with the emotional challenges of raising a CSHCN, with support from other parents of CSHCN, and that young parents in recent years have most often been finding this parent-to-parent support through digital media, particularly social media, consistent with the theory of online social support. Evidence also shows that social media, particularly Facebook, is used by nearly all women aged 18-29 years across racial and socioeconomic lines in the United States. CONCLUSIONS: Parents of young CSHCN experience significant stress but gain understanding, receive support, and develop the ability to care for and be advocates for their child through parent-to-parent emotional and informational social support. Online social support is most effective with young adults of childbearing age, with social media and apps being the most useful within the theoretical framework of social support. This opens new opportunities to effectively educate and support parents of young CSHCN. Providers seeking to inform, educate, and support families of CSHCN should develop strategies to help parents find and use social support through digital resources to facilitate their emotional adjustment and practical abilities to care for and access services for their child.

The Individuals With Disabilities Education Act (IDEA) for Children With Special Educational Needs.

The pediatric health care provider has a critical role in supporting the health and well-being of children and adolescents in all settings, including early intervention (EI), preschool, and school environments. It is estimated that 15% of children in the United States have a disability. The Individuals with Disabilities Education Act entitles every affected child in the United States from infancy to young adulthood to a free appropriate public education through EI and special education services. These services bolster development and learning of children with various disabilities. This clinical report provides the pediatric health care provider with a summary of key components of the most recent version of this law. Guidance is also provided to ensure that every child in need receives the EI and special education services to which he or she is entitled.

Validity of the Special Needs Education Assessment Tool (SNEAT), a Newly Developed Scale for Children with Disabilities.

The improvement of the quality of life (QOL) of children with disabilities has been considered important. Therefore, the Special Needs Education Assessment Tool (SNEAT) was developed based on the concept of QOL to objectively evaluate the educational outcome of children with disabilities. SNEAT consists of 11 items in three domains: physical functioning, mental health, and social functioning. This study aimed to verify the reliability and construct validity of SNEAT using 93 children collected from the classes on independent activities of daily living for children with disabilities in Okinawa Prefecture between October and November 2014. Survey data were collected in a longitudinal prospective cohort study. The reliability of SNEAT was verified via the internal consistency method and the test-pretest method; both the coefficient of Cronbach's α and the intra-class correlation coefficient were over 0.7. The validity of SNEAT was also verified via one-way repeated-measures ANOVA and the latent growth curve model. The scores of all the items and domains and the total scores obtained from one-way repeated-measures ANOVA were the same as the predicted scores. SNEAT is valid based on its goodness-of-fit values obtained using the latent growth curve model, where the values of comparative fit index (0.983) and root mean square error of approximation (0.062) were within the goodness-of-fit range. These results indicate that SNEAT has high reliability and construct validity and may contribute to improve QOL of children with disabilities in the classes on independent activities of daily living for children with disabilities.

The Road to Prison is Paved with Bad Evaluations: The Case for Functional Behavioral Assessments and Behavior Intervention Plans.

In 1997, Congress amended the Individuals with Disabilities Education Act ("IDEA") to include provisions meant to assist school districts in educating students with behavioral needs. These amendments required schools to use functional behavioral assessments ("FBA") and behavior intervention plans ("BIP") under certain circumstances. Congress did not, however, include a definition of or substantive requirements for either system of behavior management. As a result, although BIPs and FBAs are now federally mandated requirements, and it is clear that disregarding behavioral issues is a denial of a free appropriate public education ("FAPE"), the IDEA's adjudicative standard, there is no clear consensus as to whether a student with behavioral needs must have an FBA or a BIP or what either must include. The IDEA's lack of guidance has resulted in inconsistent and often contradictory court rulings, and the lack of specific definitions and procedures has allowed schools to develop purportedly legal but substantively deficient behavior evaluations and intervention plans for special needs students. Despite this confusion, some courts have properly looked to the administrative record for guidance on the substantive elements of FBAs and BIPs. Deference to hearing officers, along with other provisions within the IDEA, such as Child Find and inclusion obligations, may assist courts in determining whether a school's failure to use an FBA and a BIP for a student with behavioral needs falls short of Board of Education v. Rowley's requirements for FAPE. FBAs and BIPs aim to prevent and correct student misconduct before it escalates and results in drastic disciplinary action. Given the impact punitive school discipline policies have had on students with special needs, the added procedural safeguards these proactive behavior management schemes could provide are imperative to dismantling the school-to-prison pipeline.

Understanding the impact of special health care needs on early school functioning: a conceptual model.

Children with special health care needs (SHCN) have or are at increased risk for a chronic condition that necessitates more health and related supports than their peers. While it is generally accepted that these children are at risk for school failure, the mechanisms through which SHCN impact on children's experiences (and therefore opportunities to intervene) at school are still relatively poorly understood. Based on the current literature, this paper provides a conceptual framework to guide further discussion of this issue in research, policy and practice. Evidence from the literature was reviewed and existing frameworks examined. We propose that SHCN impact on four interrelated domains of children's functioning: (1) body functions and structures; (2) activities of daily living; (3) social participation; and (4) educational participation. Children's functioning is further influenced by risk and protective factors that can be identified at the level of the child, family and service systems. Together, these processes contribute to shaping either positive or negative trajectories of school functioning. The mechanisms influencing school experiences for children with special health care needs are complex, with opportunities for positive interventions at a range of levels. The proposed conceptual model provides an accessible tool for guiding discussion of the support needs of this vulnerable population.

Transportation challenges for urban students with disabilities: parent perspectives.

This qualitative study explored parent perspectives of the transportation difficulties students with disabilities experienced getting to and around school. Participants were parents of predominantly African American and Latino/a high school youth with disabilities from low income neighborhoods. Content analysis of 14 meetings with 5 to 12 parents sponsored by the school district revealed five primary themes concerning transportation: the role of aides, exclusion from school programming, scheduling problems, equipment problems, and physical safety issues. Findings are discussed in regard to students' social and emotional experiences at school. Implications for school policy include improving the integration of transportation within inclusion best practice models. Incorporating parent perspectives can help school administrators and staff enrich the quality of inclusive, socially just education for students with disabilities.

Transportation and socioemotional well-being of urban students with and without disabilities.

This study explored the extent to which transportation difficulties were associated with social, psychological, and academic experiences of urban, at-risk students who recently experienced a school transition. Participants included 165 predominantly African American and Latino/a high school youth with and without disabilities, a critical population for community psychology to address given their likelihood of multiple marginalizations. Results suggested transportation problems within school predicted more school stressors and aggressive behavior. Transportation problems to and from school predicted fewer school resources, less school belonging, and more school stressors, anxiety, and depression. Greater time to get to school predicted fewer school resources, less school belonging, and more depressive symptoms. This study demonstrates the importance of including transportation in how the school day is conceptualized, and offers several implications for how transportation services can be best addressed.

Building statewide infrastructure for effective educational services for students with TBI: promising practices and recommendations.

OBJECTIVE: To identify promising practices in educational service delivery. METHODS: Consensus-building process with a multidisciplinary group of researchers, policy makers, and state Department of Education personnel. RESULTS: This white paper presents the group's consensus on the essential components of a statewide educational infrastructure to support students with traumatic brain injury across the spectrum of injury severity: (a) identification, screening, and assessment practices; (b) systematic communication between medical and educational systems; (c) tracking of child's progress over time; and (d) professional development for school personnel. The white paper also presents key outcomes for measuring success and provides recommendations both for policy change and for furthering research in childhood brain injury.