Special Health Care Needs Research Articles

Effects of Medicaid Automatic Enrollment on Disparities in Insurance Coverage and Caregiver Burden for Children with Special Health Care Needs.

We analyze how Medicaid automatic enrollment policies for children with special health care needs (CSHCN) who are enrolled in Supplemental Security Income (SSI) reduce disparities in health insurance coverage and caregiving burden. Using the 2009-2010 National Survey of Children with Special Health Care Needs, we implement a difference-in-differences regression model comparing insurance enrollment rates between CSHCN receiving SSI and CSHCN not receiving SSI, in states with and without automatic enrollment policies. We find that Medicaid automatic enrollment has a meaningful impact on insurance enrollment for low-income CSHCN who participate in SSI and can be an effective method for mitigating disparities in insurance coverage (reducing uninsurance by 38%). Medicaid automatic enrollment also reduces caregiver burden among socioeconomically disadvantaged families with CSHCN. The effects of these policies are largest families who might be on the margin of eligibility or who face high administrative burden.

Review of the Medical Home Portal Website: Connecting Parents and Clinicians with High Quality Information about Children and Youth with Special Health Care Needs

Nearly one fifth of children in the United States have special healthcare needs, but their pediatricians may only deal with 1–3 patients who fall into the category of rare or chronic disease. Where can they find information on treating these conditions when they do not confront them very often? And where can the families of these children find quality information to help care for them? One website that covers both of these situations is the Medical Home Portal. This review will describe the Medical Home Portal website, and discuss the purpose of the site, the site's strengths and weaknesses, and who should use this resource.

Parent Satisfaction With a Telehealth Coaching Program for Families of Children With Special Health Care Needs

Abstract Date Presented 04/01/2022 This study examined parent satisfaction and perceptions of telehealth for a parent coaching intervention for families of children with special health care needs. Parents (N = 15) completed the Telehealth Usability Questionnaire and a semistructured interview. Researchers analyzed data using descriptive and correlational statistics and thematic analyses. Findings provide informative evidence to understand for whom and how telehealth is a satisfying OT service delivery approach. Primary Author and Speaker: Sarah L. Smith Contributing Authors: Elizabeth Humphreys, Semra Aytur

Criteria for Selecting Special Health Care Needs Patients under General Anesthesia in Dental Treatment: A Systemic Review

Aims: To investigate the available evidence on how to decide whether your special health care needs patient needs GA for dental treatments or not.Study Design: Systematic review.Place and Duration of Study: Pediatric dentistry department, Riyadh Elm University, between January 2021 and May 2021. Methodology: A systematic search was conducted in four electronic databases PubMed, Google Scholar, ResearchGate and SDL. The search was restricted to articles published between 2005 and 2020. Publications reporting on the special health care needs patient’s dental treatment were included. The papers were analyzed regarding title and abstract contents to eliminate the ones that were out of context and not relevant to the review.Results: The search strategy resulted in 99 unique and potentially relevant articles. In total, 6 publications which include 5 retrospective articles and one cross-sectional study were selected.Conclusion: The main standards for selecting patients for hospitalized dental treatments include a full analysis of SNP including their medical history, behavior and emotional factors, oral health status, allergies, social and non-clinical factors, and caregivers’ factors. It is important for general dentists and families of these patients to be acquainted with the procedure, its need, and its contraindications.

Childcare and Employment Disruptions in 2020 Among Caregivers of Children With and Without Special Health Care Needs

Childcare and Employment Disruptions in 2020 Among Caregivers of Children With and Without Special Health Care Needs

Progress, Persistence, and Hope: Building a System of Services for CYSHCN and Their Families.

Progress, Persistence, and Hope: Building a System of Services for CYSHCN and Their Families.

Mental health of children with and without special healthcare needs and of their caregivers during COVID-19: a cross-sectional study

ObjectiveTo describe mental health outcomes and measures of pandemic burden of children with and without special healthcare needs, and their caregivers following the second wave of the COVID-19 pandemic in...

Health Equity for Children and Youth With Special Health Care Needs: A Vision for the Future.

Health equity is a key pillar in supporting a future in which CYSHCN enjoy a full life and thrive, as envisioned by experts and community partners who gathered in 2019 and 2020 to develop the Blueprint for Change: Guiding Principles for a System of Services for Children and Youth With Special Health Care Needs and Their Families. However, a variety of contextual factors impact health outcomes across the life course and intergenerationally and must be addressed to achieve this goal. For example, poverty and discrimination, including by some health care professionals and systems, are important, modifiable root causes of poor health outcomes. There are numerous barriers to achieving health equity, including political will, lack of resources, insufficient training, and limited cross-sector collaborations. Political, cultural, societal, and environmental interventions are necessary to eliminate health disparities and achieve health equity. The entities that serve CYSHCN should be equitably designed and implemented to improve health outcomes and address health disparities. Many entities that serve CYSHCN are taking positive steps through workforce development, policy changes, community engagement, and other means. The purpose of this article is to frame health equity for CYSHCN, detail their health disparities, review barriers to health equity, provide examples of strategies to advance health equity for them, and describe a path toward the future in which all CYSHCN have a fair and just opportunity to be as healthy as possible.

Children and Youth With Special Health Care Needs: A Profile.

The National Survey of Children's Health (NSCH) is the nation's primary source for data on children and youth with special health care needs (CYSHCN) and the only source for state-level estimates. We provide the latest estimates of CYSHCN in the United States, describe population characteristics, as well as the proportion that are served in a well-functioning system of care. Data from the 2016, 2017, 2018, and 2019 NSCH were appended, resulting in a final analytic sample of 30 301 CYSHCN. Bivariate associations between the covariates and SHCN status as well as the 6 core outcomes that comprise a well-functioning system of care were examined using χ2 tests. Multivariable logistic regression was used to identify factors independently associated with SHCN status and a well-functioning system of care. The overall prevalence of CYSHCN was 18.8% and ranged from 13.6% in Hawaii to 24% of individuals included in the NSCH in West Virginia. The most reported type of SHCN was prescription medication use (29.3%), whereas 25.9% of CYSHCN had functional limitations. Over one-third reported no daily activity impacts, whereas 18.9% reported consistent or significant daily impacts. CYSHCN were more likely than non-CYSHCN to be male, older, non-Hispanic Black, live in poverty, and have public insurance but disparities by race and ethnicity and income were no longer significant after adjustment. Only 14.9% of CYSHCN were reported to receive care in a well-organized system. Rates were substantially lower among older and more heavily affected children with adjusted rate ratios for access to a well-functioning system of care, indicating a 72% reduction for adolescents (12-17), compared with young children (0-5) and a 24% to 53% reduction for those with more than a prescription medication qualifying need. CYSHCN remain a sizable and diverse population with distinct challenges in accessing well-functioning systems of care, particularly for those with the greatest needs. Our results provide a profile of the population designed to inform future surveillance, research, program, and policy priorities showcased in this Special Issue.

Access to Services for Children and Youth With Special Health Care Needs and Their Families: Concepts and Considerations for an Integrated Systems Redesign.

Access to services for children and youth with special health care needs (CYSHCN) have typically emphasized coverage, service, timeliness, and capability. Yet families of CYSHCN continue to describe a fragmented health care system with significant unmet needs. For many years, the concept of access to services has focused on the services themselves, rather than starting with the needs of CYSHCN and their families. Meeting these needs should be grounded in health equity, address systemic racism and ableism, and emphasize the life course and journey of those with such needs and their families. In this paper, we start with the simple concept of asking that care is available for CYSHCN regardless of when, where, and how they need it. Access to services is built on relationships instead of a series of transactions. Opportunities for innovation include creating a single point of service entry; determining services based on need instead of diagnosis; and emphasizing service continuity, transition, and a place-based approach. The innovations reimagine access throughout the life course, centering care around a proactive, human-centered system that addresses health and all of its determinants. The landscape of antipoverty investments, cultural humility, workforce changes, technology, and human-centered thought in design have the potential to further transform the conceptual framework to improve access to services for CYSHCN and their families.

Quality of Life and Well-Being for Children and Youth With Special Health Care Needs and their Families: A Vision for the Future

To fulfill the promise of a life of dignity, autonomy, and independence for children and youth with special health care needs (CYSHCN) and their families, greater value must be assigned to meaningful outcomes, such as quality of life and well-being. Despite decades of research, programs, and measurements addressing quality of life and well-being for CYSHCN and their families, there still is no consensus on how to measure, implement, or achieve them. As the US health care system strives to reach the health care goals of safe, efficient, effective, equitable, timely, and patient-centered care, youth and families must be equal partners at all levels of the health care system-from clinical decision making to designing and implementing programs and policies. The health care system must systematically measure the priorities of CYSHCN and their families. It also must incorporate data on quality of life and well-being when developing services, supports, and systems that help CYSHCN and their families to flourish rather than hindering them.

A Blueprint for Change: Guiding Principles for a System of Services for Children and Youth With Special Health Care Needs and Their Families.

Children and youth with special health care needs (CYSHCN) and their families continue to face challenges in accessing health care and other services in an integrated, family-centered, evidence-informed, culturally responsive system. More than 12 million, or almost 86%, of CYSHCN ages 1-17 years do not have access to a well-functioning system of services. Further, the inequities experienced by CYSHCN and their families, particularly those in under-resourced communities, highlight the critical need to address social determinants of health and our nation's approach to delivering health care. To advance the system and prioritize well-being and optimal health for CYSHCN, the Health Resources and Services Administration's Maternal and Child Health Bureau, with input from diverse stakeholders, developed a set of core principles and actionable strategies for the field. This article presents principles and strategies in the Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and Their Families (Blueprint for Change), which acknowledges the comprehensive needs of CYSHCN, a changing health care system, and the disparities experienced by many CYSHCN. Four critical areas drive the Blueprint for Change: health equity, family and child well-being and quality of life, access to services, and financing of services. Although discussed separately, these critical areas are inherently interconnected and intend to move the field forward at the community, state, and federal levels. Addressing these critical areas requires a concerted, holistic, and integrated approach that will help us achieve the goal that CYSHCN enjoy a full life from childhood through adulthood and thrive in a system that supports their families and their social, health, and emotional needs, ensuring their dignity, autonomy, independence, and active participation in their communities.

Medical-Dental Integration: A Promising Approach To Address Unmet Dental Needs of Children and Youth With Special Health Care Needs

Background: This review presents strategies on how medical-dental integration and a patient-centered approach may address the unmet dental needs of children and youth with special health care needs (CYSHCN).Methods: Programs, strategies and frameworks to implement medical-dental integration to improve the overall quality of life of CYSHCN were reviewed. The authors propose a patient-centered health home (PCHH) as a step toward a patient-centered approach to medical-dental integration for CYSHCN.Results: Many federal, state and local organizations have emphasized the importance of medical-dental integration. Models and frameworks to implement integrated care in multiple settings have been developed and can be applied for CYSHCN. The proposed PCHH model includes integrated education, improved clinical collaboration, integrated health information technology and integrated financing. Ravenswood clinic is an example of an organization that has developed an integrated care model that serves children and adults with special health care needs.Conclusion: CYSHCN often seek services from multiple specialties that may or may not integrate care with a patient-centered approach. It is imperative to develop care systems that make oral health an inseparable part of general health and well-being.Practical implications: The PCHH is a promising approach to improve the overall health of CYSHCN. Incorporating oral health competencies for primary care providers and increasing the skills of dental providers to care for CYSHCN are important steps. Improved communication and clinical collaboration between dental and primary care providers to increase preventive dental services to CYSHCN will reduce the burden on the health care system. However, PCHH can only be practical by reforming the health care financing system.

Predoctoral Curriculum Modifications in Caring for Patients With Special Health Care Needs

Recent changes to educational competency standards have been implemented by the Commission on Dental Accreditation (CODA) in preparing dental students to care for patients with special health care needs. A major emphasis includes those patients with intellectual and developmental disabilities. This article offers some broad suggestions to consider when implementing curriculum changes in dental schools.

Introducing the Blueprint for Change: A National Framework for a System of Services for Children and Youth with Special Health Care Needs.

Introducing the Blueprint for Change: A National Framework for a System of Services for Children and Youth with Special Health Care Needs.

C.E. Credit. Strategies To Reduce the Use of General Anesthesia for Children and Adolescents With Special Health Care Needs: Dental Desensitization and ‘Shorten the Line’ Models

C.E. Credit. Strategies To Reduce the Use of General Anesthesia for Children and Adolescents With Special Health Care Needs: Dental Desensitization and ‘Shorten the Line’ Models

Oral Health Care for People With Special Health Care Needs: A Call to Action

Oral Health Care for People With Special Health Care Needs: A Call to Action

Oral Health Care For Californians With Special Health Care Needs: A Problem in Need of a Solution

Oral Health Care For Californians With Special Health Care Needs: A Problem in Need of a Solution

Parenting a child with a chronic illness during a pandemic

BackgroundNearly 20% of children in the United States experience one or more chronic health conditions. Parents of a child with a special healthcare need (CSHCN) experience increased stress caring for a child with chronic illness. PurposeThe purpose of this descriptive study is to describe stress in parents of a child with chronic illness during the COVID-19 pandemic. MethodsParents of CSHCN (n = 34) were asked to fill out the Pediatric Inventory for Parents (PIP) and answer two questions related to caring for their child during the COVID-19 pandemic. ConclusionsThe means of the PIP-F (M = 146.6, SD = 20.5) and PIP-D (M = 141.9, SD = 23.9) were significantly higher than in previous studies. There is statistically significant positive correlation between parent stress and variables of age of the child and the length of time since diagnosis. In response to the questions about the impact of COVID, nearly all parents reported COVID increased their stress and reported their stress was related to isolation, lack of resources, and concern for the mental health of other children in the household. Practice implicationsCOVID-19 likely exacerbated feelings of stress for parents of children with chronic health conditions. Although unprecedented, COVID-19 shed light on the existing fragility and high stress of parents of CSHCN. Pediatric nurses not only care for children, but must be advocates for the mental health of their patient's parents.

Awareness and Knowledge Regarding Treatment and Management of Children with Special Health Care Needs among Dental Professionals in India

Aim: To assess the awareness and knowledge regarding treatment and management of child with special health care needs among dental professionals in India Methods: A multiple choice electronic survey was sent to dentists of India. The data obtained was subjected to descriptive analysis Results: Majority of the dentists have witnessed a special child in their clinical practice but are not always able to determine the syndrome associated based on the symptoms, hence the child is further referred to a paediatric dentist Conclusion: Although awareness regarding a special child is considerably high amongst the Indian dentists, there remains a need to improvise the facilities for better treatment of these children. Keywords: Special health care needs, Awareness, Special child, Barriers.