An Expanded Approach to the Ascertainment of Children and Youth With Special Health Care Needs.

OBJECTIVE: To describe the prevalence, characteristics, and health-related outcomes of children with diagnosed health conditions and functional difficulties who do not meet criteria for having a special health care need based on the traditional scoring of the Children with Special Health Care Needs (CSHCN) Screener. METHODS: Data come from the 2016 to 2021 National Survey of Children's Health (n = 225 443). Child characteristics and health-related outcomes were compared among 4 mutually exclusive groups defined by CSHCN Screener criteria and the presence of both conditions and difficulties. RESULTS: Among children who do not qualify as children and youth with special health care needs (CYSHCN) on the CSHCN Screener, 6.8% had ≥1 condition and ≥1 difficulty. These children were more likely than CYSHCN to be younger, female, Hispanic, uninsured, privately insured, living in a household with low educational attainment, have families with more children and a primary household language other than English. After adjustment, non-CYSHCN with ≥1 conditions and ≥1 difficulty were less likely than CYSHCN, but significantly more likely than other non-CYSHCN, to have ≥2 emergency department visits, have unmet health care needs, not meet flourishing criteria, live in families that experienced child health-related employment impacts and frustration accessing services. Including these children in the calculation of CYSHCN prevalence increases the national estimate from 19.1% to 24.6%. CONCLUSIONS: Approximately 4 million children have both a diagnosed health condition and functional difficulties but are not identified as CYSHCN. An expanded approach to identify CYSHCN may better align program and policy with population needs.

Children with special health care needs and mothers' anxiety/depression: Findings from the Tokyo Teen Cohort study.

AIM: Children with special health care needs (CSHCN) are those who require more care for their physical, developmental, or emotional differences than their typically developing peers. Among a wide range of burdens that caregivers of CSHCN experience, the mental burden of caregivers is still not well investigated. This study aimed at examining the relationship between caring for CSHCN and mothers' anxiety/depression. METHODS: This study used data from the Tokyo Early Adolescence Survey, a population-based cross-sectional survey. Using screening questionnaires, we evaluated the prevalence of CSHCN and identified their primary caregivers. Focusing on mothers as caregivers, we analyzed the relationship between having CSHCN and mothers' anxiety/depression, and between the severity of children's condition and mothers' anxiety/depression. We further determined what mediates these relationships using path analyses. RESULTS: Among 4003 participants, we identified 502 CSHCN (12.5%), and 93% of responding caregivers were mothers. We found that mothers with CSHCN were significantly more anxious/depressed than those without CSHCN, which was closely related to the severity of children's condition. The mediation effect of social support on the relation between CSHCN and mothers' anxiety/depression was statistically significant. CONCLUSION: Mothers of CSHCN were more anxious/depressed than other mothers in this study. Social support was indicated to have a significant mediating effect on the relationship between CSHCN and mothers' anxiety/depression. Our results suggest that considering ways to offer social support may effectively relieve the mental stress experienced by mothers of CSHCN.

Children With Special Health Care Needs and Forgone Family Employment.

BACKGROUND: Family income is known to affect child health, but this relationship can be bidirectional. We sought to characterize this relationship by quantifying forgone family employment (FFE) due to a child's health condition in families of children with special health care needs (CSHCN) with updated figures. METHODS: We conducted a secondary data analysis from the 2016-2017 National Survey of Children's Health. CSHCN with previously employed caregivers were included (N = 14 050). FFE was defined as any family member having stopped work and/or reduced hours because of their child's health or health condition. Child, caregiver, and household characteristics were compared by FFE status. Logistic regression analysis was conducted to evaluate the association between hours of medical care provide by a family member and FFE. US Bureau of Labor Statistics reports were used to estimate lost earnings from FFE. RESULTS: FFE occurred in 14.5% (95% confidence interval [CI] 12.9%-16.1%) of previously employed families with CSHCN and was 40.9% (95% CI 27.1%-54.7%) for children with an intellectual disability. We observed disproportionately high FFE among CSHCN who were 0 to 5 years old and of Hispanic ethnicity. We found a strong association between FFE and increasing hours of family-provided medical care, with an adjusted odds ratio (aOR) of 1.72 (95% CI 1.25-2.36) for <1 hour per week (compared with 0 hours), an aOR of 5.96 (95% CI 4.30-8.27) for 1 to 4 hours per week, an aOR of 11.89 (95% CI 6.19-22.81) for 5 to 10 hours per week, and an aOR of 8.89 (95% CI 5.26-15.01) for >10 hours per week. Lost earnings for each household with FFE were estimated at ∼$18 000 per year. CONCLUSIONS: With our findings, we highlight the need to implement programs and policies that address forgone income experienced by families of CSHCN.

Assessment of Have Problems and Care Burdens of Mothers with Handicapped Children in COVID-19 Pandemic.

In the study, it was aimed to evaluate the problems and care burden of mothers who have a handicapped child in the pandemic process. The population of the descriptive study consisted of the mothers of the children who came to the rehabilitation center (n = 230), and the sampling consisted of the mothers who wanted to participate in the study (n = 216). The research data were collected through social media and the data were analyzed using the mean, standard deviation, percentage and frequency measurements, independent sample t test, Oneway anova, Kruskal wallis tests in the SPSS program. In the study, Burden Interview Scale (BIS) scores of the mothers who stated that the educational status of their child was adversely affected in the pandemic, stated that they were worried that there would be someone to take care of my child if I died, stated that the child's health checks were interrupted, stated that they did not send their child to school due to the fear of COVID-19, and reported that they had a problem in reaching the health institution was determined were significantly higher than. Mothers with handicapped children stated that their children experienced difficulties in important situations such as health checks and educations during the pandemic period. In addition, it was found that the care burden of these mothers was higher. During the pandemic period, it is necessary to make and support new regulations in accordance with the disability of these special children with state policies as well as healthcare professionals.

Caregiver's difficulty paying child's healthcare bills and bullying victimization of adolescents with physical disabilities.

Guided by the ecological systems perspective, the objective of the study was to examine whether caregivers' difficulty paying their child's health-care bills is associated with bullying victimization directly and indirectly through the mediating mechanisms of caregivers' frustration, adolescents' internalizing problems, and social difficulty focusing on adolescents with physical disabilities. The 2019 National Survey of Children's Health dataset, which collected data on adolescents' and caregivers' demographic characteristics and health and well-being, was used. The study sample consisted of 368 caregivers of adolescents, 12-17 years of age with physical disabilities. No direct association between caregivers' difficulty paying their child's health-care bills and bullying victimization was found. However, caregivers' frustration and adolescents' internalizing problems were shown to have an indirect association with bullying victimization, which was mediated by difficulty making friends. In addition, adolescents' difficulty making friends was positively associated with bullying victimization. Practitioners working with adolescents with physical disabilities are encouraged to foster collaborative processes across various ecological systems of the adolescent and family to address caregivers' frustration and promote positive social and emotional development of the adolescent with physical disabilities, which can decrease their risk of bullying victimization.

Children with special health care needs attending emergency department in Italy: analysis of 3479 cases.

BACKGROUND: Although children with special health care needs (CSHCN) represent a minority of the population, they go through more hospitalizations, more admissions to the Emergency Department (ED), and receive a major number of medical prescriptions, in comparison to general pediatric population. Objectives of the study were to determine the reasons for admission to the ED in Italian CSHCN, and to describe the association between patient's demographic data, clinical history, and health services requirements. METHODS: Ad hoc web site was created to collect retrospective data of 3479 visits of CSHCN to the ED in 58 Italian Hospitals. RESULTS: Seventy-two percent of patients admitted to ED were affected by a previously defined medical condition. Most of the ED admissions were children with syndromic conditions (54%). 44.2% of the ED admissions were registered during the night-time and/or at the weekends. The hospitalization rate was of 45.6% among patients admitted to the ED. The most common reason for admission to the ED was the presence of respiratory symptoms (26.6%), followed by gastrointestinal problems (21.3%) and neurological disorders (18.2%). 51.4% of the access were classified as 'urgent', with a red/yellow triage code. Considering the type of ED, 61.9% of the visits were conducted at the Pediatric EDs (PedEDs), 33.5% at the Functional EDs (FunEDs) and 4.6% at the Dedicated EDs (DedEDs). Patients with more complex clinical presentation were more likely to be evaluated at the PedEDs. CSHCN underwent to a higher number of medical procedures at the PedEDs, more in comparison to other EDs. Children with medical devices were directed to a PedED quite exclusively when in need for medical attention. Subjects under multiple anti-epileptic drug therapy attended to PedEDs or FunEDs generally. Patients affected by metabolic diseases were more likely to look for medical attention at FunEDs. Syndromic patients mostly required medical attention at the DedEDs. CONCLUSIONS: Access of CSHCN to an ED is not infrequent. For this reason, it is fundamental for pediatricians working in any kind of ED to increase their general knowledge about CHSCN and to gain expertise in the management of such patients and their related medical complexity.

The Compounding Effect of Race/Ethnicity and Disability Status on Children's Health and Health Care by Geography in the United States.

OBJECTIVE: The objective of this study was to examine the potential compounding effect of race/ethnicity, and disability status on children's health and health care, stratified by selected geographies. METHODS: We used the 2011/2012 NSCH and the 2012 Boston Survey of Children's Health for our compounded disparity analysis. We used VanderWheel and Knol method to first predict combined risk ratios of race/ethnicity and disability and then compared them with the observed combined risk ratios. RESULTS: We demonstrated that racial/ethnic minority children with disabilities experience additional disparities in health care access outcomes that are greater than the sum of the effects from either characteristic alone. Further, we demonstrate that disparities persist across all selected geographies irrespective of whether children lived in states or metropolitan cities with the best health care systems in the United States. CONCLUSIONS: Despite reform efforts, our study demonstrates that racial/ethnic minority children with disabilities experience a double burden. Given the deleterious compounded disparities, public health and social service programs at all geographical levels should prioritize identifying participants that face this and tailor programs to meet their needs.

Paediatric scoliosis: Update on assessment and treatment.

BACKGROUND: Paediatric scoliosis is a common condition seen by general practitioners. Structural scoliosis is characterised by axial rotation at the apex. Several new operative treatments have recently been developed. OBJECTIVE: The aim of this article is to give an overview of scoliosis diagnosis, assessment and management. DISCUSSION: Scoliosis assessment should identify structural curves, underlying causes, severity and growth potential. Atypical curves and red flags must be excluded. Observation is appropriate for curves <20° in patients with high growth potential (Risser 0-2) and curves <40° in patients with minimal growth potential (Risser 3-5). Bracing is appropriate for patients with a curve of 20-40° with high growth potential. Indications for surgery vary depending on patient and curve factors; however, surgery can be indicated when the curve is >40°. Surgery can be divided into three groups: growth modulation, instrumentation without fusion and instrumentation with fusion. Early diagnosis and referral to a paediatric spine service can improve outcomes.

Children With Special Needs: Social Determinants of Health and Care Coordination.

Care coordination (CC) facilitates access to resources/services for children/youth with special health care needs (CYSHCN). We conducted a cross-sectional analysis of the 2009-2010 National Survey of CSHCN to examine socioeconomic factors related to report of receiving adequate CC services for CYSHCN. Descriptive statistics were used to describe sociodemographic characteristics of respondents and examine socioeconomic factors. Receiving adequate CC varied by socioeconomic variables including income (100% to 199% federal poverty line [FPL]; aOR [adjusted odds ratio] = 0.848; 95% CI [confidence interval] = 0.722-0.997; P < .05), insurance (uninsured; aOR = 0.446; 95% CI = 0.326-0.609; P < .0001), and marital status (never married; aOR = 0.79; 95% CI = 0.64-0.97; P < .05). More families reporting adequate CC had private insurance, non-Hispanic white ethnicity, income >400% federal poverty level, and 2-parent households. Findings suggest unmet needs in terms of adequate access or knowledge leading to insufficient provision of CC for families with the greatest needs. Further analysis identifying specific deficits and implementing strategies to address these disparities is warranted.

Prevalence and clinical characteristics of children with medical complexity in Tottori Prefecture, Japan: A population-based longitudinal study.

OBJECTIVES: To investigate the prevalence and background of children with medical complexity (CMC) and its secular trend in Japan. METHODS: CMC were defined as patients under the age of 20 years requiring medical care and devices. The patients were enrolled using the national health insurance claims data of three hospitals and two rehabilitation centers in Tottori Prefecture. The study period was divided into three periods: Period 1, 2007-2010; Period 2, 2011-2014; and Period 3, 2015-2018. RESULTS: A total of 378 CMC were enrolled. The prevalence of CMC was 1.88 per 1000 population among subjects aged <20 years in 2018, and it increased by approximately 1.9 times during the study period. The number of CMC who presented with severe motor and intellectual disabilities did not change from Period 1 to Period 3. Meanwhile, the number of CMC who had relatively preserved motor and intellectual abilities increased from 58 to 98. The proportion of CMC who required respiratory management and oxygen therapy increased by 1.3 and 1.8 times, respectively. By contrast, the proportion of CMC who need tube feeding decreased significantly between periods 1 and 3 (P < 0.05). CONCLUSIONS: The prevalence of CMC increased almost twice during the 12-year study period; however, the increase in the number of patients with relatively preserved motor and intellectual abilities was pronounced. This study showed that the need for medical care and devices differed based on the underlying disorders and severity of CMC; therefore, individualized medical, welfare, and administrative services and education about the various types of CMC must be provided.

Concurrent Validity of the School Outcomes Measure and the School Function Assessment in Elementary Students.

PURPOSE: Examine the concurrent validity of the School Outcomes Measure (SOM) and the School Function Assessment (SFA) in students kindergarten through sixth grade. METHODS: Twenty-four school-based therapists completed the SOM and the SFA for 42 students, representing Gross Motor Function Classification System (GMFCS) levels I to V. RESULTS: Correlation coefficients between SOM Self-Care, Mobility, and Assuming Student's Role median total scores and the 21 SFA Activity Performance scale median criterion scores were statistically significant. There were significant correlation coefficients between SOM Expressing Learning and Behavior and SFA median criterion scores. The SOM differentiated between GMFCS groups for all physical tasks but not cognitive/behavioral tasks, and the SFA for half of the physical tasks. CONCLUSIONS: Overall, student performance on the SOM was consistent with participation on the SFA, which lends support to the preliminary validity of the SOM. The GMFCS analysis suggests that the SOM differentiates between the GMFCS levels for physical tasks.

Disability among children of immigrants from India and China: Is there excess disability among girls?

We investigate whether there is excess morbidity among daughters of Indian or Chinese immigrants in the US by studying the prevalence of disability among children. We use data from the 2012-14 American Community Surveys on approximately 20,000 US-born children of Indian and Chinese immigrants. Children of US natives are used as a comparison group to account for innate differences in disability between the sexes. Results indicate that there is excess disability among daughters compared with sons among children of Chinese immigrants and children of immigrants from northern or western Indian states; this excess disability declines with younger age at arrival or longer exposure to the host country. Analysis using children of Filipino immigrants as an alternative comparison group yields similar excess disability rates for females. Supplementary material is available for this article at: https://doi.org/10.1080/00324728.2020.1762911.

Global prevalence estimates of three chronic musculoskeletal conditions: club foot, juvenile idiopathic arthritis and juvenile systemic lupus erythematosus.

BACKGROUND: Musculoskeletal (MSK) conditions are a major source of morbidity and disability. There is a lack of global comparable data on the burden of MSK conditions in children and young people. Our aim was to estimate the global prevalence of three MSK conditions - Talipes Equinovarus (Clubfoot), Juvenile Idiopathic Arthritis (JIA) and Juvenile Systemic Lupus Erythematosus (JSLE). METHODS: Using reported prevalence rates, age-stratified population data within the World Bank Data Bank in 2017 and United Nations country classification, we estimated the prevalence of these MSK conditions in < 5 year olds (clubfoot) and < 16 year olds (JIA and JSLE) across the world. RESULTS: We estimated that in 2017, there were ~ 675,061 < 5 year olds with clubfoot among 675,100,000 < 5 year olds, ~ 2,069,246 < 16 year olds with JIA and ~ 206,931 < 16 year olds with JSLE per 2,069,000,000 < 16 year olds, totalling ~ 2,951,238 with one of these conditions. Disease prevalence was greatest in Asia (South Asia), followed by Africa, Americas, Europe and Oceania. CONCLUSIONS: An estimated 3 million children and young people globally are currently living with either clubfoot, JIA or JSLE; many in Asia and Africa. Further work is needed urgently to engage with global stakeholders to work together to improve access to effective care for the many who are affected and reduce the otherwise adverse lifelong impact on their health, quality of life and the impact on society.

Food security and health in transition to adulthood for individuals with disabilities.

BACKGROUND: Due to a more stringent disability definition used for eligibility redetermination at age 18, individuals with disabilities may lose eligibility for the Supplement and Nutrition Assistance Program (SNAP). OBJECTIVE: This study examines how the transition to adulthood may affect the association between food security and self-rated health and healthcare needs for individuals with disabilities. METHODS: The study uses five years of data (2011-2015) from the National Health Interview Survey (NHIS). One health indicator, self-rated health status, and two indicators of unmet healthcare needs, delayed medical care and not receiving medical care due to cost, are analyzed as dependent variables. The effects of food security status on health and health-related outcomes are closely examined for the four groups: youth without disabilities, youth with disabilities, young adults without disabilities and young adults with disabilities. RESULTS: Results indicate a statistically significant association between food security status and self-rated health and unmet healthcare needs in late childhood and young adulthood. Such association is stronger for young adults than for youth. The association between low food security and self-rated health and health-related outcomes does not significantly differ between the two youth groups or the two young adult groups by disability status. CONCLUSIONS: Suggestions for improving accessibility of public food and nutrition programs are discussed. The study also suggests the importance of creating a healthcare system that benefits every member of the society.

Trends Over Time and Jurisdiction Variability in Supplemental Security Income and State Supplementary Payment Programs for Children With Disabilities.

CONTEXT: Nearly 1.2 million children with disabilities received federally administered Supplemental Security Income (SSI) payments in 2017. Based on a robust review of research and evaluation evidence and microsimulations, The National Academies of Sciences, Engineering, and Medicine committee identified modifications to SSI (ie, increasing the federal SSI benefit maximum by one-third or two-thirds) as 1 of 10 strategies that could reduce the US child poverty rate, improving child health and well-being on a population level. OBJECTIVE: Describing the availability and amount of SSI and State Supplementary Payment (SSP) program benefits to support families of children with disabilities may be a first step toward evaluating The National Academies of Sciences, Engineering, and Medicine-proposed modification to SSI as a potential poverty alleviation and health improvement tool for children with disabilities and their families. DESIGN: We used public health law research methods to characterize the laws (statutes and state agency regulations) governing the federal SSI program and SSP programs in the 50 states and District of Columbia from January 1, 1996, through November 1, 2018. RESULTS: The number of jurisdictions offering supplementary payments (SSP) was relatively stable between 1996 and 2018. In 2018, 23 US jurisdictions legally mandated that SSP programs were available for children. Among the states with SSP payment amounts in their codified laws, SSP monthly benefit amounts ranged from $8 to $64.35 in 1996 and $3.13 to $60.43 in 2018. CONCLUSION: Our initial exploration of SSI-related policies as a tool for improving the economic stability of children with disabilities and their families suggests that current SSPs, in combination with SSI, would not rise to the level of SSI increases proposed by The National Academies of Sciences, Engineering, and Medicine. Understanding more about how SSI and SSP reach children and work in combination with other federal and state income security programs may help identify policies and strategies that better support children with disabilities in low-income households.

Relationships Between Material Hardship, Resilience, and Health Care Use.

BACKGROUND: Material hardship has been associated with adverse health care use patterns for children with special health care needs (CSHCN). In this study, we assessed if resilience factors were associated with lower emergency department (ED) visits and unmet health care needs and if they buffered associations between material hardship and health care use for CSHCN and children without special health care needs. METHODS: A cross-sectional study using the 2016 National Survey of Children's Health, restricted to low-income participants (<200% federal poverty level). Separately, for CSHCN and children without special health care needs, weighted logistic regression was used to measure associations between material hardship, 2 resilience factors (family resilience and neighborhood cohesion), and 2 measures of use. Moderation was assessed using interaction terms. Mediation was assessed using structural equation models. RESULTS: The sample consisted of 11 543 children (weighted: n = 28 465 581); 26% were CSHCN. Material hardship was associated with higher odds of ED visits and unmet health care needs for all children. Resilience factors were associated with lower odds of unmet health care needs for CSHCN (family resilience adjusted odds ratio: 0.58; 95% confidence interval: 0.36-0.94; neighborhood cohesion adjusted odds ratio: 0.53; 95% confidence interval: 0.32-0.88). For CSHCN, lower material hardship mediated associations between resilience factors and unmet health care needs. Neighborhood cohesion moderated the association between material hardship and ED visits (interaction term: P = .02). CONCLUSIONS: Among low-income CSHCN, resilience factors may buffer the effects of material hardship on health care use. Future research should evaluate how resilience factors can be incorporated into programs to support CSHCN.

Analysis of Care Coordination Needs for Families of Children with Special Health Care Needs.

OBJECTIVES: To identify the diverse services required by families of children with special health care needs (CSHCN) and identify the specific care coordination (CC) efforts associated with the most common types of observed diagnoses. Requested services were categorized into specific sectors, and CC efforts were quantified by observed diagnoses and defined sectors. METHODS: CC service data were extracted and analyzed from patient encounters over 4 years (2009-2013) in a department database. This included descriptive information about referrals and linkages to medical, dental, and behavioral health providers and to state, private, and community agencies. Diagnostic classifications and CC sectors were defined to enable categorization. RESULTS: A total of 2682 CSHCN records were reviewed. The majority (59%) required services/resources in 1 to 2 sectors, 24% required services/resources in 3 to 5 sectors, and 17% required services/resources in 6 or more sectors. Including informational service, the most frequently required sectors across the study population were education, financial, medical/dental, social connections, and advocacy. Children diagnosed with autism spectrum disorder had the highest needs across all sectors. CONCLUSION: Most CSHCN and their families use a substantial amount of CC time and effort to secure services from diverse sectors. High-quality and efficient CC requires an understanding of the specific needs of these CSHCN and their families and how to link them to a diverse array of services and resources.

CSHCN with hearing difficulties: Disparities in access and quality of care.

BACKGROUND: Hearing difficulties (HD) affect a sizable minority of children in the United States and can have a significant impact on child development. Children with HD may face barriers around language development, communication abilities, learning, and social interactions, which in turn can affect multiple aspects of their lives. OBJECTIVE/HYPOTHESIS: Little is known about the extent to which children with HD have access to a system of care and we hypothesize that this population may experience significant unmet needs. METHODS: In this cross-sectional study, using bivariate and multivariable regression models, we analyzed data from the 2009/2010 National Survey of Children with Special Health Care Needs (NS-CSHCN). Selected survey items were used to assess health and healthcare characteristics of CSHCN with some level of HD (n = 2,315) compared to those without HD (n = 37,851). The study sample included 40,242 CSHCN aged 0-17 years, whose caregivers responded to the survey. RESULTS: Approximately 694,000 CSHCN in the U.S. were reported to have any level of HD, representing 6.3% of the CSHCN population. Compared to CSHCN without HD, those with HD were less likely to have access to a medical home, community services, or have adequate health insurance. CONCLUSIONS: Significant deficits in medical home access, adequate insurance, and accessibility of community-based services are evident for CSHCN with HD. Families having knowledge of how and when to access community services and partner with providers in their child's health care is important for the overall health and wellbeing of this subpopulation of CSHCN.

Are the health needs of children with disabilities being met at primary schools?

The aim of this study was to provide current information about the health profile and needs of mainstreamed primary school children with disabilities and special educational needs during their school hours. The Study population is composed of students with special educational needs and disabilities attending mainstream primary schools located in three selected Turkish districts with low, moderate, and high socioeconomic status and literacy rates separately. Parents of 404 students from 72 primary schools constituted the research sample. The study showed that 13.4% of the students with disabilities had chronic illnesses and 8.9% had health problems requiring access to emergency medical care when the condition recurs (such as epileptic seizures, fainting, or falling). Of the students with disabilities, 39.9% usually or sometimes needed medical care during school hours in the previous week. Health needs of nearly half of the students with disabilities were met at school. Special health needs and risks of children with disabilities also continue at school along with other possible health concerns.

Parasitic Infections in Children with Disability in Resource Poor Settings: The Research Gaps.

The burden of parasitic infections among children with disability in resource-poor settings has not been summarised through a focused review. Here, we have summarised the key studies reporting the burden of parasitic infections among children without and with a disability. In most instances, among children without disability, Giardia or soil-transmitted helminths dominate the epidemiology, while among disabled individuals, enteric protozoa are the predominant parasites to be reported in both resource-rich and resource-poor countries. Cryptosporidium is generally the leading protozoan to be detected among these populations but all other parasites have been detected in varying frequencies. There is a paucity of data on the precise epidemiology of parasitic infections in children with disability. A large-scale epidemiological study, using modern genomic methodology, is a research priority.