Newborn Screening for Neurodevelopmental Disorders May Exacerbate Health Disparities.

Newborn screening (NBS) began in the early 1960s with screening for phenylketonuria on blood collected on filter paper. The number of conditions included in NBS programs expanded significantly with the adoption of tandem mass spectrometry. The recommended uniform screening panel provides national guidance and has reduced state variability. Universality and uniformity have been supported to promote equity. Recently, a number of researchers have suggested expanding NBS to include genomic sequencing to identify all genetic disorders in newborns. This has been specifically suggested for genes that increase the risk for neurodevelopmental disorders (NDDs), with the presumption that early identification in the newborn period would reduce disabilities. We offer arguments to show that genomic sequencing of newborns for NDDs risks exacerbating disparities. First, the diagnosis of NDD requires clinical expertise, and both genetic and neurodevelopmental expertise are in short supply, leading to disparities in access to timely follow-up. Second, therapies for children with NDDs are insufficient to meet their needs. Increasing early identification for those at risk who may never manifest developmental delays could shift limited resources to those children whose parents are more poised to advocate, worsening disparities in access to services. Rather, we suggest an alternative: genomic sequencing of all children with diagnosed NDDs. This focused strategy would have the potential to target genomic sequencing at children who manifest NDDs across diverse populations which could better improve our understanding of contributory genes to NDDs.

Paying Family Medical Caregivers for Children's Home Healthcare in Colorado: A Working Medicaid Model.

OBJECTIVE: To compare the characteristics and healthcare use of children with medical complexity who receive paid certified nursing assistant (CNA) care by a family member (family CNA) and by a traditional nonfamily member (nonfamily CNA). STUDY DESIGN: This was retrospective cohort study of children who received CNA care through Colorado's Medicaid paid family caregiving program between 2017 and 2019 by a home healthcare agency. We compared patient characteristics between the family CNA and nonfamily CNA groups. A multivariable Poisson regression model was used to compare hospitalization rates (days in the hospital per year), adjusting for patient age patient sex, nursing care, and complex chronic condition. RESULTS: Of 861 patients, 79% (n = 680) received family CNA care and 21% (n = 181) received nonfamily CNA care. Patient demographics and hospitalization did not differ between the groups, although patients who had family CNAs were less likely to receive additional nursing-level care (42% vs 60%, P < .01). Family and nonfamily CNA caregivers had similar characteristics, except that family CNA caregivers had substantially better 3-year retention (82% vs 9%, P < .01) despite lower average hourly pay ($14.60 vs $17.60 per hour, P < .01). Hospitalizations were rare (<10% of patients). In the adjusted model, patients who received family CNA care experienced 1 more hospitalized day per year, compared with patients who received nonfamily CNA care (P < .001). CONCLUSIONS: Paid family caregivers provided CAN-level care to children with medical complexity with a greater employee retention compared with nonfamily CNA caregivers, with marginally different hospitalization rates using a family-centered approach. This model may help address workforce shortages while also providing income to family caregivers.

Home Health Care Utilization in Children With Medicaid.

BACKGROUND: Although many children with medical complexity (CMC) use home health care (HHC), little is known about all pediatric HHC utilizers. Our objective was to assess characteristics of pediatric HHC recipients, providers, and payments. METHODS: We conducted a retrospective analysis of 5 209 525 children age 0-to-17 years enrolled Medicaid in the 2016 IBM Watson MarketScan Medicaid Database. HHC utilizers had ≥ 1 HHC claim. Healthcare Common Procedure Coding System (HCPCS) and Current Procedural Terminology (CPT) codes were reviewed to codify provider types when possible: registered nurse (RN), licensed practical nurse (LPN), home health aide (HHA), certified nursing assistant (CNA), or companion/personal attendant. Enrollee clinical characteristics, HHC provider type, and payments were assessed. Chronic conditions were evaluated with Agency for Healthcare Research and Quality's Chronic Condition Indicators and Feudtner's Complex Chronic Conditions. RESULTS: Of the 0.8% of children who used HHC, 43.8% were age <1 year, 25% had no chronic condition, 38.6% had a noncomplex chronic condition, 21.5% had a complex chronic condition without technology assistance, and 15.5% had technology assistance (eg, tracheostomy). HHC for children with technology assistance accounted for 72.6% of all HHC spending. Forty-five percent of HHC utilizers received RN/LPN-level care, 7.9% companion/personal attendant care, 5.9% HHA/CNA-level care, and 36% received care from an unspecified provider. For children with technology assistance, the majority (77.2%) received RN/LPN care, 17.5% companion/personal assistant care, and 13.8% HHA/CNA care. CONCLUSIONS: Children using HHC are a heterogeneous population who receive it from a variety of providers. Future investigations should explore the role of nonnurse caregivers, particularly with CMC.

Understanding Racial and Ethnic Disparities in Autism-Related Service Use Among Medicaid-Enrolled Children.

Racial and ethnic disparities in the use of nine common autism-related services among Medicaid-enrolled children with autism spectrum disorder (ASD) were examined, distinguishing between school and other community-based outpatient settings. Using 2012 Medicaid Analytic Extract data, we identified 117,848 continuously enrolled children with ASD. Several racial and ethnic disparities were found, varying by geography. Black, Asian, and Native American/Pacific Islanders received fewer outpatient services compared with white children, but there was no disparity for Latinx children. Black and Asian children received more school-based services than white children. Disparities in case management/care coordination services were largest and present in each minority group. Geographic variation in receipt of services suggests targets for policy intervention to improve access for minorities with ASD.

Unmet Respite Needs of Children With Medical Technology Dependence.

Children with medical technology dependency (MTD) require a medical device to compensate for a vital body function and substantial nursing care. As such, they require constant high-level supervision. Respite care provides caregivers with a temporary break, and is associated with reduced stress; however, there are often barriers. The study utilizes mixed methodology with the National Survey of Children with Special Health Care Needs (NS-CSHCN) and semistructured interviews with state-wide care coordinators to understand the gap for respite care services. Fifty-nine percent of parents who needed respite care received none. Parents of older children with MTD were more likely to report respite needs. Care coordinators described that home health shortages created barriers to respite care utilization, and the lack of respite care can lead to hospital readmission. Although respite care is a vital resource to support families of children with MTD, it is infrequently available, which can have severe consequences.

Pediatric patients with home mechanical ventilation: The health services landscape.

OBJECTIVE: Children with invasive home mechanical ventilation (HMV) are a growing population with complex health service needs. Single institution studies provide insight into successful program structures and outcomes. Our study objectives were to assess health service structures, providers, and programs caring for this population throughout the U.S., and to understand barriers to high-quality care. DESIGN: Using purposeful sampling with capture-recapture and snowball sampling methods, we identified key informants for care of the U.S. pediatric HMV population. Informants received web-based surveys with two reminders. Survey domains included respondent characteristics, HMV team composition, and barriers to care. RESULTS: Survey response was 71% with 101 completed. Respondents caring for patients in 45 states included physicians (61%), nurses (20%), therapists (12%), case managers (4%), and social workers (2%). Half (53%) of physicians were fellowship trained, most commonly pulmonology (22%) and critical care medicine (13%). The majority (65%) of providers described a dedicated HMV service. The majority (61%) of respondents from a HMV service provided both inpatient and outpatient care. Nearly all respondents (96%) described an inadequate supply of home nurses and 88% reported inadequate respite facilities. CONCLUSIONS: Children with HMV assistance receive care from a diverse group of providers with varied team structure. Heterogeneity may reflect patient diversity and provider interest, increasing efficacy but challenging standardization nationwide. Despite team structure variability, similar home care difficulties were universally experienced. Data suggest that the home nursing shortage is a national impediment to quality and efficient discharge with limited community-based support for this vulnerable population.

Prolonged Hospital Discharge for Children with Technology Dependency: A Source of Health Care Disparities.

Children with ventilator assistance have been supported in living at home since 1981 when parental advocacy ushered in a change to Medicaid policy. As the population of children who use medical technology such as long-term ventilation increases, we must critically evaluate our systems for preparing families for home life. Discharge delays persist in the modern era because of fragmentation between hospital and home systems. These discharge delays result in children spending time in less developmentally rich environments, further exacerbating the health and development disparities of children with complex disabilities. In this article, we discuss the complication of hospital discharge and how it contributes to health and developmental disparities. We also describe a hospital-to-home transitional care model, which presents a home-like environment to provide developmental support while focusing on parental training, home nursing, and public-funding arrangements. [Pediatr Ann. 2017;46(10):e365-e370.].

Positive Parenting Practices, Health Disparities, and Developmental Progress.

OBJECTIVE: To describe interactive activities between parents and young children in a nationally representative sample. We hypothesized that the frequency of participation in interactive activities would be different across economic strata and would be associated with developmental delay. METHODS: Children 4 to 36 months of age were identified by using The National Survey of Children's Health 2011-2012. Interactive caregiving practices were reported by poverty status. Developmental concerns were derived from caregiver responses and scoring of the Parents Evaluation of Developmental Status. Multivariable logistic regressions with weighting were used to explore the effect of interactive practices on risk for developmental delay across poverty levels. Covariates including age, gender, insurance type, maternal education, parenting stress, and ethnicity were adjusted in the models. RESULTS: In our sample (n = 12,642), caregivers with the lowest income versus highest income reported lower participation in reading (33% vs 64%; P < .0001), singing or telling stories (52% vs 77%, P < .0001), and taking their child on an outing (13% vs 22%, P < .0001). Less frequent participation in interactive activities during the week were associated with increased risk of developmental delay among low-income families (Reading odds ratio [OR] 1.57, 95% confidence interval [CI] 1.15-2.13; Singing songs/Telling Stories OR 1.66, 95% CI 1.15-2.40; Outings OR 1.48, 95% CI 1.11-1.97). CONCLUSIONS: Despite evidence emphasizing the protective effects of supportive parenting practices on early child development, our work demonstrates significant disparities in parenting practices that promote early child development between economically advantaged and disadvantaged parents. Innovative population-level strategies that enrich parenting practices for vulnerable children in early childhood are needed.

Teaching and assessment of ethics and professionalism: a survey of pediatric program directors.

OBJECTIVE: The Accreditation Council for Graduate Medical Education requires residency programs to provide instruction in and evaluation of competency in ethics and professionalism. We examined current practices and policies in ethics and professionalism in pediatric training programs, utilization of newly available resources on these topics, and recent concerns about professional behavior raised by social media. METHODS: From May to August 2012, members of the Association of Pediatric Program Directors identified as categorical program directors in the APPD database were surveyed regarding ethics and professionalism practices in their programs, including structure of their curricula, methods of trainee assessment, use of nationally available resources, and policies regarding social media. RESULTS: The response rate was 61% (122 of 200). Most pediatric programs continue to teach ethics and professionalism in an unstructured manner. Many pediatric program directors are unaware of available ethics and professionalism resources. Although most programs lack rigorous evaluation of trainee competency in ethics and professionalism, 30% (35 of 116) of program directors stated they had not allowed a trainee to graduate or sit for an examination because of unethical or unprofessional conduct. Most programs do not have formal policies regarding social media use by trainees, and expectations vary widely. CONCLUSIONS: Pediatric training programs are slowly adopting the educational mandates for ethics and professionalism instruction. Resources now exist that can facilitate curriculum development in both traditional content areas such as informed consent and privacy as well as newer content areas such as social media use.