Health Care for Youth With Neurodevelopmental Disabilities: A Consensus Statement.

Individuals with a neurodevelopmental disability (NDD) face significant health care barriers, disparities in health outcomes, and high rates of foregone and adverse health care experiences. The Supporting Access for Everyone (SAFE) Initiative was developed to establish principles of health care to improve equity for youth with NDDs through an evidence-informed and consensus-derived process. With the Developmental Behavioral Pediatric Research Network, the SAFE cochairs convened a consensus panel composed of diverse professionals, caregivers, and adults with NDDs who contributed their varied expertise related to SAFE care delivery. A 2-day public forum (attended by consensus panel members) was convened where professionals, community advocates, and adults with NDDs and/or caregivers of individuals with NDDs presented research, clinical strategies, and personal experiences. After this, a 2-day consensus conference was held. Using nominal group technique, the panel derived a consensus statement (CS) on SAFE care, an NDD Health Care Bill of Rights, and Transition Considerations. Ten CSs across 5 topical domains were established: (1) training, (2) communication, (3) access and planning, (4) diversity, equity, inclusion, belonging, and anti-ableism, and (5) policy and structural change. Relevant and representative citations were added when available to support the derived statements. The final CS was approved by all consensus panel members and the Developmental Behavioral Pediatric Research Network steering committee. At the heart of this CS is an affirmation that all people are entitled to health care that is accessible, humane, and effective.

Use of Telehealth in Fellowship-Affiliated Developmental Behavioral Pediatric Practices During the COVID-19 Pandemic.

OBJECTIVE: This study aims to describe the use of telehealth in developmental behavioral pediatric (DBP) fellowship-affiliated practices during the coronavirus disease 2019 (COVID-19) global pandemic. METHODS: An electronic survey was disseminated to all DBP fellowship-associated practice locations to determine the use of telehealth in DBP care provision, before and since the beginning of the COVID-19 pandemic. We analyzed responses using descriptive statistics. RESULTS: A total of 35 of 42 eligible practice sites responded (83% response rate). Most sites (51.4%) reported using telehealth less than once per month before the COVID-19 pandemic. Since the onset of COVID-19, 100% of programs reported conducting video-based telehealth visits multiple days per week. Most sites reported conducting evaluations and follow-up visits for attention-deficit/hyperactivity disorder, autism spectrum disorder, behavioral concerns, developmental delay, genetic disorders, and learning disability. Most sites were able to continue medication management by telehealth (>88%), offer interpreter services for families with limited English proficiency participating in telehealth visits (>90%), and incorporate trainees and interdisciplinary team members in telehealth visits (>90%). Greater variability was observed in sites' ability to collect telehealth practice evaluation measures. CONCLUSION: Most sites are providing evaluations and ongoing care for DBP conditions through telehealth. The rapid adoption of telehealth can have ramifications for the way that DBP care is delivered in the future; therefore, it is imperative to understand current practice patterns and variations to determine the best use of telehealth.

Epidemiology of Treatment for Preschoolers on Kentucky Medicaid Diagnosed with Attention-Deficit/Hyperactivity Disorder.

Objectives: The National Survey of Children's Health reported a concerning increase in children 2-5 years being diagnosed with attention-deficit/hyperactivity disorder (ADHD) in 2016. Concerns include both the increase in diagnosing and potential deviations from published guidelines for the treatment of ADHD in preschoolers. The present study aims to describe the epidemiology and factors associated with receiving the diagnosis and treatment types for low-income preschoolers. Methods: Using Kentucky Medicaid claims from 2012 to 2017, a retrospective cohort study of children 2-5 years of age (n = 337,631) with a diagnosis of ADHD (n = 11,712) was completed. Trends in demographics, comorbidities, and treatment and provider types are presented. Multinomial logistic regression was used to determine predictors of receipt of the diagnosis and treatment type (a stimulant only, an alpha-2 agonist [A2A] only, both, or neither) based on nonmissing 2017 data (n = 2394). Results: The number of children in the cohort diagnosed with ADHD and receiving a stimulant decreased from 2012 to 2017, but the use of A2As increased. Primary care physicians were the most frequent prescribers of both medications. The adjusted odds ratios (AORs) of receipt of an A2A alone, stimulant alone, or both medications over receiving no ADHD medication were associated with specific demographics and comorbid conditions for each medication regimen. Race/ethnicity is associated with receiving the diagnosis of ADHD and treatment with A2A. Comorbid mental health conditions and provider type are associated with treatment type. Conclusion: Use of stimulants for preschoolers in Kentucky has decreased and A2A use has increased since 2012. Continued vigilance and long-term follow-up of preschoolers with ADHD are warranted. The appropriateness of the diagnosis and treatment type could not be determined.

Private Versus Medicaid Patients Referred to Developmental Behavioral Pediatricians: Do They Differ? A DBPNet Study.

BACKGROUND: It is unknown how insurance status affects elements of evaluation at developmental behavioral (DB) pediatric sites. OBJECTIVE: To compare DB referrals, evaluation, and treatment for children with Medicaid and private insurance. DESIGN/METHODS: Fifty-six developmental behavioral pediatricians at 12 sites recorded anonymous data on structured forms for ≤15 consecutive referrals. Children with Medicaid (n = 309) and private insurance (n = 393) were compared on sociodemographic factors, referral concerns, evaluation elements, and resulting diagnoses. All significant bivariate findings were verified in multivariable models controlling for site and sociodemographic characteristics. RESULTS: Those with Medicaid were significantly less likely to be white (30% vs 63%) and to have parents who went beyond high school (50% vs 92%) and who spoke English (89% vs 97%) (all p < 0.001). Referral sources were similar, except that fewer children with Medicaid were self-referred (12% vs 22%; p < 0.01). Both groups presented with multiple concerns, ∼3/child, especially speech and language delays, autism spectrum disorder, and attention-deficit hyperactivity disorder. Children with Medicaid tended to present more often with concerns about other behavior problems (14% vs 7%; p = 0.05). Wait times to appointments were similar (∼20 weeks), and visits were over 2 hours in length. Only 1 of 92 services and recommendations differed significantly. CONCLUSION: There were few differences in care, but most DB patients presented with multiple concerns and had complex evaluations. Regardless of the insurance type, they experienced long wait times that may be detrimental to therapeutic outcomes.

Children with special physical health care needs: restraint use and injury risk in motor vehicle crashes.

Physical disabilities may affect a child passenger's fit within a conventional motor vehicle restraint. The aim of this study is to describe and compare injury risk in motor vehicle crashes (MVC) among children with and without special physical health care needs (SPHCN). This analysis, conducted in 2007-2008, utilizes data collected between December 1998 and November 2002 in a cross-sectional study of children ≤15 years old involved in crashes of State-Farm insured vehicles in 15 states and the District of Columbia. Parent reports via telephone survey were used to define pre-crash SPHCN, restraint status, and occurrence of significant injuries using a validated survey. Complete data were collected for 18,852 children aged 0-15 years; 159 children were reported to have a SPHCN (0.8% and 0.7% of children aged 0-8 and 9-15 years, respectively). A greater proportion of children with SPHCN aged 0-8 years were appropriately restrained (P < 0.001), but there was no significant difference in restraint use among children with and without SPHCN aged 9-15 years. There was no significant association between the presence of a SPHCN and injury risk in either age group, after adjustment for child/driver characteristics (children aged 0-8 years: OR 1.27, 95% CI: 0.48-3.33; children aged 9-15 years: OR 1.51, 95% CI: 0.38-6.11). Children with and without SPHCN have similar injury risk in MVC, despite increased age-appropriate restraint usage among children aged 0-8 years. When counseling families about vehicle safety, practitioners should consider the fit of a child with SPHCN in a restraint system.

Children with special health care needs: patterns of safety restraint use, seating position, and risk of injury in motor vehicle crashes.

OBJECTIVES: Special health care needs associated with behavioral conditions may influence a child's safety in motor vehicle crashes. The aim of this study was to describe and compare variation in restraint use, seating position, and injury risk in motor vehicle crashes among children with and without special health care needs likely to affect behavior. PATIENTS AND METHODS: This study uses data collected between December 1, 1998, and November 30, 2002, in a cross-sectional study of children <16 years of age who were involved in crashes of State Farm-insured vehicles in 15 states. Parent reports via a validated telephone survey were used to define precrash special health care needs, restraint status, seating position, and the occurrence of clinically significant injuries by using a previously validated survey instrument. RESULTS: Complete data were collected for 14654 children aged 4 to 15 years, representing 171633 children in crashes. Of these, 152 children were reported to have a special need likely to affect behavior, representing 1883 children. A greater proportion of children with special needs likely to affect behavior were appropriately restrained, particularly among children aged 4 to 8 years. Drivers of children with special needs likely to affect behavior were more often restrained and more often were the child passenger's parent. There were no differences in the rates of front-row seating. There was no significant association between the presence of a special need likely to affect behavior and risk of injury, after adjustment for child/driver characteristics and crash severity. CONCLUSIONS: Despite a greater proportion of children with special needs likely to affect behavior using proper vehicle restraint, their injury risk was similar to that of children without these special needs. Primary care pediatricians providing best practices for vehicle safety should consider the unique riding experience and risk of injury among children with special health care needs likely to affect behavior.