A Patient-Centered Multidisciplinary Medical HOME for Persons With Intellectual and Developmental Disabilities.

Innovative models of medical and psychiatric care are necessary to address the complex needs of individuals with intellectual and developmental disabilities (IDD), including autism. This article describes a subspecialty medical home program that has provided accessible, comprehensive, coordinated, patient- and family-centered care for this high-needs, underserved patient population. For more than two decades, the University of Utah Huntsman Mental Health Institute Neurobehavior HOME Program (HOME) has provided primary and behavioral health care for individuals with IDD across their lifespan. Program highlights include integrated medical and behavioral health, a unique funding structure, innovative care delivery, and case management. HOME is a clinical setting as well as a Medicaid managed care plan that has blended medical and psychiatric funding streams. This unique funding structure has demonstrated the fiscal sustainability of focusing care on preventive and proactive management of health concerns and responding to crises using a coordinated and comprehensive approach. Rethinking health care delivery and adopting models that are both financially sustainable and provide quality care to this vulnerable population is greatly needed.

Promoting the Participation of Children and Adolescents With Disabilities in Sports, Recreation, and Physical Activity.

The benefits of physical activity are likely universal for all children, including children and adolescents with disabilities (CWD). The participation of CWD in physical activity, including adaptive or therapeutic sports and recreation, promotes inclusion, minimizes deconditioning, optimizes physical functioning, improves mental health as well as academic achievement, and enhances overall well-being. Despite these benefits, CWD face barriers to participation and have lower levels of fitness, reduced rates of participation, and a higher prevalence of overweight and obesity compared with typically developing peers. Pediatricians and caregivers may overestimate the risks or overlook the benefits of physical activity in CWD, which further limits participation. Preparticipation evaluations often include assessment of health status, functional capacity, individual activity preferences, availability of appropriate programs, and safety precautions. Given the complexity, the preparticipation evaluation for CWD may not occur in the context of a single office visit but rather over a period of time with input from the child's multidisciplinary team (physicians, coaches, physical education teachers, school nurses, adaptive recreation specialists, physical and occupational therapists, and others). Some CWD may desire to participate in organized sports to experience the challenge of competition, and others may prefer recreational activities for enjoyment. To reach the goal of inclusion in appropriate physical activities for all children with disabilities, child, family, financial, and societal barriers to participation need to be identified and addressed. Health care providers can facilitate participation by encouraging physical activity among CWD and their families during visits. Health care providers can create "physical activity prescriptions" for CWD on the basis of the child's preferred activities, functional status, need for adaptation of the activity and the recreational opportunities available in the community. This clinical report discusses the importance of participation in sports, recreation, and physical activity for CWD and offers practical suggestions to health care providers.

Ratings of Physician Communication by Caregivers of Hospitalized Children With and Without Autism.

BACKGROUND AND OBJECTIVES: To investigate caregivers' perceptions of physician communication and hospital ratings for hospitalized children with and without autism and assess associations between perceived quality of physician communication and overall ratings of the hospital. METHODS: We studied survey data from caregivers of 543 patients with autism compared with a 2:1 matched control sample of 1086 patients with similar characteristics but without autism from a single children's hospital. We analyzed survey items related to physician communication and hospital ratings from the Consumer Assessment of Healthcare Physicians and Systems Child Hospital Survey. We constructed multivariable regression models to examine the relationship between caregiver-perceived physician communication and caregivers' overall ratings of the hospital. RESULTS: A similar proportion of caregivers of children with and without autism reported that doctors "always" listened carefully to them (71.4% vs 74.3%; adjusted prevalence ratio 0.96; 95% confidence interval 0.90-1.03) and "always" treated them with respect (80.0% vs 84.1%; adjusted prevalence ratio 0.95; 95% confidence interval 0.90-1.00). Caregivers of children with autism were less likely to "definitely" recommend the hospital (87.0% vs 92.3%; adjusted prevalence ratio 0.94; 95% confidence interval 0.91-0.98). All items related to caregiver-perceived physician communication were associated with the highest hospital rating and the highest recommendation of the hospital in both groups. CONCLUSIONS: When matched on the basis of medical and social factors, caregivers of children with and without autism reported similar frequencies of highest-quality physician communication. Improvement of physician communication with caregivers of medically and socially complex children with and without autism may improve caregivers' overall ratings of the hospital.

Improving Autism Screening and Referrals With Electronic Support and Evaluations in Primary Care.

BACKGROUND: Universal screening for autism promotes early evidence-based treatment. However, many children are not screened, and screened children are often not referred for autism evaluation. METHODS: We implemented process changes in 3 phases: phase 1, changing the screening instrument and adding decision support; phase 2, adding automatic reminders; and phase 3, adding a referral option for autism evaluations in primary care. We analyzed the proportion of visits with autism screening at 2 intervention clinics before and after implementation of process changes versus 27 community clinics (which received only automatic reminders in phase 2) with χ2 test and interrupted time series. We evaluated changes in referral for autism evaluation by calculating the rate ratio for referral. RESULTS: In 12 233 visits over 2 years (baseline and phased improvements), autism screening increased by 52% in intervention clinics (58.6%-88.8%; P < .001) and 21% in community clinics (43.4%-52.4%; P < .001). In phase 1, interrupted time series trend for screening in intervention clinics increased by 2% per week (95% confidence interval [CI]: 1.1% to 2.9%) and did not increase in community clinics. In phase 2, screening in the community clinics increased by 0.46% per week (95% CI: 0.03% to 0.89%). In phase 3, the intervention clinic providers referred patients for diagnostic evaluation 3.4 times more frequently (95% CI: 2.0 to 5.8) than at baseline. CONCLUSIONS: We improved autism screening and referrals by changing the screening instrument, adding decision support, using automatic reminders, and offering autism evaluation in primary care in intervention clinics. Automatic reminders alone improved screening in community clinics.

Patient-Centered Outcomes in an Interdisciplinary Clinic for Complex Children with Autism.

OBJECTIVE: To compare the perspectives of caregivers of children with autism receiving care at the Neurobehavior Healthy Outcomes Medical Excellence (HOME) Program, an interdisciplinary clinic that provides primary care and behavioral/mental health services for patients with autism and other developmental disabilities, with those responding to the 2016 National Survey of Children's Health (NSCH). We focused on ratings related to shared decision-making, care coordination, family-centered care, and care within a medical home. METHODS: We administered a subset of items from the 2016 NSCH to caregivers of children with autism enrolled in HOME and compared responses with the same items from a nationally representative group of caregivers of children with autism who completed the 2016 NSCH. We compared the proportions that reported receiving shared decision-making, care coordination, family-centered care, care within a medical home, and unmet needs among the 2 study groups using Poisson regression, controlling for age, sex, race/ethnicity, payor, autism severity, and intellectual disability (ID). RESULTS: Compared with the NSCH cohort (n = 1151), children enrolled in HOME (n = 129) were older, more often female, had severe autism, and had co-occurring ID. Caregivers perceived that children receiving care within HOME more often received family-centered, coordinated care within a medical home compared with a national sample of children with autism. HOME enrollees also reported increased access to behavioral treatments and adult transition services with less financial burden compared with the national sample. CONCLUSION: An interdisciplinary clinic model may best serve children with autism, especially those with higher severity symptoms and co-occurring conditions.

Primary Care Autism Screening and Later Autism Diagnosis.

OBJECTIVES: To describe the proportion of children screened by the Modified Checklist for Autism in Toddlers (M-CHAT), identify characteristics associated with screen completion, and examine associations between autism spectrum disorder (ASD) screening and later ASD diagnosis. METHODS: We examined data from children attending 18- and 24-month visits between 2013 and 2016 from 20 clinics within a health care system for evidence of screening with the M-CHAT and subsequent coding of ASD diagnosis at age >4.75 years. We interviewed providers for information about usual methods of M-CHAT scoring and ASD referral. RESULTS: Of 36 233 toddlers, 73% were screened and 1.4% were later diagnosed with ASD. Hispanic children were less likely to be screened (adjusted prevalence ratio [APR]: 0.95, 95% confidence interval [CI]: 0.92-0.98), and family physicians were less likely to screen (APR: 0.12, 95% CI: 0.09-0.15). Compared with unscreened children, screen-positive children were more likely to be diagnosed with ASD (APR: 10.3, 95% CI: 7.6-14.1) and were diagnosed younger (38.5 vs 48.5 months, P < .001). The M-CHAT's sensitivity for ASD diagnosis was 33.1%, and the positive predictive value was 17.8%. Providers routinely omitted the M-CHAT follow-up interview and had uneven referral patterns. CONCLUSIONS: A majority of children were screened for ASD, but disparities exist among those screened. Benefits for screen-positive children are improved detection and younger age of diagnosis. Performance of the M-CHAT can be improved in real-world health care settings by administering screens with fidelity and facilitating timely ASD evaluations for screen-positive children. Providers should continue to monitor for signs of ASD in screen-negative children.

Health Care Use and Spending of Pediatric Patients With an Intellectual or Developmental Disability.

BACKGROUND: Health care costs and utilization for those with an intellectual or developmental disability (IDD) have been shown to be higher than the general population. OBJECTIVE: To investigate the services that contribute to higher costs and utilization among noninstitutionalized children with an IDD. DESIGN: Matched case-control secondary analysis of the 2000-2017 Medical Expenditure Panel Survey. Pediatric (age 0-21) patients with an IDD were matched to non-IDD subjects. Health care utilization and costs were evaluated with zero-inflated negative binomial regressions and generalized linear models, respectively. MEASURES: Outcome measures included high-acuity health care utilization [ie, emergency department (ED) visits and hospital admissions], and cost outcomes for total spending, ED use, hospitalization, medications, office visits, home health, and physical therapy. RESULTS: There was no statistical difference in utilization of EDs among the 2 groups though subjects with an IDD showed more hospitalizations than their matched cohort (incidence rate ratios=1.63, P=0.00). Total health care spending was higher among patients with an IDD (coefficient=$5831, P=0.00). Pediatric spending was higher in all measures except for ED. The biggest discrepancies in spending were seen in home health (coefficient=$2558, P=0.00) and outpatient visits (coefficient=$1180, P=0.00). CONCLUSIONS: Pediatric patients with an IDD had higher health care spending and utilization than non-IDD subjects in all categories except for ED use.

Cost and Utilization with Enrollment in a Medical Home for Individuals with an Autism Spectrum Disorder and/or Intellectual Disability.

Individuals with intellectual and/or developmental disabilities (IDD) tend to incur high health care costs. The Neurobehavior HOME Program (HOME) is an interdisciplinary program that cares for this population. This study will evaluate the health care costs and utilization of individuals during their first year of enrollment in HOME and identify factors associated with higher cost and utilization. Secondary analysis of claims data were used to identify cost and utilization. Generalized linear regression and negative binomial regression were used to calculate utilization and cost. The mean total cost of care during the initial year of enrollment (n=239) per individual was $11,095.87, with $4,640.83 attributed to inpatient care. Those with diabetes (p=0.01), epilepsy (p=0.02), or mood disorders (p=0.03) were more likely to be admitted to the hospital and utilize the emergency department. These findings will enable systems and payers to better construct health care delivery reforms for this high-need population.

Brief Report: Pediatrician Perspectives Regarding Genetic Evaluations of Children with Autism Spectrum Disorder.

Despite current guidelines, few children with autism spectrum disorder (ASD) receive genetic evaluations. We surveyed Utah pediatricians to characterize the knowledge, beliefs, current practices and perceived barriers of pediatricians regarding genetic evaluation of children with ASD. We found over half lacked knowledge of current guidelines and many held beliefs about genetic evaluation that did not align with guidelines. Barriers were lack of insurance coverage for genetic evaluation/testing and long wait times to see geneticists. Pediatricians with beliefs aligned with guidelines and those aware of the role of genetic counselors were more likely to adhere to guidelines. Efforts to educate pediatricians are needed along with system level solutions regarding availability of geneticists and reimbursement for genetic testing.

A Pilot Project Using Pediatricians as Initial Diagnosticians in Multidisciplinary Autism Evaluations for Young Children.

OBJECTIVES: Wait times for autism spectrum disorder (ASD) evaluations are long, thereby delaying access to ASD-specific services. We asked how our traditional care model (requiring all patients to see psychologists for ASD diagnostic decisions) compared to an alternative model that better utilizes the available clinicians, including initial evaluation by speech, audiology, and pediatrics (trained in Level 2 autism screening tools). Pediatricians could diagnose immediately if certain about diagnosis but could refer uncertain cases to psychology. Accuracy and time to diagnosis, charges, and parent satisfaction were our main outcome measures. METHODS: Data were gathered through record extraction (n = 244) and parent questionnaire (n = 57). We compared time to diagnosis, charges, and parent satisfaction between traditional and alternative models. Agreement between pediatrician and psychologist diagnoses was examined for a subset (n = 18). RESULTS: The alternative model's time to diagnosis was 44% faster (85 vs 152 d) and 33% less costly overall. Diagnostic agreement was 93% for children with ASD diagnoses and 100% for children without ASD diagnoses. Pediatricians expressed higher diagnostic certainty about children with higher levels of ASD symptoms. Parents reported no differences in high satisfaction with experiences, family-centered care, and shared decision making. CONCLUSION: Efficient use of available clinicians with additional training in Level 2 autism screening resulted in improvements in time to diagnosis and reduced charges for families. Coordination of multidisciplinary teams makes this possible, with strategic sequencing of patients through workflow. Flexibility was key to not only allowing pediatricians to refer uncertain cases to psychology for diagnosis but also allowing for diagnosis by a pediatrician when symptomatic presentation clearly met diagnostic criteria.

Brief Report: The Prevalence of Neurofibromatosis Type 1 among Children with Autism Spectrum Disorder Identified by the Autism and Developmental Disabilities Monitoring Network.

Neurofibromatosis type 1 (NF1) is an inherited neurocutaneous disorder associated with neurodevelopmental disorders including autism spectrum disorder (ASD). The frequency of ASD/NF1 co-occurrence has been subject to debate since the 1980s. This relationship was investigated in a large population-based sample of 8-year-old children identified with ASD (N = 12,271) by the Centers for Disease Control and Prevention's Autism and Developmental Disabilities Monitoring (ADDM) Network. Twenty-two (1-in-558) children with ASD had diagnosed NF1, exceeding NF1 general population estimates by four to five fold. Children with ASD/NF1 versus ASD without NF1 were significantly less likely to receive a community-based ASD diagnosis (p = 0.04) and understand non-verbal communication (p = 0.001). These findings underscore the importance of including social-communication ability among relevant developmental concerns in children with NF1.

Improving Early Identification and Ongoing Care of Children With Autism Spectrum Disorder.

BACKGROUND AND OBJECTIVE: Poor adherence to recommended screening for autism spectrum disorder (ASD) and pediatricians' lack of confidence in providing care for children with ASD reflect quality gaps in primary care. This study aimed to increase the proportion of toddlers screened for ASD and improve physicians' self-efficacy in providing care to children with ASD. METHODS: Twenty-six Utah primary care practices participated in a 3 to 6 month learning collaborative (LC) to improve identification and ongoing care of children with ASD. Monthly chart audits assessed whether an ASD screening tool was administered at 18- and 24-month visits. Physicians completed pre-LC and post-LC surveys to assess changes in self-efficacy in providing care and changes in perceived barriers to implementation of screening and caring for children with ASD. RESULTS: Before the LC, 15% of 18- and 24-month visits had documented ASD screening, compared with 91% during the last month of the LC (P < .001). This rate of ASD screening was sustained 4 years after the LC by most practices. Compared with survey responses before the LC, physicians reported significant improvement in their ability to care for children with ASD and decreases in their perceived barriers to screening and caring for children with ASD. CONCLUSIONS: The LC was effective in increasing and sustaining recommended ASD screening of toddlers and improving physicians' perceived self-efficacy in caring for children with ASD. Improving primary care screening, skills, and knowledge may improve the timing of diagnosis, initiation of treatment, quality of care, and outcomes for children with ASD.

Antipsychotic Use and Metabolic Monitoring in Individuals with Developmental Disabilities Served in a Medicaid Medical Home.

This study describes antipsychotic use and metabolic monitoring rates among individuals with developmental disabilities enrolled in a subspecialty medical home (N = 826). Four hundred ninety-nine participants (60.4 %) were taking antipsychotics, which was associated with male gender (p = 0.01), intellectual disability with and without autism spectrum disorder (p = 0.001 and p = 0.04, respectively), and inversely associated with the youngest and oldest age categories (p = 0.001 and p = 0.04, respectively). Among those taking antipsychotics, annual metabolic monitoring rates ranged from 89 % (lipids) to 99 % (weight). Age was positively associated with glucose (p < 0.001) and lipid monitoring (p < 0.001). Adult participants with dyslipidemia (p < 0.01), prediabetes/diabetes (p = 0.04), and hypertension (p = 0.02) were significantly more likely to obtain lipid monitoring. These values exceeded previously reported rates suggesting the importance of an integrated care model.

A Comparison of Ambulatory Care Sensitive Hospitalizations Among Children With and Without Autism Spectrum Disorder.

OBJECTIVE: To compare the prevalence of hospitalizations for ambulatory care sensitive conditions (ACSC) in children with and without autism spectrum disorder (ASD) and to compare inpatient health care utilization (total charges and length of stay) for the same conditions in children with and without ASD. METHODS: The 2009 Kids' Inpatient Database was used to examine hospitalizations for ACSC in children within 3 cohorts: those with ASD, those with chronic conditions (CC) without ASD, and those with no CC. RESULTS: The proportion of hospitalizations for ACSC in the ASD cohort was 55.9%, compared with 28.2% in the CC cohort and 22.9% in the no-CC cohort (P < .001). Hospitalized children with ASD were more likely to be admitted for a mental health condition, epilepsy, constipation, pneumonia, dehydration, vaccine-preventable diseases, underweight, and nutritional deficiencies compared with the no-CC cohort. Compared with the CC cohort, the ASD cohort was more likely to be admitted for mental health conditions, epilepsy, constipation, dehydration, and underweight. Hospitalized children with ASD admitted for mental health conditions had significantly higher total charges and longer LOS compared with the other 2 cohorts. CONCLUSIONS: The proportion of potentially preventable hospitalizations is higher in hospitalized children with ASD compared with children without ASD. These data underscore the need to improve outpatient care of children with ASD, especially in the areas of mental health care and seizure management. Future research should focus on understanding the reasons for increased inpatient health care utilization in children with ASD admitted for mental health conditions.

Brief report: independent validation of autism spectrum disorder case status in the Utah Autism and Developmental Disabilities Monitoring (ADDM) Network Site.

An independent validation was conducted of the Utah Autism and Developmental Disabilities Monitoring Network's (UT-ADDM) classification of children with autism spectrum disorder (ASD). UT-ADDM final case status (n = 90) was compared with final case status as determined by independent external expert reviewers (EERs). Inter-rater reliability (ICC = 0.84), specificity [0.83 (95 % CI 0.74-0.90)], and sensitivity [0.99 (95 % CI 0.96-1.00)] were high for ASD case versus non-case classification between UT-ADDM and EER. At least one EER disagreed with UT-ADDM on ASD final case status on nine out of 30 records; however, all three EERs disagreed with UT-ADDM for only one record. Findings based on limited data suggest that children with ASD as identified by UT-ADDM are consistently classified as ASD cases by independent autism experts.

Screening children with neurofibromatosis type 1 for autism spectrum disorder.

Autism spectrum disorder (ASD) is reported to be increased in neurofibromatosis type 1 (NF1), but it's unknown if ASD screening tools are sensitive and specific for NF1. This study compared the rate at which children with NF1 screen-positive for two ASD screening tools [Modified Checklist for Autism in Toddlers (M-CHAT) and Childhood Autism Spectrum Test (CAST)] to the screen-positive rate of the general population. A retrospective cross-sectional observational design to investigate the association between children with NF1 and at risk status for ASD was used. Medical records of children between 16 months and 11 years of age seen in an NF Clinic were reviewed for an ASD screening questionnaire. There were no statistically significant differences in the screen-positive rate for ASD in NF1 compared to published controls, but mean CAST scores were higher in NF1.

Addressing sexuality in youth with autism spectrum disorders: current pediatric practices and barriers.

OBJECTIVE: Research on adolescents and young adults with autism spectrum disorders (ASDs) has focused on promoting independence and optimizing quality of life, yet the areas of sexual development and sexuality has been largely neglected. The American Academy of Pediatrics encourages pediatricians to address sexuality issues in youth with disabilities to foster healthy development and minimize negative consequences. However, it is unclear to what extent pediatricians address sexuality issues in this population. METHODS: Two hundred three pediatricians who regularly care for youth with ASD completed an online survey about their experiences in providing sexuality-related care to families and youth with ASD. RESULTS: Respondents discussed an average of 10.9 of 26 sexuality topics with all families at least once during routine visits. Experience in caring for youth with ASD correlated positively with the number of sexuality-related topics discussed and with self-reported comfort discussing sexuality with parents of youth with ASD. The most common barriers to providing comprehensive sexuality-related care to youth with ASD included logistical barriers, pediatrician and parent discomfort, lack of training, and absence of information and materials to help pediatricians address sexuality in this population. CONCLUSIONS: Although most pediatricians acknowledged the importance of addressing sexuality-related issues with youth with ASD and their families, several important sexuality-related topics were rarely discussed due to a variety of perceived barriers. Implications and recommendations are discussed.

Treating the whole person with autism: the proceedings of the Autism Speaks National Autism Conference.

The identification of autism spectrum disorders has increased dramatically over the past decade, with the latest estimates indicating prevalence as high as 1 in 54 boys. There is greater awareness of medical conditions that co-occur with autism and expansion of treatment options. Closer scrutiny has led to refinement of the diagnostic criteria, and there have been advances in genetics examining potential causal factors. Transition to adulthood is an area of growing concern, and professionals and families require guidance on this issue. This article summarizes the proceedings of the Autism Speaks conference on Treating the Whole Person with Autism: Care across the Lifespan. The conference was organized with the intent of providing a forum for both families and professionals to learn about the most current research in the field. Dr. Sue Swedo provides important background information regarding the changes in the diagnostic criteria for autism spectrum disorders. She particularly deals with the concerns of individuals and families that their autism diagnosis may change. Recommendations for genetic testing and its interpretation are provided by Dr. David Miller. His discussion helps make sense of the utility of genetic testing for ASD, along with demonstration of the complexity of determining which genetic factors are doing what and through which pathways. Dr. Jeremy Veenstra-VanderWeele provides useful background information on how medicines are initially identified and for what purpose and goes on to describe the present and future treatments in pharmacology. Medical issues are addressed by Dr. Paul Carbone, especially the coordination of comprehensive services through the medical home model of care. Dr. Julie Lounds Taylor concludes with guidance on preparation for adulthood, a topic of great importance to families as their child matures and for the professionals who will help guide this transition.

Moving from research to practice in the primary care of children with autism spectrum disorders.

Autism spectrum disorders (ASD), once thought rare, are now commonly encountered in clinical practice. Academic pediatricians may be expected to teach medical students and pediatric residents about ASD, but most likely received limited exposure to ASD during their training. In recent years, research that informs the clinical guidance provided to pediatricians regarding surveillance, screening, and ongoing management of children with ASD has accelerated. By 24 months of age, children with ASD exhibit delays across multiple domains of development, yet the diagnosis is frequently made much later. Careful developmental surveillance lowers the age of identification of children with ASD. Several screening tools appropriate for use in primary care settings can aid in early identification. Improved surveillance and screening is of benefit because early intensive behavioral intervention has the potential to improve the developmental trajectory of children with ASD. Providing appropriate medical care for children with ASD improves both child and family outcomes. Recent research regarding sleep disturbances, gastrointestinal problems, and epilepsy in children with ASD has led to clinical pathways to evaluate and address these issues within the context of primary care. By being aware of and disseminating these research findings, academic pediatricians can help future and current clinicians improve the care of children with ASD.

Parent and pediatrician perspectives regarding the primary care of children with autism spectrum disorders.

Parents of children with autism spectrum disorders (ASD) (n = 144) and primary care providers (PCPs) (n = 144) completed similar surveys assessing the ability of the PCP to address ASD-specific needs. Parents also rated their PCP's ability to deliver family-centered care. A majority of parents rated their PCP's ability as "not good" in addressing 14 of 17 ASD-specific needs, while a majority of PCPs rated themselves as "good" in addressing 10 of 17 areas. On 7 of 17 items, parents rated their PCPs lower than PCPs rated themselves. Parents who reported receiving family-centered care were more likely to rate the PCP's ability to meet ASD specific needs as "good". Both parents and PCPs identified areas for improvement in caring for children with ASD.