Developmental Monitoring and Referral for Low-Income Children Served by WIC: Program Development and Implementation Outcomes.

OBJECTIVE: To develop, implement, and assess implementation outcomes for a developmental monitoring and referral program for children in the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC). METHODS: Based on Centers for Disease Control and Prevention's Learn the Signs. Act Early. campaign, the program was developed and replicated in two phases at 20 demographically diverse WIC clinics in eastern Missouri. Parents were asked to complete developmental milestone checklists for their children, ages 2 months to 4 years, during WIC eligibility recertification visits; WIC staff referred children with potential concerns to their healthcare providers for developmental screening. WIC staff surveys and focus groups were used to assess initial implementation outcomes. RESULTS: In both phases, all surveyed staff (n = 46) agreed the program was easy to use. Most (≥ 80%) agreed that checklists fit easily into clinic workflow and required ≤ 5 min to complete. Staff (≥ 55%) indicated using checklists with ≥ 75% of their clients. 92% or more reported referring one or more children with potential developmental concerns. According to 80% of staff, parents indicated checklists helped them learn about development and planned to share them with healthcare providers. During the second phase, 18 of 20 staff surveyed indicated the program helped them learn when to refer children and how to support parents, and 19 felt the program promoted healthy development. Focus groups supported survey findings, and all clinics planned to sustain the program. CONCLUSIONS: Initial implementation outcomes supported this approach to developmental monitoring and referral in WIC. The program has potential to help low-income parents identify possible concerns and access support.

The impact of the medical home on access to care for children with autism spectrum disorders.

Children with autism spectrum disorders (ASD) experience difficulty accessing health care services. Using parent-reported data from the 2009-2010 National Survey of Children with Special Health Care Needs, we examined whether having a medical home reduces unmet need for specialty care services for children with ASD (n = 3,055). Descriptive statistics and Chi square tests identified sample characteristics and examined the relationship between unmet needs and a standardized measure of medical home. Logistic regression models explored the individual impact of demographic, condition-specific and medical home variables on unmet need. Parents reported that nearly all children had a need for specialty services, 36 % had an unmet need, and 23.9 % had a medical home. Children who had fewer unmet needs were more likely to have received family-centered and coordinated care through a medical home, and this relationship remained significant even when demographic and condition-specific variables were taken into account. These findings suggest ways to improve access to care for children with ASD through enhanced family-centered and coordinated care within the medical home.

Health care transition services for youth with autism spectrum disorders.

OBJECTIVE: Little is known about accessibility to health care transition (HCT) services (HCT) for youth with autism spectrum disorders (ASD). This study examined how often youth with ASD receive HCT services and how access varied by individual, family, and health system characteristics. METHOD: Questionnaires were completed by 101 parents of youth with ASD (ages 12-17 years) enrolled in a national online autism registry. Descriptive statistics and bivariate analysis were used to examine a composite HCT variable and its components. RESULTS: Fewer than 15% of youth received HCT services. Although 41% received at least 1 HCT discussion, only 3% received all 3. One-quarter had a discussion with their health care provider about transitioning to an adult provider, adult health care needs, or insurance retention, and 31% of providers encouraged youth to take on more responsibilities. Most caregivers reported not needing 1 or more of the discussions. RESULTS varied significantly when the sample was divided by age, with older youth more likely to have received transition services than younger adolescents. CONCLUSIONS: These findings indicate a significant disparity in access to HCT services for youth with ASD. Further research is needed to understand this disparity and develop interventions to improve HCT both for youth with ASD and those with other disabling health conditions. Additionally, many caregivers do not recognize the importance of HCT services. Education and training for caregivers, youth, and providers is essential to ensure all parties are working together to address transition issues early and often.

Multisystemic therapy for disruptive behavior problems in youths with autism spectrum disorders: a progress report.

Youths with autism spectrum disorders (ASD) often engage in serious disruptive behaviors that interfere with their ability to successfully manage day-to-day responsibilities and contribute to relationship problems with caregivers, peers, and teachers. Effective treatments are needed to address the factors linked with disruptive behavior problems in this population of youths. Multisystemic therapy (MST) is a comprehensive family- and community-based treatment approach that has been effective with other difficult-to-treat populations of youths and holds promise for youths with ASD. In this article, we review the broad range of factors associated with disruptive behaviors among youths with ASD and discuss how MST interventions can be adapted to address those factors. We also present a framework for our adaptation of the MST model for youths with ASD. This framework includes a recently completed pilot study as well as an ongoing efficacy trial that together have served to identify key interventions for our adaptation of the MST model.

The relationship between the medical home and unmet needs for children with autism spectrum disorders.

The purpose of this study was to examine the relationship between having access to a medical home and unmet needs for specialty care services for children with autism spectrum disorders (ASD). Parents of children enrolled in a national autism registry were invited to complete an online Access to Care Questionnaire. The resulting sample consisted of 371 parents-child dyads. Bivariate and hierarchical regression analyses were conducted to determine whether having a medical home was associated with the number of unmet needs for specialty care. Less than one in five children with ASD had a medical home (18.9%). Nearly all parents reported that their child had a personal doctor or nurse as well as a usual source of care, but less than one-third received coordinated care (29.9%) and less than one-half received family-centered care (47.1%). Many children had unmet needs (63%), and the highest unmet need was for behavioral therapy. Having a medical home was associated with fewer unmet specialty care needs, even after demographic, child and family characteristics were taken into account. Children with ASD who have a medical home are more likely to have adequate access to needed services. Unfortunately, relatively few children have a medical home that includes family-centered and coordinated care. Enhancements in the delivery of primary care for children with ASD may make a real difference in access to needed specialty care services, potentially improving child and family outcomes.

Disparities in transition planning for youth with autism spectrum disorder.

OBJECTIVE: Little is known about accessibility to health care transition (HCT) services for youth with autism spectrum disorder (ASD). This study expands our understanding by examining the receipt of HCT services in youth with ASD compared with youth with other special health care needs (OSHCN). METHODS: We used the 2005-2006 National Survey of Children with Special Health Care Needs to examine receipt of HCT services for youth (aged 12-17 years) with ASD and youth with OSHCN. Logistic regression analyses explored whether individual, family, or health system factors were associated with receipt of HCT services for youth with ASD. RESULTS: Whereas half of youth with OSHCN received HCT services, less than a quarter of youth with ASD did. Only 14% of youth with ASD had a discussion with their pediatrician about transitioning to an adult provider, less than a quarter had a discussion about health insurance retention, and just under half discussed adult health care needs or were encouraged to take on appropriate responsibility. Logistic regression analyses indicated that having a developmental disability or multiple health conditions in addition to ASD and quality of health care were strong predictors of HCT, whereas demographic and family variables accounted for little variance. CONCLUSIONS: Youth with ASD experience disparities in access to HCT services. Youth with comorbid conditions are at greatest risk for poor access to HCT services and increased quality of care has a positive effect. Research is needed to understand barriers to care and develop policy and practice guidelines tailored for youth with ASD.

Consultative care coordination through the medical home for CSHCN: a randomized controlled trial.

The purpose of this study was to examine the impact of a care coordination intervention aimed at improving the medical home for children with special health care needs (CSHCN). 100 CSHCN referred by a Medicaid managed care plan were randomly assigned to a care coordination intervention or to a wait list comparison group that received standard care. For the intervention group, a care coordinator supported the medical home by consulting with primary care providers at multiple practices to develop an integrated, individualized plan to meet child and family needs. During the second phase of the study, the wait list comparison group received the 6-month intervention. At the end of 12 months, the two groups were combined to examine within subject differences (n = 61). Compared to the control group, participants in the initial intervention group reported a decreased need for information and improved satisfaction with mental health services and specialized therapies. This effect was replicated when the wait list control group received the intervention. Additional benefits were observed in the within subject analysis, including a decline in unmet needs, improved satisfaction with specialty care and care coordination, and improved ratings of child health and family functioning. This intervention improved outcomes for CSHCN and their families by supporting the efforts of primary care physicians to provide comprehensive and coordinated care through the medical home. The consulting care coordinator may provide an efficient and cost effective approach to enhancing the quality of care for CSHCN.

Psychotropic medication use among children with autism spectrum disorders enrolled in a national registry, 2007-2008.

Patterns of current psychotropic medication use among 5,181 children with autism spectrum disorders (ASD) enrolled in a Web-based registry were examined. Overall, 35% used at least one psychotropic medication, most commonly stimulants, neuroleptics, and/or antidepressants. Those who were uninsured or exclusively privately insured were less likely to use >or=3 medications than were those insured by Medicaid. Psychiatrists and neurologists prescribed the majority of psychotropic medications. In multivariate analysis, older age, presence of intellectual disability or psychiatric comorbidity, and residing in a poorer county or in the South or Midwest regions of the United States increased the odds of psychotropic medication use. Factors external to clinical presentation likely affect odds of psychotropic medication use among children with ASD.

Diagnostic and assessment findings: a bridge to academic planning for children with autism spectrum disorders.

Increasing numbers of children diagnosed and treated for autism spectrum disorders (ASDs) has impacted both neuropsychologists and educators. Though both play key evaluative and treatment roles, there is no available method or process in place enabling the translation of the neuropsychological report recommendations into a format educational teams can easily use, leading to a gap between neuropsychological recommendations and educational planning. In the following, we review the areas evaluated by a neuropsychologist when assessing a child with an ASD, discuss the domains targeted by educational teams when designing an educational plan, and then present a process that has met with some success creating a "bridge" between the diagnostic/assessment process and the subsequent academic planning. Though presented in the context of ASD, the process described can be used by neuropsychologists for various populations to facilitate partnerships with educators that result in improved care for the child.

Development and validation of a measure of dysmorphology: useful for autism subgroup classification.

Autism spectrum disorders (ASD) comprise a class of neurodevelopmental disorders that can originate from a variety of genetic and environmental causes. To delineate autism's heterogeneity we have looked for biologically-based phenotypes found in consistent proportions of ASD individuals. One informative phenotype is that of generalized dysmorphology, based on whole body examinations by medical geneticists trained in the nuances of anomalous embryologic development. We identified a need for a dysmorphology measure that could be completed by medical clinicians not extensively trained in dysmorphology that would still retain the level of sensitivity and specificity of the comprehensive dysmorphology examination. Based on expert-derived consensus dysmorphology designation of 222 autism patients and a classification validation study of 30 subjects by four dysmorphologists, we determined that dysmorphology designations based on body areas provided superior inter-rater reliability. Using 34 body area designations, we performed a classification and regression tree (CART) analysis to construct a scoring algorithm. Compared to the consensus classification, the model performed with 81% sensitivity and 99% specificity, and classification of a replication dataset of 31 ASD individuals performed well, with 82% sensitivity and 95% specificity. The autism dysmorphology measure (ADM) directs the clinician to score 12 body areas sequentially to arrive at a determination of "dysmorphic" or "nondysmorphic." We anticipate the ADM will permit clinicians to differentiate accurately between dysmorphic and nondysmorphic individuals-allowing better diagnostic classification, prognostication, recurrence risk assessment, and laboratory analysis decisions-and research scientists to better define more homogeneous autism subtypes.

Oromotor and communication findings in joubert syndrome: further evidence of multisystem apraxia.

This study provides descriptive information in the areas of oromotor abilities and communication to better understand the spectrum of disability in individuals with Joubert syndrome. Participants included 21 individuals with the diagnosis of Joubert syndrome (mean age 10.45 years). Participants completed oromotor and receptive language measures. In addition, all of the participants' speech and gesture communication from a narrative task was coded and analyzed from videotape. Caregivers reported the participants' level of fine and gross motor function. The results show that individuals with Joubert syndrome exhibit a distinct oromotor pattern consistent with verbal and lingual apraxias. Despite significant motor skills deficits and oculomotor apraxia, persons with Joubert syndrome produced gestures when communicating, and those whose speech was less intelligible used a higher rate of gesture compared with those with greater verbal output. These findings suggest a new form of apraxia not previously described in the condition and are consistent with previous research that suggests that persons with Joubert syndrome typically do not exhibit classic symptoms of autism spectrum disorder.

Parenting stress and its relationship to the behavior of children with Joubert syndrome.

This study describes the relationship between parenting stress and behavior in children with Joubert syndrome, a rare genetic neurodevelopmental disorder. Parents (N = 43) reported severely impaired child adaptive behaviors. Most children did not show maladaptive behaviors, but a subset of approximately 20% displayed significant problems in areas such as inattention, overactivity, social withdrawal, and atypical behaviors. Mothers (59%) and fathers (40%) reported elevated levels of parenting stress. A hierarchical regression, including demographics, adaptive behavior, and maladaptive behavior, predicted 67% of the variance in mothers' stress and 40% of the variance in fathers' stress. Maladaptive behaviors uniquely contributed to maternal and paternal stress. The child's adaptive behavior level contributed significantly to parenting stress for mothers but not for fathers. Findings provide a better understanding of the impact of child behavior on parents caring for a child with Joubert syndrome.

Comprehensive primary care for children with special health care needs in rural areas.

OBJECTIVE: Most research on comprehensive primary care interventions for children with chronic health conditions has been conducted in large urban areas, where child health and related services are readily available. The purpose of this study was to evaluate the feasibility and impact of a medical home demonstration project in a more rural part of the country. METHODS: Fifty-one parents of children with special health care needs participated in a pre-/posttreatment assessment of a program designed to enhance comprehensive and coordinated care. Participants were recruited from 3 primary care practices in a central Midwest state and remained in the program for approximately 12 months. RESULTS: Parents reported significant increases in satisfaction with care coordination and access to mental health services after the intervention. They also noted decreases in family needs, caregiver strain, parents' missed work days, children's school absences, and utilization of ambulatory services. Satisfaction with primary care declined slightly but remained in the "very good" range. Families of children with more complex conditions were more likely to report a decrease in needs after intervention, but other factors, such as geographic location or socioeconomic status, were not related to key outcome variables. CONCLUSIONS: Comprehensive care has a positive effect on children with chronic health conditions and their families, including those who live in more rural areas. Additional study is needed to learn more about rural service delivery strategies that promote implementation of this approach in general practice.

Childhood-onset multiple sclerosis and mood disorders: a case study.

Multiple Sclerosis (MS) is rare in children. Little research exists regarding emotional and behavioral disorders in childhood-onset MS, despite the occurrence of such problems in adults with MS. This paper describes the cognitive and behavioral characteristics of a boy diagnosed with MS at age 9 and mood disorder at age 10. He displayed no cognitive or behavioral problems prior to the onset of physical symptoms of MS. Three years after diagnosis, this child showed persistent problems with speed of processing, visual-motor skills, and parent and teacher-reported executive functioning. In addition, he had difficulties with emotional lability, behavioral disinhibition, depression, and social interaction. As with adults, children with MS may be at increased risk for mood disorder compared to their peers. Mood disorders in children with MS are likely to be multiply determined, although the specific causal mechanisms are unknown.

Primary care supports for children with chronic health conditions: identifying and predicting unmet family needs.

OBJECTIVE: To examine unmet needs among families of children with chronic health conditions treated in primary care settings and to identify predictors of these needs. METHOD: Primary care physicians referred 83 caregivers of children with chronic health conditions. Mothers completed the Family Needs Survey, as well as other measures of child and family functioning. RESULTS: Mothers reported a high prevalence and broad range of unmet family needs. The most frequent area of need was for information about services and ways to promote child health and development. Predictors of total number of family needs included demographic characteristics, ratings of social support, and appraisals of family burden. Predictors of specific types of family needs varied according to category of need. CONCLUSIONS: Innovative psychosocial intervention programs are needed in primary care settings to reduce family needs and promote child health. More intensive family supports may be indicated for those with minority-group or low socioeconomic status, limited social support, or high perceived burden.

Rural versus urban social support seeking as a moderating variable in traumatic brain injury outcome.

OBJECTIVE: To investigate personal beliefs about seeking social support following traumatic brain injury (TBI) and the relationship of these appraisals to demographic and injury variables, social integration, and quality of life ratings. SETTING: The central region of a Midwest state. PARTICIPANTS: Fifty-six adults with TBI who were more than 6 months postinjury and living in the community. MAIN OUTCOME MEASURES: The Hesitation Scale, a 20-item survey that assesses reasons that people might hesitate to reach out to others in the community, and portions of the Living Life After Traumatic Brain Injury Scale. RESULTS: Negative attitudes and beliefs about seeking social support were significantly related to lower perceptions of social support, lower ratings of quality of life, longer time since injury, being divorced or separated, and living in an urban area. Predictors of higher quality of life ratings included more positive appraisals about seeking social support, living in a rural area, and the ability to engage in productive activity. CONCLUSIONS: Positive outcomes after TBI appear to be moderated by living in a rural area, which is associated with more openness to seeking social supports and contributes to better quality of life.

Memory functioning following traumatic brain injury in children with premorbid learning problems.

This study examines the memory functioning of 25 children who sustained a traumatic brain injury (TBI) and who had prior learning problems, 48 children with TBI who did not have prior learning problems, and 23 noninjured controls. The children with TBI and prior learning problems displayed significantly worse memory abilities than both the control participants and the children with TBI and no prior learning problems. They differed significantly from these 2 groups on measures of general memory, verbal memory, sound-symbol learning, and attention. The results suggest that children with premorbid learning problems who sustain TBI have less cognitive reserve and a lower threshold for the expression of cognitive impairments in areas that reflect preexisting learning and language problems, compared to children without premorbid learning problems.

Injury risk factors in children with attention deficit hyperactivity disorder.

Processes related to injury in children with Attention Deficit Hyperactivity Disorder (ADHD) were examined. Two groups of 7-11-year-old boys (14 ADHD and 16 controls) watched a videotape simulating play activities in order for them to identify risky behaviors and then answered questions about risky scenes. Groups did not differ in ability to identify hazards, but children with ADHD anticipated less severe consequences following risky behavior and reported fewer active methods of preventing injury than did controls. Cognitive factors, including lower expectations of personal risk in hazardous situations and less ability to generate prevention strategies and safety rules, may contribute to increased injury liability in boys with ADHD.