State adoption of Medicaid 1915(c) waivers for children and youth with Autism Spectrum Disorder.

BACKGROUND: The prevalence of Autism Spectrum Disorder (ASD) has increased dramatically, with one in every 68 children in the U.S. currently diagnosed with ASD. Medicaid is the primary public funder of health care services for individuals with ASD. One mechanism state Medicaid agencies can use to craft ASD-specific services is a 1915(c) waiver. OBJECTIVE: This study investigated what state policy makers perceived to be primary success factors and barriers to adopting an ASD specific 1915(c) waiver, as well as what services and supports are available in each state for children and transition-age youth with ASD. METHODS: Data were collected by contacting state Medicaid directors via email with an electronic survey, with an 84% response rate. RESULTS: Support from state legislators and parents and family members were the primary success factors in adopting an ASD specific waiver. The primary barrier was insufficient funding. States not adopting an ASD specific waiver also perceived that children and youth with ASD were served sufficiently well through other Medicaid benefits. Analysis of specific services indicated that the majority of states provide their services to children and transition age youth with ASD through a 1915(c) waiver for individuals with intellectual or developmental disabilities, often coupled with an ASD specific waiver for children, another 1915(c) waiver for children, and/or a another 1915(c) waiver, most often for children with serious emotional disturbance. CONCLUSION: Further research is needed to determine which approach(es) is most effective in enhancing access and improving outcomes for children and youth with ASD.

The effects of mandated health insurance benefits for autism on out-of-pocket costs and access to treatment.

As of 2014, 37 states have passed mandates requiring many private health insurance policies to cover diagnostic and treatment services for autism spectrum disorders (ASDs). We explore whether ASD mandates are associated with out-of-pocket costs, financial burden, and cost or insurance-related problems with access to treatment among privately insured children with special health care needs (CSHCNs). We use difference-in-difference and difference-in-difference-in-difference approaches, comparing pre--post mandate changes in outcomes among CSHCN who have ASD versus CSHCN other than ASD. Data come from the 2005 to 2006 and the 2009 to 2010 waves of the National Survey of CSHCN. Based on the model used, our findings show no statistically significant association between state ASD mandates and caregivers' reports about financial burden, access to care, and unmet need for services. However, we do find some evidence that ASD mandates may have beneficial effects in states in which greater percentages of privately insured individuals are subject to the mandates. We caution that we do not study the characteristics of ASD mandates in detail, and most ASD mandates have gone into effect very recently during our study period.

Autism and families' financial burden: the association with health insurance coverage.

We examined the relationship between family financial burden and children's health insurance coverage in families (n  =  316) raising children with autism spectrum disorders (ASD), using pooled 2000-2009 Medical Expenditure Panel Survey data. Measures of family financial burden included any out-of-pocket spending in the previous year, and spending as a percentage of families' income. Families spent an average of $9.70 per $1,000 of income on their child's health care costs. Families raising children with private insurance were more than 5 times as likely to have any out-of-pocket spending compared to publicly insured children. The most common out-of-pocket expenditure types were medications, outpatient services, and dental care. This study provides evidence of the relative inadequacy of private insurance in meeting the needs of children with ASD.

Employment and financial burden of families with preschool children diagnosed with autism spectrum disorders in urban China: results from a descriptive study.

BACKGROUND: Autism spectrum disorder (ASD) affects many aspects of family life, such as social and economic burden. Little investigation of this phenomenon has been carried out in China. We designed this study to evaluate the employment and financial burdens of families with ASD-diagnosed preschoolers. METHODS: Four hundred and fifty-nine nuclear families of children with ASD, 418 with some other disability (OD) and 424 with typically developing (TD) children were recruited for this study. Employment and financial burdens of families were evaluated using a structured questionnaire; logistic regression was used to examine differences in job change measures by group, and ordinal logistic regression was used to investigate the association between household income and group. RESULTS: Fifty-eight percent of families with ASD children and 19% of families with OD children reported that childcare problems had greatly affected their employment decisions, compared with 9% of families with TD children (p < 0.001). Age of child, parental education and parental age notwithstanding, having a child with ASD and having a child with OD were both associated with increased odds of reporting that childcare greatly interfered with employment (ASD, OR: 15.936; OD, OR: 2.502; all p < 0.001) and decreased the odds of living in a higher-income household (ASD, estimate = -1.271; OD, estimate = -0.569; all p < 0.001). The average loss of annual income associated with having a child with ASD was Chinese RenMinBi (RMB) 44,077 ($7,226), compared with RMB 20,788 ($3,408) for families of OD children. CONCLUSIONS: ASD is associated with severe employment and financial burdens, much more than for OD, in families with preschool children.

A cross-sectional cohort study of a large, statewide Medicaid home and community-based services autism waiver program.

State-specific 1915(c) Medicaid Home and Community-Based Services waiver programs have become central in the provision of services specifically tailored to children with autism spectrum disorders (ASD). Using propensity score matching, 130 families receiving waiver services for a child with ASD were matched with and compared to 130 families waiting on the registry (i.e., control group). Results indicate that participants in the waiver group reported more improvement in independent living skills and family quality of life over the last year compared to those on the registry. More frequent intensive individual support services and therapeutic integration were statistically predictive of improvement in a variety of domains. The results suggest that the waiver program may be promising for improving child and family functioning.

Non-traumatic Dental Condition-Related Emergency Department Visits and Associated Costs for Children and Adults with Autism Spectrum Disorders.

We analyzed 2010 US National Emergency Department Sample data and ran regression models to test the hypotheses that individuals with ASD are more likely to have non-traumatic dental condition (NTDC)-related emergency department (ED) visits and to incur greater costs for these visits than those without ASD. There were nearly 2.3 million NTDC-related ED visits in 2010. Less than 1.0% (children) and 2.1% (adults) of all ED visits were for NTDC. There was no significant difference in NTDC-related ED visits or costs for children by ASD status. Adults with ASD had significantly lower odds of NTDC-related ED visits (OR 0.39; 95% CI 0.29, 0.52; p < 0.001) but incurred significantly greater mean costs for NTDC-related ED visits (p < 0.006) than did adults without ASD.

Fiscal mapping autism spectrum disorder funds: a case study of Ohio.

Individuals with autism spectrum disorders (ASDs) have complex needs requiring regular service utilization. Policymakers, administrators, and community leaders are looking for ways to finance ASD services and systems. Understanding the fiscal resources that support ASD services is essential. This article uses fiscal mapping to explore ASD funding streams in Ohio. Fiscal mapping steps are overviewed to assist ASD stakeholders in identifying and examining ASD-related funding. Implications are drawn related to how fiscal mapping could be used to identify and leverage funding for ASD services. The resulting information is critical to utilizing existing resources, advocating for resources, and leveraging available funds.

Parent skills training for parents of children or adults with developmental disorders: systematic review and meta-analysis protocol.

INTRODUCTION: Developmental disorders, including intellectual disability and autism spectrum disorders, may limit an individual's capacity to conduct daily activities. The emotional and economic burden on families caring for an individual with a developmental disorder is substantial, and quality of life may be limited by a lack of services. Therefore, finding effective treatments to help this population should be a priority. Recent work has shown parent skills training interventions improve developmental, behavioural and family outcomes. The purpose of this review protocol is to extend previous findings by systematically analysing randomised controlled trials of parent skills training programmes for parents of children with developmental disorders including intellectual disabilities and autism spectrum disorders and use meta-analytic techniques to identify programme components reliably associated with successful outcomes of parent skills training programmes. METHODS AND ANALYSIS: We will include all studies conducted using randomised control trials designs that compare a group of parents receiving a parent skills training programme to a group of parents in a no-treatment control, waitlist control or treatment as usual comparison group. To locate studies, we will conduct an extensive electronic database search and then use snowball methods, with no limits to publication year or language. We will present a narrative synthesis including visual displays of study effects on child and parental outcomes and conduct a quantitative synthesis of the effects of parent skills training programmes using meta-analytic techniques. ETHICS AND DISSEMINATION: No ethical issues are foreseen and ethical approval is not required given this is a protocol for a systematic review. The findings of this study will be disseminated through peer-reviewed publications and international conference presentations. Updates of the review will be conducted, as necessary, to inform and guide practice. TRIAL REGISTRATION NUMBER: PROSPERO (CRD42014006993).

Costs of autism spectrum disorders in the United Kingdom and the United States.

IMPORTANCE: The economic effect of autism spectrum disorders (ASDs) on individuals with the disorder, their families, and society as a whole is poorly understood and has not been updated in light of recent findings. OBJECTIVE: To update estimates of age-specific, direct, indirect, and lifetime societal economic costs, including new findings on indirect costs, such as individual and parental productivity costs, associated with ASDs. DESIGN, SETTING, AND PARTICIPANTS: A literature review was conducted of US and UK studies on individuals with ASDs and their families in October 2013 using the following keywords: age, autism spectrum disorder, prevalence, accommodation, special education, productivity loss, employment, costs, and economics. Current data on prevalence, level of functioning, and place of residence were combined with mean annual costs of services and support, opportunity costs, and productivity losses of individuals with ASDs with or without intellectual disability. EXPOSURE: Presence of ASDs. MAIN OUTCOMES AND MEASURES: Mean annual medical, nonmedical, and indirect economic costs and lifetime costs were measured for individuals with ASDs separately for individuals with and without intellectual disability in the United States and the United Kingdom. RESULTS: The cost of supporting an individual with an ASD and intellectual disability during his or her lifespan was $2.4 million in the United States and £1.5 million (US $2.2 million) in the United Kingdom. The cost of supporting an individual with an ASD without intellectual disability was $1.4 million in the United States and £0.92 million (US $1.4 million) in the United Kingdom. The largest cost components for children were special education services and parental productivity loss. During adulthood, residential care or supportive living accommodation and individual productivity loss contributed the highest costs. Medical costs were much higher for adults than for children. CONCLUSIONS AND RELEVANCE: The substantial direct and indirect economic effect of ASDs emphasizes the need to continue to search for effective interventions that make best use of scarce societal resources. The distribution of economic effect across many different service systems raises questions about coordination of services and sectors. The enormous effect on families also warrants policy attention.

Health care experiences and perceived financial impact among families of children with an autism spectrum disorder.

OBJECTIVE: The authors compared the health care experiences of families raising a child with autism spectrum disorder (ASD), an intellectual disability disorder (IDD), or attention-deficit hyperactivity disorder (ADHD). METHODS: Children with a current diagnosis of ASD (N=3,005), ADHD (N=9,662), or IDD (N=949) were identified in the 2009-2010 National Survey of Children With Special Health Care Needs. Weighted structural equation modeling was used to determine the association between family satisfaction with medical care, timeliness of care, and medical insurance coverage and the impact of the child's condition on the family's financial situation. RESULTS: Families of children diagnosed as having ASD comorbid with either ADHD or IDD or comorbid with both conditions reported the highest levels of dissatisfaction across all health care quality variables and experienced the greatest impact on the family's financial situation. CONCLUSIONS: The findings underscore the need for comprehensive and accessible health care services for children with ASD, particularly those with comorbid conditions.

Economic burden of childhood autism spectrum disorders.

OBJECTIVE: To estimate the associations between autism spectrum disorder (ASD) diagnoses and service use, caregiver time, and cost outcomes. METHODS: We used national data from the Medical Expenditure Panel Survey linked to the National Health Interview Survey and a study-specific survey to estimate the annual utilization and costs for health care, school, ASD-related therapy, family-coordinated services, as well as caregiver time in children aged 3 to 17 years, with and without parent-reported ASD. Regression analyses estimated the association between ASD diagnosis and cost, controlling for child gender, age, race/ethnicity, insurance status, household income, country region and urban/rural classification, and non-ASD-related illnesses. RESULTS: Children with parent-reported ASD had higher levels of health care office visits and prescription drug use compared with children without ASD (P < .05). A greater proportion of children in the ASD group used special educational services (76% vs. 7% in the control group, P < .05). After adjusting for child demographic characteristics and non-ASD-associated illnesses, ASD was associated with $3020 (95% confidence interval [CI]: $1017-$4259) higher health care costs and $14,061 (95% CI: $4390-$24,302) higher aggregate non-health care costs, including $8610 (95% CI: $6595-$10,421) higher school costs. In adjusted analyses, parents who reported that their child had ASD did not have significantly higher out-of-pocket costs or spend more time on caregiving activities compared with control parents. CONCLUSIONS: The economic burden associated with ASD is substantial and can be measured across multiple sectors of our society. Previous analyses that focused on health care underestimated this economic burden, particularly for school systems.

How states use Medicaid to fund community-based services to children with autism spectrum disorders.

OBJECTIVE: This study examined the extent to which state Medicaid agencies funded 16 services for children with autism spectrum disorders: individual therapy, physical and occupational therapy, in-home supports, speech therapy, diagnostic assessment, behavior modification, family therapy, case management, targeted case management, respite, day treatment, social skills training, habilitation services, treatment planning, family education and training, and assistive communication devices. METHODS: Procedure codes in the Medicaid Analytic eXtract (MAX) "other therapies" file were used to identify community-based services commonly delivered to children with a diagnosis of a primary autism spectrum disorder. RESULTS: Four services are commonly used to address the core deficits of these disorders: physical and occupational therapy, speech therapy, behavior modification, and social skills training. Only six states funded all four services. CONCLUSIONS: States varied considerably in use of Medicaid to reimburse these services, indicating that some states may have opportunities to receive federal matching funds.

Impact of state mental health parity laws on access to autism services.

OBJECTIVES: This study examined the effect of state mental health parity laws on family financial burden, satisfaction with health insurance, and receipt of needed mental health services for privately insured children ages three to 17 with autism spectrum disorder (ASD). METHODS: Data came from the 2005-2006 wave of the National Survey of Children With Special Health Care Needs. An econometric approach with instrumental variables was used to control for the nonrandom selection of states according to their mental health parity laws. The study analyzed data for 949 youths with ASD and private health insurance. Six outcome variables were examined, including several measures of family financial burden, satisfaction with health insurance, and receipt of needed mental health services. RESULTS: Families of children needing mental health services and living in a state with a strict parity law had a 61% higher probability of reporting out-of-pocket spending >$1,000 compared with those not living in a strict parity state. Compared with families of children living in a strict parity state that did not specify ASD, those living in a strict parity state that specified ASD had a 92% higher probability of reporting unreasonable out-of-pocket spending. All other results were statistically insignificant. CONCLUSIONS: In contrast with previous research, this study did not find strong evidence that state mental health parity laws positively affected service access for children with ASD. Future research on the effect of autism insurance reform will provide a more precise test of the impact of insurance mandates on improving access to treatment services for children with ASD.

A comparison study of depression and quality of life in Turkish mothers of children with Down syndrome, cerebral palsy, and autism spectrum disorder.

This study aimed to compare the quality of life and depression levels in Turkish mothers of children with Down syndrome, cerebral palsy, and Autism Spectrum Disorder (ASD). An additional purpose is to identify whether the depression and quality of life levels of the mothers differ significantly based on demographic variables. Two hundred fifty-two mothers participated in the study. The World Health Organization's Quality of Life-BREF (WHOQOL-BREF-TR) assessment instrument was used to determine the mothers' quality of life and the Beck Depression Inventory (BDI) to characterize their depression. Mothers of children with cerebral palsy had significantly lower quality of life scores on the environment and national environment domains of the WHOQOL-BREF-TR than those of children with Down syndrome. No significant difference was observed in the depression of mothers. With increasing education and income, quality of life of the mothers increased whereas depression decreased. Moreover, depression increased and quality of life decreased in older mothers. Furthermore, the findings indicated significant negative correlations between mothers' depression and quality of life scores on all domains of the WHOQOL-BREF-TR.

A cost of illness study of children with high-functioning autism spectrum disorders and comorbid anxiety disorders as compared to clinically anxious and typically developing children.

The study's aim was to estimate the societal costs of children with high-functioning ASD and comorbid anxiety disorder(s) (ASD + AD-group; n = 73), and to compare these costs to children with anxiety disorders (AD-group; n = 34), and typically developing children (controls; n = 87). Mean total costs for the ASD + AD-group amounted 17,380 per year. Societal costs were estimated at almost 142 million euro per year. Costs in the ASD + AD-group were four times higher compared to the AD-group, and 27 times higher compared to controls. ASD-related costs were higher in the ASD + AD-group; anxiety-related costs did not differ between the ASD + AD- and AD-group; costs due to physical or other reasons did not differ across groups. The findings suggest that costs can be decreased if effective treatment options for treating anxiety in ASD are established, however, the remaining costs associated with ASD would still be large. A limitation of the study is that a group of children with ASD without anxiety disorders is lacking.

A survey of out-of-pocket expenditures for children with autism spectrum disorder in Israel.

We describe a survey of children with ASD aged 4-10 years. The main dependent variables were out-of-pocket expenditures for health services and hours of therapy. Multivariable logistic regression models were used in order to find independent predictors for service utilization. Parents of 178 of the children (87 %) agreed to participate. The average annual out-of-pocket cost was $8,288, with a median of $4,473 and a range of $0-89,754. Higher severity of ASD and a parent with an academic degree were associated with higher expenditure. Having at least one older sibling, siblings without developmental disorders, regular education setting, lower parent education and low income were associated with lower expenditure.

Healthcare service use and costs for autism spectrum disorder: a comparison between medicaid and private insurance.

Healthcare costs and service use for autism spectrum disorder (ASD) were compared between Medicaid and private insurance, using 2003 insurance claims data in 24 states. In terms of costs and service use per child with ASD, Medicaid had higher total healthcare costs ($22,653 vs. $5,254), higher ASD-specific costs ($7,438 vs. $928), higher psychotropic medication costs($1,468 vs. $875), more speech therapy visits (13.0 vs. 3.6 visits), more occupational/physical therapy visits (6.4 vs. 0.9 visits), and more behavior modification/social skills visits (3.8 vs. 1.1 visits) than private insurance (all p < 0.0001). In multivariate analysis, being enrolled in Medicaid had the largest effect on costs, after controlling for other variables. The findings emphasize the need for continued efforts to improve private insurance coverage of autism.