Economic burdens on parents of children with autism: a literature review.

This review aims to summarize evidence from published articles regarding the economic burdens on parents of children diagnosed with autism to elaborate on current research status, discern key findings and provide suggestions for future studies. A total of 1024 records were identified through our systematic literature research, and 33 studies were included in the review. The 33 included studies reported findings from 10 different countries around the world. These articles (published from 2003 to 2017) used a variety of research methods, including quantitative (n = 26), qualitative (n = 4), and mixed (n = 3) study designs. In summary, parents of autistic children were susceptible to adverse employment impacts and increased financial burdens, especially mothers. More attention should be given to the development of appropriate medical resource allocation and the alleviation of economic burdens on parents of children with autism.

Utilization and medical costs of outpatient rehabilitation among children with autism spectrum conditions in Taiwan.

BACKGROUND: We examined the utilization of rehabilitation resources among children with autism spectrum condition (ASC), a neurodevelopmental condition, in Taiwan. METHODS: We derived from the National Health Insurance Research Database of Taiwan data pertaining to 3- to 12-year-old children for the period 2008-2010. Based on diagnoses executed in accordance with the International Classification of Diseases, Ninth Revision, Clinical Modification, we classified these data into the ASC and non-ASC groups and analyzed them through multiple linear regression model, negative binomial model, independent sample t testing, and χ2 testing. RESULTS: Compared with the non-ASC group, the ASC group exhibited higher utilization of rehabilitation resources. Because hospitals are constrained by overall expenditure limits, expenditure on rehabilitation resources has plateaued, preventing any increase in the utilization of rehabilitation resources. In our ASC group, preschool-aged children significantly outnumbered (p < 0.001) school-aged children. When stratified by the hospital level, district hospitals reported the highest utilization (p < 0.001). When stratified by region, the highest utilization was in Taipei, whereas the lowest was in the East region (p < 0.001). The total annual cost, average frequency of visits, utilization of rehabilitation resources, and average cost were all affected by such elements as patient demographics, hospital type and location (p < 0.001). CONCLUSIONS: For improving treatment outcomes among children with ASC and decreasing treatment expenditure, policies that promote the timely ASC detection and treatment should be implemented.

Autism Prevalence in the Medicaid Program and Healthcare Utilization and Costs Among Adult Enrollees Diagnosed with Autism.

As the number of individuals diagnosed with autism increases, there is an increase in demand to provide support throughout their lifespan. This study aimed to: (1) estimate trends in the prevalence of autism diagnoses and medical services use in adults with autism diagnoses; (2) assess predictors of healthcare utilization and costs among adults with autism diagnoses enrolled in Medicaid. A retrospective analysis of 2006-2008 Medicaid claims for 39 states was conducted. There was a 38% increase in the prevalence of autism diagnoses from 2006 to 2008. Total expenditures and outpatient and ER visits varied significantly by demographic variables.

Do Insurance Mandates Affect Racial Disparities in Outcomes for Children with Autism?

Objective The study investigated whether state mandates for private insurers to provide services for children with autism influence racial disparities in outcomes. Methods The study used 2005/2006 and 2009/2010 waves of the National Survey of Children with Special Health Care Needs. Children with a current diagnosis of autism were included in the sample. Children residing in 14 states and the District of Columbia that were not covered by the mandate in the 2005/2006 survey, but were covered in the 2009/2010 survey, served as the mandate group. Children residing in 32 states that were not covered by a mandate in either wave served as the comparison group. Outcome measures assessed included care quality, family economics, and child health. A difference-in-difference-in-differences (DDD) approach was used to assess the impact of the mandates on racial disparities in outcomes. Results Non-white children had less access to family-centered care compared to white children in both waves of data, but this difference was not apparent across mandate and comparison states as only the comparison states had significant differences. Parents of non-white children reported paying less in annual out-of-pocket expenses compared to parents of white children across waves and groups. DDD estimates did not provide evidence that the mandates had statistically significant effects on improving or worsening racial disparities for any outcome measure. Conclusions This study did not find evidence that state mandates on private insurers affected racial disparities in outcomes for children with autism.

Environmental Enrichment Therapy for Autism: Outcomes with Increased Access.

We have previously shown in two randomized clinical trials that environmental enrichment is capable of ameliorating symptoms of autism spectrum disorder (ASD), and in the present study, we determined whether this therapy could be effective under real-world circumstances. 1,002 children were given daily Sensory Enrichment Therapy, by their parents, using personalized therapy instructions given over the Internet. Parents were asked to assess the symptoms of their child every 2 weeks for up to 7 months. An intention-to-treat analysis showed significant overall gains for a wide range of symptoms in these children, including learning, memory, anxiety, attention span, motor skills, eating, sleeping, sensory processing, self-awareness, communication, social skills, and mood/autism behaviors. The children of compliant caregivers were more likely to experience a significant improvement in their symptoms. The treatment was effective across a wide age range and there was equal progress reported for males and females, for USA and international subjects, for those who paid and those who did not pay for the therapy, and for individuals at all levels of initial symptom severity. Environmental enrichment, delivered via an online system, therefore appears to be an effective, low-cost means of treating the symptoms of ASD.

Cost-effectiveness analysis of a communication-focused therapy for pre-school children with autism: results from a randomised controlled trial.

BACKGROUND: Autism is associated with impairments that have life-time consequences for diagnosed individuals and a substantial impact on families. There is growing interest in early interventions for children with autism, yet despite the substantial economic burden, there is little evidence of the cost-effectiveness of such interventions with which to support resource allocation decisions. This study reports an economic evaluation of a parent-mediated, communication-focused therapy carried out within the Pre-School Autism Communication Trial (PACT). METHODS: 152 pre-school children with autism were randomly assigned to treatment as usual (TAU) or PACT + TAU. Primary outcome was severity of autism symptoms at 13-month follow-up. Economic data included health, education and social services, childcare, parental productivity losses and informal care. RESULTS: Clinically meaningful symptom improvement was evident for 53 % of PACT + TAU versus 41 % of TAU (odds ratio 1.91, p = 0.074). Service costs were significantly higher for PACT + TAU (mean difference £4,489, p < 0.001), but the difference in societal costs was smaller and non-significant (mean difference £1,385, p = 0.788) due to lower informal care rates for PACT + TAU. CONCLUSIONS: Improvements in outcome generated by PACT come at a cost. Although this cost is lower when burden on parents is included, the cost and effectiveness results presented do not support the cost-effectiveness of PACT + TAU compared to TAU alone. TRIAL REGISTRATION: Current Controlled Trials ISRCTN58133827.

Healthcare expenditures for autism during times of school transition: some vulnerable families fall behind.

This study explores the association between school transition age and healthcare expenditures for children with autism. The paper explores three questions: (1) What is the composition of services overall and paid out-of-pocket and does it differ at transition? (2) Do transition age children have higher total and out-of-pocket health care expenditures than other children with autism? (3) Does the effect of transition differ for vulnerable families who often experience problems accessing care? Pooled data from the Medical Expenditure Panel Survey 2000-2009 on children under 21 years of age with autism (n = 337) were used to describe expenditures for services by source of payment and estimate two-part models of total and out-of-pocket expenditures as a function of child transition age (5, 6, 11, 14) and other child and family characteristics. Median total annual expenditures for health care among children with autism are $2,400; median out-of-pocket expenditures are $390. The majority of total expenditures are devoted to outpatient medical services; nearly half of family out-of-pocket spending is devoted to prescription medications. When children are transition age, a larger proportion of both overall and out-of-pocket expenditures go toward ambulatory therapy, while a smaller proportion of out-of-pocket expenditures are devoted to prescription medications compared to children of other ages. Transition age children from vulnerable families experience a drop in expenditures that families with more resources fill through out-of-pocket spending. Findings raise questions about the dimensions of care for children with autism. Schools may be better positioned than health insurance to foster continuity of care.

Setting global research priorities for developmental disabilities, including intellectual disabilities and autism.

OBJECTIVES: The prevalence of intellectual disabilities (ID) has been estimated at 10.4/1000 worldwide with higher rates among children and adolescents in lower income countries. The objective of this paper is to address research priorities for development disabilities, notably ID and autism, at the global level and to propose the more rational use of scarce funds in addressing this under-investigated area. METHODS: An expert group was identified and invited to systematically list and score research questions. They applied the priority setting methodology of the Child Health and Nutrition Research Initiative (CHNRI) to generate research questions and to evaluate them using a set of five criteria: answerability, feasibility, applicability and impact, support within the context and equity. FINDINGS: The results of this process clearly indicated that the important priorities for future research related to the need for effective and efficient approaches to early intervention, empowerment of families supporting a person with developmental disability and to address preventable causes of poor health in people with ID and autism. CONCLUSIONS: For the public health and other systems to become more effective in delivering appropriate support to persons with developmental disabilities, greater (and more targeted) investment in research is required to produce evidence of what works consistent with international human rights standards.

The associations between autistic characteristics and microtransaction spending.

Microtransactions provide optional, virtual, video game goods that, for an additional cost to the player, provide additional game content and alter the gameplay experience. Loot boxes-a specific form of microtransaction-offer randomised rewards in exchange for payment, and are argued to be structurally and psychologically similar to gambling. Nascent research suggests that a link exists between autism and both problematic gaming and problematic gambling. Here, we investigated the relationships between autistic characteristics and experiences, and excessive video gaming and microtransaction expenditure. A sample of 1178 adults from Australia, Aotearoa, and The United States were recruited from Prolific Academic, and completed a survey measuring in-game expenditure, autistic characteristics and experiences, problematic gaming, problematic gambling, and risky loot box use. Analyses showed positive associations between autistic characteristics and experiences with problematic gaming and problem gambling symptomatology. However, results also showed a small, negative association between autistic characteristics and experiences and spending on loot boxes when problem gambling symptoms, problematic gaming, and risky loot box use were statistically controlled for. These results suggest that autistic gamers may be vulnerable to problematic gaming and gambling, but that this effect does not extend to the purchasing of microtransactions.

Use and cost of psychotropic drugs among recipients with autism in a state Medicaid fee-for-service programme.

BACKGROUND: There has been a significant increase in the prevalence of autism in the USA in the past few decades. The purpose of this study was to provide recent estimates of psychotropic drug use and costs among individuals with autism enrolled in Medicaid programme. METHOD: A cross-sectional analysis of 2007 Mississippi (MS) Medicaid fee-for-service (FFS) programme administrative-claims data was performed. Study sample included recipients (<65 years) who had a medical services claim with a diagnosis of autism in 2007. Psychotropic drug patterns of use and costs were studied. Factors predicting the use of psychotropic drugs were identified using logistic regression analyses. Average number and cost of psychotropic drug claims per recipient were reported. Costs were reported from the perspective of MS Medicaid. RESULTS: In 2007, there were 1330 recipients with a diagnosis of autism in MS Medicaid FFS programme. Among these recipients, 66.32% had a claim for psychotropic drug during the year. Roughly 39% of recipients with autism had a claim for antipsychotics, 31.58% for stimulants, 19.55% for antidepressants, 19.40% for other psychotropics and 14.81% for anxiolytics/hypnotics/sedatives. Results from regression analyses highlighted variation in psychotropic drug use by demographic and co-morbid factors. There were a total of 12,618 claims for psychotropic drugs filled by recipients with autism in 2007, at an average of 14 (±12) claims per recipient. The total cost of these claims paid for by MS Medicaid FFS programme was ∼$2 million. Antipsychotics accounted for more than half (∼58%) of the total costs, and had the highest average cost per claim ($291 ± 205). CONCLUSIONS: The results of this study indicate a high use of psychotropic drugs among individuals with autism enrolled in a state Medicaid programme. There is an urgent need to study the risk-benefit profile of these drugs in this growing population. Psychotropic drug use was found to vary by demographic and co-morbid factors. Among the different classes of psychotropic drugs, antipsychotics were the most commonly used and had the highest cost per claim.

Access to care for children with autism in the context of state Medicaid reimbursement.

This paper examines the role of state residence and Medicaid reimbursement rates in explaining the relationship between having autism and access to care for children. Three questions are addressed: (1) Is there variation across states in the relationship between having autism and access to care? (2) Does taking account of state residence explain a significant amount of the variation in this relationship? (3) Does accounting for Medicaid reimbursement rates enhance our understanding of this relationship? Data from the 2005 National Survey of Children with Special Health Care Needs were combined with state characteristics to estimate a hierarchical generalized linear model of the association between state residence, Medicaid reimbursement rate and problems accessing care for children with special health care needs with and without autism. Findings indicate there is significant variation between states in the relationship between having autism and problems accessing care, and accounting for state residence explains a significant amount of variation in the model. Medicaid reimbursement rates have an independent effect on access to care for children with autism: when families raising children with autism live in states with higher reimbursement rates, they have lower odds of experiencing problems accessing care. The state context in which families live impacts access to care for children with autism. Moreover, when families live in states with higher Medicaid reimbursement rates, they are less likely to experience problems getting care. The value of this analysis is that it helps identify where to look for strategies to improve access.

Racial and ethnic disparities in benefits eligibility and spending among adults on the autism spectrum: A cohort study using the Medicare Medicaid Linked Enrollees Analytic Data Source.

BACKGROUND: Research on children and youth on the autism spectrum reveal racial and ethnic disparities in access to healthcare and utilization, but there is less research to understand how disparities persist as autistic adults age. We need to understand racial-ethnic inequities in obtaining eligibility for Medicare and/or Medicaid coverage, as well as inequities in spending for autistic enrollees under these public programs. METHODS: We conducted a cross-sectional cohort study of U.S. publicly-insured adults on the autism spectrum using 2012 Medicare-Medicaid Linked Enrollee Analytic Data Source (n = 172,071). We evaluated differences in race-ethnicity by eligibility (Medicare-only, Medicaid-only, Dual-Eligible) and spending. FINDINGS: The majority of white adults (49.87%) were full-dual eligible for both Medicare and Medicaid. In contrast, only 37.53% of Black, 34.65% Asian/Pacific Islander, and 35.94% of Hispanic beneficiaries were full-dual eligible for Medicare and Medicare, with most only eligible for state-funded Medicaid. Adjusted logistic models controlling for gender, intellectual disability status, costly chronic condition, rural status, county median income, and geographic region of residence revealed that Black beneficiaries were significantly less likely than white beneficiaries to be dual-eligible across all ages. Across these three beneficiary types, total spending exceeded $10 billion. Annual total expenditures median expenditures for full-dual and Medicaid-only eligible beneficiaries were higher among white beneficiaries as compared with Black beneficiaries. CONCLUSIONS: Public health insurance in the U.S. including Medicare and Medicaid aim to reduce inequities in access to healthcare that might exist due to disability, income, or old age. In contrast to these ideals, our study reveals that racial-ethnic minority autistic adults who were eligible for public insurance across all U.S. states in 2012 experience disparities in eligibility for specific programs and spending. We call for further evaluation of system supports that promote clear pathways to disability and public health insurance among those with lifelong developmental disabilities.

Economic costs and preference-based health-related quality of life outcomes associated with childhood psychiatric disorders.

BACKGROUND: Childhood psychiatric disorders may have deleterious consequences through childhood and into adulthood. AIMS: To estimate costs and preference-based health-related quality of life outcomes (health utilities) associated with a broad range of childhood psychiatric disorders during the eleventh year of life. METHOD: Participants in a whole-population study of extremely preterm children and term-born controls (EPICure) undertook psychiatric assessment using the Development and Well Being Assessment (DAWBA) and the Kaufman-Assessment Battery for Children. Questionnaires completed by parents and teachers described the children's utilisation of health, social and education services during the eleventh year of life. Parents also described their child's health status using the Health Utilities Index Mark 2 and Mark 3 health status classification systems. Descriptive and multiple regression techniques were used to explore the association between psychiatric disorders and economic outcomes. RESULTS: The study presents detailed costs and health utilities associated with psychiatric disorders for the preterm population, term-born population and pooled study population, following appropriate controls. CONCLUSIONS: The results of this study should be used to inform future economic evaluations of interventions aimed at preventing childhood psychiatric disorders or alleviating their effects. Further research is required that identifies, measures and values the longer-term economic impacts of these disorders in a valid and reliable manner.

Autism in the U.S.: social movement and legal change.

The social movement surrounding autism in the U.S. has been rightly defined a ray of light in the history of social progress. The movement is inspired by a true understanding of neuro-diversity and is capable of bringing about desirable change in political discourse. At several points along the way, however, the legal reforms prompted by the autism movement have been grafted onto preexisting patterns of inequality in the allocation of welfare, education, and medical services. In a context most recently complicated by economic recession, autism-driven change bears the mark of political and legal fragmentation. Distributively, it yields ambivalent results that have not yet received systemic attention. This article aims to fill this analytical vacuum by offering, first, a synoptic view of the several legal transformations brought about or advocated for by the autism movement and, second, a framework for investigating their distributive consequences.

California Autism Prevalence by County and Race/Ethnicity: Declining Trends Among Wealthy Whites.

County-level ASD prevalence was estimated using an age-resolved snapshot from the California Department of Developmental Services (DDS) for birth years 1993-2013. ASD prevalence increased among all children across birth years 1993-2000 but plateaued or declined thereafter among whites from wealthy counties. In contrast, ASD rates increased continuously across 1993-2013 among whites from lower income counties and Hispanics from all counties. Both white ASD prevalence and rate of change in prevalence were inversely correlated to county income from birth year 2000-2013 but not 1993-2000. These disparate trends within the dataset suggest that wealthy white parents, starting around 2000, may have begun opting out of DDS in favor of private care and/or making changes that effectively lowered their children's risk of ASD.

Patient outcomes associated with tailored hospital programs for intellectual disabilities.

OBJECTIVES: Hospitals have begun designing programs tailored to patients with intellectual disabilities to address their specific healthcare needs and social determinants of health. This study aimed to determine whether these programs improve hospital outcomes for patients with intellectual disabilities. STUDY DESIGN: This cross-sectional, retrospective study analyzed data for patients with a primary or secondary diagnosis of intellectual disability and/or autism who were discharged from 5 hospitals participating in Vizient's Clinical Data Base/Resource Manager between January 2010 and September 2018. METHODS: Generalized linear regression models were constructed to test the association between tailored program status and length of stay, cost, and cost per day, and a binary logistic regression model was constructed to test the association between tailored program status and 30-day readmission. A secondary analysis stratified patients by 3M All Patient Refined Diagnosis Related Groups grouper (the standard for inpatient classification) admission severity of illness (ASOI) score. RESULTS: Of the 6618 patients included in the study, 29% were treated at hospitals with tailored programs. After controlling for patient demographic characteristics and clinical factors, patients treated at hospitals without programs had higher total costs (relative risk [RR], 1.06; P = .038) and cost per day (RR, 1.11; P <.001). Patients with an extreme ASOI score who were treated at hospitals without programs had significantly longer stays (RR, 1.38; P = .001), higher total cost (RR, 1.42; P <.001), and higher cost per day (RR, 1.10; P = .025) than patients treated at hospitals with programs. CONCLUSIONS: Providing tailored programs for patients with intellectual disabilities is a promising strategy for improving inpatient care for this population.