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Summary of Advances Cover 2016

Summary of Advances

In Autism Spectrum Disorder Research


Question 5: Where Can I Turn for Services?

The effects of Medicaid home and community-based services waivers on unmet needs among children with autism spectrum disorder
Leslie DL, Iskandarani K, Dick AW, Mandell DS, Yu H, Velott D, Agbese E, Stein BD. Med Care. 2017 Jan;55(1):57-63. [Available online 2016] [PMID: 27547947]

Health services for children with ASD can be a significant financial burden on families. Until recently, most ASD intervention and treatment programs were not included in insurance benefits, making it more difficult for children with ASD to access the care they need. To address this service gap, many states provide Medicaid Home and Community-Based Services (HCBS) waivers to expand health service coverage and eligibility for children with ASD. There is considerable variation among states in their eligibility criteria, services covered, and spending limits related to these waivers. It is not well understood whether Medicaid HCBS waivers and their characteristics are associated with reducing this service gap.

The goal of this study was to determine whether HCBS waivers reduced unmet healthcare needs for children with ASD. The researchers obtained data from the 2003, 2007, and 2011 versions of the National Survey of Children’s Health (NSCH), which is a telephone-based health survey. The researchers used data from parents with a child age 2 or older and divided this group into those with and without a child with ASD. They also used the survey questions that determined whether the parent felt that the child’s medical, dental, and mental health needs were being met. The researchers then obtained information on HCBS waiver programs for each state. The information included the average estimated costs of waiver services per individual, cost limit (maximum cost of services allowed for each person enrolled in the waiver program), and enrollment limit (number of people a waiver would serve).

The study included data from 35 states—11 states that provided HCBS waiver programs specifically for children with ASD and 24 states that did not. Analysis of waiver use from 2003 to 2011 showed that the average estimated cost of services provided through a waiver decreased from $49K to $38K. Across states that provided HCBS waiver programs, the average waiver cost limit increased from $81K to $121K, and the average maximum number of children who could be covered by a waiver decreased from 969 to 907.

The researchers found that children with ASD were significantly more likely than children without ASD to have unmet medical, dental, or mental health needs. The researchers found that access to HCBS waivers was associated with a significant decrease in the rate of unmet health needs for children with ASD in general. However, simply providing a waiver was not enough to reduce unmet health needs. Specific features of the waivers such as higher enrollment limits, lower cost, and higher cost limits significantly reduced the odds of having unmet health needs. The effect of these waiver characteristics on unmet needs was amplified as household income increased. There are some possible explanations for why HCBS waiver use provides a greater benefit to higher income households than lower income households. One possible reason is that children from lower income households are eligible for and covered under standard Medicaid, and the benefits of Medicaid are greater than that which is provided for in HCBS waivers. Another reason is that households with greater income may also have the resources needed to navigate the lengthy process of applying for HCBS waivers. Finally, children with ASD who live in higher income households may more often use private health insurance, which often does not adequately cover ASD services, requiring these families to bridge the service gap with waivers.

This study found that HCBS waivers significantly decreased unmet health needs for children with ASD, especially for children whose families had higher incomes and were less likely to use other Medicaid benefits. HCBS waivers can therefore be an effective strategy for meeting the unmet health needs of children with ASD, but additional efforts are needed to develop resources and supports that will enable lower income families of children with ASD to fully benefit from the waivers.

Effects of autism spectrum disorder insurance mandates on the treated prevalence of autism spectrum disorder
Mandell DS, Barry CL, Marcus SC, Xie M, Shea K, Mullan K, Epstein AJ. JAMA Pediatr. 2016 Sep 1;170(9):887- 93. [PMID: 27399053]

The cost of healthcare for children with ASD is significantly higher than that for typically developing children. In the past decade, many states have enacted mandates that require commercial insurance plans to cover ASD-related treatments. Insurance companies have argued that the treated prevalence of ASD—the number of individuals diagnosed with ASD being treated in the healthcare system—will increase with this mandated coverage, thereby increasing cost to the insurance company.

The goal of this study was to determine whether insurance mandates to cover ASD did in fact increase the number of children diagnosed with ASD. This study used observational data from health insurance claims for children 21 years old and younger from UnitedHealthcare, Aetna, and Humana to determine if insurance mandates for ASD increased the number of individuals who had at least one healthcare service claim associated with a diagnosis of ASD. Additionally, the researchers gathered detailed information about state-specific insurance mandates from the advocacy organization Autism Speaks, as well as original state mandate laws to verify when the mandate was enacted and its specific provisions for ASD services.

The researchers found that the treated prevalence of ASD did increase in states that had enacted ASD insurance mandates. The monthly treated prevalence of ASD was 1.8 per 1,000 children in states with ASD mandates, compared with 1.6 per 1,000 children in states without ASD mandates. The treated prevalence increased by approximately 10% at the beginning of insurance mandate use and increased to 18% after mandates had been in effect for 3 years, suggesting that there was some lag time between policy implementation and its active use.

During this study period, implementation of insurance mandates for ASD services was associated with an increased prevalence of children with ASD receiving treatment through private insurance. However, the increased treated prevalence was still well below the estimated community prevalence of ASD, suggesting that some children with ASD are still not getting the services they need. The implementation of insurance mandates for ASD may not have raised cost of ASD services as significantly as feared by insurance companies. But this study suggests that additional efforts are needed to further improve the ability for all children with ASD to access the services they need.

Sociodemographic disparities in intervention service utilization in families of children with autism spectrum disorder
Nguyen CT, Krakowiak P, Hansen R, Hertz-Picciotto I, Angkustsiri K. J Autism Dev Disord. 2016 Dec;46(12):3729-3738. [PMID: 27639855]

Between the years 2000 and 2012, the prevalence of ASD has increased from 1 in 150 to 1 in 68 children. Research indicates that early intervention leads to better outcomes, but 9 in 10 children are not fully utilizing intervention services, even though provision of these services is mandated by the Individuals with Disabilities Education Act (IDEA). Children with ASD who do receive intervention access these services either through classroom-based or individual programs. However, the barriers that families face in fully utilizing these services are not well understood. In this study, researchers sought to understand whether certain sociodemographic factors contribute to how families use ASD intervention services.

The researchers investigated the following demographic factors: maternal race/ethnicity, maternal education, primary language spoken at home, and insurance type. Data was collected about families from the Child Autism Risks from Genetics and the Environment (CHARGE) Study, an ongoing study in California that aims to identify genetic and environmental contributions to ASD. In the CHARGE study, participants were interviewed over the phone to gather demographic information. In a follow-up in-person visit, the CHARGE researchers assessed children to confirm an ASD diagnosis, and administered a language questionnaire to determine the primary language spoken at home. Physicians also administered an in-person interview to determine intervention and service utilization for the child.

The researchers found that all of the studied demographic factors were associated with differences in ASD intervention use. One significant finding was that black mothers enrolled their children with ASD into a classroombased program about a half-year earlier than white mothers. There are a few possible explanations for this difference. First, children of white mothers may have received individual services at an earlier age, thus delaying entry into a classroom program. Second, black mothers may have sought classroom-based programs earlier to better manage their employment situations. Third, children of black mothers may have received a developmental delay or behavioral disorder diagnosis at an earlier age, allowing their children to access classroom-based services sooner.

Language was also a factor in accessing ASD services. Children with ASD whose primary language at home was not English entered a classroom-based program at an age of about 3 months older than children whose primary language was English. Three months represents a significant one-third of a school year, suggesting that children whose primary language is not English may fall significantly behind in school due to lack of service support. Additionally, Hispanic families were more likely to not receive individual ASD services at all—a finding that may also be a result of language barrier implications.

Finally, insurance type was a significant factor in how ASD services were used. The researchers found that children of families with public insurance used significantly fewer hours per week in individual services than children in families with private insurance. This finding aligns with past research showing that families in lower income brackets are less likely to use specialized health services, even when those services are made available to families with public insurance. This disparity may result from not being aware that these services are available to them or because their access to these services would result in lost wages and other costs.

This study found that certain demographic factors can negatively impact how families access ASD services. To address these disparities, programs can increase their education and outreach efforts to target families who use public insurance or who have lower household incomes. Outreach efforts can also focus on cultural diversity to promote community support and increase awareness about available services. In addition to outreach and education, case management support can be increased to support families who have language barriers and may be unaware of available programs.

Question 5

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