Insurance Coverage for Children with Autism: Gaps and Opportunities in North Carolina By Nosipho Beaufort A Master s Paper submitted to the faculty of the University of North Carolina at Chapel Hill In partial fulfillment of the requirements for the degree of Master of Public Health in the Public Health Leadership Program. Chapel Hill 2016 Advisor: William A. Sollecito, DrPH Second Reader: Ann Ussery-Hall Date
Abstract In 2016, the Centers for Disease Control and Prevention estimated total autism spectrum disorder prevalence (ASD) of 6.7 per 1000 eight year olds. Screening, diagnostic and treatment services for ASD have been under-supported for many years. The Individuals with Disabilities Education Act, Part C was enacted to provide early identification and intervention services for children with developmental disabilities, including ASD, but has been implemented differently across the states. During the last decade, many states have enacted specific autism insurance mandates to improve access and close gaps in coverage, most recently the State of North Carolina. North Carolina s mandate still leaves significant gaps in coverage for the ASD population. This paper reviews the current state of ASD insurance coverage nationwide and in North Carolina and recommends creating a North Carolina run health insurance exchange to allow the autism insurance mandate to be extended to health insurance plans purchased in the health insurance exchanges. 2
Introduction Autism spectrum disorder (ASD) consists of several developmental brain conditions that were combined in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, (DSM 5) under one disorder. ASD was first observed in 1943 by Dr. Leo Kanner and first listed in the third edition of the DSM- III in 1980 (Lai, Lombardo, & Baron-Cohen, 2014). The DSM-III defined autism as impaired speech and social development beginning before 30 months of age. Under the DSM-IV, the definition of autism included autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS) and Asperger disorder. In 2013, the DSM 5 revised the definition to include the term spectrum to allow for the inclusion of more types of symptoms with differing degrees of severity (CDC, 2014). For the purposes of this paper, ASD will refer to autism and autism spectrum disorder. ASD prevalence has increased since early diagnoses, likely due to changes in diagnostic criteria and screening as well as changes in risk factors. When CDC began monitoring ASD prevalence in 2000, the Autism and Developmental Disabilities Monitoring Network (ADDM) observed an estimated total ASD prevalence among eight year olds of 6.7 per 1000 (CDC, 2014). In 2012, the total estimated prevalence across ADDM sites was 14.6 per 1,000 eight year olds, with an estimated 16.9 per 1000 eight year olds in North Carolina (CDC, 2016). In 2015, 1.06% of children enrolled in public school grades K-12 nationwide and 1.01% of children enrolled in North Carolina public schools were diagnosed with ASD (North Carolina Department of Health and Human Services, 2015). 3
The goals of this paper are to discuss the current state of private insurance coverage for ASD services for children under the age of 18, how North Carolina compares to the national picture and recommend policies to North Carolina policymakers to improve coverage of autism diagnosis and treatment services for its residents. Health insurance coverage for ASD The rising prevalence of ASD has led to an increasing need for screening, diagnostic and treatment services; however, health insurance coverage for these services varies significantly from state to state. ASD screening can be conducted as early as 6 months of age with diagnosis as early as 12 months (Boyd, Odom, Humphreys & Sam, 2010). Although federal public resources have emphasized parent awareness of warning signs, formal screening, assessment and treatment interventions at an early age have contributed to improved outcomes later in like (Boyd, Odom, Humphreys, & Sam, 2010).Once diagnosed, parents are faced with a plethora of potential treatment options including educational and behavioral interventions as well as pharmaceutical and medical treatments. These treatments are often implemented simultaneously, with changes as the child matures (Inglese, 2009). The cost of screening, diagnosis, and treatment can be very high, with the cost of behavioral therapy reaching over $35,000 per year (Bouder, Spielman, & Mandrell, 2009). Health insurance often covers the pharmaceutical and medical needs of the ASD pediatric population, but does not provide coverage for screening, diagnosis, and adaptive behavior treatments. As a result, many children with ASD have experienced higher health care costs with reduced access (Tregnago & Cheak-Zamora, 2012) 4
The Individuals with Disabilities Education Act (IDEA) was enacted in 1975 as the Education for All Handicapped Children Act. The 2004 reauthorization added Part C to support early intervention treatment services for children through age two, administered through state agencies. IDEA, Part C is a federal grant program that assists states in operating a comprehensive statewide program of early intervention services for infants and toddlers with disabilities, age birth through two years, and their families (U.S. Department of Education, 2016). States are required to comply with 17 statutory requirements to offer early intervention services to all infants and toddlers with disabilities. All 50 states participate in IDEA Part C but there is some variation in implementation across states including fee structures and varying eligibility requirements. Although IDEA Part C does support treatment and therapeutic services for children regardless of their insurance status, the services are only available through the age of two. Due to changes in funding, many states have adjusted their Part C programs to include free diagnostic and coordination of services, but have implemented insurance and fee structure requirements. As of December 31, 2015, 43 states, including North Carolina, have passed legislation mandating specific ASD insurance coverage. For the purposes of this discussion, a specific ASD insurance mandate consists of legislation or an administrative rule that explicitly requires insurance coverage for ASD. These mandates are not consistent from state to state and still leave significant gaps in coverage when viewed from a national perspective. 5
Current State of Insurance Coverage for ASD Stakeholders Parents of children with autism and autism advocacy groups such as Autism Speaks have taken the lead in advocating and lobbying for improved autism insurance coverage for children. Autism Speaks was founded in 2005 by Bob and Suzanne Wright, grandparents of a child with ASD, and has led the push to enact insurance mandates across the United States. Historically, children with autism have been underserved and underinsured relative to their needs (Young, Ruble & McGrew, 2009). Although Medicaid and other public insurance programs have covered many ASD services, private insurance left considerable gaps, leading to high out of pocket costs for families (Young, et al, 2009.) Vohra, Madhavan, Sambamoorthi, and St Peter (2014) observed that caregivers of children with ASD were more likely to report challenges accessing services and insufficient insurance coverage than caregivers of children with other disabilities. Insurance companies have been more resistant to autism insurance mandates as they are concerned about the potential cost, however, state legislators have been increasingly open to limited mandates. Many insurance companies have opposed specific autism insurance mandates, stating that they will result in high insurance premium increases; however, Boulder, Spielman and Mandell (2009) found that private insurance premiums increased 1% on average. In response to insurance industry concerns, specific insurance mandates may be limited to certain insurance policies or include age and cost caps as applicable. 6
Individuals with Disabilities Act IDEA, Part C established the Program for Infants and Toddlers. This program is a federal grant program that assists states in operating a comprehensive statewide program of early intervention services for infants and toddlers with disabilities, age birth through two years, and their families. States are required to comply with 17 statutory requirements to offer early intervention services to all infants and toddlers with disabilities, including Indian and homes infants and toddlers. All 50 states participate in IDEA Part C but there is some variation in implementation across states including fee structures and varying diagnosis eligibility requirements. Although IDEA Part C does support treatment and therapeutic services for children regardless of their insurance status, the services are only available through the age of two years. Each state is allowed to determine its eligibility requirements for their IDEA Part C program. As a result, there is significant variation across states in the specificity and type of developmental delay and/or diagnosis for Part C services. Most states categorize ASD as an eligible condition that has a high probability of resulting in a developmental delay but some states also require additional assessment demonstrating significant developmental delay (Rosenberg, Robinson, Shaw, & Ellison, 2012). Due to changes in funding, many states have adjusted their Part C programs to include free diagnostic and coordination of services, but have implemented insurance requirements and fee structure requirements. As of 2015, ten states required patients to use private insurance for Part C treatment services, if available, and twelve additional states charge a sliding fee to families who choose not to apply their insurance coverage 7
for Part C treatment services. State sliding fee scales are determined based on family income and family size and vary from state to state. In Connecticut, the fee scale range may range from zero for a family earning less than $45,000 annually to $544 per month for a family of two earning more than $150,000. In North Carolina, the scale is calculated as a percentage of the cost of services and varies from 20% - 100% of service costs or 5% of adjusted gross income (Public Consulting Group, 2011). As a result, it is difficult for a family to know which services will be covered through Part C federal or state resources and which services will require the use of insurance with out of pocket fees and deductibles. Autism insurance coverage mandates Currently, there are no federal laws requiring autism insurance coverage. The Patient Protection and Affordable Care Act (ACA) did not extend any specific benefits to individuals with ASD beyond the general benefits extended to all, such as eliminating lifetime dollar limits and eliminating pre-existing conditions ( ACA and Autism, 2015). Many states have enacted autism insurance coverage mandates requiring eligible insurance companies to provide coverage for the diagnosis and treatment of autism spectrum disorders. Prior to 2005, only one state, Indiana, had an autism insurance mandate in place (Johnson, Danis, & Hafner-Eaton, 2014). Most states included autism insurance and treatment in limited mandates designated to cover mental health and neurological conditions. These limited mandates often lacked coverage for behavioral treatments such as applied behavioral analysis. Applied behavioral analysis, which may include adaptive behavioral treatments, targets key developmental areas such as social-communication, interpersonal engagement, and response training (Lai, 8
Lombardo, & Baron-Cohen, 2014). Behavioral treatments improve the development of intelligence, communication and socialization skills that are important for daily living skills later in life. Specific autism mandates tend to include a broader range of diagnosis and treatment coverage, require coverage for children through the age of 6 with some mandates require coverage through the age of 18 or 21. Eligible insurance providers vary widely from state to state with some mandates including all insurance providers and plan types while others limit to specific provider groups or plans. Although the ACA removed lifetime coverage caps, adaptive behavioral treatments are not included as an ACA service and are commonly subject to cost or hourly caps. Table 1 includes a breakdown by state of eligible ages and cost caps associated with ASD insurance mandates. Age limit includes ages that are eligible for coverage under the insurance mandate. Cost caps refer to states that include a cap either as a maximum dollar amount or number of hours for applied behavioral analysis or adaptive behavior treatments. The dollar amount caps vary from $20,000 to $50,000 per year with two states including a lifetime maximum of $200,000. The annual dollar caps may be identical regardless of age with some states instituting increases and/or decreases depending on the age of the child. Baller et al (2015) observed that although many states have struggled with the implementation of autism insurance mandates, access to autism services have increased. In addition to increasing access to services, out of pocket costs have decreased (Parish, Thomas, Rose, Kilany and McConville, 2012). Autism insurance coverage in North Carolina North Carolina participates in IDEA Part C and enacted a specific autism insurance mandate in 2015. North Carolina s early intervention program is the North 9
Carolina Infant-Toddler Program. In 2013, 1.21% of infants and toddlers one year of age and younger and 2.81% of infants and toddlers three years of age and younger were enrolled in the Infant and Toddler Program. North Carolina provides evaluation, assessment and service coordination to eligible families at no cost, but provides any additional services on a sliding scale based on a percentage of the cost of services. The sliding fee is determined based upon adjusted gross income and family size. Participating families have the option of using private insurance for covered services (North Carolina Department of Health and Human Services, n.d.). North Carolina enacted Senate Bill 676: Autism Health Insurance Coverage on October 15, 2015 which became effective on January 1, 2016. North Carolina s mandate requires private group health benefit plans provided by employers with more than 100 employees and grandfathered individual plans to cover diagnosis, behavioral care, pharmacy care, psychiatric care, psychological care, therapeutic care and adaptive behavioral treatment of ASD for individuals 18 years old and younger. The mandate also restricts termination of insurance coverage because of an autism diagnosis. The North Carolina mandate includes an annual cap of $40,000 per year for adaptive behavioral treatment. The mandate does not apply to individual health insurance plans or plans purchased in the health insurance marketplace that is managed by the federal government. The State Employee s Health Plan is not included in the mandate, but has voluntarily offered autism insurance coverage since 2007. 10
Identifying Gaps in Insurance Coverage In order to assess the needs for broader insurance coverage, a series of questions and assumptions will be investigated using a literature review and review of state legislation. These include: 1. Where are the national gaps and variation in enacted autism insurance mandates? a. Assumption: Autism insurance mandates vary greatly from state to state, leaving gaps in coverage when viewed together. 2. How does North Carolina s autism insurance mandate compare to other states? a. Assumption: North Carolina is the most recent state to enact an autism insurance mandate and has taken a similar approach to existing mandates. Where are the national gaps and variation in enacted autism insurance mandates? As of December 31, 2015, 43 of 50 states have enacted specific ASD insurance mandates. Of the remaining states, two have enacted limited insurance mandates. There is significant inconsistency across all states with specific autism mandates. Thirty percent (13 of 43) of states have enacted mandates that are only applicable to private group health plans and do not include individually purchased plans. Seventy two percent of plans (31 of 43) require insurance coverage through at least the age of 18, with 16% (7 of 43) with no age limit for coverage. Finally, 69% (30 of 43) of states place caps on adaptive behavioral treatment coverage, whether annual or lifetime cost caps or caps on the number of hours of treatment. As a result, coverage varies significantly from state to state. 11
How does North Carolina s mandate compare to other states? North Carolina s mandate is one of the more inclusive mandates that have been enacted as the legislation includes several types of treatment, the age of eligibility is through age 18 and the cost cap for adaptive behavioral therapy is slightly above the mean. However, there are still significant gaps in the legislation. The legislation is limited to group health plans and specific individual health plans that were sold in the North Carolina prior to the implementation of the ACA. The State Employee Health Plan includes services voluntarily but is not included in the mandate. As a result, many families with individual plans sold after the implementation of the ACA are excluded from the mandate. North Carolina elected not to create a state run health insurance marketplace under the ACA and currently the health insurance marketplace is federally administered. As a result, North Carolina does not have authority to establish benefit requirements for insurance plans sold in the marketplace. Although the ACA includes ASD screening as a covered preventative service for children, it does not include any mandates for assessments or screenings for health insurance plans sold in the marketplace ( ACA and Autism, 2015). Health insurance providers may opt to include additional coverage in their plans, but the consumer will have to carefully research each plan to determine which, if any, provide coverage for ASD assessment and treatment. As the ASD mandate is implemented, it is likely that families that purchase individual insurance plans in the federally run health insurance exchange will not be included in the insurance mandate. It is possible that plans sold in the health insurance marketplace exchange will include autism insurance coverage; 12
however, those plans will not be required to meet the standards of the mandate, introducing additional variation of coverage and access to services. Discussion Although the majority of states have enacted ASD insurance mandates, when viewed as a whole there are still considerable gaps in covered populations and services. North Carolina s ASD insurance mandate provides broad coverage by age and cost, but leaves some gaps as the mandate does not apply to all private health insurance plans purchased in North Carolina. As the ASD mandate comes into effect, North Carolina should consider additional changes to ensure ASD services are available to all residents. Recommendations SB 676 was a strong beginning to expand access to ASD assessment and treatment services in North Carolina, but is limited by the types of plans that are included in the mandate. Currently, the ability to extend the ASD insurance mandate to all private insurance plans is limited by North Carolina s failure to administer its health insurance market place. To address this issue, North Carolina should expand its participation in the ACA health insurance exchanges in order to improve the overall access to autism services throughout the state. By operating an insurance exchange or working collaboratively with the federal exchange, North Carolina can expand the health insurance mandates to the 613,487 North Carolinians who are currently enrolled in marketplace purchased plans. Limitations 13
As the mandate is in the early stages of implementation, it is difficult to measure the percentage of the ASD population that will receive coverage from the mandates or identify the proportion of available health insurance plans that are included in the mandate. Assessments will be needed throughout the implementation to measure the proportion of the population that are impacted by the mandate and the impact on out of pocket consumer costs as well as any changes to insurance premiums over time as a result of the mandate. Conclusion North Carolina is in the early stages of implementing an autism insurance mandate and additional research must be done to assess the success of the mandate and determine effectiveness at reducing out of pocket costs and improving access for North Carolinians. An additional assessment will be needed to measure how many insurance plans are actually included in the mandate and the percentage of the ASD population who are included in those plans. Finally, it will be important to monitor how cost caps impact the use of adaptive behavioral treatments. 14
Tables Table 1. State Differences in ASD Mandates State Year of enactment Age limits Cost caps Alabama 2012 9 or under Y Alaska 2012 21 and under N Arizona 2008 16 and under Y Arkansas 2011 18 and under Y California 2011 none N Colorado 2009 none N Connecticut 2009 Under 21 Y Delaware 2012 Under 21 Y Florida 2010 18 and under Y Georgia 2015 6 and under Y Hawaii 2015 13 and under Y Illinois 2009 20 and under Y Indiana 2001 none N Iowa 2005; 2010 20 and under Y Kansas 2010 19 and under Y Kentucky 2010 21 and under Y Louisiana 2008; 2012 20 and under Y Maine 2010 5 and under Y Maryland 2014 18 and under N Massachusetts 2010 none N Michigan 2011 18 and under Y Minnesota 2013 18 and under N Mississippi 2015 Ages 2-8 Y Missouri 2010 18 and under Y Montana 2009 18 and under Y Nebraska 2014 20 and under Y Nevada 2009 18 and under; or until 22 if enrolled in high school N New Hampshire 2010 21 and under Y New Jersey 2009 21 and under Y New Mexico 2009 18 and under; or until 22 if enrolled in high school Y 15
New York 2011 None Y North Carolina 2015 18 and under Y Oregon 2013 None Y Pennsylvania 2008 under 21 Y Rhode Island 2011; 2012 under 15 Y South Carolina 2007 under 16 Y Texas 2007 9 and under N Utah 2014 ages 2-9 Y Vermont 2009 under 21 N Virginia 2011 ages 2-6 N Washington 2014 None West Virginia 2011 18 months - 18 years Y Wisconsin 2009 None N Source: Internet searches and review of the scope of the legislation for each state 16
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