Research has shown that early intervention is necessary for individuals who have ASD, and the leading treatment for ASD is early intensive behavior therapy based on the principles of ABA . Numerous studies have provided empirical evidence for the effectiveness of this approach for children with ASD, documenting substantial gains in functioning and the potential loss of the diagnosis altogether (Boyd and Corley 2001; Birnbrauer and Leach 1993; Cohen et al. 2006; Fein et al. 2013; Howard et al. 2005; Lovaas 1987; McEachin et al. 1993; Sallows and Graupner 2005; Smith et al. 2000).

With an early diagnosis, the optimal intensity of ABA-based therapy may be as much as 35–40 h per week, which is estimated to cost between US$ 40,000 and US$ 60,000 when provided in the home (Chasson et al. 2007), with some programs costing as much as US$ 100,000 per year (Zane et al. 2009). Typically, a child who begins an ABA program at the age of three will require at least 3–5 years of treatment (Jacobson et al. 1998), costing a minimum of US$ 120,000 before the child reaches middle school, and children with ASD often continue ABA treatment programs well into adolescence. These estimates are based on a 35–40-h-per-week program, and ultimately, the annual cost of an ABA treatment program will depend on multiple factors, including the agency providing the services, where the services are provided (home, center, school, or hospital), the experience of the individuals providing treatment, and the number of hours provided per week of 1:1 therapy.

According to a report of special education spending by the Center for Special Education Finance for 1999–2000, special education services cost an average of US$ 12,639 per student. When compared to students receiving general education services, it was estimated that a special education student’s expenditures were 2.8 times more per year (Center for Special Education Finance 2004). More recently, in a paper on the cost comparison of special education and behavioral intervention services, Chasson et al. (2007) reported the annual cost of special education services in Texas to be approximately US$ 11,000 per child. The cost of behaviorally based educational services is likely to be much higher in school districts that provide ABA-based interventions, such as discrete trial training (DTT) , on a 1:1 or 1:2 ratio within the classroom and when additional staff trainings are required .

Although occupational therapy (OT) and speech therapy are typically provided by a school district and included in the annual cost of special education services, individuals who choose to pay privately for these services face substantial costs. The average cost of OT services can range from US$ 50 to US$ 400 per hour, depending on the individual needs of each client, and speech therapy typically costs from US$ 100 to US$ 250 per hour (Treatment 2010). Chasson and colleagues’ (2007) comparison of the cost of 18 years of special education services to the costs associated with early intensive ABA indicated that, in the state of Texas, 3 years of ABA could result in a savings of US$ 208,500 per child. Although the initial cost of 3 years of ABA is greater than the first 3 years of special education services, the early investment in ABA substantially reduces costs over the next 15 years. Lifetime cost-benefit analyses of early intensive behavior therapy will be discussed later in the chapter .

Various interventions have been developed as treatments for children with ASD. Some of these interventions have foundations in empirically supported research, and others have not been extensively evaluated to determine their efficacy. These interventions include the Son-Rise Program, Social Communication/Emotional Regulation/Transactional Support (SCRETS), Early Start Denver Model, Floortime, and Training and Education of Autistic and Related Communication Handicapped Children (TEACCH) , among others. The costs of these treatments vary widely depending on the program length, intensity, and the type of professional implementing the intervention. For example, Floortime sessions at Rush University Medical Center cost US$ 125–US$ 150 per 1-h session (Rush University Medical Center n.d.), and the Son-Rise Program provides a start-up course that costs US$ 2,200 for a 5-day group training program (Autism Treatment Center of America 2012).

While these interventions have some research showing improvements, they generally do not have empirical support to the same extent as early intensive ABA-based interventions. According to the National Standards Project, a report developed by the National Autism Center that categorizes interventions aimed at individuals with autism based on the amount of empirical support, the intervention strategies incorporated into most early intensive ABA programs are considered established treatments (National Autism Center 2009). Moving forward, with limited resources to cover treatment costs for a growing number of individuals with ASD, it is imperative that local, state, and federal policies and funding sanction those interventions with substantial empirical support, specifically early intensive ABA-based interventions.

The heterogeneity that characterizes ASD has hindered the development of adequate systems of care for individuals with ASD, who require a broad array of individualized services, often throughout their lifespan. The public policies, guidelines, and legislation intended to address the health care needs of individuals with ASD have, instead, created a tangled patchwork of laws and policies that morphs from state to state, confusing even the experts who are trained to decipher such anomalies. Parents and caregivers routinely find themselves appealing denials of service and citing legislation to the very individuals charged with enacting it long before such legislation manifests itself as tangible services for individuals with ASD.

The Centers for Medicare & Medicaid Services (CMS) ASD Services Project described what it called the “siloed fragmentation of state health and human services programs” in its Report on State Services to Individuals with Autism Spectrum Disorders (ASD):

While screening and diagnostic services may be funded by Title XIX of the Social Security Act (Act) under state Medicaid programs and delivered by pediatric or primary medical care practitioners, for example, prevention and early intervention services may be funded by Title V/Maternal and Child Health under the aegis of departments of public health. Other early treatment services may involve funds and programs from departments of mental health and/or developmental disabilities services and by departments of education implementing the Individuals with Disabilities Education Act (IDEA) mandates and child welfare agency services.

This lack of a single cohesive resource for services has caused widespread disparity in treatment funding, as well as funding for additional services, which is often disproportionately distributed to those who have the time, education, and resources to pursue it. Furthermore, recently enacted state mandates requiring private insurance carriers to provide ABA for children with ASD, as well as the Patient Protection and Affordable Care Act (PPACA)’s “essential health benefits,” which took effect in 2014, may potentially create enormous disparity between the treatment received by a privately insured child with ASD versus the treatment provided to a child receiving publicly funded health care benefits.

Since the 1990s, insurance companies and federal and state agencies have funded treatment for children with autism to address health care issues that are commonly associated with developmental disabilities in general, including speech therapy, OT, prescriptions, and doctor visits. Early intensive behavioral intervention (EIBI) using ABA, however, has consistently been excluded from most health care benefits. Private insurers and states often justify its exclusion by citing a lack of evidence to support its effectiveness, by claiming that behavioral therapy is experimental, and/or by characterizing ABA as educational and, therefore, not a medical treatment (Blue Cross Blue Shield Technology Evaluation Center 2009). Often, lengthy litigation becomes the sole recourse for families whose insurance carriers have denied medically necessary behavioral health care treatment for their children with ASD.

Christopher E. Angelo, Esq., a litigation attorney and advocate for the rights of the developmentally disabled, educates parents throughout the USA in “perfecting medical insurance coverage” (Angelo 2012). In many instances, parents have compelled private insurance companies to pay for costly intensive behavioral and other treatments using Angelo’s free legal pamphlet, The Law of HMO/PPO Special Needs State Mandates, based in part on legal precedent he established in Broughton v. Cigna Healthcare Plans (1999). Angelo successfully asserted for his own son that the consecutive hours and structured environment which are so fundamental to intensive behavioral intervention more closely resemble the confinement associated with “hospitalization” for which benefits are unlimited. Angelo’s pioneering efforts to compel insurance companies to pay for intensive behavioral therapy within the context of “partial hospitalization” are likely somewhat responsible for the recent willingness of some insurance companies to cover comparatively less costly outpatient behavioral health treatments.

Even as some states and insurance companies have begun to recognize the medical necessity of ABA for children with ASD, stories of arbitrary denial of ABA treatment are plentiful and continue to give rise to groundbreaking legislation. As recently as March 2012, the US District Court (Southern District) in Florida issued an Order enjoining Florida’s Medicaid program from enforcing a state rule that excluded ABA treatment for minors with autism and compelling the State of Florida to “provide, fund, and authorize Applied Behavioral Analysis treatment to …all Medicaid eligible persons under the age of 21 in Florida who have been diagnosed with autism or Autism Spectrum Disorder” (K.G. v Dudek 2012).

The judge in K.G. v. Dudek ruled that “…paying for the cost of ABA for autistic children will ultimately save the public funds …” because many children with ASD who do not receive ABA become adults who are totally dependent on community and government services (K.G. v Dudek 2012). While a treatment plan with 30–35 h of ABA treatment per week costs as much as US$ 50,000 a year, research published by Harvard University’s School of Public Health demonstrates that 3–5 years of intensive behavioral intervention represents a savings to society of nearly US$ 3,000,000 per capita when that treatment enables a child to grow into an independent, contributing member of the society (Ganz 2007). Indeed, Ganz (2007) calculated direct, indirect, medical, nonmedical, and loss of earnings potential across the lifespan to conclude that, on average, an individual with ASD can potentially cost US$ 3.2 million over his or her lifetime. Moreover, in a joint study between University of Pennsylvania and the London School of Economics and Political Science, David Mandell, Sc.D., and Martin RJ Knapp, Ph.D., estimate the annual economic cost of autism in the USA at US$ 126 billion per year (Knapp et al. 2012).

Since the 1970s, as states have identified the cost-effectiveness of policies that keep children with ASD at home with their families and out of institutions, comprehensive community-based care systems have played integral roles in providing and/or coordinating services for individuals with ASD. Individuals with ASD and their families rely on these systems in conjunction with public schools to obtain the services they require. Until recently, when some states began mandating private insurers to provide coverage for ABA, a greater number of children with ASD (46 %) utilized public insurance to obtain the health services they required when compared to children with other disabilities (Liptak et al. 2006).