The treatment of patients with autism spectrum disorders (ASDs) and their various complications has become one of the most discussed and demanded insurance coverage mandates in multiple states. Insurance mandates are being heavily pushed by advocacy groups, especially Autism Speaks, with good success. In the past few months, Iowa, Kansas, and Kentucky have passed bills mandating health insurers to cover individuals with ASDs for speech therapy, occupational therapy, physical therapy, and an intensive behavioral therapy that is called applied behavioral analysis (ABA).1
However, it is yet to be determined whether—and to what extent—ASDs are health-related conditions as opposed to educational challenges. Whether or not a mandate for insurers to provide coverage for these treatments will be affordable is also a great concern.
A Growing Dilemma
ASDs are complex developmental disabilities that typically appear during a child’s first 3 years of life, affecting a child’s ability to communicate and interact. The spectrum concept derives from the differences in how the syndrome presents itself and varying symptom severity.
Prevalence. According to a CDC report from December 2009, in 2006, an ASD was diagnosed in fewer than 1% of children—or 1 in every 110 children (for boys, the prevalence was 1 in 70).2 This represents a staggering 57% increase from 2002 to 2006, and a 600% increase in just the past 20 years.
A broader definition of ASDs does not account for the increase, although the improved and earlier diagnosis accounts for some. Thus, a true increase in the risk of ASDs cannot be ruled out. The recent CDC study used the same methodology that produced the CDC’s 2007 prevalence findings of 1 in 150 children with ASDs.
Symptoms. Signs of ASDs include lack of or delay in spoken language, little or no eye contact, and a lack of interest in peer relationships. Repetitive use of language and/or motor mannerisms such as hand flapping or twirling objects may also be seen. In addition, children may exhibit a lack of spontaneous or make-believe play and a persistent fixation on parts of objects.
Studies have shown that in identical twins, if one of them has an ASD, the other will be affected about 60% to 96% of the time. In fraternal twins, when one of them has an ASD, the other is affected up to 24% of the time. Parents who have a child with an ASD have a 2% to 8% chance of having a second child who is also affected.3
It is estimated that about 10% of children with an ASD have an identifiable genetic (such as fragile X syndrome or Down syndrome), neurological, or metabolic disorder. A report published by the CDC in 2007 shows that 30% to 51% of the children with an ASD also had an intellectual disability (IQ of 70 or lower). Girls were more likely than boys (58.2% and 41.8%, respectively; P < .001) to have IQ scores in the range of cognitive impairment.4 However, many persons with ASDs have great intelligence, with capabilities that are extraordinary, even while their behavioral patterns and socialization may not be normal.
Asperger disorder and DSM5. Asperger disorder is also characterized by severe sustained impairment in social interaction and development of restricted patterns of behavior, interests, and activities. Unlike persons with ASDs, those with Asperger disorder do not experience delays in language acquisition or in cognitive development. Those with the disorder rarely have any form of mental retardation.
Characteristically, patients with Asperger disorder appear odd to others. They frequently do not pick up on social cues and their interactions are one-sided, focused entirely on their own interests with little empathy for or understanding of the other person as an individual. They may be intensely focused on one topic, with exclusion of all other interests. But unlike those with ASDs, patients with Asperger disorder desire social interaction—they just are not sure how to do it. Often they are loners, not always because of their own wishes but because of their peers’ inability to tolerate their behavior.
DSM5 proposes the elimination of a separate designation for Asperger disorder. Instead, Asperger disorder would be incorporated within the ASD criteria. The rationale is that there is no clear boundary between the disorders. ASDs will be more conveniently seen as one disorder presenting with different levels of severity.5
Mandates for Treatment
At the time this article was written, 19 states had legislative mandates for ASD care coverage by health plans (Figure). In addition, most of the other states have a serious initiative under way.1 Most legislation has included language suggested by Autism Speaks, the largest and most influential advocacy group. This legislation spells out 4 key treatment modalities that require coverage: ABA, occupational therapy, physical therapy, and speech therapy.
ABA. This treatment is based on educational techniques to modify dysfunctional behaviors. Without behavioral intervention, the concern is not only that individuals will not be able to fit into society but also that they will tend to regress and even lose skills.
ABA methods are used to improve behaviors and teach new skills (Box).6 Through ABA training, parents and other caregivers learn to identify what in the child’s environment may trigger or reinforce behaviors. Whereas cuddling might calm down some children, a child with an ASD might find such physical closeness frightening and react with increased temper tantrums. Instead, other behaviors might be found that calm a child with an ASD, such as leaving the room or drawing the shades.
Most often, a certified behavior analyst or psychologist develops a treatment plan and oversees the treatments, while a parent, counselor, or aide performs the actual interventions. ABA techniques include careful behavioral observation and positive reinforcement and prompting.
Supporters of ABA argue that in many cases, 2 or 3 years of intensive treatment when the autistic child is young could help him or her develop into a teenager and adult who can largely care for himself.
However, in 2009, the BlueCross BlueShield Association’s Technology Evaluation Center released a special report concerning intensive behavioral interventions (including ABA) for children with ASDs. Their systematic review of 16 published studies concluded that “based on the weakness of the available evidence, we are uncertain about the effectiveness of early intensive behavior interventions for ASDs.”
The report also warns about the “opportunity costs” of proceeding down a very expensive road when it is not yet clear that this is the best form of intervention. “If we accept an intervention because it seems to work, without solid evidence, research on the alternatives or on how it can be improved is likely to be stifled,” wrote the authors.7
The American Academy of Pediatrics calls ABA an educational intervention, as opposed to a medical treatment.
Occupational therapy. Occupational therapy is often used to treat patients with ASDs. Through this treatment, patients may improve independent function and learn basic skills such as buttoning a shirt, tying shoelaces, or using the shower knobs.
Physical therapy. Physical therapy involves exercise and other measures, such as heat and massage, to help patients use their limbs and other body parts to control body movement effectively. It is most often used when the autistic person has associated medical conditions, such as cerebral palsy.
Speech therapy. Speech therapy is used to improve comprehension, expression, sound production, and the social use of language. It needs to be tailored to the specific weaknesses and problems of the individual autistic person.
Rising Costs and Other Concerns
Without a state mandate, most health insurance companies classify treatment of ASDs as behavioral and not medically necessary.
Various issues in the coverage mandates concern health plans. One issue is whether they can actually manage care, given legislative language that often seems to obviate their role by declaring that any care authorized by a physician or psychologist is automatically deemed “medically necessary.” There is also great concern about the adequate supply and qualifications of providers to treat patients with ASDs, especially those involved with administering ABA.
In addition, health plans worry that they are being thrust into an area that has previously been funded by school districts. Under the federal Individuals with Disabilities Education Act, early intervention and special education programs must provide services for children with ASDs. Health plans wonder whether mandated health insurance coverage for ASD is merely a cost shift from the education budget to the medical budget?
Finally, ASDs generally fall into a disability category that requires long-term care, an area not usually covered by health insurance. If the child with an ASD suffers from pneumonia or breaks a leg, health insurance should cover the treatment. However, if health insurance also becomes disability and long-term–care insurance, the cost will become completely unreasonable.
Employer concerns. Because employers pay much of the health insurance premium, they are naturally concerned about a new mandate requiring increasing expenditures. Small and medium-sized businesses are particularly at risk because they purchase insurance coverage through health carriers subject to state laws. Large-business employers, in contrast, are able to self-insure and may avoid covering certain state-mandated benefits because they are covered by federal Employee Retirement Income Security Act laws rather than by individual states.
Cost estimates. Since most of the insurance mandates are quite new, there is relatively little claims experience to inform the discussion about real costs to the health plans. In addition, there are differences in the specifics of the mandated coverage. Several states, including Louisiana and Pennsylvania, require $36,000 in annual coverage for ABA. However, intensive ABA services may be up to 40 hours per week for years and may cost over $50,000 per year. Louisiana cuts off coverage for ABA at age 16 and caps lifetime expenditures at $144,000; Pennsylvania requires coverage until age 21 and has no lifetime expenditure limit.
Other states—such as Massachusetts, in which legislation has been proposed—have no age limits and no cost limits. Coverage for these treatments has been deemed “medically necessary” as long as treatment is prescribed by a licensed physician or licensed psychologist.
Premiums expected to rise. In terms of the increased premiums directly related to these mandates, proponents in Pennsylvania submitted information from several cost studies that indicate coverage adds about 1% to the cost of premiums. It has been projected that the Pennsylvania coverage would produce only a $1 increase in insurance premiums per member per month, using a somewhat different set of assumptions about cost savings and utilization.8
In Missouri, proponents of a bill to mandate this coverage said a boost in insurance premiums would be minuscule, whereas David Smith, a lobbyist for Anthem Blue Cross and Blue Shield, said that statistics show an increase of up to 3% per member per month.9
In Massachusetts, the proposed mandate bill would cost insurance companies from $1.22 to $2.45 per member per month, according to a review by the State Division of Health Care Finance and Policy.10
In Virginia, a recent bill authorizing an insurance mandate failed because many legislators were troubled that the bill mandated coverage for private employee health plans but excluded state employees until 2015, a concession to a $4 billion shortfall looming in the 2011 and 2012 state budgets. As one legislator put it, “Frankly, businesses are at the breaking point. If the state can’t afford it today, what makes you think small businesses can.”11
During his campaign, President Obama committed to providing $1 billion of annual federal spending on ASDs by 2012. In October 2009, he identified ASDs as one of his administration’s top 3 public health priorities.
The new federal health insurance reform legislation calls for an end to insurance marketplace discrimination. The essential benefits that all qualified health plans must cover (but not grandfathered plans or self-insured plans) include mental health care; “habilitative” and “maintenance services”; and behavioral health treatments, including ABA therapy. Annual and lifetime benefit caps would be prohibited.12
Although the new health reform legislation provides coverage for more families caring for patients with an ASD, groups such as Autism Speaks continue their fight for insurance mandates in each state. “There is still much work to be done in state legislatures and in Congress to make effective health care coverage a reality for the autism community and to bring about an end to discrimination of individuals with autism by the insurance industry,” said the group in a release.13
Congress is also considering mandate legislation, the Autism Treatment Acceleration Act (S 819), which was introduced in 2009 in the Senate with a similar version (HR 2413) pending in the House of Representatives. If enacted, this federal legislation would require insurance companies across the country to provide coverage for diagnosing ASDs and for treating patients with the disorders.