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Pervasive Developmental Disorders

When you choose an insurance company or HMO, do your best to assess its attitude toward PDDs in advance.

PDDs are eminently treatable.

Parents need to...take steps to successfully appeal such blanket denials of care.

If the company provides some treatment...but only as part of a limited mental health...benefit, you can also challenge that limitation.

Maintaining continuous coverage is critical to avoid being locked out of healthcare due to pre-existing conditions.

Insurance and PDDs

The following excerpt is taken from Chapter 8 of Pervasive Developmental Disorders: Finding a Diagnosis and Getting Help by Mitzi Waltz, copyright 1999 by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.
Pervasive developmental disorders are not easily treated with medications alone. One-on-one therapeutic intervention, and often major lifestyle changes such as special diets, should be part of a well-rounded treatment plan. Treatment will be a long-term affair. Unfortunately for patients and their families, paying for this amount of healthcare is expensive. Insurance should help, as it does for other major medical expenses, but as we shall see, that's not always the case.

An insurance company's perspective on PDDs

First, you need to know what you're up against. PacifiCare Health Systems, Inc., headquartered in Santa Ana, California, offers health plans in fourteen US states and on the island of Guam. As major US insurance companies go, it is fairly typical--not the worst, not the best. Dr. Ellen Betts, clinical supervisor for western region outpatient services for PacifiCare Behavioral Health, Inc., provided very clear insights into the way insurance companies and managed care entities look at PDDs.

"Because there is no recognized cure for pervasive developmental disorders, direct treatment is no longer included in the benefits," she says. "The qualifier is that we know there are some interventions that contribute to a higher quality of life. There are medications that are prescribed to help with symptoms, and we would reimburse a psychiatrist to help with some of the medication issues. We would not cover any kind of psychological testing to rule in or rule out a PDD. That's primarily because that kind of testing is usually available through the school system or regional centers." Most major insurers take a similar position, although a few will not fund any interventions at all.

Dr. Betts says she is aware that funding for school-based programs and regional centers has been cut back significantly in recent years. "It's become a gaping hole between [insurance companies and public resources], and an increasing societal problem," she observes.

After reading the last few chapters of this book, you're probably surprised to learn that insurance companies feel free to ignore the proven, long-term clinical track record of ABA, floor-time play therapy, and other interventions for PDDs--interventions with better success rates than many treatments for cancer and heart disease that are routinely covered by insurance. "Thus far, that is still not recognized per se by the insurance companies," says Betts, about ABA in particular. "They would probably put that in the category of `experimental treatments.'"

PacifiCare does make long-term therapeutic services available for schizophrenia and other neurobiological disorders, however, including full and partial hospitalization programs. "The rationale behind that is that, with the proper medication and proper compliance, as well as whatever rehabilitation services are available, a person with schizophrenia could be a productive, tax-paying member of society," said Dr. Betts. "That's not applicable to pervasive developmental disorders."

It should be noted here that the prognosis for schizophrenia is not terribly different from that of PDDs: only one-fourth are expected to experience complete remission, while one-tenth will probably commit suicide. Of the remainder, most will continue through life with mild to moderate symptoms, while the rest struggle with severe, chronic schizophrenia. It should also be noted that a great many people with PDDs are "productive, tax-paying members of society"--some of whom are probably reading this book!

As for legislative efforts, Dr. Betts notes that when California legislators first proposed a state mental health parity law, autism was included in the list of covered diagnoses--but was later removed from the listed conditions to make the law more financially palatable. "I do think that with the mental health parity laws being passed state by state, it will have an exceedingly major impact on the industry," she adds.

Dr. Betts did have some pointers for parents whose children have a disability that their insurance company classifies as psychiatric or "behavioral." The most difficult companies to deal with will be those that have a "carve-out" for mental healthcare, she cautions. This means insurance companies and HMO-style plans that do not provide mental healthcare themselves, but instead refer patients to an outside provider. "When they outsource for mental health benefits, that imposes a risk for individuals with those diagnoses to fall between the cracks. You can end up in these protracted debates between the major medical carrier and the mental health carrier. When you have a totally integrated HMO, like Kaiser, you could have a very different experience," she adds. Neurobiological disorders like PDDs are a gray area, because they are medically based illnesses with psychiatric symptoms. Your insurer, your HMO, and any outside mental-health providers may argue with each other about what kind of care is needed, who should deliver it, and who will pay for it. Meanwhile, you may go without any care at all.

Dr. Betts says that, like most clinical specialists, she is well aware that doctors try to get around insurance restrictions by giving the patient an alternative primary diagnosis that is covered, and perhaps adding PDD-NOS or atypical PDD as the secondary or tertiary diagnosis. Then physicians can say they are actually treating the covered diagnosis.

One bright spot in insurance company practice is a move toward integrated case management, says Dr. Betts. PacifiCare, for example, is instituting a new program called the Assertive Case Management model. "Managed care entities are backing off on micromanagement of mental healthcare, and concentrating on severe mental illness," she says. "[Our] new clinical model will? take a holistic social services approach. That means coordinating care with child protective services, social welfare agencies, the school system, parents, clergy, social workers, and others." This model will include weekly contact between patient or parent and a permanent case manager.

Insurance companies show their feelings about autistic spectrum disorders in many ways. For example, PacifiCare's health education office does not have written material available for parents of children with autism or related disorders, nor does it provide educational materials for adult patients in this class, as it does for patients with Alzheimer's, breast cancer, and other conditions. This is the case with almost all major insurers and HMOs. Despite the increasing prevalence of these disorders, they haven't put much thought into how they might better respond, or how families can be supported with accurate and timely information.

When you choose an insurance company or HMO, do your best to assess its attitude toward PDDs in advance. You may be surprised at what you learn.

The coverage question

In the US and other countries where private medical insurance is the norm, the insurance system can be hard to deal with under the best of circumstances. Each company in the industry offers multiple plans with various rates and benefits, and there's no central oversight. And as Dr. Betts explained, patients with PDDs and their families are often hit with an unpleasant post-diagnostic surprise: many insurance plans specifically refuse to cover autism, pervasive developmental disorders, any mental or neurological disorder, or any condition they deem "developmental" or "incurable."

We do not have any insurance coverage. We are getting by with the bare minimum healthcare. Due to this situation we have never taken Nicole to a developmental specialist or neurologist, though we would like to. --Robin, mother of five-year-old Nicole (diagnosed mild autism)
Others cover these conditions in a substandard way. For example, they may cover only short-term therapy programs. They may refuse coverage for necessary speech therapy, occupational therapy, or physical therapy. They may have no qualified "in-plan" practitioners but refuse to make outside referrals, or they may call PDD-NOS or atypical PDD a mental health issue rather than a medical problem, and limit coverage accordingly.

It's mostly about money, but to some extent it's also about outdated medical notions. Take, for example, the words developmental disorder. What this term really means is a medical condition that skews the process of normal child development. Doctors use it as a euphemism for mental retardation, and also to describe a wide variety of neurological, metabolic, and chromosomal disorders that emerge in childhood. Insurance companies, however, seem to think that developmental disorders are temporary conditions that the child will grow out of. Accordingly, this term is commonly found on lists of conditions excluded from coverage.

The idea that pervasive developmental disorders are incurable, and therefore not worthy of treatment, also persists, as Dr. Betts's comments made abundantly clear. If your insurance company tries this tactic, tell it that its position makes no sense, since the same standard is not applied to other conditions. For ammunition, you might ask the company what coverage is provided for children born with spina bifida. Spina bifida is a birth defect of the neural tube. It is incurable, but thanks to modern medical technology, children with spina bifida can now live long and productive lives. Most will need multiple operations and physical therapy, and many will need a wheelchair or other orthopedic equipment. Few insurance companies have the gall to refuse coverage for this incurable, but treatable, condition. Asthma, epilepsy, and diabetes are even more common conditions that are incurable, but treatable.

You can buttress your arguments by bringing copies or abstracts of pertinent medical studies, information from the National Institutes of Health or other official government sources, or books like this one with you when you argue your case for coverage.

PDDs are eminently treatable. There are many medically validated treatments available, including medications for specific symptoms, speech therapy, occupational therapy, ABA, floor-time play therapy, and in some cases nutritional or metabolic interventions. The success rate of early intervention using either ABA or floor-time techniques alone exceeds that of many medical treatments for other conditions that your insurance would probably cover without question. If you add more interventions to the picture, the chances of a good outcome will most likely be even brighter.

Treatment and the law

In the US, both case law and state legislation may support parents who say that treatment for autism and related disorders should be covered by their health insurance. For example, the 1988 case Kunin v. Benefit Trust Life Insurance Co., which was settled in the federal court in California and later affirmed by the United States Court of Appeals for the Ninth Circuit, established that, because autism has organic causes, it is not a mental illness and so cannot be used as a basis for denying or limiting insurance benefits. Cases in other states have affirmed this conclusion in relation to other neurological disorders.

Christopher Angelo, a consumer and plaintiff's trial attorney with the Los Angeles firm Mazursky, Schwartz, and Angelo, is all too familiar with the insurance problems experienced by people with autistic spectrum disorders. Angelo is the father of an autistic son, and also the author of the Autism Society of America's booklet, For Our Children: A Lawyer's Guide to Insurance Coverage and a Parent's Call to Organize.

About 90 to 95 percent of insurance companies refuse outright to cover treatment for pervasive developmental disorders, according to Angelo, although most will cover the cost of the initial diagnosis. Their refusal is rarely legal, and never ethical, he adds. Parents need to know this and take steps to successfully appeal such blanket denials of care. Begin by asking for a copy of the denial of coverage or services in writing. Make sure that the reason you were given verbally is also the reason given in this written denial.

Your next stop is the insurance company's own documents. You'll need a copy of the health plan's master policy (See "Managing managed care," later in this chapter). Somewhere in its fine print you will probably find a provision stating that, if any of the company's policies are unenforceable based on state law, they cannot be asserted. Most insurance company claims adjusters know very little about state insurance law. Your job is to educate yourself, and then educate them.

Now you need to find out what your state says about pervasive developmental disorders and autism. The answer may be found in actual legislation. For example, Angelo notes, California's state legislature has specifically declared that as illnesses with organic causes, PDDs, bipolar disorder, schizophrenia, and many other "mental illnesses" are to be considered medical conditions under the law. Your state may have similar laws or public policies on the books, possibly within state mental health parity laws or in laws protecting the disabled against discrimination. Your state's insurance commission--every state has its own, there's no federal insurance commission--will also have policy statements. Remember, actual state law trumps policy statements every time. State laws may be more restrictive than federal regulations, in which case the state prevails. If state laws are less restrictive than federal mandates, the federal government prevails.

Your state's chapter of the Autism Society of America or other disability advocacy organizations may already have the information you need on hand. The ARC (Association of Retarded Citizens) is one of the largest and best-organized advocacy groups and may be able to help you right away. Nonprofit disability law services, some of which are listed in Appendix B, Support and Advocacy, are another good resource.

If no one seems to know the status of insurance law and PDDs in your state, you'll have to start researching on your own. If you have Internet access, state laws, some public policies, and possibly insurance commission decisions may be available online. You could also call your state representative's office and ask a staff member to research this issue for you. Insurance commission staff members should also be able to help you.

What you learn may be quite enlightening. For Angelo, research into applicable state laws led to a high-profile case, Broughton v. CIGNA. Angelo said he hopes this case will ensure that all US parents and patients have a right to appeal arbitrary and illegal healthcare restrictions in court. "If I continue to win Broughton, HMOs and insurance companies will have to change their practices not only statewide but nationwide," he said. The Broughton case, currently in litigation, may indeed yield the landmark decision that thwarted healthcare consumers have been waiting for.

Angelo's innovative case hinges on laws against discriminatory business practices that most US states adopted after civic unrest rocked several major cities in 1967. In California, this law is called the Consumer Legal Remedies Act. It prevents consumers from signing away their right to sue for relief in court when they are discriminated against by a business. Disability is a protected class under law, as are race, sex, and age. Many insurance companies say consumers can't force them to cover certain conditions, and push unhappy customers into internal appeals procedures and then arbitration instead of court. Under the Consumer Legal Remedies Act and similar state laws, this practice appears to be illegal.

If you can show your insurance company that it is trying to assert a provision that violates a state mandate, it should back down and provide treatment.

Legal arguments of the sort needed to secure coverage can be hard for a layperson to craft. Advocacy groups may be able to help you write a well-written and persuasive letter of appeal on legal grounds.

Incidentally, Angelo adds, formal arbitration is rarely a viable solution. "Arbitration is a stacked deck," he says. "Arbitrators on average get paid $400,000 per year by healthcare plans, which only continue to use those arbitrators on stipulation. If it gets one arbitration decision it doesn't like, it stops using that arbitrator." Consumers are also unable to recover their costs in arbitration, which can range upwards of $50,000. Most consumer-law cases in the courts are taken by lawyers who work on contingency, so it's hard to secure legal help for an arbitration.

The mental health exemption

If the company provides some treatment for PDDs, but only as part of a limited mental health or nervous disorders benefit, you can also challenge that limitation. It's easy to show that autistic spectrum disorders are biologically based, so you may be able to get out from under the mental health limit altogether.

One piece of information to gather in advance is how the company treats acquired nervous-system disorders, such as stroke, brain tumors, or traumatic brain injuries. If your insurance covers long-term care for these conditions, most states mandate equal benefits for patients with biologically based brain disorders.

Incidentally, a neurologist may be your best witness. Most people with PDDs have concrete signs of neurological dysfunction, which can't be written off as simply psychological. Some parents have successfully asserted that their child is the victim of an acquired brain disorder, based on the child having developed normally and then regressed; on a documented reaction to a vaccine, medication, or environmental toxin; or on the basis of tests that show anti-myelin antibodies or other substances in the blood.

And, as Angelo noted, some states specifically exempt PDDs from mental health limits.

The educational services exemption

After blanket denial of coverage, says Angelo, the second most frequent insurance roadblock is the educational services exclusion. "They'll say, `We don't have to pay to teach your child how to speak, because that's education,'" he explains. "However, if a teacher wants to be a speech therapist, it requires a healthcare license in all fifty states, not just a teaching credential."

I have insurance, but as of yet I have not been able to get coverage for any speech therapy. I am now spending approximately $250 a week [for a speech-centered home ABA program]. That does not include anything that I purchase for her learning, that's just payroll. --Sarah, mother of two-year-old Elaine (diagnosed PDD-NOS)
Angelo encourages parents to work with their Early Intervention providers and school systems to force health insurers to pay for speech therapy, physical therapy, occupational therapy, home-and-hospital programs, and other services that must legally be delivered by healthcare professionals. He feels that schools should bill parents' health insurance for these services and sue if the insurer refuses to pay.

He notes that school districts, state healthcare programs, and the federal government are logical allies in the fight to force insurers to do their share. "When insurers won't pay, the consumer then goes to overworked, underfunded taxpayer programs, like Social Security Disability, Medicare, the schools, regional centers, etc., to try to get funding for speech, OT, recreational therapy, partial hospitalization programs, and more, all of which should have been covered by the healthcare system. As soon as healthcare companies realize that passing the buck wrongfully to school districts and other public programs will cost them, they will start training their claims adjusters in state law," he says.

For now, however, Angelo's last bit of advice may be problematic for parents. Only in the past two years or so have major school districts begun to attempt billing insurers for services provided in school settings. Many parents rightfully fear that denial of payment will lead to denial of services by the school district--it is illegal, but lack of funds is one of the most frequent excuses given for refusal of needed special education services. Parents who have been persistent enough to get therapeutic services from both the school district and their insurance company are afraid that their services will be cut in half, not augmented. And since schools and medical facilities generally have very different approaches to therapeutic interventions, this could be detrimental in other ways.

You can sometimes challenge denial of therapeutic services by explaining that speech or other therapeutic goals are essential activities of everyday life, useful not only in school but for functioning in the larger world. This "essential activities of everyday life" rationale is what people with orthopedic disabilities use to get the therapies they need covered by insurance.

Getting coverage for new treatments

All insurance plans bar coverage for experimental treatments. Some do have a "compassionate care" exception, which comes into play when regular treatments have been tried unsuccessfully and the plan's medical advisors agree that the experimental treatment could be workable. This exception is generally available only to people with life-threatening illnesses.

So what do you do to pay for promising new treatments for PDDs, such as Secretin, IVIG, or auditory integration training? You either pay out of pocket or you work closely with your physician to get around the experimental treatment exclusion.

The HMOs won't cover any experimental tests. I switched this year to a dual medical plan where we can go out of the HMO. The insurance will pay 70 percent and we pay 30 percent. This allowed us to get tests done we knew might help find a cause (titers, allergies, yeast), and we found a flexible out-of-plan MD.

We are very frustrated with trying to find the right specialists and having to battle our son's primary care physician for a referral. --Joe, father of seven-year-old Kyle (diagnosed PDD-NOS with autistic features)

"Creative coding" is the term doctors use to describe billing the insurer or managed care entity for something that's not quite what was actually delivered. For example, an audiologist might be willing to bill for AIT, which the insurance company probably would not pay for, as something else that the insurer would pay for.

Creative coding is not exactly ethical, and it may not be desirable, either. Providers who do it take tremendous risks, and parents or patients for whom it is done must remember that they can't discuss these services with the rest of the healthcare team for fear of exposing the deception. That said, the practice seems to be increasingly common. It is not infrequently used to ensure treatment for people with PDDs by managed care companies or insurers that normally do not cover autistic spectrum disorders.

For immunological or GI-tract-related treatments, physicians may choose to bill their services as treatments for immune-system dysfunction, GI tract, or nutritional problems alone, with no mention of PDDs. Unlike creative coding, this probably will not get the physician in trouble if they have documented evidence of the conditions they are treating.

Your physician may have to prepare a "letter of medical necessity" to support your treatment request--or this task may fall to you. This letter must include:

  • The diagnosis for which the service or equipment is needed
  • The specific symptom or function that the service or equipment will treat or help
  • A full description of the service or equipment and how it will help the patient
  • If the service or equipment is new or experimental, supporting evidence (medical studies, journal articles, etc.)
  • If there are less expensive or traditionally used alternatives to the new or experimental service or equipment, well-supported reasons that these alternatives are not appropriate for this patient

Make smart insurance choices

If you have more than one insurance plan to choose from, your best bet is a plan that has an out-of-network clause. These plans allow you choose your own providers if you can't find the right professional within the plan. You will generally pay more for these out-of-plan visits, but you won't have to run the referral gauntlet as often. As PacifiCare's Dr. Betts noted, integrated HMOs that offer both medical and mental healthcare may offer similar advantages to their customers, although not all customers agree.
We had no insurance years ago, and I paid for some things out-of-pocket. Now I have him covered with Kaiser. It's a struggle to get them to care, to get to a specialist, to get them to take me seriously. I am trying to get chromosome studies and an MRI. It will be a challenge, I am sure. --Cindy, mother of fifteen-year-old Jeffrey (diagnosed verbal dyspraxia with "autistic-like" features)
If your employer does not offer insurance that covers speech therapy, mental healthcare, out-of-network providers, or other needed services, this is something that employees can take up with the human resources department (or, in small companies, the boss). When the cost is spread over a group, these additional benefits may not be very expensive.

Although many healthcare consumers think federal oversight might be the solution, so far federal law has done more harm than good. Many HMOs are protected from individual customers' lawsuits by federal law, although there are ways to get around this exemption.

Insurance for families or individuals affected by any long-term disability is very hard to get in the private market. It's available, but premium costs can be extraordinarily high. If you anticipate leaving a job that provides you with health insurance for one that does not, be sure to look into participating in a COBRA plan. (COBRA is the Consolidated Omnibus Budget Reconciliation Act of 1985.) COBRA plans allow you to continue your coverage after leaving employment. You will pay the full rate, including the contribution previously made by your employer, but it will still be less than what you'd pay as an individual customer.

Maintaining continuous coverage is critical to avoid being locked out of healthcare due to pre-existing conditions. If a COBRA plan is not available, other lower-cost possibilities include group plans offered by trade associations, unions, clubs, and other organizations. You may also want to look into public health insurance options, which are discussed later in this chapter.

Appendix A, Resources, lists several books and publications that can help you in your quest to secure insurance coverage and appropriate healthcare services for a person with a disability. For managed care issues, you may want to visit the Web site maintained by MCARE, the National Clearinghouse on Managed Care and Long-Term Supports and Services for People with Developmental Disabilities and Their Families ( The National Coalition of Mental Health Professionals and Consumers also maintains a useful site (

The Mental Health Parity Act and you

The federal Mental Health Parity Act was passed with much fanfare in 1996 and went into effect at the beginning of 1998. Many people now believe that all insurance plans in the US must cover mental healthcare at the same level as they do physical healthcare. This is a misconception. This law affects only employer-sponsored group insurance plans that wish to offer mental health coverage. They are not required to do so. Additionally, if such coverage raises the company's premium cost by more than 1 percent, they need not comply with the law. Companies with fewer than 50 employees are also exempted.

The Mental Health Parity Act raises the annual or lifetime cap on mental healthcare in the plans that it covers, but it does not prevent insurance companies from limiting access or recovering costs in other ways. They may, for example, legally restrict the number of visits you can make to a mental health provider, raise the co-payment required for such visits, or raise your deductible for mental healthcare.

In 1997, twelve states--Arkansas, Colorado, Connecticut, Indiana, Maine, Maryland, Minnesota, New Hampshire, North Carolina, Rhode Island, Texas, and Vermont--passed their own, more restrictive, mental health parity laws. As noted previously, these laws supersede the federal regulations. Eleven other states have parity laws that are equal to the federal act, and others have less-restrictive parity laws. Of the twelve with tighter restrictions, all of the laws are written in ways that should require coverage for PDDs. Colorado, Connecticut, Maine, New Hampshire, Rhode Island, and Texas specifically require coverage for autistic spectrum disorders and other "biologically based" mental illnesses. For parents and patients living in these states, this is a step in the right direction, although it remains to be seen how these laws will be enforced and what steps some insurers may take to evade responsibility.

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