Your son or daughter is a child with special needs. As a parent of a special needs or exceptional child you are faced with continuous day to day issues regarding your child’s health of which the workaday world has little awareness. Every day, in a thousand towns across America, Johnny or Janie falls off his or her bike. There is the usual skinned knee, quickly healed with a Band-Aid and the magic words, “If you fall off your bike and break your leg, don’t come running to me!”

But what if Johnny or Janie has a condition known as Osteogenesis Imperfecta, the so-called “brittle bone disease”? Its severity is as varied as the people who have it. In the worst case, bones break before the baby is born, causing disfigurement from birth or even death. In the least severe cases, years may go by without a broken bone.

Inevitably, a bone breaks. Or, if Johnny or Janie has Muscular Dystrophy, therapies are indicated. Or perhaps orthopedic or corrective surgery may need to be done. In any event, and inevitably, a health issue raises its sudden head.

Care is given, surgeries are performed, therapies are begun. And then, inexplicably, come the letters from your HMO, or PPO, or Private or Group Insurance Plan. Payment is denied. Necessary medications are not covered. Courses of therapy are deemed “elective” by people in offices thousands of miles from your home, people who have no idea of the hardship and upset they are causing. It’s an impersonal decision, a decision they make a dozen times a day on a dozen case files. Certainly, if they knew the facts, if they knew your child, the reviewers wouldn’t make these decisions.


Your first inclination (and a good idea) is to call your health insurance provider. Sometimes a phone call is all it takes to obtain approval for a medication or a common procedure. Sometimes a series of calls and letters can resolve a coverage issue to your satisfaction. But what if you’ve called and written, and submitted invoices and doctors’ treatment notes, and still you are getting nowhere? What if the speech therapist is on the verge of discontinuing your son or daughter? What if the calls are coming in from Medical Billing?


The calls from Medical Billing are, at the least, upsetting. The discontinuance of therapy services can be disastrous to your child’s long term wellbeing. The impulse to take legal action under those circumstances can be compelling. Yet, the decision of whether to hire a lawyer shouldn’t be based on distress or fear for your child (unless the circumstances are clearly life threatening). Rather, you, as a parent, should calmly consider whether the hoped-for outcome is worth the very definite if not very measurable cost. Legal action takes both time and money. Generally, the lawyer’s time and your money.

Before calling your attorney (or letting your fingers do the walking), consider the situation. What are your out-of-pocket expenses? If they are minimal or manageable you may wish to pay for the noncovered services rather than engage in a long, expensive battle with a health insurance provider.

The answer to that question depends on several others. Firstly, what are your economic resources? If you happen to be a Junior Vice-President of a Hollywood studio you probably have more economic flexibility than if you have a job as manager of the local supermarket. What can you afford?

Secondly, is this a situation likely to repeat itself? If you are facing a one-time limited course of treatment, noncoverage by your provider may not be a serious problem to you. But what if Johnny or Janie needs this medication refill monthly? Can you afford not to be covered?

In the event that the answers to these questions are in the negative, you will have to find a lawyer. Generally, lawyers who work with insurance tend to do insurance defense work, representing the company against people in your situation. Still, in today’s litigious world, you won’t have much trouble finding a lawyer. Finding the right lawyer, one with a familiarity with special needs issues, can be much more difficult. A number of lawyers have human services backgrounds and may be more inclined to take on such “social issues” cases.

A word of caution may be in order here: Since the passage of the Americans with Disabilities Act in 1992, many attorneys have added “Disability Law” to their practices as a matter of form. While most of these lawyers have the best of intentions, they may not have the special needs experience necessary to handle your matter. Don’t be afraid to ask questions to determine if a lawyer has the necessary background. Wedded to special needs knowledge, an attorney’s letterhead may carry surprising weight with an insurance company.

A few words about fees. In all likelihood you will not find a lawyer willing to take this type of case on a contingency (that is, “You pay if you win”) basis, largely because there is no contingency here. You are attempting to have your health coverage provider pay for an arguably noncovered/covered service. In the end, you will have triumphed if your bill gets paid. Rarely will the provider agree to pay attorney fees in a settlement, and the awarding of attorney fees in a litigation is dependent, first upon winning, and second, upon the judge (or more rarely, jury) who, depending on the circumstances, may or may not impose that responsibility on the defendant company. Since some 99% of all cases get settled before reaching the courtroom, the odds are the health insurance company will not be paying your attorney fees.

More likely than not, you will have to pay attorney fees out of your own pocket. While some attorneys may handle such cases on a pro bono or no-fee basis, asking a lawyer to take a case pro bono is somewhat like asking the proverbial question about a lady’s age. It can create severe strain in your relationship with your attorney, and both of you may feel pressured and dissatisfied with the ultimate fee arrangement.

An attorney with less experience in special needs will have to research your child’s disability and any relevant cases long and hard in order to effectively represent you. This adds to the expense of handling your matter. An attorney knowledgeable in special needs is knowledgeable undoubtedly due to long experience in the field. Having handled many such cases, yours will not appear unique to the attorney, whose practice is made up of many families, each one having a child with special needs.

While many (and perhaps most) special needs attorneys are extremely moderate in their billing practices, the avalanche of clients needing their expertise is quite often overwhelming beyond their resources, and they must bill their clients or be forced to close their doors.

It is in your best interest to remain flexible. There is not an attorney who doesn’t shudder inwardly when a client approaches him or her with a matter based upon “the principle of the thing.”

Principles are a fine thing. We should all have them. We should all attempt to live by them. Having said that, any lawyer knows that “principles” make notoriously poor ammunition on the legal battlefield. Sticking to “principles” may thwart attempts at settlement, will almost certainly cost the client more money, and may cost her the case if a judge or jury feels that she is not willing to compromise or is being unduly difficult. If a courtroom recovery is Iess than a settlement offer, the plaintiff may receive nothing. In short, a bad settlement is better than a good lawsuit. You may not get everything you want. But half a loaf really is better than nothing.


The uniqueness of your answers to all these questions is a reflection of the uniqueness of your special needs family. As you can see, the answers depend upon household economics and what your family can afford to pay against the cost of what must be done.

Expenses of medical care, adaptive equipment, and other necessary services can easily outstrip even the bank account of an affluent family. For good or for ill, we find ourselves relying on governmental benefits like Medicaid – a leaky raft in today’s rough economic seas – and on private insurance carriers. And private insurance companies are not providing the reassurance they once did.

Your Health Maintenance Organization is, more and more frequently, reducing available benefit packages and refusing payment on clearly legitimate claims. It is becoming more and more difficult to file an insurance claim and have it “routinely” approved, especially where the claims may be for extraordinary medical conditions or expenses.

Fortunately, the battle can be won. An important thing to remember is that in spite of their size, their economic resources and their potential access to a range of specialists, most insurance companies, in the persons of their claim examiners, know next to nothing about disabilities. You and your children are better experts about the details of a your special needs child than any insurance company representative can ever be.

It is frustrating to wonder why your insurer fails to see or to account for the seemingly obvious. Few of us have the time or energy, ability or resources to dedicate ourselves to “educating” an insurance company. And even fewer companies would welcome the education were it to come.

Still, educating the company is part of the lawyer’s (and your) role. A well-written presentation of information about your child’s specific disability, such as studies and research available through colleges and universities and articles appearing in the general press can go far toward making a company reverse an unfavorable decision. Also document your child’s daily needs, activities, and limitations with reports prepared by your child’s physician and other treating professionals. A well-drafted presentation of the facts is an essential first step in overturning a negative decision. It is a good bet that neither the insurance company nor the nonspecialist attorney has ever heard of rarer syndromes such as Cornelia DeLange or Jumping Frenchmen of Maine, and the provider may know very little about even well-known conditions such as Multiple Sclerosis, Muscular Dystrophy or Down Syndrome.

Generally, it is a lack of information that causes problems in the first place. Your health insurance agent may assume (wrongfully or rightfully) that the company covers or is even aware of the specifics of your child’s disability. Language in insurance policies may be unclear and open to varying interpretations. Claims examiners, with no certification in special needs, may not know whether certain disabilities are covered simply because there is no company-wide policy on the coverage of disabilities, well known or not. For you, the purchaser of the policy, there may be no way of finding out the company’s procedures in regard to special needs issues until a problem occurs.

You may never be denied coverage to your good fortune. It depends on the prejudices of individual claims examiners. Often, it is a matter of choosing the right words. A health insurer may refuse to cover therapies for “developmental disabilities” such as Cerebral Palsy under the impression that these constitute a kind of preexisting condition; yet the company might not balk at covering treatment for “neurological conditions”. The downside of this situation is that there’s no way to tell for certain what the right words are, unless you’ve picked the wrong ones.


Luckily, the old adage of “caveat emptor”, or “Let the Buyer Beware” is not your only protection. Most states, and the federal government, have regulations in place to protect policyholders. An important federal law in this area is ERISA, the Employee Retirement Income Security Act.

Under ERISA, insurance companies are obligated to disclose with specificity any conditions that can affect eligibility or receipt of benefits. Under ERISA, companies must clearly identify circumstances that result in ineligibility, or in denial of any benefits that you as the insured individual would otherwise reasonably expect to be covered.

ERISA’s disclosure requirements are more often honored in the breach than in the reality. Companies frequently summarize their coverage with a very broad brush and with language that is almost intentionally vague (the more vague the better for varying the interpretation case by case).

You often don’t know, and won’t know, even in writing, whether specific conditions are covered, or whether your provider relies on variables as diagnosis or treatment in determining whether to pay a benefit. Failure to disclose such information in a summary of coverage might be seen by the court as misrepresentation, and the guilty company may have to pay damages under ERISA.

Another powerful piece of legislation favoring you the consumer is the Kennedy-Kesselbaum Act, which forbids a health insurer from denying coverage for preexisting conditions under group policies.

Besides ERISA and Kennedy-Kesselbaum, which are federal laws effective in all fifty states, many individual states have parallel legislation such as Deceptive Trade Practices Acts. Deceptive Trade Practices Acts allow you to bring suit against your provider when they fail to provide anticipated services because the company has committed an omission or untruth, a misleading comment, false advertising, misconduct, or an unfair trade or competitive practice. A company which sells a policy specifically providing coverage for general special needs situations can be liable for a breach of good faith and fair dealing when the company fails to pay out on what, for that customer, is a routine claim.

Do health insurers beat ERISA, Kennedy-Kesselbaum, and the various state laws? They try. Policies are often festooned with fuzzy language making the effective date of policy provisions difficult to decipher. A policy may have “blackout provisions” stating that a condition will not be considered “preexisting” if treatment was not received for it within a specified number of months prior to the effective date of the policy. The insurer may then claim that a routine regularly scheduled office visit or a consultation where no service was provided constitutes “treatment.” Likewise, the insurer may attempt to categorize any or all services for your disabled family member as “treatment” affecting these blackout provisions. The provider may be very creative in this regard, lumping a visit to the dentist for a filling together with a visit to the cardiologist for a pacemaker.

Or, most insidiously, the company may agree to pay, and then simply do nothing. It’s unprofessional, it’s punishable by regulatory agencies, and, for a time, it works. There is little so aggravating as having a promise to pay for services, where no payment is being made. Repeated attempts to receive payment may be met with delaying tactics. A particularly obstreperous health insurance company can drag payment out for months simply by repetitiously “not receiving,” “losing,” or not returning documents such as invoices, treatment records, or settlement agreements. This drives up costs to you, and drives you (and your attorney) up the wall. In such a case, a referral to the Insurance Commissioner for that state or territory may be your only option.

While your health insurance agent is helping you fill out an application, it is in your best interest to discuss, frankly and openly, the fact that you have a special needs member of the family. This information, shared with the agent, puts the company on “constructive notice” of your situation, making it less likely that company representatives might at some future point claim to know nothing about the needs of your family. If the company does eventually plead ignorance, constructive notice may be of great help in resolving the matter in your favor.

Also, it is not widely known that disabled Medicare recipients, regardless of their age, are eligible for the same supplemental health care packages ordinarily marketed to recipients over sixty-five years old. These health care supplements can be available for little or no cost to the beneficiary, cutting health care expenses immensely.


Health insurance coverage can be a sticky wicket. Special needs knowledge is all too often restricted to only those people whose lives are directly affected by a special needs situation. Ignorance however, does not and generally should not imply callous disregard. Insurance companies, and other corporations providing products to the general public, have become acutely aware of the potential of the special needs population in this country, especially since the passage of the Americans with Disabilities Act.

These companies are always busily seeking out new and innovative ways to provide services to the special needs population. It is, after all, a population of some fifty million Americans. In response to this need, The National Special Needs Network promotes corporate and industry-wide education through Certification of individuals as Qualified Special Needs Professionals.

It is clear that given the current worrisome condition of most state and federal benefits programs intelligent alternatives to these programs must be found. Nowhere is this more important than in the insurance industry, providing as it does a bulwark against fear for millions of Americans. It is in everyone’s best interest not to take anything for granted and to remember that, in the final analysis, the exception proves the rule.

© 1997 Jeffrey H. Minde, Esq.

(* That this is subtitled “An Address to Parents” should not be taken to mean that I do not recognize that Special Needs individuals do not achieve independence and adulthood. The issues addressed herein are equally applicable to the insured adult concerned with his or her own health care coverage dilemmas, as I well know from first hand experience.)