David A. Billmire
The birth of a child with a cleft or a craniofacial defect can be a traumatic event for a family. Feelings of shock, guilt, and inadequacy are common. Once these fears and concerns are addressed and the parents are assured that the problem is not their fault, the next question they invariably ask is how they will pay for the child's care. This is a legitimate concern, especially in view of the current situation regarding healthcare financing and coverage. With about 13% of children having no healthcare coverage at all, 26% covered mainly by Medicaid (Edmunds and Coye, 1998), and the remaining covered by some form of managed care, the treatment of any complex disorder brings anxiety to the family and treatment team. The concern for the family is whether they can afford the care, and the concern for the team is whether they will be allowed to do what can and should be done. Craniofacial disorders are somewhat unique from a medical perspective. They are rarely fatal, their functional aspects (i.e., speech, hearing, and dental) are easily dismissed by managed care, and they have a strong quality-of-life issue with significant aesthetic overlay. Furthermore, they must be treated over the developmental life of the child, which makes them susceptible to claims of pre-existing conditions, and, most importantly, they occur exclusively in children. Children and their parents lack the financial and political wherewithal to effect significant changes in healthcare (Strauss, 1994). Despite all of this, however, it is rare that a child in the United States with a craniofacial disorder does not receive at least basic care.
Healthcare Funding
Healthcare is funded through a number of different sources. There is traditional indemnity insurance based on the fee-for-service concept. There are a whole series of health maintenance organization (HMO)-based and propagated programs using various management concepts, discounted fees, contracted services, panels, etc. Finally, there are the government-based and -administered programs such as Medicare, Medicaid, State Children's Health Insurance Program, Civilian Health and Medical Program Uniformed Service (CHAMPUS), state-based special needs programs, and locally administered indigent care programs. Children are usually covered by, or are eligible for coverage under, one of the above programs.
Indemnity Insurance
Traditional indemnity insurance is becoming less common. It is based on a fee-for-service design, and while it may provide the greatest choice of practitioners, it usually does not cover routine care. Denial of care for lack of “medical necessity” is uncommonly an issue as management is left up to the physician and family. However, dental care, a critical factor in clefts, is not covered and speech coverage may be limited.
Health Maintenance Organizations
For most Americans, the majority of healthcare coverage is provided by some sort of managed care organization. The oldest type of this system of healthcare is the HMO. For a prepaid, fixed fee, the organization will provide comprehensive hospital and outpatient services. Kaiser Permante of California is the prototype of this form of healthcare. The federal government became involved in 1973, when Congress passed the Health Maintenance Organization Act of 1973. This law, as well as subsequent amendments and bills, established the ground rules under which HMOs operate. Currently, the majority of HMOs are federally qualified. By being federally qualified, these organizations may offer their products to Medicare clients. They must provide 10 basic benefits, such as physician services; hospitalization; preventive care; emergency services; diagnostic services; rehabilitation services; up to 2 months of physical, occupational, or speech therapy; drug and substance abuse treatment; and home healthcare. These are basic guidelines and the minimum that can be offered.
To provide services, HMOs can either directly employ providers or contract with independent providers. Patients then choose from among the providers or, in some cases, are assigned to specific offices, depending on location. There are four basic types of HMO model currently in existence. The staff model is one in which the HMO directly employs the providers. These providers offer services solely to members of the HMO. In the group model, the HMO contracts with a number of groups to provide healthcare services to its subscribers. Usually in this situation, the majority of patients treated by the groups are HMO members. In the network model, the HMO contracts widely with a number of groups and practitioners to provide services. The HMO members are only a fraction of the group and practitioners' business. In the independent practice association model, the HMO contracts with solo practitioners or associations of providers, which in turn contract with their members to provide the necessary services. Typically, an HMO will actually combine two or more of these models to create a system.
Usually, HMOs provide good basic care, but they may fall short in services to children with special needs (Ireys et al., 1996; Fox et al., 1993; Newacheck et al., 2000). By definition, they deal with a fixed practitioner base and obviously cannot provide comprehensive specialty care in every case. In cleft care, this can be a problem if there is no one in the plan who is experienced in the care of such patients. Providers may be reluctant to refer out of their plan due to the added cost. Cleft care has become the hallmark of team management (Bardach et al., 1984, 1992), but the HMOs, despite their stated commitment to quality and health maintenance, may be against referring to a team for management (Cohen, 1995). Comprehensive care of these disorders may be too expensive for the HMOs bottom line.
Preferred Provider Organizations
A preferred provider organization (PPO) offers a system of coverage by contracting to providers at a discount and then offering these services to employers. Enrollees are encouraged to use preferred providers because of lower co-payments and maximum limits on out-of-pocket costs for network services. Enrollees are allowed to see out-of-network providers but at a higher personal cost. Such organizations have become quite popular as they offer both lower premium costs as well as greater choice of providers. One of the notable differences between HMOs and PPOs is that enrollees may visit specialists without the need of authorization from their primary care physician. Like HMOs, PPOs have several different types. A provider-sponsored organization is established by the providers, employers, and other groups. Traditional indemnity companies often set up their own networks or may, in some cases, lease networks from other insurers (the providers themselves may be unaware of this situation). An exclusive provider organization is a system which in nonemergent care is limited to a fixed panel. It is essentially a form of a point-of-service system, allowing some out-of-network care. Specialty PPOs provide a limited range of benefits such as occupational/physical therapy, speech/language, dental, mental health, and pharmacy services.
Point of Service
Point-of-service systems combine the advantages of HMOs with out-of-network coverage. This is done with economic incentives using a fixed co-payment as opposed to a 20% to 30% co-insurance rate. Services obtained out of network are reimbursed at fee-for-service rates, but there is usually a per-person limit. Point-of-service plans are popular as they allow access to specialists for those who are willing to pay.
In addition to private HMOs, there are both Medicare and Medicaid HMOs. The effect of Medic-aid HMOs on children with special healthcare needs is questionable. Many of these children are covered under Title V programs with service coordination as part of their management (Fox et al., 1993).
Government Programs
State Children's Health Insurance Program and Medicaid
While it is true that millions of children are not covered by health insurance, a significant number are eligible for state and federal programs and would be covered if only the applications were filled out (Summer et al., 1997). Traditional pediatric coverage is usually available through the federal Medicaid program. This program was created in 1965 as Title XIX of the Social Security Act (Edmunds and Coye, 1998). It is a federally mandated program, whose original intent was to provide coverage to children similar to that which Medicare provided to the elderly. Medicaid was initially tied to participation in welfare; however, in the mid-1990s these restrictions were loosened. A phase-in program was initiated so that by the year 2002 all poor children under the age of 19 will be eligible for Medicaid. Unlike Medicare, however, the programs are partially state-managed and -funded. While the federally managed Medicare program has consistent rules and levels of reimbursement nationwide, state-funded Medicaid programs have highly variable coverage and reimbursement rates. The low level and variability of reimbursement can and do restrict the availability of care. The State Children's Health Insurance Program (SCHIP) was established in 1998 by federal law (Balanced Budget Act of 1997) (see Families USA, http://www.familiesusa.org) to help fill in the gaps in children's healthcare for those not eligible for Medicaid. Coverage is available to families with incomes up to twice the federal poverty level. The combination of Medicaid, SCHIP, and private health insurance should theoretically cover the medical needs of all children.
Title V Programs
As parents of a child with a craniofacial disorder know, treatment needs extend beyond classical medical boundaries, specifically in the areas of speech and dentistry. Although Medicaid does include some dental services, these are areas long neglected by traditional insurance. In 1935, along with establishing the Social Security Act, the U.S. Congress created Women and Children's Health Care, now better known as Title V (National Maternal and Child Health Clearing House http://www.nmche.org). These programs came under the Maternal and Child Health Bureau of the Department of Health and Human Services (http://www.mchb.hrsa.gov). These programs, currently refered to as Maternal and Child Health and Children with Special Health Needs programs, exist in every state and territory of the United States. The actual administration and scope of these programs vary from state to state. These are variously known as, e.g., crippled children's programs, special needs programs, or children with medical handicaps programs. They are designed to provide services to children with developmental, congenital, and acquired disorders and diseases. In general, these programs are a stopgap measure. They provide payment and often service coordination when no other source is available. They also provide standards of care, which are followed by the Medicaid programs. The programs are usually need-based, with a sliding scale of reimbursement. These programs help pay for critical dental care, such as restoration, splints, and orthodontics and prosthodontics (crown, bridge, dental prosthesis). With the recent increase in managed care coverage, they have also been forced into an active advocacy program regarding insurance coverage for children with birth defects. Their budgets are becoming strained by the denial and restriction of services created by managed care. What was once thought of as a stopgap measure is now becoming the primary source of services. Recent expansions and changes in both Medicaid and SCHIP have called into question the existence and function of this critical resource.
Alternative Sources
If the above programs fail, there are still individual state-financed and private sources of care. The Shriners Hospitals for Children (http://www.shrinershg.org/hospitals/) may offer care. The Choices program (Children Healthcare Options Improved through Collaborative Efforts and Services) links these private endeavors with existing state and federal assistance programs.
The Contractual Basis of Insurance and Medical Necessity
In any type of private insurance, whether it be traditional indemnity, HMO, or governmental, it is critical for the parent and provider to realize that insurance is contract-based. There are obligations on both the parents' (subscribers') and the insurance companies' parts. These are spelled out in the contract. While it may seem logical that a service be covered, unless it is spelled out in the contract, it is likely to be denied. This also entertains the whole concept of medical necessity (Ireys et al., 1999). Currently, medical necessity is the determination of whether a specific service will be provided for a specific situation. The legal authority lies with the managed care organization or the insurance company. Typically, the insurance companies' interpretation of medical necessity is often different from that of the physician and patient. Many current definitions of medical necessity, i.e., a service that will significantly improve health, may work to the detriment of children with special health care needs, who need the services simply to maintain function. In the case of children with craniofacial disorders, medical necessity may be used to deny care based on the definition of improving health. After all, one is only improving appearance, not health. Determination of medical necessity is not easy and must be individualized, taking into account the patient, the disorder, and the family situation. While rationing (a deliberate decision to protect resources for the group as a whole at the expense of an individual) is conceptually different from medical necessity, in reality, expense can and will factor into the medical necessity decision-making process. Having explored this issue, it is important to again emphasize that medical plans and insurance are contract-based. If the contract excludes coverage for certain services, e.g., dental, scar revision, or jaw surgery, the determination of medical necessity for these services is not an issue for the provider. In other words, the insurance provider will not argue the medical necessity of the service but simply state that it is not a covered service by contract and, therefore, will not be provided. In situations where services are covered and medical necessity is approved, the insurance company may still stipulate restrictions as to length or extent of care.
In the case of a child with special health care needs, it behooves the parents to look closely at the potential health plan and ask the following questions:
· Will the plan allow my child to go to a center and be team-managed?
· Will it allow my child to seek second opinions?
· What providers are in the plan?
· What ancillary services, i.e., speech, does it provide?
· What are the restrictions and exclusions?
· What defines a pre-existing condition?
Since most plans are presented as group plans, it is difficult, if not impossible, to negotiate any of these points. More latitude may be allowed in employer-sponsored or self-insured types of coverage. In larger companies, one can often discuss these points with the benefits manager. Some HMO plans provide service managers for complex cases. If this situation is available, it is advantageous for the parents to see if this type of service coordination can be applied. This can significantly reduce the paperwork and provide uninterrupted care for the child.
Ancillary Services
A child with special health care needs often requires extensive use of services beyond those strictly medical. In many ways, these services are as essential, if not more so, to the child's well-being than those provided by medical professionals. These are the services that allow the child to function in life. As they are not often thought of as medical in nature but their need stems from a medical condition, they are usually covered by medical insurance. In craniofacial disorders, both dental and speech services fall under this umbrella.
Speech
The state and federal governments have passed laws mandating that schools provide services for special-needs children. Of significance to cleft children is that speech therapy is included in this mandate. While theoretically this was a good idea, in reality it has become a treatment nightmare. By mandating school coverage for speech therapy, the government has allowed the insurance companies to abrogate their responsibility for this critical service. A number of problems have ensued. First and foremost, school does not usually start until age 5. During the early critical period of speech development, children are left in a treatment limbo. They often do not get necessary diagnostic and treatment services when indicated. Second, school speech programs are geared toward relatively simple cases, such as articulation disorders. They are usually understaffed, meet infrequently, often group-based rather than individual, and in no way adequate for the complex speech problems associated with clefting and craniofacial disorders.
Insurance companies have, as a result, geared their programs for adults. Speech therapy is often available only to treat loss of an acquired skill, such as loss of speech following a stroke or accident. In children, speech is not yet acquired, so it cannot be lost. Therefore, coverage of speech diagnostic and therapeutic services is often denied (remember that contract). Most HMOs are federally qualified, and one requirement is that they provide a minimum of 60 therapy treatments. Most insurance companies have taken this is as their maximum, not minimum. If one reviews most policies, one will see that the number of 60 sessions of speech or occupational/physical therapy is the maximum. This limitation is problematic not only for acquired disorders but also for the complex issues associated with inherited craniofacial conditions. As most speech problems in these children fall under some form of developmental diagnosis code, they are often automatically denied. Speech and language therapists are forced to become creative in order to come up with codes that will allow them to provide necessary services. Currently, there are a number of state and nationwide initiatives to overcome this glaring shortcoming.
Dental
Dental care, a critical component in the care of these children, has traditionally been almost totally ignored by insurance. In the last few years, there has been a proliferation of both dental insurance and dental HMOs. As with medical insurance, these contracts must be closely evaluated to see exactly what is covered and what the restrictions are. Historically, medical insurance coverage occasionally provided for some of the perioperative services required for bone grafting and orthognathic surgery, such as splints and planning, but this is no longer the case. While Medicaid does provide for basic dental care, the complex issues associated with craniofacial disorders are usually not covered. The Title V programs have become an important funding source for these services. These services, although covered by the special needs programs, are reimbursed at levels significantly below the market rate, and it is often difficult to find practitioners who can afford or are willing to provide the often complex treatment needed. The average wage earner, with or without dental insurance, will usually have to personally bear the cost of the child's special dental care needs.
Secondary Surgery
While basic care can be provided by the programs described above, secondary care is increasingly being denied. The American Society of Plastic Surgeons (http://www.plasticsurgery.org) in a recent poll of its members discovered that 53.5% of the surgeons surveyed have had at least one pediatric patient partially or totally denied coverage for craniofacial or congenital defects. Even when coverage is available, it is getting harder to obtain approval. One of the most common ploys is that of the pre-existing condition. Combine this with the almost revolving-door change in insurance coverage, and one can see that a child with a birth defect is at great risk for disruption or frank denial of care. The American Medical Association (AMA House of Delegates Policy H-475.992) officially defines cosmetic surgery as “being performed to reshape normal structures of the body in order to improve the patient's appearance and self-esteem” reconstructive surgery as “being performed on abnormal structures of the body, caused by congenital defects, developmental abnormalities, trauma, infection, tumors or disease.” It is clear that congenital defects and their correction fall under the definition of reconstructive surgery. Despite this, insurance companies continue to deny coverage for any surgery beyond initial repair as “cosmetic.” There are even reports of denying repair of isolated clefts of the lip as “cosmetic.” When dealing with the insurance company, it is important to never refer to any planned surgery on the child as cosmetic. Once they hear this, it can be impossible to dissuade them from changing their stand. The correct term is congenital deformity, and any treatment or surgery that improves the situation is reconstructive. Nevertheless, it should be emphasized that insurance is a contract. Often, the company has its own definitions of conditions and terms outlined in the contract, which may not be the commonly accepted and assumed definitions. They can and will define anything in the contract that they choose as cosmetic or a noncovered disorder.
The most common denied procedures are scar revision, nasal surgery, bone grafting and closure of the alveolar cleft, and orthognathic surgery. Virtually all clefts will require at least one scar revision. Surgery unfortunately does not always come out uniformly. Revisions to both the lip and nose are common. A typical reason for denial is either cosmetic or pre-existing condition, or both. The parents and their surgeon will often have to send documentation, letters, pictures, etc., to get coverage. At times, it will appear to be, or actually will be, a delaying tactic on the part of the insurance company. This may be a standard ploy, and parents should not hesitate to appeal all adverse decisions by the carrier. They should know their rights and read the contract. It is important to emphasize the congenital nature of the child's condition in dealing with the carrier. Bone grafting of the alveolar cleft is often denied as it is thought to be a dental procedure. This can usually be overcome with some education of the medical director of the plan and because of the fact that almost all alveolar clefts are associated with a fistula (a covered medical problem). Orthognathic surgery (surgery to reposition the jaws) was at one time almost universally covered for everyone, congenital defect or not. Insurance plans have drastically limited or eliminated this procedure altogether. Even in circumstances with severe malocclusion secondary to either a congenital condition or trauma, this procedure is denied as cosmetic. Sometimes it can be approved if the condition results in airway obstruction and surgery will improve breathing. This is an instance where patients might be better off with one of the government programs than private insurance. There are standards of cleft care published by the American Cleft Palate-Craniofacial Association (1993), which include the necessary orthognathic surgery. Most Title V special needs programs follow these guidelines. The HMOs, which purport to provide comprehensive care, usually do not follow the guidelines.
Legislation
The increasing denial of secondary, advanced, and in some cases primary treatment of craniofacial disorders has, as one would expect, led to some attempt at correction by legislative means. Nationally and in individual states there are bills being submitted and passed which will mandate coverage of reconstructive surgical procedures for children with congenital, developmental deformities, diseases, or injuries. As of this writing, 13 states have passed such bills and there is a bill in Congress which addresses the issue. One of the problems is that the bill mandates surgery only and does not cover ancillary services for needs such as speech, hearing, dental, or psychological therapies. While superficially this may seem to be a good idea, simply mandating the requirement does not guarantee that reimbursement
will be adequate or that anyone will be willing to do the procedure. Coverage of breast reconstruction recently became mandated, but reimbursement levels are now so low that many surgeons either are unwilling to do the procedures or provide only the most basic, simple reconstructions.
The medical insurance business in the United States has undergone rapid and profound changes over the last decade and, unfortunately, shows no sign of stabilizing. Many of the problems that allegedly brought about these changes are still present. The treatment of craniofacial problems by an integrated team method is often pointed to proudly as the first attempt by organized medicine to approach a group of disorders in a “managed” manner. Standards of care have been established, treatment plans created, and critical pathways outlined. Furthermore, this has been done in a national, organized, consensus-based forum with multiple disciplines involved. This is exactly what managed care has asked of us, to justify the treatment of any disease. Yet when presented with these facts and reports, their approach is somewhat disingenuous, hiding behind contractual jargon and denying care. Parents need to carefully review their contracts, voice their concerns to their employers, and become advocates for their children. Insurance companies often are unaware of, ignore, or bend the rules. Parents and providers need to know their rights. Appealing decisions has become almost standard operating procedure. Flagrant violations of coverage can and should be reported to the state insurance commission. The Title V programs (http://www.mchdata.gov) have become increasingly active in this area as they often bear the financial brunt of these denials. In summary, one has to know one's rights, be an advocate, and be persistent.
References
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