DISABILITY AND THE FAMILY

No one ever plans on having a disability. When an individual is severely affected by injury, accident or illness it has an enormous effect on not only their own life, but on those closest to them—which almost invariably involves the family.

Before an individual who has recently acquired a disability can get back to living, learning and achieving their dreams, there are always immediate practical issues that must be dealt with. In all but the most critical of cases, the decisions to be made come primarily from the afflicted person themselves. However, when that disability concerns a child the situation is often drastically different. The deferred responsibilities and need for decision making can create enormous pressures and dilemmas for the parents wanting to do the best they can for their child during a very emotional period of time. While most of the pertinent laws regarding a patient’s rights vary from state to state and health insurance policies can come in almost an infinite number of varieties—there is a common ground which every parent facing such a situation should know about. In an age of "managed care" and a rapid proliferation of laws regarding family leave, social benefits and employment, it is important for parents to understand their options.

As with any situation regarding legal statutes, the best advice is to see a lawyer first. Attorney, advocate and author of Legal Rights of The Catastrophically Ill and Injured, Joseph L. Romano, believes thatthe "family can benefit by consulting an attorney. Aside from answering legal questions and doing the necessary legal work, the attorney may be able to provide options and offer suggestions (such as how to obtain help paying medical expenses) that the family was not aware of. Families should obtain prompt advice concerning guardianship, benefits, and special education. Relying upon insurance companies, the courts, and state and federal agencies to ‘do the right thing’ often results in frustration and delay." Romano notes that if you do not seek legal advice it would be wise to "contact an advocacy group, [or] a non-profit foundation" which can assist someone in need of accurate and timely advice.

The one step every parent should have already taken is to have read all of their health insurance policy—even the fine print. Know your deductible, maximum benefits and any coverage exclusions. It is important to address any coverage deficiencies before you find that you need them. Realizing your insurance will not cover a major health problem can be nerve racking and well...just plain unhealthy. If you are going to pay large premiums for your family’s security, it’s good to know what that security encompasses.

HMOs and managed care have changed the face of health care. If you have insurance it is likely that you are either in an HMO now or that you will be soon. In this system, as the CEO has become the most important actor in the health field, the patient has suffered. The profits of "corporate medicine" are dependent upon giving the patient the least care at the most cost-efficient price. If it is cheaper for you to die than to receive a new experimental and costly treatment, you can bet that you will have to fight a greater battle against the HMO corporate office—rather than the afflicting disease—to survive. Legislation is catching up with the HMO’s "medicine for big profit schemes," but it may take time. The best advice to follow when dealing with an HMO is to make them aware that you and your attorney will be assisting in the treatment and care of your child and that you will make every effort to hold the HMO responsible for its primary contractual obligation—the health of your son or daughter.

The National Council on Disability’s 1996 conference brief reports that "people with disabilities often experience underservice in managed care plans. For people with disabilities and chronic illnesses, incentives built into managed care often run counter to effective rehabilitation, prevention of secondary disabilities and independent living." This is often the case because in an HMO environment, the doctor is an extension of the insurance company. His or her job depends more on his monetary contractual obligation to the HMO than the Hippocratic oath. To guarantee the best care for your child, require your child’s physician to live up to his or her legal obligation to the procedures of informed consent. Romano explains that before decisions are made about treatment or rehabilitation for your child the physician needs to discuss with you:

1) The diagnosis.
2) The nature and purpose of treatment or rehabilitation.
3) The desired outcome.
4) The hazards or risk of medica- tions, treatments or proposed health care.
5) The prognosis and degree of success.
6) Alternative procedures which could receive the desired result.
7) Any possible consequences of treatment.

If you feel that the doctor is not being up front with you, it is generally recognized—and the law in several states—that a parent should have access to the official medical records and doctor’s notes on the care of your child. If you have any reservations about the quality of care your child is receiving, do not hesitate to take these records or your child to another doctor for an alternative opinion. While this may not be covered by an HMO, the minimal costs of an outside consultation can often be invaluable.

If you don’t have insurance or find yourself dropped from the health insurance your family relied on, you will likely turn to the government and Medicaid for help. Medicaid, much like commercial health care, is in a period of turmoil and change itself. With the federal government giving up responsibility for these programs to state governments, eligibility and benefits are difficult to decipher in any general way. The best way to find out about your eligibility for Medicaid is to contact your local social services office. If you have trouble receiving benefits or feel you are being treated unfairly, contact your congressman about your concerns. He or she may be able to help.

Securing and financing the best care and rehabilitation for your son or daughter is only part of the initial reaction to a childhood disability. There are often psychological costs as well. Tom Sullivan, the author of Special Parent, Special Child, explains that initially parents are without fail skeptical about their doctor and their child’s treatment. "The parents of children with disabilities certainly react strongly when discussing the total treatment and the bedside manners of their doctors." These concerns often gravitate toward a period of denial. Sullivan notes that his mother didn’t accept the fact that he was blind for four months after the initial diagnosis. It seems natural for a parent to believe that this couldn’t possibly be happening to their son or daughter or if it is, that it won’t persist for long. Denial is a natural part of the human coping mechanism and once this stage passes, people often enter the next stage—grieving.

Sullivan notes, "Along with denial comes the grieving or mourning period. Parents talk about not having the perfect child. In the face of this loss, parents feel desperate to compensate. They do that by going on what I call the ‘parent search.’ They read everything they can find on the disability. They also tend to pursue every scheme possible in order to find quick solutions for their child." More often than not there is no quick-fix for the situation and the parents begin to realize that this is who their child is. At this point they often turn inward and ask themselves if they are part to blame for the child’s disability. As this occurs Sullivan notes, "Many marriages get stretched to the breaking point and, frankly, statistics show that many don’t survive. Relations with extended family members can become distant because parents are so absorbed, they believe no extended family member could ever understand their problems. In many cases, siblings suffer grave consequences because parents are forced into an all-consuming involvement with the Special-Needs child." If you or your family suffer from these tensions it is in your best interest to seek counseling to get through this period of adjustment. It is always in the best interest of the child that his or her family remain intact, supportive and sane.

After a period of denial and grieving the parents begin to accept the situation openly. However this stage is problematical as well because the realization that one has a child with such special needs can lead to the loss of one’s own identity. Sullivan says he receives hundreds of letters from parents who refer to themselves as "the parent of..." instead of by their names. "They see themselves as the parent of a child with a disability, rather than a whole human being. In these letters, I never seem to learn anything else about the parent." This loss of identity can put strains on one’s work and on one’s mental bearing which in the end may do more harm than good for the child.

While this process seems to be wrought with stress, social retreat and mental deterioration, these are natural responses to the potential harm of a loved one. Without the stress and determination of these stages it would be unlikely that parents would have the resolve to fight for the best treatment and rehabilitation for their children. More importantly the doom and gloom of these initial weeks and months often turns to the same joy any parent feels toward a growing and developing child.

Sullivan notes that after these initial coping stages, parents invariably "talk about the life lessons they have learned from their children. They believe they are better people because of the circumstances they have confronted, and they talk about reservoirs of strength they did not know they possessed." Parents eventually learn that a child with a disability has all the same potential abilities that any other child has and often develop extremely close and rewarding relationships based on these initial experiences.

Caring for any child with a disability requires medical and legal decisions that can be nerve-racking. The lesson of this story is to seek help if you are finding the situation overwhelming. In the back of every issue of ABILITY Magazine is a section of "yellow pages" which list contact information for any number of useful resources. Oftentimes the help of a special clergyman, advocate, lawyer, congressman or doctor can make all the difference, but remember: without your active and informed involvement, your child will be at the mercy of a health-care system which in many respects may no longer have health as its top priority. While this often requires an enormous amount of time, responsibility and stress, the reward, as any parent knows, is always so great.

ABILITY MAGAZINE...... subscribe