Protecting the right to homeschool has been Home School Legal Defense Association's focus for 21 years. Because that right is squarely balanced on the two principles of parents' rights and religious liberty, HSLDA is keenly concerned whenever our members' parental rights are challenged.
Over the last decade, we have watched rising costs, increased medical liability, new technology, high-profile child abuse cases, complex regulations, and bioterrorism blur the roles of the state, medical professionals, and parents in children's lives. Now calls like the one in the cartoon at right are commonplace in our office.
Loving, responsible parents trying to make wise health decisions for their children are looking for information to help them navigate the changing landscape of the medical field. In response to this need, HSLDA President Mike Smith asked two homeschooling dads who work with medical issues and parental rights to share some practical insights.
Dr. Rodger Sayre, an HSLDA board member since 1997, is a family physician, and his wife Mary is a registered nurse. They live in Tunkhannock, Pennsylvania, and teach their 11 children at home.
HSLDA Litigation Attorney James R. Mason, III, routinely handles serious challenges to our members' parental rights. He and his wife Debbie homeschool their seven children in Stephenson, Virginia.
Mike Smith: In HSLDA's experience with our 80,000 members, we have found that a visit to the doctor can sometimes turn into a polarized battle between the doctor and parents over the health needs of a child instead of a team effort. We'd like to explore some of the reasons this happens, identify some "hot button" issues, and offer some suggestions for how parents can be prepared and work with their doctor.
A general principle to keep in mind is that your doctor is there to help you (think friend, not foe). However, since the advent of health maintenance organizations (HMOs), many members do not have a personal doctor with whom they can build a trusting relationship. Therefore it's important to know the law and to become informed on medical services your family may require. If you are an HSLDA member and concerned about your parental rights in a particular medical situation, please contact our legal staff.
Dr. Sayre, what advice would you give homeschooling families to help them avoid problems with their doctor and develop a good relationship with him?
Dr. Sayre: It is a great joy to care for patients who have a friendly and open attitude, and with whom there exists a sense of mutual trust and respect. In fact, it is for this type of patient that I regularly and willingly sacrifice sleep to care for their needs.
At the other end of the spectrum, however, are patients with a chip-on-the-shoulder attitude. Perhaps they were disappointed by a previous relationship with a physician, or maybe they have bought into the oft held belief that physicians are merely interested in making money and care little about them personally. Sometimes there is even a distinct impression that the patient is gunning for you, as though they have memorized the attorney's phone number as advertised on TV before the noon news. It is difficult for physicians to miss this type of attitude, and equally difficult for us to remain compassionate when an adversarial air pervades the room.
Here is the key for eliminating most of the problems you may have with the medical community: Search for a physician with whom there is "good chemistry," and lock into a trusting and long-term relationship. We recommend scheduling an appointment (yes, be willing to pay for this opportunity) to meet with your prospective physician and ask questions. Get a feel for where he is coming from on such issues as immunizations, homeschooling, etc. Often the bottom line is where he stands on the issue of parental rights. Is he willing to allow you as the parent to make the final decisions regarding the health care needs of your children? If you are new to an area, it may be helpful to ask those who are in your local homeschool support group or church for recommendations for potential health care providers.
Mike Smith: Those are great suggestions, Dr. Sayre. HSLDA Litigation Attorney Jim Mason recently dealt with a case of serious misunderstandings between doctors and parents. Jim, can you help us understand some of the legal issues underlying many of these situations?
Jim Mason: One important thing to remember is that doctors see horrible cases of child abuse. If they don't know your family well, they may err on the side of seeing abuse or neglect where it doesn't exist.
Medical professionals are mandatory reporters of child abuse and neglect in every state. This means that state law requires them to report suspected child abuse, and there are often penalties for failing to do this.
The best way to avoid trouble is to have a doctor you are comfortable with, who understands your views on child rearing and agrees with them. A good personal relationship with your pediatrician is essential.
Mike Smith: An HSLDA member family recently ran into difficulty because they chose not to follow a doctor's advice. Jim, tell us about this case.
Jim Mason: One recent emergency call involved Family A*, who had taken their jaundiced newborn home from the hospital against the medical advice of the on-duty doctor, apparently prompting the doctor to call social services. (The family felt that mom and baby were not recovering well in the hospital and simply wanted to go home.) By the time the social worker was involved, Family A had already contacted their own pediatrician, who confirmed that the baby was at no risk. This headed off a potential social services investigation.
Mike Smith: Dr. Sayre, what if a parent feels he has a truly legitimate reason to go against a doctor's advice?
Dr. Sayre: First, it is important for a person to be absolutely certain that he is making the right decision when going against the advice of a physician. As a general rule, years of training and experience make the physician more qualified than the patient in making decisions regarding his health care. There are certain circumstances, however, where the patient may know something about the case in question that the physician does not know. If the parent or patient is sure that the physician is incorrect in the assessment of a symptom complex or a treatment plan, a calculated and respectful disagreement is in order.
In the case Jim just described, Family A had a pediatrician that they trusted, and for one reason or another had good cause to believe that he would back them up in their decision to sign out of the hospital against medical advice. I cannot overemphasize the importance of having a good relationship with your physician: a congenial and trusting relationship is the single most important element in ensuring freedom from undue scrutiny and in procuring optimal health care. Hence Family A appealed to an alternative physician, and the issue was settled to their satisfaction.
However, if the family had not had a physician to back up their decision, they could have painted themselves into a corner. Physicians are in fact obligated by law to report any actual or suspected cases of abuse or neglect. A newborn with a significantly elevated bilirubin that is going untreated by parental choice may very well qualify as neglect. (As an aside, jaundice is the yellowing of the skin caused by increased bilirubin. A bilirubin elevated above a certain threshold in a newborn can cause permanent brain damage.)
Finally, there may be times when taking the line of least resistance is the most prudent option. One may choose to accept the advice of the physician on a non-life- threatening issue, and after the fact, quietly seek subsequent healthcare elsewhere. This will prevent being unnecessarily reported to social services with its attendant long-term consequences.
Mike Smith: Occasionally an HSLDA member family will report that medical staff have pressured them about accepting specific treatment—being condescending and rude, for example, to families who choose not to immunize. How should parents respond to this?
Jim Mason: So many of these tense encounters HSLDA hears about happen in the emergency room. In that kind of setting, everyone is feeling under pressure. Parents are understandably worried about immediate medical threats to their child's health, perhaps life. Doctors are understandably concerned about alleviating the threats many patients are facing simultaneously, at the same time keeping in mind insurance liability issues and government reporting mandates.
It's vital to know why you have made certain medical choices and that you become familiar with the law in your state. For example, 48 states authorize religious exemptions for parents from immunizing their children (West Virginia and Mississippi are the exceptions). Several states allow for conscientious parental objections to immunizations. Most doctors will respect a parent's choice if the parent has made an informed decision. Again, it is also important that you have a solid relationship with a family doctor or pediatrician who can back you up if other health care providers—like emergency room doctors—attempt to press the issue.**
Dr. and Mrs. Sayre: At times it is difficult to separate being respectful and responsive to the recommendations of an expert from being intimidated. As we seek to wisely care for our children, it's important to remember that exercising that wisdom includes listening to the advice from those with greater knowledge of a subject. If that advice does not seem to square with your own intuition or knowledge of the issue, it is prudent to seek a second opinion from a trusted physician. Although there may be some resistance initially to this request, this appeal to an alternative authority is widely accepted in the medical profession. Making sure that you don't attack the individual, just the issue, will aid in your ability to leave the office with the relationship intact. In addition to obtaining a fresh opinion, it will allow time for you to pray, gather your thoughts, and perhaps obtain legal help.
Mike Smith: Another incident happened to one of our staff members and raised the issue of privacy—how far can a doctor go in probing for information?
Jim Mason: Here's what happened: This staff member's wife took their three daughters, ages 8, 11, and 12, in for a routine checkup with their family pediatrician. Because the youngest daughter expressed reluctance to go for her exam alone, the mother sat in the exam room with all three girls as each took her turn. In addition to doing the physical exams, the doctor asked a series of questions, which in HSLDA's experience are becoming more and more commonplace.
The doctor started with "household health risk" questions such as "Do you keep guns in the house?" and progressed to more personal questions, touching on issues the mom felt were inappropriate for the girls' ages and levels of maturity.
Even though the pediatrician used vague, mature terms to approach these issues, the mother grew increasingly uncomfortable with the doctor's line of questioning. The family had not yet discussed some of these sensitive, controversial topics—such as birth control—and she was especially concerned that the 8-year-old might infer details for which she wasn't prepared. Another issue the doctor brought up was teen suicide, which alarmed the 11-year-old enough to keep a concerned watch on her older sister for weeks afterwards.
Finally, the pediatrician offered to be available if the eldest daughter needed to talk in private in the future about such matters. The mother said that the family wouldn't need that (referring to both birth control services and further discussion on the issue). The doctor, however, replied that most kids need "that kind of thing whether we like it or not."
The mother and (upon hearing this story) the father were surprised and disappointed. They felt that their pediatrician was undermining their authority and pushing an agenda. It was obvious that they needed to look for a new doctor, one who shared their values and would show respect for their authority and opinions.
Mike Smith: Dr. Sayre, because of HSLDA's experience with mandatory reporters who too readily suspect child abuse, you can understand why we tend to advise our members against allowing their children to be privately interrogated when the atmosphere seems hostile. What are some criteria that doctors use to determine whether to see a child alone?
Dr. Sayre: There are occasions when I will ask a parent if I can discuss an issue with a youngster in private, especially if I have reason to suspect that the child may not be truthful because of the presence of the parent in the room. (Keep in mind that, like the patients of most physicians, the majority of the children in my practice are not homeschooled, and many are from difficult social circumstances.) For example, a child may exhibit signs of depression or anxiety and refuse to discuss the source of his struggle with his adult caregiver. In this situation, it may be advantageous to meet privately with the child to afford him the opportunity to discuss his social situation candidly. In another more specific example, a teenage girl may present signs or symptoms of bulimia (an eating disorder characterized by forced vomiting after eating). If this young lady were to be confronted in the presence of her mother, she might off-handedly deny this activity, fearing her parents' reaction. But by pulling the mother aside to discuss suspicions and to obtain her permission to question the child, the doctor may be able to approach the issue privately and in a non-judgmental manner. If suspicions are confirmed, the physician can then help both the youngster and her mother deal with this problem.
As a parent, it is important not to become defensive, but to ask the doctor or nurse in a private setting (out of earshot of the child) if they have a specific concern. Their response will determine your next step. In general, you should be careful about allowing health care providers to question your young children (e.g., under 10 years old) in private. As any parent can attest, kids have great imaginations and they will often follow the lead of an adult without understanding the significance of their words. Older children may be more discerning in their responses, and depending on a) the reason for the questioning, b) your relationship with the examiner, and c) the child in question, it may be acceptable (or even desirable) for your child to be examined in private.
Mike Smith: That's understandable, but our members have experienced quite a few situations where a medical professional seems intent on going on a fishing expedition for evidence of child abuse. How can parents prepare a child in case a doctor or nurse asks to speak with him in private?
Dr. Sayre: Teaching a child to be honest should be one of our great efforts in the training process. A child should be prepared to answer any question honestly, and if there is a question that makes them feel uncomfortable answering, they should simply defer to their parents. Recognizing that few social service workers and health care professionals are in agreement with the practice of corporal punishment, it may be prudent to ask children to defer these questions as well.
Mike Smith: That's good advice, Dr. Sayre. Another issue that has caused some problems for some of our members is the intrusive questionnaires HMOs use asking about guns in the house, drinking, and sexual habits of teenagers. What do these questions have to do with health care coverage?
Dr. Sayre: Health maintenance organizations (HMOs) offer a contractual arrangement whereby the patient pays a set amount for health care over the course of the year, and the participating health care provider is obligated to accept as payment in full a prearranged fee regardless of the time, effort, or resources needed to provide for a person's health care needs. Under such circumstances the provider should theoretically be very interested in maintaining "wellness" in his or her HMO patients, calculating that such an effort would ultimately result in a cost savings over time. Asking questions regarding habits or activities that are known to be associated with health problems—such as smoking, drinking, or risky sexual behavior—enables the provider and the HMO to be selective in who they accept as patients and/or to encourage change in their behavior. If the questionnaire meddles unnecessarily in other areas of a person's social life not directly related to health care, it would be appropriate to simply refuse to answer these questions, understanding of course that this may jeopardize one's chances of being accepted by the insurance policy.
On a personal note, we were contacted by our HMO regarding the immunization of our children. Upon questioning, we found that our HMO keeps records and ranks their physicians according to patient compliance in areas of "wellness" care. We felt that this inquiry demonstrated a potential breach
of the principle of "doctor-patient confidentiality" and shared our concerns with the individual representing our HMO. We weren't adversarial, but just politely shared that we would discuss any concerns and questions regarding our children's health with our primary care provider.
Jim Mason: This has definitely been a hot issue at HSLDA. Our legal staff has received a number of inquiries from families who feel intimidated by these kinds of questions from HMOs. We remind our members that answering such questions is a matter of parental discretion. Each family must evaluate their own comfort level with the information being requested and mentally prepare before going to the doctor's office and filling out forms. Decide ahead of time what you will do or say if you are asked questions that make you feel uncomfortable.
Not all the questions on a questionnaire are necessarily mandatory—just because you begin filling out a form doesn't mean you must answer every item on the form. It can be a little more difficult when a live person is taking the information. But you can turn the questions around and ask the HMO representative or medical provider: "Why are you asking these particular questions? Do I have to answer them?" If the interviewer continues a line of questioning which makes you uncomfortable, be prepared with a reasonable response for declining to answer those questions, such as "There is so little personal privacy left these days that our family feels we should not give out personal information unless there's a really good reason." If the questioner becomes more aggressive at this point, you may need to say, "I'd really like to run these questions past my attorney before answering them."
The bottom line is that this is a personal decision your family must make.
Mike Smith: Dr. and Mrs. Sayre, how do parents become informed consumers of medical services? Are there any resources on general health you would recommend to parents?
Dr. Sayre: I frequent the American Academy of Family Physicians (AAFP) website (www.aafp.org) when I am searching for information not readily available elsewhere. Unlike the American Academy of Pediatrics and the American Medical Association, the AAFP has by-and-large avoided the temptation of getting involved with the liberal political agenda. Many other sources are available, but I must reiterate a caveat here: Don't believe everything you read, as there is much information touted as truth with minimal or non-existent supporting research. In dealing with health issues, one must be ever mindful of the power of prejudice and the motivation of money. I have a bottle on my dresser labeled "Dr. Pierce's Favorite Prescription for the Relief of the Many Weaknesses and Complaints Peculiar to Females." In small print at the bottom of the label is the statement, "Guaranteed by World's Dispensary Medical Association, under the Food and Drug Act, June 30th, 1906." What in the world is the World's Dispensary Medical Association? On the other side of my dresser is a bottle labeled "Dr. Kilmer's Swamp Root Kidney, Liver, and Bladder Cure" (subtitle, "Worth more than its weight in gold"). At the bottom of this bottle is the statement, "Sold by all Druggists"—well, I guess that makes it the clear choice for all your organ ailments! Unquestionably, Drs. Pierce and Kilmer made a few bucks peddling their potions, sanctioned by an official sounding organization and with such universal acceptance. Be a wary consumer.
Mike Smith: What about controversial issues such as immunizations?
Dr. Sayre: There is a host of medical information readily available on the Internet and in lay literature. Please be reminded, however, that not everything in writing is credible. If you or one of your loved ones suffers from some physical malady, read up on it and ask questions of your physician. He or she should be able to set you straight if your information is erroneous. If your physician is intimidated or irritated by your questioning, it may be a tip-off to a problem with your doctor-patient relationship.
As the number of recommended immunizations continues to increase, many parents have concerns about the necessity of all of these for their children. The Center for Disease Control website (www.cdc.gov) is quite extensive and will give the mainstream approach to many health issues. It deals extensively with the hot button issue of immunizations, as well as many other public health concerns. If an individual is looking for the flipside on the topic of immunizations, the National Vaccine Information Center website (www.909shot.com) will provide plenty of thought provoking listings and links. Another alternative approach to immunizations is presented by Stephanie Cave, M.D., in her book What Your Doctor May Not Tell You about Children's Vaccinations.
Mike Smith: A number of our members are homeschooling children with special needs. Dr. and Mrs. Sayre, are there any special health care considerations these parents need to think about or be aware of?
Dr. Sayre: With a special needs child, because of the increased scrutiny that comes as a consequence of these needs, it is critical that health care be up to date and good records of health care available. Periodic evaluation by an "expert" in the realm of the disability is helpful in diffusing any concern regarding non-mainstream involvement. For example, I referred a 3-year-old child with a speech delay as well as various other developmental abnormalities to a "pediatric developmentalist." As part of her treatment plan, the developmentalist recommended ongoing involvement by a speech and language pathologist. The family called the local provider of such services and found them to be unsympathetic with homeschooling in general, and unwilling to involve the parents in the therapy process. The parents then called HSLDA for advice on where to turn, ultimately finding a speech and language pathologist who was willing to work with them. Arrangements were made for an evaluation, which continued on an annual basis until the child was 9. These evaluations are now part of their permanent medical and academic file for this child. (While it was originally thought to be unlikely that he would ever speak, this child is now 10 and is able to carry on a conversation with great enthusiasm.)
In addition to this practical issue of record keeping, there are some important specific health concerns related to specific disorders. As an example, thyroid dysfunction, obesity, structural heart anomalies, and a spinal deformity known as atlantoaxial instability are all associated with Down syndrome. I would encourage enlisting the help of your
homeschool-friendly physician in screening for and dealing with any health care considerations unique to a special needs child.
Jim Mason: Parents also need to be aware that state law, government intervention levels, and other requirements may vary from state to state. They should become familiar with the legal requirements affecting special needs children in their state.
Mike Smith: Dr. and Mrs. Sayre, are there any other health issues you would like to address?
Dr. and Mrs. Sayre: There is one other issue we would like to raise. We believe it is helpful for people to see your family out and about in the community, and to get to know you as individuals outside your normal realm of functioning. People will be less suspicious of your educational choice and child rearing practices if you are involved in community functions, with opportunities to relate to people on a social plane. There are a variety of ways this can be accomplished, but a few examples may include involvement in community sports activities, musical or dramatic productions, community service projects, etc. With intimate parental involvement in these activities there will come opportunities to meet other adults in the community, potential to impact the unsaved, and a plethora of situations where our faith can be put into action. Some of our richest times of learning at home have occurred during the debriefing sessions that have followed these outside activities.
Mike Smith: Dr. and Mrs. Sayre, what is one overriding principle you'd like to leave with readers?
Dr. and Mrs. Sayre: A principle that is especially applicable in this situation is outlined in Proverbs 15:1: "A gentle answer turns away wrath, but a harsh word stirs up anger" (NIV)..Many times, the tone of our response sets the course for the outcome.
About the Sayres
Dr. Rodger Sayre received his medical degree from Thomas Jefferson University in Philadelphia, and maintains board certification in Family Practice. A Geisinger Medical Group associate with a busy practice in Nicholson, Pennsylvania, Dr. Sayre is a member of the Christian Medical Association, the American Academy of Family Physicians, and the American College of Sports Medicine. Mary Sayre is an RN with experience in obstetrical nursing, and plenty of on-the-job training in pediatrics! Rodger and Mary started homeschooling in 1984 with the birth of the first of their 11 children.
|The Sayre family with their favorite physician (Dad!), nurse (Mom!), and dog "kitty."|
* Name changed to protect family's privacy.
**For additional articles on immunization, see HSLDA's Issues Library at http://www.hslda.org/docs/nche/issues/I/Immunization.asp