Who dreamed up a law that prevents parents from access to medical information about their over 18 year-old kids—unless these famously still-adolescent offspring have signed a HIPAA waiver? I’m betting that in most cases even neurotypical kids want and need their parents’ help in dealing with doctors. Especially when filling out endless forms, asking for a detailed family history, medication dosage and frequency, and, yes at the very bottom of the paper mountain, that pesky HIPAA form. Since most young adult kids are covered by their parents’ insurance (up to age 26, thanks to Obama), many parents are still making and paying for medical appointments. It seems like an obvious disservice to everyone to keep caring and paying parents in the dark. If kids are emancipated minors who pay their own bills, that’s another story. Those young adults have proven themselves to be highly independent, capable of managing their own lives, and they have earned the right to privacy.However, it seems that none of our brilliant lawmakers thought much about the plight of young adults with disabilities or their parents. I’m quite certain if one these brainiacs had a young adult child on the autistic spectrum, (or with ADHD, bipolar or borderline diagnosis or some other mental disorder), he or she would NEVER have written the HIPAA laws in their current form. Surely the lawmakers and parents of kids with disabilities would be aware of the scientific evidence demonstrating the prefrontal cortex—the part of the brain associated with good judgment—does not complete growth until age 25 in neurotypical adults and even older for adolescents with issues. This is a HUGE population!!
Thanks to the current HIPAA law, yesterday at the doctor’s office I was unable to pick up my daughter Sarah’s medical forms. These comprise the very last piece of a package that needs to be submitted to the Office for Persons with Developmental Disabilities (OPWDD) in order to secure enough support and funding to allow my daughter’s dream of being independent to come true. At the doctor’s office, a nurse explained the glitch: While Sarah had signed her name on the HIPAA form, she failed to put my name on it. (See “Mommy Vortex,” 6/14/13, where I described the limits to Sarah’s independence and her difficulty filling out detailed medical forms). The office receptionist told me the HIPAA form needed to be redone correctly. I should bring a blank form home to my daughter, have her sign it, add my name and return it to the doctor’s office the next day. (!!!) So the disenfranchised Mom gets to do errands for her daughter, placate an uncaring medical secretary, and redo a medical form that could have been filled out correctly the first time if we’d been given proper instruction or if anyone had bothered to look at it while we were there. Adding insult to injury, Mom has to pay the doctor bills BUT receive NO information. By the way, at the time of Sarah’s appointment, I tried to be thorough by asking the medical secretary if my daughter had properly signed the HIPAA form. At the time, she said yes. What she neglected to add was that Sarah had failed to put my name (or anyone else’s) on the form, thus rendering it meaningless. Who else has played Catch 22 with their doctors? And if I can’t get a straight and complete answer from the medical secretary, what hope does my daughter have of navigating the system alone?
When Sarah was 19, the HIPAA laws created a big problem for her. During freshman year of college in Vermont, (at a school where all the students have disabilities) Sarah was sexually assaulted by another student. Our daughter almost didn’t tell us, and she had a limited understanding of how badly she had been violated. When we reported the incident to the administration, the college offered to take her to the hospital, but she didn’t want to go. Sarah preferred to continue on with her life, go to dinner and a party as if nothing had happened. Even after we convinced to her allow college personnel to take her to the hospital, the hospital had asked her if she wanted various tests for pregnancy and STDs. Our daughter said “no” because the law allowed her to do so. The problem was that Sarah didn’t understand WHY she needed the medical tests or why they were important. No one had explained things to my already vulnerable daughter in a way she could comprehend. No intelligent person says “yes” to a medical procedure they don’t understand. As soon as I explained things to Sarah, she was willing to return to the hospital and undergo the appropriate testing. Why didn’t the special needs college or supposedly educated hospital personnel try to communicate with our daughter in a way that a young adult on the spectrum would understand? I can only guess they didn’t consider it part of their job description.
Of course the flaws and follies in the 1996 law known as HIPAA go way beyond my own family. Consider the horrifying killings in Isla Vista, CA on May 14th by Elliot Rodger, a mentally ill young man of 22. Did his parents know everything they needed to prevent that tragedy, or did the privacy law prohibit doctors and psychiatrists from sharing “protected” patient information? Perhaps some thought should have given to protecting this patient’s potential victims. Continuously rejected by women, Rodger had targeted attractive female college students and sexually active men in his revenge shooting rampage. Many serious mental illnesses, like schizophrenia, begin at the end of high school at exactly the age when HIPAA prevents doctors from sharing a patient’s information with his or her parents.Speaking of schizophrenia, it’s pretty crazy how lawmakers go out of their way to protect the privacy of all 18 year olds, yet are perfectly willing to send them to war. According to our laws, young adults are mature enough to kill and die for their country, but not old enough to drink alcohol. In fact, if they are unlucky enough to be caught drinking alcohol or with a phony ID, they can be kicked out of college and end up in jail. Meanwhile, sororities and fraternities have continued to thrive on college campuses with parties and binge drinking rampant among the many under-age students. Imagine how precipitous the decline in college applications would be at schools where the administration assiduously and consistently worked to eliminate all drugs and alcohol on campus. Sure, a handful of kids are arrested and expelled, fraternities and sororities shut down, in order to satisfy the letter of the law and protect against SOME (but not all) drunk drivers.
Who else hasn’t been protected by HIPAA? It’s not just young adults (or their victims) who suffer from poorly written, short-sighted laws, it’s also the elderly. As medicine improves and more of us live longer, there will be an even bigger pool of aging and frail adults. Many of the elderly will develop Alzheimer’s or suffer from elder abuse, either too cognitively impaired or too afraid of their families to report symptoms. Under current laws, the doctors who are supposed to care for and protect the elderly do not have the legal authority to report suspected abuse or neglect unless it’s extreme. If some octogenarians are more like eight-year olds, don’t they deserve the same protections as children?Of course most parents understand that young adults want to be able to confide in a therapist, seek contraception or even an abortion without a parent being notified. In those cases, confidentiality should be respected. Otherwise, the thinking goes, there would be more unwanted pregnancies and suicides because kids would be afraid of their parents reactions to seek medical care. But what about all of the other situations and populations I’ve mentioned (to say nothing of those I haven’t thought of)?
Simple misundersanding of the rules also contributes to the problem. "There's a tremendous amount of misinformation among the general public and the medical community about HIPAA," says Carolyn Wolf, head of the mental health practice at Abrams Fenster, a New York law firm. Doctors often don't understand that there are situations where they would be allowed to reveal information.
It’s not my job to correct HIPAA’s flaws and follies. But, as a taxpayer, I have the right to point them out.