Magazine article The Exceptional Parent , Vol. 37, No. 8
Information of interest to people with disabilities and other special needs and their families.
Imagine you have a nineteen-year-old daughter away at college about three hundred miles from your home. Her roommate calls to say there's something terribly wrong. She tells you that your daughter is speaking incoherently and behaving unusually, and you hear it for yourself when your daughter is put on the phone. Knowing that there's a serious medical problem, you suggest that the roommate call 9-1-1. You're worried and eager to get to the hospital, but a hurricane has made traveling impossible.
The next day, you and your spouse are finally able to venture out to check on your daughter, but although the weather is more accommodating, hospital policy is not. After introducing yourself to the clerk at the emergency room desk, you're asked for a Health Care Surrogate form authorizing you to have access to her medical information.
"But we're her parents," you reply. "She's a college student here, and we're the ones who suggested she be brought to the hospital."
You're told there are new regulations and patients' privacy must be protected. "Without that form, we can't even verify that she is a patient in this facility," the clerk says.
Can you imagine what you would do if this happened to you? It's a parent's nightmare ... but it's also a real life scenario experienced by the Singer family of Ft. Lauderdale, Florida.
Harlan Singer is a Special Care Planner' with the Eppy Financial Group, a part of DBS Financial Group, a general agency with the Massachusetts Mutual Life Insurance Company (MassMutual). He helps families with someone who has special needs create life care plans that prevent situations such as this one. He was well aware that the hospital had every right to treat his daughter, who had reached the age of majority, as an adult. He was also familiar with the Health Insurance Portability and Accountability Act (HIPAA), which had been enacted by the U.S. Congress in 1996 to, among other things; protect the medical privacy of individuals. But here he was, unable to be involved in his daughter's medical care. Perhaps his professional expertise simply didn't kick in because his family doesn't have special needs, or because it's easy for any parent to overlook the legal implications of a child becoming an adult, or because, like so many of us, he just hadn't yet gotten around to taking the necessary precautions. All of these reasons are perfectly understandable, but regardless, he and his wife faced a tremendously upsetting and apprehensive situation. And they aren't the only parents in recent years to do so.
Could HIPAA affect you and your family? Yes! Just as with any state or federal law, it most certainly can. You may have already worked with your financial professional, medical care provider, attorney, or even a Special Care Planner to take measures to have the legal right to make medical decisions for a family member with special needs. But do you have other children of adult age? What about your spouse? It's important to take the same precautions for all family members, but first, let's examine the law itself.
HIPAA was established to do three major things. First, it regulates group and individual health insurance plans, and it helps protect health insurance coverage for workers and their families, especially those who have preexisting conditions, when there is a job loss or change. Next, it establishes national standards for identifying medical providers, insurers, and employers, and requires that all patient information, including billing and claim information, be maintained electronically. Finally, it sets rules to increase the level of privacy--and security--of individuals' medical records.
Let's Talk Privacy
State laws can build upon (but cannot detract from) HIPAA's benefits, protection, and privacy, further complicating the ability of administrators to thoroughly understand the law. …