For parents of children with special needs, one scenario that often arises has to do with “HIPAA” regulations. HIPAA, which stands for Health Insurance Portability and Accountability Act of 1996, is the primary federal regulation governing a patient’s private medical information. HIPAA gives a patient the right to manage his or her medical information and regulates who can access that information. Because medical providers must follow HIPAA regulations, it is difficult for caregivers who legitimately need to access another person’s medical records, often in an emergency, to do so without a health care proxy or durable power of attorney that authorizes the release of the information. Under HIPAA, doctors in these situations can disclose medical information to patients’ families, but they are not required to do so without a release from the patient. Parents of children with special needs often bump into these restrictions for the first time when their child reaches 18 and obtains his or her own right to privacy under HIPAA. If the child is not under guardianship, either because he or she does not require it or because no one has obtained it, it may be hard for a parent to obtain information from a doctor or hospital without some form of HIPAA release from their child. In these cases, it is important for the child to execute a valid health care proxy, if they are able to do so. The health care proxy will not only allow access to medical records, but will also provide that the child’s wishes are carried out if he or she ever requires serious medical care.
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