Recently NPR told the story of Mark, an ordained minister from California. Mark's son Scott is 24, has schizoaffective disorder and has been hospitalized a dozen times for the hallucinations, mania and depression that it brings.
During his high school years Scott began experiencing changes in behavior and mood. Like most parents, Mark and his wife chalked it up to teenage angst. Shortly before graduation Scott became exceedingly more aggressive, throwing furniture at family members. At this point Scott was taken to a psychiatric hospital by the police.
Scott was 18, but because he was still in high school, he was treated as a minor by the hospital. Mark and his wife met with Scott's doctors and set up a treatment plan. This is how it should be. Yet the minute Scott left high school his parents could no longer be a part of the treatment team. They could not speak with the clinicians that were treating their son unless Scott signed a release allowing them to do so.
It is true. There is a new privacy law called the Health Insurance Portability and Accountability Act , which was created in part to protect patients' information. But the law, called HIPAA for short, also presents a dilemma for families of people with serious mental illnesses like schizophrenia. HIPAA restricts what family members can find out directly, leaving them to wonder how they can help a loved one who won't share treatment details.
The reason this is a cautionary tale is that if you are a parent/caretaker of a disabled adult I strongly recommend you become this person's legal guardian. You can be a full guardian, a partial guardian, or a financial guardian. The process of becoming a legal guardian is the easiest if done before the age of 18.