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Disabilities and Privacy Rights
In 1996, as part of our civil rights, Congress passed a law to protect the personal health information of all individuals. This includes all forms of stored information in any healthcare setting that collects data from us.
The federal law is called the Health Insurance Portability and Accountability Act or HIPAA.
Why is this important? It means that we have the right to share our personal and medical history with a healthcare professional without it being disclosed to any other entity unless we have granted them the permission to do so. Not only written records, but also conversations are private and cannot be shared.
Healthcare providers can only discuss your information on a need-to-know basis with other caregivers. Computers must be safeguarded with security systems. Files and records are safely stored with access only allowed to providers needing information and then, only information pertinent to their care role. All staff is trained to comply with the law.
No personal information including name, address, phone number, or email address can be shared. Neither can your medical diagnosis, your medications, or anything else that has been documented in the healthcare system.
There are some exceptions. Life insurance companies, employers, many schools, and law enforcement agencies are not required to comply. That does not mean that they can release your personal information to the public, but it does mean that they can share it more freely for their purposes.
Where public well-being is concerned, there are diseases that must be reported to public health agencies. In these instances, statistical data is gathered to conduct research concerning the prevalence of contagious disease to help us learn about and reduce those incidents.
Sometimes this protection can be disadvantageous. You are not allowed to have any information about any adult family members, even if you are responsible for them, unless they have given permission ahead of time. You can request information about your children under the age of 18. Once your child reaches 18, their healthcare information is protected under the law. Spouses cannot be given information about each other without written authorization.
But overall, it is reassuring to know that the benefits of this law supercede any impediments to the distribution of personal information. There are simply things that people do not need to know.
Physical and intellectual disabilities cannot be easily hidden. But nobody has the right to know what we do not want or need them to know about us. The importance of privacy cannot be minimized in that it gives us the option of determining how much information we choose to share with others.
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