Family and Caregiver Schizophrenia Discussion Forum

Eliminating Barriers to the Treatment of Mental Illness - Federal Govt. requesting information from the Public

Passing on information I received in case you are interested in participating.

Dear Friend,

The federal government is requesting information from the public regarding potential changes to the federal privacy rules outlined in the Health Insurance Portability and Accountability Act of 1996 (HIPAA).

As you know, providers and facilities are sometimes reluctant to share critical health information with loved ones of people with mental illness for fear of violating HIPAA. The fact that the federal government is seeking a greater understanding of the problem and potential solutions from the public represents a huge opportunity.

You can help! Together, we can ensure the government understands the problems families face from burdensome HIPAA restrictions. We urge you to submit a comment online that explains how HIPAA has impacted your ability to help your loved one. Comment must be received by midnight on February 11, 2019.

Submitting a comment is not as complicated as it may seem. In fact, it is a straightforward way to directly engage policymakers. And a well-supported comment can carry more weight than a thousand form letters.

The official request for information can be found here. The document covers multiple HIPAA issues, however, the key section is just one page long: seesection b. “Promoting Parental and Caregiver Involvement and Addressing the Opioid Crisis and Serious Mental Illness.” Specifically, see Question 23.

Comments may be short or long, and may be uploaded either as a Word document or as a pdf. One can also cut and paste them directly onto the site. Regardless, it is worth taking the time to compose your thoughts before starting the submission process.

Again, please focus on the provision asking for information on HIPAA and serious mental illness, and do not feel shy about expressing your passion.Once you’re ready, just go here to submit.

Thank you!


Frankie Berger

Director of Advocacy

The links don’t work : /

I just copied and pasted the note from my email.

Here is a link to their website -

Below I pieced the “phrase” in BLUE and then the link.

“here” -

“section b” -

“see question 23” -

“here” -

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I submitted my comment. Thanks!


Your welcome. Pass the information on to any other groups you might know. I sent the information to my local and state NAMI organization.

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I submitted my comments-- thanks!!


Oh, my, this is very needed: a chance to change the HIPPA laws to allow caregivers more access to information and to more easily give information on their loved one’s treatment or need for it! Wow, that would be sooooooo much better…

Thank you for your post. I like the links. It is hard for me to navigate and understand “professional speak” of doctors, politicians and lawyers. The links you made helped me a lot.

I will craft an answer and post it through your last link before the deadline. I plan to simply outline how hard it is as a primary caregiver to help someone with SMI stay on medicines proven effective in a hospital, (where meds can be forced), yet be powerless to do anything effective once the person with SMI is released with a diagnosis because no one will talk to me. And how protecting privacy of someone who is in a psychotic state hinders the very actions a caregiver should do that would help keep them and others safe.


I hope most people here will post a reply. Something simple like: the HIPPA laws have prevented me on several occasions from helping my MI relative, which isn’t good since I am providing his/her care, living place, etc.

“here” -

It would be amazing for this law to be amended to help those caregiving for severe mental illness.

It should be done today! There is a quickly approaching time cut off.

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Submitted my comment. It’s not too late to help millions of families in the United States get help for their loved one.

Netflix’s movie “God Knows Where I am” was our story for a while…but we had a different ending. Our daughter is alive, medicated, working, dating…,and taking her first vacation. HIPAA was our enemy (if not equal or bigger) than the illness.

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