FAQ About HIPAA - Answered by Caregivers

Elizabeth V.: HIPAA is an act of our government that is designed to protect the privacy of each individual’s medical information from being shared with others unless permission is given. There are exceptions, but I am not aware of all of them. (example: If a court orders that specific records be released to specific people or organization(s); if there are multiple personnel in the same organization caring for my son.)

Insha H.: To me, HIPAA has not been a challenge in treating and supporting my son as his caregiver. It could be due to cultural norms within the family, where we have great trust and love, or it could be because my son knows that he is financially dependent on me and his parents.

Nicole G.: HIPAA means an excuse that doctors give so as to not engage with caregivers. HIPAA by no means actually helps someone who has schizophrenia and is in psychosis. It only leaves caregivers more vulnerable and less prepared for what lies ahead. HIPAA is like handcuffs.

Adam F.: HIPAA is all about one’s privacy and dictates what a professional can share or not share regarding one’s medical status.

Adam F.: Our son is a higher-functioning schizophrenic and has always involved us nearly 100% with his healthcare. Additionally, we have made it mandatory if he wants our support.

Jilla D.: I feel that perhaps I don’t really notice the ‘protective barriers’ of HIPAA since I am the conservator for my loved one (my father). However, the privacy of my father is something I do consider when interacting with businesses or entities outside of the medical field. I often sign releases of information (ROIs) for my father related to mental healthcare organizations.

Elizabeth V.: I have been given access to my son’s info typically only when he has signed a release. Usually, the release is time-bound. For example, it only applies during a hospitalization, not after discharge; it may only apply for a limited period of one year. However, I have been in a few situations where an MD or nurse has released information to me explaining that when a person has a mental illness, it is often (usually most of the time) necessary to have caregivers involved in the person’s care and that care is not adequate or efficient without the use of a team that includes the caregiver. Those personnel have always told me that they understand that they are violating HIPAA.)

Insha H.: Yes, my son has given consent; also since he has anosognosia, his doctor also understands the usefulness of involving me when his medication is tweaked, or if my son says something to the doctor that requires me to help do something

Adam F.: Our son has signed off on numerous situations where a DR was hesitant to talk with us without our son’s okay. Additionally, I have participated in many joint calls with both my son and me, including those with his doctors or Psychotherapist.

Elizabeth V.: Yes, I am familiar with the forms used to permit me to receive information about my son's healthcare. They are designed to protect my son from his information being released without his knowledge or permission. It also protects his information from being abused (ex: shared with others)

Elizabeth V.: Absolutely, definitely, and yes! During my son’s most recent hospitalization (I had him committed for an evaluation), I only found out which hospital he had been taken to because a nurse told me by accident. When he arrived at the hospital, a social worker called me to request information about him, saying that I had been listed as his emergency contact but that he had not signed a release form to release any information to me. She was very receptive to all the information I shared with her, but she would tell me nothing about him or his care. Additionally, while he was hospitalized, I was unable to cancel a dentist appointment because they could not confirm the date for me. Again, while he was hospitalized, his Primary Nurse Practitioner could not discuss his care with the hospital and was not aware of his new prescriptions when he was released. The hospital was not allowed to receive information from previous programs or doctors because he would not sign releases.

Elizabeth V.: That’s a very tough question. I have definitely shared info about my son when I believe it will assist in his care. I also share info about him when sharing may assist in my care. (Ex: support group meetings, MD appts, therapy appts., very close friends, not acquaintances, etc.)

Insha H.: It’s been a process. I was not willing to share my son’s diagnosis for a few years after he was diagnosed. That is also because of my son’s “normal” behavior. I did not invite questions from family or friends either or use the term “depression” as more acceptable socially to explain why he took much longer to complete his undergrad. At this point, we have shared his illness with family and friends, but after I went through therapy, I understood that I was perpetuating the stigma for myself and my son.

Adam F.: Yes, my wife and I are transparent in involving our son and being part of the communication, or getting his okay when sharing more sensitive information.

Jilla D.: With family and friends who already have known my father for a long time, it is easy to share and know what to be open about. With newer friends, I do grapple a bit with what to share with them. With his PCP and mental healthcare providers, I am very open with all of his health information because it benefits him and his long-term health/treatments. However, with other medical providers, such as urologists, dentists, and eye doctors, I try to limit the information to what they need to know and refrain from sharing mental health-related information. Where I find it a little invasive is when places ask for all of his current medications, which is revealing information.

Elizabeth V.: Definitely. I don't wish for myself or other family members to be treated differently due to what I say unless it will help my son somehow. I also don’t want folks talking about him and being indiscreet about his info.

Insha H.: Not any longer. Depending on who I’m talking to, especially when it's someone I’m getting to know, such as a new neighbor, I say my son has special needs and doesn't work or that he lives with us and leave it at that. The same is true with colleagues at work, except for those with whom I am comfortable. I will say he has a mental illness.

Nicole G.: Oh gosh, yes. And it’s because of stigma and discrimination, ignorance, and societal projections. And because I don’t want the world to judge my beautiful daughter. And then there are things like: How do you say it? How do you introduce the words so people can absorb them? How do I say it so that I protect my daughter’s privacy?

Jilla D.: When I was a teenager and in my twenties, I concealed my father’s story and never told anyone about his schizophrenia diagnosis. I didn’t feel that I could or wanted to tell anyone – I compartmentalized it. I was self-conscious about it and did not know anyone else with a similar situation (I still really don’t know anyone personally with my same situation - having a parent with schizophrenia). I didn’t have the tools at the time to be comfortable talking about it, understanding it, or letting people know about it. Schizophrenia is such a stigmatized disease, and even though we say to think of it just like any other bodily disease-- like cancer, or diabetes. You STILL have to be careful who you tell about it because intense discrimination is always a possibility, always a risk. I have to assess and get to know someone a bit before I am sure/confident about what I can reveal to them – I don’t feel like that has been difficult to do.

Elizabeth V.: His records are in a locked file cabinet. I am very careful about talking about him if I believe I can be overheard (e.g., during FaceTime meetings with his sister, Zoom support group meetings for me, etc.). I am also careful about discussing anything relating to his illness when others are present.

Nicole G.: It mostly sits in protected folders I have set up, or on the portals of the various doctors.

Adam F.: We only talk with our family and among professionals, and we have not had concerns about privacy. Our family is well informed about our son’s brain disease and right next to him in a loving, helpful way.

Jilla D.: I make sure to focus and read through contracts or releases thoroughly! I used to be really good about shredding all health-related documents/mailings in my shredder for a while, but I have slacked on that as of late. I put myself as the point of contact on all accounts for my father so that he doesn’t risk getting spammed or dealing with businesses calling him. We recently (this year) changed the phone number that he had for many years because the spam calls became relentless, I surmise from the many data breaches that have occurred over the years. I tell my dad to tell anyone he encounters to “talk to my daughter” if he does not know what to do or is not comfortable. I probably should do more to ensure his security and privacy of information. But I often favor convenience over worrying about the privacy of information – e.g., email is an invaluable means of communication, and I use it when it is an option!!!

Nicole G.: About 1,000,000 times. That’s what we have to do, with every provider, every hospital, every everything. There is not one touch point where, as a caregiver, we are free to ‘let it be.’ No, we must advocate at every step of the way. Sometimes it goes well, sometimes not so well. Even though I have a power of attorney, I will STILL get blocked by some doctors. It is stunning.

Elizabeth V.: Yes. Especially during his last hospitalization, his social worker was very clear about the restrictions caused by HIPAA.

Insha H.: No, never. My son has never been hospitalized. But he did participate in the Hopkins Psychiatric Rehabilitation Program, and they were very sensitive and careful as privacy was part of their protocol.

Elizabeth V.: Probably not, unless I can learn ways to help my son sign releases or ways to get medical personnel to release information. I am confident that I understand the HIPAA boundaries.

Insha H.: I would appreciate guidance on HIPAA for myself and also to be able to share accurate information with others if the need arises.