Privacy Law Frustrates Parents Of Mentally Ill Adult Children


#1

The horrifying mass shooting in Isla Vista, Calif., last month brought up many questions. What could parents have done to prevent the tragedy? And what did they actually know about their son’s mental illness?

A privacy law called the 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.

http://www.npr.org/blogs/health/2014/06/04/318765929/privacy-law-frustrates-parents-of-mentally-ill-adult-children


#2

It was a constant struggle until I was awarded guardianship. I used the fact that even tho the provider couldn’t tell me much but I was free to tell them whatever I felt would help, as much as I could.

I also learned to speak hypothetically with the providers - in that way they could communicate with me without speaking directly about my son.


#3

It just makes me wordless to find out that my parents and all other care givers have to go through so many hoops and play ring around the elephant to just get basic help to their loved one.

My parents said it took them ages to get reassurance that I wasn’t being given a certain amount of clozapine because I would break out in a rash and puke a lot. The docs wouldn’t even disclose what I was being given.

I understand the right to medical privacy and I am very glad there is some, no matter how thinly veiled. But this is a good idea being taken to silly extremes. The gov. can find all this out in a heart beat, but my own family can’t be told where I am, how I’m doing, if I’m being given meds that I’m highly allergic to. That is silly.


#4

yes, this makes me angry too. I had a mentally ill man in my home, I was his spouse, they wouldnt tell me anything either. So, I divorced him as I could actually see what he was doing, and what he was actually doing never mapped to what the dr’s told me. it was such bullshit.


#5

I think understanding the privacy laws can at least help caregivers maneuver a little bit better. I wasn’t surprised when I got told, once my son was not considered to be in an emergency situation anymore, that they couldn’t tell me what meds he was on etc. due to privacy laws.

I have read some of HIPPA and the Canadian one and it is actually up to the discretion of the medical staff to decide what information is necessary to share. I guess they are afraid of being sued by patients? I know with my son that some nurses were more forthcoming then others and would tell me about his medications since they knew I was his mother and by his actions/words he wanted to be released to me which implied a certain amount of consent.


#6

My son stays with my mother. One time he would walk into the woods and scream. The voices were tormenting him. She went in the doctors office and ask him to tell the doctor what was going on in private not to his it. He was ashamed of voices but the doctor can’t help if he don’t know. The voices would tell him to commit suicide. My sons father killed himself. The doctor would not listen. A doctor I work with said fax him a letter to be part of the chart and he got a new attitude. My son could not talk when he was in Alabama. I wanted to know his chances of speaking again. I was not to ask this because of hippa. The doctor we have now interprets hippa different thank god. All caregivers should be on the same song page.


#7

When I went to see my new psychiatrist for the very first time during my evaluation, she asked me my age, because I was transitioning between antipsychotics - I was not very well - not 100%. I could not for the life of me remember my age, so I turned to my dad who was sitting next to me, and he answered. After the session the doctor gave me a slip to be signed by my father and myself - it was a consent form giving her the authority to talk to my father directly about my treatment. I gladly signed the papers. I want certain people close to me to be a part of my treatment plan - should an emergency arise especially


#8

Guy wasn’t mentally ill in my opinion, watch his video and you can see he wasn’t mentally ill.

Guy was just evil. Willing to kill people because he wasn’t getting the much deserved(in his mind) sexual worship of women.


#9

I signed all sorts of paperwork so my parents could be part of my treatment plan and be informed of how I’m doing and be part of my crisis team.

Having them with me a few times really did save me.