What about the privacy rights of young adults with mental illnesses?
On December 27, while we polished-off the rest of the Christmas cookies and wondered where John Boehner found the time to get to the tanning salon amid fiscal cliff negotiations, something happened in Washington that went unnoticed.
California Congresswoman Laura Richardson, who had been defeated in November and was on her way out the door, introduced the “Elgin Stafford Mental Illness Information Disclosure Act of 2012” or “Elgin’s Law”. The bill would require the disclosure to parents of information regarding mental illness treatment for their children under the age of 26.
Who is Elgin Stafford?
I didn’t know either. Seems news of the suicide of a young man with mental health problems doesn’t grab as many headlines as a young man who slaughters a bunch of others with an assault rifle before taking his own life. But Elgin Stafford and the law introduced in his honor raise controversial issues that could touch the lives of countless parents and mental health professionals whose efforts to caution others about the behavior of troubled young adults is often hampered by privacy laws.
Elgin Stafford was found floating in a Los Angeles canal on March 29. He was 23-years-old. Stafford, had been an intern of U.S. Rep. Karen Bass (D-Calif.) and a graduate student, studying diplomacy at the Annenberg School of Communications and Journalism at the University of Southern California. His parents had emigrated from West Africa and by all accounts, Elgin was a well-rounded, ambitious young man.
Elgin’s parents have filed suit against a former university doctor, alleging that their son committed suicide because he had been sexually molested by the doctor. The lawsuit says Elgin was “repeatedly sexually violated and abused” by Dr. Robert Martin Kevess, while being diagnosed and treated for a sexually transmitted disease in 2010. According to the lawsuit, Kevess was also treating Elgin for depression and an eating-disorder.
The suit said Stafford’s “sense of trust and well-being was severely undermined” and that he “was plagued with nightmares of sexual violation, felt intense shame, humiliation and anger” and was suicidal. Kevess, has since been charged with 19 felony counts, including sexual exploitation of multiple patients, sexual battery with false professional purpose.
Under”Elgin’s Law,” a health care professional treating a patient under the age of 26 who is uninsured or insured under a parent’s policy for mental illness “shall disclose to a parent (if any) of the individual such information regarding the mental illness and treatment for mental illness as may be useful for the appropriate involvement of the parent with respect to the treatment.”
The proposed bill raises many questions, such as the definitions of “may be useful” and “appropriate involvement.” But it is underlying concept of Elgin’s law – bringing parents into the treatment of their adult child without the adult child’s consent – that has me concerned.
I have a 21-year-old daughter and I have bipolar II and alcoholism. I keep a very close eye on my daughter’s mental health, knowing that mental illnesses often run in families and that mental illnesses often manifest in early adulthood.
My daughter and I are very close. I want to believe that she would come to me if she needed any medical or mental health care. I also know she would not want to worry, shame or embarrass me – even though those things mean nothing to me when it comes to her health and happiness. Still, when she turned 16 and I took her to my gynecologist for her first exam, the three of us sat down and had a talk.
I told our doctor – a wonderfully caring female physician I have known for years – that I wanted my daughter to feel free to come to her without my daughter worrying that I would find out.
The three of us discussed this and decided that the doctor should decide when and if to involve me in treatment. Florida also has a law that gives teens privacy rights when it comes to certain reproductive health issues. I gave the doctor my insurance and credit card information. My daughter has visited her several times. My daughter makes her own appointments and voluntarily tells me the reason for the office visit. There has never been a problem.
But what if my daughter sought help for a mental illness? I would want to know. However, under existing privacy laws, my daughter’s psychiatrist/psychologist/therapist could not discuss my adult daughter’s treatment with me until my daughter had become so suicidal, homicidal or incompetent that the legal system would also be involved.
The more I think about Elgin’s Law, the more conflicted I am. Would the fear of parents finding out prevent a young person from getting help? Shouldn’t the mental health provider be aware of the family history of mental illness – the “white elephant” that parents often don’t share with their children? What if your 25-year-old son is married? Should his wife be notified, too?
If we’re going to take away their privacy rights for mental illness, what’s to say we shouldn’t do the same for young adults with HIV? And how come a 25-year-old on his parents’ insurance policy would be subject to Elgin’s Law but a 25-year-old on his employers’ health plan would not?
What about Dr. Lynne Fenton, the psychiatrist treating James Holmes, who was 24-years-old when he killed 12 people and wounded 58 others in a movie theatre in Colorado? She warned colleagues of her concerns that Holmes could be a threat to others. But what if she could have contacted Holmes’ parents earlier in his treatment?
Questions. I have lots of questions. We need to ask – and debate – these questions if we want to reform mental health care, as we have promised to do in the wake of the Newtown shooting. There are no stupid questions. The more questions we ask, the more knowledge we gain in seeking the answers.
Don’t be satisfied until you have found your own answers. Don’t let others answer for you. Regardless of whether you have a mental illness or know someone with a mental illness, we were all touched by Newtown. Together, we need to think this through and find our answers.
Stapleton, C. (2013). What about the privacy rights of young adults with mental illnesses?. Psych Central. Retrieved on April 21, 2015, from http://blogs.psychcentral.com/depression/2013/01/what-about-the-privacy-rights-of-young-adults-with-mental-illnesses/