Sunday, April 12, 2009

How HIPAA patient privacy laws block up the system and keep the stigma alive

Should families still get access to information about their loved ones even if it is held confidential?

Federal HIPAA laws, once they were instituted in 2003, joined the existing NY State Mental Hygiene Law to protect the confidentiality of treatment records of mental health clients and patients. The two laws overlap one another, with the stricter (most confining) of the two applying to the particular case where there is a challenge or disputed authority, we are told.
HIPAA stands for the Health Insurance Portability and Accountability Act regulations of 2003 and covers all health care procedures and health plans while the state law's confidentialty requirements apply to clinical records alone.
These rules have caused a helluva lot of trouble. Providers like hospitals and housing agencies dare not slip up in this regard—penalties are severe for violations of the statutes. A doctor or social worker or facility manager can lose his license or lose his job by playing loose with HIPAA regulations. And to avoid having this happen, nearly everyone in the field except maybe the Ellis groundskeeper knows you keep things secret and you don't ask direct questions about someone's mental illness without a sharp rebuff.
The hospitals and clinics, even the consumer social club in Schenectady trumpet “patient confidentiality” whenever anyone tries to get information about a client of theirs. The laws have become so all-encompassing and so conservatively applied that one view is that the agencies are protecting themselves more than the clients they serve by reciting HIPAA law's protections
When it comes to clinical treatment, HIPAA laws do not let family members of adult patients obtain information that their relative does not consent to. The patient or client has the right to agree or object to disclosure to family members or those involved in their case, according to a handbook for patients, families, providers and others published by the NYS Office of Mental Health and found on its website.
This is confusing to family members who genuinely want to help their loved one in his or her recovery, the guide points out, and families agree. Relatives of family members with mental illness have told others at the local support and education group meetings how exasperated they were to be denied information as basic as whether their son or daughter was admitted as a patient at Ellis.
A few years ago a Schenectady father was hunting his missing mentally ill son after it was reported to police in Albany the man was hurt in a fight on the street. Both CDPC and Ellis Hospital wouldn't say if he was hospitalized there. Later, after a long and agonizing search throughout neighborhoods, to former addresses, the City Mission and two jail houses, his son was found—and he had been a patient at CDPC at the time of the inquiry. And more recently a Scotia man who was arrested on assault charges absconded from his home and drove his car away, left the car at the airport and disappeared. He was found months later when a police officer in a Georgia jail finally called his parents back here about the missing man with mental illness in their lockup
Why the extreme secrecy? Local mental health housing sponsor Mohawk Opportunities asks new residents to list names of those to be contacted for routine communications and in emergencies. If he or she fails to fill in the blanks on the form, in the past the agency has told us it will not notify parents that their relative lives there, if questioned about it. The staff is instructed, however, to suggest that the resident review his or her decision as time goes by
The guidelines say providers are legally obligated to honor the wishes of a patient who withholds permission to make disclosure to family members. In the case of a minor child who is not in legal custody of his parent or guardian, only the county Social Services department is authorized to receive disclosures. The whole idea of such arms-length protection would seem to be that these are very vulnerable people who we have run roughshod over the in the past and we can't let it continue to happen. By hiding identities, mentally ill adults and children cannot as easily become the victims of other people's bullying, shaming and lying about the true nature of mental illness.
Instead of this, hasn't the secrecy behind the HIPAA laws perpetuated the stigma and shame that we don't want to acknowledge about our mentally ill relatives? We are forty years into the modern era of mental health treatment based on science and medicine and we can't openly share information about those with no-fault diseases?
With privacy laws, the agencies can curtail any speech about this person at all, not just clinical information that might compromise his or her rights to privacy. As a result, the secrecy surrounding where these people are and what they're being treated for is bad. The laws should be changed to allow good sense to prevail.
And one thing more. I'm convinced that research into behaviors of mentally ill patients and prisoners can't go on because of the hurdles placed in the way of open access to treatment records, set up by the HIPAA laws. Throughout the nation we have bands of tidy watchkeepers called institutional review boards who must review every research project involving these people. These board members are spirited to block every bit of research they can if it reveals the slightest disclosure of the individuals who are subjects. As a result very little sociological research is done on populations that are normally used for this purpose and the quality of research has suffered, too.
Wouldn't it be better to unfreeze some of these rules and let people do the research work that helps us better understand prisoner or patient behaviors? No one's willing to open the bottle to let ideas flow, so we all remain blind to many aspects about mental illness and behavior. (Roy Neville)

1 comment:

  1. August 13, 2010
    51-year old woman in Michigan
    It is hard to find words to summarize what is happening. Prior to HIPAA, families were looked upon to be educated about mental health, including what meds their loved ones were on and how to care for them. There were support groups for families. But in our public mental system of today, my sister (my dear twin) is treated as a single adult who can make her own decisions about what kind of life she wants. Like painting a picture, my sister is not the person that she displays to her workers as she is with me. It is frustrating to be told by recipient rights that I can provide information in this new system of HIPAA but that if no release of info. is given, the information justs falls back on my sister and then even though not directly told, I feel I am getting in the way when all I want to do is help.