In 1996, in response to concerns that the privacy rights of individuals were being violated, the federal government passed the Health Insurance Portability and Accountability Act (HIPAA), which instituted privacy protections for individually identifiable health information. Originally intended to protect the privacy of insured entities and the rights of patients, the HIPAA rule imposed extremely stringent controls on the use and disclosure of Protected Health Information (PHI). Paradoxically, the HIPAA laws in practice enable the perpetuation of abuses inflicted on the mentally ill in jails and institutions– the very people the laws were designed to protect.
In what is only the latest reported instance in a long history of abuses inflicted on psychiatrically ill prison inmates, a New York City corrections officer was arrested last week in connection with neglect of a mentally ill inmate with fatal consequences. Terrence Pendergrass, an 18-year veteran city corrections officer was charged with a single count of deprivation of rights for allegedly ignoring cries for help from a dying inmate in August of 2012. The investigation was conducted by the FBI and the Manhattan US Attorney’s office: the officer is now facing a 10 year maximum sentence. According to the criminal complaint against Pendergrass, the inmate, 25 year old Jason Echevarria, was housed in a unit for inmates with psychiatric illness when he swallowed a soap ball he had been issued to clean up a sewage backup in his cell. The soap ball contained ammonium chloride, and was supposed to have been diluted in water before being dispensed to inmates; the guard who issued the soap ball was apparently unaware of this requirement.
According to the complaint, a corrections officer attempted to make his supervisor aware of the inmate’s condition, but was rebuffed. A second corrections officer and a pharmacy technician also allegedly informed Pendergrass that the inmate was vomiting, but claim they were told that the inmate should “hold it.” None of the corrections officers on that shift filed any reports on the incident; Echevarria was found dead the next day. Ironically, Echevarria’s family might be considered fortunate in exactly one aspect: they knew where he was. Not every mentally ill inmate is as lucky.
As mentioned, Echevarria’s story is just the most recent installment in a long history of neglect and abuse of mentally ill persons who have the misfortune to also be incarcerated in prison facilities. In January of this year, the University of South Florida (USF) reported on the exhumation of 55 bodies on the grounds of the Arthur G. Dozier School for Boys; a full 24 more bodies than official records indicated should be there. Also in January of this year, ThinkProgress.org graphically reported on grievous abuses perpetrated on mentally ill inmates within the South Carolina Prison System. In February of 2012, the Associated Press reported on 79 inmate deaths in the previous two years in the Oregon Prison System: entirely – but for one, who had a press following – unreported. In 2009, RT.com reported that one in 10 deaths at U.S. Immigration Detention Centers go unreported; at the time of that account there were 400,000 people awaiting deportation.
It is tempting to dismiss these gruesome statistics as unimaginable in the free world. How could this happen in the United States, champion of human rights worldwide? Social injustice on such a vast scale requires more than just a lapse of supervisory neglect. It also implies a policy framework superficially legitimate-appearing, yet sufficiently flawed to allow the abuses to continue. The HIPAA laws were put into practice under the banner of protection for the mentally ill, but paradoxically ended up making possible outrageous violations and eliminating accountability for the institutions where those patients are housed.
A preliminary reading of the HIPAA training materials gives one a sense that all is right with the rules set forth; that patients’ rights are being protected, as well they should be. A closer examination raises real questions about how to implement supervisory protections for the inmates. For example, a facility may keep a directory containing a patient’s full name, location in the health care facility, and a general description of the patient’s condition, but psychiatric patients are restricted from inclusion, unless they choose to “opt-in” to the directory. Psychiatric patients may refuse to be included by signing a Request for Non-Disclosure of Facility Directory Information Form, which then goes into the patient’s medical record. Problems begin here, as patients who may be suffering from disorganization or paranoia can throw up bureaucratic roadblocks to outside entities (such as family or legal representatives) attempting to gain information about their psychiatric or medical condition. Paranoid patients may perceive the requirement to sign the Request for Non-Disclosure as coercive. Unethical mental health care professionals may use the requirement to sign the form as leverage, denying rights and privileges to patients contingent on their signature.
Another difficulty arises when an institution is requested to confirm or deny the death of a psychiatry patient; such information can only be disclosed to a parent, next-of-kin, or guardian; to someone who has filed a missing persons report on the patient; in response to a court order; or as required by law. HIPAA laws only permit the disclosure of such information to certain law enforcement inquiries, coroners, funeral directors, and medical examiners, in furtherance of their jobs; and to family, personal representatives, or other persons directly responsible for care of the patient. Public health authorities are permitted access to such information for the purpose of collecting vital statistics. So here’s the second, somewhat more intractable problem. The mentally ill, many of whom are dislocated from their families, residences, or places of employment, may choose to refuse information about their institutionalization to anyone who might be legitimately concerned with their survival. If no-one is aware that they are incarcerated in the first place, no one can initiate an inquiry about their status with the entities entrusted with protection of their health information. At this point, they are at risk of dying without a trace.
Contrary to the popular perception of mental asylums as shrub-lined luxury havens for the merely eccentric, the modern mental ward is likely to be under-funded, staffed by the under-paid, with few enforceable protections for the patients’ rights; a mental ward at a prison facility is likely to be even worse. The right to privacy for psychiatric patients is a reasonable concern, given the stigma associated with mental illnesses. However, with the best of intentions, the policy enacted for protection of the patients’ rights has had a paradoxical effect. By completely severing communications between an institutionalized mentally ill person and the world outside, allowing information to flow only through very restricted channels, the HIPAA laws have in practice rendered institutions invested with the care of the mentally ill, above the law.