HIPAA Laws; Practice and Paradox for the Mentally Ill


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 HIPPA 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.

By Laura Prendergast


NY Times



8 Responses to "HIPAA Laws; Practice and Paradox for the Mentally Ill"

  1. irma perty   January 10, 2018 at 5:52 pm

    I am sick and saddened by this hippa law. why are mentally ill patients able to make decisions for their mental health.They can not make these decisions , when they clearly are not in their right mind . How is this helping them?
    Clearly this laws, keeps family members from getting treatment and input into their love ones
    Because of this law. My son can not get help he needs and I have to stand by .while he is becoming a shell , with no future
    Why do we have so many homeless in streets, only becaue members can’t get them the care they need they need.
    This is not to protect our love ones.. , law needs to be changed.Our love ones need our help

  2. Matthew Geesling   April 2, 2014 at 6:13 am

    Why does HR3717, Helping Families in Mental Health Crisis Act Prioritize the Seriously Mentally Ill?

    There are now two mental health systems in the United States. One is run by traditional mental health departments and serves the highest functioning. For ex. ending “bullying” is the new cause celebre of the traditional mental health system. The other mental health system is run by criminal justice and serves the most seriously ill. There are three times as many Americans incarcerated for mental illness as there are in psychiatric hospitals. The traditional mental health system largely ignores the most seriously ill causing their transfer to criminal justice. That is a ‘success’ for the mental health system: one less person they have to treat.

    The US Mental Budget is largely spent to improve mental health (make people happier) not to provide treatment to the most seriously mentally ill. We send the worried-well to the front of the line for services and the seriously mentally ill to jails shelters, prisons and morgues. There has been intensive, massive, mission-creep as every life experience is medicalized. This intentional, disastrous and massive migration has caused our mental health system to be simultaneously expensive and disastrous and dangerous.

  3. Matthew Geesling   April 2, 2014 at 6:12 am

    HR 3717 Preserves enough psychiatric hospital beds for patients with serious mental illness who need them.

    There is a nationwide shortage of at least 95,000 beds for people with serious mental illness. This is largely due to an obscure provision of Medicaid law called the Institutions for Mental Disease (IMD) Exclusion. It basically tells states, “if you kick someone with mental illness out of your state hospital, we (the federal government, through Medicaid) will pay half the cost of any community care you provide. So the states lock the front door and kick people out the back to make them Medicaid eligible, no matter how inappropriate the discharge is. HR 3717 makes two narrowly tailored exceptions to the IMD Exclusion, to remove the federal incentive to provide substandard care.

  4. Matthew Geesling   April 2, 2014 at 6:11 am

    HR 3717 funds pilot Assisted Outpatient Treatment Programs.

    HR 3717 provides pilot funds for states that want to set up AOT programs. AOT allows judges to order very narrowly defined individuals-only those who have a past histroy of arrest, violence, or needless hospitalization caused by failure to stay in treatment-to stay in mandatory and monitored treatment as a condition of living in the community. It is not an alternative to voluntary treatment, it is only used when that fails.Assisted Outpatient Treatment has dramatically reduced arrest, violence, sucide, hospitalization and homeless in every state that has used it. HR 3717 reqires states to have AOT on books (although not to use it), in order to receive Community Mental Health Service Block Grant funds and allocates $15 million for pilot program funding of up to 50 AOTprograms per year.

  5. Matthew Geesling   April 2, 2014 at 6:10 am

    HR 3717 Removes HIPAA Handcuffs and Reforms FERPA so parents can get info they need to help provide care to seriously mentally ill loved ones.

    HIPAA and FERPA are patient confidentiality laws that prevent the disclosure of medical information to parents of persons with mental illenss. Hence parents are unaware of diagnosis, treatment, appointments, and oher info they need to provide care to loved ones and prevent their needless deterioration. HR 3717 carves out an exemption in HIPAA and FERPA so caregivers can receive important information about a mentally ill loved ones diagnosis, treatment and prognosis if that information is needed by the mom or dad to protect the health, safety or welfare of their family member.

  6. Matthew Geesling   April 2, 2014 at 6:09 am

    Background: HR 3717 Helping Families in Mental Health Crisis Act

    HR 3713 (introduced by Rep. Tim Murphy on 12/12/13) is the first bill to (1) focus on serious mental ‘illness’ and (2) to address multiple systemic problems in federal mental health policy that favor the largest number of the highest functioning but leave the most seriously unserved.

    Focus on treating the seriously mentally ill, not improving the mental health of all others.

    HR 3717 reorients the $204 billion US Mental Health budget towards treating the 5-8% who are most seriously mentally ill and away from loosely defined, non-evidenced based programs designed to “improve the mental health” of all others.

    HR 3717 attempts to end mission-creep by instilling mission control.

    This is the best way to improve care, reduce violence, sucide, victimization, homelessness, hospitalization, incarceration and needless tragedies. It saves money by reducing the use of hospitals and jails to serve people who can live in less expensive community settings.

    Put another way, the problem is not that we don’t spend enough, it is that we don’t spend it efficiently.

  7. Harold A. Maio   April 1, 2014 at 3:00 pm

    the HIPAA laws have in practice rendered institutions invested with the care of the mentally ill, above the law.

    When was this not so?

  8. Harold A. Maio   April 1, 2014 at 2:56 pm

    HIPAA Laws; Practice and Paradox for the Mentally Ill

    Hopefully you meant:

    HIPAA Laws; Practice and Paradox for Mental Illnesses


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