“Where is my son?!” the woman asked, panic putting an edge on her voice. She knew only that a social worker had assisted in the missing man’s release from the Louisiana inpatient facility where he had been receiving treatment. “I’m sorry, HIPAA rules do not allow me to share that information with you,” the social worker replied, leaving the increasingly frantic woman with no clue where to begin her search.

This kind of thing happens all too often, and not just in Louisiana.

During sometimes emotional testimony Jan. 20 before the U.S. Senate’s Committee on Health, Education, Labor and Pensions (HELP), Penny Blake, speaking on behalf of the Emergency Nurses Association, recounted another heart-breaking story on the same theme. A man had come into a hospital emergency room, and though his parents had been calling around looking for him, Blake couldn’t tell them he was there. Which meant she also could not get critical medical information from them that would have helped her provide better treatment.

An often misunderstood federal law known as the Health Information Portability and Accountability Act (HIPAA) is the root of the problem — and a source of great frustration for families and caregivers dealing with mental illness. All too often people find themselves shut out of their loved ones’ troubled lives, notwithstanding a blunt truth: Mental illness regularly renders persons in crisis unable to make sound decisions regarding their own wellbeing.

HIPAA was designed with good intentions — to protect patient privacy — but it has proved to be a nightmare for families and caregivers. A patient’s whereabouts and essential details of the case file, including treatment plans, doctor appointments and prescriptions, remain locked behind secret codes that only the patient can give authorization to open, even if that patient is delusional.

Healthcare providers often misinterpret HIPAA’s privacy rule, going so far as to refuse to advise family of a patient’s condition. And in some instances, families are told that under HIPAA rules they cannot even provide a doctor with information critical to a patient’s care. In fact that was part of the misfortune that befell the emergency room patient in the case Nurse Blake spoke about.

Whether their years of work will come to fruition under the fledgling Edwards administration remains to be seen.

So frequent are such misinterpretations that, in January 2013, Leon Rodriguez, then director of the Office for Civil Rights at the federal Department of Health and Human Services, penned a letter to the nation’s health care providers clearly stating that in situations where a patient “presents a serious danger to himself or other people” HIPAA does not limit their ability to disclose necessary information about the patient to law enforcement, family members of the patient, or other persons.

The HELP Committee will be assessing ways to improve HIPAA rules over the coming weeks and months, including consideration of the proposed Bipartisan Mental Health Care Act of 2015 (S. 1945). The act, co-authored by Louisiana Sen. Bill Cassidy, a Republican, and Connecticut Sen. Chris Murphy, a Democrat, includes a provision to:

“Clarify the circumstances in which HIPAA permits health professionals to communicate information to family members or other caregivers, [and] support training of health care providers about the circumstances in which information can be shared with caregivers.”

The companion to the Senate bill in the lower house is H.R. 2646, “The Helping Families in Mental Health Crisis Act.” It is also a bipartisan effort, co-authored by Pennsylvania Republican Tim Murphy and Texas Democrat Eddie Bernice Johnson. The bill seeks to clarify existing sections of the HIPAA Privacy Rule and to “assure that doctors and caregivers can communicate during a mental health crisis.” It permits a “caregiver” to receive protected health information when a mental health care provider reasonably believes such disclosure is necessary to protect the health, safety or welfare of the patient or the safety of another. The definition of “caregiver” includes immediate family members.

Some states are taking HIPAA reform into their own hands, rather than waiting for Congress. Arizona state Sen. Nancy Barto recently penned a concurrent resolution that would recognize family, caregivers and guardians of the mentally ill as an integral part of their treatment team.

For those families who may be in crisis now, and cannot wait for federal or state legislation, there are resources. Knowing more about HIPAA rules can convince providers to share vital information. Family members can learn more about the law and their rights online.

Louisiana has its own champions for mental healthcare reform, including Sens. Regina Barrow, D-Baton Rouge and Ben Nevers, the Bogalusa Democrat selected by newly inaugurated Gov. John Bel Edwards as his chief of staff. State Reps. Ronnie Edwards and Patricia Smith, both Baton Rouge Democrats, have also joined in the fight. Whether their years of work will come to fruition under the fledgling Edwards administration remains to be seen.

Advocates will be closely watching – and participating – in the process.

Janet Hays is director of Healing Minds NOLA, which brings together residents, families and stakeholders to explore alternatives to incarceration, homelessness and death for those who suffer from the myriad forms of mental illness.