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Protecting Our Own: The Practical Implications of Illinois’s Authorized Electronic Monitoring in Long-Term Care Facilities

On May 31, 2015, the Authorized Electronic Monitoring in Long-Term Care Facilities Act passed through both houses of the Illinois Legislature following almost four months of revisions, subsequent amendments, and set against the backdrop of recent scandals involving issues of consent and protection of adults suffering from a variety of long-term or degenerative illnesses.  Effective January 1, 2016, the new legislation permits nursing home residents in facilities that are licensed under certain state legislation such as the ID/DD Community Care Act or Nursing Home Care Act to use audio or video surveillance in their room at their own expense.  The Act provides various criminal penalties for those persons that knowingly obstruct or destroy any device placed in one’s room.  Additionally, the legislation gives the Department of Public Health authority to establish and distribute a $50k fund for those in homes who would like to place monitoring devices within their room, but would otherwise be unable to do so due to the facility’s financial constraints.  The law has been updated and amended several times since its initial introduction in an attempt to balance competing interests such as the rights of the family, potential roommates, and facility. This leads to interesting policy questions regarding the effectiveness of the proposed solution and how it could alleviate negative circumstances but also further exasperate others in the long run.

Representative Greg Harris (D-Chicago) introduced the law as House Bill 2462, with the legislation intended as a measure of security for those who had concerns about the safety of their loved ones in nursing homes. This is a direct response to Illinois’ growing population of aging citizens, with the US Census Bureau predicting that by the year 2030, approximately 22.3 percent of the state’s population will be aged 60 and older.  Illinois currently has over 1,100 nursing home facilities housing about 76,000 residents.

While this legislation is something new for Illinois, the state joins others in an effort to protect some of the country’s most vulnerable citizens from possible neglect or abuse, giving family members peace of mind that the difficult choice of placing their loved ones in such care is the best possible way to provide them safety and the attention they may require at this critical time in their lives.  Illinois is the fifth state to enact such explicit provisions, following New Mexico, Oklahoma, Texas, and Washington, with other states such as Maryland providing guidelines for facilities that may choose to voluntarily allow recording devices based on the residents’ preferences.

The Illinois legislation tracks certain elements of similar laws established in the other states that have enacted such protective provisions.  For example, in Texas a resident requesting to have video recording in their room must give the nursing home prior notice, release the home from any liability for violations of the patient’s privacy rights, written consent from any roommate potentially sharing the space, and adequate notice to other parties through some kind of verbal indicator that they are also being recorded.  The revised Illinois law also adds that a roommate may request to have the recording device turned off at any given time period.

Such legislation regarding the resident’s rights in long-term facilities is timely, given the various controversies erupting in the media regarding quality of care, abuse, and neglect in nursing facilities.  In Texas, many were infuriated by a news story investigating three nursing homes in the wake of allegations of abuse and neglect.  The investigation revealed evidence of hospice workers verbally and physically abusing residents, leading many family members to file complaints and seek changes through legislative reform to better protect family members.

Residents may also benefit from this legislation in equally troubling ways: protecting them from their own family members.  This was most recently brought to the public’s attention in 2015 with the Henry Rayhons trial, a man charged with third-degree felony sexual abuse against his wife Donna Lou Rayhons, who had been suffering from severe Alzheimer’s Disease.  Mr. Rayhons’ eventual acquittal in April 2015 raised interesting questions regarding sexual consent and patients who may shift between lucidness and impairment.

Although Mr. Rayhons was advised by his wife’s nursing staff that her condition meant she could no longer consent to otherwise un-prohibited sexual activity, Mr. Rayhons allegedly continued to do so.  Despite the acquittal, the case sparked debate on what issues nursing homes had not developed clear standards on.  A camera in Mrs. Rayhorns’ room could have produced a different result.  It would work the same for other families whose own behavior may be inappropriate or harmful to the patient in question.  Cameras in patient’s rooms can discourage and end inappropriate activity between residents and their families.

While there are great benefits to the legislation recently enacted in states such as Illinois, negative concerns regarding electronic monitoring in patients’ rooms have sparked debate on the issues like privacy concerns and quality of care.  While some residents may feel more secure with a camera stationed in their room, others may feel uncomfortable about the living situation in general already. A recording device may further this distress in terms of having what little privacy they have left taken away from them, even if such footage or recording were never viewed anyway.  Additionally, the nature of growing old in itself brings up the time-old discussion of what it means to have, or die, with dignity.  Some residents may already experience resentment for having to rely on others for basic life activities such as bathing, feeding, or simply going to the bathroom.  Having these experiences recorded for anyone to potentially see may further undermine their pride and lead to negative psychological issues at an already difficult time in their lives.

In terms of quality of care, having cameras in the rooms may also affect the important relationships developed between facility caregivers and their residents.  The staff may choose to rely on the cameras to monitor residents rather than engaging in direct communication, potentially leading to mistrust and even a greater substandard of care that such legislation was meant to combat in the first place.  Residents may never truly feel comfortable without the bond usually fostered between the two parties, contributing to a negative experience.

As such legislation regarding the rights and protections of nursing home residents has only been recently developed and put into practice, making it hard to predict what the true legacies of solutions such as the Authorized Electronic Monitoring in Long-Term Care Facilities Act may be. Such legislation is meant to be both remedial and preventative in light of the issues affecting our increasingly aging population.  However, it may also be detrimental to those who the legislation was meant to protect in the first place by affecting their quality of life in the long run.  Upon implementation in the year 2016, how the act is enforced by the various parties involved could contribute to mixed results amidst conflicting policy interests.  Until actually implemented, only time will tell how these uncertainties will play out in Illinois, with only the experience of a small number of other states to look to for guidance in light of impending practical and legal issues.

Samantha Grund-Wickramasekera is currently a law student and Jaharis Health Law Fellow at DePaul University of College of Law. Ms. Grund-Wickramasekera completed her Bachelor of Arts at DePaul University, double majoring in Political Science and Women's and Gender Studies, minoring in LGBTQ Studies in 2014. She will complete her law degree in 2017.