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As suddenly as he lost his ability to speak last fall, Stuart Sanderson’s connection to the world outside his Philadelphia nursing-home room was severed because of anxiety over a simple webcam.
A compact video camera on his computer monitor allowed him to speak to family even without a voice. Stu, as he prefers to be called, has cerebral palsy, but video calls put him in touch with his ailing father and his brother, who would take the time to read his lips.
But to Inglis House, the nursing home where he has lived for decades, the camera was a watchful eye, scrutinizing its staff’s every move and capturing images of people whose privacy they’re responsible to protect.
Stu’s computer equipment was abruptly removed in mid-December, and he was asked to write a note defending his access to it. Family members called it a “cruel hurdle” for a man with limited mobility who selects each letter by pushing the back of his head against a switch.
In another note pleading for his webcam to be returned, Stu, 59, wrote: “WE ARE NOT SPYING ON ANYBODY!”
The Sandersons unwittingly became part of a splintered national debate about the role of video cameras in long-term care facilities.
The conversation includes webcams used for video calls, clocks with hidden pinhole cameras, and motion-activated cameras that broadcast live video feeds to laptops and smartphones.
The cameras can be used to deter or catch abuse and neglect, but they also threaten the privacy of other patients and employees.
At a time when police officers wear body cameras and average citizens check video feeds of their children and pets at daycare, the long-term care industry is being forced into a game of catch-up.
Learning what works
For nearly a month, Stuart Sanderson felt isolated and upset that he was being cast as a troublemaker.
When his brother, Scott, visited on the weekends, Stu — a published poet and college graduate — revealed that he had been asking to be put to bed early. He didn’t want to cause any more problems.
Even when Inglis House returned the electronics, tension lingered. Signs warning of advanced surveillance were plastered on the walls of Stu’s room. Caregivers covered or moved the webcam and forgot to reposition it, Scott Sanderson said.
Inglis House made adjustments. They posted just one, friendlier sign and told the staff not to touch the equipment. If the webcam’s orange light was on, Scott said they were advised to ask Stu if he was comfortable receiving care.
The facility is now drafting a policy to address cameras for communication needs and those used to monitor care, either visibly or covertly, said Gavin Kerr, president and CEO of Inglis House, a nonprofit nursing home that serves about 300 people with complex disabilities and health care needs. He said the policy will support residents’ rights to cameras as long as they notify staff.
“One of our core values is learning, and any organization that is going to get better is constantly learning what works and what doesn't work,” Kerr said. “I think we've made some mistakes in the process and apologize for those mistakes and are really trying to get it right going forward.”
On their own
Inglis House and other nursing facilities in Pennsylvania are flying blind.
Pennsylvania doesn’t have regulations pertaining to cameras in nursing homes. A state wiretapping statute forbids audio recording without the consent of all parties; video is fine, though. Federal guidelines prioritize residents’ rights, but there are conflicting interpretations.
So individual facilities are left to figure it out on their own.
A handful of states took that decision out of their hands. In 2001, Texas became the first state to expressly allow electronic monitoring in long-term care facilities.
New Mexico, Washington and Oklahoma followed suit. Maryland gave its nursing facilities guidance on how to properly allow cameras, but left it up to them if they will permit it.
Legislative bodies in two more states, Illinois and Missouri, are considering proposals.
No state has passed a law banning cameras in nursing facilities.
The laws generally require that administrators are notified of the camera and that consent forms are signed by the resident and any roommates. Signs notifying staff, residents and visitors of the cameras are required at the resident’s door or the facility’s entrance.
Illinois Attorney General Lisa Madigan, in her proposed legislation, calls for the recordings to be admissible in court, and creates penalties for tampering with cameras or recordings.
“At some point, we are all likely to face having a family member in a nursing home,” Madigan said in a September statement. “Providing residents and their families the option to install monitoring devices in their rooms will provide peace of mind that our loved ones are being cared for in the best possible manner.”
Mocking and slapping
Hidden cameras have caught abuse at Pennsylvania long-term care facilities.
In three notable cases out of Bucks and Delaware counties between 2011 and 2014, families had suspicions and set up cameras. The recordings captured mocking, manhandling and slapping.
Collectively, six caregivers were arrested, one nursing home was closed and another operated on a provisional license until it made state-mandated corrections.
Attorneys general in New York and Ohio have used hidden cameras in similar cases. The Pennsylvania Attorney General’s Office has not used hidden cameras to investigate long-term care facilities, “but that doesn’t mean we wouldn’t,” said spokeswoman Carolyn Myers.
The Pennsylvania Health Care Association, with nearly 450 long-term care providers as members, has not made any rules on the use of video cameras, said CEO Dr. Stuart Shapiro.
‘I would want to know’
The use of cameras has always been a gut-wrenching notion to elder advocate Diane Menio.
Someone’s privacy and dignity will be eroded by the footage. On the other hand, the monitoring could save a life or act as a deterrent.
Menio, executive director of the Philadelphia-based Center for Advocacy for the Rights and Interests of the Elderly, spoke of a friend whose mother says her caregivers are abusive. The staff shrugs it off and reminds the friend her mother has dementia.
“I said to her, ‘If you feel uncomfortable with this, just go get yourself a camera,’” she said. “My mother had dementia and if I had suspected abuse, I would want to know and I would fight for my right to do that.”
The cameras are easy to come by with a basic online search: A hidden-camera alarm clock equipped with night vision and motion-activated recording starts at $99. A $400 air purifier has a tiny camera that can store recordings for up to a month.
The hidden variety also come in coat hooks, picture frames and tissue boxes. Some people opt for visible security cameras to let the staff know they’re watching.
Covert or not, consent by the resident is of the utmost importance, and that’s a slippery concept with people who have dementia or other illnesses that might make them incapable of that decision, Menio said.
Too many family members decide to use video cameras because they feel the duty to protect a frail loved one, said Nina Kohn, a Syracuse University law professor who specializes in elder law and the civil rights of senior citizens.
“You have to ask, ‘What would this person want?’” Kohn said. “My sense is there are very few people who would say what I want is to have every aspect of my life recorded — my toileting, my care, my sexual relations — and then have it watched by my children.”
Video cameras have helped to catch abuse and prosecute those who inflicted it, Kohn acknowledged. But, “the fact it can be a valuable tool doesn't mean it should become default or we shouldn't be concerned about its use.”
Pennsylvania does not have a law on cameras in nursing homes. Click here to discover how you can make your voice heard.
Several elder advocacy organizations support the use of video technology when the resident wants it and privacy safeguards are in place.
“You’re dealing with a vulnerable population and if a resident wants that to feel more comfortable, we certainly think they have right to have that type of monitoring,” said Amity Overall-Laib, a manager at The National Consumer Voice for Quality Long-Term Care.
AARP has a national policy supporting the use of cameras for communication and surveillance, said Ray Landis, advocacy manager for AARP Pennsylvania.
But without set standards in most states for how video cameras are used in nursing homes, how secure is it?
Many nursing facilities may not have the technical expertise to spot potential breaches in security, said Majd Alwan, senior vice president of technology at LeadingAge, a national association of 6,000 not-for-profit providers of aging services.
And there are concerns about what’s being done with images now that it’s so simple to share content online.
“The digital age makes these things complicated,” said Patty Ducayet, Texas’ state long-term care ombudsman. “It’s captured and then we put our faith in the person collecting the information to use it the way we thought it would be.”
Communication before cameras
Both facilities and families can do more, before suspicions rise to the point of surveillance.
Alwan suggested families create relationships with administrators and caregivers and join the family council.
More and more nursing facilities and retirement communities, he said, are using video conferencing for caregivers to meet with family and are also offering personalized calendars and email updates to show what residents do all day.
“I believe that can go a long, long way, much better than the broad blanket use of cameras,” Alwan said.
No matter what they do to quell concerns, the technology isn’t going away.
Gavin Kerr of Inglis House said he would encourage other nursing homes to start planning now. Talk to residents, families and employees; exchange ideas with friends at other facilities; and look for opportunities to better residents’ lives with technology, he said.
“Ultimately, the key here is to really provide care and build relationships, so that hidden cameras aren’t necessary,” he said. “I would not wait until the government provides guidance and direction because the technology is exploding so incredibly fast.”
Pennsylvania does not have a law on cameras in nursing homes. The state defaults to federal guidelines that protect the dignity and privacy of nursing-home residents, but they do not address the use of cameras.
If you want the state to address this one way or the other, contact:
- Your local ombudsman program or the state ombudsman. Here’s a list of contact information by county. Wilmarie Gonzalez, the state long-term care ombudsman, can be reached at 717-783-8975.
- Your lawmakers. Find your legislators by your address or county here.
- Industry associations, like LeadingAge PA or the Pennsylvania Health Care Association.
- Advocacy groups, like the Center for Advocacy for the Rights and Interests of the Elderly at 215-545-5728 or the Disability Rights Network of Pennsylvania at (717) 236-8110.
- Us! Leave a comment on our Facebook page, or tweet to us @PublicSourcePA.
If you are interested in installing a camera for communication or monitoring, and you want to know how your loved one’s nursing home handles the issue:
- Talk to an administrator about your concerns.
- Ask for a copy of facility rules and regulations.
- Join the family council and urge your loved one to participate in the resident council.
- Know that there are no state laws against the use of video recording, but audio without consent of all parties is illegal in Pennsylvania.
- It is suggested that you inform the facility administrator of any cameras and obtain consent from both the resident and any roommates.
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