What to Know About Social Media and Your Parents’ Privacy

Social media is everywhere now, it seems. But there’s one place that lawmakers and care-industry leaders say social media doesn’t belong: in nursing-home residents’ personal spaces. That’s because several dozen caregivers have been fired, and in some cases prosecuted, for posting privacy-violating pictures of vulnerable nursing home residents to social media sites without their knowledge or permission. Here’s what you need to know about social media and your parents’ privacy.

The problem of social media abuse in senior communities is rare, experts say, but the embarrassment and upset it can cause is real. That’s why the Centers for Medicare and Medicaid Services issued a memo to state health agencies over the summer, urging them to oversee nursing-home social media policies.

Know what’s acceptable and what’s not

It’s not practical to ban nursing home employees from using social media, but it is a violation of federal health privacy rules for them to share pictures of and personal health information about residents. It’s also a violation of ethics and best practices for them to share residents’ pictures without their written consent (or, in the case of patients’ with dementia, a responsible family member’s consent), even if the pictures are not offensive and no identifiable information is included.

Know the social media rules at your parents’ community

The American Health Care Association, a nursing-home and assisted-living trade group, issued general guidelines in June for social media use in senior communities. AHCA recommends that all facilities hold social-media training sessions for staff members so they understand the rules. It also suggests that social media rules be posted where staffers, residents, and visitors can see them.

The rules AHCA recommends for staffers include:

• No “friending” of residents or their families on social networks
• No sharing of residents’ pictures, birthdates, locations, or other personal information that violates federal HIPAA rules
• No video or audio recordings of residents
• Report suspected policy violations to management right away

If you hire in-home caregivers for your parents, you should discuss your house rules and expectations for your parents’ privacy with them and the agency that employs them.

Know what to do if you see a social-media privacy violation

Contact the nursing home or assisted living community’s management immediately if you see a social media post that you think violates your parent’s privacy or is demeaning. Take a screenshot of the post for proof and request that the offending post be removed from the site right away. Work with the administration to find out the extent of the privacy breach and follow up to find out what corrective and disciplinary measures they take with the employee. You can also report the incident to your state’s health department.

Know where to find more information

Privacy laws vary slightly from state to state, so if you have specific questions about what’s legal in your parents’ community, contact the state health department or attorney general’s office. You can also check the ProPublica website to see which communities have had severe resident privacy breaches, and you can check online reviews on SeniorAdvisor.com to see what other families and residents have to say about the staff and management at your parents’ facility.

Casey Kelly-Barton

Casey Kelly-Barton is an Austin-based freelance writer whose childhood was made awesome by her grandmothers, great-grandmother, great-aunts and -uncles, and their friends.