Miller visited a neurologist and after a battery of tests was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. ALS is a progressive neurological disease that is most often fatal within five years.

It took Miller several months before he told anyone outside his family that he was dying, according to his prognosis. When he was ready to share the news with others, he told one of his closest friends, his boss. During their conversation, Miller made it clear that he didn’t want HR to know of his illness.

His boss persuaded him otherwise. He explained to Miller that the HR department should know so it could ensure that he received accurate information about insurance and benefits. Most importantly, HR would be in charge of facilitating accommodations that may be needed as the disease progressed.

HR Needs to Sell Its Value

Line managers who try to handle HR issues aren’t likely to be successful. Despite a manager’s good intentions in trying to help the employee, there still must be a separation between health issues and performance issues.

To keep these handshake deals from becoming standard operating procedure, HR needs to consistently stress to all staff members that it can provide valuable experience and resources to a colleague in crisis. HR needs to “sell” its value, which requires getting out from behind a desk, talking to employees, and building relationships with both management and staff.

“HR keeps employees from having to disclose medical information to their manager, who makes decisions about job assignments, promotions and pay. It’s best to keep performance evaluation and private medical information separate if possible,” said Kelly Marinelli, SHRM-SCP, a senior partner at SolveHR Inc. in Boulder, Colo.

To get HR on board, Miller spent time educating the department about ALS, its symptoms and the telltale signs that his body was changing. Miller shared his doctor’s assumptions about how ALS would impact his job. He explained that in the first year after diagnosis, there was a good chance that there wouldn’t be any significant changes. After the first year, however, all bets were off.

Miller met occasionally with HR to update his contact on his health. In the beginning, the update process consisted of his poking his head in his HR contact’s door and giving a thumbs-up—all was well.

Fourteen months after his diagnosis, Miller noticed that things were starting to change: His gait worsened, he was consistently stiff and off balance, and his energy level had dropped. He approached HR to figure out his employment options moving forward.

Employee Next Steps

• Take a leave of absence under the Family and Medical Leave Act (FMLA), which would give him 12 weeks of unpaid leave but full group health coverage. His job and salary would be protected.
• Take short-term disability (STD).He was eligible for six months of STD at a portion of his salary. Typically, employees can expect to receive between 40 percent and 60 percent of gross weekly income.
• Take long-term disability (LTD) once STD expired. Long-term disability pays between 50 percent and 60 percent of gross weekly income. Generally, LTD pays an employee for two years, but the duration can change depending on the organization’s policy.

Miller said that his top priority was to keep working. He wanted to continue to feel productive and spend time among his co-workers. HR said that he was entitled to a fourth option—job reassignment—if there was an opening within the organization. HR made it clear that he would likely have to accept a pay cut and relinquish his vice president title. Miller didn’t care; he just wanted to work.

HR assured Miller that regardless of the option he selected, he was protected by the Americans with Disabilities Act. It states that if reasonable, employers must make accommodations for applicants and employees.

It didn’t take long for Miller to accept a more junior position in order to stay active and be around people. His new position eliminated the need for travel, and his company accommodated his request to telecommute as often as needed.

Miller was fortunate to work for an organization that was willing to move him to a new position, albeit at lower pay. Not all organizations are warm to the idea of moving an employee from one position to another. “The reason is that if the company sets a precedent, [it] will need to do the same for all others [who may follow], and that’s not a sustainable business practice” because there’s not always an open position, Marinelli said.

Now, 15 years after his diagnosis, Kurt Miller is still alive. He has long-term ALS, as did renowned physicist Stephen Hawking. Miller will turn 59 in July, and he says his doctors think he might live another 10 years.

When Heart Disease or Cancer Strikes

When Sheri Seltzer was 36, she was diagnosed with lung cancer. Seltzer was a single mother of two and worked in the fulfillment department for an online retailer in Illinois. The job required Seltzer to stand for long periods, lift boxes and walk through the fulfillment center often.

After Seltzer was diagnosed, she advised HR that she needed time off for chemotherapy and radiation. She was told that under FMLA, she was entitled to 12 weeks of unpaid leave, no loss of seniority and no reduction in salary. HR also explained that STD and LTD leave were available if she needed extra time off.

When Seltzer returned from treatment, she found it difficult to perform the duties of her job, so she went to HR for advice. She was asked to have her doctor write a note explaining what she could and couldn’t do. Once Seltzer gathered her documentation, HR moved her to another department where she could better handle the responsibilities, and she continues to work in that department today.

“In a perfect world, HR will ask an employee, ‘What do you need from us?’ If the process works correctly, the employee will get a note from his or her doctor stating the nature of the illness, after which HR will match the job description against the doctor’s note,” said Terese Connelly, a labor and employment attorney at the firm of Culhane Meadows in Chicago. “You let the two marinate together, and hopefully you have a good plan of action.”

Connelly says that because Miller and Seltzer were willing to trust the system and be transparent with HR, they both reached reasonable accommodations.

Saying Goodbye

Whether an employee chooses to leave or the organization runs out of reasonable accommodations, eventually the ill person will no longer work at the organization. Undoubtedly, some will feel a loss.

When an employee leaves the group, it might be appropriate to host a party with the employee’s friends and family in attendance. Sometimes the organization will invite the former employee to company parties or to help celebrate milestones, such as someone else’s retirement.

“The culture of the organization will dictate what happens when an employee leaves,” Marinelli said. “If there is a very warm, close relationship among co-workers, I would suggest that people stop by to visit the retired employee at home, take the employee a casserole or check to see that their yard looks good. It shows you care.”

Before an employee leaves, HR needs to be clear with the staff that once the employee departs for the last time, HR cannot provide personal information, so if anyone wants to stay in touch, it’s a good idea for employees to exchange contact information.