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5 Ways Employers Can Support Rare Disease Caregivers in the Workplace

By Gina D. Wagner

If the past couple of years have shown us anything, it’s that caregivers are some of the most burdened employees in the workforce. Providing childcare, eldercare, or rare disease care while trying to work from home has proven difficult, if not impossible. It’s one of the reasons so many are leaving full-time employment. 

According to Prudential’s 2021 “Pulse of the American Worker Survey,” American workforce expectations are shifting. Of the workers surveyed, 38 percent identified themselves as caregivers. And, 30 percent of those caregivers said they provide care for someone with a disability or chronic health issue.

In order to recruit and retain talented people, employers will have to address the needs of these caregivers. This means implementing some important changes to support work-life balance, including flexibility for caregivers.

There’s hope on the horizon as politicians are reckoning with the issue of paid leave. As of 2021, America is one of only a handful of countries that doesn’t offer any national leave. But employers don’t have to wait for a national policy to support caregivers. Here are five ways organizations can make work and life easier for caregivers and ensure that they retain high-performing employees for years to come.

1. Increased flexibility

In the wake of the COVID-19 pandemic, flexibility has become more of a requirement than a luxury. The ability to shift working hours and work from home could make the difference between keeping and losing A-list employees. Experts at Harvard Business School recommend that workplaces move to hybrid models, where workers have the flexibility to work from home at least a couple days per week.

The days they are in the office should be used wisely, with face-to-face conversations that build connection and camaraderie. Those authentic connections foster two-way empathy for both caregivers and employers. As a result, both become invested in the other’s well-being and success. It’s a win-win.

2. More paid time off

Many employers are reluctant to offer more paid time off due to cost. Yet, many caregivers say that PTO is more important to them than salary increases. The U.S. Equal Employment Opportunity Commission (EEOC) reports that offering this benefit, along with other flexibilities, enhances employee productivity, reduces absenteeism, lowers costs, and may positively affect profits.

Offering dedicated time off allows caregivers the peace of mind and flexibility to step away and take care of family members as needed. Then, when they go back to work, they are more focused and productive.

3. Better health benefits

Do companies’ health insurance plans offer options for families experiencing rare diseases? Do they offer coverage for experimental treatments or therapies, including those for autism? Broadening the menu of health insurance options for employees is a great way to support caregivers and their families.

In addition to offering a variety of health plans, the employer’s human resource office may know of supplemental policies and government grants that they can provide to employees, such as financial support for veterans and their caregivers, and federal relief for parents and guardians.

4. Peer support at work

We all need peer support in life, but did you know you can have peer support in the workplace? In workplace peer-support programs, people who are experiencing struggle or crisis are matched with co-workers who have similar lived experience. It’s sort of a cross between a mentorship program and a support group. Done well, these programs increase job satisfaction and prevent employees from leaving the workforce. Research suggests that supporting caregivers at work also reduces stress and increases resilience in both employees and the organization as a whole.

5. Job Shares

Job sharing programs allow two employees to share one full-time position. Typically, employees participating in job sharing programs receive a proportionate share of the salary and benefits.

Depending on the line of work, sharing a position between two capable workers can benefit both the caregiver and the employer. For those employees who don’t want to leave the workforce entirely but require more time at home, a job share is a great way to keep their career active. For employers, job shares can improve productivity, decrease turnover, and save money that would be spent on recruiting a full-time person. For some positions, the job share can also increase creativity and problem-solving, because the employees can share ideas. It also reduces burnout that may happen when one employee is overworked.

Still skeptical that these concessions can benefit employers too? In that case, the AARP offers some insight. Throughout its research, the AARP has found that organizations that implement policies and programs to support caregiving employees enjoy higher loyalty among workers, better retention of existing talent, more productivity, and even growth in company share prices.

While the pandemic has brought caregivers’ needs to the forefront and created a sense of urgency, meaningful changes in the workplace can happen anytime. Ideally, this is the beginning of an ongoing conversation between employers, staff, and communities about how to find solutions that benefit us all.


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