How to Help Your Working Home Dialyzors Keep Working

Do you work with home dialyzers who work? Are any of them considering applying for disability? Here’s some information that you (and they) might want to know.

Why Encourage Work?

Besides helping dialyzors maintain a more “normal” lifestyle, work:

• Provides income to pay for routine expenses and fun activities
• Affords greater access to employer-sponsored insurance (health, life, disability)
• Uses physical and/or mental capabilities, which helps to maintain them
• Expands the dialyzor’s sense of self-confidence and self-worth
• Improves access to transplantation, according to research
• Benefits the employer, the community, the economy, and society as a whole.

Work-Limiting Symptoms/Problems

It’s not uncommon for dialyzors—even those at home—to have work-limiting symptoms and to feel like kidney disease and dialysis are so burdensome that maintaining employment is too hard. How do you know if your patients are feeling this way and what do you do about it if you do?

The Kidney Disease Quality of Life (KDQOL-36) survey can help your team identify how much home dialyzors feel their physical and/or mental health limits their activities, how burdensome they feel their kidney disease is, how bothered they are by common kidney-related symptoms, and how much kidney disease affects several key areas of life. Once your team knows these limitations, your team can target individual or facility-wide efforts to address those areas, with the goal of helping each home dialyzor live as productively as s/he desires.

Americans with Disabilities Act (ADA)

Employers with 15 or more employees must comply with the ADA, which prohibits discriminations against the disabled in all employment practices, including job application procedures, hiring, firing, advancement, compensation, training, and other terms, conditions, and privileges of employment. The ADA applies to recruitment, advertising, tenure, layoff, leave, fringe benefits, and all other employment-related activities. People with kidney failure have a disability protected by under the ADA—in fact, a legal case (Fiscus v. Wal-Mart) set that precedent.

The employee or potential employee with a disability must be able to perform the essential functions of the job with or without accommodation. Some with a disability may not want or need accommodation; others may. A requested accommodation for someone on dialysis could include a flexible scheduling (if it won’t disrupt the business operations), doing some or all work remotely, having a longer break to do a CAPD exchange, being able to sit rather than stand to do a job, and being able to transfer to a less strenuous job.

Family & Medical Leave Act (FMLA)

A dialyzor (or his/her spouse, parent, or child) who has worked for a covered employer for at least 1,250 hours during the past 12 months can use the FMLA to take unpaid, job-protected leave for certain family and medical reasons. Covered employers include local, State, Federal agency or school or those who work for a private sector employer that has 50 or more employees during 20 or more workweeks in the current or preceding calendar year. Except in emergencies, employees must notify employers and request FMLA, and employers have 5 days to certify leave.

Employees can use paid vacation or sick leave for all or part of their time off under FMLA. Taking FMLA continues group health insurance coverage with the same terms and conditions as for any employee. The FMLA protects the employee’s rights to raises and promotions. Employees can take the leave all at once or intermittently over months, weeks, days, hours, and sometimes even less than an hour. Employers must let leave be taken in increments as small as its personnel accounting allows, up to an hour. Employees should make efforts to schedule medical appointments to not disrupt business operations if possible. However, if that’s not possible, an employer may shift the employee temporarily into another position that allows intermittent time off but pays the same with the same benefits.

Disability Payments

Disability insurance was not set up to replace all of a worker’s earnings, because that might be an incentive to not work at all. Most private disability policies replace only a maximum of 60% of earned income from work. What Social Security Disability Insurance (SSDI) replaces depends on how much the worker earned on average during their lifetime. The National Academy of Social Insurance reported how much of a worker’s earned income was replaced by SSDI. Lower wage earners had the highest percentage of income replaced, while those earning more had a lower percentage of income replaced.

*Average indexed earnings

In 2015, the average SSDI recipient was on track to receive a little less than $14,000 that year. Spouses and/or children of disabled workers may be eligible to receive family benefits. However, family benefits are limited.

Dialyzors who have not worked long enough and had enough Social Security taxes withheld to qualify for SSDI may be eligible for Supplemental Security Income (SSI). SSI eligibility is based on income and assets as well as having a disability. In 2015, the Federal SSI payment was $733 for an eligible individual. If both spouses are disabled, the couple’s SSI would be $1,100 in 2015. Some states supplement Federal SSI benefits.

Those who qualify for SSI also qualify for Medicaid. In some states, Medicaid is automatic for those getting SSI; in other states SSI recipients have to apply for Medicaid.

People who have a disability but are willing and able to work can learn a lot about work incentive programs. The Social Security Red Book describes multiple work incentive programs that help SSDI or SSI recipients work.

Continuation of Health Insurance under COBRA

The Consolidated Omnibus Budget Reconciliation Act (COBRA) requires employers with 20 or more employees in the prior year to offer continued health insurance benefits to employees and dependents when certain changes occur:

• Voluntary or involuntary termination of the covered employee’s employment for reasons other than gross misconduct
• Reduced hours of work for the covered employee
• Covered employee becoming entitled to Medicare (entitled = enrolled in)
• Divorce or legal separation of a covered employee
• Death of a covered employee
• Loss of status as a dependent child under plan rules

Coverage for the employee lasts 18 months and can be extended another 11 months if the employee is disabled. A spouse or dependent child can have 36 months of COBRA coverage. Premiums for COBRA coverage may be 102% of the full premium (employee and employer share) and may be even higher for the 11-month extension.

NOTE: The law does not require an employer to terminate COBRA coverage if an employee who is eligible for Medicare enrolls in it, but employers may do this, so dialyzors who rely on COBRA coverage need to be aware of this risk.

What You Can Do

Research has shown that patients are vulnerable to accepting myths and others’ expectations as fact. Dialyzors who believed they could work and the doctor, staff, and family supported that belief, continued to work, in a study conducted by Medical Education Institute. However, in that study when dialyzors did not believe that those on dialysis could work, or their continuing to work was not supported by their family or dialysis team, they didn’t work.

Dialyzors may be afraid of failure or fear that working will worsen their health. Trying to live on disability and having to pay for health care—even with Medicare or other insurance—can be anxiety-provoking and depressing. Multiple studies have reported that anxiety and/or depression are associated with poorer outcomes, including mortality, hospitalization, missed treatments, etc. Do your patients and your dialysis clinic a favor and help your patients by showing your support and educating them about the benefits of working, their rights in the workplace, and resources that can help them keep their jobs.