How to Help Home Dialysis Patients Work

Peritoneal dialysis (PD) and home hemodialysis (HD) are more work-friendly than in-center HD. Yet we have no national data on how many home patients work. We know that in 2010 only 20% of all dialysis patients ages 18 through 54 were working full or part-time for pay. [1] How many more home dialysis patients could work if they were encouraged to keep their jobs and/or informed about work incentive programs that could help them return to work—and keep their employer group health plans?

If you have working home patients here are some things you can do to help them keep their jobs :

• Train patients for home dialysis outside of work hours/days
• Schedule clinic appointments before or after their work hours
• Assure that work-limiting symptoms are identified and managed
• Provide a physician letter as requested by the patient to educate the employer about kidney disease, home dialysis, and accommodations that may be needed [2]
• Inform the patient and employer about protections under laws, including the Americans with Disabilities Act [3]
• Share with those on dialysis and their employers that Fiscus v. Wal-Mart found those on dialysis have “a physical impairment that substantially limits major life activities,” which is required to be protected by the ADA[4]
• Understand and help patients use the Family and Medical Leave when necessary, rather than taking disability [5]

Patients who receive SSI or SSDI are eligible for work incentive programs under Social Security. Those who are eligible for SSI have a disability, little or no work history, and limited income and assets. Those on SSDI have a disability and enough of a work history to qualify. Some work incentive programs are available for people with either benefit; others are only available for those who qualify for either SSI or SSDI:

• A trial work period (TWP) allows someone receiving SSDI to work at ANY level for 9 trial work months (they don’t have to be consecutive). The TWP amount in 2014 is $770. Any month that work earnings are above the threshhold will use up one month of the TWP. SSA will keep sending SSDI checks for a 3 month “grace period” after the TWP—to be sure the person can keep working.
• For 36 months after all TWP months are used up, the Social Security Administration (SSA) determines if the disabled person’s work earnings are above the substantial gainful activity (SGA) level . In 2014 the SGA earnings level is $1070 per month ($1800 for legally blind). SSA will pay SSDI for any months that work earnings fall below the SGA. This is called the extended period of entitlement (EPE).
• Impairment-related work expenses (IRWE) can be deducted from earnings, so someone can receive benefits, even while working . If a person reports impairment-related (or blind, if legally blind) work expenses to SSA in a month when they have work income, SSA can deduct these costs from countable work earnings. This allows someone to earn that much more than the SGA.
• Benefits can resume under “expedited reinstatement” if a setback with a disability keeps someone from working at the SGA level during the first 5 years of working with the disability . SSDI benefits won’t end unless work income is above the SGA or the person recovers medically.
• A work incentive program called “continued payment under Vocational Rehab (VR)” (Section 301) can keep benefits coming . SSDI payments can continue if a person who recovers medically (e.g., has a stable transplant) is working with the state VR or similar program, as long as SSA believes those services will improve the person’s chances of becoming self-sufficient.

These work incentives and many others related to SSI and SSDI can be found in the SSA Red Book.[6]

Another helpful resource is the SSA “Blue Book,” which describes genitourinary conditions in Section 6.00. This section includes information on symptoms and lab values related to kidney disease/kidney failure, as well as treatments like HD and PD that may make someone unable to work due to their medical status and eligible for SSI or SSDI.

Once SSA determines that someone is disabled, it will conduct continuing disability reviews periodically. How often depends on how likely the person is to recover medically. The process is described in the “Blue Book,” which also provides the listing of conditions that can be disabling. SSA will not review the disability status of someone who has received SSDI checks for 24 months solely because they have work income. [7] SSA may review a transplant’s disability status as soon as one year post-transplant. Patients on home dialysis who are considering transplant but not currently working may want to use the time on dialysis to prepare for living and working with a transplant.

As a community, we have a responsibility to help as many people work as can. Working can help home dialysis patients physically, emotionally, socially, and financially and can help them believe in dialyzing to live instead of living to dialyze.