How to Help People with Kidney Disease Keep Their Jobs
For 16 years, with Amgen support, the non-profit Medical Education Institute (MEI) which created Home Dialysis Central, ran the Life Options Rehabilitation Program to help people with kidney disease live long and live well. A key aspect of that program—but never the only focus—was helping people to maintain employment, because work can boost self-esteem, offer social contacts, and provide an income and perhaps benefits, and all of these help mitigate the emotional and financial and even physical impact of a chronic illness.
Recently, it has been suggested that the degree to which dialysis clinics help their clients keep their jobs should be a metric used to judge the quality of the care they deliver. You would think that with a 16-year track record of advocating for employment (along with encouragement, education, exercise, and evaluation, the original “5 E’s” of renal rehabilitation) MEI would strongly support this notion. But, we don’t support it unconditionally. Because, by the time people reach end-stage and start on dialysis, it is far too late to start worrying about their jobs. That concern needs to happen upstream during CKD and then continue into ESRD.
To help the kidney community understand how difficult it can be to return to work, I asked members of our Facebook discussion group to describe the challenges. Their responses illustrate the complexities of a system that is not set up to help people stay active and productive—even though helping citizens to do just that was precisely the promise made by Senator Vance Hartke that got Medicare extended to pay for the ESRD program (dialysis and transplant) in 1972. The emphasis below in bold is mine:
- I would love to return to my job, but I can't. With my employer, once you go out on Long Term Disability, your position is gone. You have to re-apply and go in at the entry level position. They're required to take you before others that apply off the street, but it's literally like going into a new job. I'd lose my long-term disability benefits (which means no more health insurance), and I'd be without health insurance for 90 days due to the hiring process. I can't get health insurance through the exchange because I have Medicare. So even if I could find a clinic in my (insurance) network that lets you do nocturnal (which I would need to do my job), it wouldn't be worth it, as I'd be paying off my health care for the rest of my life for those 3 months.
- For my long-term disability, I have to be reviewed yearly. They check to see if I have taken any classes, or working other places, etc. It's an automatic removal of my LTD benefits - which for me, is my health insurance. Yes, I have Medicare, but it doesn't cover everything and my prescriptions are through my employer insurance.
- I am now 5 weeks out from a non-related living donor transplant. But in my experience I work for a small employer (under 40 employees) and when I started dialysis I was a supervisor. I have since been demoted twice due to a request to modify my hours so I could work from 7-3:30 so I could come home and dialyze right away and get to bed by 9. (NOTE: Not making this kind of accommodation is against the law—the Americans with Disabilities Act, or ADA). It will be interesting when I go back after this surgery. It's difficult to work at a small employer when you have a chronic illness.
- My hubby worked while on dialysis for 10 years while paying into long-term disability. If he was able to work any hours at all right now he would lose that income. He could lose it just by participating in vocational rehabilitation.
- I could not survive on my SSDI alone. If I lost my long-term disability benefits, I would be homeless!
- I searched the local voc rehab job finder database and there was only menial labor jobs listed. My fear is that dialysis centers will see employment as a revenue stream and not focus on what is best for the patient. The dialysis centers can push people to go back to work so that they would receive private insurance. Private insurance pays more than Medicare…
- Dialyzors are in a world of our own. Unlike those with permanent or development disabilities (like Downs, deformities, and the like) ours is a progressive disease, where one day we may feel great, the next in the toilet. We are subject to emergency hospitalizations and infections. It makes it very hard to consider viable employment, and then you have to fight employers who are resistant and uncooperative. It is truly easier not to work, and for those that have managed to do so, I applaud you. For those that want to, I empathize, and for those that can't. I get it!! No one should be judged by where they are in this continuum!
- I don't think my mind is quick enough or thorough enough to put the care of patients at risk.
- I think the biggest hurdle for me is getting time off work to get to monthly clinic. I mean I could never take a day off with just 2 weeks notice every month and the doctor and team are completely and totally rigid and non-flexible. So, if I did find work it would be near impossible to keep it with the necessary clinic visits. Just saying. (NOTE: The ADA could make a more flexible work schedule possible.)
Perception is reality. Systemic barriers in long-term disability coverage, in particular (not Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI)), can make the challenges of returning to work nearly insurmountable. The fear that returning to work could risk of loss of income and homelessness or enormous debt is great enough that even people who really want to work are afraid to try. Consumers may not be fully informed about disability insurance policies (public and private), work incentive programs with complex rules, vocational rehabilitation offerings, and legal protections for workers with disabilities, so myths and misperceptions may limit pursuit of employment even among those who do feel able to work. And, currently, the median age of people on dialysis in the U.S. is 60 (down from 65, as younger people become more likely to experience kidney failure). A substantial proportion of U.S. dialyzors are retired due to age, while others don’t want to work: among the general public, only about 2/3 of working-age people are employed. Any sort of metric around employment levels for dialysis patients would need to consider the appropriate denominator.
What makes more sense and has the potential to be far more effective is to support people to keep their jobs as their CKD progresses. Before kidney failure, education about slowing CKD progression is key, followed—if CKD progresses—by information about which treatment options are work-friendly. Use of home therapies and accommodating work in clinic scheduling are obvious strategies to make continued employment more likely, which is why you are reading this post on Home Dialysis Central. An abstract at this month’s NKF Spring Clinical Meetings found dismal employment rates across the board for 156,524 working-age (defined as <60 years old) DaVita patients—just 12.8%. But, the percent of those who worked more than doubled for home dialyzors on both PD (25.1%) and home HD (27.8%).1 A second DaVita abstract identified lack of energy, disability, and a need for retraining as the key barriers to employment.2 Finally, an even larger and longer term analysis by Nie, Bragg-Gresham et al. assessed employment rates by year for 402,679 working-age (21-65) patients who began standard in-center HD between 2005 and 2014. While employment rates held steady at 27-29% between 2005 and 2010, they subsequently decreased to 23% by 2014.3 If I were a gambler, I would bet that reduced hemoglobin levels played a part in that decline…
To address the distressing lack of employment among people with CKD, MEI is partnering with the American Association of Kidney Patients (AAKP) on a new initiative--KidneyWorks. Our aim is to reach out to people who have stage 3 or later CKD—but are not on dialysis or transplanted—and help connect them to the resources, employment rights, and information they need to continue working and keep their health plans.
KidneyWorks is a long-term comprehensive initiative to:
- Investigate barriers to continued employment for people with nondialysis CKD
- Identify strategies to help working age people with CKD slow the disease progression and keep their jobs
- Develop resources and programs to support people with CKD in the workforce
KidneyWorks Phase 1, a stakeholder meeting that will culminate in a white paper, will take place at the Hall of States in Washington D.C. at the end of June, with a cross-disciplinary slate of passionate experts. Outreach to people with nondialysis CKD—a perennial challenge—will be facilitated by AAKPs membership and magazine, and by Life Options, which has morphed over time from a dialysis site to a resource that mainly reaches people with nondialysis CKD and attracts more than 2.7 million unique visitors a year. If YOU are interested in contributing resources or expertise to this effort as it moves forward after the Phase 1 meeting, reach out to me or to Gary Green at AAKP and let us know. KidneyWorks is an idea whose time has come.
- Dunn D, Evans D, Mutell R, Hann C, Benner D. Employment status among end-stage renal disease patients by treatment modality. Abstract and poster presented at the National Kidney Foundation Spring Clinical Meetings, April 27-May 1, 2016, Boston, Massachusetts.↩
- Evans D, Dunn D, Mutell R, Jones E, Benner D. Barriers to employment among end-stage renal disease patients receiving dialysis. Abstract and poster presented at the National Kidney Foundation Spring Clinical Meetings, April 27-May 1, 2016, Boston, Massachusetts.↩
- Nie XY, Bragg-Gresham J, Shahinian V, Saran R. Changes in employment status during six months prior to first chronic hemodialysis (HD), 2005-2014. Abstract and poster presented at the National Kidney Foundation Spring Clinical Meetings, April 27-May 1, 2016, Boston, Massachusetts.
These abstracts and posters from the NKF meeting can be found by typing “employment” into the “text search” field at https://ww3.aievolution.com/nkf1601/index.cfm?do=abs.pubSearchOptions.↩