Working With Kidney Disease: Rehabilitation and Employment

If you have chronic kidney disease, you may have questions about finding, keeping or changing jobs.

What does rehabilitation mean for me?

As a kidney patient, your rehabilitation involves:

  • Return to a healthier state
  • Having a more positive outlook
  • Enjoying family and friends
  • Feeling useful

At first, your kidney disease may affect our self-confidence, making it hard for you to think about getting back to activities you used to enjoy. With the help of family, friends and the health care staff, you can begin to get used to your new lifestyle.

How to improve physical strength

Improving physical strength is an important part of rehabilitation. Dialysis treatments or a transplant may improve your health. However, changes in your body caused by kidney failure and treatment may lower your energy level and endurance. Healthy kidneys make a hormone, called erythropoietin (EPO), which helps your body make red blood cells to carry oxygen around the body. When your kidneys are not working well, your body makes less EPO. This means you have fewer red blood cells. Low red blood cell count (anemia) is probably one reason why you get tired easily. A man-made form of this hormone is now used to treat anemia in kidney patients. This treatment has helped many patients feel stronger. To find out if this treatment could help you, speak to your doctor and to the other members of the health care team.

How to feel stronger emotionally

Because you have a chronic illness, you may feel afraid or discouraged when you think about the future. You may find the changes in your health hard to handle right now. You may also feel anger, guilt and depression. These feelings are normal and are part of the process of accepting your illness and treatment. You will begin to feel better about your illness and more in control of your life when you learn more about kidney disease and your treatment.

It is important for you to know that depression can be treated. The first step is to change negative self-talk ("I'm never going to feel better") to positive self-talk ("I'm getting a little better every day"). Even this can help if repeated several times a day. Talk about your feelings with your family, with friends and with members of your health care team. Your social worker is trained to help you with emotional concerns. He or she can provide counseling or help you and your family find community agencies that offer individual, family or group counseling. Your local National Kidney Foundation Affiliate can also provide information, understanding and support.

Is a leave of absence necessary?

Many people who start on dialysis are able to return to work after a short time off. For those having a transplant, the time off may be longer. Many kidney patients look forward to returning to work as soon as possible. For these people, returning to work and its routine helps them feel more normal. For others, thinking of returning to work may seem too much now. Talk to your doctor about when you should be able to return to work. Talk to your employer about your job and any changes that may be needed for you to return to work, such as flexible work hours and days. If you have a heavy job, you may want to talk about changing to a lighter job. If you do continuous ambulatory peritoneal dialysis (CAPD), you may need to talk about a place at work to do an exchange. Only you can decide when is the best time for you to return to work.

Are there community resources to help me find a job?

There are public and private agencies to help people find jobs. Some of these agencies can help you decide what you want to do, write a resume and practice interviewing so you feel more confident. Agencies you may have heard of are:

  • City and State Personnel Departments/Job Service Centers
  • Federal Job Information Centers Veterans Action Centers
  • YMCA job banks
  • Job Corps
  • Employment agencies
  • Local or Regional Offices of Vocational Rehabilitation (Rehabilitation Services Administration)
  • State Client Assistance Program

Your social worker can help you with information about these agencies. Many National Kidney Foundation Affiliates have listings of local rehabilitation agencies. Rehabilitation can also include going back to school. Guidance counselors at local schools or colleges can help you. Some agencies may help pay for training.

How to prepare for job hunting

You may want to prepare a resume which is a record of your education and work history. It includes:

  • your name, address and telephone number
  • a summary of your work experience (paid and volunteer)
  • your education
  • special skills that may help you qualify for the job

You may want to include names of persons who know you and would recommend you for the job.

How to handle job interviews

During the job interview, talk about what you do well. Do not be afraid to include any skills you learned doing volunteer work. Ask questions about the company and the job. You will look good to employers if you show you are interested and want to learn.

Talking to employers about your illness and treatment

During the interview, you do not need to tell a potential employer about any illness if it will not interfere with your ability to do the job for which you are applying. Many employed patients have suggested that you should discuss any special needs you might have with the employer after you settle other details of the job. Your employer cannot make changes in the job or the workplace for you if you have not asked for help.

Potential employers may know very little about kidney disease and how it affects your ability to work. They may be concerned about how much work you can do and how much time off you will need. They may also be concerned about how much it will cost the company to provide health benefits to you. You may want to ask your doctor or health care staff to talk with your employer. A little information about your illness, abilities and limits can do a lot to ease concerns.

You may want to discuss the following:

  • Can the work schedule be changed to allow for dialysis treatments or doctor's appointments? Will you be able to make up time off for dialysis? Can your dialysis schedule be changed to accommodate work hours?
  • What are the physical demands of the job and any limitations you might have?
  • What information does the company medical staff need in case of an emergency?
  • Can you have the company's health insurance and will it cover ESRD care?

Employers may not know that tax credits may be available to companies that hire someone who is certified as medically handicapped by the State Employment Office. (The government considers kidney failure a "handicap.") Also, they may not know about tax credits they can get for making workplace changes.

Are there laws to protect against job discrimination?

According to the Rehabilitation Act of 1973 and 1993, people with kidney failure cannot be turned down for a job or promotion or be fired because of their disability if they can do the assigned job. The Americans With Disabilities Act (ADA) now applies to public and private employers with 15 or more employees. The Act requires employers to make reasonable accommodations" to help the disabled. This includes making parking, bathrooms, and work areas accessible to the handicapped; having flexible work schedules; reassigning employees to less strenuous positions if available and assigning non-essential tasks to another employee.

Under the Family and Medical Leave Act (FMLA), if a person with kidney failure is temporarily unable to perform any essential job functions as defined by the ADA, he or she may be eligible to take FMLA leave. Up to 12 weeks can be taken at once or in increments as small as 15 minutes during a given 12 month period. The employer has to maintain group health coverage and can't use the leave to negatively impact the employee's benefits. After the leave, the employer must reinstate the employee to the same or equivalent position with the same pay, benefits, and working conditions. If an employee needs to provide care or transportation for a spouse, child, or parent, he or she is eligible for FMLA leave. The employer can require certification by a health care provider of the health condition or the care needed. To qualify under the FMLA, the employee must work for a public agency, public or private school, or company with 50 or more employees who live within 50 miles of their workplace. The Department of Labor is charged with reviewing FMLA complaints.

Do you have to take a physical exam?

The Americans With Disabilities Act states that your employer may not ask you to take a physical exam until after a job offer has been made unless all other applicants for that job are required to take a physical. You can be tested for drugs, however. If the job offer is taken back after you have taken a physical exam, the company must prove that you cannot do the "essential functions" of the job. For more information on the Americans With Disabilities Act, talk with your social worker or contact your local National Kidney Foundation.

Are you entitled to company health insurance?

If the company offers benefits including health insurance, you can only be denied health insurance if the company's policy does not cover chronic kidney failure and its treatment or if employees in similar jobs are not offered health insurance benefits. You may have to go through a waiting period for pre-existing conditions if others with pre-existing conditions must also wait. By law, a group health plan is a primary payer for the first 18 months after Medicare entitlement. The state insurance commissioner's office can tell you more about the laws that apply to group health insurance companies in your state.

Help is available for those who have been discriminated against

If you feel you have experienced discrimination at work because of kidney disease, there are several places you can go for help. Equal Employment Opportunity Commission staff suggest that you start locally. If you are employed, file a grievance through your company's grievance channels. Local unions can be helpful if you are a union member. If these options are not available, your city's Human Rights Department may be able to help. On the state or federal level, you can contact the Human Rights Commission, the Department of Labor or the Equal Opportunity Commission. You can find their phone numbers in the telephone book. Your social worker or your National Kidney Foundation Affiliate can also help you.

Where to go for financial help

Unless you have other income, if you can't work you will probably need financial help. Many kidney patients face temporary or permanent loss of earned income sometime. Fortunately you may be able to get help. Your social worker can help by giving you information about services and who qualifies for them. Some of the programs that may help include:

Social Security Disability Insurance (SSDI) can pay monthly benefits. It is administered by Social Security for those who have a disability that is expected to last at least a year. An application is required and there is a five month waiting period. Benefits are paid based on your earnings under Social Security, not your family's income or savings (resources).

Supplemental Security Income (SSI) can pay monthly benefits. It is administered by Social Security for those who have little or no Social Security work history and who have a disability that is expected to last at least a year. An application is required which can take up to 45 days to process. Benefits are based on your family's income and savings (resources).

Individual state assistance programs include general assistance, aid to families with dependent children, food stamps, etc. These programs can provide monthly financial assistance to those with low incomes. It may take time to see if you qualify. Benefits are based on income and savings.

Medicaid can provide financial help with expenses for health care, many medicines and, in some states, transportation. It is run by the state welfare department. It takes time to process your application. Benefits are based on income and savings.

Some states have kidney programs that provide benefits. Each program is different and may include: coverage for treatment, medicine and transportation assistance. Benefits may be based on income and savings.

Department of Veterans Affairs benefits may provide shopping privileges, a monthly pension or coverage for health care, care at home, or care in a nursing home. Military service is required. For some benefits, service must have been during wartime. For others, you must have a service-connected disability.

Bureau of Indian Affairs provides coverage for health care and financial help for American Indians living on reservations.

Vocational Rehabilitation can provide evaluation, training, counseling, job placement services and some financial benefits to physically or mentally disabled people. It is run by state departments of Vocational Rehabilitation. It may take several months to see if you qualify, develop a plan, get needed training and help you get a job. Benefits are not based on income or savings.

Community service agencies and charitable organizations, including some National Kidney Foundation Affiliates, can provide temporary financial help with food, housing, medicines, etc., to low income persons in need. Some National Kidney Foundation Affiliates also provide job training programs. Talk to your social worker about these programs. You may need to be referred by your social worker.

Programs that help kidney patients get back to work

There are programs that help patients move slowly toward independence in the workplace. These are called work incentive programs. Both Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) offer work incentive programs. An example of a work incentive program offered under SSDI is the trial work period. This allows you to receive full disability payments for nine months (not necessarily one right after another) no matter how much you earn from working. Work income less than $200 a month does not count against the trial work period. An example of a work incentives program offered under SSI is the Plan for Achieving Self-Support (PASS). This allows you to write a plan to go to school, set up a business or even buy a car to help you become self-supporting. Money for these expenses can be set aside without reducing SSI income for a period of up to 48 months. For more information about these and other Social Security work incentive programs, talk to your social worker or to your local Social Security Office.

Why look for work if you can get disability benefits?

Work and being independent are strong values for Americans. Many people base the way they think of themselves on their ability to work and the job they do. Returning to work when possible can help you to feel better about yourself. Working can help you to have a more positive outlook and give you the chance to be with others. If you are not able to work, it is important to find something that you enjoy and do it. Volunteering for your church, a school, a hospital, or an agency is another way to feel worthwhile besides work.

If you would like more information, please contact us.

© 2014 National Kidney Foundation. All rights reserved. This material does not constitute medical advice. It is intended for informational purposes only. Please consult a physician for specific treatment recommendations.