Effective Strategies for
Improving Employment
Outcomes for People with
Chronic Kidney Disease
27th Institute on
Rehabilitation Issues
The contents of this IRI document were developed under a grant (H264A30008)
from the Rehabilitation Services Administration of the Department of Education,
Office of Special Education and Rehabilitation Services. The materials in this
publication do not necessarily represent the official views of these agencies and you
should not assume endorsement by the Federal Government. They do, however,
reflect an attempt by the authors to explore a significant aspect of their programs
in order to encourage evaluation and stimulate professional growth.
Table of Contents 3
Prime Study Group Members 10
Acknowledgements 14
Introduction 15
Chapter 1: What Is Kidney Disease and Its Treatment? 19
What are the functions of the kidneys?..........................................20
What are some of the symptoms of
chronic kidney disease (CKD)? ......................................................20
Are there other symptoms of CKD? ..............................................20
What are common causes of kidney failure?..................................21
Is it possible for someone to have CKD and not know it?............22
Are there stages of CKD? ...............................................................22
What is the treatment for CKD? ...................................................22
What is dialysis? ...............................................................................23
What is hemodialysis?.....................................................................23
What is peritoneal dialysis? ............................................................25
What will help people on dialysis feel their best?..........................26
What is transplantation? .................................................................26
Can anyone get a kidney transplant?..............................................27
Where is the transplanted kidney placed?......................................28
Are there complications after transplant? ......................................28
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Table of Contents
How long does it take to recover after transplant surgery? ..........28
Will someone appear any different after a transplant? ..................28
What medications might someone with CKD take and do
they have any side effects? ..............................................................29
What innovations in the treatment of kidney disease enhance
the employment potential of people with CKD? ..........................29
Who is available in the clinic to assist patients? ............................30
What can VR counselors do to learn more about the person
and the disability?............................................................................30
Living With CKD: A Client’s Perspective (Case Study) ...............31
Chapter 2: Referral 33
Can the applicant with kidney failure work?..................................34
What are the most likely sources of referral for those with
chronic kidney disease (CKD)? ......................................................34
How can VR counselors access appropriate referrals of those with
kidney disease in areas with many providers? ................................35
Who is the mostly likely source of VR referrals from dialysis
and transplant facilities?..................................................................35
Where can VR counselors find the most up-to-date medical
information on an applicant with CKD?........................................36
Who can provide information about the applicant’s financial
resources and insurance coverage? .................................................36
How stable is the applicant’s condition?.........................................37
What are the emotional and/or psychological effects
of dialysis?........................................................................................37
How will the applicant who is just starting dialysis appear
during an intake interview?.............................................................37
Do applicants with kidney failure need to make any lifestyle
changes?...........................................................................................38
How important is it that applicants follow diet and fluid
prescriptions?...................................................................................38
Where does the applicant with kidney failure do dialysis?............38
What is the applicant’s dialysis schedule and how long do
treatments last?................................................................................39
How flexible can the dialysis schedule be?.....................................39
How might the applicant with chronic kidney failure feel
before and after dialysis?.................................................................40
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Twenty-Seventh Institute on Rehabilitation Issues
How might kidney disease affect the applicant’s stamina? ............40
How does the applicant think working might affect
his/her health? .................................................................................40
How does being on dialysis (or having a transplant) affect an
applicant’s ability to work? ..............................................................41
Does the applicant have any sensory limitations?..........................41
What kinds of working conditions might the applicant
need to avoid?..................................................................................41
Might the dialysis access sites pose any work limitations? ............42
What kind of limitations in lifting, bending, reaching,
prolonged standing, walking, stooping, or kneeling might
applicants on dialysis have?.............................................................42
Is a kidney transplant a possibility for this applicant? ...................43
Is the applicant on a transplant list and does
he/she have a pager?........................................................................43
Does the applicant anticipate being hospitalized for
a transplant soon?............................................................................44
Might applicants with kidney transplants have any limitations? ...45
How often does the applicant have medical appointments?..........45
How important to a successful vocational outcome is a
support system for applicants with kidney failure? ........................45
The Dialysis Social Worker As A Referral Resource
(Case Study).....................................................................................47
Chapter 3: Vocational Service, Planning, & Delivery 49
What are the client’s vocational goals?...........................................50
If the client is working now, what might he need from VR to
help him/her keep the current job? ................................................50
Is the client looking for immediate work or a career?...................50
Does the client want to work full or part-time? ............................51
Is full-time work an option? ...........................................................51
What work hours are best for the client – before or after
dialysis? ............................................................................................51
Is it possible to schedule dialysis around work or does a job need
to have a flexible work schedule for a client who is on dialysis? ...52
Would work adjustment training be an option if the client
has not worked in a long time, never worked, or has a sporadic
work history? ...................................................................................52
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Table of Contents
How much money does the client with kidney failure want
or need to earn?...............................................................................52
How do clients with CKD pay for treatment?...............................53
Does the client need to have company health insurance and
sick leave? ........................................................................................53
What other sources of help are available for a client’s
medical costs if the job does not offer health insurance? ..............54
Will a client’s Social Security disability benefits be affected
if he or she receives help from VR? ...............................................54
How might work incentives benefit clients with kidney failure?....54
If the client needs to do a CAPD exchange during work hours
what kind of accommodation might he/she need? ........................56
Can applicants choose another type of dialysis if this would
help them achieve their vocational goals? ......................................57
Can applicants choose a different time of day for dialysis if this
would help them achieve their vocational goals? ...........................57
Can clients transfer to other dialysis facilities, such as one
with an evening dialysis shift if this would help them achieve
their vocational goals?.....................................................................57
What if the client receives a transplant during delivery
of services?.......................................................................................58
Can a client change his/her schedule for vocational evaluation
or training program? .......................................................................58
Who are the key contact people in the dialysis or transplant
facility that can address questions specific to providing optimal
vocational services?..........................................................................58
The Client With CKD And Blindness (Case Study).....................60
The Client With CKD And English As A Second Language:
A Client’s Perspective (Case Study)................................................62
Chapter 4: Job Development, Job Placement, Job Retention 65
What medical benefits do clients on dialysis retain once
they start work? ...............................................................................66
What medical benefits do clients with a transplant retain
once they start work? ......................................................................66
What can a VR counselor do to help those with kidney disease
who still have disability or health benefits through a former
employer? ........................................................................................67
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Twenty-Seventh Institute on Rehabilitation Issues
How much does a client need to disclose about chronic kidney
disease (CKD) to a potential or current employer or supervisor?...67
How can the VR counselor encourage job retention for people
with CKD? ......................................................................................68
Who can provide detailed information regarding whether
a position is within the client’s functional abilities?.......................69
What kinds of jobs should a client with CKD avoid? ...................69
What kinds of environmental conditions should someone
with CKD avoid?.............................................................................69
Can someone with CKD work a 40-hour week? ...........................70
Can someone with CKD work an 8-hour day? .............................70
Can someone with CKD work overtime?......................................70
Can people with CKD travel as a function of their job?...............71
What happens if work interferes with treatments?........................71
What needs to be taken into consideration when setting
up a job interview? ..........................................................................72
Who can assist in identifying and implementing job
accommodations? ............................................................................72
How can the VR counselor enhance the dialysis client’s
chances of being successful in those critical first few weeks
on a new job?...................................................................................73
What natural helpers can VR counselors use with people with
kidney disease?.................................................................................73
Can employer based training programs be an effective
placement tool? ...............................................................................73
What transportation services can dialysis clients use to
get to and from work?.....................................................................74
Negotiating A Dialysis Accommodation (Case Study) ..................75
The Client With CKD And Hearing Loss: A Client’s
Perspective (Case Study).................................................................76
Chapter 5: Where Can I Go For More Help? 79
Where might I go to get a more general understanding of
kidney disease and how it affects rehabilitation outcomes?...........80
Who can VR specialists turn to for help in providing
meaningful services to people with CKD?.....................................80
How can family and friends help promote vocational
rehabilitation for clients with CKD?..............................................81
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Table of Contents
How can dialysis and transplant facilities help?.............................81
What if the client believes his or her facility is not doing what
it should for his/her health or vocational rehabilitation? ..............82
What other federal and state governmental agencies can help
those with CKD?.............................................................................83
Are there any programs that specifically address the vocational
needs of this population? ................................................................83
What federal laws protect people with disabilities, including
clients with kidney failure? .............................................................84
What health coverage is available for kidney-related treatment?....86
Where else can I turn to find out more about kidney disease,
its treatment, and employment prospects?.....................................87
Negotiating A Job Accommodation For A Client On
Hemodialysis (Case Study) .............................................................88
Negotiating A Hemodialysis Shift Accommodation For Work
(Case Study).....................................................................................89
Advocating Coverage For Home Dialysis To Maintain
Employment (Case Study) ..............................................................90
Directory Of Resources For People With Kidney Disease 91
Toolkit 107
Kidney Diseases Dictionary..........................................................108
When Is Medicare Primary Or Secondary Payer........................123
What Medicare Covers For Dialysis And Transplantation .........124
Rehabilitation Timeline For Dialysis Professionals.....................125
Rehabilitation Flow Chart For Dialysis Professionals.................126
Flow Chart: Currently Working Clients.....................................127
Flow Chart: Non-Working Clients With Recent Work
Histories or Transferable Skills ....................................................128
Flow Chart: Non-Working Clients Who Need More
Structured and Supportive Rehabilitation Planning....................129
What is RISE?...............................................................................130
Club Independence (Georgia only) ..............................................133
Springboard (Georgia only)..........................................................134
A Report Of The Surgeon General: Physical Activity and
Health For Persons With Disabilities ..........................................135
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Twenty-Seventh Institute on Rehabilitation Issues
9
P Charles La Rosa, Jr., MEd, IRI Chairperson
Commissioner
South Carolina Vocational Rehabilitation Department
P.O. Box 15, 1410 Boston Ave.
West Columbia, SC 29171-0015
Tel: (803) 896-6504
Fax: (803) 896-6529
E-mail: clarosa@scvrd.state.sc.us
Norma Andres, MA
Rehabilitation Counselor
Michigan Department of Career Development, Rehabilitation Services
1641 Porter Street
Detroit, MI 48216
Tel: (313) 496-8590
Fax: (313) 964-4888
E-mail: andresn@state.mi.us
Jo Constance Bond, LPC
Supervisory Rehabilitation Specialist
Rehabilitation Services Administration
810 First Street, NE #9025
Washington, DC 20002
Tel: (202) 442-8598
Fax: (202) 442-8720
E-mail: jcbond@rsa.dcgov.org
Mary Beth Callahan, ACSW, LMSW-ACP
Nephrology Social Worker
Dallas Transplant Institute
3604 Live Oak #100
Dallas, TX 75204
10
Prime Study Group Members
Tel: (214) 358-2300 Ext. 6290
Fax: (214) 366-6330
E-mail: callahanm@dneph.com
Suzannah Erhart
Rehabilitation Services Administration
U.S. Department of Education
10220 North Executive Hills Blvd., Suite 500
Kansas City, MO 64153-1367
Tel: (816) 880-4107
Fax: (816) 891-0807
E-mail: Suzannah_erhart@ed.gov
Peter Howell, MEd, MPA
Assistant Commissioner
South Carolina Vocational Rehabilitation Department
P.O. Box 14675
Greenville, SC 29610
Tel: (864) 295-5440
Fax: (864) 295-5444
E-mail: phowell@scvrd.state.sc.us
Ruth Kaluski, MS, CRC, CCM
Clinical Coordinator
ICD - International Center for the Disabled
340 East 24th Street
New York, NY 10010
Tel: (212) 585-6072
Fax: (212) 585-6161
E-mail: kaluski@aol.com
Jeanne Miller, MRC, University IRI Coordinator
Director
University of Arkansas, Region VI RCEP
P.O. Box 1358
Hot Springs, AR 71902
Tel: (501) 623-7700
Fax: (501) 624-6250
E-mail: jmiller@rcep6.org
11
Prime Study Group Members
Mario Passero, MsEd
Regional Marketing Coordinator
New York State Education Department
Office of Vocational & Educational Services
One Commerce Plaza, Suite 1601
Albany, NY 12234-0001
Tel: (518) 473-4824
Fax: (518) 473-6073
E-mail: mpassero@mail.nysed.gov
Jan Rickman
Administrative Assistant
University of Arkansas, Region VI RCEP
P.O. Box 1358
Hot Springs, AR 71902
Tel: (501) 623-7700
Fax: (501) 624-6250
E-mail: jrickman@rcep6.org
Ivette Rivera-Ortiz, RN
Health Education Supervisor
Texas Commission for the Blind
Criss Cole Rehabilitation Center
4800 North Lamar Blvd.
Austin, TX 78756
Tel: (512) 337-0364
Fax: (512) 377-0432
E-mail: IvetteR@tcb.state.tx.us
Robert Stensrud, EdD, CRC
Associate Professor
Drake University
School of Education
3206 University Avenue
Des Moines, IA 50311
Tel: (515) 271-3061
Fax: (515) 271-4848
E-mail: robert.stensrud@drake.edu
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Twenty-Seventh Institute on Rehabilitation Issues
Michael Welch, MA
Rehabilitation Counselor, Blind Rehabilitation Teacher
Commission for the Blind
305 Ludington, 1st Floor
Escanaba, MI 49829
Tel: (906) 786-8602
Fax: (906) 786-4638
E-mail: welchm2@michigan.gov
Elizabeth Witten, MSW, ACSW, LSCSW
Witten and Associates, LLC
8318 Connell
Overland Park, KS 66212
Tel: (913) 642-0269
Fax: (913) 341-5248
E-mail: beth@wittenllc.com
13
Prime Study Group Members
We would like to provide special acknowledgement to Derrick Latos, MD, FACP
of Nephrology Associates Inc. in Wheeling, WV. Dr. Latos, a former president
of the Renal Physicians Association and chair of the Life Options Rehabilitation
Advisory Council, who provided a thorough review and excellent suggestions for
Chapter 1: What Is Kidney Disease and Its Treatment? Dr. Latos’ contact
information is:
Derrick Latos, MD, FACP
500 Medical Park, Ste 200
Wheeling, WV 26003-0715
Tel: (304) 242-7751
Fax: (304) 242-7254
E-mail: dlatos@hgo.net
We also acknowledge the leadership and support of Beth Witten, whose
participation on this project was above and beyond the expectations of all
members of the IRI Prime Study Group. Many thanks for a job well done.
14
Acknowledgements
This country has many more people with vocationally limiting disabilities
than Vocational Rehabilitation (VR) programs can effectively serve! When 75%
of those with significant disabilities are unemployed, what then do VR programs
look for in selecting and promoting client referral sources?
The answer is virtually the same for all VR programs. Resources are
scarce, so agencies want referral sources that yield clients that are significantly
disabled with wants and needs consistent with the VR mission of placing people
with disabilities in competitive employment. It is all the better for the VR agency
if these potential clients have positive, rehabilitation-affirming support systems
working on their behalf.
If that’s what the VR agency wants, then what does the VR counselor
want in a referral? VR counselors want referrals of available, motivated people
who want to work and have well developed support systems in place. VR
counselors want their referrals to be stable medically and emotionally and they
want other service providers involved early and often.
What if there was a referral population available to VR agencies
nationwide that met all these requirements? Even better, what if this referral
source was largely an untapped resource for VR programs?
Well, there is such a referral population — people with chronic kidney
disease (CKD). More than 300,000 people with CKD live in the United States
and incredibly few of them receive VR services. These potential clients can be
easily accessed through dialysis and transplant facilities in every state. Another
potential referral source is the nephrologist’s office.
The vast majority of these potential referrals receive SSI and/or SSDI
benefits because Social Security considers anyone with kidney failure to have a
presumptive disability qualification. Additionally, even people with kidney
failure who have not yet qualified for SSI or SSDI benefits still qualify for
Medicare, making this the only disability group that does so. Therefore, they
would pose little or no medical expense to VR.
Someone with CKD has a built-in support system in his or her medical
treatment team. This team can offer tremendous support of rehabilitation efforts
and includes a social worker as the principal contact for the VR counselor. A
social worker can speed up and enhance the provision of VR services by providing
medical information and reinforcement for VR service delivery and follow-up. In
15
Introduction
other words, the social worker can be a true partner.
The all-important support system for someone with CKD includes not
only the healthcare team and family but also advocacy groups such as the
American Association of Kidney Patients (AAKP), the End-Stage Renal Disease
Networks (Networks), the Life Options Rehabilitation Program, National
Kidney Foundation (NKF), and the Renal Physicians Association (RPA). These
groups are genuinely committed to rehabilitation for people with CKD, and they
have developed effective strategies and abundant educational materials — all to
promote rehabilitation. Read more about these organizations in the Directory of
Resources and see examples of programs in the Toolkit, some of which are
national and others could serve as model programs.
Of the 368,662 clients served and closed by VR in FY 1999, 1,249 (0.3%)
were diagnosed with kidney failure, the last stage of CKD. Of the clients with
kidney failure served by VR and closed, 45% were closed with an employment
outcome. These clients with kidney failure came from a variety of referral
sources.
Who Referred Successfully Rehabilitated People with Kidney Failure FY 1995
Source of Data: Rehabilitation Services Administration
So, with all that people with CKD have going for them, why aren’t they
more popular with VR? Over the years many myths have proliferated about those
with CKD. Unfortunately, believing these myths has kept the rehabilitation and
renal communities apart. These myths are so strongly held that people with CKD
have accepted them as fact.
16
Twenty-Seventh Institute on Rehabilitation Issues
State Employment
State VR
Rehabilitation Facility
Welfare
SSA
College/School
Physician
Other Org.
Other Health Org.
Other Individual
Hospital
Self
0% 5% 10% 15% 20% 25% 30% 35%
Myths range from “dialysis clients are too sick and unstable to work and
will die soon” to “they are expensive cases” to “dialysis interferes with a normal
work schedule or even VR counseling appointments” or “people with CKD who
are working or have had a transplant don’t need and aren’t eligible for VR
services.” The term used in the federal legislation that entitles people to Medicare
based on kidney failure — End Stage Renal Disease — helps to proliferate the
myth that anyone who has kidney failure will die soon. Although without
treatment kidney failure is terminal, people on dialysis or successful transplants
are still living after more than 30 years.
The facts are that people with CKD generally cost less to rehabilitate and
return to work at a higher pay rate than other significantly disabled populations
served by VR. Advances in treatment and a genuine emphasis in quality of care
on the part of the renal community are generating employment-ready referrals in
large numbers. A growing number are willing and able to work. People with
CKD who worked before dialysis or transplant and later receive VR services are
much more likely to remain employed after dialysis and/or a transplant.
Vocational Rehabilitation Closures FY 1999
Successful Rehabs ESRD Other Major Disabilities
Weekly earnings at application $14.57 $39.73
Weekly earnings at closure $269.53 $251.93
Average cost to rehab $2,358.02 $2,989.80
Source of Data: Rehabilitation Services Administration
There you have it. You’ve made a new discovery. You’ve learned the truth.
If you’re ready, all you need now are the “how to’s,” and this publication will be
your guide.
17
Introduction
18
So why wait?
19 1 Chapter One
What is Kidney Disease and
Its Treatment?
What are the functions of the kidneys?
The kidneys have many functions. They:
• Adjust the body’s fluids
• Balance the body’s blood chemistry and electrolytes
• Remove waste products from the body
• Release several hormones
What are some of the symptoms of chronic kidney disease (CKD)?
Different people have different symptoms and different abilities to cope
with them. Usually the first sign of CKD is a general feeling of tiredness. Other
major warning signs may include:
• A change in the frequency or pattern of urination
• Burning during urination
• Bloody or coffee-colored urine
• Swelling of the face, feet or abdomen
• Lower back pain
• High blood pressure
Are there other symptoms of CKD?
Yes, other symptoms of CKD are:
• Inability to concentrate
• Dizziness
• Changes in sleep patterns
• Restless legs
• Generalized itching
• Decreased appetite, nausea, vomiting
20
Chapter One
What is Kidney Disease and
Its Treatment?
• A metallic taste in the mouth
• Weight loss
• Numbness in arms and legs
• Feeling of coldness
• Burning sensation in the feet
• Headache
What are common causes of kidney failure?
Chronic kidney failure occurs from the destruction of normal kidney tissues
over a long time. In the US, the most common cause of kidney disease is diabetes,
which is especially common among those who are African-American, Hispanic,
Asian, or Native American. People with diabetes and kidney failure often have
other complications related to diabetes, including retinopathy and neuropathy.
Hypertension is the second most common cause of kidney failure in the general
population, but is the leading cause for those who are African-American. Other
causes of chronic kidney failure include glomerulonephritis, recurrent urinary
tract infections, polycystic kidney disease, kidney stones, and many others. Acute
kidney failure may result from trauma, surgical complications, severe bleeding, and
toxicity due to medications. Fortunately, most people will recover from acute
kidney failure, whereas, those with chronic kidney failure will inevitably require
some type of dialysis therapy or kidney transplantation.
Causes of Kidney Failure 1998
Source of Data: USRDS 2000 Annual Report
21
Chapter 1
Diabetes
Hypertension
Glomerulonephritis
Missing
Other
Unknown
Cystic Disease
0% 5% 10% 15% 20% 25% 30% 35%
32%
20%
18%
11%
8%
6%
5%
Is it possible for someone to have CKD and not know it?
CKD may be present for several years without causing any obvious
symptoms or problems. However, when kidney function falls below 25-30% of
normal, a variety of symptoms may develop, as described above. The presence of
CKD might be suspected by a history of past medical problems, a family history
of kidney problems, by physical examination, and/or lab results.
Are there stages of CKD?
In simple terms, stages of kidney disease progress from being at increased
risk of developing kidney disease, to increasing levels of kidney damage, to kidney
failure. The precise stage of CKD is determined by measuring someone’s kidney
function through laboratory assessment and his or her symptoms.
What is the treatment for CKD?
As kidney function decreases, special attention must be paid to controlling
blood pressure, avoiding medications that can worsen kidney disease, and for
diabetics, strict blood glucose control. Occasionally, dietary modifications may be
advised. Recently, it has become evident that the use of certain medications, such
as ACE inhibitors (angiotensin-converting enzyme) or ARBs (angiotensin
receptor blockers) may slow the rate of progression of kidney failure. Treatment
of the underlying kidney disease may require the use of other medications, such
as corticosteroids (cortisone) or immunosuppressives.
Since many people with kidney disease also have other comorbid medical
conditions, additional considerations often include treatment for elevated blood
cholesterol levels and other risk factors for arteriosclerosis. In fact, in addition to
its role in causing vascular disease, cigarette smoking is an independent risk factor
for chronic kidney failure. Medications may be used to control blood
phosphorous and calcium levels to prevent serious bone disease, which is a major
complication of long-standing kidney failure. Most people with kidney failure
develop anemia because the damaged kidneys cannot produce a hormone that
normally stimulates the bone marrow to make red blood cells. Erythropoietin
(EPO) may be administered when people with chronic kidney disease develop
anemia. It usually results in improved stamina, energy, ability to work, and
performance of other activities of daily living. Importantly, correction of anemia
may be very helpful in preventing the development of an enlarged heart and
congestive heart failure.
Past efforts to control the progression of kidney failure were of limited
22
Twenty-Seventh Institute on Rehabilitation Issues
value. Newer strategies are extremely promising, however, and it is likely that
many people can be expected to live long and productive lives despite having
kidney disease, with or without dialysis and transplantation.
Treatments for Kidney Failure in 1998
Source of Data: USRDS 2000 Annual Report
What is dialysis?
Dialysis is a way to clean the blood by “artificial means”. Dialysis does not
make the kidneys work better. In other words, dialysis is a treatment that does the
work that damaged kidneys cannot perform. Dialysis removes from the blood
wastes and extra fluid that build up because of kidney failure. There are two types
of dialysis – hemodialysis and peritoneal dialysis. Hemodialysis can be performed
in an outpatient facility, or patients can be taught to perform their treatments at
home. Peritoneal dialysis is generally performed in the home. Currently, two
methods of peritoneal dialysis provide excellent options for patients who choose
this form of treatment: continuous ambulatory peritoneal dialysis (CAPD) or
continuous cycling peritoneal dialysis (CCPD), or a combination of both methods.
What is hemodialysis?
“Hemo” means blood and “dialysis” means being put through a filter.
Hemodialysis uses an artificial kidney machine (dialysis machine) to remove fluids
and waste products from the bloodstream. In order to perform hemodialysis,
some type of vascular access must be created. Creating an access requires surgery
23
Chapter 1
In-center
Hemodialysis:
60%
Home Hemodialysis: 1%
Unknown: 3%
Peritoneal Dialysis: 7%
Transplant: 29%
24
Twenty-Seventh Institute on Rehabilitation Issues
Arteriovenous Fistula
From
dialyzer
To dialyzer
Blood removed for cleansing
Clean blood
returned to body
Air detector clamp
Air Trap and air detector
Venous pressure monitor
Dialyzer inflow
pressure monitor
Arterial
pressure
monitor
Blood pump
Heparin pump
(to prevent
clotting)
Dialyzer
Veins
(blood to heart)
Radial artery
(blood from heart)
Fistula
Hemodialysis
to connect together an artery and vein in the arm (called a “fistula”) or to insert
an artificial blood vessel (called a “graft’) either in the arm or in the thigh.
Occasionally, it may be necessary to use a temporary or permanent
external catheter. Blood circulates from the vascular access through the artificial
kidney, and then is returned to the patient in a continuous process that usually
lasts from 3 to 4 hours. Hemodialysis treatments are usually performed three
times weekly (Monday, Wednesday, and Friday, or Tuesday; Thursday, and
Saturday). One of the most important factors leading to a successful and healthy
life on dialysis is having a properly functioning vascular access. Many patients are
diagnosed with kidney failure late in the course of their illness. This makes it
difficult to have the time for the best access to be placed, heal, and develop
correctly. It takes several months for a fistula to satisfactorily mature.
Consequently, many patients have to use dialysis catheters or may undergo
numerous access procedures, leading to increased hospitalization and other
obstacles for rehabilitation.
What is peritoneal dialysis?
Instead of using an artificial kidney as in hemodialysis, in peritoneal
dialysis, the abdominal cavity is used as a filter. A specially designed dialysis
catheter is surgically inserted through the abdominal wall, often just below the
umbilicus (belly button). The dialysis solution that contains glucose and various
minerals, called dialysate, drains through the catheter into the abdominal cavity
(called the peritoneal cavity). During the time this solution remains inside the
peritoneal cavity (dwells), waste products, excess fluid, and salt are drawn out of
the body tissues into the solution. At the end of the dwell time, the dialysate is
then drained and discarded. The patient drains a fresh bag of dialysate into the
peritoneal cavity through the peritoneal catheter, and the process is repeated.
People who use CAPD may do 4-6 “exchanges” a day, with the dialysate
solution remaining inside the peritoneal cavity for 4-6 hours. Dialysis supplies
simply include bags of dialysate (usually 2-3 liters), the plastic tubing that
attaches to the bag, and a warmer (a heating pad or microwave oven). The bag
and tubing look like an IV bag and tubing. The entire exchange procedure takes
only about 20-30 minutes, making this form of dialysis particularly appealing for
many people.
CCPD uses a machine called a cycler to heat the dialysate, drain it in,
track the time the dialysate dwells in the peritoneal cavity, drains the dialysate out,
and measure the amount of fluid removed. Most patients do CCPD while they
sleep, but occasionally they may need to do an extra CAPD exchange during the
day to get enough dialysis.
25
Chapter 1
CAPD and IPD
Dialysate
Catheter
Peritoneum
Abdominal
Cavity
Most peritoneal dialysis patients tolerate the extra fluid extremely well,
with little change in their appearance or ability to perform necessary physical
tasks. Many are able to work or attend school full-time and adapt their dialysis
exchange procedures to what their lifestyle permits or requires.
What will help people on dialysis feel their best?
Obviously, the best measure of how well people are doing on dialysis is
how well they feel and how satisfied they are with their quality of life. Assessing
this requires understanding all the factors that affect someone’s health, including
treatments and multiple constantly changing social and economic issues.
Ideally, doctors will manage their patients according to clinical practice
guidelines and performance measures developed by professional organizations.
The Renal Physicians Association (RPA) has established clinical practice guidelines
on initiation and withdrawal of dialysis and how to prepare a patient for dialysis
and transplantation. The National Kidney Foundation (NKF) has clinical practice
guidelines that address stages of CKD and recommended interventions,
effectiveness of hemodialysis and peritoneal dialysis (dialysis adequacy), anemia
management, vascular access, nutrition, bone disease, and blood pressure control.
These guidelines offer tools for physicians and other dialysis staff to use in
adjusting dialysis prescriptions and medications to optimal levels.
What is transplantation?
Many people view transplant as a cure but it is merely another form of
treatment for kidney failure. Kidney transplantation is an excellent option for
many with kidney failure. Despite newer drugs and other treatments to reduce
the incidence and severity of transplant rejection, some patients must still rely on
dialysis in order to stay alive. Immunosuppressive drugs may cause kidney failure
and other potentially serious side effects. They must be taken indefinitely and
they are very expensive. This last point is extremely important because hundreds
of patients return to dialysis each year because they are cannot afford to pay for
their medications. Federal legislation has been enacted to cover the cost of
immunosuppressive drugs for transplant patients who are Medicare beneficiaries
with certain limitations, but this law does not help many others who have
inadequate or no insurance drug benefits.
Kidneys used for transplantation are obtained from living (related or
unrelated) or deceased organ donors. Until recently, approximately 75 % of
kidney transplants have came from cadaveric donors — those who signed organ
donor cards stating that they wanted to have their kidneys and other organs used
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in the event of their death or whose families made this decision on their behalf.
In the past, only the transplant recipient’s parents, children, or siblings could
serve as live donors. Advances in immunosuppressive medications have opened
the door for transplanting kidneys from genetically unrelated people, usually a
spouse, more distant relative, and even a close friend. Some people have even
donated kidneys to total strangers.
Can anyone get a kidney transplant?
Everyone is entitled to be evaluated for transplant. Total
contraindications to transplantation include active malignancy or infection, and
certain other medical conditions. Psychosocial stability is an important
criterion for transplantation because nonadherence with medications greatly
increases the risk that the transplanted kidney will reject. Having adequate
insurance coverage for the transplant surgery, post-transplant care, and
immunosuppressive drug is another important consideration. Unfortunately,
many otherwise excellent transplant candidates choose not to pursue
transplantation for financial reasons.
An extensive medical and psychosocial evaluation is performed prior to
determining whether someone is suitable for transplantation. In many
circumstances, additional surgery must be performed to correct serious
conditions, such as coronary or peripheral vascular disease. Each transplant
center develops its own guidelines for suitability, pre-transplant testing, and
post-transplant treatment protocols. The United Network for Organ Sharing
(UNOS) has a wealth of information about transplantation.
1998 Number
Number transplants performed 13,212
Number waiting for transplant 38,232
Average wait for 1st cadaver kidney (days) 956
Average wait for 1st live donor kidney (days) 451
Source of Data: 2000 USRDS Annual Report
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Chapter 1
Where is the transplanted kidney placed?
The transplanted kidney is placed in the pelvic area, just beneath the
abdominal muscles. It rests between the pelvic bone and the colon where it is
well protected.
Are there complications after transplant?
Yes, our bodies resist the presence of a foreign substance or tissues from
an outside source the same as our bodies fight bacteria and viruses that cause
illness. Many people who receive kidney transplants experience some degree of
rejection. Having a rejection episode does not mean that kidney will stop working
permanently. Special medications can be given to anyone who experiences a
rejection episode. After transplant, the recipient is taught how to spot early signs
of a rejection episode and when to notify the transplant team.
How long does it take to recover after transplant surgery?
The recovery period varies with each patient and depends on many
variables, such as how well someone tolerates anti-rejection medications, whether
there are surgical or post-surgical complications, and how quickly the
transplanted kidney functions. Usually, someone with a kidney transplant can
return to “normal health and activities” within three months after transplant.
Will someone appear any different after a transplant?
Immunosuppressive drugs frequently have side effects, including changes in
skin and hair. Cortisone-like drugs may cause the transplant recipient to gain weight
and have a round and puffy face. Acne and increased facial hair may also be a
problem, but these untoward effects often improve with reduction in dose. Weight
gain can be prevented by maintaining a healthy diet and by exercising regularly.
Other immunosuppressive drugs may cause gum tissue overgrowth, skin cancers, and
other problems. These conditions are easily treated, but require regular attention.
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Twenty-Seventh Institute on Rehabilitation Issues
Diseased Kidney
Vein
Transplanted Kidney
Transplanted Ureter
Diseased Kidney
Artery
Bladder
What medications might someone with CKD take and do they have any
side effects?
People on dialysis take an average of 8 different prescribed medications
daily,1 although some may take more and others less. People on dialysis usually
take multivitamins, calcium and vitamin D supplements to prevent and control
bone disease, anti-hypertensive medications, iron supplements or intravenous
iron, erythropoietin injections, and many require stool softeners or laxatives.
Those with diabetes usually take insulin or oral hypoglycemic agents. Other
medications include those for pain, gastrointestinal problems, mood disorders,
and anticoagulants. Many people experience medication side effects; dialysis and
transplant patients may be at greater risk because of the increased number of
medications they are required to take.
What innovations in the treatment of kidney disease enhance the
employment potential of people with CKD?
There have been several. Some of these include:
• Erythropoietin (EPO) is a hormone that prevents anemia by helping
those with kidney failure to make red blood cells. Regular monitoring
and treatment of anemia with EPO and oral or IV iron allow those
with kidney failure to consistently feel stronger and have better
endurance. More patients with kidney disease can work full or parttime
and even perform more physically demanding tasks than prior to
1990. Before EPO was made available, people with kidney disease had
to receive blood transfusions to treat anemia. Multiple transfusions led
to increased risks for development of hepatitis and antibodies making
it more difficult to get a transplant. Since EPO, doctors need to
transfuse those with kidney disease much less, reducing the risk of
serious blood borne diseases that could require hospitalization or
spells of disability.
• The focus on outcome management prevalent in the renal industry
today has led to development of practice guidelines to improve the
quality of care, quality of life and potential for people with kidney
disease to work, attend school, volunteer, and pursue age appropriate
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Chapter 1
1 United States Renal Data System, USRDS 1998 Annual Data Report. National Institutes of
Health, National Institute of Diabetes and Digestive and Kidney Diseases. Bethesda, MD,
April 1998. www.usrds.org
activities. In addition to the K/DOQI Guidelines, adequate nutrition
(often referred to as albumin management), exercise, quality of life,
dialysis adequacy, anemia management, and improvements in vascular
access, have reduced hospital admissions and prolonged life. New
transplant anti-rejection medication have improved success rates for
both cadaveric and living donor transplants. Transplantation offers the
best chance of full-time employment because treatment demands are
generally lower and health may be more stable.Technology may make
it easier for people to get kidneys from non-compatible donors, from
cloning, or even from animals.
• Nightly and daily home hemodialysis offer increasingly stable blood
values reducing the need for some medications and improving
functioning and well-being. Patients using this form of therapy have
experienced excellent results with improved stamina, decreased dietary
restrictions, decreased requirements for blood pressure and other
medications, and improved quality of life. Doing dialysis at night while
sleeping or for a couple of hours daily would interfere with work less and
allow more patients to work full-time jobs. These therapies are being
evaluated for cost effectiveness in several centers in the US which could
result in increased Medicare reimbursement and widespread usage.
Who is available in the clinic to assist patients?
Each dialysis facility is required to have a health care team to assist people
with kidney failure. The health care team includes a nephrologist, licensed
professional nurses, technicians, dietitians, and masters level social workers. It is
important for anyone with kidney disease to be an active participant on this
treatment team.
What can VR counselors do to learn more about the person and the disability?
VR counselors report that visiting a dialysis or transplant facility helps
them better understand about kidney disease and treatment. Such interaction also
offers an opportunity to meet key professionals with whom they can collaborate
to improve vocational outcomes for their client. Dialysis and transplant facilities
can be great locations to recruit new clients. A VR counselor who sets one of the
early appointments with a new client during his or her dialysis, may even be able
to request a care conference with the client and staff, get paperwork signed, and
pick up essential medical records. For more information, see Where Do I Go For
More Help or the Directory of Resources sections of this document.
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Living With CKD: A Client’s Perspective (Case Study)
I’ve known most of my life I had kidney disease. From the first physicals
I got in junior high, they knew something was wrong. It wasn’t until I was in
college that kidney disease was diagnosed. When it was diagnosed, the treatments
were expensive and not covered by insurance, so the nephrologist said simply,
“This is something you will die from some day. Exactly when we can’t say.” This
is not what teenagers like to hear!
My kidneys continued to fail gradually over the years. My mood was
driven by my lab tests. If my creatinine levels were stable, I was in a great mood.
If they dropped, I would be depressed for days. The thing that got to me was the
inexorable nature of it all. I knew my kidneys were failing, I knew there was little
I could do about it, and I knew I would hit a dead end eventually.
A couple years ago, it got to the point I had to get ready to go on dialysis.
I went to a dialysis center to see what it was like. I watched someone sit in a chair
and have this machine suck out his blood, clean it, and put it back. I had a panic
attack and had to leave. I just couldn’t see myself being able to sit in a chair like
that for 3 hours, 3 times each week.
I was in denial to the point that I had to have emergency surgery to put
in a temporary catheter and go on hemo. As soon as I could, I went on
peritoneal dialysis. It meant more surgeries, but I felt I had more control over
my life. It was still pretty grim. I had to watch what I ate, how much water I
drank, how much I traveled, and what kinds of activities I did. It just got more
and more depressing.
When I was called about a transplant, my first reaction was fear. Even if
I hated dialysis, I knew I would live through it. The transplant surgery scared
me. I almost said no over the phone. When we got to the hospital, I still kept
telling myself I could walk out if I wanted. As they wheeled me into surgery, I
saw a small cooler sitting in the hallway. That was too much, I was getting up the
nerve to tell them I changed my mind when they knocked me out. That was the
best thing to happen.
I woke up feeling better than I had in years. The medication helped, but
I just felt better. Over the next year, I kept feeling healthier until I couldn’t
remember ever feeling less well than I did. The medication and threat of rejection
are always there, but for me, transplant was the way to go.
As I look back now, I see how the chronic kidney disease really shaped my
life. I chose careers because of my interest in medicine and rehabilitation. I chose
and rejected jobs because of the insurance. I chose not to have kids until I was
certain the therapy was good enough so I could live to watch them grow up. Even
then, I didn’t want to have birth children because I didn’t want to risk them
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Chapter 1
inheriting what had caused my kidney disease.
If I could tell rehabilitation counselors anything, it would be that people
with chronic kidney disease make great clients. It’s just that, as we get sicker, we
don’t have enough energy to do much, so we look tired and lazy. As we listen to
physicians, we get depressed and think we are in a hopeless situation. By the time
we start dialysis, we are convinced we have little to offer and less to enjoy. So you
have to reach us early, when we have energy, confidence, and hope.
Whatever you do, don’t look at someone sitting in the dialysis chair and
form your impressions on the basis of what you see. And for goodness sake, tell
social workers what VR does. My social worker knew nothing about VR and acted
like I may as well give up trying to make a living.
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33 2Chapter Two
Referral
Can the applicant with kidney failure work?
Yes, definitely. People with kidney failure bring many assets to the world
of work. Many applicants with kidney failure have at least a high school education
and many have college or post-graduate degrees. Many have prior work histories.
If they are working when they start dialysis, many continue to work. An
understanding employer can help by adjusting the work schedule to fit with the
dialysis schedule. The applicant’s dialysis facility may be able to schedule
hemodialysis to allow those that are working to return to work as soon as possible
following initiation of treatment.
What are the most likely sources of referral for those with chronic kidney
disease (CKD)?
Potential applicants with CKD are plentiful, and there is help available to
access them more easily. There are three primary referral sources for adults with
CKD:
• Dialysis facilities
• Transplant centers
• Nephrologists’ offices
The primary referral contact in nephrologists’ offices is generally the
office nurse or the social worker, if the practice has one. For dialysis and
transplant centers, the social worker is the primary source of contact to obtain
referrals.
Referrals of adolescents can come from the school in addition to the
above sources. The primary point of contact in the school is the special services
coordinator, the school nurse, or teachers, the same referral sources for youth
with other disabilities through transition of school to work programs.
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Chapter Two
Referral
How can VR counselors access appropriate referrals of those with kidney
disease in areas with many providers?
When a large number of nephrologists’ practices, dialysis facilities, and
transplant programs exist, VR counselors can turn to organizations that can help
link the counselor with appropriate referrals through dialysis and transplant
facilities in a specific VR service coverage area. The National Kidney Foundation
(NKF) has affiliates throughout the country. Affiliates maintain contact with the
dialysis and transplant facilities and with nephrology social workers employed by
these centers. Many social workers working in dialysis and transplant facilities are
members of the NKF’s Council of Nephrology Social Workers (CNSW). NKF
can make introductions and provide the names of appropriate social workers. In
addition, NKF affiliates can include VR in seminars and invite VR personnel to
speak to groups of those with kidney disease and renal professionals.
Another organization that can help VR counselors identify potential
referral sources is the End Stage Renal Disease Network. There are 18 ESRD
Networks (Networks) across the U.S. that are charged with overseeing care in
dialysis and transplant programs and promoting rehabilitation of those with
CKD. Like NKF affiliates, Networks can link VR counselors with dialysis and
transplant facility personnel and promote VR through publications and
conferences for patients and staff.
Another organization that can link VR counselors to appropriate referrals
is the American Association of Kidney Patients (AAKP). This national
organization, made up of people with CKD, has chapters in many states and
members eager to help others with kidney disease link with VR agencies.
Who is the mostly likely source of VR referrals from dialysis and transplant
facilities?
The nephrology social worker is the vocational contact at both the
dialysis unit and transplant center. These social workers are charged with
assessing and helping those with psychosocial needs, including rehabilitation. For
instance, if someone tells his or her physician about interest in returning to work
or trouble on the job, the physician will most likely refer him or her to the
nephrology social worker. As part of their comprehensive psychosocial
assessment, nephrology social workers assess employment status within 30 days of
initiation of treatment. They provide counseling, education, referral and concrete
services as each need is identified. Typically, the social worker is the facility staff
member who makes referrals to state VR. It is essential for the VR counselor to
collaborate with and educate nephrology social workers to help them understand
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Chapter 2
services and how to make appropriate referrals. A good place to start is to offer to
make a presentation at a CNSW meeting. Contact the NKF affiliate to learn how
to seek time on the CNSW meeting agenda. Meetings are open and VR
counselors can attend to solicit referrals. The NKF affiliate can add VR
counselors to the mailing list to receive meeting notices.
Where can VR counselors find the most up-to-date medical information on
an applicant with CKD?
The dialysis or the transplant center has recent and accurate medical
information on potential rehabilitation referrals. Medical records are constantly
updated. Those who receive in-center hemodialysis are seen by a physician,
physician assistant, or nurse at every treatment while those that receive home
dialysis treatment or have a functioning transplant are seen less frequently. The
VR counselor can contact the dialysis facility social worker who will bring the
medical form to the nephrologist’s attention. VR counselors who need additional
information can contact nephrologists directly.
For applicants with multiple diagnoses in addition to CKD, the VR
counselor will need to contact other practitioners if these diagnoses could
potentially affect employment. If the applicant is also receiving psychological
counseling outside the dialysis or transplant facility, it is important to contact that
mental health provider too.
Who can provide information about the applicant’s financial resources and
insurance coverage?
Applicants are the first resource for this information. In addition to
assessing the applicant’s vocational status and goals, the nephrology social worker
is the staff member at the dialysis and transplant facility that has the most recent
information on applicants’ health benefits and financial status. If more detailed
information is required, the VR counselor can contact the local Medicaid office
and ask to speak to the specialist on dialysis-related coverage or someone who can
answer questions about this coverage. For information on Medicare coverage,
there is a special handbook for dialysis and transplant services (see the Directory
of Resources section). If applicants have private insurance and a benefit issue
needs to be addressed, the VR counselor could contact the plan administrator or
ask applicants for a copy of their benefit booklet.
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Twenty-Seventh Institute on Rehabilitation Issues
How stable is the applicant’s condition?
Like those with any chronic disease, applicants with CKD may have
episodes of acute illness. However, once applicants with CKD adjust to dialysis or
recuperate following a transplant and learn how to take care of themselves, their
health should stabilize and functioning should improve. When someone starts on
dialysis, it often takes a month or more of treatments to physically adjust to
treatment. Some people starting dialysis continue working without a break.
Others need to take a leave of absence to physically adjust to treatment.
What are the emotional and/or psychological effects of dialysis?
Emotional adjustment can take a year or longer as people grieve for the
loss of their kidneys, health, and even their dreams and aspirations just as someone
would grieve following the death of a loved one. The applicant’s mood may range
from excitement and anticipation to moodiness and seeming lack of motivation at
different interviews, depending on the stage of grief the applicant is experiencing
at that time. Applicants often have issues related to body image that can affect their
emotional adjustment. The VR counselor should be alert to changes in mood and
refer applicants to mental health professionals when appropriate.
How will the applicant who is just starting dialysis appear during an intake
interview?
Applicants just starting hemodialysis may have a catheter inserted into
their upper chest or chest. There may be two plugs sticking out from this catheter
that are covered with a dressing. The catheter has to be kept clean and is only
temporary until someone can have an access placed, usually, in the lower arm.
Usually clothing will hide the catheter.
When a hemodialysis access is surgically placed under the skin, the
applicant’s arm may become swollen, red, and tender. Most accesses are placed
below their elbow, but sometimes an access is placed above the elbow on the
inside of their upper arm or even in the thigh. With time the swelling and redness
should go away. However, a hemodialysis access may appear prominent and
bumpy and there will be scars where each access has been placed.
A peritoneal catheter is surgically placed in the abdomen before someone
starts peritoneal dialysis. This takes a few weeks to heal. While the catheter site
is healing, an applicant may feel discomfort and some pain. The VR counselor
may observe these applicants having difficulty sitting down, standing up, or
bending since these movements can aggravate where abdominal muscles were cut.
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Chapter 2
Unless an applicant has a rounder belly because of extra fluid, it is difficult to tell
he or she is on peritoneal dialysis because clothing hides the catheter.
Do applicants with kidney failure need to make any lifestyle changes?
In addition to having dialysis or a transplant, applicants with kidney
disease need to understand and follow their diet and medication prescription.
Learning to live with treatment for kidney failure may be a minor adjustment for
some people or it may demand a major change in lifestyle and choices for other.
As stated previously, most of those with kidney failure experience some
depression, sadness, and/or anxiety about what kidney failure will mean to their
lives as they adapt.
How important is it that applicants follow diet and fluid prescription?
It is extremely important that applicants on dialysis or applicants with a
kidney transplant understand and follow their prescribed diet2 and fluid
restriction (if any) to avoid complications of kidney disease. Some complications
of CKD include bone disease, congestive heart failure, and even heart attack.
Applicants on dialysis must usually restrict their intake of potassium,
phosphorus, sodium, and fluid and eat more protein to avoid malnutrition.
Dialysis and transplant facilities have renal dietitians who educate those with
kidney failure about their diet and fluid prescriptions and provide regular
laboratory updates to help them see how well they are adhering to their dietary
and medication prescription.
Common reasons for non-adherence include lack of understanding,
depression, denial, and finances. Applicants should be encouraged to talk with
their doctor, dietitian, nurse, or social worker about diet and fluid restrictions and
seek tips to help them adhere more closely. The social worker may be able to help
them locate financial resources if this is a barrier to adherence.
Where does the applicant with kidney failure do dialysis?
To learn more about each of the treatment options, read Chapter 1. In
brief, in addition to transplantation, dialysis options for CKD include:
• Hemodialysis if done in a dialysis facility requires little training
• Hemodialysis if done at home requires about 6 weeks of training
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2 National Kidney Foundation: Clinical Practice Guidelines for Nutrition in Chronic Renal
Failure, 2000. www.kidney.org/professionals/doqi/doqi/doqi_nut.html
• CAPD done at home requires 1-2 weeks of training
• CCPD (cycler) done at home requires 1-2 weeks of training
• A combination of CCPD done at night and one or more CAPD
exchanges during the day requires 1-2 weeks training
What is the applicant’s dialysis schedule and how long do treatments last?
As shown in the chart in the Introduction to this document, the most
common type of dialysis by far is in-center hemodialysis. Applicants on in-center
hemodialysis have treatments three times a week on the same schedule every
Monday, Wednesday, and Friday or Tuesday, Thursday, and Saturday. Some
centers offer early morning or evening shifts. Schedules vary for Thanksgiving,
Christmas, and sometimes for New Year’s. The next most common type of
dialysis is continuous ambulatory peritoneal dialysis (CAPD). With CAPD,
applicants must do exchanges 4-5 times daily 7 days a week. A CAPD exchange
takes approximately 30-40 minutes and is generally done around breakfast,
lunch, dinner, and bedtime. Someone who does continuous cycling peritoneal
dialysis (CCPD) also called automated peritoneal dialysis or cycler dialysis uses
a machine to do dialysis exchanges overnight during sleep. Those on home
hemodialysis do dialysis three times weekly just like in-center hemodialysis.
Short daily home dialysis is done two hours a day usually before or after work
and nocturnal daily home hemodialysis is done overnight during sleep. These
latter two daily types of dialysis are being evaluated for cost effectiveness and are
only available in a few dialysis facilities. Any form of home dialysis is less likely
to interfere with the applicant’s vocational evaluation, training, work or school
schedule than in-center hemodialysis.
How flexible can the dialysis schedule be?
Applicants that need dialysis receive it on the same schedule each
treatment. However, applicants can request a different dialysis time for short
periods or permanently. Facilities can prioritize schedules for those who are
working or in school. Some dialysis facilities have dialysis shifts that start early or
continue after 5 p.m. Those that do not offer evening dialysis state that low
utilization, higher labor costs, and concerns about safety in some areas are reasons
for not doing so. If enough people request it, a facility that does not offer an
evening shift may consider offering one.
If an evening shift is not available and work hours cannot be changed, an
applicant may need to consider changing to a facility that can accommodate his
or her work schedule. Dialysis Facility Compare (see Directory of Resources) has
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Chapter 2
information on facilities offering dialysis after 5 p.m. and those that offer home
dialysis. The Network can also provide this information.
How might the applicant with chronic kidney failure feel before and after
dialysis?
This depends on the applicant and the type of dialysis. Because treatment
is gentler and more like normal kidneys function, applicants on peritoneal dialysis
(CAPD or CCPD) do not generally feel much different before and after dialysis.
Some applicants on hemodialysis feel the same before and after dialysis while
others feel sluggish and fluid overloaded before dialysis and/or “washed out” and
exhausted after dialysis. Some symptoms can be avoided if applicants with kidney
disease are careful about the amount of fluid they drink and what they eat between
dialysis treatments. Adherence is essential to optimize health and ability to work
or attend school or training.
How might kidney disease affect the applicant’s stamina?
When kidneys fail, the body may not be able to make a hormone called
erythropoietin. In healthy people, this hormone alerts the body when more red
blood cells are needed to carry oxygen to all the tissues of the body. Applicants
who have too few red blood cells are anemic. Anemia causes symptoms of fatigue,
low endurance, lack of energy, memory problems, and can lead to cardiac
complications. Anemia becomes more pronounced with dialysis and usually
improves with kidney transplant. Applicants should be encouraged to know their
laboratory counts, to report symptoms, to take oral or intravenous iron and
intravenous or subcutaneous injections of erythropoietin (EPO), to get adequate
dialysis, and to exercise. All help keep anemia under control.
How does the applicant think working might affect his/her health?
Some applicants with kidney failure may worry about how working will
affect their health. Those who have not worked for some time while they were
ill may be more likely to have this concern. Applicants who worked while on
dialysis are less likely to be concerned about how working will affect their
health. Suggest that applicants talk with their nephrologist or other healthcare
provider about what they can do to stay as healthy as possible. In most cases,
working appears to help those with kidney disease do better physically,
emotionally, and financially.
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Twenty-Seventh Institute on Rehabilitation Issues
How does being on dialysis (or having a transplant) affect an applicant’s
ability to work?
There is likely to be some variability in different applicants’ ability to
work. For those on dialysis, fatigue may keep them from returning to former
employment, especially if their physician restricts certain kinds of work. How the
applicant feels immediately before and after dialysis and the time needed for
dialysis can limit type of work and work hours. These issues can be addressed by
looking at job restructuring or accommodations that allow the applicant to keep
their current job or to obtain new employment.
By contrast, applicants with successful kidney transplants do not have
scheduling restrictions and may be able to handle jobs requiring more physical
labor. Applicants with functioning transplants may be restricted from working
in direct sunlight, with chemicals, or at healthcare facilities where they might
be frequently exposed to infectious diseases because of side effects of
immunosuppressive medications they take to keep the body from rejecting the
transplant.
Does the applicant have any sensory limitations?
Applicants on dialysis are more likely to have neuropathy if they have
diabetes or if the dialysis provided is not enough to remove toxins effectively and
applicants with diabetes can also have vision loss and/or mobility impairments.
In some cases, antibiotics given for infections may have affected hearing and
caused dizziness.
What kinds of working conditions might the applicant need to avoid?
Applicants with anemia feel changes in temperature more than healthy
people. They often complain of being cold even when others are comfortable.
Therefore being outdoors in cold temperatures may not be advisable. Some need
to remain in air conditioning during the summer. Others like to spend some time
outdoors so they can rid themselves of extra fluid and toxins by perspiring.
Applicants on CAPD need a clean environment during the brief time that they
perform a dialysis exchange.
Applicants with new kidney transplants should avoid crowded places in the
initial few months following kidney transplant because the immunosuppressive
medications they take make them more susceptible to germs. Those who do not
perspire normally should avoid working outdoors in hot temperatures to avoid
heat stroke. Applicants with successful kidney transplants do not have to avoid
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Chapter 2
dusty environments, but they should avoid environmental hazards, including
chemicals, that could damage their transplanted kidney. The nephrologist or
transplant surgeon could provide information on what workplace hazards
potentially damage kidneys.
Might the dialysis access sites pose any work limitations?
Applicants on dialysis must protect their dialysis access from prolonged
weight that could cut off the blood flow through it. These applicants should also
avoid allowing sharp objects anywhere near their access site without wearing
protective covering. Because accesses are placed under the skin, the only risk of
infection in the workplace would be if the access is punctured. In this case,
applicants should put enough pressure on the puncture site with a bandage to stop
the bleeding and seal the wound. As soon as possible, applicants should then
notify their treatment center.
Some applicants on dialysis are embarrassed about how their dialysis
access looks. Multiple needle sticks leave scars in different areas of the
hemodialysis access. Some of those on hemodialysis worry that those who have
never known someone on dialysis will think that they use recreational drugs. For
this reason, they may wear long sleeves year round.
In most cases, hemodialysis catheters in the chest or neck area are under
clothing. Applicants should avoid any activity that could potentially puncture or
dislodge the catheter and should keep the exit site clean and dry. Applicants
should be encouraged to ask a dialysis nurse what kind of dressing to use if the
workplace is wet or especially dusty.
Peritoneal catheters are sewn into the abdominal tissues and hidden and
protected under clothing. Applicants should avoid work activities that might poke
through clothing and puncture the catheter as this could cause leaking and
peritonitis, an infection.
What kind of limitations in lifting, bending, reaching, prolonged standing,
walking, stooping, or kneeling might applicants on dialysis have?
Because applicants on dialysis often have lower strength and endurance
due to anemia and lack of physical activity as their kidneys were failing, they may
need both a physical functioning assessment and exercises to strengthen their
muscles. Exercise and anemia management are important to give these applicants
the greatest opportunity to be fully functional, including being employed.
Some doctors restrict the amount of weight that an applicant on
hemodialysis should lift in order to protect the vascular access. Others believe that
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Twenty-Seventh Institute on Rehabilitation Issues
no amount of weight lifted will damage the hemodialysis access. There is no known
scientific evidence that links lifting specific amounts of weight to an increased risk
for hemodialysis access problems. Since with CAPD two or more liters of fluid are
carried in the abdominal area, these applicants should ask their physician and/or
home training nurse how much weight they can lift without risking getting a hernia.
Applicants on dialysis may need to rest intermittently on the job to gather
strength to continue physical activity, especially if the job is a physical one. Those
who get dizzy when moving from one position to another (orthostatic
hypotension) should allow time to adjust to a new position.
Is a kidney transplant a possibility for this applicant?
A kidney transplant offers enhanced opportunities for rehabilitation, but it
is not a cure. Some applicants may not be interested in receiving a kidney transplant
because of such concerns as fear of surgery, success rates, and financing transplant.
Others may not be candidates because of their physical condition and high surgical
risks. Applicants who are not likely to be candidates for transplant include those
with HIV infection, metastatic or untreated cancer, severe psychiatric illness,
psychosocial problems that cannot be resolved, and coronary artery disease that
cannot be corrected. Applicants with substance abuse history, chronic liver or
cardiac disease, genito-urinary abnormalities or chronic urinary tract infections, or
poor lower extremity circulation will need further testing before being considered
for a transplant. Applicants whose cancer is in remission must postpone transplant
long enough to be sure that cancer cells do not linger in the body. Those with a
substance abuse history must have completed treatment. Transplant facilities have
policies about how soon they will list someone for a kidney transplant after a cancer
diagnosis or after substance abuse has ended. The United Network for Organ
Sharing (UNOS) has a wealth of information about transplantation (see Directory
of Resources section). Finally, someone who is not a good candidate for a transplant
may still be an excellent candidate for vocational rehabilitation.
Is the applicant on a transplant list and does he/she have a pager?
In 2001, there were almost 48,000 people awaiting kidney transplant. In
1999, about 12,500 kidney transplant were performed, of which less than 4,500 were
from live donors.3 Because there are few living donors, most applicants that need a
kidney will wait for one from someone who has died and donated their organs.
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3 U.S. Facts About Transplantation, United Network for Organ Sharing. Retrieved February 20,
2001 from the World Wide Web: www.unos.org/Frame_default.asp?Category=Newsdata
Contrary to what many people believe, the transplant list is not on a
“first-come, first-serve” basis and it takes time to be evaluated and listed. Under
the current system of organ allocation, time on the transplant waiting list varies
greatly. How long someone will wait depends on his or her blood group (A,B,O,
or AB), tissue type (HLA match), antibody (PRA) level, time on the waiting list,
and age (for children). Those needing multiple organs (such as a kidney-pancreas
transplant for a diabetic with kidney failure) generally wait less time. There are
national policies on how organs are distributed. Each transplant program has its
own criteria for who they will transplant.
Applicants who are told they are not candidates at one transplant program
can interview at a different program. Some applicants may choose to be listed at
more one transplant program — perhaps one locally and another in an area where
waiting times are shorter. Applicants who have been evaluated by the transplant
team and determined to be good candidates physically and emotionally often get
beepers to notify them if a potential organ is available so they can contact the
transplant program quickly no matter where they are. UNOS recommends that
potential transplant recipients live no more than six hours from any transplant
program where they are listed.
Does the applicant anticipate being hospitalized for a transplant soon?
Only applicants with willing and eligible live donors can answer this
question affirmatively. Transplant programs evaluate potential live donors
including parents, siblings, and even non-related people such as spouses, friends,
or occasionally unselfish strangers. Other considerations besides health status
include age, antigens, and blood group. A transplant from a live donor can be
scheduled at the convenience of both the donor and recipient. Once employed or
in school or training, the applicant should also consider job or school demands
since getting a transplant will require time off for recuperation.
Most transplant recipients spend a few days in the hospital although stays
may be longer if complications arise. Recipients generally recuperate at home for
the next 4-6 weeks. Often they can return to work in three months, sooner if they
have a job in an “isolated” office setting. When it is safe to return to work is not
generally based on the surgery itself, but is based on the risk of infection until
immunosuppressive medications are regulated to a safe level.
A kidney transplant is considered major surgery. An applicant who has an
unsuccessful transplant can return to dialysis and eventually get back on the
transplant list. Some people with kidney failure have had multiple kidney
transplants during the course of kidney disease.
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Might applicants with kidney transplants have any limitations?
A donor kidney is placed in the lower abdomen and in most cases natural
kidneys are not removed to get a kidney transplant. As stated previously, it takes
time to heal, for the kidney to stabilize in its new body, and to regulate the
immunosuppressive medications. There are no specific work limitations for
kidney transplant recipients except that a high SPF sunscreen is essential if
applicants are considering outdoor work to reduce skin cancer risk. Those
applicants with transplants who have brittle bones from having been on dialysis
for a number of years may need to limit some types of work. The transplant
surgeon or nephrologist is the best source of information for specific physical
limitations that could affect employment of an applicant with a transplant.
How often does the applicant have medical appointments?
Those who do hemodialysis at a center must go for treatment three
times weekly on a set schedule. They need to stay for the entire prescribed
treatment time each treatment and cannot skip a treatment or they risk illness,
hospitalization, and death. They also have doctor’s appointments occasionally.
Those who do home dialysis have clinic appointments about once a month, but
they may need to go to the clinic more often for EPO injections, blood draws,
or if problems arise.
Transplant recipients have appointments very frequently immediately
following a transplant. The time between these visits lengthens to monthly
during the first year. If there are complications, such as rejection episodes,
doctor appointments may be more frequent for awhile. As the time since the
transplant gets longer, appointments are farther apart and eventually an
applicant with a transplant will go to his or her doctor annually or if problems
arise. Applicants should be encouraged to keep all appointments, even if they
feel healthy. It is especially important for applicants with transplants to get
medical attention when they feel ill as this could be an early sign of rejection
that could be resolved with medication.
How important to a successful vocational outcome is a support system for
applicants with kidney failure?
Many people with kidney disease start out with a pessimistic outlook and
a negative impression concerning life with dialysis. This is a significant barrier to
a successful employment outcome. Applicants and their families must believe that
employment is possible. Renal professionals can inform applicants when
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technological advances occur that could improve functioning. They can also
inform applicants and family members about what applicants can do to improve
their chances for successful vocational rehabilitation.
Family and friends can provide critical support that strengthens
applicants’ ability to cope with changes they confront as they undergo treatment
and as they attempt vocational rehabilitation. This support network can help
applicants address the uncertainty of changing health, treatment, and stress of
attending school or training and looking for a job. It can help ensure that
applicants stick to their dialysis schedule, seek transplant evaluation, and follow
through on planned activities, including VR appointments. An extended support
network can also include local support groups for applicants with kidney disease
and their family members. Some NKF affiliates and dialysis and transplant
programs have peer support programs for people with kidney disease and their
families. Online support groups can also provide the encouragement applicants
need to actively pursue vocational rehabilitation. (See Directory of Resources
section for more information).
Research has shown that family members and members of the healthcare
team, especially doctors, strongly influence perceptions of those on dialysis
regarding their ability to work (Curtin, 1996). It is important to find out if
applicants or their families are concerned about loss of cash or medical benefits
and whether they believe that working or attending school will compromise their
health. If so, the applicant and/or family could consciously or unconsciously
sabotage a rehabilitation plan. The treatment team can clear up misperceptions.
Family members may experience grief and loss associated with role changes and
need emotional support (see Directory of Resources for caregiver support).
Dialysis and transplant personnel may discourage applicants with kidney
failure from working if they believe working will lead to loss of Medicaid or other
health insurance. It may be important for VR counselors to educate dialysis and
transplant personnel about work incentive programs that allow applicants to keep
these benefits and/or the availability of jobs with benefits in the area.
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The Dialysis Social Worker As A Referral Resource (Case Study)
He began hemodialysis in 1998 when he was 41. Before starting dialysis,
he worked for warehouses and did construction work. Immediately after he
began hemodialysis, as the dialysis social worker I completed my psychosocial
assessment, talked with him about his work experience, and suggested he seek
VR assistance from the Texas Rehabilitation Commission. Instead, he declined
and applied for Social Security Disability.
I continued to talk with him, educating him about his options including
the availability of work incentive programs. I encouraged him to set long and
short-term goals and reminded him that VR services were available to him.
During his second year on dialysis, he felt better physically and decided to apply
for VR services.
I referred him to the VR office that served his area. I made sure that his
medical records were transferred to the VR counselor in a timely fashion and with
his consent, I communicated with the VR counselor about his special needs as
someone on dialysis.
After reviewing his medical records and assessing his vocational interests
and goals, the TRC counselor and the client decided that he should seek further
training. The TRC counselor helped him to locate financial assistance and a
program for computer technician training. While on dialysis, he completed his
coursework and certification exam and was seeking employment when he received
a call recently for a cadaveric transplant.
While he is recuperating from surgery, his VR case has been suspended.
He is keeping in close contact with his VR counselor and is anxious to begin his
new career with her help when his health stabilizes.
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49 3 Chapter Three
Vocational Service,
Planning, and Delivery
What are the client’s vocational goals?
Clients with kidney disease have the same types of vocational goals as
other job seekers and they may do many different types of jobs. People with
kidney disease have been automotive engineers, business managers, computer
software developers, computer system analysts, counselors of various types, data
entry personnel, daycare providers, food service workers, investment counselors,
janitors, nurses, occupational therapists, physicians, police officers, postal
workers, rehab counselors, teachers, telemarketers, woodworkers, etc. Selfemployment
and telecommuting occupations are attractive alternatives for clients
with CKD. The list of possibilities is endless.
If the client is working now, what might he need from VR to help him/her
keep the current job?
For those who are currently working, the key to keeping them on the job
is to develop a plan with the client, the employer, and the treatment team to
address issues that might threaten continued employment. For those on dialysis,
there might be scheduling issues, hospitalizations, and changes in physical
abilities. For those on the transplant list, there would need to be time off for the
actual transplant, adjustment to medications, and any complications that might
arise. For transplant recipients, there would need to be time off for laboratory
tests and doctor’s appointments. A proactive plan which leaves the lines of
communication open, maximizes the likelihood that the client will be able to keep
his or her job and the assistance of a VR counselor can make the difference.
Is the client looking for immediate work or a career?
This depends on the client. Some clients are looking for a way to
supplement their income without jeopardizing their benefits. Others are tired of
a life that revolves solely around dialysis and are looking to focus on a career.
Clients who have received a transplant and have had some of their restrictions
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Vocational Service,
Planning, and Delivery
lifted may start to consider a career that would include benefits to help pay for
their immunosuppressant medications.
Does the client want to work full or part-time?
To clients considering returning to work after a long period of
unemployment and adjustment to dialysis and/or transplant, a part time job can
be appealing. It allows them to test their strength and stamina. Clients who
continued to work throughout their transition to dialysis or transplant may want
to continue to work in that same capacity.
Is full-time work an option?
Full time work is always an option. It will depend primarily on the client’s
health, the employer’s readiness, and dialysis unit’s willingness to make the
necessary accommodations that will allow the client to meet his/her medical and
employment obligations.
What work hours are best for the client — before or after dialysis?
Since many studies report that those on dialysis have physical functioning
below that of the general population, clients with kidney disease must establish
vocational goals that match their physical strength and endurance. Many clients
have other illnesses such as diabetes, hypertension, lupus, AIDS, or even mental
illness in conjunction with chronic kidney disease (CKD). These illnesses must be
carefully controlled through medication.
Kidney disease, dialysis, and transplantation affect people differently.
What one experiences may be quite different from another. When kidneys are
failing and can no longer manufacture the hormone erythropoietin, this leaves
most feeling tired and weak. Some clients report that they have low blood
pressure, feel lightheaded and exhausted immediately after dialysis, and cannot
fully function until they have something to eat and take a short nap. For others,
strength and endurance is best immediately after dialysis and for the remaining
12-18 hours. Some clients with kidney disease say that they feel best on nondialysis
days. Others feel lethargic and unable to do all the activities they want to
do right before their next dialysis.
Adherence to the kidney diet, keeping lab values in the acceptable range,
and being sure to get enough dialysis must be considered in establishing the
vocational goal and work schedule. This calls for keeping lines of communication
open among the dialysis staff, client, and vocational counselor. The flexibility of
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the dialysis center and the employer in scheduling work hours and treatment have
an impact upon the client’s morale and his or her ability to perform duties of the
job, as well as the client’s ability to complete every dialysis session and get enough
dialysis to stay healthy.
Is it possible to schedule dialysis around work or does a job need to have a
flexible work schedule for a client who is on dialysis?
How flexible work hours must be depends on whether the dialysis facility
prioritizes shifts for those who work and whether it offers evening hours for
dialysis. If not, perhaps the client could consider different work shifts from
normal daytime hours or should schedule dialysis very early in the morning or
as late in the afternoon as possible and make up work hours missed on nondialysis
days.
Would work adjustment training be an option if the client has not worked
in a long time, never worked, or has a sporadic work history?
The client may need work adjustment training. Work adjustment training
helps clients acquire personal habits, attitudes, and skills to function effectively on
a job, develop or increase work tolerance prior to engaging in vocational training
or employment, develop work habits and orientation to the world of work, gain
skills or techniques to compensate for losses due to disability, and acquire jobseeking
skills and locate employment. Those who are deaf, hard-of-hearing, or
blind, will need specific accommodations and/or assistance to coordinate services
during work adjustment.
How much money does the client with kidney failure want or need to earn?
For some, the amount of money earned may be of little or no
consequence. Satisfaction from working is what they are seeking. For those
receiving SSI or SSDI benefits, it is important that they earn enough from work
to offset what they will lose in disability benefits and from paying taxes and other
work-related expenses. If possible, any potential job should offer health benefits.
If this is not possible, the salary should be either sufficient to cover out-of-pocket
expenses for medical care and Medigap (Medicare supplement plan) premiums
or low enough for the client to qualify for Medicaid. Clients who are receiving
various subsidies will need to calculate in the costs of returning to work what
they will lose in other benefits such as housing subsidies, food stamps, child care
and other benefits they receive. Clients need to understand how working will
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affect all benefits so they can make informed decisions about the level of
employment they need and want.
How do clients with CKD pay for treatment?
Kidney failure is the only disability-specific criteria that make people
eligible for Medicare. About 93% of all those that need dialysis or a transplant are
eligible for Medicare. Medicare is effective immediately for those who choose to
do home or self-care dialysis. Medicare can start up to 2 months before a
transplant if transplant is the first treatment for kidney failure. There is a 3 month
waiting period for Medicare for those that do in-center hemodialysis.
If Medicare is the primary payer, after an annual deductible is met,
Medicare will pay 80% of the allowable charge for outpatient care, including
dialysis. After the inpatient deductible is met, Medicare pays most of the charge
for inpatient hospitalizations unless they are lengthy. Medicare coverage is also
available for a few medications including anti-rejection medications following
transplant, erythropoietin, IV iron, and vitamin D.
Those clients that are insured through their own or a spouse’s current
employer health plan can apply for Medicare but it will only pay secondary
benefits after the employer group health insurance pays for the first 30 months of
Medicare eligibility. If the client has Medicare and the employer health insurance
denies coverage for any Medicare covered services, Medicare can pay primary
benefits. Medicare may pay employer health plan deductibles or coinsurance with
certain limitations. See the handbook on dialysis and transplant coverage under
Medicare listed in the Directory of Resources section.
Does the client need to have company health insurance and sick leave?
It is best if VR counselors look for jobs with company health insurance and
sick leave for clients who have kidney disease. Even though Medicare coverage
continues as long as the client with CKD pays the premium and is on dialysis and
for at least three years post-transplant, it does not pay for the following things:
• Deductibles for inpatient and outpatient care
• Co pays of 20% of the allowable charge for outpatient care, antirejection
medication and specific daily amounts for long hospital stays
• Take home medications
• Non-covered services
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What other sources of help are available for a client’s medical costs if the
job does not offer health insurance?
Medigap insurance pays deductibles and coinsurance not paid by
Medicare for Medicare covered services. Some states do not have any insurers
that offer Medigap coverage to people with pre-existing conditions like kidney
failure. Other states have regulations that forbid companies that sell Medigap or
Medicare supplement insurance to those 65 and older from excluding those under
65 with pre-existing conditions from purchasing Medigap coverage. If their
employer does not offer health insurance, clients with kidney disease need to
consider obtaining or retaining Medicaid coverage.
The Health Insurance Portability and Accountability Act (HIPAA) credits
those with recent qualifying health insurance coverage for any part of a preexisting
waiting period they met while insured by their previous health insurance
when they get new health insurance.
Some states offer special coverage for people with kidney disease under
state kidney programs. Eligibility and coverage varies from state to state. Contact
the nephrology social worker to find out if there is a state kidney program.
Medicaid, some commercial insurance, some Medigap plans, and some
state kidney programs pay for medications. Some pharmaceutical companies
provide help for clients that need certain medications. Contact the social worker
or see the Directory of Resources section for medication assistance.
Will a client’s Social Security disability benefits be affected if he or she
receives help from VR?
VR services do not affect Social Security disability benefits. However, paid
work activity may affect a client’s benefits, depending on how much is earned. It is
important for VR counselors to understand the complex Social Security work
incentive programs and continuously review them with clients who receive SSI or
SSDI as they progress through their program. Clients need to understand and
accept that their earnings may affect their benefits. The VR counselor can address
most concerns, but specific issues should be addressed with the local Social Security
office, work incentive liaison, or in some communities with the SSA employment
support representative who has received intensive training on work incentives.
Transplant recipients may be especially motivated to work with VR. Their
continuing disability status is automatically reviewed following transplant and they
may lose benefits.
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How might work incentives benefit clients with kidney failure?
The Ticket to Work and Work Incentives Improvement Act (TTWWIIA)
makes it easier for clients with kidney disease to enter the workforce by expanding
available employment service providers. In 2001, 13 states began implementing
new Ticket to Work vouchers that disability recipients can use to obtain VR
services from public or private agencies. By 2004 residents of all states will receive
these vouchers. Since most people with kidney failure are eligible for and receive
disability benefits, they should receive vouchers when their states implement the
voucher system.
TTWWIIA expands Medicare for a total of 8.5 years for those who
return to work who wouldn’t normally be able to keep Medicare. This could be
especially important for transplant recipients that have other disabilities besides
kidney disease and want to work.
The TTWWIIA also allows states to expand Medicaid benefits to those
with disabilities who work either without premiums or at a below market
premium. Therefore, clients with kidney failure who feared losing Medicaid if
they worked may be more motivated to seek job training and/or employment
once they understand the new work incentives available under TTWWIIA. States
that have expanded Medicaid benefits for working people with disabilities are
listed on the Medicaid website.
In addition to TTWWIIA, SSA has a number of work incentive programs
for recipients of SSI and/or SSDI, including those with kidney failure. In 2001,
clients who receive SSDI have a nine-month trial work period (TWP). Any
month that an SSDI client earns $530 or more counts as a month of trial work.
In 2001, after the TWP is exhausted, SSDI clients can earn up to the substantial
gainful activity (SGA) level of $740 per month ($1,240 for your SSDI clients who
are legally blind) and still keep their full SSDI check. SSDI clients can earn more
if they have received SSA approval for impairment related work expenses (IRWE)
or blind work expenses (BWE). For the first time, the earnings limits for the
TWP and SGA are now linked to the national wage index and will be increasing
each year.
For SSI recipients, SSA does not count the first $20 per month or the first
$65 of earned income per month in determining how much of the benefit check to
reduce by earnings. Under Section 1619(a) SSA also disregards one-half of all
additional earnings. SSA does not count food stamps, items donated by non-profit
organizations, and most home energy assistance. SSA also does not count medical
expenses someone needs to be able to work, including maintenance medications
and a home dialysis assistant. For those who are blind, SSA does not count expenses
that they need to allow them to work and deducts from earnings as blind work
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expenses income taxes paid, meals during work hours, costs of transportation, and
expenses for a guide dog. VR clients that have SSI can keep Medicaid benefits under
Section 1619(b) if they earn more than the state’s Medicaid guidelines even if they
no longer receive SSI cash benefits. The most recent 1619(b) state Medicaid limits
can be found at www.ssa.gov/work/ResourcesToolkit/Health/1619b.html. SSA can
provide current information on the 1619(b) earnings limit for Medicaid. A map that
shows states that have implemented flexible standards for Medicaid eligibility can
be found at www.hcfa.gov/medicaid/twwiia/statemap.htm.
Disabled students under 22 can now earn up to $1,290 per month or
$5,200 per year without jeopardizing their SSI cash benefits. This should make it
easier for young people to work part-time or temporary jobs to help pay
educational expenses. These amounts are linked to the national wage index and
will be increasing each year.
If clients with kidney disease have chosen in the past not to work because
they believe they would have to wait for disability to start again if they have a
health setback, the TWWIIA should alleviate this concern. The TTWWIIA
offers expedited reinstatement (“easy back on” safety net) for disability benefits
with no waiting period for those who develop health problems within 60 months
after losing disability benefits. Clients can submit a one-page form to resume
benefits. Benefits start right away for six months while SSA determines a client’s
eligibility. If SSA finds the client to be not disabled, he or she will not need to
refund these provisional benefits.
Finally, transplant recipients may be especially interested in working with
VR because if SSA reviews their disability status, they may be found no longer
disabled if they no longer need dialysis. Under the recovery during vocational
rehabilitation work incentive, SSA may continue disability benefits as long as a
client is in an approved VR program, even if he or she is considered medically
improved following transplantation.
If the client needs to do a CAPD exchange during work hours what kind of
accommodation might he/she need?
Most clients who do CCPD do not need to do dialysis exchanges during
the day. However, some must perform at least one CAPD exchange during a
workday to get enough dialysis. To do a CAPD exchange, clients need a clean
room and about 30-40 minutes of privacy to do the dialysis procedure. Prior to
requesting this accommodation, your client will need to think about when he or
she will make up the work time lost while performing the exchange.
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Can applicants choose another type of dialysis if this would help them
achieve their vocational goals?
Clients with kidney failure often have choices of treatment options.
However, not every dialysis facility offers all modalities nor is it always
medically advisable for every client to change. In addition, clients might not
realize that they have a choice and may not know what clinics offer other
options. It is reasonable for the VR counselor to ask how the choice of
treatment was made and recommend that clients speak to their physician if
changing modalities improves the chance that they can work successfully. The
ESRD Network can advise the VR counselor and the client what treatments are
offered by clinics in his/her area.
Can applicants choose a different time of day for dialysis if this would help
them achieve their vocational goals?
Clients that are on in-center hemodialysis can ask for a different shift
time. However, it may not be possible to change immediately if either the dialysis
facility is full or if the preferred shift is full. The client should ask the nurse
manager or administrator at the dialysis facility to write his or her request in a safe
place as a reminder and the client should note who they asked and when.
Sometimes someone else at the dialysis clinic will be willing to switch times but
this is more likely if the switch is only temporary, such as for a vocational
evaluation or a brief training. Clients often prefer their usual dialysis shift because
they have gotten to know the other people on that shift and staff members. This
makes some clients reluctant to change.
The VR counselor should remind applicants who are working and need
to take medical leave to adjust to treatment, time off for all or part of a dialysis
treatment, or to go to medical appointments that they may qualify for the Family
and Medical Leave Act (FMLA). Under this law, they could take time off in
increments as short as 15 minutes. This may help if they have to leave work early
or get to work late because of dialysis or medical appointments. Of course, it is
best for the employer and co-workers if the client negotiates a flextime schedule
and completes job responsibilities in spite of taking time off. Although the FMLA
requires notice whenever possible, it can help those who may be hospitalized
without notice for access surgery, transplantation, or other illnesses. For more
information on the FMLA, see the Directory of Resources section.
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Can clients transfer to other dialysis facilities, such as one with an evening
dialysis shift if this would help them achieve their vocational goals?
Clients that need dialysis are referred to dialysis facilities by their
nephrologists. They usually have the choice of where to dialyze (unless their
insurance limits this), but they may be reluctant to change facilities if it means
they would have to find a new nephrologist. For those whose nephrologists are
affiliated with several facilities, changing facilities is easier.
What if the client receives a transplant during delivery of services?
Depending upon the stage of the VR program that a client has reached, he
or she can interrupt services for medical reasons and resume a program with
clearance from the doctor and/or the medical team. For a client who is considering
training, it is important to discuss with the training institution and financial aid
department what the impact on training might be if there is a medical interruption.
This should be done before selection of the training institution.
Can a client change his/her schedule for vocational evaluation or training
program?
Whether a client with kidney disease needs a different schedule for
evaluation or training depends on the flexibility of the client, the evaluation unit
or training program, and the dialysis facility. Since a vocational evaluation is
usually time limited, a dialysis schedule change can be avoided by arranging for
the client to attend the evaluation on his or her non dialysis days. The evaluation
might need to be extended to make up the missed days. In some instances,
vocational evaluation is scheduled at an evaluation unit outside the client’s local
community. In these cases, the home dialysis facility can generally arrange
transient (temporary) dialysis close to the site where the evaluation is scheduled
if enough notice is provided.
For a client to participate in training programs, it might be necessary to
change his/her dialysis schedule. However, depending on someone’s interest,
training options can be flexible. Although many dialysis facilities will change the
schedule for those who work or are in school, unless someone else is willing to
switch shift times with the client, unless training time is brief, this option may be
best utilized when the client gets a job.
Who are the key contact people in the dialysis or transplant facility that can
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address questions specific to providing optimal vocational services?
As previously mentioned, the renal social worker is the main contact for the
VR counselor with regards to providing vocational services to people with CKD.
Contact the physician and/or the physician assistant for medical
information, functional capacities, physical accommodations, and release to work.
Because people with kidney disease are seen frequently, medical information VR
counselors receive from the nephrologist should be recent. The social worker can
often help assure that medical information is returned faster.
The nurse manager is also available to augment medical information
provided by the physician. Additionally, she or he is usually in charge of
scheduling. Contact the nurse manager if a change is needed to accommodate
evaluation, training, and/or work.
The renal dietitian plays an important role in helping clients adhere to
their renal diets. This is imperative to maintain their health and stamina. If a
client reports fatigue, weakness, or poor stamina contact the dietitian to find out
if dietary non-adherence could be affecting the client’s ability to work.
The dialysis technicians probably have the most contact with clients during
their dialysis treatment. If they know that a client is receiving VR services,
technicians can offer support and encouragement to clients throughout the
rehabilitation process.
Some dialysis facilities and transplant centers or organizations like the
NKF or AAKP have support groups or peer helpers. You should encourage your
clients with kidney disease to explore what is available at their facility and in
their community.
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The Client With CKD And Blindness (Case Study)
She is 46 years old and the first-born girl with 6 siblings. She was 9 when
she was hospitalized and first diagnosed with juvenile diabetes. She recalls times
when she may have done things to be hospitalized to get attention and has
memories of her parents talking about how “costly” she was.
When she was 23 she experienced her first complication of diabetes —
fluctuating vision. She needed laser treatments for diabetic retinopathy. By 1980
she was legally blind. Desiring independence, she moved from her family’s home
into an apartment and began working as a waitress and than as a nurse’s aide.
Busy, she did not manage her diabetes as she had been trained to do.
In 1983 she sought help from the Texas Commission for the Blind. The
vocational teacher and I helped her identify settings on home appliances to make
her home accessible, provided adaptive aids and training on a talking watch,
talking alarm clock, large button telephone, and large print checking ledgers. I
asked a diabetes educator to evaluate her understanding of her disease. My client
learned diabetes management skills and the educator recommended a talking
glucose and blood pressure monitor to help her better manage her diabetes and
blood pressure.
She attended the Criss Cole Rehabilitation Center in Austin TX, where
she had a low vision evaluation and learned skills she would need to become more
independent in daily living and to gain competence needed to retain her
successful employment. What she learned included Braille, travel skills, computer
keyboarding and computer adaptive technology with speech and large print to
keep her medical records and financial records, use of the audio cassette recorder,
money management, telephone usage, organizational, time management, and
note-taking skills. She also learned kitchen safety skills and how to use adaptive
in food preparation and diabetes meal planning, housekeeping, laundry, minor
mending, clothing coordination and labeling.
In 1987 she became a housewife and mother and worked part time at a
clothing store and as a Mary Kay Cosmetics representative. In 1988 her kidneys
failed and she began in-center hemodialysis. Dialysis was taxing and she had to
depend on close friends to provide day care for her son while her husband
continued working and she was at dialysis.
In 1989 she received her first transplant but it failed two years later. In
addition to kidney failure and high blood pressure, she now had carpal tunnel
syndrome and osteoporosis. After the transplant failed, she tried peritoneal
dialysis, but complications led to her return to hemodialysis. She changed dialysis
schedule to an evening shift so she could have her days free and she could sleep
to recuperate from dialysis. Despite her three times a week dialysis schedule, she
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continued to take care of her home, do yard work, build decks, paint and sing with
her husband in church, and she and her husband recorded original music.
In 1996 she sought evaluation for a kidney-pancreas transplant. While
waiting, she continued her homemaking responsibilities, home schooled her
son, and took on the responsibility of caring for her brother and elderly father.
In September 1999, she received a successful kidney pancreas transplant. High
dose prednisone for a rejection episode caused a cataract that required a couple
of eye surgeries.
Today, she continues to home school her son who is in 8th grade. She is
a successful homemaker and home decorator. She continues to struggle and
overcome limitations that would have limited less motivated people with similar
circumstances. She is fully engaging in and enjoying all aspects of life. She is
happy to be alive and is successful because of her independence, motivation,
strong family support, faith, and help that VR was able to provide.
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The Client With CKD And English As A Second Language: A Client’s
Perspective (Case Study)
In a blink of an eye, my life changed when I found out in 1994, at the age
of 26, that I had kidney failure. After working my shift on Thursday, I came home
and fell asleep. I awoke an hour later with a fever and in increasing pain. I tried
to manage the fever and pain with over-the counter medications, but by Sunday
I knew I needed help. I asked my ex-husband to take me to the emergency room.
I spent the next 27 days in the hospital.
The doctors ran all kinds of tests and determined that I needed dialysis.
Because of my health, age, and because I was a single mother with a young
daughter, the doctor recommended that I learn to do peritoneal dialysis and
referred me to a local dialysis clinic.
At my new clinic I met my new doctor, the nurse who would train me, and
the social worker. In addition to helping me with insurance and medications, my
social worker helped me look at life in other, more positive ways. She told me that
I had another opportunity in life and I should try to do my best by following the
doctor’s orders. She mentioned that I could go back to school and prepare for a
better future. She arranged an appointment with VR.
I cannot thank my VR counselor enough for all he did for me. He asked
me questions about what I liked and didn’t like, what I could and couldn’t do, and
gave me emotional support when I needed it. He tried to get me into an
information technology program at ITT, but they didn’t accept me because I
didn’t speak English well – my native language is Spanish. My VR counselor
didn’t give up and continued to encourage me.
In 1995, I was evaluated for a cadaver transplant. Although I thought I’d
accepted my condition, the psychological testing revealed that I was depressed and
I was rejected for a transplant. The transplant team recommended that I receive
counseling. Because of my daughter, I decided to follow their recommendation.
After a year of counseling, I was reevaluated and accepted for transplant. My
younger sister came from Puerto Rico to be evaluated as my donor and passed all
the tests. The transplant was scheduled for the following February.
Throughout, I kept in touch with my VR counselor. I told him I wanted
to take English as a Second Language courses. I took courses in the Fall of 1995
and decided to layoff the winter quarter when my transplant was scheduled. Before
my sister had to give me her kidney, I got the call that a cadaver kidney had been
found. I had worried about taking my sister’s kidney so I chose to have the cadaver
transplant. I had my transplant in January, 1996.
I had most of the side effects of medications – round face, hand tremors,
I grew hair everywhere – and I felt like I was looking at someone else in the
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mirror. Although I didn’t like it, I understood that I needed to adapt. I decided to
take control and began to exercise to keep my weight down and removed the
excess hair by waxing.
In the spring quarter, I returned to my ESL course. My VR counselor told
me about the NKF of Georgia’s Springboard program that brings together those
on dialysis and with transplants to share experiences and gain skills needed to reenter
the world of work. The director of the program, Chuck Brown, is a
transplant recipient and a special man. The program helped us recognize that we
were not alone and that we could live normal lives. I graduated from Springboard
and with high marks from my ESL classes.
My VR counselor recommended additional training to expand my
opportunities. He again recommended me again for the information technology
program at ITT and this time, I was accepted. After six months, I received a
certificate of completion in computer literacy and word processing and a certificate
in database management. I also received an award for outstanding attendance. ITT
helped me look for jobs and prepare for interviews.
I found a job as a dispute analyst/information consultant for a large
credit company. I began training at my new job and continued to receive
training at ITT. The hours were long – classes at ITT from 8 a.m. to noon and
work from 1:00 p.m. to 10:00 p.m. I wasn’t able to keep the job because of
insurance. However, I felt proud that I had the skills I needed to get and hold a
good job. My ITT instructors were proud of me too and selected me as the star
student in my class.
However, I knew I wanted to do something else. Being ill myself, I knew
I wanted to work in a job where I could relate to other ill people. Today, with help
from VR, I am studying in the School of Radiologic Technology at Grady
Memorial Hospital. Over the 2 years I have been in the program, I have had
excellent attendance and have maintained an A average, one of the highest in the
class. I will graduate this summer as a radiologic technologist.
I have had my ups and downs because life is not easy. I have new
opportunities and do not want to waste more time. I want my daughter and
parents to be proud of me and I don’t want people to feel sorry for me. I know in
my heart and in my head that I am a strong woman. Only God and I know what
I have been through and I am very happy to see how far I’ve come. I’m doing what
I like and people see me as useful. I live day-by-day and have always said that
whatever God wants that is what will be. As for my future, I just applied in the
School of Ultrasound at Grady. I will find out the middle of June if I am accepted.
The world is full of opportunities and with God’s will everybody chooses their
own road. I give thanks to God and to all the wonderful people that believed in
and helped me achieve my success.
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65 4Chapter Four
Job Development,
Job Placement, Job Retention
What medical benefits do clients on dialysis retain once they start work?
If clients are on dialysis, they keep Medicare indefinitely as long as they
pay premiums, even if they work. Although Medicare coverage is secondary
indefinitely for workers with other disabilities, for those with kidney failure,
employer group health plans are only responsible for primary coverage during the
first 30 months they are eligible for Medicare. Therefore, if a client becomes
employed during the first 30 months of Medicare entitlement, the employer
group health plan would only be required to pay primary for the remaining
months of the coordination period. If the client becomes employed after the first
30 months of Medicare entitlement, Medicare would pay primary and the
employer group health plan would pay secondary.
Even though they have indefinite Medicare coverage while on dialysis,
those dialysis clients who have other disabilities and are considering a transplant
need to know that the months they work on dialysis can reduce the 8.5 years of
Medicare they are entitled to under the Ticket to Work and Work Incentives
Improvement Act (TTWWIIA). If they later get a transplant and still are
considered disabled, they should ask Social Security how many months of
Medicare entitlement they have left.
What medical benefits do clients with a transplant retain once they start
work?
Employer group health plans are required to pay primary benefits for
clients with transplants for the first 30 months of Medicare entitlement. If a client
with a transplant did not work for part of the coordination period, the employer
group health plan would only be responsible for primary benefits for the
remaining months of the 30-month coordination period.
Unless clients with transplants have other disabilities besides kidney
failure, they lose Medicare coverage three years after their kidney transplant.
Clients with transplants who are physically able to work and only eligible for
Medicare because of kidney failure need to obtain employment with health
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Job Development,
Job Placement, Job Retention
insurance coverage during the first three years post-transplant, if possible. It may
help them to know that they will be eligible for Medicare again if they need to
resume dialysis or if they qualify for Medicare due to age or disability.
If transplant clients have other disabilities, under the TTWWIIA they can
keep Medicare for 8.5 years from the date work starts. Medicare pays a portion of
all Medicare covered inpatient and outpatient services, including anti-rejection
medications as long as clients with kidney disease have Medicare.
What can a VR counselor do to help those with kidney disease who still
have disability or health benefits through a former employer?
Those who are insured through former employers’ disability or group
health plans may risk even more if returning to work leads to termination of
disability and insurance benefits. It is important to ask what health and disability
benefits, if any, your clients receive from their former employers and whether
there is a possibility that they could return to any position with the former
employer. VR counselors can help these clients by referring them to potential
employers whose salaries are sufficient to offset disability benefits and whose
health benefits cover most of the costs of medical care.
How much does a client need to disclose about chronic kidney disease
(CKD) to a potential or current employer or supervisor?
Clients with kidney disease need to understand that they do not need to
disclose the nature of their disability. The timing of when they disclose facts
about their kidney condition is up to them. Failure to disclose a disability at hiring
does not preclude their right to ask for reasonable accommodation later.
The Americans with Disabilities Act (ADA) (see Directory of Resources)
permits a prospective employer to ask if any reasonable accommodations are
necessary to perform the job for which the client is interviewed, but not to ask the
nature of the disability. If a potential employer requires all applicants for a
position to have drug testing, a client on dialysis may need to offer a blood sample
for testing instead of a urine sample.
All potential employees must be able to perform the essential functions of
the job, including those with kidney disease. If dialysis or transplant clients
believe they can do the essential job functions but need an accommodation to do
so, they should request the accommodation as soon as they know they need it.
Clients and employers can negotiate reasonable accommodations.
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Some accommodations that have been granted include:
• Flextime for dialysis or to keep medical appointments
• Privacy to perform peritoneal dialysis exchanges
• More frequent breaks to conserve energy
In considering hiring someone who has a disability, the employer’s major
concerns are getting the tasks done, maintaining the morale of staff, and not
having to spend a lot of money on accommodations. VR counselors know how to
address employers’ concerns and uphold clients’ confidentiality and privacy
rights. It may help an employer to know that in general those on dialysis do not
miss more work than other employees,4 they may not need accommodation at all,
and if they do, accommodations they need are generally inexpensive. Clients who
have kidney disease are first and foremost prospective employees, not merely
people with a chronic disease.
How can the VR counselor encourage job retention for people with CKD?
As stated in Chapter 3, the VR counselor can be invaluable in developing
a proactive plan that enhances communication between the client, employer, VR
counselor, and healthcare providers. For employed clients with kidney disease,
the key to keeping them on the job is to develop a plan with the client, the
employer, and the treatment team to address issues that might threaten the job
situation. For those on dialysis, there might be scheduling issues, hospitalizations
and changes in physical abilities. For clients pursuing transplant, there would
need to be time off for the actual transplant, adjustment to any medications and
complications that might arise. For those with a functioning transplant, there will
be need for occasional clinic appointments.
If someone’s work abilities change and he or she can no longer perform
the essential functions of the job, the VR counselor can assist the client and the
employer in determining if a different position within the company can be
identified or what accommodation might be needed. If a job change is required,
the VR counselor can assist in the transition and possibly augment any additional
training that might be required.
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4 Friedman N, Rogers TF: Dialysis and the world of work. Contemp Dial and Nephrol
9(1):16,18-19, 1988.
Who can provide detailed information regarding whether a position is
within the client’s functional abilities?
The nephrologist and the dialysis unit are key partners that can provide
information related to your client’s ability to begin training or work. The physician
can provide the client medical clearance. The VR counselor needs to work closely
with the dialysis facility or transplant center in the development of the physical and
scheduling accommodations needed by this population.
What kinds of jobs should a client with CKD avoid?
Clients with CKD can do any kind of work for which they have the skills.
Kidney disease per se does not limit career choices. As long as clients with kidney
disease have health insurance or sufficient salary to pay medical expenses and are
able to have some reasonable accommodations for their therapy, they are not
limited in their career choices.
What kinds of environmental conditions should someone with CKD avoid?
Clients on hemodialysis who have either fistulas or grafts in their arms or
thighs have small scabs or scars where needles have been inserted for
hemodialysis. Some clients on hemodialysis may have closed catheters placed in
their chest or neck temporarily while the dialysis fistula or graft in their arm or
thigh heals. Clients on peritoneal dialysis have a closed catheter that is
permanently placed in their abdomen and hidden under their clothes.
It is important that dialysis clients avoid working in any conditions where
bacteria might compromise the hemodialysis or peritoneal dialysis access site.
However people on dialysis can farm or garden and work with many chemicals.
People on dialysis may be more susceptible to illness because they have poor
immune system response. Some doctors recommend avoiding environments
where they might be exposed to illnesses. However, most doctors place few
restrictions on people on dialysis because they believe these clients should
maintain normal routine if possible. If dialysis or transplant clients have hepatitis
B or C or AIDS, they could be restricted from certain jobs as would any other VR
clients with these diseases.
Clients with kidney transplants take immunosuppressant medications to
lessen the chance of rejection. These medications further reduce their body’s
ability to fight off infection. Therefore, they should avoid jobs that present a high
risk for infection soon after receiving the transplant. Later, as the dosage of these
medications is reduced, the risk of infection subsides and their doctor may lift
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some restrictions. A client with a transplant should avoid exposure to those
chemicals that could be nephrotoxic (harmful to the kidney) to protect their
transplanted kidney.
Can someone with CKD work a 40-hour week?
Many clients may find it difficult to work a 40-hour week as kidney
disease gets progressively worse before treatment is needed. Although this
varies, as kidney function deteriorates, they may feel tired and generally run
down. After they adjust to their dialysis treatment or recover from a transplant,
they will be more likely to be able to work a 40-hour week. Clients who do
hemodialysis at a dialysis center will need to schedule hemodialysis around work,
which may be difficult because of the time involved unless the dialysis facility
offers flexible or evening scheduling. Home hemodialysis or peritoneal dialysis
will present few or no barriers. After a transplant, there should be no barriers to
working a 40-hour week.
Can someone with CKD work an 8-hour day?
After clients with kidney disease begin and adjust to treatment, many
can work an 8-hour day. If clients on in-center hemodialysis are concerned
about working 8-hour days with dialysis, they should arrange their dialysis and
work schedule so they can do their full dialysis treatment before or after work
or work 8-hour days on the days they do not receive dialysis. Some dialysis
facilities offer evening dialysis and many jobs offer flex-time or shifts when
dialysis facilities are closed. For those clients that do home hemodialysis,
peritoneal dialysis, or those who have kidney transplants, there should be no
barriers to working an 8-hour day.
Can someone with CKD work overtime?
People on hemodialysis or peritoneal dialysis can work overtime if it is
scheduled in advance. In-center hemodialysis is less flexible than home
hemodialysis or peritoneal dialysis although each form of dialysis requires getting
a certain amount of dialysis per day or per week to assure adequate removal of
toxins (wastes). It is possible for someone to work overtime as long as notice is
given in time to schedule dialysis. After a transplant, there should be no barriers
to working overtime.
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Can people with CKD travel as a function of their job?
Local travel poses no restrictions providing the dialysis schedule is
maintained. If out of town travel is required day trips generally do not require
scheduling dialysis at a destination. However, for longer trips, hemodialysis can
often be scheduled in or near the destination city as long as the client’s health
insurance pays for out-of-area dialysis. Medicare pays for dialysis anywhere in the
U.S. Managed care plans may not pay for dialysis out of network so clients with
managed care coverage will need to clarify their insurance coverage.
Although in-center hemodialysis usually requires 1-2 months notice or
longer to plan, if there is an urgent need for travel, dialysis personnel in many
areas will do their best to accommodate clients needs. If clients on hemodialysis
regularly need to travel for work to specific locations, it may be possible to make
standing reservations at one or more dialysis facilities. Clients on peritoneal
dialysis can carry supplies for a day or two in a car or on an airplane. Those on
CCPD can either take a portable cycler and supplies on a trip or do CAPD while
out of town. For longer trips, clients on peritoneal dialysis can order supplies
delivered to their destination hotel or office. Clients on dialysis who are on a
transplant list must notify the transplant facility how to reach them if they will be
out of town. Transplant recipients can travel with no restrictions but must
remember to follow their medication regimen closely.
A number of publications and websites offer information about dialysis
facilities throughout the world and travel options for people on dialysis. Some
of these include “The List” that appears annually in Dialysis and Transplantation
and websites: www.dialysisfinder.com (U.S. dialysis facilities) and
www.globaldialysis.com (includes international dialysis facilities). Clients can
look for specific U.S. dialysis facilities and their outcomes on Dialysis Facility
Compare (see Directory of Resources). Clients who have to travel for their job
need to be aware that clinical practices and conditions vary, which is especially
true outside the United States.
What happens if work interferes with treatments?
For those on dialysis, treatments take priority over work because without
adequate treatment, he or she will not feel well enough to be a good employee.
Clients should make every effort to go to hemodialysis at their regularly
scheduled time. It is difficult to reschedule and important that people on dialysis
get the prescribed number of hours of dialysis per week. Work probably will not
interfere with home hemodialysis or peritoneal dialysis. Home hemodialysis
clients can adjust their dialysis time and/or days each week as needed. As long as
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your peritoneal dialysis clients have the opportunity to do the fluid exchanges,
they will stay healthy. Clients on CAPD only need 20 to 40 minutes to complete
a fluid exchange every 3 to 4 hours or usually only one exchange at work each day.
Clients on CCPD need a continuous period of 8 to 10 hours of dialysis while they
are sleeping but may need to do one CAPD exchange during the workday to get
enough dialysis. Clients on home dialysis need time off from work to attend
regular clinic appointments.
After a transplant, the only way treatment would interfere with work
would be if the client has a rejection episode and needs to go to the doctor or be
hospitalized for a few days to change medications and stop rejection. If the
transplant rejects, the client may need time off to resume dialysis and physically
adjust to it.
What needs to be taken into consideration when setting up a job interview?
The VR counselor needs to be aware of the client’s dialysis schedule and
either schedule job interviews on non-dialysis days or before or after dialysis. In
addition, interviews should be scheduled when the client is typically at his or her
best physically. Clients on dialysis should be able to tell you whether they
generally feel better before or after dialysis.
Who can assist in identifying and implementing job accommodations?
Planning job accommodations requires a team effort. The treatment
facility can identify the medical implications of the job duties; the employer can
identify the available options; and the client and VR counselor can identify the
best course of action. Because of the amount of time clients with CKD spend on
dialysis, a common job accommodation is a scheduling accommodation. This
can best be addressed in partnership with the employer and the dialysis unit. If a
client needs to change his or her dialysis schedule in order to obtain and/or
maintain employment, the dialysis facility social worker can be enlisted to
advocate on the client’s behalf. In addition, the medical director and/or unit
administrator or nurse manager will also be able to assist the VR counselor in
making the necessary schedule changes. For clients who need to come in late or
leave work early for in-center hemodialysis, the VR counselor, the client, and the
employer must address how to make up the time. Since commercial insurance
pays more for dialysis during the first 30 months of Medicare entitlement, the
VR counselor or client might be able to use a job that provides health insurance
as a bargaining tool with dialysis facility administration when asking for a change
in the client’s dialysis schedule.
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Clients on home dialysis will need to go to the clinic for monthly
appointments and if they have a problem. Clients can either make up this time or
take sick time for clinic appointments. The VR counselor, the employer, and the
client on CAPD must develop a schedule that allows the client to complete a
CAPD exchange and to determine when the missed time will be made up. In
addition it is important to realize that the client needs a clean room and privacy
for this dialysis exchange. Physical accommodations for a particular job can be
accomplished in partnership with the employer. After the physician and client
identify all physical limitations, the VR counselor can consult with a physical
and/or occupational therapist, assistive technology specialist, and rehabilitationengineering
specialist to identify options.
How can the VR counselor enhance the dialysis client’s chances of being
successful in those critical first few weeks on a new job?
Notify the unit social worker and the treatment team that the client will
be starting a new job. Initiate a case conference with the client and key members
of treatment team to discuss job requirements and encourage optimal compliance
with the client’s medical regime. If clients on dialysis are successful in managing
their care and continue to receive adequate dialysis, they will better be able to
meet the demands of the job.
What natural helpers can VR counselors use with people with kidney
disease?
The VR counselor can encourage clients with kidney failure to seek out
others with kidney disease who are well adjusted and employed. With help from
local dialysis and transplant facilities, the AAKP chapter, the NKF affiliate, and
Network, VR counselors could establish a group for people with kidney disease.
Including working people with kidney disease allows them to serve as role models
and peer helpers, sources of motivation, and dispellers of fears and myths for those
with kidney disease who are looking for employment. Also, if problems arise on the
job, they can seek support and encouragement from other members of the group.
Can employer based training programs be an effective placement tool?
A variety of employer based training programs exist such as on the job
training, work trials, work study, and internships. These programs can provide
financial and counseling support to the employer while the client adjusts to work
and learns the skills to perform the job. They address the physical deconditioning
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that may have occurred during a long period of physical inactivity. These
programs can provide an opening for the VR counselor and client to educate the
employer about kidney disease. They can also be used as a means to persuade
employers to provide clients with kidney disease the opportunity to demonstrate
that they can do the job.
Summer employment, work trials, and internships can provide valuable
work experience and orientation to adolescents. They also help show adolescents
and their parents that work is possible with dialysis or a transplant.
What transportation services can dialysis clients use to get to and from work?
People with CKD experience the same transportation issues as any other
clients. Under Title II of the ADA, all buses and trains ordered by public
transportation systems since 1990 are required to be accessible to people with
disabilities. All transit systems have to provide paratransit and other special
transportation for people who can’t use public transportation. The ADA requires
transit systems to provide a level of paratransit service that is comparable to the
level of regular transit service for those with disabilities and whose transportation
needs fit specific criteria. Federal law prohibits the provider from picking up a
rider more than one hour before or after the requested time or charging more
than twice the rate charged for fixed route service. Many metropolitan areas are
far ahead in providing this service at a reduced rate or free. Application for use of
the service is necessary, subscription trips can be scheduled for any purpose, and
while some clients may not qualify for paratransit services, they may qualify for
reduced fares for the mass transit system.
In rural areas with limited public transportation systems, getting to the
job poses a major barrier to employment. Medicaid transportation, which takes
clients to dialysis clinics, is not available to take clients to jobs — unless the client
goes to dialysis to or from the job. Innovation in arranging transportation is
required to ensure regular job attendance that will ensure job retention. Car
pooling in remote areas is also feasible. Companies may provide van service for
all employees if they are located far from public transportation.
Research has shown that transportation is a barrier to work for one-third
of those with disabilities. Therefore, the Project ACTION Accessible Travelers
Database (see Directory of Resources) was established as a cooperative effort
between Easter Seals, the U.S. Department of Transportation, and the Federal
Transit Administration. This database includes transportation resources for
people with disabilities living in urban and rural communities. Knowing what
transportation resources exist should increase opportunities for employment for
people with disabilities.
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Negotiating A Dialysis Accommodation (Case Study)
Mr. M. is a 45 year old male with chronic kidney disease. He was on
hemodialysis for about three years, but recently switched to continuous ambulatory
peritoneal dialysis (CAPD). Mr. M. felt that his strength and energy were greatly
improved with CAPD and he decided to return to work.
Mr. M. was referred to State VR by his dialysis unit social worker. When
he met with the VR counselor, Mr. M. expressed a desire to return to work as soon
as possible. He was not interested in training. With the assistance of the VR
counselor, Mr. M. found a job as a driver for a home health agency. His position
required him to drive home health aides and cleaners to their positions throughout
the city.
At the time he was hired, Mr. M. felt that he would be able to handle this
position and do at least one CAPD exchange during work hours. His exchange
usually took about 30-40 minutes. Initially Mr. M. was reluctant to tell his
employer about his medical needs and he would drive home during lunch to do
his exchange. This became increasingly difficult because of the long drive and
time required to do the exchange. Mr. M. told the VR counselor he was afraid he
might lose his position.
The VR counselor and Mr. M. met with the employer and explained Mr.
M’s need to do a CAPD exchange in a clean environment closer to work. The VR
counselor gave the employer an informational brochure describing CAPD. The
employer was forthcoming. She recommended that Mr. M. do his exchange in one
of the agency’s training rooms. The client, the VR counselor, and the employer
accepted this as a reasonable accommodation that not only allowed Mr. M. to
continue his job, but allowed his employer to keep a valued employee.
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The Client With CKD And Hearing Loss: A Client’s Perspective
(Case Study)
I am 42 years old and have had chronic kidney disease since 1965 when I
was 7 and diagnosed with kidney problems due to Alport Syndrome. There was
no education for my parents or me to help us cope with kidney disease. When I
was 12, my hearing started to fail. When I was 16, I developed acute kidney failure
following a strep throat infection and had to start hemodialysis. I missed three
days of school each week because I had to drive myself 75 miles to the nearest
dialysis unit. I did schoolwork while on dialysis and on weekends and I graduated
with my class without tutors or other assistance. After three months, my kidneys
began to function enough for me to stay off dialysis for the next two years.
I started college, but my kidneys failed again permanently this time and I
had to go back on hemodialysis. I wasn’t able to finish college because of my
health so I asked the Texas Rehabilitation Commission for help to go to heating
and air conditioning school. My doctor gave TRC information about my health
and my VR counselor evaluated me. After a couple of months I received financial
help with tuition, mileage, and living expenses. I completed trade school, found a
job, and started working. Unfortunately, a few months later, I found this job was
too strenuous so I returned the air conditioning tools VR had bought and found
a different job. I worked at a variety of jobs including working for a time as a
dialysis technician.
When my family moved to Kansas, I didn’t realize that VR could help me
so I started college on my own but had to drop out again because of a health
setback. Later, I learned I did qualify for VR help and Kansas VR helped me
complete my degree in business administration. I got a job in an insurance
company, but another health setback return to disability.
My family moved back in Texas. After two failed kidney transplants and
two years on disability, I asked TRC to help me get a 2 year degree in
computers. This time, Texas Rehabilitation Commission’s evaluation was more
stringent. The VR counselor wanted to be sure I was motivated and
responsible. I heard her message , finished the program, and got a job with a
federal agency in Kansas City.
Even though I was living in Kansas, the TRC counselor kept in regular
contact with me and my employer for the next five 5 years. At her last contact she
reminded me that my salary had doubled since I was first hired by the federal
agency and she told me she would put this in my case record. Since I’ve lived in
Kansas, VR has purchased two sets of hearing aids as my hearing has gotten
worse. These have allowed me to further my career as a systems analyst.
If I could say anything to a VR counselor it would be people with kidney
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disease may have health setbacks that make them postpone a goal, but the
motivated ones get back on track. I appreciated my VR counselor who had faith
in me and helped me see I could be responsible and complete what I started. I
would not be where I am today if it wasn’t for Vocational Rehabilitation.
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79 5Chapter Five
Where Can I Go For More Help?
Where might I go to get a more general understanding of kidney disease
and how it affects rehabilitation outcomes?
Educational materials on all aspects of chronic kidney disease (CKD),
including rehabilitation, are available through national organizations such as the
American Association of Kidney Patients (AAKP), the Life Options Rehabilitation
Program, the National Kidney Foundation (NKF), and Networks. In addition, the
International Center for the Disabled (ICD) has conducted research and
developed training materials specifically for this population. For more information
on these programs see the Directory of Resources.
Those with CKD may also have other diagnoses that will have an impact
on their rehabilitation. They may have a current or past history or substance abuse
which can be addressed with their substance abuse counselor or aftercare program.
A large percentage of people with CKD also have diabetes and/or hypertension.
Diabetes education programs and hypertension education programs are available
to provide the VR counselor with relevant information.
Who can VR specialists turn to for help in providing meaningful services to
people with CKD?
Resources are grouped into four major categories: dialysis and treatment
facilities, governmental agencies, kidney-related organizations, and family and
friends. Providing services to those with CKD requires a team approach to
coordinate the delivery of highly specialized service components. There is a
strong medical overlay to required services, because people with kidney disease
require continuing medical care for life. A vast reservoir of resources can help
both the VR counselor and those with kidney disease understand all of the issues
surrounding this chronic illness and effectively building a successful rehabilitation
plan. Success depends upon knowing about these resources and accessing any
support these groups and organizations can offer as timely as possible.
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Where Can I Go For More Help?
How can family and friends help promote vocational rehabilitation for
clients with CKD?
Family, close friends, extended family, and teachers can be a source of
supplemental information regarding physical and emotional issues that the client
is experiencing due to dialysis or transplant. They can inform the VR counselor
about the client’s emotional status, level of motivation, and fears. They can
advocate for the client in the rehabilitation process. Once the client has started
dialysis or received a transplant, support groups can be a source of information.
Confidentiality must be maintained.
Family members experience grief and loss related to their loved one’s
kidney disease. Often caregiver support groups can be helpful. Some facilities or
organizations offer caregiver support groups and there are a number of online
support groups for caregivers of those with kidney disease.
How can dialysis and transplant facilities help?
Both dialysis and transplant facilities have information on innovations in
medical care and equipment, pharmaceuticals, and treatment options that can
enhance the client’s ability to effectively participate in a rehabilitation program.
Staff at the treatment facility can provide critical information concerning the
appropriateness of a vocational objective. Medicare regulations5 mandate that
dialysis facilities, whenever feasible, accommodate those who are working and
want to dialyze during non-work hours, consider the functional needs of those
with kidney failure in care planning, and monitor progress toward the goals
regularly. If those on dialysis or with transplants notify the healthcare team that
treatment or side effects of medications affect their ability to work it may be
possible to make changes to improve their work ability. Information about
facilities is available:
• Dialysis Facility Compare (see Directory of Resources) provides
information on dialysis facility locations, hours, contact information,
and outcomes.
• The United Network for Organ Sharing (UNOS) website (see
Directory of Resources) offers information about transplant programs,
number of transplants performed, wait list times, and success rates.
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5 42CFR405 Subpart U, Conditions for Coverage of Suppliers of End Stage Renal Disease
(ESRD) Services
Medicare regulations require dialysis and transplant facilities have the
following personnel:
• Social workers in dialysis and transplant programs are mandated by
federal regulation to have masters degrees in social work with clinical
specialization from an accredited social work program. Social workers
assess psychosocial adjustment to kidney failure, provide counseling
for the individual and his/her family, and promote vocational goal
setting, provide information about resources, and participate in
multidisciplinary care planning. Social workers are usually the point of
reference for referrals to VR providers and they help those on dialysis
plan dialysis in other locations.
• Medical director and/or client’s primary nephrologist educates the client
about treatment options, prescribes treatment to promote the highest
level of health, and can advocate with the nephrologist and clinic to
promote schedule changes to accommodate evaluation, schooling, or
work. Nephrologists’ expectations have the greatest influence on
whether clients work.6
• Unit administrator or nurse manager assigns dialysis shifts, assures that
the nephrologist’s treatment orders are followed, makes sure that
medical records are transferred as appropriate, arranges and changes
dialysis schedules, and assures that personnel are qualified, well
trained, and provide quality care.
• Dialysis nurses and technicians deliver dialysis care according to the
nephrologist’s orders. Nurses and technicians’ attitudes can help or
hinder clients’ vocational rehabilitation pursuits and outcomes.
• The renal dietitian reviews monthly laboratory results, recommends
changes in diet and certain medications with the advice of the
nephrologist, and helps troubleshoot dietary difficulties.
Others on dialysis or with kidney transplants who are successfully
rehabilitated can serve as mentors or role models for clients to emulate.
What if the client believes his or her facility is not doing what it should for
his/her health or vocational rehabilitation?
Many people with kidney disease are depressed and angry about their
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6 Curtin RB, Oberley ET, Sacksteder P, Friedman A: Differences between employed and
nonemployed dialysis patients. Am J Kidney Dis 27:533-540, 1996
diagnosis. Their emotions can color their perceptions of dialysis and the people
caring for them. VR counselors should consider that a complaint could be based
on fact or may be unfounded. Every dialysis and transplant facility must have a
grievance procedure. Clients should have or be able to obtain a copy of the facility
grievance policy. This should list the steps to following in addressing a complaint.
As a rule of thumb, complaints should be addressed at the lowest level before they
become grievances.
• The Health Care Financing Administration (HCFA) has oversight of
dialysis and transplant clinics.
• The government created Networks (see Directory of Resources) to
assure that people with chronic kidney failure get the best possible care.
Networks have staff assigned to respond to complaints or grievances.
• Medicare also contracts with agencies, generally state health
departments, to survey dialysis and transplant facilities and to respond
to grievances.
What other federal and state governmental agencies can help those with
CKD?
The Directory of Resources in this booklet provides a brief description of
what some agencies can do to help. Some of these agencies include:
• State VR
• Social Security Administration (SSA)
• Health Care Financing Administration (HCFA)
• Equal Employment Opportunity Commission (EEOC)
• Medicare
• National Kidney and Urologic Diseases Information Clearinghouse
(NKUDIC)
Are there any programs that specifically address the vocational needs of this
population?
• The National Kidney Foundation’s People Like Us, Live program
educates people with kidney disease about their options for treatment,
diet, and coping.
• The NKF RISE Program and NKF of Georgia’s Club Independence
and Springboard help people with CKD achieve improved vocational
rehabilitation opportunities and outcomes.
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• Networks hold seminars for those with CKD that include
rehabilitation topics and VR staff participating. Network of New York
has added vocational specialist whose primary responsibility is to link
those with CKD to VR services.
• State Kidney Programs
• Dialysis and transplant support organizations
Any of these organizations could provide an excellent venue for specialized
rehabilitation orientation programs targeted to clients with CKD.
What federal laws protect people with disabilities, including clients with
kidney failure?
Federal legislation provides protections against discrimination and
supports vocational rehabilitation for those with disabilities. Laws enforced by
EEOC include Title VII of the Civil Rights Act, Equal Pay Act of 1963 (EPA), Age
Discrimination in Employment Act of 1967 (ADEA), Title V of the Rehabilitation Act
of 1973, as amended, Titles I and V of the Americans with Disabilities Act of 1990
(ADA), and the Civil Rights Act of 1991. Children with CKD may be protected
under the Individuals with Disabilities Education Act (IDEA), as amended.
Some anecdotal reports of employment discrimination were received
after employer group health plans became primary payers for kidney disease
treatment. Reportedly employers offered incentives to clients or family members
to waive health insurance benefits, terminated clients or their spouses who
insured them, or did not hire clients or spouses and it was hypothesized that this
could have been related to kidney disease.7
Those with kidney disease need to be aware of their legal rights and
responsibilities. As one of the listed disabilities, clients with kidney disease are
covered by the ADA as long as the employer (or staffing agency) has 15 or more
employees. Minorities, including African-Americans, those of Hispanic or Asian
origin, and Native Americans are at higher risk of kidney disease than Caucasians.
They may be covered by the Civil Rights Act in addition to the ADA. Those over
age 40 who have kidney disease are protected by the Age Discrimination in
Employment Act in addition to the ADA.
The federal and state government, as large employers, employ and
contract with companies that hire those with kidney failure. Government
agencies have a long history of hiring people with disabilities and contract with
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7 GAO: Medicare: Millions Saved in End-stage Renal Disease Expenditures Shifted to Employer
Health Plans. GAO/HRD-93-31, December 1992.
other companies who could potentially hire people with kidney disease.
Government jobs offer benefits and flexible scheduling that could be attractive
to people with CKD. The Rehabilitation Act covers people with disabilities in
the public sector.
Clients with kidney failure requiring dialysis or transplant should be also
be protected by the Family and Medical Leave Act (FMLA) if they and their
employer meet established criteria. The FMLA allows those with serious health
conditions requiring medical treatment to take intermittent or reduced leave
(unpaid or paid, if accrued) to adjust to dialysis, recuperate from a transplant, or
to be on time to dialysis or medical appointments. Clients should give as much
notice as possible (60 days whenever possible) and attempt to schedule their time
off so it will not disrupt their employers’ operations. By law, employers must
provide qualified employees a different position with the same pay and benefits
that is more accommodating to their needs for leave. Dialysis or transplant
providers should be able to provide documentation to the employer if needed.
Other laws that should help those with kidney disease include the Ticket
to Work and Work Incentives Improvement Act and the Workforce Investment Act.
The TTWWIIA offers a safety net for transplant recipients who need time to
find employment with health benefits. This law could motivate those with dual
disabilities whose immunosuppressant coverage is linked to their Medicare
eligibility to work since they can keep Medicare 8.5 years. Expedited redetermination
of disability may relieve the fear of those who are concerned that
they could not afford to live within an income if they had to meet a new disability
waiting period if they could not work due to disability in the future. The
Workforce Investment Act’s combining all job-related agencies into one stop
centers should help those with kidney disease that lack transportation resources
to obtain employment services with less difficulty.
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What health coverage is available for kidney-related treatment?
Health Insurance Status of Those Initiating Treatment for Kidney Failure
Source of Data: USRDS 2000 Annual Report
About 81% of those starting treatment for kidney failure reported that
they planned to apply for Medicare. As addressed in previous chapters, Medicare
pays a portion of most inpatient and outpatient services including transplantation
and all types of dialysis; however, it does not pay for take-home medications
except for anti-rejection medications for transplant recipients. To be eligible
someone must have enough qualifying work credits or qualify under a spouse or
parent (if a child). Medicare coverage starts the first day of the third month for
in-center hemodialysis. For home dialysis or transplant the 3-month waiting
period is waived. A transplant recipient is eligible for Medicare the month a
transplant is performed or up to two months before a live donor transplant.
There is a 30-month coordination of benefits period for those with
employer group health plan coverage through their own or a spouse’s current
employer. During this 30-month period, their commercial insurance is primary.
If they have Medicare during this period, it can pay secondary benefits. Medicare
coverage continues as long as dialysis is needed, but ends 36 months after a
transplant unless someone is also entitled to Medicare due to age or other
disability besides kidney failure. In the unlikely event that someone on dialysis
recovers enough kidney function to survive without dialysis, Medicare continues
for 12 months.
Medicaid provides inpatient and outpatient coverage for eligible state
residents based on federal and state policies. Medicaid can pay for medications,
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Medicaid: 40%
Employer Group: 15% Other: 23%
VA: 1%
None: 4%
Medicare: 17%
emergency and non-emergency medical transportation, Medicare premiums, and
in some cases commercial health insurance premiums. Those on Medicaid must
meet financial guidelines to qualify.
Employer Group Health Plans have different levels of coverage and may
require treatment by specific providers (HMO) or encourage those on dialysis or
with kidney transplants to seek treatment from preferred providers (PPO) by
offering coverage incentives. Employers are not required to offer extended
benefits (COBRA) benefits to anyone who has Medicare, although employers are
not forbidden from doing so.
The U.S. Department of Veterans Affairs can help pay for dialysis for those
with service connected disabilities or veterans who served during specific years.
The VA will pay for medications for any veteran who has prescriptions filled at
the VA hospital.
TRICARE provides healthcare coverage for active duty and retired
military and their families. There are three plans including an HMO-type, PPOtype,
and traditional type plan.
Other commercial payers including Medigap (Medicare supplement plans)
plans can pay the balance on expenses that are Medicare covered. Eligibility varies
from state to state. Individual health plan coverage varies according to plan and
state regulation. State high risk health plans may help people pay the coinsurance
amounts left after Medicare pays and may be available to provide health coverage
for transplant recipients. Some plans do not accept those who have Medicare.
Some states have state kidney programs that provide different benefits based
on eligibility guidelines. Nephrology social workers know about these programs,
their eligibility guidelines, and benefits.
The State Health Insurance Assistance Program (SHIP) can answer
questions general health insurance questions and questions about Medigap,
Medicare, and how to file an appeal (see Directory of Resources).
Where else can I turn to find out more about kidney disease, its treatment,
and employment prospects?
The Internet offers a portal to a universe of resources, which is
continually updated, improved, and expanded. Colleges and universities with
medical and/or rehabilitation programs are also good resources for new areas of
research. Rather than provide the list of websites here, an alphabetical Directory
of Resources follows.
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Chapter 5
Negotiating A Job Accommodation for A Client on Hemodialysis
(Case Study)
A 42 year old male union worker who had been on dialysis for over a
year returned to work after an extended medical leave of absence. He took
medical leave to allow time for him to adjust to the dialysis treatment regime
and regain his health following a medical crisis. When he returned to work, the
dialysis unit was willing to adjust his treatment schedule to accommodate his
work schedule. However, an interesting situation immediately developed with
his local union!
The client worked on loading docks running a forklift and other heavy
equipment. The loading dock where he worked was busy and operated two full
shifts a day. Each forklift driver on the dock had seniority privileges. These
privileges allowed the workers with the most seniority to “bid” the shift of their
choice. Because the client had lower seniority, when the bid reached his level, no
shift was available to reasonably accommodate his dialysis schedule. The nurse
manager at the patient’s dialysis unit advocated for him in negotiations with the
union. However the union would not budge. The client felt forced to work a shift
that left him feeling exhausted and ready to quit. The nurse manager called the
ESRD Network serving her area and requested assistance and guidance since no
one at the clinic knew that VR could help workers keep their jobs.
ESRD Network staff contacted the local union steward and initiated a
discussion regarding discrimination in the workplace. She reminded the steward
that unions were formed to protect workers from unfair management practices.
The ESRD Network sent the union steward and owner of the shipping company
a copy of AAKP’s Americans With Disabilities Act of 1990: Your Rights in the
Workplace. After telephone discussions, review of the material, reminders of the
union philosophy of “brotherhood,” at a union meeting the patient was given the
best shift to accommodate his need for dialysis.
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Negotiating A Hemodialysis Shift Accommodation For Work (Case Study)
A sole breadwinner and head of a 4-member family household was
working days as a manager in a lumber company while receiving dialysis in the
very late afternoon/evening shift on Mondays, Wednesdays, and Fridays. His
dialysis clinic was a 30-station clinic with a census of over 200 patients owned by
a large national corporation and located in an urban area. This clinic was the
closest one to his home and workplace. Increasing demands of his work required
that he stay later on the job, causing him to arrive later for his afternoon/evening
dialysis shift. He approached the nurse manager of his dialysis clinic to request
a 6 p.m. to 10 p.m. shift that would allow him to continue working full time and
increase his chances for promotion to the management position for which he was
being considered.
The nurse manager refused his request for a later shift and stated that he
could go to another clinic where they had a night shift. He explained that the
additional travel time required – the other clinic was 35 miles away – would place
an undue burden on his already stressful work, treatment, and family schedule.
The nurse manager was further unwilling to establish a night shift because of
“crime risk in the neighborhood” where the clinic was located. As a final point of
argument, the nurse manager explained she would need to have least seven who
wanted a night shift for her to get corporate approval, adding that there were not
seven interested people. The client conducted his own survey and located seven
interested patients. He contacted the ESRD Network when the situation
remained at an impasse.
ESRD Network staff placed calls to the nurse manager, facility medical
director (also the client’s primary care physician), and to the area manager for the
dialysis corporation. She explained to all parties that most large urban facilities
do offer night shifts to accommodate those who worked and that the Health
Care Financing Administration (HCFA) that monitors care and pays for dialysis
and transplantation is very interested in vocational rehabilitation for those with
kidney failure. She pointed out that HCFA urges that facilities take all
reasonable measures to help those who are working manage both work and
dialysis schedules.
A compromise was reached. The client was offered a very early morning
dialysis shift from 4:30 a.m. to 8:30 a.m. that allows him to arrive at work by
9:00 a.m. The unit now opens earlier and the client has to get up very early, but
now everyone is relatively happy.
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Chapter 5
Advocating Coverage For Home Dialysis To Maintain Employment
(Case Study)
A middle-aged nurse was working full time in an administrative capacity
when she started dialysis. She wanted to continue to work full time and get her
full dialysis treatments that she knew she needed to stay healthy. Because she lived
in a densely populated urban setting, this created commuting difficulties during
rush hour traffic. She was beginning to have problems working full time, getting
12 full hours of dialysis a week, and commuting between home, work and her
dialysis facility. Something had to give. She began to explore the possibility of
home hemodialysis, one of the options for treatment covered under Medicare.
Medicare regulations governing dialysis and transplant facilities encourage people
to select self-care modalities whenever feasible.
Her dialysis facility was supportive of her choice to do home hemodialysis
with a household member/partner trained to help her with the treatment. Her
professional training as a nurse made the choice seem even more logical.
However, her HMO, which was her primary payer during the first 30 months of
Medicare eligibility, denied payment for home hemodialysis stating that it would
cost more. She found that the HMO medical director and staff had very limited
knowledge of dialysis choices and believed home hemodialysis was experimental.
They were not aware that Medicare promoted home dialysis nor that it
reimbursed home hemodialysis at the same rate as in-center hemodialysis.
The nurse was determined and began the appeal process with her HMO.
She enlisted the support of her ESRD Network and of the Life Options
Rehabilitation Program, another strong advocate in the renal community. Both
advocacy sources provided her with support, encouragement, and reference
material as she threaded her way through the HMO appeals process. After many
months, she won her appeal and today is dialyzing at home and working full
time. Without her nursing background and tenacity, the outcome could have
been much different.
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91
Directory of Resources for
People with Kidney Disease
A
ADA Building Standards: www.designlinc.com is a good place to start to
research this topic.
Age Discrimination in Employment Act of 1967 (ADEA):
www.eeoc.gov/laws/adea.html protects those who are 40 years of age or older.
Agency For Healthcare Research And Quality (AHRQ): provides a
summary document on ESRD as a presumed disability Determinants of Disability
in People with Chronic Renal Failure (summary Pub No. 00-E012) at
www.ahrq.gov/clinic/renalsum.htm. For the full report (Pub No. 00-E013) call
(800) 358-9295.
American Association Of Kidney Patients (AAKP): www.aakp.org
(800) 749-2257 offers on its website educational materials as well as a list of its
local chapters. AAKP is an education, support, and advocacy organization. AAKP
publishes aakpRENALIFE, AAKP Renal Flash (electronic newsletter), The
Americans With Disabilities Act, and other educational materials including When
Kidneys Fail, Hemodialysis Advisory, Peritoneal Dialysis Adequacy, and Peritoneal
Dialysis… Is It the Best Choice for Me? AAKP’s Patient Plan???targets newsletters
and magazines to those based on the stage of kidney disease: diagnosis to
treatment (choices), access and initiation, stabilization, and ongoing treatment.
Chapters offer educational programming and advocacy on returning to work.
American Kidney Fund (AKF): (www.akfinc.org) (800) 638-8299
provides education, limited financial assistance, and limited rehabilitation
programming in Nebraska.
Americans with Disabilities Act of 1990 (ADA): Title 1
www.eeoc.gov/laws/ada.html prohibits employment discrimination against
qualified people with disabilities in the private sector, and in state and local
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Directory of Resources for
People with Kidney Disease
governments. Employers and staffing agencies that hire contingent workers also
have obligations to follow the provisions of the ADA. A Guide for People with
Disabilities Seeking Employment provides information about the Americans with
Disabilities Act and can be found at www.ssa.gov/work/workta2.html.
C
Civil Rights Act of 1964: Title VII prohibits employment
discrimination based on race, color, religion, sex, or national origin and provides
monetary damages for intentional employment discrimination. More information
can be found at www.dol.gov/dol/oasam/public/regs/statutes/2000e-16.htm.
Club Independence: www.nkfg.org (770) 452-1539 or (800) 633-2339
(Georgia) is a program for people 19 and older offered by the National Kidney
Foundation of Georgia that could be used as a model in other areas (see Toolkit
for a program flyer).
Combined Health Info Database (CHID): www.chid.nih.gov offers a
searchable database for educational topics in different languages and formats
related to various illnesses, including kidney disease.
D
Dialysis Facility Compare: www.medicare.gov/Dialysis/Home.asp
provides information on facility physical location, contact information,
availability of evening shift, and selected facility outcomes.
Dialysisfinder: www.dialysisfinder.com is a searchable database of dialysis
facilities that requires only the name of the city and/or zip to display the facility
address and contact information and print a map to any U.S. facility.
Dialysis Support: http://groups.yahoo.com/group/dialysis_support is a
moderated online support group for people with kidney disease and those who
care about them.
E
Equal Employment Opportunity Commission (EEOC):
www.eeoc.gov (800) 669-4000 (TDD 1-800-669-6820) The EEOC is responsible
for assuring that people are not discriminated against in employment due to their
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Directory Of Resources For People With Kidney Disease
race, color, religion, sex, national origin, or disability status. The website offers
information and forms to file an EEOC complaint.
Equal Pay Act of 1963 (EPA): www.eeoc.gov/laws/epa.html protects
men and women who perform substantially equal work in the same establishment
from sex-based wage discrimination.
F
Family and Medical Leave Act of 1993 (FMLA):
www.dol.gov/dol/allcfr/ESA/Title_29/Part_825/toc.htm protects people with
serious health conditions requiring medical treatment who have worked at least
a year for an employer with 50 or more employees within a 75 mile radius of
the workplace.
Forum of ESRD Networks: www.esrdnetworks.org (804) 794-2586 is
the membership organization for 18 Networks. Medicare regulations mandate
that in addition to other activities Networks should promote access to treatment
settings most appropriate with vocational rehabilitation and encourage those with
kidney failure, service providers, and facilities to participate in VR programs.
How Networks do this varies from Network to Network. Many have
rehabilitation committees, hold educational seminars, and are aware of
educational resources available in the states they cover. Networks receive and
process grievances about dialysis facilities and/or personnel. The website offers:
• Annual report on Network activities including vocational rehabilitation
• Map showing ESRD Networks with a link to each one
• Links to two different search engines for locating dialysis facilities
Forward Bound: NKF of MS (601) 981-3611 or E-mail:
NKFMS@worldnet.att.net promotes rehabilitation of people between the ages
of 19 and 40.
H
Health Care Financing Administration (HCFA): www.hcfa.gov has
useful information on a variety of topics related to programs administered by
HCFA.
• www.hcfa.gov/medicaid/twwiia/twwiiahp.htm offers information on
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the Ticket to Work and Work Incentives Improvement Act.
• www.hcfa.gov/medicaid/twwiia/comchart.htm offers a table of how
states can implement expanded Medicaid coverage for those with
disabilities who work.
• www.hcfa.gov/regions/roinfo.htm offers a list of the 10 HCFA
regional offices
I
Independent Living Centers: www.designlinc.com/centers.htm provides
a listing of all the IL centers in the USA. Independent Living Centers serve as
advocates on a wide range of national, state, and local issues pertaining to people
with disabilities. They work to assure physical and programmatic access to
housing, employment, transportation, communities, recreational facilities, and
health and social services.
International Center for the Disabled (ICD): (212) 585-6072 conducts
research and has developed training materials specifically for employers,
physicians, Creating A Vocational Rehabilitation Program for Individuals on Renal
Replacement Therapy: A Resource Manual.
K
The Kidney Transplant Dialysis Association (KD/TA): (781) 641-
4000 is a membership organization of those on dialysis or with transplants, family
members, and professionals located in New England. Dedicated to providing
financial aid, education, and support, the KT/DA publishes a regular newsletter,
RenalGram, a handbook, and provides limited camp scholarships and scholarships
for post-secondary education.
L
Life Options Rehabilitation Resource Center: www.lifeoptions.org
(800) 468-7777 offers technical assistance and free educational materials on renal
rehabilitation. Free information on the Internet includes Keys to a Long Life
Just the Facts fact sheets, a Goal setting Worksheet, and Patient Interest Checklists,
Employment: A Guide to Work, Insurance and Finance for People on Dialysis,
bibliography references, success stories and tips, and much more.
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Directory Of Resources For People With Kidney Disease
M
Medicaid:
• www.hcfa.gov/medicaid/medicaid.htm is the Medicaid website and
includes a search field that locates information about Medicaid
through use of keys words
• www.hcfa.gov/medicaid/dualelig/resource.pdf is a resource directory
with definitions of terms, acronyms, listings of State Health
Insurance Assistance Programs, State Medicaid Offices, State
Agencies on Aging, State Departments of Insurance, LIHEAP
Coordinators and Tribal LIHEAP (Low-Income Home Energy
Assistance Program) Coordinators, as well as State Distributing
Agencies (nutrition programs)
Medication Assistance:
• at www.phrma.org/patients/ or in a searchable database on the
Medicare website is where the 1999-2000 Directory of Prescription Drug
Patient Assistance Programs can be found. The directory can be obtained
from the Pharmaceutical Research and Manufacturers Association
(PhRMA) by calling (202) 835-3400.
• www.medicare.gov/Prescription/Home.asp is a database on the
Medicare website that can be searched by state or region for medication
assistance programs
• www.rxassist.org/ (877) 844-8442 for healthcare providers includes
forms to submit for financial assistance for medications.
Medicare:
• www.medicare.gov/ provides publications on Medicare coverage
• www.medicare.gov/Publications/Pubs/pdf/esrdCoverage.pdf
provides Medicare Coverage of Kidney Dialysis and Kidney Transplant
Services (HCFA-10128) in English, large print version, and Spanish
• www.medicare.gov/Contacts/Home.asp offers Helpful Contacts for
general information, reporting quality of care concerns and complaints,
general health information, billing, information on health care facilities
in the area and self-help groups by state
Medigap (Medicare Supplement) Plans: offer secondary coverage for
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Medicare covered services. Although some offer prescription coverage (usually
requires underwriting) and coverage outside the United States, most do not.
Medigap Compare: www.medicare.gov/mgcompare/home.asp provides
a searchable database of Medigap plans offered in any state
N
National Council on Disability (NCD): www.ncd.gov
Each ADA Disability & Business Technical Assistance Center (800)
949-4232 provides businesses, government entities, and the public with
information, materials, and technical assistance regarding the Americans with
Disabilities Act. A site map of DBTCs is located at www.adata.org/indexdbtac.
html.
• Region 1 – New England Disability & Business Technical
Assistance Center (CT, ME, MA, NH, RI, VT), Adaptive
Environments Center, Inc., 374 Congress Street, Suite 301, Boston,
MA 02210 (617) 695-0085 (V/TTY), (617) 482-8099 (Fax), Email:
adaptive@adaptenv.org Website: www.adaptenv.org.
• Region II – Northeast Disability & Business Technical Assistance
Center (NJ, NY, PR, VI), United Cerebral Palsy Associations of New
Jersey, 354 South Broad Street, Trenton, NJ 08608, (609) 392-4004
(V), (609) 392-7044 (TTY), (609) 392-3505 (Fax), Email:
dbtac@ucpanj.org, Website: www.disabilityact.com.
• Region III – Mid-Atlantic Disability & Business Technical
Assistance Center (DE, DC, MD, PA, VA, WV), TransCen, Inc., 451
Hungerford Drive, Suite 607, Rockville, MD 20850, (301) 217-0124
(V/TTY), (301) 217-0754 (Fax), Email: adainfo@transcen.org,
Website: www.adainfo.org.
• Region IV – Southeast Disability & Business Technical Assistance
Center (AL, FL, GA, KY, NC, SC, MS, TN), UCP National, Center
for Rehabilitation Technology at Georgia Tech, 490 Tenth Street,
Atlanta, GA 30318, (404) 385-0636 (V/TTY), (404) 385-0641 (Fax),
Email: se-dbtac@mindspring.com, Website: www.sedbtac.org.
• Region V – Great Lakes Disability & Business Technical
Assistance Center (IL, IN, MI, MN, OH,WI), University of
Illinois/Chicago, Department on Disability & Human Development,
1640 West Roosevelt Road, Chicago, IL 60608, (312) 413-1407
(V/TTY), (312) 413-1856 (Fax), Email: gldbtac@uic.edu, Website:
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Directory Of Resources For People With Kidney Disease
www.adagreatlakes.org.
• Region VI – Southwest Disability & Business Technical
Assistance Center (AR, LA, NM, OK, TX), Independent Living
Research Utilization, 2323 South Shepherd Boulevard, Suite 1000,
Houston, TX 77019, (713) 520-0232 (V/TTY), (713) 520-5785 (Fax),
Email: ilru@ilru.org, Website: www.ilru.org/dbtac.
• Region VII – Great Plains Disability & Business Technical
Assistance Center (IA, KS, MO, NE), ADA Project, University of
Missouri/Columbia, 100 Corporate Lake Drive, Columbia, MO
65203, (573) 882-3600 (V/TTY), (573) 884-4925 (Fax), Email:
adalh@showme.missouri.edu, Website: www.adaproject.org.
• Region VIII – Rocky Mountain Disability & Business Technical
Assistance Center (CO, MT, ND, SD, UT, WY), Meeting the
Challenge, Inc., 3630 Sinton Road, Suite 103, Colorado Springs, CO
80907, (719) 444-0268 (V/TTY), (719) 444-0269 (Fax), Email:
RegionVIII@mtc-inc.com, Website: www.ada-infonet.org.
• Region IX – Pacific Disability & Business Technical Assistance
Center (AZ, CA, HI, NV, Pacific Basin), California Public Health
Institute, 2168 Shattuck Avenue, Suite 301, Berkeley, CA 94704-1307,
(510) 848-2980 (V), (510) 848-1840 (TTY), (510) 848-1981 (Fax),
Email: adatech@pdbtac.com, Website: www.pacdbtac.org.
• Region X – Northwest Disability & Business Technical Assistance
Center (AK, ID, OR, WA), Washington State Governor’s Committee
on Disability Issues & Employment, P.O. Box 9046, MS 6000,
Olympia, WA 98507-9046, (360) 438-4116 (V/TTY), (360) 438-3208
(Fax), Email: dcolley@esd.wa.gov, Website: www.wata.org/NWD.
National Kidney Disease Education Program (NKDEP): (301) 594-
1932 was established to develop a coordinated national program to educate those
with kidney disease and healthcare providers to reduce the morbidity and
mortality caused by kidney disease.
National Kidney Foundation (NKF): www.kidney.org (800) 622-9010
provides educational and supportive meetings, programs and materials for people
with kidney disease, their family members and providers; promotes quality of care
development and dissemination of guidelines; funds research; and advocates for
community services for people with kidney disease and for federal and state
policies that promote quality care and quality of life. NKF offers programs that
promote rehabilitation, such as People Like Us, Live! and Rehabilitation,
Information, Support and Empowerment (RISE) plus numerous publications
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Twenty-Seventh Institute on Rehabilitation Issues
on the kidney, kidney disease, prevention, and treatment. NKF also publishes
several brochures on rehabilitation topics such as working, exercise, and coping.
NKF publishes a directory of camps for children and families, Family Focus and
Transplant Chronicles and For Those Who Give and Grieve newsletters. In addition,
NKF offers one brochure for VR counselors who work with people with kidney
disease and a brochure for employers. NKF’s constituent councils include the
Patient & Family Council (people with kidney disease), TransAction Council
(transplant recipients), and the Donor Family Council (those who have donated
organs). NKF affiliates (www.kidney.org/general/affiliates/affaff.cfm) offer
education and programs to help those with kidney disease, professionals, and the
public. Affiliates also fund research and advocate for community services to fill
unmet needs.
National Kidney and Urologic Diseases Information Clearinghouse
(NKUDIC): www.niddk.nih.gov/health/kidney/nkudic.htm (301) 654-4415
publishes print and posts on the Internet materials on kidney function, behaviors
and conditions that lead to kidney disease and failure, preventive strategies, diet,
and options for treatment of kidney failure. (See also Combined Health
Information Database).
National Organization for State Kidney Programs: offers a directory
of state kidney programs that is available by contacting the director of the
Missouri Kidney Program at (800) 733-7345.
Nephron Information Center: www.nephron.com provides information
on pre-dialysis (Fadem’s Kidney Guide), quality of care guidelines (Kidney Disease
Outcomes Quality Initiative), helpful Internet links (Dialysis Patients Health Guide),
a searchable database of facilities based on HCFA data.
Networks
• ESRD Network of New England (CT, ME, MA, NH, RI, VT), PO
Box 9484, New Haven, CT 06534, (203) 387-9332, FAX (203) 389-
9902, Email: jkitsen@nw1.esrd.net
• ESRD Network of New York (NY), 1249 Fifth Avenue, A-419, New
York, NY 10029, (212) 289-4524, Fax: (212) 289-4732, Email:
grasmussen@nw2.esrd.net
• TransAtlantic Renal Council (NJ, PR, VI), Cranbury Gates Office
Park, 109 S Main Street, Suite 21, Cranbury, NJ 08512, (609) 490-
0310, Fax: (609) 490-0835, Email: jsolanchick@nw3.esrd.net
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Directory Of Resources For People With Kidney Disease
• ESRD Network Org #4 (DE, MD), 200 Lothrop Street, Pittsburgh,
PA 15213-2582, (412) 647-3428, Fax: (412) 683-6814, Email:
bfreed@nw4.esrd.net
• Mid-Atlantic Renal Coalition (VA, WV, MD, DC), 1527 Huguenot
Road, Midlothian, VA 23113, (804) 794-3757, Fax: (804) 794-3793,
Email: marc@nw5.esrd.net
• Southeastern Kidney Council (GA, NC, SC), 1000 St. Albans Drive
# 270, Raleigh, NC 27609, (919) 788-8112, Fax:(919) 788-9399,
Email: jkrisher@nw6.esrd.net
• ESRD Network of Florida (FL), One Davis Boulevard, Suite 304,
Tampa, FL 33606, (813) 251-8686, Fax:(813) 251-3744, Email:
rmizzoni@nw7.esrd.net
• Network 8, Inc. (AL, MS, TN), PO Box 55868, Jackson, MS 39296-
5868, (601) 936-9260, Fax: (601) 932-4446, Email: jfuller@nw8.esrd.net
• The Renal Network (IL, IN, KY, OH), 911 East 86th Street, Suite
202, Indianapolis, IN 46240, (317) 257-8265, Fax: (317) 257-8291,
Email: sstark@nw10.esrd.net
• Renal Network of the Upper Midwest, Inc. (MN, MI, ND, SD,
WI), 970 Raymond Avenue # 205, St. Paul, MN 55114, (651) 644-
9877, Fax: (651) 644-9853, Email: dcarlson@nw11.esrd.net
• ESRD Network #12 (IA, KS, MO, NE), 7505 NW Tiffany Springs
Pkwy, Suite 230, Kansas City, MO 64153, (816) 880-9990, Fax: (816)
880-9088, Email: ltaylor@nw12.esrd.net
• ESRD NW Organization #13 (AR, LA, OK), 6600 N Meridian Ave,
Suite 155, Oklahoma City, OK 73116, (405) 843-8688, Fax: (405) 842-
4097, Email: pphilliber@nw13.esrd.net
• ESRD Network of Texas (TX), 14114 Dallas Pkwy, Suite 660,
Dallas, TX 75240, (972) 503-3215, Fax: (9172) 503-3219, Email:
gharbert@nw14.esrd.net
• Intermountain ESRD Network (AZ, CO, NV, NM, UT, WY), 1301
Pennsylvania Ave, Suite 750, Denver, CO 80203-5012, (303) 831-
8818, Fax: (303) 860-8392, Email: sstiles@nw15.esrd.net
• Northwest Renal Network (AK, ID, MT, OR, WA), 4702 42nd
Avenue, SW, Seattle, WA 98116, (206) 923-0714, Fax: (206) 923-0716,
Email: llawson@nw16.esrd.net
• TransPacific Renal Network (AS, GU, Mariana Islands, HI, N CA),
25 Mitchell Boulevard Suite 7, San Rafael, CA 94903, (415) 472-8590,
Fax: (415) 472-8594, Email: asukloksy@nw17.esrd.net
• Southern California Renal Disease Council (S CA), 6255 Sunset
Boulevard, Suite 2211, Los Angeles, CA 90028, (323) 962-2020, Fax:
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Twenty-Seventh Institute on Rehabilitation Issues
(323) 962-2891, Email: dmarsh@nw18.esrd.net
P
People Like Us, Live! is a program offered through National Kidney
Foundation affiliates that provides support and group education for people with
kidney disease and their families about kidney disease, options for treatment, diet,
and finances and coping.
Pharmaceutical Assistance Programs (see Medication Assistance)
Polycystic Kidney Research Foundation: www.pkdcure.org (800) 753-
2873 funds research on polycystic kidney disease, provides education, and
publishes The PKD Patients’ Manual, Q & A on PKD, and The Family and ADPKD:
A Guide for Children and Parents.
Project ACTION: www.projectaction.org/paweb/index.htm#welcome
(202) 347-3066 provides a database of transportation for people with disabilities
living in urban and rural communities
R
Rehabilitation Act of 1973 Section 501 www.eeoc.gov/laws/rehab.html
prohibits discrimination against qualified people in the federal government.
Section 504 of the Rehabilitation Act of 1973 prohibits employment in any
program that receives federal funds or in any government agency, including the
U.S. Postal Service www.dol.gov/dol/oasam/public/regs/statutes/sec504.htm.
Renal Physicians Association: www.renalmd.org has a committee that
focuses on issues of those with kidney disease. The RPA has developed two
clinical practice guidelines: Shared Decision Making in the Initiation and Withdrawal
from Dialysis, and Appropriate Patient Preparation for Renal Replacement Therapy, the
later includes information on rehabilitation.
Renal Support Network: www.renalnetwork.org offers online support
RENALNET: www.renalnet.org provides a clearinghouse for
information on the cause, treatment, and management of kidney disease and
kidney failure.
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Directory Of Resources For People With Kidney Disease
RenalWEB: www.renalweb.com offers discussion boards, dialysis
industry information, and education.
RISE (Rehabilitation: Information, Support & Empowerment):
www.kidney.org/patients/rise.cfm (800) 622-9010 is offered through National
Kidney Foundation Affiliates. This program supports productive living for people
with chronic kidney disease (CKD) by assessing vocational interests, skills, and
values and providing information about volunteer opportunities and educational
and vocational programs and services offered by federal and state agencies (see
Toolkit for more information)
Road Commission of the Department of Transportation (DOT) can
make those on dialysis a priority in snow emergencies, especially in rural areas.
S
Social Security Administration: www.ssa.gov/ (800) 773-1213 or (800)
325-0778 (TTY) Hours: 7 a.m.- 7 p.m. EST.
• Determines eligibility for SSI and SSDI programs;
• Determines whether SSI beneficiaries are eligible for PASS and
Section 1619(a) [sliding scale reduction in cash disability benefits] and
(b) [continuation of Medicaid benefits];
• Determines whether SSI and SSDI beneficiaries’ medical expenses can
be considered impairment-related (or blind) work expenses;
• Accepts applications for Medicare
• Provides printed and Internet information on Social Security
retirement and disability benefits as well as information programs
that help people with disabilities obtain or maintain employment.
Springboard is a program offered by the National Kidney Foundation of
Georgia [www.nkfg.org (770) 452-1539 or (800) 633-2339 (Georgia)] for people
19-30 that could be used as a model in other areas (see Toolkit for more
information).
State Health Insurance Assistance Program (SHIP) is available in every
state to answer general questions about health insurance, Medicare, Medigap
policies, or to file an appeal. Information can be found on the Medicare website
“Contacts” page at www.medicare.gov/Contacts/Home.asp or in Medicare Coverage
of Kidney Dialysis and Kidney Transplant Services (Publication No. HCFA – 10128)
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Twenty-Seventh Institute on Rehabilitation Issues
State Kidney Programs (see National Organization for State Kidney
Programs)
T
Ticket to Work and Work Incentives Improvement Act of 1999:
www.ssa.gov/work/ResourcesToolkit/legisreg2.html provides the law, regulations,
fact sheets, questions and answers, information on Medicare extension, and even a
PowerPoint Presentation on TTWWIIA.
• Provides a phased-in program in which people with disabilities receive
vouchers to obtain services from employment networks
• Extends Medicare coverage for a total of 8.5 years for people with
disabilities who work
• Encourages states to expand Medicaid coverage for people with
disabilities who work www.hcfa.gov/medicaid/twwiia/statemap.htm.
• Expedites reinstatement of Social Security disability benefits in the
case of a health setback
• Postpones re-determination of disability for those with disabilities as
long as they’re using the “tickets”
• Establishes funding for demonstration projects for innovative
programming to promote improved employment outcomes for people
with disabilities, including one that is studying a sliding scale
reduction of benefits for SSDI recipients similar to what is available
for SSI beneficiaries.
Transplant Recipients International Organization (TRIO):
www.trioweb.org/resources/helpingear.html (800) 874-6386 offers support
groups in some communities
Transplant Springboard (see Springboard)
Transportation Equity Act: www.fhwa.dot.gov/tea21/factsheets/index.htm
provides a list of fact sheets including information on Job Access and Reverse
Commute grants, Department of Transportation (DOT) grants for people with
disabilities and elderly, paratransit services under the ADA, plus the DOT’s On the
Job Training and Welfare to Work programs. Information on Job Access and
Reverse Commute 2000 projects by state and municipality can be found at
www.fta.dot.gov/wtw/jarcp00.html.
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Directory Of Resources For People With Kidney Disease
Transportation Providers can include public, commercial, and
volunteer groups that provide dialysis-related transportation. Access to reliable
transportation impacts those on dialysis vocationally and medically. Social
workers in dialysis and transplant programs generally know these resources.
TRICARE: http://tricare.osd.mil/TricareHandbook/ United Concordia
Companies, Inc., (800) 866-8499 provides healthcare coverage for active duty and
retired military and their families.
U
United Network For Organ Sharing: www.unos.org (888) 894-6361
provides a wealth of information including education about the “list,” the
transplant process, and facility-specific data on transplant outcomes.
United States Renal Data System: www.usrds.org (888) 99-USRDS
provides data on incidence, prevalence, cost of care, facility characteristics,
characteristics of those with kidney failure, and employment 6 months pretreatment
and at the initiation of dialysis or transplant.
United Way of America: http://national.unitedway.org/ (703) 836-7100,
offers community building; emergency food and shelter to supplements the work
of local private and governmental social service organizations; the letter carrier’s
National Food Drive, and Project Blueprint that seeks greater involvement of
minorities as volunteer leaders and policy makers in the United Way system.
V
Vocational Rehabilitation: www.ssa.gov/work/ServiceProviders/
rehabproviders2.html can help unemployed clients obtain education and
vocational skills and/or find full or part-time employment and help clients
maintain employment and by helping current employers understand
accommodation needs and the cost benefits of keeping a valued employee. If a
VR office cannot provide services, a list of approved alternate participants by
state can be found at www.ssa.gov/work/ServiceProviders/altpartstatlist.html.
W
Workforce Investment Act (WIA) (http://usworkforce.org/finalrule.htm)
establishes the one-stop employment service delivery systems that provide one
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Twenty-Seventh Institute on Rehabilitation Issues
point of access to all the employment resources available through many agencies
with the objective being to provide easy access job seekers to all employmentrelated
services. Whether someone requires training, vocational rehabilitation,
interview preparation, job-search assistance, or any other support in getting a job
they can receive the service at the One-Stop Center. Because many people with
kidney disease lack the transportation resources and the patience to go from agency
to agency, having all employment-related services in one location should increase
access to these services.
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Directory Of Resources For People With Kidney Disease
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Twenty-Seventh Institute on Rehabilitation Issues
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Toolkit
Kidney Diseases Dictionary
From the National Kidney and Urologic Diseases Information Clearinghouse
A
acute (uh-KYOOT): Acute often means urgent. An acute disease happens
suddenly. It lasts a short time. Acute is the opposite of chronic, or long lasting.
acute renal (REE-nul) failure: A condition in which the kidneys suddenly stop
working. In most cases, kidneys can recover from almost complete loss of
function.
acute tubular (TOO-byoo-lur) necrosis (neh-KRO-sis) (ATN): A severe form
of acute renal failure that develops in people with severe illnesses like infections
or with low blood pressure. Patients may need dialysis. Kidney function often
improves if the underlying disease is successfully treated.
albuminuria (AL-byoo-mih-NOO-ree-uh): More than normal amounts of a
protein called albumin in the urine. Albuminuria may be a sign of kidney disease.
allograft (AL-oh-graft): An organ or tissue transplant between two humans.
Alport syndrome (AL-port SIN-drome): An inherited condition that results in
kidney disease. It generally develops during early childhood and is more serious
in boys than in girls. The condition can lead to end-stage renal disease, as well as
hearing and vision problems. The common symptoms of this condition are
chronic blood and protein in the urine.
Amyloidosis (AM-ih-loy-DOH-sis): A condition in which a protein-like material
builds up in one or more organs. This material cannot be broken down and
interferes with the normal function of that organ. In kidneys, amyloidosis can
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Toolkit
Arteriovenous Fistula
From
dialyzer
To dialyzer
Veins
(blood to heart)
Radial artery
(blood from heart)
Fistula
lead to proteinuria, nephrotic syndrome, and renal failure.
analgesic(AN-ul-JEE-zik)-associated kidney disease: Loss of kidney function
that results from long-term use of analgesic (pain-relieving) medications.
Analgesics that combine aspirin and acetaminophen are most dangerous to the
kidneys.
anemia (uh-NEE-mee-uh): The condition of having too few red blood cells.
Healthy red blood cells carry oxygen throughout the body. If the blood is low on
red blood cells, the body does not get enough oxygen. People with anemia may
be tired and pale and may feel their heartbeat change. Anemia is common in
people with chronic renal failure or those on dialysis. (See also erythropoietin.)
antidiuretic (AN-tee-DY-uh-RET-ik) hormone (ADH): A natural body
chemical that slows down the urine flow. Some children who wet their beds
regularly may lack normal amounts of antidiuretic hormone.
anuria (uh-NYOOR-ee-uh): A condition in which the person stops making
urine.
arteriovenous (ar-TEER-ee-oh-VEE-nus) (AV) fistula (FIST-yoo-luh):
Surgical connection of an artery directly to a vein, usually in the forearm, created
in patients who will need hemodialysis (see dialysis). The AV fistula causes the
vein to grow thicker, allowing the repeated needle insertions required for
hemodialysis.
autoimmune (AW-toh-ih-MYOON) disease: Any disorder in which the body is
attacked by its own immune system. Examples are Goodpasture syndrome and
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Toolkit
lupus erythematosus (see lupus nephritis).
B
biopsy (BY-op-see): A procedure in which a tiny piece of a body part, such as the
kidney or bladder, is removed for examination under a microscope.
bladder (BLAD-ur): The balloon-shaped organ inside the pelvis that holds
urine.
blood urea (yoo-REE-uh) nitrogen (NY-truh-jen) (BUN): A waste product in
the blood that comes from the breakdown of food protein. The kidneys filter
blood to remove urea. As kidney function decreases, the BUN level increases.
C
calcium (KAL-see-um): A mineral that the body needs for strong bones and
teeth. Calcium may form stones in the kidney.
chronic (KRAH-nik): Lasting a long time. Chronic diseases develop slowly.
Chronic renal failure may develop over many years and lead to end-stage renal
disease.
chronic renal (REE-nul) failure: Slow and progressive loss of kidney function
over several years, often resulting in end-stage renal disease. People with endstage
renal disease need dialysis or transplantation to replace the work of the
kidneys.
creatinine (kree-AT-ih-nin): A waste product from meat protein in the diet and
from the muscles of the body. Creatinine is removed from blood by the kidneys;
as kidney disease progresses, the level of creatinine in the blood increases.
creatinine clearance: A test that measures how efficiently the kidneys remove
creatinine and other wastes from the blood. Low creatinine clearance indicates
impaired kidney function.
cyst (SIST): An abnormal sac containing gas, fluid, or a semisolid material. Cysts
may form in kidneys or in other parts of the body.
cystine (SIS-teen): An amino acid found in blood and urine. Amino acids are
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Twenty-Seventh Institute on Rehabilitation Issues
building blocks of protein. (See also cystine stone and cystinuria.)
cystine stone: A rare form of kidney stone consisting of the amino acid cystine.
cystinuria (SIS-tih-NOO-ree-uh): A condition in which urine contains high
levels of the amino acid cystine. If cystine does not dissolve in the urine, it can
build up to form kidney stones.
cystitis (sis-TY-tis): Inflammation of the bladder, causing pain and a burning
feeling in the pelvis or urethra.
cystoscope (SIS-tuh-skope): A tool for examining the bladder. The procedure is
called cystoscopy (sis-TAH-skuh-pee).
D
diabetes (dy-uh-BEE-teez) insipidus (in-SIP-ih-dus): A condition characterized
by frequent and heavy urination, excessive thirst, and an overall feeling of
weakness. This condition may be caused by a defect in the pituitary gland or in
the kidney. In diabetes insipidus, blood sugar levels are normal. (See also
nephrogenic diabetes insipidus.)
diabetes (dy-uh-BEE-teez) mellitus (MELL-ih-tus): A condition characterized
by high blood sugar resulting from the body’s inability to use sugar (glucose)
efficiently. In type 1 diabetes, the pancreas is not able to make enough insulin; in
type 2 diabetes, the body is resistant to the effects of available insulin.
dialysate (dy-AL-ih-sate): A cleansing liquid used in the two major forms of
dialysis — hemodialysis and peritoneal dialysis.
dialysis (dy-AL-ih-sis): The process of cleaning wastes from the blood artificially.
This job is normally done by the kidneys. If the kidneys fail, the blood must be
cleaned artificially with special equipment. The two major forms of dialysis are
hemodialysis and peritoneal dialysis.
• hemodialysis (HEE-moh-dy-AL-ih-sis): The use of a machine to clean
wastes from the blood after the kidneys have failed. The blood travels
through tubes to a dialyzer, which removes wastes and extra fluid. The
cleaned blood then flows through another set of tubes back into the body.
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Toolkit
• peritoneal (PEH-rih-tuh-NEE-ul) dialysis: Cleaning the blood by
using the lining of the belly (abdomen) as a filter. A cleansing solution,
called dialysate, is drained from a bag into the belly. Fluids and wastes
flow through the lining of the belly and remain “trapped” in the
dialysate. The dialysate is then drained from the belly, removing the
extra fluids and wastes from the body. There are three types of
peritoneal dialysis:
• continuous ambulatory (AM-byoo-luh-TOH-ree) peritoneal
dialysis (CAPD): The most common type of peritoneal dialysis. It
needs no machine. With CAPD, the blood is always being cleaned.
The dialysate passes from a plastic bag through the catheter and into
the abdomen. The dialysate stays in the abdomen with the catheter
sealed. After several hours, the person using CAPD drains the solution
back into a disposable bag. Then the person refills the abdomen with
fresh solution through the same catheter, to begin the cleaning
process again.
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Twenty-Seventh Institute on Rehabilitation Issues
Blood removed for cleansing
Clean blood
returned to body
Air detector clamp
Air Trap and air detector
Venous pressure monitor
Dialyzer inflow
pressure monitor
Arterial
pressure
monitor
Blood pump
Heparin pump
(to prevent
clotting)
Dialyzer
Hemodialysis
CAPD and IPD
Dialysate
Catheter
Peritoneum
Abdominal
Cavity
• continuous cyclic (SYKE-lik or SIK-lik) peritoneal dialysis
(CCPD): A form of peritoneal dialysis that uses a machine. This
machine automatically fills and drains the dialysate from the
abdomen. A typical CCPD schedule involves three to five exchanges
during the night while the person sleeps. During the day, the person
using CCPD performs one exchange with a dwell time that lasts the
entire day.
• nocturnal (nok-TURN-ul) intermittent (IN-ter-MIT-unt)
peritoneal dialysis (NIPD): A machine-aided form of peritoneal
dialysis. NIPD differs from CCPD in that six or more exchanges take
place during the night, and the NIPD patient does not perform an
exchange during the day.
dialyzer (DY-uh-LY-zur): A part of the hemodialysis machine. (See hemodialysis
under dialysis.) The dialyzer has two sections separated by a membrane. One
section holds dialysate. The other holds the patient’s blood.
dwell time: In peritoneal dialysis, the amount of time a bag of dialysate remains
in the patient’s abdominal cavity during an exchange.
E
edema (eh-DEE-muh): Swelling caused by too much fluid in the body.
electrolytes (ee-LEK-troh-lites): Chemicals in the body fluids that result from
the breakdown of salts, including sodium, potassium, magnesium, and chloride.
The kidneys control the amount of electrolytes in the body. When the kidneys
fail, electrolytes get out of balance, causing potentially serious health problems.
Dialysis can correct this problem.
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Toolkit
Dialysate
from machine
Semipermeable
membrane
Blood
returning
to patient
Blood
from patient To drain
Blood compartment
Dialyzer
Dialysate compartment
end-stage renal (REE-nul) disease (ESRD): Total chronic kidney failure.
When the kidneys fail, the body retains fluid and harmful wastes build up. A
person with ESRD needs treatment to replace the work of the failed kidneys.
erythropoietin (eh-RITH-roh-POY-uh-tin): A hormone made by the kidneys to
help form red blood cells. Lack of this hormone may lead to anemia.
ESRD: end-stage renal disease.
ESWL: extracorporeal shockwave lithotripsy.
exchange: A cycle in peritoneal dialysis in which the patient fills the abdominal
cavity with dialysate, carries it for a specified dwell time, and then empties the
dialysate from the abdomen in preparation for a fresh bag of dialysate.
extracorporeal (EKS-truh-kor-POR-ee-ul) shockwave lithotripsy (LITH-oh-
TRIP-see) (ESWL): A nonsurgical procedure using shock waves to break up
kidney stones.
F
fistula (FIST-yoo-lah): See arteriovenous fistula.
G
glomeruli (gloh-MEHR-yoo-lie): Plural of glomerulus.
glomerulonephritis (gloh-MEHR-yoo-loh-nef-RY-tis): Inflammation of the
glomeruli. Most often, it is caused by an autoimmune disease, but it can also
result from infection.
glomerulosclerosis (gloh-MEHR-yoo-loh-skleh-ROH-sis): Scarring of the
glomeruli. It may result from diabetes mellitus (diabetic glomerulosclerosis) or
from deposits in parts of the glomerulus (focal segmental glomerulosclerosis).
The most common signs of glomerulosclerosis are proteinuria and kidney
failure.
glomerulus (gloh-MEHR-yoo-lus): A tiny set of looping blood vessels in the
nephron where blood is filtered in the kidney.
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Goodpasture syndrome: An uncommon disease that usually includes bleeding
from the lungs, coughing up of blood, and inflammation of the kidneys that can
lead to kidney failure. This condition is an autoimmune disease.
H
hematocrit (hee-MAT-uh-krit): A measure that tells how many red blood cells
are present in a blood sample. Low hematocrit suggests anemia or massive blood
loss.
hematuria (HEE-muh-TOOR-ee-uh): Blood in the urine, which can be a sign
of a kidney stone, glomerulonephritis, or other kidney problem.
hemodialysis: See dialysis.
hemolytic (HEE-moh-LIT-ik) uremic (yoo-REE-mik) syndrome (SIN-drome)
(HUS): A disease that affects the blood and blood vessels. It destroys red blood
cells, cells that cause the blood to clot, and the lining of blood vessels. HUS is
often caused by the Escherichia coli bacterium in contaminated food. People with
HUS may develop acute renal failure.
hormone (HOR-mone): A natural chemical produced in one part of the body
and released into the blood to trigger or regulate particular functions of the body.
The kidney releases three hormones: erythropoietin, renin, and an active form of
vitamin D that helps regulate calcium for bones.
hydronephrosis (HY-droh-nef-ROH-sis): Swelling of the top of the ureter, usually
because something is blocking the urine from flowing into or out of the bladder.
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Hydronephrosis
Healthy Kidney Unhealthy Kidney
Kidney smaller
than normal
Urine dammed back
into renal pelvis
Renal stone
stuck in ureter
hypercalciuria (HY-per-kal-see-YOO-ree-uh): Abnormally large amounts of
calcium in the urine.
hyperoxaluria (HY-per-ox-uh-LOO-ree-uh): Unusually large amounts of
oxalate in the urine, leading to kidney stones.
hypertension (HY-per-TEN-shun): High blood pressure, which can be caused
either by too much fluid in the blood vessels or by narrowing of the blood vessels.
I
IgA nephropathy (nef-RAHP-uh-thee): A kidney disorder caused by deposits of
the protein immunoglobulin A (IgA) inside the glomeruli (filters) within the kidney.
The IgA protein damages the glomeruli, leading to blood and protein in the urine,
to swelling in the hands and feet, and sometimes to kidney failure.
immune (im-YOON) system: The body’s system for protecting itself from
viruses and bacteria or any “foreign” substances.
immunosuppressant (im-YOON-oh-suh-PRESS-unt): A drug given to suppress
the natural responses of the body’s immune system. Immunosuppressants are
given to transplant patients to prevent organ rejection and to patients with
autoimmune diseases like lupus.
interstitial (IN-ter-STISH-ul) nephritis (nef-RY-tis): Inflammation of the
kidney cells that are not part of the fluid-collecting units, a condition that can lead
to acute renal failure or chronic renal failure.
intravenous (IN-truh-VEE-nus) pyelogram (PY-loh-gram): An x-ray of the
urinary tract. A dye is injected to make the kidney, ureters, and bladder visible
on the x-ray and show any blockage in the urinary tract.
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Amount of
blood in vessel
Diameter of
blood vessel
Blood
pressure
Narrow
Normal
Normal
Normal
Too much fluid
Normal
High
Normal
High
Normal
High
Normal
Hypertension
K
kidneys (KID-neez): The two bean-shaped organs that filter wastes from the
blood. The kidneys are located near the middle of the back. They create urine,
which is delivered to the bladder through tubes called ureters.
kidney stone: A stone that develops from crystals that form in urine and build
up on the inner surfaces of the kidney, in the renal pelvis, or in the ureters.
Kt/V (kay-tee over vee): A measurement of dialysis dose. The measurement
takes into account the efficiency of the dialyzer, the treatment time, and the total
volume of urea in the body. See also URR.
L
lithotripsy (LITH-oh-TRIP-see): A method of breaking up kidney stones using
shock waves or other means.
lupus (LOO-pus) nephritis (nef-RY-tis): Inflammation of the kidneys caused by
an autoimmune disease called systemic lupus erythematosus (eh-rih-theh-mah-
TOH-sis). The condition can cause hematuria and proteinuria, and it may
progress to end-stage renal disease.
M
membrane (MEM-brane): A thin sheet or layer of tissue that lines a cavity or
separates two parts of the body. A membrane can act as a filter, allowing some
particles to pass from one part of the body to another while keeping others where
they are. The membrane in a dialyzer filters waste products from the blood.
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Dialyzer Membrane
Dialysate compartment
Blood compartment
Blood cells
Waste products
Semipermeable
membrane
Waste products
membranoproliferative (MEM-bray-no-pro-LIF-er-uh-tiv) glomerulonephritis
(gloh-MEHR-yoo-loh-nef-RY-tis): A disease that occurs primarily in children and
young adults. Over time, inflammation leads to scarring in the glomeruli, causing
proteinuria, hematuria, and sometimes chronic renal failure or end-stage renal
disease.
N
nephrectomy (nef-REK-tuh-mee): Surgical removal of a kidney.
nephrogenic (NEF-roh-JEN-ik) diabetes (DY-uh-BEE-teez) insipidus (in-
SIP-ih-dus): Constant thirst and frequent urination because the kidney tubules
cannot respond to antidiuretic hormone. The result is an increase in urine
formation and excessive urine flow.
nephrolithiasis (NEF-roh-lih-THY-uh-sis): Kidney stones.
nephrologist (nef-RAHL-oh-jist): A doctor who treats patients with kidney
problems or hypertension.
nephron (NEF-rahn): A tiny part of the kidneys. Each kidney is made up of
about 1 million nephrons, which are the working units of the kidneys, removing
wastes and extra fluids from the blood.
nephrotic (nef-RAH-tik) syndrome: A collection of symptoms that indicate
kidney damage. Symptoms include high levels of protein in the urine, lack of
protein in the blood, and high blood cholesterol.
nuclear (NEW-klee-ur) scan: A test of the structure, blood flow, and function of
the kidneys. The doctor injects a mildly radioactive solution into an arm vein and
uses x-rays to monitor its progress through the kidneys.
O
oxalate (AHK-suh-late): A chemical that combines with calcium in urine to form
the most common type of kidney stone (calcium oxalate stone).
P
pelvis (PELL-vis): The bowl-shaped bone that supports the spine and holds up
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the digestive, urinary, and reproductive organs. The legs connect to the body at
the pelvis.
percutaneous (PER-kyoo-TAY-nee-us) nephrolithotomy (NEF-roh-lih-
THAH-tuh-mee): A method for removing kidney stones via keyhole surgery
through the back.
peritoneal dialysis: See dialysis.
polycystic (PAHL-ee-SIS-tik) kidney disease (PKD): An inherited disorder
characterized by many grape-like clusters of fluid-filled cysts that make both
kidneys larger over time. These cysts take over and destroy working kidney tissue.
PKD may cause chronic renal failure and end-stage renal disease.
proteinuria (PRO-tee-NOOR-ee-uh): The presence of protein in the urine,
indicating that the kidneys are not working properly.
pyelonephritis (PY-loh-nef-RY-tis): An infection of the kidney(s), usually caused
by a germ that has traveled up through the urethra, bladder, and ureter(s) from
outside the body.
R
renal (REE-nul): Of the kidneys. A renal disease is a disease of the kidneys. Renal
failure means the kidneys have stopped working properly.
renal agenesis (ay-JEN-eh-sis): The absence or severe malformation of one or
both kidneys.
renal cell carcinoma (KAR-sih-NOH-mah): A type of kidney cancer.
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Healthy Kidney
Polycystic
Kidney
Cysts
Ureter
renal cysts (SISTS): Abnormal fluid-filled sacs in the kidney that range in size
from microscopic to much larger. Many simple cysts are harmless, while other
types can seriously damage the kidneys.
renal osteodystrophy (AH-stee-oh-DIS-truh-fee): Weak bones caused by
poorly working kidneys. Renal osteodystrophy is a common problem for people
on dialysis who have high phosphate levels or insufficient vitamin D
supplementation.
renal pelvis (PELL-vis): The basin into which the urine formed by the kidneys
is excreted before it travels to the ureters and bladder.
renal tubular (TOOB-yoo-lur) acidosis (ASS-ih-DOH-sis): A defect in the
kidneys that hinders their normal excretion of acids. Failure to excrete acids can
lead to weak bones, kidney stones, and poor growth in children.
renal vein thrombosis (throm-BOH-sis): Blood clots in the vessel that carries
blood away from the kidney. This can occur in people with the nephrotic
syndrome.
renin (REE-nin): A hormone made by the kidneys that helps regulate the volume
of fluid in the body and blood pressure.
S
struvite (STROO-vite) stone: A type of kidney stone caused by infection.
T
transplant (TRANZ-plant): Replacement of a diseased organ with a healthy one.
A kidney transplant may come from a living donor, usually a relative, or from
someone who has just died.
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Diseased Kidney
Vein
Transplanted Kidney
Transplanted Ureter
Diseased Kidney
Artery
Bladder
U
ultrasound: A technique that bounces safe, painless sound waves off organs to
create an image of their structure.
urea (yoo-REE-uh): A waste product found in the blood and caused by the
normal breakdown of protein in the liver. Urea is normally removed from the
blood by the kidneys and then excreted in the urine. Urea accumulates in the
body of people with renal failure.
uremia (yoo-REE-mee-uh): The illness associated with the buildup of urea in the
blood because the kidneys are not working effectively. Symptoms include nausea,
vomiting, loss of appetite, weakness, and mental confusion.
ureteroscope (yoo-REE-tur-uh-scope): A tool for examining the bladder and
ureters and for removing kidney stones through the urethra. The procedure is
called ureteroscopy (yoo-ree-tur-AH-skoh-pee).
ureters (YOOR-uh-turs): Tubes that carry urine from the kidneys to the
bladder.
urethra (yoo-REE-thrah): The tube that carries urine from the bladder to the
outside of the body.
uric (YOOR-ik) acid stone: A kidney stone that may result from a diet high in
animal protein. When the body breaks down this protein, uric acid levels rise and
can form stones.
urinalysis (yoor-in-AL-ih-sis): A test of a urine sample that can reveal many
problems of the urinary system and other body systems. The sample may be
observed for color, cloudiness, concentration; signs of drug use; chemical
composition, including sugar; the presence of protein, blood cells, or germs; or
other signs of disease.
urinary (YOOR-ih-NEHR-ee) tract: The system that takes wastes from the
blood and carries them out of the body in the form of urine. The urinary tract
includes the kidneys, renal pelvises, ureters, bladder, and urethra.
urinary tract infection (UTI): An illness caused by harmful bacteria growing in
the urinary tract.
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Toolkit
urinate (YOOR-ih-nate): To release urine from the bladder to the outside.
urine (YOOR-in): Liquid waste product filtered from the blood by the kidneys,
stored in the bladder, and expelled from the body through the urethra by the act
of voiding or urinating.
urolithiasis (YOOR-oh-lih-THY-uh-sis): Stones in the urinary system.
URR (urea reduction ratio): A blood test that compares the amount of blood
urea nitrogen before and after dialysis to measure the effectiveness of the dialysis
dose.
V
vasculitis (VAS-kyoo-LY-tis): Inflammation of the blood vessel walls. This can
cause rash and disease in multiple organs of the body, including the kidneys.
vesicoureteral (VESS-ih-koh-yoo-REE-ter-ul) reflux: An abnormal condition
in which urine backs up into the ureters, and occasionally into the kidneys,
raising the risk of infection.
void: To urinate, empty the bladder.
W
Wegener’s granulomatosis (GRAN-yoo-LOH-muh-TOH-sis): An autoimmune
disease that damages the blood vessels and causes disease in the lungs, upper
respiratory tract, and kidneys.
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When Is Medicare Primary Or Secondary Payer?
Initial Treatment When Medicare When Employer Group
Type Is Primary Is Primary
(Coordination Period)
In-center hemodialysis,
disabled or not
No employer group 4th mo on as long N/A
as dialysis continues
Employer group 34th mo on as long as From 1st – 33rd mo
dialysis continues
Home/self care dialysis,
disabled or not
No employer group From 1st of mo dialysis as N/A
long as dialysis continues
Employer group From 31st mo on as long as From 1st – 30th mo
dialysis continues
Transplant, disabled
No employer group From 2 mo pre-transplant
through 36th mo if transplant N/A
occurs within 2 mo,
Employer group From 31st mo on From 1st – 30th mo
Transplant, not disabled
No employer group From 2 mo pre-transplant
through 36th mo if transplant N/A
occurs within 2 mo,
Employer group From 31st – 36th mo From 1st – 30th mo
Anyone whose transplant
rejects who starts dialysis
No employer group From 1st of mo dialysis as N/A
long as dialysis continues
Employer group From 31st mo on From 1st – 30th mo
New employee with
employer health coverage
In-center dialysis From 33rd mo on To 33rd mo
Home/self-care dialysis From 31st mo on To 31st mo
Transplant / not disabled From 31st mo – 36th mo To 31st mo
Transplant / disabled From 31st mo on To 31st mo
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What Medicare Covers For Dialysis and Transplantation
Dialysis
Service/Supply Medicare Part A Medicare Part B
(Hospital) (Medical)
Inpatient services _
Outpatient dialysis _
Home/self-care training _
Home dialysis equipment & supplies _
Certain home support services _
Some drugs needed for home dialysis _
Epogen (epoietin alfa) _
MD services _
Services: Labs, x-ray, etc. _
Ambulance transportation _
Not covered: home dialysis helper, lost pay, lodging for training or treatment, nonemergency
transportation
Transplant
Service/Supply Medicare Part A Medicare Part B
(Hospital) (Medical)
Inpatient service _
Kidney registration fee _
Recipient’s lab testing _
Donor’s lab testing _
Locating cadaveric donor kidney _
Cost of kidney donor’s care _
MD services for recipient _
MD services for donor _
Immunosuppressives _
Disabled or aged: indefinite
Not disabled: 1st to 36 mo
Dialysis or Transplant
Blood, >1st 3 pts _ if inpatient _ if outpatient
Physical therapy* _
Occupational therapy* _
*Someone with kidney failure must have a covered diagnosis; kidney failure alone will not warrant
coverage. Rehabilitation professionals know covered diagnoses and services.
Source: Medicare Coverage of Kidney Dialysis and Kidney Transplant Services (HCFA 10128)
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Rehabilitation Timeline For Dialysis Professionals
A Sample Renal Rehabilitation Timeline
Focusing rehabilitation efforts early in dialysis yields better outcomes.
Diagnosis Modality First 90 days Six months after One year after
selection of dialysis dialysis begins dialysis begins
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Toolkit
• Education on
fitness; treatment
options;
maintaining
employment;
insurance and
benefits; adjusting
to life with dialysis
with positive
expectations*
• Psychological
support
• Family orientation
to dialysis
• Education about
self-care, patient
rights and
responsibilities,
access care, diet,
exercise, other life
activities*
• Employer
education, if
necessary
• Vocational
Rehabilitation (VR)
assistance in
evaluating and
modifying
workplace, if
necessary
• Peer group support
• Encourage
functional
rehabilitation and
exercise*
• Review
rehabilitation goals
and revise if
necessary*
• VR follow-up*
• On-going peer
group support*
• On-going
education*
• Encourage
functional
rehabilitation and
exercise*
• Review
rehabilitation goals
and revise if
necessary*
• VR follow-up*
• On-going peer
group support*
• On-going
education*
• Diagnostic assessment
to determine
necessary
rehabilitation
interventions
• Rehabilitation goals
incorporated into
treatment plan after
diagnostic assessment
• Functional status
assessment*
• Education re
adequacy, patient
rights and
responsibilities, selfcare,
legal rights in
employment
• Referral for physical
therapy, occupational
therapy, communitybased
exercise
program, if
appropriate
• Employer education
and workplace
accommodation, if
needed
• On-going peer group
support
decreasing function stabilization adaptation
* Represents activity that should be either on-going or repeated periodically
throughout the course of the patient’s total dialysis program
Published or reprinted with permission of Amegen Inc., Life Options Rehabilitation Program: Building Quality
of Life: A Practical Guide to Renal Rehabilitation, 1997 (intended for education of dialysis professionals)
Rehabilitation Flow Chart For Dialysis Professionals
Renal Rehabilitation: Employment at a Glance
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Twenty-Seventh Institute on Rehabilitation Issues
Perform
vocational assessment
Consider:
• Educational level
• Past work history
• Functional status
• Military service
• Workplace support
• Dialysis staff and
family expectations
Triage
Able/willing
to work/go
to school
Currently
working or
in school
Non-vocational
Keep working
patients employed
and students
in school
• Educate working patients
about dialysis
• Expect students to stay in
school
• Provide flexible dialysis
schedules
• Begin a mentor program
• Use the Family &
Medical Leave Act, if
available and needed
• Address loss of disability
benefits
• Clarify patients’ work goals
• Facilitate job skills training
(VR, volunteerism)
• Teach self-marketing
techniques
• Encourage job searches
• Request necessary
accommodations
• Address negative employer
attitudes
• Promote physical activity
• Facilitate travel
• Suggest volunteering
• Encourage hobbies
Evaluate progress
toward goals
Help able/willing
patients to work or
attend school
Maximize
functional status of
non-vocational
patients
Published or reprinted with permission of Amegen Inc., Life Options Rehabilitation Program: Building Quality
of Life: A Practical Guide to Renal Rehabilitation, 1997 (intended for education of dialysis professionals)
Group
Goals
Methods
Flow Chart: Currently Working Clients
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Toolkit
Adapted with permission from the International Center for the Disabled, Creating a Vocational
Rehabilitation Program for Individuals on Renal Replacement Therapy: A Resource Manual, 2000
Initial Assessment
Rehabilitation Counseling
Maintain Employment
Information on
ADA/Rights
in the Workplace
Crisis
Intervention
Trouble Shooting
(i.e., Scheduling
Accommodation)
Support
Groups
Flow Chart: Non-Working Clients With Recent
Work Histories Or Transferable Skills
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Twenty-Seventh Institute on Rehabilitation Issues
Initial Assessment
Rehabilitation Counseling
Needs / Wants to
Work Now
Needs / Wants
Retraining or Further
Education
Vocational
Evaluation
Training and/or
Education
Placement Activities
Resume Writing
Interviewing Skills
Job Development
Maintain
Employment
Adapted with permission from the International Center for the Disabled, Creating a Vocational
Rehabilitation Program for Individuals on Renal Replacement Therapy: A Resource Manual, 2000
Flow Chart: Non-Working Clients Who Need More Structured
And Supportive Rehabilitation Planning
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Adapted with permission from the International Center for the Disabled, Creating a Vocational
Rehabilitation Program for Individuals on Renal Replacement Therapy: A Resource Manual, 2000
Initial Assessment
Rehabilitation Counseling
Placement Activities
Job Placement
Maintain Employment
Resume Writing, Interviewing
Skills & Job Development
Determine Vocational Interests &
Focus Vocational Goals
Referral to
Community
Programs
Vocational
Evaluation
Education and/or
Training
Remediation,
Education and/or
Training
What is RISE?
RISE (Rehabilitation, Information, Support and Empowerment) is a
comprehensive approach to motivating individuals with kidney disease to return
to meaningful activity, which may involve resuming daily routines, employment,
continuing education and/or volunteering. The program offers kidney patients a
chance to assess their skills, values and interests in relation to their quality of life
and career goals. Topics discussed include resume writing, interviewing skills,
rights and responsibilities of individuals with kidney disease, rehabilitation
services, and insurance. RISE recognizes that patients may need to develop the
essential tools to help them become more independent.
A Total Program
RISE consists of four comprehensive, full-day classes:
Day 1 - Taking Charge
Day 2 - Rights and Responsibilities
Day 3 - Making Your Skills Work For You
Day 4 - Developing a Plan
A Collaborative Effort
RISE draws on the knowledge, skills and expertise of caring professionals
and the experience of people with kidney disease. The RISE program involves a
collaborative effort of a specially trained Program Coordinator and two specially
trained Program co-moderators. The Program Coordinator is an employee of the
organization providing the program. One Program co-moderator is an individual
with kidney disease; the other is a professional who has knowledge of rehabilitation
such as a renal health care professional or a vocational rehabilitation counselor.
These individuals work closely with the extensive faculty team and patient presenters
to ensure that the objectives and high standards of the program are met.
The faculty, who provide professional expertise for the program, include
renal social workers, renal dietitians, exercise facilitators, and representatives from
the following organizations and agencies available in the area:
• ESRD Network
• State Vocational Rehabilitation Services
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Twenty-Seventh Institute on Rehabilitation Issues
• Social Security Administration
• Equal Employment Opportunity Commission
• Temporary Employment Services
• Human Resources Consulting Firm
• College Placement Office and Center for Independent Living
People receiving treatment for kidney disease participate as patient
presenters, sharing their experiences related to returning to school, work or
volunteering. These individuals serve as positive role models with whom the
participants can identify. For more information on RISE, call the National
Kidney Foundation at (800) 622-9010.
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What is People Like Us, Live!?
“People Like Us, Live!TM” is an interactive patient education program
which openly addresses the many fears and concerns that patients and family
members face when diagnosed with chronic renal failure, and provides the
objective, unbiased factual information they need in order to make informed
treatment and lifestyle choices. It encourages these individuals to take an active part
in making decisions that will affect their overall quality of life and gives them hope.
A Total Program
People Like Us, Live!TM consists of the following six 1 hour classroom
presentations:
Introduction to Kidney Disease and its Treatment
Hemodialysis - Choosing a Treatment That’s Right For You
Peritoneal Dialysis - Choosing a Treatment That’s Right For You
Transplantation - Choosing a Treatment That’s Right For You
Good Nutrition - Eating Right To Stay Healthy
Coping and Other Lifestyle Issues - Managing Your Kidney Disease
A Collaborative Effort
People Like Us, Live!TM draws on the knowledge, skills and experience of
caring health care professionals and patient presenters who recognize the
importance of the program’s goals and want to play an important role in achieving
them. An MSW nephrology social worker with a minimum of one year of renal
experience serves as Program Moderator and works in partnership with an NKF
Affiliate staff member who serves as Program Coordinator. Both are trained and
certified by the National Kidney Foundation to jointly conduct the program. The
program is designed to be conducted through the local NKF affiliates.
Faculty for each class is drawn from the local renal health care community
and includes renal nurses experienced in home and in-center hemodialysis and
the different forms of peritoneal dialysis, renal dietitians, renal transplant
nurses/clinical coordinators and renal social workers.
Patient presenters are people on treatment and their families who also
participate as members of the faculty by sharing their unique experiences and
perspectives with diagnosis, treatment selection and coping strategies.
For more information about People Like Us, Live!, call the National
Kidney Foundation at (800) 622-9010.
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Club Independence (Georgia only)
Club Independence is a three-day vacation retreat for adults debilitated
with kidney disease to re-energize and renew their independence. These retreats
are a time for fun and freedom. Activities include sports, recreation and leisure
activities as well as a full range of educational classes about kidney disease. There
is only a nominal administration/transportation fee.
Who is eligible to attend?
All kidney patients must meet specific requirements concerning
compliance with medication and dialysis visits. These rules have been established
to ensure that the reward of this vacation weekend is only available to patients
who are taking good medical care of themselves. There are no exceptions.
Eligibility Criteria for Club Independence
1. Compliance with Treatment
• No skipping treatment or dialysis
• Faithfully following orders given by the doctor
• Good glucose control
• Good blood pressure control
2. Controlling Fluid Restrictions Between Treatments
• Keeping fluid gains to a minimum
3. NO Abuse of Alcohol or Illegal Drugs
• No current history of alcohol or illegal drug abuse
4. Compliance with Diet
• Lab work has to be within normal limits
5. Good Attitude at Dialysis Clinic and/or While Dialyzing
6. NO Signing Off Early at Treatment
7. Signature from a Social Worker or a Nurse Saying that the
Patient has been Compliant with the Above Guidelines.
For more information, please see the social worker at your dialysis clinic
or call (770) 452-1539, ext. 11 or outside the Atlanta metro area at (800) 633-2339.
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Springboard (Georgia only)
What is Springboard?
• A program for young adults 19-30 years old with kidney disease or
kidney transplants.
• Four wonderful, free weekends away from home at different locations
across Georgia (held between November and May – on an every other
month schedule).
• A chance to meet other people just like you – other young adults with
kidney disease, facing the same issues as you.
• A program to help you grow and learn about all of the opportunities
that are available for you.
• A place where you can be yourself!
Who is eligible to attend?
In order to be a part of this fun & exciting program you must be:
• between the ages of 19 & 30
• a kidney patient on dialysis, waiting for a kidney transplant or have
already had a transplant
• able to have fun & enjoy yourself
Applicants to the program form a “team of participants” who together
with NKFG volunteers & staff, will travel to all four (4) weekends of the program.
Each weekend is full of exciting things – which is why being at each weekend is
so important. If a participant misses the first weekend, they will be asked to wait
until the following year to begin the program.
How can I learn more?
Think you or someone you know might be interested in Springboard? To learn
more about Springboard, call (770) 452-1539, ext. 20.
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A Report Of The Surgeon General:
Physical Activity And Health For Persons With Disabilities
Key Messages
• Physical activity need not be strenuous to achieve health benefits.
• Significant health benefits can be obtained with a moderate amount of
physical activity, preferably daily. The same moderate amount of
activity can be obtained in longer sessions of moderately intense
activities (such as 30-40 minutes of wheeling oneself in a wheelchair) or
in shorter sessions of more strenuous activities (such as 20 minutes of
wheelchair basketball).
• Additional health benefits can be gained through greater amounts of
physical activity. People who can maintain a regular routine of physical
activity that is of longer duration or of greater intensity are likely to
derive greater benefit.
• Previously sedentary people who begin physical activity programs
should start with short intervals of physical activity (5-10 minutes) and
gradually build up to the desired level of activity.
• People with disabilities should first consult a physician before beginning
a program of physical activity to which they are unaccustomed.
• The emphasis on moderate amounts of physical activity makes it
possible to vary activities to meet individual needs, preferences, and life
circumstances.
Facts
• People with disabilities are less likely to engage in regular moderate
physical activity than people without disabilities, yet they have similar
needs to promote their health and prevent unnecessary disease.
• Social support from family and friends has been consistently and
positively related to regular physical activity.
Benefits of Physical Activity
• Reduces the risk of dying from coronary heart disease and of
developing high blood pressure, colon cancer, and diabetes.
• Can help people with chronic, disabling conditions improve their
stamina and muscle strength.
• Reduces symptoms of anxiety and depression, improves mood, and
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Toolkit
promotes general feelings of well-being.
• Helps control joint swelling and pain associated with arthritis.
• Can help reduce blood pressure in some people with hypertension.
What Communities Can Do
• Provide community-based programs to meet the needs of persons with
disabilities.
• Ensure that environments and facilities conducive to being physically
active are available and accessible to people with disabilities, such as
offering safe, accessible, and attractive trails for bicycling, walking, and
wheelchair activities.
• Ensure that people with disabilities are involved at all stages of
planning and implementing community physical activity programs.
• Provide quality, preferably daily, K-12 accessible physical education
classes for children and youths with disabilities.
• Encourage health care providers to talk routinely to their patients with
disabilities about incorporating physical activity into their lives.
For More Information Contact:
Centers for Disease Control and Prevention
National Center for Chronic Disease Prevention and Health Promotion
Division of Nutrition and Physical Activity, MS K-46
4770 Buford Highway, NE
Atlanta, Georgia 30341-3724
(888) CDC-4NRG or (888) 232-4674 (Toll Free)
www.cdc.gov
The President’s Council on Physical Fitness and Sports
Box SG
Suite 250
701 Pennsylvania Avenue, NW
Washington, DC 20004
www.fitness.gov
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Twenty-Seventh Institute on Rehabilitation Issues