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Social Security Benefits And Disability Programs For Those Battling With Kidney Disease

The following questions are those most frequently asked by persons who are surviving one of the many forms of kidney disease, and who are in search of some form of benefits from the Social Security Administration.

Must a person be disabled, or unable to work, in order to receive help from the Social Security Administration?

The simple answer is "no." Although it is true that many individuals who are unable to work receive benefits from the Social Security Administration, a person need not be disabled to qualify for help. Persons with kidney disease can qualify for special assistance even if he/she is still working. (See the "Red Book," A Summary Guide to Employment Supports for Persons with Disabilities under the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) Programs.

What Does this Assistance Consist Of?

Medicare coverage, both part A (hospital insurance) and part B (medical insurance). For those who qualify, Medicare covers dialysis, kidney transplantation, and even immune suppressive drug therapy. Coverage varies depending upon whether the services are provided in-home or in a hospital, and depending upon what other insurance coverage (such as employer group health plan coverage) may exist. More information concerning the details of coverage may be obtained by calling 1-800-MEDICARE (1-800-633-4227).

Who is Eligible for Medicare Coverage?

You can get Medicare Part A no matter how old you are if your kidneys no longer work and you need regular dialysis or have had a kidney transplant, and:

  • You have worked the required amount of time under Social Security, the Railroad Retirement Board, or as a government employee; or
  • You are getting or are eligible for Social Security or Railroad Retirement benefits; or
  • You are the spouse or dependent child of a person who has worked the required amount of time to be eligible for Medicare or who is getting Social Security or Railroad Retirement benefits.

If I am Eligible for Medicare Coverage, When would Coverage Begin?

When you first enroll in Medicare based on ESRD (permanent kidney failure) and you are on dialysis your Medicare coverage usually starts the fourth month of dialysis treatments. For example, if you start getting your hemodialysis treatments in July, your Medicare coverage would start on October 1.

If you are covered by an employer group health plan, your Medicare coverage will still start the fourth month of dialysis treatments. Your employer group health plan will pay first on your health care bills and Medicare will pay second for a 30-month coordination period (this means that if your employer plan does not pay 100% of your health care bills during the 30 month period, Medicare may pay for the remaining costs). At the end of the coordination period, Medicare will pay first for all Medicare-covered services.

Important: Medicare will not cover surgery or other services that are needed to prepare for dialysis (such as surgery for a blood access) if it is done before Medicare coverage begins.

What if my Condition is Creating an Emergency Need for a Transplant or Dialysis?

Can Medicare coverage start earlier? Medicare coverage can start as early as the first month of dialysis if . . .

  • You take part in a home dialysis training program in a Medicare-approved training facility, to teach you how to give yourself dialysis treatments at home;
  • You begin home dialysis training before the third month of dialysis; and
  • You expect to finish home dialysis training and give yourself dialysis treatments.
    Talk to your doctor about your dialysis treatment options.

What if I Need a Kidney Transplant?

Medicare coverage can start the month you are admitted to a Medicare-approved hospital for a kidney transplant, or for health care services that you need before your transplant if your transplant takes place in that same month or within the two following months.

Medicare coverage can start 2 months before the month of your transplant if your transplant is delayed more than 2 months after you are admitted to the hospital for the transplant or for health care services you need before your transplant.

Example: Mrs. Perkins was admitted to the hospital on May 25th for some tests she needed before her kidney transplant. She was supposed to get her transplant on June 15th. However, her transplant was delayed until September 15th. Therefore, Mrs. Perkins' Medicare coverage will start in July, two months before the month of her transplant.

When Does the Medicare Coverage End?

If you have Medicare only because of kidney failure, your Medicare coverage will end:

  • 12 months after the month you stop dialysis treatments, or
  • 36 months after the month you had a successful kidney transplant.

Your Medicare coverage will not end if:

  • You have to start dialysis again or get a kidney transplant within 12 months after the month you stopped getting dialysis, or
  • You continue to get dialysis or get another kidney transplant within 36 months after a transplant.

What if I do not Need Dialysis or a Kidney Transplant?

I do not need dialysis or a kidney transplant, but I nonetheless suffer from a debilitating form of kidney disease. Can I still get help from the Social Security Administration?

The simple answer is "yes," but you must be "disabled." In such a case, the afflicted individual (called a "claimant") must file a claim for disability benefits of one kind or another.
What does the term "disability" mean to the Social Security Administration?

For purposes of entitlement to disability benefits, the term "disability" is defined as the inability to engage in any form of substantial gainful activity (e.g. work) by reason of any medically determinable physical or mental impairment which has lasted (or can be expected to last) for a continuous period of 12 months or more, or which can be expected to result in death.

It is important to note that the Administration's definition of "disability" precludes a person from being able to do any work, not just the work they have done in the past. A warehouse worker who has hurt his back, for example, may not be able to continue working in a warehouse (which requires heavy lifting), but he may be able to sit at a table assembling small items.

The disability must also be "medically determinable," meaning that symptoms alone will not justify a finding of disability. If a person's hands shake, objective medical evidence of the existence of a condition which would cause a person's hands to shake must exist.

What Programs are Available to Disabled Persons Under the Social Security Law?

The Social Security Administration administers two programs which provide financial benefits to disabled persons. One is the Social Security Disability Insurance program, also known as the "Title II" or "DIB" (for "Disability Insurance Benefits") program. The other is the Supplemental Security Income program, also known as the "Title XVI" or "SSI" program.

Although there are two programs, the medical standard for determining if a person is disabled within the meaning of the law is the same for both programs. Accordingly, people often apply for benefits under both programs. Under certain circumstances, a person may qualify for payments under both programs.

  • An individual suffering from a medical disability may also qualify as a widow or widower.
  • Under these circumstances, the earnings of the deceased spouse are used to determine the benefit amount.

What are the Requirements for the "Title II" or "DIB" Benefit Program?

This program is designed for workers who have contributed to the Social Security fund during their working lives. It works like a disability insurance policy. In fact, that is exactly what it is.

To qualify, a person must be both disabled and "insured." In simple terms, "insured" means the employee must have worked for five years out of the ten year period before their disability forced them to stop working.

Once a person has worked for five years in a ten year period, they are "insured." A worker remains insured for five years thereafter, whether or not they continue to work. If a person becomes disabled during the time they are insured, he or she qualifies for disability benefits under Title II of the Social Security Act.

The Social Security Administration keeps detailed records on a citizen's employment history. If you wonder whether you are insured, a simple phone call to a local SSA office can get you an answer in five minutes.

What are the Requirements for the "Title XVI" or "SSI" Benefit Program?

The SSI program is designed to provide a minimum level of income to persons who are aged, blind or disabled, and who are of extremely limited financial resources. To qualify, a person must be both disabled and have no financial resources beyond certain amounts specified in the law.

Generally, a person must have less than $2,100 in cash ($3,200 for a family), and no assets which are convertible into cash. The Social Security Administration will not count a person's home in which they are living as part of that person's financial resources. Nor will the Administration count a person's car against them (as a car is needed for work.) But a second car will be so counted, along with stocks, bonds, personal property, a second home, IRA accounts, insurance policy proceeds, and almost everything else of any value.

A disabled person without financial resources qualifies for disability benefits under Title XVI of the Social Security Act.

How does the Social Security Administration Regard Kidney Disease?

The Social Security Administration knows that kidney disease can be a medical problem with devastating manifestations. Congress has written special provisions into the law regarding kidney disease. These provisions are contained in that section of the Social Security Law known as the "listings."

That section of the law is so named because it is really a "list" of possible disabilities - including several different neoplastic diseases and malignancies. This section of the law is more properly referred to as the Administration's Listing of Impairments.

An entire section of the Listing of Impairments (section 6 to be exact) is devoted to genito-urinary system impairments. Two different manifestations of various kidney diseases are described in section 6, and an individual battling either one of them (in the manner described) is presumed to be disabled.

The listings set a very severe standard. Only the most advanced kidney diseases will reflect the medical treatment or blood test values set forth in the listing. Generally, a person must suffer from kidney disease with a very significant and very severe manifestation to meet the requirements of Listing 6.00.

What if the Form of Kidney Disease is not as Severe as the Listings?

What if a person is struggling with some form of kidney disease, but not as severely as is required by any of the "listings" which apply to kidney diseases? Can such a person still qualify?

The answer is yes.

Any person who is prevented from working by his or her medical condition may disabled and qualified for benefits. If you struggle with kidney disease and cannot work, you are entitled to help from Social Security. The problem you face is a problem of proof. You must prove that your condition would prevent you from working.

How Will the Social Security Administration Decide Whether my Condition Prevents me From Working?

The Social Security Administration will conduct a very specific analysis to determine whether your medical condition prevents you from working. That analysis consists of asking five questions.

  • First, the Administration will ask "are you working?" If you are working, you are not disabled, and your claim for benefits will be denied.
  • Second, the Administration will ask "do you actually suffer from a form of kidney disease?" You must present medical records and test results which show that you actually suffer some manifestation of the disease. However, the mere fact of a diagnosis does not automatically qualify you for benefits. The Administration will go on to ask the other questions which follow.
  • Third, the Administration will ask itself if your medical records and test results indicate that the kidney disease is severe enough to meet the requirements of any of the listings in section 6 of the Administration's Listing of Impairments. If so, you automatically qualify. If not, the Administration will go on to ask the other following questions.
  • Fourth, the Administration will ask if the disease (or the side effects of the treatment you are undergoing) would prevent you from returning to the work that you have done in the past. If you are not so sick so as to prevent you from returning to your former work, you are not disabled, and your claim will be denied. If you are unable to return to any of your former jobs, then the Administration will ask one more question:
  • Fifth, is there any other work you are capable of doing? If so, you will be denied. If not, you will be granted disability benefits.

What if I Cannot Work, but the Social Security Administration Denies my Claim for Benefits?

Don't give up. The Social Security Administration turns down many qualified applicants. You can appeal if you are denied, and many persons receive benefits only after they appeal.

If you are denied benefits after filing an application, your first appeal is called a "request for reconsideration." By filing this appeal, you ask the Social Security Administration to "reconsider" your application to see if they have made a mistake.

If you are denied a second time, you can request a hearing before a judge who is familiar with the law, and who does not work for the Social Security Administration. He will decide if the Social Security Administration properly analyzed your claim for benefits.

The important point is don't give up. These days, the federal government does not have a lot of spare cash; and Congress feels that the Social Security Disability System is expensive and needs to be carefully controlled. This leads to a lot of institutional "inertia" which causes many deserving claims to be denied. But statistics show that the deserving claimant will be awarded benefits if he or she persists.

If I Suffer from Kidney Disease, and if I Really am Too Sick to Work, What Would an Attorney Advise Me to Do?

Two things:

  1. Get your doctor involved. The most important of the legal issues surround your medical condition. Lawyers and judges rely primarily on doctors to interpret the severity of your medical condition and to determine how it would limit you. Your doctor is your best expert. He has treated you and knows your condition best. So have a "heart to heart" conversation with your doctor. Get him or her "committed" to helping you by writing a report about your condition, providing medical records promptly when they are requested, and by working with your attorney when the need arises. Any lawyer will tell you that, in cases such as these, a helpful treating physician is your single most powerful asset.
  2. Be prepared to recognize and deal with the emotional aspects of your condition. Battling with kidney disease is a frightening thing. One often feels alone and isolated. Often the disease process, along with a resulting inability to work, leaves an enormous emotional "footprint" on an individual's life.

The reality is that any disabling condition, whether it be blindness, heart disease, multiple sclerosis, or kidney disease, will always cause a lot of emotional trauma. And "trauma," wherever it leaves its footprint, is potentially harmful.

Kidney disease survivors, perhaps because of what they must go through to find a physician who can help them, are often confused, uncertain, afraid, depressed, lacking in self-esteem, hopeless, anxious and (if they are unable to work) financially stressed in the extreme. Such elements in any person's life can, and often do, create even further physical problems, which in turn exacerbate the emotional situation, until the patient is in a "downward spiral" which can often only be broken with professional help.

So if you find yourself seeking treatment for your emotional difficulties -- or if someone (say your doctor) says that you should -- don't feel embarrassed. Don't feel like you must hide this treatment from Social Security. Your emotional condition effects your ability to work also. Problems which you experience, and which restrict your ability to function, are significant elements of the determination of disability. Furthermore, your Social Security claim is protected by the federal privacy laws. No one can get access to these records without your permission.
Do I need a lawyer to help me with my claim?

Technically, a lawyer is not required. The SSA will provide assistance filling out the necessary forms. The judges, in most cases, make attempts to assure a fair hearing of the claim.
Nonetheless, persons in pursuit of disability benefits face great legal challenges. The Social Security Act is a complicated law, and many of its provisions revolve around close interpretations of words such as "substantial" or "marked" or "significant." Evidence should be presented in the best possible light, and in a form which is acceptable to the Administration, or it may be ignored. Statistics show that a person who is represented by an attorney has a much better chance of obtaining benefits.

Most attorneys who work exclusively on Social Security cases will take a case on a "contingency" basis, meaning that no fee is charged unless the case is won. The SSA must approve any fee charged by a representative, so clients are assured that the amount of fee reflects the work involved. With these protections, a claimant is well advised to consult an attorney when seeking disability benefits.

Where to Get More Help

End Stage Renal Disease ("ESRD") Networks and State Health Insurance Assistance Program ("SHIP"). To get phone numbers, call 1-800-MEDICARE (1-800-633-4227, TTY/TDD: 1-877-486-2048 for the hearing and speech impaired) or look on the Internet at for helpful contacts.


There is assistance available from the Social Security Administration and from Medicare if you have kidney disease. The above article offers some suggestions about what kind of assistance is available, contact the Social Security Administration and Medicare to find more information. Do not take "no" for an answer without asking for reconsideration. If you feel you have been wrongly denied, do not hesitate to contact an attorney.

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