Can My Child Get SSI for Kidney Disease?

Your child’s kidney disease might be severe enough to meet one of several listings for kidney disease and qualify for disability benefits.

By , Attorney · UC Law San Francisco

Kidney diseases in children range from mild, treatable disorders to acute and sometimes life-threatening conditions. Renal disease can be ongoing and progressive (called chronic kidney disease, or CKD). Some of the most common types of kidney diseases in children are present at birth and include:

  • posterior urethral valve obstruction
  • fetal hydronephrosis
  • polycystic kidney disease
  • multicystic kidney disease
  • renal tubular acidosis
  • Wilms tumor
  • glomerulonephritis, and
  • nephrotic syndrome.

Many children suffering from chronic kidney disease can qualify for disability benefits from the Social Security Administration (SSA). Children with debilitating CKD who meet the financial requirements can qualify for Supplemental Security Income (SSI) disability benefits.

Symptoms of Chronic Kidney Disease in Children

The symptoms children experience will vary depending on the cause and type of kidney disease. Symptoms of chronic kidney disease can include any of the following:

  • swelling in the child's hands, feet, legs, or face
  • changes to the volume, frequency, or appearance of urine
  • nausea or vomiting
  • decrease in appetite and weight loss
  • headaches
  • tiredness
  • poor growth, and
  • difficulty concentrating or confusion.

Causes of Chronic Kidney Disease in Children

Kidney disease in children can be the result of:

  • urinary tract infections
  • kidney birth defects ("congenital anomalies")
  • hereditary/genetic conditions
  • nephrotic syndrome
  • systemic diseases like lupus
  • kidney injury, or
  • problems with the urinary system like urine reflux or blockage.

Getting SSI for Children's Kidney Disease

To be eligible for SSI, children must meet Social Security's medical requirements, and their parents must have limited income and resources (assets). Learn more about how a child qualifies financially for SSI.

Once the income and asset requirements are met, the child must meet Social Security's definition of disabled. There are two ways a child with kidney problems can do that:

  • meet the requirements of the listing for childhood kidney disease in Social Security's Listing of Impairments, or
  • prove the kidney disease causes significant functional limitations.

Meeting the Listing for Kidney Disease

The listing for chronic kidney disease found in Section 106 (Genitourinary Disorders) of the listings sets forth the medical requirements that must be met for your child's condition to be considered disabling. Social Security will automatically approve disability benefits for a child who meets the requirements of any of the following seven conditions due to kidney disease:

  • CKD with impairment of kidney function (listing 106.05): Your child's lab reports must show one of the following, on at least two occasions in one year, at least 90 days apart:
    • serum creatinine of at least 3mg/dl
    • creatinine clearance of no more than 30 ml/min 1.73m2, or
    • estimated glomerular filtration rate (eGFR) of no more than 30ml/min/1.73m2.
  • CKD with ongoing dialysis (listing 106.03): Your child's dialysis treatment must have lasted or be expected to last for at least 12 consecutive months.
  • Nephrotic syndrome (listing 106.06): Your child must have anasarca (swelling of the body due to fluid build-up) despite prescribed treatment plus lab results on at least two occasions in one year, at least 90 days apart, showing one of the following:
    • serum albumin of no more than 3.0g/dl, or
    • proteinuria of at least 40 mg/m2/hr.
  • Complications of CKD (listing 106.09): This listing is met if your child has been hospitalized for at least 48 hours three times within a year (at least 30 days apart) for complications such as:
    • congestive heart failure
    • hypertensive crisis
    • stroke, or
    • acute kidney failure.
  • Growth failure due to any chronic renal disease (listing 106.08): Social Security lists very specific indicators of growth failure based on body mass index (BMI). Look at the tables in Section 105.08 to find the age, gender, and measurements that apply to your child.
  • Surgical procedures for a congenital disorder (listing 106.07): This listing is met if your child has had surgical procedures (to the kidneys, bladder, ureters, or urethra) at least three times in the last year, with at least 30 days between procedures. After one year of receiving disability, Social Security will reevaluate your child's residual impairments.
  • Kidney transplant (listing 106.04): Children who have received a kidney transplant will be considered disabled for one year from the date of the transplant. After one year of receiving benefits, Social Security will evaluate whether your child is still disabled due to complications from the transplant.

To determine that your child meets the requirements of the listing, Social Security will need to see compelling medical evidence, including:

  • lab test results
  • doctors' reports, and
  • treatment records (such as the doctor's post-appointment treatment summaries).

If there's not enough medical evidence to make a determination, Social Security might send your child for a consultative examination (CE). An independent doctor hired by the SSA would conduct your child's CE at no cost to you.

Showing Functional Limitations That "Equal" the Listings

Even if your child's condition isn't severe enough to match one of the listings for CKD, Social Security might still approve disability benefits if your child has significant functional limitations due to kidney disease—this is called "functionally equaling the listings."

To get SSI this way, you must be able to show that your child has either "marked" limitations in two out of six areas of functioning or an extreme limitation in one area of functioning. A marked limitation means your child's ability to start, sustain, or finish activities independently is seriously limited. An extreme limitation means that your child's abilities are very seriously limited.

Social Security evaluates the following six areas (called "domains") of functioning:

  • learning and using information
  • paying attention to and finishing tasks
  • interacting with others
  • moving about and manipulating things
  • caring for their personal needs, and
  • health and physical wellbeing.

Because kidney disease can cause learning delays and concentration difficulties, you might be able to prove limitations in the first two domains of functioning: learning and using information and paying attention to and finishing tasks. School records and teacher reports, in addition to medical records, are helpful evidence to support these limitations.

In addition, because kidney disease can cause severe headaches and nausea and can result in repeated hospitalizations, your child's health and physical well-being might also be seriously compromised. Hospital records and school attendance records can help prove the extent of your child's limitations in this domain of functioning.

Lastly, kidney disease can cause growth delays. Such delays might limit your child's ability to move about and manipulate objects or engage in appropriate self-care, compared to peers of the same age. It's also possible for a combination of these conditions to impact your child's functioning in the various domains.

In addition, your child's condition must have lasted (or be expected to last) at least one year or for the rest of the child's life.

Learn more about how to prove your child has marked or extreme limitations in functioning.

How to Apply for SSI Disability for a Child with Kidney Disease

Applying for SSI benefits for a child is a two-step process:

  1. You let Social Security know you need to file an SSI application for a child, and
  2. You complete the application with the help of a Social Security representative (in person or over the phone).

The simplest way to notify Social Security that you want to file a child's application is to complete an online notification form. You can also call Social Security's national office at 800-772-1213. Or you can begin your child's SSI application online by completing the online child disability report.

Once you've notified Social Security of your intent to file an SSI disability application for your child, the SSA will contact you to schedule an interview. The sooner you notify Social Security of your intent to apply for SSI for your child, the sooner your child's benefits can begin. Learn how long it takes to get benefits after Social Security approves your child's SSI.

Updated November 28, 2023

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