Childhood Lupus and Disability (SSI)

The basics of the medical and mental criteria for getting disability benefits for your child with lupus.

Systemic lupus erythematosus (SLE), or lupus for short, is an auto-immune disease that affects multiple organs or body systems such as the joints, kidneys, lungs, and, intestines. Some children have mild symptoms of achiness, fever, and fatigue, while others can suffer progressive lung and kidney problems. In addition, some children experience emotional problems or developmental delays related to lupus.

Do Children With Lupus Qualify for SSI?

Children with SLE may be eligible for SSI (Supplemental Security Income) if their parents’ income and assets are low enough. When a child with lupus turns 18, if a parent is collecting Social Security disability income (SSDI) benefits, the child will become eligible for SSDI as well (at that point, however, the child would  apply for benefits under the adult listing for lupus). The SSA details what symptoms of lupus a child must have to qualify for SSI.

This article discusses disability benefits for children with lupus. The rules are different for adults (anyone over 18); see Nolo's article on  SSDI or SSI for adults with lupus.

Qualifying for SSI for Lupus as a Child

The SSA’s listing for lupus in children is listing 114.02. There are two ways your child can satisfy the listing: by fulfilling certain medical criteria or by fulfilling certain mental criteria.

Medical Criteria for Childhood Lupus

Your child’s lupus must affect two or more body systems or organs, such as the kidneys, lungs, or heart. At least one of your child’s body systems or organs must be affected to a moderate degree of severity or more. Affected organs/body systems can be:

  • renal (decreased kidney function)
  • respiratory (inflammation of lung tissues)
  • cardiovascular (inflammation of heart tissue or blood vessels)
  • neurologic (seizures)
  • hematologic (decrease in red blood cells, white blood cells, or platelets), or
  • inflammatory arthritis (joint pain in fingers, hands, wrists, or knees).

In addition, your child must have two of the four of the following constitutional problems:

  • fever with no other cause
  • severe fatigue (frequent exhaustion and low activity)
  • malaise (frequent feelings of illness and bodily discomfort), or
  • involuntary weight loss.

Mental Criteria for Childhood Lupus

The developmental/emotiona/mental requirements vary depending on your child’s age.

Age three to eighteen.  Your child must have at least two of the following:

  • Marked impairment in age-appropriate cognitive/ communicative function.
  • Marked impairment in age-appropriate social functioning.
  • Marked impairment in age-appropriate personal functioning.
  • Marked difficulties in maintaining concentration, persistence, or pace.

Your child’s developmental status must be documented according to  SSA’s listing 112.02B2.

Age one to three.  Your toddler must have one of the following:

  • Gross or fine motor development typical of children half the child's chronological age.
  • Cognitive/communicative function typical of children half the child's chronological age.
  • Social function typical of children half the child's chronological age.
  • Combined function typical of children two-thirds of the child's chronological age in two or more of the above areas.

Your toddler’s developmental status must be documented according to  SSA’s listing 112.02B1.

Birth to age one.  Your baby must have at least one of the following:

  • Motor development typical of children half of the child’s chronological age.
  • Cognitive/communicative functioning typical of children half of the child’s chronological age.
  • Failure to sustain ongoing, reciprocal social interaction, as evidenced by either:
    • inability by six months to participate in vocal, visual, and movement-based social exchanges (for example, trading facial expressions)
    • failure by nine months to communicate basic emotional responses, such as cuddling or exhibiting protest or anger, or
    • failure to attend to a caregiver’s voice or face or to explore an inanimate object for a period of time appropriate to the infant’s age.
  • Combined function typical of children only two-thirds of the child’s chronological age in two or more areas (that is, social, motor, and/or cognitive/communicative).
  • Apathy, demonstrated by a lack of response to either:
    • visual stimulation
    • sounds, or
    • touch.
  • Overexcitability or fearfulness, demonstrated by a grossly excessive response to either:
    • visual stimulation
    • sounds, or
    • touch.

Your infant’s developmental status must be documented according to  SSA’s listing 112.12.

Applying for SSI for Lupus

To set up an appointment to submit an application for SSI through your local SSA office, call the SSA at 800-772-1213. It will likely take three to six months for the SSA to determine whether your child is eligible for disability benefits. If your child is denied SSI, contact a disability lawyer with experience with lupus cases. If the lawyer wins your appeal, he or she may take percentage of your child’s SSI back payments. If the lawyer loses the appeal, you won’t owe anything.

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