Compassionate Allowance - Pallister-Killian Syndrome

A rare genetic disorder in which extra chromosomes disrupt normal development, Pallister-Killian Syndrome (PKS) causes severe developmental delays, communication deficits, and a range of serious, often life-threatening complications.

The Social Security Administration (SSA) understands the inherently debilitating nature of this disorder, which is why it’s part of the Compassionate Allowances (CAL) program. CAL ensures the review disability applications filed for PKS happen quickly and it’s uncommon for one to be denied for medical reasons.

Disability Benefit Programs

The SSA has two disability programs of which you should be aware:

  • Social Security Disability Insurance (SSDI) – available to disabled workers, and under limited circumstances, their dependents.
  • Supplemental Security Income (SSI) – available to any qualifying individual, regardless of age or work history, though there are strict financial eligibility rules that must be met.

Although disabled children are sometimes able to receive SSD benefits under the work credits of a parent, guardian, or grandparent, SSDI benefits are not usually available for kids. SSI benefits on the other hand are commonly available for children with disabilities.

Compassionate Allowances

The SSA’s standard review procedures can take months. For certain conditions, that time is cut down to just a few weeks through special designation in the CAL program.

CAL allows disability determination staff to process claims more quickly, with applications fast tracked for review. The amount of medical evidence required for eligibility is kept to a minimum. That being said, applicants must still complete the full SSD application process and have the right medical documentation to support their claim for benefits.

Required Medical Evidence for Pallister-Killian Syndrome

A PKS application can be approved with only the following medical documentation supporting it:

  • A detailed medical history, documenting the clinical features of the syndrome.
  • Physical examination notes, supporting the diagnosis and describing the extent of complications the child experiences. Clinical history and examination that describes the diagnostic features of the impairment.
  • Chromosomal analysis results, confirming the diagnosis through the presence of extra chromosomes

Although these are the only medical records required, the SSA may still consult listing in the Blue Book to confirm the severity level of the child’s PKS. This is necessary, as some children with the condition do not suffer the same severe effects. They instead may only have limited developmental delays and physical complications.

The Blue Book is a manual of impairments and the medical evidence required for each condition. Listings that may apply to PKS claims include any or all of the following:

  • Section 110.08 – Catastrophic congenital disorders
  • Section 111.06 – Motor dysfunction due to any neurological disorder
  • Section 111.09 – Communication impairment associated with a neurological disorder
  • Section 112.05 – Intellectual disability
  • Section 112.12 – Developmental and emotional disorders of newborns, up to the age of one year

The SSA generally only requires the medical evidence of an applicant meets just one of these listings. That listing is usually the one that reflects the body system in which the most severe complications of PKS are present.

Submitting an Application

Applying for benefits on behalf of a child usually means submitting an application for SSI only. These applications must be done in person at the local SSA office or with another authorized SSA representative. The application is completed during a personal interview, during which the SSA rep will fill out the required forms for you and take copies of the supporting documents and medical records you have. To schedule an appointment for a personal interview, call 1-800-772-1213.