Pallister-Killian syndrome is an incredibly rare genetic, though not hereditary, disease that affects development due to extra arms on the twelfth chromosome. Most cases exhibit extreme muscle weakness from infancy onward, heart defects, and intellectual disability. Physically, those with Pallister-Killian have high foreheads, sparse hair, and widely spaced eyes. The extreme muscle weakness can cause developmental delays in speaking, breathing, and movement, among many other aspects.
Pallister-Killian is diagnosed by a physical examination or ultrasound to match the major symptoms and genetic testing that confirms the extra structures on chromosome 12. In most cases, the prognosis is rather poor, but some cases may only exhibit mild symptoms. There is no cure for Pallister-Killian syndrome, though a treatment regimen can be tailored to individual cases. Physical therapies may slow muscle atrophy and special education can address intellectual disability.
In order for someone to receive disability benefits from the Social Security Administration (SSA), they must meet a listing in the blue book. The blue book is a guide for all medical conditions that the SSA considers potentially disabling. There are sections for each region of the body and listings of criteria for each type of condition. There are separate sections in the blue book for adults and children.
Pallister-Killian syndrome is not found in the blue book on its own, but there are listings for other conditions and listing for symptoms of Pallister-Killian under which someone might qualify. These include: 110.08 Catastrophic Congenital Disorder, neurological disorder listings such as motor dysfunction (111.06) or communication impairments (111.09), and mental disorder listings, such as intellectual disability (112.05) or developmental and emotional disorders of newborn and younger infants (112.12).
Social Security disability benefits are well worth the trouble of the application, but the fact is that the application and decision-making process can take a long time to complete-meaning it may be a while before you will be able to receive any financial assistance.
The SSA recognizes that some particularly aggressive and time-sensitive conditions will require benefits almost immediately if they are to make a difference. To provide for this need, it has developed a system of identifying such conditions and expediting the application process for them in a program called compassionate allowances. Under this program, one may be found to have met a listing using only minimal medical information. Because of the nature and severity of Pallister-Killian syndrome, it is one of the conditions on the list eligible to receive compassionate allowances.
The Application Process
When applying, remember that compassionate allowance program is not a separate program from Social Security disability benefits, and you will need to still submit a completed, detailed application.
Prepare for the meeting by gathering genetic tests and physical examination records, treatment records, and any medical information that could show your child's condition prompts a compassionate allowance. A diagnosis will be very helpful, but you will likely need more than that to qualify. You will also have to bring financial information as part of the requirements for specific Social Security disability benefit programs.
It may be a difficult process, but applying for Social Security disability benefits can greatly improve the quality of life for someone with Pallister-Killian syndrome. The compassionate allowances listing may help alleviate some of the struggles, but it is important to remember that the compassionate allowance eligibility does not guarantee approval and you will need to be diligent throughout the application process.