The Snow Foundation

When a child is diagnosed with a serious illness the parents are plunged into a new reality of having to take care of their child but also still maintain the household. This can be difficult to do, especially if one parent has to stop working to take care of the child. Social Security disability benefits and Supplemental Security Income (SSI) benefits can ease the financial stress on parents. If your child has been diagnosed with Wolfram Syndrome, they may qualify for Social Security benefits.

What Is Wolfram Syndrome?

Wolfram Syndrome is a genetic disorder that is fairly rare but can cause serious medical issues. Wolfram Syndrome typically causes children to have diabetes and optic nerve atrophy. This illness also can cause headaches, difficult swallowing,), bladder problems, loss of senses of smell and taste, problems with balance and coordination, muscle spasms and seizures, gastrointestinal problems, and irregular breathing. Depression and anxiety can also be caused by Wolfram Syndrome.

How to Medically Qualify For Disability Benefits With Wolfram Syndrome
Most of the time in order to qualify for disability benefits or Supplemental Support Income Benefits a child must have an illness that is listed in the SSA’s Blue Book and meet all the requirements set by the SSA for that condition. There is no listing in the Blue Book for Wolfram Syndrome though because it’s so rare. Children who have Wolfram Syndrome can still qualify for disability benefits or SSI benefits by meeting the listing requirements for one the symptoms of Wolfram Syndrome. There are several listing in the Blue Book that children who have Wolfram Syndrome may be eligible to qualify under such as:

Diabetes
Vision Loss
Hearing Loss
Depression
Anxiety

For example, in order for a child to qualify for disability or SSI benefits under listing for Vision Loss the parents would need to submit medical records showing that the child’s vision meets the requirements for one of these Blue Book listings:

(2.02) Loss of central visual acuity– Vision must be no better than 20/200 in your better eye.
(2.03) Contraction of the visual field in the better eye– A doctor’s report of the child’s visual field must
show that the diameter of the visual field is no greater than 20-30 degrees.
(2.04) Loss of visual efficiency, or visual impairment– To qualify through this listing the child must
have vision in their better eye that is no greater than 20/200 when wearing corrective lenses.

Other Qualifications For Disability Benefits
Supplemental Security Income benefits from the SSA are for low-income families. In order for children to qualify for SSI benefits the parents will need to submit W-2s or Federal tax returns showing that their total household income falls under the income cap set by the SSA. The current income cap based on household size can be found here.

Starting the Disability Application
You can complete an application for disability benefits or SSI benefits for your child online through the SSA’s website. If you need help filling out the forms or you have questions about what documents, you need you can make an appointment at your local SSA office. If you need help filing for disability, Someone there will help you through the application process.

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