Qualifying for Social Security Disability Benefits with Rett Syndrome

Let us give you the lowdown on social security disabilty benefits. Rett syndrome is an extremely rare neurological disorder almost exclusively found in girls. While it is not fatal, most people with the condition require lifelong medical assistance in some capacity. This can be taxing mentally, physically, emotionally, and financially for all affected by the disorder.

If your child has been diagnosed with Rett syndrome, disability benefits may be able to assist you. Supplemental Security Income (SSI) is a Social Security program that provides monthly financial benefits to disabled children and families in need. Continue below to see if the program may be for you.

Technical Qualifications

A common misconception about disability benefits is that all applicants must make a certain amount of money or have enough work history in order to receive it. While this is somewhat true for Social Security disability insurance (SSDI), SSI does not require a work history to qualify. Instead, all it requires of applicants is that they are a) considered “totally and permanently disabled”, and b) have a low-enough income to require monthly assistance. Let’s focus on financial qualifications first.

To measure income, the Social Security Administration (SSA) looks at all of a person’s income, measures it against the monthly income limit, and provides the applicant the difference each month. Because children are often diagnosed with Rett syndrome by 2 or 3, the SSA measures income by their parents instead. This process, called “deeming”, assumes that a certain portion of parent(s)’ income is intended for the applying child, and uses this number to determine eligibility.

For example: say you are a single parent raising an only child with Rett Syndrome. In order to qualify, you must make less than $3,057/month in earned income (income earned by working) in order for your child to qualify. In contrast, say you and your spouse are raising four children, one of whom has Rett Syndrome. In this case, you and your spouse’s combined earned income limit would be $4,892; anything less than this would technically qualify for benefits. It is also important to know the difference between “earned” and “unearned” income here — any monthly income earned from non-work sources (unearned income) may reduce your monthly income limit. To assess your income, you can consult the SSA’s income calculator on their main website.

Even if you feel your income may disqualify you from receiving benefits, it may still be in your best interests to apply, just in case.

Medical Qualifications

As mentioned before, the biggest medical requirement for SSI qualification is that the applicant is considered “totally and permanently disabled”. This is a phrase used by the SSA to describe someone whose physical or mental disability is very severe and will either a) last 12 months or longer, or b) result in death. To determine which cases fit this description, the SSA compares all applicants’ diagnoses to the “Blue Book”, which contains all Social Security-approved disabilities.

Rett Syndrome is categorized under Section 110.08 in the Blue Book as a “catastrophic congenital disorder”. In order to qualify, applicants must demonstrate a genetic disorder that seriously interferes with development or functioning. Because a Rett Syndrome diagnosis immediately qualifies here, it is rare for an applicant with this condition to not qualify.

However, there is an additional program that Rett syndrome applicants may qualify for as well. Called “Compassionate Allowances”, this program speeds up the claims process for applicants with very severe conditions. While most normal applicants must wait a period of multiple months to receive notice on their application, applicants with compassionate allowances hear back within one or two months and will begin receiving payments as soon as possible. To qualify, applicants must be sure they provide as much information on their Rett Syndrome as possible (medical records, test results, physician notes, medication lists, hospitalization records, etc.) to demonstrate need.

Starting the Application

Applications for SSI are currently unavailable online. However, it is recommended that parents or guardians fill out the Child Disability Report on the SSA’s main website prior to filling out the application. This report helps the SSA predetermine your eligibility and also gives your child’s physician(s) permission to share medical information. The SSA website also contains FAQs and other helpful forums, should you have questions about the application process.

Once you’re ready to begin, you can call your local Social Security office to set up an appointment for an in-person application.


This article was written by the Outreach Team at Disability Benefits Help. They provide information about disability benefits and the application process. To learn more, please visit their website at www.disability-benefits-help.org or by contacting them at help@ssd-help.org.

The Rocky Mountain Rett Association is not affiliated with Disability Benefits Help and is not endorsing their services.