Applying for Disability on Behalf of a Child with Rett Syndrome

By Social Security Disability Help 

May 25, 2016

Applying for Disability on Behalf of a Child with Rett Syndrome

Individuals with Rett syndrome (RTT) automatically meet the Social Security Administration’s (SSA’s) medical eligibility requirements for disability benefits. You’ll need to submit an application and back up your daughter’s claim with appropriate medical records, but a quick review by the SSA is guaranteed, since RTT is included in the Compassionate Allowances (CAL) program. 

CAL applications are expedited by the Disability Determination Services (DDS) office, and minimal medical documentation is necessary for proving disability. Getting benefits however also requires a review of your financial information, including income and assets for your household. This is because most children who receive disability are approved through Supplemental Security Income (SSI), which is “need-based” and therefore has strict financial resource limits for qualifying. 

If your son or daughter is approved for SSI, you’ll be able to count on receiving a monthly benefit payment to cover their everyday and special needs. Benefits can be used for everything from clothing, food, and shelter expenses to specialized childcare, medical care, and education costs.

Medically Qualifying with Rett Syndrome

As a CAL program condition, Rett syndrome applications are flagged by DDS staff for quick review. These applications often make it through the SSA’s eligibility determination process in just a few weeks. 

If you’ve had genetic testing done and your child is among those for whom MECP2 gene abnormalities are present, then  he or she can qualify for benefits under the SSA’s disability listing 110.08B. If genetic testing hasn’t been completed or isn’t positive for the RTT gene marker, your child can still qualify for benefits under other disability listings, like 111.06A & B or 112.02.

Disability listings can be difficult to translate as a non-medical professional. Your child’s doctor can help you understand the medical records required by the SSA. He or she can also help you with the disability application by ordering appropriate tests and by providing records as quickly as possible to the DDS office. 

Financial Eligibility and SSI Benefits

Because SSI is need-based, the SSA must look closely at your household’s income and assets. They will review the finances of both parents and “deem” a portion of income and other financial resources to your child. The deeming process only assigns percentages of income and assets as available to care for a disabled child however, which means that many children are able to meet financial threshold limits and receive SSI benefits. Additionally, the SSA only considers some income and assets “countable.” This in turn makes even more children eligible to receive the support they need through disability benefits. 

Disabled Adult Children 

When your child reaches 18 years of age, their eligibility for benefits will be re-evaluated. She must qualify under an adult disability listing (like 11.17A or 12.02), but they can still continue to receive SSI. 

Notable, once a child reaches the age of 18, his or her parents’ income and assets aren’t counted any longer when determining SSI eligibility or monthly payment amounts. This means your child’s benefits may actually increase at age 18. It also means that even if they couldn’t qualify financially as a minor child, they will likely become eligible for benefits as an adult, because your income and financial resources are no longer a consideration. 

Some disabled adult children are also able to receive Social Security Disability Insurance (SSDI) benefits under the work record of a parent or legal guardian. To qualify, a child must have a parent or legal guardian who is also receiving disability, getting Social Security old age/retirement benefits, or who has passed away and left survivor benefits available. 

Submitting an Application

Because you’re applying for SSI, you’ll need to either call the SSA at 1-800-772-1213 or visit the local branch office. You’ll participate in an interview, during which an SSA representative takes all your information and completes your child’s application for you. You’ll need your financial records, contact information for their doctors, and copies of any medical records you may have in your possession. If your child attends school, you’ll need their education records too.