COSTELLO SYNDROME & SSD BENEFITS

At Cannon Disability Law, we help families deal with complex process of filing for SSI benefits. When a child has a rare condition like Costello Syndrome, it can be difficult to know where to begin. Costello Syndrome causes a wide range of physical and developmental challenges, many of which can qualify the child for SSI benefits through the Social Security Administration (SSA). Understanding how the SSA evaluates this condition can make the difference in building a strong SSI case.

To win SSI benefits your child must have a severe medical condition that will last longer than 12 months. Costello syndrome meets this criteria. However, the income of the family must also meet SSA’s income and asset rules. The SSA will look at the income of both parents, savings, and they will also take into account that you may have other children.

Individuals who receive SSI benefits cannot have more than $2,000 in resources. Couples cannot have more than $3,000 in combined resources (even if just one person receives SSI benefits). Resources are things you own and that belong to you. For example, cash or savings in the bank are resources. Likewise, so are investments, land, cars, motorcycles, or any other items you can sell to pay for food and shelter. You can figure out if you meet SSA’s resource rules by using this SSI chart on the SSA website.

WHAT IS COSTELLO SYNDROME?

Costello Syndrome is a rare genetic disorder caused by mutations in the HRAS gene. It affects fewer than one in a million people, yet its impact is significant and lifelong. Children born with Costello Syndrome often have distinctive facial features, loose skin on the hands and feet, and problems like joint laxity or scoliosis. Heart conditions, such as arrhythmias and hypertrophic cardiomyopathy, are also common. These medical problems usually require frequent visits to the doctor and ongoing treatment. All of which can place a heavy burden on families.

DEVELOPMENTAL DELAYS AND FUNCTIONAL LIMITS

In addition to physical health issues, most children with Costello Syndrome experience developmental delays. Speech and motor development may be significantly behind their peers. Many require assistance with walking, eating, dressing, and communication well beyond early childhood. Some children also experience intellectual disabilities, learning challenges, and behavioral issues. These functional limitations can affect a child’s ability to engage in normal daily activities and make it difficult to attend a traditional school setting without special education services.

Because of these delays, children with Costello Syndrome often meet the SSA’s definition of disability. If your child has this condition and you meet the income and asset limits, then you may qualify for Supplemental Security Income (SSI). SSI provides monthly financial assistance for children with severe medical conditions that impact their ability to function like other children.

HOW THE SSA EVALUATES COSTELLO SYNDROME

The SSA does not have a specific listing for Costello Syndrome in its Blue Book. However, this does not mean your child cannot qualify. Instead, the SSA will look at how the condition impacts six key areas of function for children. Those areas are: acquire and use information, the ability to attend and complete tasks, interact and relate with others, moving about and manipulating objects, care for oneself, and maintain health and physical well being.

If your child has marked or extreme limitation in any of these areas due to Costello Syndrome, then they may meet the criteria under the SSA’s “functional equivalence” rules. In some cases, a child with Costello Syndrome may meet a specific listing, such as a listing for congenital heart disease or developmental delays. A strong claim will include detailed medical records, genetic test results, and evaluations from medical experts, speech therapists, and teachers.

HOW TO BUILD A STRONG SSI CASE FOR COSTELLO SYNDROME

To win you SSI benefits for Costello Syndrome, you must provide compelling medical evidence. It’s not enough to simply have a diagnosis—you must show how the condition limits your child’s ability to function in daily life. We understand what the SSA is looking for. Our job is to work closely with families to collect the right records and present the information in a way that supports the claim.

Many families are surprised to learn that initial SSI applications for children are often denied, even with a serious diagnosis. That’s why it’s important to work with an SSI attorney who has experience handling appeals and represent your child’s interests. We help our clients understand the appeals process. Also, we file appeals for you and request your hearing, We ensure you are ready to present your case.

COSTELLO SYNDROME IS A COMPASSIONATE ALLOWANCE

Costello Syndrome qualifies as a Compassionate Allowance condition under the Social Security Administration’s guidelines, which allows for faster review and approval of disability claims. The Compassionate Allowances program was created to identify medical conditions so severe that they meet the SSA’s standards for disability.

Have a medical condition on the special program speeds up the application process. But, it does not mean that simply having Costello Syndrome is enough to win benefits. You must still submit medical records that demonstrate the effects of your condition. For Costello Syndrome, this includes genetic testing, reports from doctors, and records that describe the delays and physical symptoms. This includes any serious symptoms such as cardiomyopathy, feeding difficulties, or neurological problems.

In addition, evidence such as therapy reports, school evaluations, and developmental testing can help show how the condition affects your child’s daily life. The SSA will examine how the condition limits the child’s ability to function in age appropriate ways. We work with you to ensure that every necessary piece of evidence is in your file and the claim is not denied due to missing records. Our goal is to help children with Costello Syndrome receive the benefits they need as quickly as possible.

HOW TO APPLY FOR SSI BENEFITS FOR COSTELLO SYNDROME

If you child has Costello Syndrome, then you should file an SSI application. You can file your application for SSI benefits online, no matter where you live. If you prefer not to file an application online, then you can call and start an application over the phone. Call the SSA at 800-772-1213. There, you can speak with a Social Security worker. Likewise, you can make an appointment to apply in person at your local Social Security office.

The SSA will issue your first SSI payment for the first full month after your is found disabled. However, your SSI benefits may not be the same amount every month. Your SSI amount depends on your other income and living arrangements. If those change, so does the amount of your SSI payment.

For example, if you report that your mother is paying your rent, then that lowers your SSI amount. But, if that changes, and you report that you are now paying rent to your mother, then your SSI amount goes back up.