Down Syndrome and Social Security Disability Benefits
What parents need to know.
Whether you are an adult living with Down syndrome or the parent of a child who has been diagnosed with Down syndrome, you likely face a unique set of challenges. Many families affected by Down syndrome find that, among these challenges, is financial instability.
In adults with Down syndrome, lack of employment and required supportive care is often the root of financial problems. In children- a combination of medical bills, educational support, and specialty childcare is often the cause.
Fortunately, the Social Security Administration (SSA) recognizes that individuals with disabilities may face financial difficulties. For this reason, they offer financial assistance in the form of Social Security Disability benefits.
If you have a family member or child who has been diagnosed with Down syndrome, he or she may be eligible to receive disability benefits. The following article will provide you with important background information and will prepare you to begin the application process.
Definition of Disability
In order to qualify for Social Security disability benefits, children and adults living with Down syndrome must first meet the SSA's definition of disability. It is important to note that children and adults have separate definitions. According to the SSA, an adult (typically over the age of 18) is considered to be disabled if he or she meets the following criteria:
- The adult is unable to do any type of work and
- Has a physical or mental condition that has lasted, or is expected to last at least one whole year.
A child (typically under the age of 18) is considered to be disabled if he or she meets the following criteria:
- The child is not earning substantial income and
- Has a physical or mental condition (or a combination of conditions) that very seriously limits his or her activities;
- The condition(s) has lasted, or is expected to last, at least one year or is expected to result in death.
Adults and children who do not meet the appropriate definition will not qualify for Social Security Disability benefits.
Social Security Disability Benefit Programs
After meeting the definition of disability, applicants must meet the technical eligibility criteria of one or both of the disability programs that the SSA provides. These programs are Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).
The first of these programs, SSDI, is typically better suited for adults. This is due to the fact that eligibility for SSDI is based on an applicant's employment history and Social Security tax contributions. Due to a lack of employment history, children usually don't qualify for this program. However, if a parent or guardian of the child is already receiving SSDI benefits than the child may qualify under the parent's record.
Children over the age of 18 (adult children), who were diagnosed with Down syndrome before the age of 22, may also qualify for SSDI benefits under a parent's record. To learn about specific SSDI eligibility requirements, click here.
SSI, on the other hand, offers benefits to disabled individuals of all ages who earn very little income. This program is generally the better option for children and adults who have very little employment history. Eligibility for SSI is based solely on strict financial limits. Because children are not responsible for their own finances, applicants under the age of 18 will likely be evaluated based on a parent or guardian's income. To learn more about SSI financial limits, click here.
Applicants must also meet specific medical requirements in order to qualify for disability benefits. The SSA lists all of these requirements in a document called the Blue Book - which is an official manual of disabling conditions and criteria for eligibility. Within the Blue Book there are separate criteria for adults and children, however when it comes to Down syndrome these criteria are very similar.
Essentially, both listings state that the SSA considers adults and children with non-mosaic Down syndrome to be disabled from birth. However, applicants must use the appropriate medical documentation and records to prove that he or she has, in fact, been diagnosed with non-mosaic Down syndrome. These records should include the following:
- A lab report of karyotype analysis
- A written statement by a treating physician that confirms a diagnosis of Down syndrome
Due to the range of debilitating effects, people with mosaic Down syndrome do not automatically qualify as disabled. In order for an individual with mosaic Down syndrome to qualify for disability benefits, he or she must provide medical documentation that demonstrates limited physical or mental capabilities.
You can access the complete childhood Blue Book listing, here and the complete adult Blue Book listing, here.
Beginning the Application Process
The Social Security Disability application process is different for adults and children. Adult applicants can fill out the necessary paperwork on the SSA's website or in person at their local Social Security office. It is important to note that a caretaker or family member is allowed to apply for disability benefits on behalf of an adult with Down syndrome.
Child applicants, on the other hand, must attend a mandatory interview with an SSA representative. If you are a parent applying on behalf of a child, you should call the SSA immediately to schedule your child's interview. Parents will need to complete two separate forms (Application for Supplemental Security Income and Child Disability Report). Although the first of these forms can be completed online, many parents prefer to complete both at the scheduled interview appointment with the help of an SSA representative.
Receiving a Decision
Once you have applied for benefits, it may be several months before you receive a decision concerning your claim. While you are waiting for a decision, the SSA may contact you for more information. It is important that you respond to these requests as quickly as possible. This will help you to avoid any further delays in the approval process.
Unfortunately, many initial applications for benefits are denied. If your application is denied, you are allowed to appeal this decision within 60 days of receiving your notice of denial. Although navigating the appeals process may seem discouraging, it is often a necessary step toward receiving disability benefits. In fact, many more applicants are approved during the appeals process than during the initial application. Remain persistent in your efforts to ensure that your child or loved one is awarded the benefits that he or she needs.