Posted by Lauren Sparks on August 30, 2013 at 5:15 PMDelete 
The following is a guest post from Molly Clarke about SSI for children with Dravet Syndrome.  Good information!

The Social Security Disability Benefits for Children with Dravet Syndrome

Raising a child with a rare health condition comes with many daily challenges—among these: financial instability. Increased medical expenses and time spent away from work can make it extremely difficult to provide for your child’s everyday needs. If your child has been diagnosed with Dravet Syndrome, you may be eligible to receive Social Security Disability benefits on his or her behalf. These benefits can be used to offset the cost of medical treatments, childcare, and even day-to-day expenses. The following article is intended to provide an overview of the disability benefits available to children who have Dravet Syndrome. It contains much of the information needed to begin the Social Security Disability application process. Understanding Social Security Disability for Children Although the Social Security Administration (SSA) operates two different benefit programs, children under the age of 18 will only qualify for one type of disability assistance—Supplemental Security Income (SSI). SSI is a needs-based program for low-income individuals and families. In order to qualify for SSI benefits, applicants must meet specific technical and medical criteria. Technical eligibility for SSI is solely dependent on an applicant’s income and financial resources. If an applicant exceeds the financial limits set by the SSA, they will not qualify for SSI benefits. Because children do not earn their own income or have financial resources, the SSA will allocate a portion of the household income to the child’s record to determine his or her eligibility. This process is called deeming. To learn more about SSI technical eligibility and financial requirements, visit the following page: SSA's Compassionate Allowances Program Typically, if an applicant is technically eligible to receive SSI benefits, they will then be evaluated based on the standards in the SSA’s blue book. Essentially the SSA’s blue book is an official publication containing the medical requirements for all potentially disabling conditions. Dravet Syndrome, however, is not specifically mentioned in the SSA’s blue book. Instead, Dravet Syndrome is included among the Compassionate Allowance Listings. The Compassionate Allowance initiative was started as a way to expedite the disability claims of individuals with severely disabling conditions. The standard processing time for a disability application can range from three to six months. Compassionate Allowance processing allows individuals with certain conditions to skip the long wait and be approved in as little as ten days. To qualify medically, you will need to provide the SSA with medical evidence that demonstrates your child’s diagnosis and limitations. This may include the following: • A clinical history and examination that describes the diagnostic features of the impairment and physical and cognitive findings. • Imaging studies such as CT, MRI, or PET scans documenting structural changes in the brain. • EEG reports measuring abnormalities in electrical activity in the brain. • Laboratory testing to rule out other causes for seizures and for mutations in the SCN1A gene. To access the complete Compassionate Allowance Listing, visit the following page:" target="_blank"> Applying for Social Security Disability Benefits To initiate the application process, contact the SSA right away to determine whether or not your family falls within the SSI income limits. If you do meet these limits, you will be required to schedule a mandatory interview with an SSA representative. This interview can be conducted in person or by telephone. During the interview you will be required to fill out two different forms. It is important that you complete these forms in as much detail as possible. Any missing or incomplete information may result in the delay or denial of your child’s claim. Once you have completed the initial application process, you may receive a decision in as little as ten days. It is important that you realize that there is the possibility of being denied. This can happen due to lack of supporting medical evidence or because you do not meet the household income limits. If this occurs you have the chance to appeal this decision within 60 days of receiving notice of denial. For more information about Dravet Syndrome and Supplemental Security Income, visit the following page: