Prader-Willi Alliance of NY, Inc.244 5th Avenue, Suite D-110New York, NY  10001

Telephone: (800) 442-1655
Email: alliance@prader-willi.org

Chapter of PWSA (USA)

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Prader-Willi Syndrome and Supplemental Security Income

Prader-Willi syndrome (PWS) is a rare genetic disorder marked by weak muscle tone, an uncontrollable appetite, developmental delays, and behavioral issues. Individuals living with PWS often require different types of therapy and around-the-clock supervision. As with many conditions, families of children with PWS may experience significant financial instability.

In situations like this, the child and their family may be eligible to receive financial assistance in the form of Supplemental Security Income (SSI).   These benefits can help manage the expenses associated with raising a child with special needs.

The following article will provide you with a brief introduction to SSI benefits and will prepare you to begin the application process on behalf of a child with PWS.

Supplemental Security Income

Generally, there are two main types of disability benefits in the United States: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Because SSDI benefits are not suited to help children, we have chosen to focus on the SSI program.

SSI is a program run by the Social Security Administration (SSA) and is intended to provide financial assistance to individuals with disabilities who fall within certain financial restrictions. To qualify, applicants will be evaluated based on their income and financial resources.

In the case of child applicants, the SSA will evaluate a portion of his or her parents’ income to determine eligibility. This is referred to as deeming. Learn more about the deeming process, here: http://www.disability-benefits-help.org/blog/parental-deeming-process.

For more information regarding eligibility for SSI, click here: http://www.socialsecurity.gov/ssi/text-child-ussi.htm.

Medical Requirements

If your child meets the financial requirements for SSI, the SSA will then evaluate his or her medical condition to determine whether or not they have a disability. The SSA will consider your child to have a disability if they meet the following requirements:

  • The child must have a physical or mental impairment that significantly limits his or her activities; and

  • The child’s condition must have lasted, or must be expected to last, at least one year or result in death.

It is important to understand that this definition excludes less advanced or temporary conditions. For this reason, your child will not be approved for disability benefits if he or she does not meet the SSA’s definition of childhood disability.

If your child meets the SSA’s standards of disability, he or she will be evaluated based on requirements specific to his or her symptoms. These requirements can be found in the SSA’s official handbook of disabling conditions—or Blue Book.  The Blue Book is broken up into many different sections, each dedicated to a particular condition or group of conditions. Because the Blue Book does not mention PWS by name, a child with this condition will have to meet a listing associated with his or her symptoms.

Related listings may include:

Be sure to consult the Blue Book to review each of these listings. If you do not understand the terminology or if you are unsure which listing matches your child’s condition, you may want to schedule an appointment with his or her doctor. A doctor can walk you through the criteria and can help you identify the listings that your child falls under.

If your child does not match any Blue Book listings, he or she may still qualify for SSI if you can prove, using medical evidence, that PWS seriously interferes with his or her day-to-day functioning.

Application Preparation

To begin the SSI application process on behalf of your child, you must schedule an interview to be held at your local Social Security field office.

In preparation for your child’s interview, it is important that you collect all medical records relating to your child’s condition.  These should include a record of his or her diagnosis, lab reports, findings of physical and mental examinations, a history of treatments, and written statements from any medical professionals that interact with your child regularly.  Medical records such as these will substantiate your child’s claim—without them the application could be delayed or even denied.

You will also need to collect statements from other adults who know your child and understand his or her limitations. This may include people like teachers, coaches, or therapists. Additionally, you should be prepared to submit records pertaining to your finances.

For a complete list of SSI application requirements, visit the Childhood Disability Checklist.

Application Submission

The actual SSI application is made up of several different forms. Although a portion of these forms can be completed online, many parents prefer to complete all forms at the disability interview—with the help of an SSA representative.  When you are filling out the application, be sure to provide accurate and detailed answers. Any inconsistencies or missing information could potentially impact your child’s claim negatively.

Once you have submitted your child’s SSI application, it may be many months before you receive the SSA’s decision. If your son or daughter is approved, you will receive a letter from the SSA detailing your child’s benefits. If your child is denied, you will receive a letter from the SSA containing the reason for denial as well as instructions to appeal the denial.

Unfortunately, more than half of all applications for disability benefits are denied. That being said—a denial is not the end of the road. Be sure to file an appeal within 60 days of receiving the denial notice and use the appeals process to strengthen your child’s claim and correct any mistakes that were made. Fortunately, many more applicants are approved during appeals proceedings than during the initial application.

For more information about applying for disability benefits, visit the Social Security Disability Help blog or contact Molly Clarke at mac@ssd-help.org.

Understanding Supplemental Security Income (SSI)

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