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Are Americans with Rare Diseases Eligible for Social Security Disability Benefits?

Social Security Disability BenefitsReviewing medical records for disability claims related to rare diseases can be very challenging with a time-intensive medical record retrieval process from multiple providers across multiple specialties. Many people are concerned whether rare diseases qualify for disability benefits. These may be very serious and prevent the afflicted person from working. The Social Security Administration grants disability benefits for rare diseases, and to qualify for the same the applicant must meet both medical and non-medical requirements, namely:

  • Have the required number of work credits to be insured for SSDI
  • Have a severe condition that will last at least 12 continuous months and will not allow the person to perform any type of substantial gainful activity.

Rare Diseases, Medical Vocational Allowance and Compassionate Allowance

SSA’s Listing of Impairments lists the most common conditions and their typical symptoms the SSA recognizes as disabling. However, the NORD (National Organization for Rare Disorders) recognizes around 7,000 rare diseases and conditions, and so there may be many less common conditions that are not included in the listing. For example, consider Cushing’s syndrome that challenges the human body in different ways and makes even routine activities difficult to complete. This condition is not specifically listed in the SSA’s Blue Book, but applicants with this medical condition may qualify for disability benefits under a separate listing that is related to their particular impairment and limitations. These listings include:

  • Cardiovascular disorders
  • Disorders of the spine
  • Endocrine disorders
  • Mental disorders

Cushing’s syndrome displays a number of different symptoms and often affected people may not fit under one specific listing. Such candidates may qualify for a medical vocational allowance. For this, the SSA would evaluate the disability claim to determine whether the person is in fact disabled by his/her condition even though their specific condition is not listed in the Blue Book. This evaluation involves an extensive medical records review to help establish the degree of impairment. The medical records should include documentation of the diagnosis, findings of physical and mental exams, history of treatments provided and the applicant’s response to them, and written statements from the treating doctors. While evaluating the claim, the SSA would look at aspects such as physical and mental ability of the applicant, age and job training.

The SSA also has a listing called the Compassionate Allowance list that allows applicants with certain rare conditions to speed up their application. This program helps avoid lengthy delays and other obstacles for applicants with rare diseases that may be difficult to evaluate within the regular disability process.

Many Applications Denied Initially Are Successful during the Disability Hearing

Many applications, more than half, are initially denied mainly due to them being incomplete or because they don’t include enough information. However, there are other instances when even people with rare diseases that are listed in the Blue Book are denied disability allowance. Take the case of Allison Kowaleski, a California woman who was denied SS benefits for her disabling condition. She was diagnosed with Addison’s disease in 2013, a rare condition that occurs when the adrenal glands don’t produce enough hormones, including cortisol. This condition when serious, could lead to coma or death. She was further diagnosed with many other rare diseases, all working against each other. She cannot engage in any kind of work and is constantly fatigued. Even so, she was denied social security disability benefits, though the reason for the denial is not mentioned in the villagelife.com article that tells her story.

In cases such as the above, applicants can appeal the decision within 60 days of receiving the notice of denial. This will help the applicant provide updated information to the SSA and make a stronger case for himself/herself. Most applicants retain the services of a social security disability attorney to handle the appeal stage because there is a better chance of winning the case with efficient representation. Many applicants win at the appeal level than during the initial application.

Applicants without strong legal counsel may lose their case at the disability application and reconsideration appeal levels but win during the disability hearing due to many reasons such as:

  • The SSA does not attempt to obtain a statement from an applicant’s treating physician. At the hearing level, the disability attorney or representative will ensure that such statements are obtained and presented to a judge. The statement will list the ways in which and the extent to which the applicant is functionally limited. Strong supporting statements from treating physicians help applicants win their case at the disability hearing level.
  • Before the hearing level, the claimant does not get the opportunity to explain how their disability limits them. Their attorney or representative also does not have the opportunity to make a presentation on the basis of the medical evidence available. During the initial levels of the claims processing, the disability examiner decides the case without meeting the claimant. However, an argument can be presented for approval on the basis of the medical evidence that has been obtained and submitted at the hearing stage.

Applicants with rare diseases may be eligible for disability benefits. Medical records constitute the most important evidence when evaluating the application. There is no doubt that applicants represented by attorneys stand a better chance of winning their claim, and for the legal professionals themselves, medical record review for attorneys becomes a very useful service to determine the merit of a case.

About Julie Clements

Julie Clements

With some background in the healthcare staffing arena; as well as 6 years as Director of Sales and Marketing at a 4 star resort; Julie joined MOS in March of 2008. Hired for sales and support, Julie has proven capable across multiple product lines and in early 2011 was promoted to supervise all solutions managers.