The Social Security Administration (SSA) maintains a list of conditions that qualify for its Social Security Disability Insurance (SSDI) program. However, many conditions, including some rare ones, exist outside of that list.
Navigating the SSDI process for these rare diseases can be challenging, but there are specific considerations and programs in place to assist individuals with these conditions.
If you’re navigating the SSDI process for rare diseases, the SSA has two initiatives in place that can facilitate SSDI benefits even if the applicant’s condition is not listed in its Listing of Impairments. These two initiatives are the medical-vocational allowance and the compassionate allowance program.
These programs are designed to provide support and resources to individuals with rare diseases, ensuring they receive the assistance they need. Remember, these processes do not define an individual’s capabilities or potential. With the right support, individuals with rare diseases can lead fulfilling and meaningful lives.
Continue reading below for more information on these programs and how you can qualify for SSDI benefits with a rare disease.
What Are Rare Diseases?
A disease is considered “rare” in the United States if it affects fewer than 1 in 200,000 people annually. Despite this, millions of Americans experience over 7,000 different rare diseases each year.
Genetic Component
More than 80% of rare diseases in the United States have a genetic component. This is one reason why half of all rare diseases are identified in children below the age of 12, as genetic disorders typically cause symptoms either shortly after birth or during childhood.
Examples of Rare Genetic Disorders
One example of a rare genetic disorder is Tay-Sachs syndrome, an inherited condition characterized by a buildup of fatty deposits in the brain and spinal cord, usually resulting in the patient’s death before the age of four.
Another condition, Turner syndrome, commonly affects females born with only one copy of the X chromosome. Symptoms include short stature, a heightened risk of heart defects, a delay in the onset of puberty, infertility, and an increased risk for learning disabilities.
Other Rare Diseases
Infections, allergies, environmental factors, and degenerative diseases account for the remaining 20% of rare diseases. These conditions can affect individuals of any demographic.
For example, bacterial meningitis is a serious infection that can cause a stiff neck, headache, and fever. In rare instances, it can be fatal, highlighting the importance of awareness of this condition.
Can I Get SSDI for a Rare Disease?
The SSA maintains a Listing of Impairments that outlines the conditions and symptoms for which it grants disability benefits. However, the National Organization for Rare Disorders (NORD) recognizes approximately 7,000 rare diseases and conditions, many of which are not included in the SSA’s list.
Take Cushing’s syndrome as an example. This condition presents unique challenges for the human body, making everyday tasks difficult. Although this medical condition is not included in the SSA’s Blue Book, applicants may still be eligible for disability benefits under a different listing that better describes their specific impairments and restrictions.
These listings include:
- Cardiovascular disorders
- Spinal disorders
- Endocrine disorders
- Mental disorders
Individuals with Cushing’s syndrome may experience a wide variety of symptoms, and their condition may not neatly fall into any one category. In such cases, medical-vocational allowances may be available.
The SSA evaluates each disability claim to determine whether the claimant is disabled due to their condition, regardless of whether the condition is included in the Blue Book. This assessment involves a thorough review of relevant medical records, including the applicant’s diagnosis, the results of any physical or mental examinations, a summary of any treatments they’ve received and how they’ve affected their condition, and any statements made by their doctors.
The SSA also considers factors such as the age of the applicant, their level of job training, and their physical and mental capacity when determining whether a claim should be approved.
Understanding the Challenges in Meeting SSDI Requirements for Rare Diseases
Obtaining a diagnosis is often the first hurdle faced by individuals with a rare disease. These diseases often go undetected, leaving individuals in discomfort for years before a diagnosis is finally made. This can also lead to incorrect diagnoses, resulting in inadequate treatment and causing further distress.
It can be challenging for applicants to prove that they have a legitimate disease rather than a collection of unexplained symptoms. The SSA requires medical evidence, such as results from physical examinations, laboratory tests, and imaging, to confirm the existence of a diagnosis or disability.
An individual’s daily symptoms and impairments serve as evidence for determining the nature and extent of the work they can perform, but only if they are attributable to a medically determinable impairment.
It’s also common for individuals with a rare disease to consult multiple doctors before receiving an accurate diagnosis. The SSA may interpret this as a sign that the individual is exaggerating or fabricating symptoms to receive benefits. Even with a correct diagnosis, your physician may not be confident in the best treatment option due to a lack of data on your specific illness.
Once you start examining the specifics of the Blue Book’s listings, it can be challenging to determine whether you fall under those categories. It’s usually very challenging to “meet” one of the listings, and it’s even more challenging to “equal” a listing. These are specialized terms used only in Social Security disability law.
You may be eligible for disability benefits if you have a mental or physical impairment that prevents you from working, even if your condition is not specifically listed. This is also tricky, so each case is examined carefully in light of the following considerations:
- Age
- Education
- Work history
- Medical issues
- Transferable skills
A qualified disability insurance lawyer will know how to counteract these considerations and present evidence in support of their client’s disability that will help persuade the SSA to award benefits.
Compassionate Allowance for Rare Disease
When applying for SSDI benefits, individuals with conditions covered under the “Compassionate Allowance” initiative can navigate the system much more quickly than usual. This increases their chances of receiving aid when they need it the most.
The majority of the conditions listed for Compassionate Allowance are rare, including several types of cancer and neurodegenerative disorders. The list is updated periodically to reflect the consensus of the medical and scientific communities. Members of the public are also welcome to submit their own suggestions for new conditions to be included.
Many of the conditions on the list are considered terminal, and all of them are extremely serious and challenging to live with. To qualify for a Compassionate Allowance, you must provide evidence, including a diagnosis of one of the qualifying conditions.
For instance, in the case of cancer, the SSA needs to know the precise type of cancer to decide whether to grant a Compassionate Allowance. Certain kinds of cancer may also be evaluated according to whether or not it has spread, as well as how far it has spread.
The SSA typically identifies Compassionate Allowance cases at the time of your initial application. However, you may choose to consult with a Social Security Disability attorney to help gather the evidence, fill out the necessary paperwork, and ensure your application is reviewed fairly.
Recent Changes to the Compassionate Allowance Program
The SSA has recently expanded the Compassionate Allowances Program to include 12 additional qualifying conditions. This program was designed to expedite the claims review process for SSDI benefits by compiling a list of specific conditions that inherently meet the SSA’s criteria for disability benefits.
The list, which initially included over 260 conditions, has grown over the years and now includes the following 12 conditions added in 2023:
- Angioimmunoblastic T-cell Lymphoma
- Blastic Plasmacytoid Dendritic Cell Neoplasm
- Gerstmann-Straussler-Scheinker Disease
- Microvillus Inclusion Disease – Child Mowat-Wilson Syndrome
- Myelodysplastic Syndrome with Excess Blasts
- NUT Carcinoma
- Pfeiffer Syndrome – Types II and III
- Pontocerebellar Hypoplasia
- Posterior Cortical Atrophy
- Renal Amyloidosis – AL Type Sarcomatoid Mesothelioma
These additions highlight the SSA’s commitment to recognizing and accommodating the diverse range of conditions that can impact an individual’s ability to work, thereby ensuring that individuals with these conditions receive the support they need.
Previously listed diseases and conditions include acute leukemia, brain disorders, late-stage cancers, and early-onset Alzheimer’s disease. Currently, there are more than 500 types of cancer that are considered rare. It is critical to submit an SSDI application without unnecessary delay if you meet the requirements.
It can be devastating to find out that you or someone close to you has a serious rare condition. A Social Security disability attorney can guide you through the maze of paperwork required to apply for SSDI and identify severe medical conditions that qualify for expedited approval under the Compassionate Allowances Program.
Since the inception of the Compassionate Allowances Program, the SSA has been able to approve benefits for over 800,000 people with severe disabilities in a matter of weeks rather than months or years.
How Long Does It Take to Get Compassionate Allowance Approval?
When you apply for disability benefits, you don’t need to do anything special to be considered for a Compassionate Allowance. The SSA uses a system that scans regular online applications for specific keywords and conditions, potentially identifying any Compassionate Allowance requirements at this stage.
Approval of your SSDI application can take anywhere from a week to a few months after the SSA review process identifies your claim as a Compassionate Allowance case. To mark your application as such, you need to mention a qualifying condition on your application or inform the SSA of your diagnosis.
Additionally, you and your doctor will need to provide extensive medical documentation to prove your medical condition. If you have a qualifying condition but have not yet received approval for Compassionate Allowance, it’s advisable to contact the SSA as soon as possible.
Approval for Social Security Disability benefits may take several years unless you qualify for a Compassionate Allowance or can demonstrate “dire need” to have your case fast-tracked. There are factors that could delay your Compassionate Allowance processing, such as insufficient medical documentation or the need for follow-up exams. Therefore, providing the SSA with all necessary information and documentation as soon as possible is beneficial.
What Happens if the SSA Denies My Application?
If the SSA denies your application, you have the right to appeal their decision. You will be notified of their decision via mail, and you will have 60 days from the receipt of that letter to file an appeal.
Retain the medical documentation from your initial application and supplement it with new medical evidence. It’s highly recommended to work with a disability attorney to help gather evidence from various sources and build a convincing case.
The SSA appeals process consists of four stages:
- Request for Reconsideration
- Administrative Law Judge (ALJ) Hearing
- Appeals Council Review
- Federal Court Review
While it’s unlikely that your appeal application will be approved in the first, third, and fourth stages, the ALJ hearing is the stage where the majority of appeals claims get approved. This is also the stage where you’re most likely to need legal counsel to represent you in court, help you answer the ALJ’s questions, and prepare you for examination by the Vocational Expert (VE).
Remember, you have 60 days to file an appeal, so it’s important to start as soon as you receive the notification. With the right support and resources, individuals can navigate this process successfully.
Conclusion
Navigating the SSDI process for rare diseases can be challenging due to the unique nature of each condition. The SSA maintains a list of conditions that qualify for SSDI, but many rare diseases aren’t included.
However, through the medical-vocational allowance and the compassionate allowance programs, applicants who qualify can receive SSDI benefits even if their condition is not listed in its Listing of Impairments.
While qualifying for SSDI benefits for a rare disease may be more challenging, it’s not impossible. With the right documentation and the assistance of legal counsel, individuals can navigate this process and maximize their chances of approval.
