FRIEDREICH’S ATAXIA & SSD BENEFITS

WHAT IS FRIEDREICH’S ATAXIA?

Friedreich’s ataxia (FA) is a rare genetic disorder that mainly affects the nervous system and muscles.  Friedreich’s ataxia causes progressive damage to the nervous system. It leads to symptoms such as problems with balance, muscle weakness, and sensation loss in the legs and arms. FA is named after the German doctor Nikolaus Friedreich, who first described the disease in the 19th century.

The condition is caused by a mutation in the FXN gene, which provides instructions for making a protein called frataxin. Frataxin plays an important role in cell function. Especially in the regulation of iron levels within cells. The reduced levels of frataxin leads to damage in nerve and muscle cells.

Unfortunately, the gene mutation for FA is present at birth. Therefore, within 15 to 20 years after the appearance of the first symptoms, the person can no longer walk and needs to use a wheelchair. In later stages of the disease, people become completely incapacitated. Most people with Friedreich’s ataxia die in early adulthood. Some people with less severe symptoms live much longer.

In the US, Friedreich’s ataxia affects almost 1 in every 50,000 people. Currently, there is no cure for the disease. Physical therapy and other treatments can help maintain mobility for as long as possible. Nevertheless, FA is a serious disease and it qualifies for SSD benefits. All you need to do is file an application on the SSA’s website.

THE SYMPTOMS OF FRIEDREICH’S ATAXIA

Friedreich’s ataxia can present with a range of symptoms. Common symptoms include:

1. Ataxia: Difficulty walking and trouble with fine motor skills such as writing or typing.
2. Muscle Weakness: Weakness in the muscles, especially in the legs and arms, is common in individuals with the disease. Muscle weakness causes problems with  walking, lifting objects, and performing everyday tasks.
3. Loss of Sensation: Many individuals with FA experience a loss of sensation in the hands and feet.
4. Speech Problems: Speech problems are common in FA. This can include slurred speech, changes in voice pitch or tone, and problems stating words clearly.
5. Vision Impairment: Vision problems, such as optic nerve atrophy and changes in eye movement control, can also occur. This can lead to problems with focus and depth perception.
6. Hearing Loss: Some individuals may experience hearing loss. This can range from mild to severe and may require the use of hearing aids.
7. Scoliosis: Scoliosis is a common symptom of FA. This can lead to back pain and changes in posture.
8. Heart Conditions: Cardiac conditions are common with FA.
9. Diabetes Mellitus: About 10-20% of people with Friedreich’s ataxia develop Diabetes Mellitus.

TREATMENT FOR FRIEDREICH’S ATAXIA

Currently, there is no cure for Friedreich’s ataxia, but treatment focuses on managing symptoms of the disease. Here are some common approaches to treatment:

1. Physical Therapy: Physical therapy helps manage the symptoms of FA by focusing on strength, flexibility, and balance. An exercise program can help you maintain mobility and independence for as long as possible.
2. Occupational Therapy: Occupational therapy focuses on teaching you how to perform daily activities. This may include using assistive devices such as a cane or walker. You can also use other tools to help you with tasks like dressing, eating, and writing. Make sure to tell the SSA about this type of treatment.
3. Speech Therapy: Speech therapy can help improve speech clarity and communication skills.
4. Medications: While there are no specific medications to treat FA, certain drugs may manage symptoms. For example, medications may prevent muscle spasms, treat heart conditions, or manage diabetes.
5. Surgery: In cases of severe scoliosis or cardiac issues, surgery can help.
6. Supportive Care: Providing support and assistance with activities of daily living is essential if you have FA. This may include changes to your home, like putting in a ramp instead of stairs. It also includes mental health support to cope with the challenges of the condition.
7. Clinical Trials and Research Studies: You can participate in clinical trials and research studies. These provide access to experimental treatments and contribute to a better understanding Friedreich’s ataxia.

FRIEDREICH’S ATAXIA QUALIFES FOR SSD BENEFITS

Friedreich’s ataxia qualifies for SSD benefits if your condition meets the criteria from the Social Security Administration (SSA). To qualify for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) benefits due to FA, you must prove that your condition keeps you from performing substantial gainful activity (SGA).

The SSA evaluates your claim for benefits based on how your medical condition impacts your ability to work. It is your burden to provide medical evidence from your doctor and other medical providers. Also, you must submit test results and treatment records to support your claim for SSDI benefits. This evidence should contain the following:

1. Medical Documentation: Detailed medical records that contain the diagnosis of Friedreich’s ataxia. Make sure what you submit to the SSA includes clinical findings, medical test results, and treatment history.
2. Functional Limitations: You must submit evidence that shows the functional limitations caused by FA. For example, you need to submit evidence that proves you have problems with walking and balance. Also, submit evidence that shows problems with fine motor skills, speech, vision, and hearing.
3. Inability to Work: Records that prove your disease prevents you from working a 40 hour work week. This may include evidence of your work history and vocational testing. It can also include statements from your doctor about your physical and mental limitations.
4. Duration: To win benefits you must meet the duration requirement for benefits. This means that your medical condition is expected to last for at least 12 months or result in death.

YOU CAN APPLY FOR TWO TYPES OF SSD BENEFITS 

Qualifying for SSD benefits means you have a severe medical condition, like FA, that prevents you from working at all jobs. Below, you can find an explanation as to each type of benefit for which you can apply:

Social Security Disability Insurance (SSDI):  

SSDI benefits are for those who can no longer work due to a severe medical condition. The amount of money you receive from SSDI benefits is based on the taxes you paid during your working years. To qualify for SSDI, you must have earned enough “work credits” to qualify.

A work credit is an amount of taxable income. You can earn up to 4 work credits per year. The amount of work credits you will need depends on how old you are when you apply. If you haven’t earned enough work credits at the time you apply, then you will only be able to file for SSI benefits.

Supplemental Security Income (SSI):  

SSI is a needs based benefit. It is for only those people with little to no income, such as children and the elderly. Anyone who makes more than a certain amount of money per month cannot receive SSI benefits. The SSA counts the income and assets of those who live with you, such as a spouse.

If you have a spouse who earns more than $4000 a month, then that income prevents you from being paid SSI benefits. The same rule applies if you are living with a boyfriend and he is paying your bills. Also, the same rule applies if you are living with your common law wife and she is paying your bills. You cannot get SSI benefits, no matter how severe your medical condition, if you do not meet the income and asset rules for SSI.

MEETING SSA LISTING 11.17 FOR FRIEDREICH’S ATAXIA

The SSA uses a five step review process to see if you qualify for SSD benefits. The five step process takes into account your medical condition, age, education, work experience, and physical and mental limits. Individuals with FA who meet SSA’s listing 11.17 will be paid SSDI or SSI benefits.

To meet listing 11.17, you must first have an official diagnosis made by a doctor. Next, it must result in the following limitations under either A or B:

A. Disorganization of motor function in two extremities, resulting in an extreme limitation in the ability to stand up from a seated position, balance while standing or walking, or use the upper extremities.

OR

B. Marked limitation in physical function and in one of the following:

1. Understanding, remembering, or applying information; or
2. Interacting with others; or
3. Concentrating, persisting, or maintaining pace; or
4. Adapting or managing oneself.

THE PART B CRITERIA UNDER LISTING 11.17 FRIEDREICH’S ATAXIA

Under listing 11.17, the SSA lists Part A criteria and Part B criteria. You can meet the listing by proving either Part A or Part B. You do not need to prove both.

Under the Part A criteria, the SSA only focuses on how your disease impacts your physical activity. If you have disorganization of motor function in both your hands or both feet, then you might meet the listing.

However, you will only meet the listing if you cannot stand up from a seated position. Or, from being able to balance while you stand or walk. To meet the listing you must not be able to use your hands for fine or gross activities. The following sections discuss the Part B rules in detail. You can also learn how the Part B criteria applies in mental cases.

WHAT IS AN IMPAIRMENT IN UNDERSTANDING, REMEMBERING OR APPLYING INFORMATION?

Understand, remember, or apply information. This area of mental function refers to the ability to learn, recall, and use information to perform work activities. Examples include understanding and learning terms, instructions, and work procedures. You must be able to follow one or two step oral instructions to carry out a task.

Additionally, you should be able to  describe work activity to someone else, ask and answering questions, and giving explanations. Likewise, you should be able to recognize a mistake and correct it. You should also be able to identify and solve problems.

Furthermore, you should be able to use reason and judgment to make work decisions. These examples show the nature of this area of mental function. The SSA does not require records of all of the above examples in order to meet listing 11.17.

WHAT IS AN IMPAIRMENT IN INTERACTING WITH OTHERS?

Interacting with others. This mental area refers to your ability to relate to and work with supervisors, other workers, and the public. Examples include: how you cooperate, ask for help, handle conflicts, and state your own point of view.

Other examples include the ability to sustain conversation and understand and responding to social cues. Also, you need to be able to respond to requests, suggestions, criticism, correction, and challenges.

Likewise, it refers to keeping social interactions free of anger, sensitivity, and being suspicious. These examples show the nature of this area of mental function. The SSA does not require medical records of all of the above examples.

WHAT IS AN IMPAIRMENT IN YOUR ABILITY TO CONCENTRATE, PERSIST OR PACE?

Concentrate, persist, or maintain pace. This mental area refers to your ability to focus on work activities and stay on task. Examples include starting and doing tasks that you understand and know how to do. Also, you should be able to work at a decent pace and complete tasks in a timely manner.

Additionally, you must be able to change activities or work spaces without bothering other workers. Sustaining an ordinary routine and regular attendance at work also shows the ability to persist at work.

Finally, you must be able to work a full day without needing more than average rest periods during the day. These examples show the nature of this area of mental function. The SSA does not require medical records for all of the above examples.

WHAT DOES ADAPTING OR MANAGING ONESELF MEAN?

Adapt or manage oneself. This mental area refers to the ability to regulate emotions, control behavior, and maintain your calm in a work setting. Examples include responding to demands and dealing with changes. You should be able to manage your mental symptoms.

Also, you should be able to understand the difference between acceptable and unacceptable work performance. Likewise, you need to be able to set goals and make plans for yourself without the help of others. Also, you must be able to maintain your personal hygiene and dress in work attire.

You should also be aware of normal hazards and being safe. These examples illustrate the nature of this area of mental function. The SSA does not require records of all of the examples in order to meet the listing.

FRIEDREICH’S ATAXIA IS A COMPASSIONATE ALLOWANCE

The SSA has a list of compassionate allowances which allows the SSA to grant severe medical conditions more quickly. These medical conditions are so severe that the SSA believes you should automatically qualify for SSD benefits. If you have one of the conditions on the list, then you can apply online for benefits on Social Security’s website.

When you file an application, you will need to submit information proving your medical condition. According to the SSA, they will accept a number of tests to confirm your diagnosis of Friedreich’s ataxia: