Can I Receive Long Term Disability Benefits for Amyotrophic Lateral Sclerosis (ALS)?

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Amyotrophic Lateral Sclerosis, commonly referred to as “ALS” or “Lou Gehrig’s disease,” is a rare and devastating neurodegenerative disorder that attacks nerve cells in the spinal cord and lower brain. Those with ALS experience a progressive inability to move their muscles, speak, eat, and breathe. The condition also causes an array of cognitive and emotional difficulties. 

Is Amyotrophic Lateral Sclerosis (ALS) A Disability?

ALS is a disabling condition.  However, although ALS is a progressive and fatal disease, getting approved for long term disability  is not always a simple or straightforward process. To receive long term disability insurance benefits, your claim must still be supported by sufficient medical evidence and proof of appropriate treatment.

If you’ve been diagnosed with ALS, there is a strong likelihood you will consider filing for long term disability.  Below we’ll discuss tips for filing your ALS long term disability claim.

Amyotrophic Lateral Sclerosis (ALS) and Long Term Disability

Despite the seriousness of ALS, it is still important to adequately document your disability claim with your insurance company. Learning how to best substantiate your long term disability insurance claim (e.g., through medical evidence, proof of treatment, etc.) will help increase your chances of approval.

als disability

Disabling Signs and Symptoms for ALS

A significant aspect of your ALS disability claim is outlining your symptoms. A simple letter from your doctor stating your ALS diagnosis won't cut it with your insurance company - they will want to know the state of your condition and how your symptoms impair your ability to work.

There are different types of symptoms you can experience due to ALS: physical, cognitive, and secondary emotional symptoms. All of these are important to document with your disability claim for your insurance company.

Disabling Physical Symptoms of ALS

The initial physical symptoms of ALS and the progression of the disease can vary from person to person.  Symptoms often begin in one of the extremities and spread to other parts of your body.  ALS symptoms may start with something seemingly benign, like muscle twitching or mild weakness in a limb.  However, as the disease progresses, more and more muscles and activities become affected. 

Common early symptoms of ALS include: 

      • Difficulty carrying out daily activities, including walking
      • Increased clumsiness
      • Weakness іn your feet, hands, legs, and ankles
      • Difficulty holding items in your hands
      • Muscle cramping, twitching, and stiffness in your arms, shoulders, or tongue
      • Difficulty maintaining good posture and holding your head up
      • Slurring of speech and difficulty with voice projection
      • Pain
      • Abnormal limb fatigue  
      • General fatigue
      • Difficulty chewing or swallowing

These symptoms have varying effects on your body and functional abilities.  For example, if the initial symptoms affect the hands or arms, you may have difficulty buttoning a shirt, writing, typing on a computer, or turning a key in a lock.  Alternatively, if the initial symptoms affect the legs, you may experience awkwardness while walking, tripping, or stumbling.  

Common advanced symptoms of ALS include:

      • More severe muscle weakness
      • Less muscle mass
      • More serious chewing and swallowing problems
      • Difficulty speaking
      • Trouble breathing

As ALS progresses, it begins to affect almost all of the muscles you control.  For example, ALS results in severe weakness in your legs, leaving you wheelchair bound.  ALS can paralyze the muscles you use to breathe forcing you to use a CPAP-like machine to help you breathe at night.  ALS also can result in problems speaking and eating, leading to the use of communication technologies and a feeding tube, respectively.

Disabling Cognitive Symptoms of ALS

Along with the motor dysfunction ALS causes, cognitive and executive dysfunction commonly occurs as well.

Cognitive and executive dysfunction symptoms of ALS may include:

      • Uncontrolled outbursts of laughing or crying, known as emotional lability
      • Difficulty with focus, attention span, and concentration
      • Inflexible thinking
      • Problems with decision making and planning
      • Inability to regulate emotions
      • Dementia

These symptoms should be documented along with your physical ALS symptoms when filing for long term disability. Just as with any motor dysfunction, these cognitive symptoms may interfere with your ability to work, and therefore are important to represent to your insurance company.

als depressionSecondary Emotional Symptoms of ALS

Coping with the diagnosis and progression of ALS can cause profound emotional difficulties. It is not uncommon for those with ALS to experience clinical depression as a result of their condition.

It is important to communicate your mental health issues to your treating doctor(s), and to document the onset of your symptoms for your long term disability claim. However, be careful when filing your disability claim. Your insurance company may be quick to label your disability as a mental illness rather than a physical disability. This is because most long term disability insurance policies limit how long benefits can be paid for mental illnesses.

To prevent your insurance company from characterizing your disability as a mental illness, your treating doctor(s) should make it clear in their records that your emotional symptoms (i.e. depression, anxiety) are secondary to and directly resulting from your ALS.


Inability to Work Due to ALS

Every disability insurance claim hinges on proving you are unable to work due to your condition. While it may seem obvious why cannot work as a result of ALS, never assume your insurance company will understand without a clear explanation. This is especially true as your symptoms first begin to emerge.

For example, the weakness and muscle cramping in your hands may cause issues with your fine manipulation and dexterity, interfering with your ability to type on a computer or take notes at a meeting. The weakness in your legs and feet may cause difficulty walking, stumbling, and increased clumsiness – thus making it difficult or impossible to travel to an important business meeting or arrive on time.  Alternatively, your pain and fatigue may result in problems with attention, concentration, and focus that prevent you from following along during a presentation. Your pain and fatigue may also prevent you from physically completing a full workday.

The slurring of your speech and difficulty projecting your voice can make it difficult for you to give an important lecture, or debate a topic with a colleague. Worse yet, your uncontrollable outbursts of either laughing or crying can disrupt a business meeting or seminar.  Also, your difficulty eating and drinking may prevent you from entertaining clients and attending luncheons.

Remember that disability benefits are only approved when your insurance company believes you can no longer perform your job duties. Having an understanding of the specific ways your ALS symptoms prevent you from working will increase your chances of disability claim approval.

Writing A Personal Narrative

While objective medical evidence and your doctor’s opinion will be the most influential evidence with your insurance company, it is often beneficial to explain exactly how your individual symptoms prevent you from performing your job duties.

This can be done by preparing a detailed, written narrative for the insurance company. Make sure your narrative addresses each of your symptoms by listing them separately. Explain your individual symptoms and how they impact your ability to perform specific job duties. The more detailed you are, the more convincing your narrative will be with your insurance company.

Getting Approved For Long Term Disability Due to ALS

When filing a long term disability claim for ALS, your insurance company will be looking for objective medical evidence to support your diagnosis, disabling symptoms, and appropriate treatment.

als diagnosisYour ALS Diagnosis is Key

Your long term disability insurance company will require proof of your ALS diagnosis for your long term disability claim. Unfortunately, ALS is difficult to diagnose early because it may appear similar to other more common neurological diseases. It is also difficult to diagnose because no one test can provide a definitive diagnosis.

The first step in obtaining an ALS diagnosis is to visit your doctor.  An ALS diagnosis can be based primarily on the signs and symptoms observed by your doctor.  If ALS is suspected, your physician will conduct a thorough evaluation. Your physician will obtain your full medical history and conduct detailed neurological examinations over time to determine if your symptoms of muscle weakness, atrophy, and hyperreflexia (and other symptoms) are getting progressively worse. 

Diagnostic Testing for ALS

In addition to the physical examinations and the symptoms observed by your physician, the following diagnostic tests may be performed to help rule out other causes of your complaints:

  • Electromyography (EMG). Electromyography measures the tiny electrical discharges produced іn muscles. A thin-needle electrode is inserted into the muscles your doctor wants to study. An instrument records the electrical activity in the muscle as it rests and contracts.  Abnormalities in your muscles can help your doctor diagnose ALS and/or rule out other disorders.
  • Never conduction study. As part of an electromyography study, two electrodes are taped to the skin above a nerve or muscle to be studied. A small shock is passed through the nerve to measure the size and speed of nerve signals. This test can determine if you suffer from nerve damage associated with ALS.
  • Imaging studies. Your doctor may suggest magnetic resonance imaging (MRI) or a computerized tomography (CT) scan of the brain and/or spinal cord. These tests can help your doctor determine if something other than ALS may be causing the signs and symptoms.
  • Spinal tap (lumbar puncture). This test analyzes the cerebrospinal fluid surrounding the brain and spinal cord. A needle is inserted into the spinal canal to collect fluid. Tests of this fluid indicate the number and type of white blood cells, the level of sugar, and the levels and type of proteins. Additional tests on this fluid can indicate evidence of bleeding, infection, and abnormal cells.
  • Blood and urine tests. Analyzing samples of blood and urine in the laboratory may help your doctor eliminate other possible causes of your signs and symptoms. 
  • Muscle biopsy. If your doctor detects muscle disease rather than ALS, your doctor might recommend a muscle biopsy. In this procedure, a small portion of tissue is removed and sent to a lab for analysis to rule our other neuromuscular diseases.

Appropriate Treatment for Amyotrophic Lateral Sclerosis

When evaluating an ALS long term disability claim, the insurance company will want to confirm you’re receiving appropriate treatment. Noncompliance and lack of appropriate care can easily be used as a reason to deny your ALS long term disability claim.

Because there is no cure for ALS, treatment aims to alleviate symptoms, prevent unnecessary complications, and slow the rate of progression of the disease. ALS can cause a range of physical, cognitive, and emotional changes. Therefore, you will likely need a team of specialists to help manage your symptoms and care, improve your quality of life, and prolong your survival.

Your insurance company will look to see that you are pursuing all avenues of treatment as recommended by your treating doctor(s).



Medications such as Riluzole (Rilutek) and Edaravone (Radicava) are known to slow the progression of ALS.  Your doctor may also prescribe medication to help you deal with your symptoms of muscle cramps/spasms, constipation, fatigue, excessive salivation and phlegm, pain, depression, sleep problems, and uncontrollable outbursts of laughing or crying.


Breathing Care/Therapy

This typically consists of mechanical ventilation devices to help you breathe at night.  If your breathing problems are severe, your doctor may suggest a tube be inserted into your windpipe and connected to a respirator.


Physical Therapy

Physical therapy may help you manage pain and address mobility issues. A physical therapist may help you with low-impact exercises to enhance cardiovascular fitness and overall well-being. They can also help you adjust to mobility aids such as walkers and wheelchairs, and they may suggest devices to make life easier, such as a ramp for your house.


Occupational Therapy

This treatment is aimed at helping you maintain independence.  For example, occupational therapy can assist in choosing adaptive equipment and assistive technologies to help keep up your daily routines (e.g., with grooming, bathing, eating, dressing, etc.).  An occupational therapist can also help you compensate for hand and arm weakness, for example.


Speech Therapy

Speech therapy іѕ useful when ALS begins to make it harder to talk. Speech therapists can help by teaching adaptive techniques. They can also teach you other methods оf communication, such as writing and the use of computer-based communications equipment.


Nutritional Support

As ALS progresses, you may have difficulty swallowing food and drinks.  This can make it difficult to get the proper amount of nutrients.  Nutritionists can advise on preparing nutritious meals that are easier to swallow. Unfortunately, suction devices and feeding tubes may be required as your symptoms progress to the later stages of ALS.


Psychological Support

ALS can also take a toll on you mentally and emotionally.  Therefore, it is often helpful to seek psychological treatment for emotional support and to help you adjust. Your mental health treatment records should reflect that your emotional symptoms (i.e. depression, anxiety) are secondary to and resulting from your ALS diagnosis.

A Disability Insurance Attorney Can Help

Despite how serious an ALS diagnosis is, your insurance company will require objective evidence before approving disability benefits. A long term disability insurance attorney will know how to substantiate your ALS claim and significantly increase your chances of approval.

If you’ve been diagnosed with ALS and are planning to file for long term disability, or if you’ve recently had your ALS long term disability insurance claim denied, the New York disability attorneys at Riemer Hess can help. Call Riemer Hess LLC at (212) 297-0700 for a consultation on your disability case.

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