USHER SYNDROME & DISABILITY BENEFITS
WHAT IS USHER SYNDROME?
Usher syndrome is a genetic condition that causes hearing loss and progressive vision loss. Some people also develop serious balance problems. The condition occurs because certain genes do not work properly. These genetic changes affect the inner ear and the retina of the eye. The retina contains light sensing cells that allow you to see. These cells send signals to the brain so you can interpret visual information.
In Usher syndrome, the retina slowly degenerates due to a condition called retinitis pigmentosa. This condition causes gradual vision loss over time. You may first notice trouble seeing in low light. As the condition progresses, your peripheral vision becomes limited. Peripheral vision allows you to see objects outside the center of your view. Loss of this vision creates tunnel vision.
Hearing loss also occurs because Usher syndrome affects the cochlea. The cochlea is a structure in the inner ear that processes sound. Damage to this structure limits your ability to detect and interpret sound. Balance problems may also occur because the inner ear helps control your sense of balance. When these structures do not function properly, you may struggle with movement.
The symptoms of Usher syndrome depend on the disease type you have. Some people experience severe hearing loss at birth. Others develop hearing and vision problems later in life. Doctors often diagnose the condition using hearing tests, vision tests, and balance testing. Eye exams may include visual field tests that measure your side vision. Balance testing may include studies that measure eye movement linked to inner ear problems. These evaluations help confirm the presence of Usher syndrome.
HOW MANY PEOPLE HAVE USHER SYNDROME?
Usher syndrome is a rare condition. However, it is the leading cause of combined deafness and blindness worldwide. Researchers estimate that about 400,000 people across the world live with the condition. In the United States, experts estimate that about 25,000 people have Usher syndrome. The condition affects roughly one out of every 6,000 to 25,000 people.
Studies also show that about 4 to 17 people out of every 100,000 have the condition. Usher syndrome plays a significant role in childhood hearing loss. Experts estimate that the condition accounts for about three to six percent of all childhood hearing loss cases. The condition also represents about ten percent of congenital profound hearing loss.
Many people first learn they have Usher syndrome after doctors detect hearing problems early in life. Vision loss may appear years later as the disease develops. Researchers also report that many people with retinitis pigmentosa experience hearing loss. Among people who have both hearing loss and retinitis pigmentosa, about half receive a diagnosis of Usher syndrome.
Because the condition is genetic, it runs in families. Parents may carry the gene without showing symptoms. A child may develop the condition when both parents pass on the affected gene. Although the condition is rare, its impact can be severe. Progressive hearing and vision loss significantly affect your independence and quality of life.
THE THREE TYPES OF USHER SYNDROME
Doctors classify Usher syndrome into three main types. Each type affects hearing, vision, and balance in different ways.
USHER SYNDROME TYPE 1
Usher syndrome type 1 is the most severe form of the condition. Children with this type are usually born with profound hearing loss. Many also experience significant balance problems early in life. Vision problems usually begin during childhood or the early teenage years. The first symptom often involves difficulty seeing at night. As the disease progresses, the field of vision continues to shrink.
USHER SYNDROME TYPE 2
Usher syndrome type 2 involves moderate to severe hearing loss at birth. Children with this type often use hearing aids or other communication tools. Balance problems usually do not occur with this type. Vision loss from retinitis pigmentosa often begins during the teenage years. Vision loss usually occurs more slowly than in type 1.
USHER SYNDROME TYPE 3
Usher syndrome type 3 is the rarest form. Children with this type often have normal hearing at birth. Hearing loss develops later and gradually worsens over time. Vision loss also develops later in life with type 3. Symptoms often appear around the time of puberty. Balance problems may develop as the condition progresses.
Scientists have identified several genes linked to the three different types of Usher syndrome. These genetic differences help doctors identify the specific form of your disease. Understanding the type of Usher syndrome you have helps doctors predict how your symptoms may progress.
USHER SYNDROME TYPE 1 IS A DISABILITY FOR THE SSA
Usher syndrome type 1 qualifies as a disability under the SSA rules. This form of the condition causes profound hearing loss and progressive blindness. Severe hearing loss may limit your ability to communicate effectively in many environments. Vision loss can also interfere with reading and driving.
When these medical conditions occur together, performing your daily activities can become extremely difficult. Many people struggle to maintain consistent employment because of these limitations. The SSA evaluates your medical evidence and functional limitations. Your medical records must show the presence of hearing loss and progressive vision loss. Doctors may provide test results from hearing evaluations and eye exams. Visual field testing can show how much peripheral vision you have lost.
If the SSA determines that your symptoms prevent you from working, then you may qualify for disability benefits.
HOW TO APPLY FOR SSDI AND SSI BENEFITS
If you cannot work because of Usher syndrome, then you can apply for disability benefits through the SSA. The easiest way to file an application is on the SSA’s website. You can also file an application over phone. But for that you will need to make an appointment by calling your local office. The SSA no longer accepts visitors who walk into their offices.
If you need to file an application, then start by gathering your information. First, you need medical information, which includes your medical records, doctor names, and hospital details. You will also need your work history for the past five years. The SSA reviews both your medical condition and your work background.
When you complete the SSA forms, describe your symptoms in clear language. Explain how Usher syndrome limits your daily activities. Share how often you attend medical appointments. Describe any negative impact from your medications. After you submit your claim, the SSA reviews your file. They may request additional records. They may schedule a free exam with a doctor they choose. If the SSA schedules an exam, then you must attend it or they will deny your benefits for noncompliance.
WHAT IS THE DIFFERENCE BETWEEN SSDI AND SSI BENEFITS?
The SSA offers two main disability programs. These programs are SSDI and SSI benefits. Both benefits require that you meet the medical definition of disability. However, for SSDI you must have a work history. For SSI benefits, you must meet the financial and asset rules.
SSDI stands for Social Security Disability Insurance. You qualify based on your work record and the taxes you paid while working. If you worked 40 hours a week for 5 years out of the last 10 years, then you probably qualify for SSDI benefits.
SSI stands for Supplemental Security Income. This program is based on financial need. You do not need a work history to qualify. If your income and resources are below the SSA limits, then you may qualify for SSI.
The medical standard for both programs is the same. You must show that you cannot perform substantial gainful activity (work). Your condition must last at least twelve months or be expected to result in death. Some people meet the rules for both programs at the same and they win concurrent benefits. If you are unsure which SSA program applies to you, then call one of our disability attorneys to review your situation.
USHER SYNDROME TYPE 1 IS A COMPASSIONATE ALLOWANCE
Usher syndrome type 1 is recognized as a Compassionate Allowance condition by the SSA. Compassionate Allowance cases receive faster review because the medical conditions on the list are so severe. These cases involve medical conditions that clearly meet disability standards. Those who have them cannot work. The SSA created the program to reduce long waiting periods for people with serious diseases.
Because type 1 Usher syndrome causes profound hearing loss and progressive vision loss, the SSA often approves claims quickly when medical evidence is clear. Quickly is relative. The SSA rarely grants any case in a matter of weeks. But, if you submit the medical evidence that proves you have Usher syndrome type 1, then your claim may be granted in a matter of months.
Medical records that document your symptoms are critical. Doctors must confirm the diagnosis and provide evidence of your hearing and vision loss. The SSA will want to review hearing tests and retinal exams. When your medical records clearly show Usher syndrome type 1, the SSA should approve the claim quickly.
FIND A TREATING DOCTOR WHO SUPPORTS YOUR DISABILITY CLAIM
Your treating doctor plays a central role in your disability claim for Usher syndrome. The SSA gives great weight to opinions from doctors who treat you on a regular basis. Your doctor sees you over a long period of time and understands your symptoms, limitations, and response to treatment. Your doctor should write a letter stating you meet the listing for Usher syndrome type 1.
In order to win SSD benefits, you must prove that your disability prevents you from working for 12 months in a row or longer. While you are waiting for the SSA to award benefits, you should not attempt to work. The SSA sees part time work or unsuccessful work attempts as evidence that you can work, not that you can’t.
If you don’t have a doctor or a treating provider, then we have resources for you. You will never win disability benefits unless you have medical records from a doctor that you see on a regular basis. Therefore, if you don’t have health insurance or Medicaid benefits, then we have a list of clinics you can call. Choose your state and call the free clinic for mental help:
- CALIFORNIA FREE AND LOW COST CLINICS
- COLORADO FREE AND LOW COST CLINICS
- IDAHO FREE AND LOW COST CLINICS
- NEVADA FREE AND LOW COST HEALTH CLINICS
- UTAH FREE AND LOW COST HEALTH CLINICS
Your medical records must prove you have Ushers syndrome. Therefore, seek out the best treatment that you can afford and find a supportive doctor to help you with your claim for benefits.
HIRE THE BEST SSD LAW FIRM TO WIN YOUR DISABILITY BENEFITS
Filing for disability benefits can be difficult. Even with a serious medical condition, the SSA may deny claims that lack proper medical records. A disability attorney with decades of experience can help you gather the medical evidence needed to support your claim. This evidence may include hearing tests, retinal exams, and evaluations from medical experts.
An experienced attorney understands how the SSA evaluates medical conditions. They know how to prove your case is a Compassionate Allowance claim to the SSA. If your case is coded correctly from the start, then delays are less likely. Additionally, your attorney knows how to present evidence that clearly demonstrates your limitations. Our SSD law firm has extensive experience handling disability claims that involve severe medical conditions. Additionally, our legal team understands the challenges you face with hearing and vision loss.
When you work with us, we guide you through each step of the five step disability review process. We help prepare your application and respond to requests from the SSA. Also, we help you collect your medical records. Finally, you pay us only if we win your benefits. Our attorney fee comes out of your past due disability benefits. Learn about attorneys fees in SSD claims.
Hiring a lawyer triples your chances of winning your claim. It also reduces the stress of the disability process. If you are living with Usher syndrome and cannot work, then you deserve support. We can help you pursue the benefits you need and deserve. Contact us today.
