There are many different disorders that cause dwarfism that affect thousands of Americans. The most common from is achondroplasia, a type of skeletal dysplasia, which affects about 70 percent of those with dwarfism, the National Library of Medicine explained.
If your or a loved one's dwarfism is negatively affecting your ability to work, you may qualify for assistance. The Social Security Administration (SSA) offers two financial benefit programs for individuals with disabling conditions so you can make ends meet.
Financial Costs of Dwarfism
Dwarfism is extremely expensive disorder, both because of the treatments and of the complications. Children with dwarfism, in addition to having problems with their skeletal system, may also suffer from hearing loss, vision loss, heart defects, intense pain, arthritis, and breathing problems, which can follow them into adulthood and drive up healthcare costs substantially throughout their lifetime.
There are different types of treatments for dwarfism will ultimately depend on the underlying condition, but at a high price. Surgeries can change directions bones are growing, correct the spine, and more, but many patients must undergo many to deal with the symptoms. The operations, hospital stays, physical therapy, and recuperation can cost tens of thousands of dollars.
For example, some patients decide to have limb lengthening surgeries, which make them the taller than their condition allows. Height Lengthening reported their operations usually costs between $50,000 and $75,000. Traditional, more invasive leg lengthening surgeries, according to NBC News, often go as high as $200,000 and require three to four months of constant attention as the patients legs are stretched after being broken.
Another common treatment for children is growth hormone therapy, which stimulates growth and cell reproduction by almost daily injections. It goes for about $52,000, but isn't always covered by insurance providers, Medscape explained.
Medical Requirements in the Blue Book
The SSA evaluates all disability applications first with the Blue Book. The Blue Book is the SSA's official list of impairments and requirements that qualify for disability benefits. If you meet or equal a listing, you will automatically be approved.
There is no specific listing for dwarfism, but there are a number of listings you could apply with:
Section 100.00—Low Birth Weight and Failure to Thrive (Children)
- Failure to thrive, with three weight to height measurements within a year, but 60 days apart, that show the child is under the third BMI percentile.
Section 101.00 (Children) and 1.00 (Adults)—Musculoskeletal System
- Reconstructive surgery of a major weight-bearing joint that restricts the ability to walk that has lasted or is expected to last at least a year.
- Major dysfunction of joint, due to any cause, (including arthritis) that causes significant deformity, chronic joint pain, and/or limitation of movement in either one weight-bearing joint or both upper extremities.
- Any disorder of the spine, that causes nerve root compression, pain, motor loss, restriction of movement, reflex loss, clumping of nerves supporting the brain and spinal cord (spinal arachnioditis), or narrowing of the spine in the lumbar region (lumbar spinal stenosis).
Section 2.00—Special Senses and Speech
- Loss of central visual acuity, or clarity, with vision after best correction at 20 over 200.
- Contraction of the visual field, with widest diameter around a point of fixation being 20 degrees or less, or a mean deviation (MD) of 22 decibels or less.
- A visual field efficiency measure, which is a combination of your visual acuity and field, of less than 20 percent or a visual impairment value of 1.00 or more, both after best correction.
- Hearing loss not treated with cochlear implants, with the average air conduction being 90 decibels or greater and bone conduction being 60 decibels or greater, or word recognition score of 40 percent of less.
Section 3.00—Respiratory System
- Sleep related breathing disorders, such as sleep apnea, that don't respond to treatment, resulting in disturbed sleep pattern, which can cause severe daytime sleepiness and fatigue, memory loss, and mental confusion. This is either evaluated under either:
- Cor pulmonale with chronic pulmonary hypertension, causing a pulmonary artery pressure of 40 mm Hg or more, or low blood oxygen.
- Organic mental disorders, with disorientation of time and place, memory impairment, hallucinations, delusions, changes in personality, mood disturbances, emotional instability, or loss of 15 or more IQ points.
Section 4.00—Cardiovascular System
- Congenital heart disease, with poor circulation and blood oxygenation (cyanosis), a hematocrit level of 55 or more, shunting, or pulmonary vascular obstructive disease.
Qualifying Without Meeting a Medical Listing
Because many adults with a disorder that causes dwarfism are able to lead normal lives, you may not be approved simply because of short stature. However, if there are significant complications but you still don't meet a disability listing, then you may be approved with a medical-vocational allowance if you can't earn at least $1,130 per month, which is the SSA's minimum monthly income in 2016.
The SSA uses a series of grid rules to look at your condition and limitations and will decide the level of work it believes you can do (sedentary, light, medium, heavy, very heavy). Then, it will use your highest education level and work history to find jobs you can reasonably do in your work category. The final result of this is your Residual Functioning Capacity (RFC).
Many symptoms of dwarfism disorders may make an individual unable to work, like vision loss, hearing loss, arthritis, chronic pain, trouble walking or standing, inability to drive or travel alone, sleep apnea and mental confusion, respiratory problems, and heart problems. Depending on the amount of healthcare needed, you may spend too much time in the hospital or remission to keep a regular full time job.
Those who have done light or sedentary jobs and/or who have a college degree normally have a lower chance of approval, because those types of jobs tend to be easier to do with a disability. Individuals without higher education or who have worked jobs such as food service, retail, nursing, or construction.
Applying for Social Security Disability
If your dwarfism and complications are severe enough that it interferes with you ability to perform daily living activities or work activities, talk to your doctor about your likelihood of qualifying for disability benefits through either the Blue Book or an RFC. The application can take up to two years, so if approval isn’t likely, the time and effort of the application may not be worth it.
You must include all the necessary documentation. In addition to all relevant medical information, you’ll also need personal documents, such as a birth certificate and tax information. Sending incomplete forms or insufficient medical evidence could force the SSA to take the time to collect the information themselves or deny you benefits.
For dwarfism, important medical evidence will include:
- Physical examination and measurements, to look for distinct facial features of certain dwarfism disorders and to determine growth rates.
- Imaging tests, such as X-rays, MRIs, CT scans, or PET scans to find any abnormalities with bones, the pituitary gland, or the hypothalamus (both of which are important for hormone function).
- Genetic testing, to find any genetic abnormalities.
- Hormone testing, to check levels of hormones involved in growth and development.
- A detailed report from your doctor describing the condition causing your dwarfism, the complications of the disorder, the limitations you experience, and important pieces of your medical history.
- Summaries of any related surgeries, hospitalizations, treatments, and their outcomes.
You can apply for Social Security Disability Insurance in person at your local SSA office, over the phone, or on their convenient online application. You can only apply for Supplementary Security Insurance in person at an SSA office. Whether you’re applying online or in person, make sure you application has no errors and no questions are left blank. The SSA deals with thousands of cases on a daily bases, and missing or wrong information can also cause a denial of benefits, or at the very least a delay.
If there is any new medical evidence during the process of the application, such as hospitalizations, doctor’s visits, or medication alterations, you need to notify the SSA immediately, because it will only help your case. The more medical proof you have of the limitations of your dwarfism, the higher your chance of approval will be.
If you’re approved for SSD, your spouse and children may be entitled to benefits as well. Visit our pages on Social Security Disability Insurance to learn more about the necessary forms and requirements for SSD applications.