Getting Disability Benefits for Werner Syndrome or Progeria

Most people with adult progeria (Werner Syndrome) or Hutchinson-Gilford Progeria will qualify for disability benefits through Social Security.

Progeria is a genetic disorder that causes a person to age abnormally and dramatically fast. The most well known form of progeria is Hutchinson-Gilford progeria, which begins in a child before the age of two. Adult progeria, called Werner Syndrome, usually doesn’t become evident until the second decade of life. This article will discuss both diseases.

Werner Syndrome

Werner syndrome is a form of progeria that is often not diagnosed until a person is in his or her twenties. Werner Syndrome is more common than Hutchinson-Gilford progeria, but much less well known.

Symptoms of Werner Syndrome include:

  • muscle atrophy
  • hair loss
  • premature development of cataracts, and
  • a higher tendency for the development of cancerous and non-cancerous tumors.

Werner Syndrome, also known as adult progeria, can be definitely diagnosed only by DNA testing. Treatment depends on the specific symptoms of the disease. The prognosis for a person with Werner Syndrome also depends on the organs affected by the disorder, but people with Werner’s Syndrome live on average into their 40s and 50s.

Can I Get Disability for Werner Syndrome?

Whether or not you can get disability for your Werner Syndrome depends on the symptoms you experience and how they affect your ability to work. To be eligible for benefits, Werner Syndrome must prevent you from doing a sunstantial amount of work for at least 12 consecutive months, or be expected to result in your death. Give the chronic nature of Werner Syndrome, this duration requirement should not be difficult to meet.

To decide whether you can work, the SSA will look first to see if your Werner Syndrome meets the requirements of one of the conditions named in its Listing of Impairments. While there is no specific listing for Werner Syndrome, depending on your symptoms, you might meet a number of listings, such as the one for lower extremity fracture. Bone density problems and the inability of fractures to heal and rejoin properly are not uncommon for people with Werner Syndrome due to problems with bone density. If you have suffered a fracture that has failed to heal, you may be eligible for automatic approval under the listing for Listing 1.06 (Fracture of the Femur, Tibia, Pelvis, or One or More of the Tarsal Bones) if:

  • there is no evidence of a solid union of the fracture and the fracture is not clinically solid (as demonstrated on medically acceptable imaging such as an MRI or x-ray), and
  • you can no longer walk at a reasonable pace and over a sufficient distance needed to perform day-to-day activities (like cleaning or cooking), or to travel alone to places such as doctor’s appointments, school, or the grocery store. Examples of this are if you need two crutches, two canes, or a walker in order to move about.

There may be other listings under which you may be able to get approved, such as the listing for vision loss or heart disease, depending on the symptoms of your Werner Syndrome. It would be helpful to speak with an attorney to see what your options are.

What If I Can’t Meet a Listing?

Even if your Werner Syndrome doesn’t meet a listing, you may still get approved if the SSA concludes that your symptoms or limitations prevent you from doing any kind of work.

To make this decision, the SSA will use the medical evidence in your file to prepare a residual functional capacity (RFC) assessment. Your RFC is what physical parts of a job you can do full time. If your RFC shows you don’t even have the ability to do a sit-down job, you will be approved for benefits.

Work-related physical activities that the SSA will assess include, for example:

  • sitting
  • standing
  • walking
  • lifting
  • carrying
  • pushing
  • pulling
  • bending
  • stooping
  • fingering, and
  • feeling.

For example, if your Werner Syndrome has resulted in muscle wasting, then your ability to lift and carry may be limited. Also, if you have developed arthritis in your spine, you may be unable to bend or stoop. This impairment alone will often result in an approval of benefits.

Your treating doctor must also prepare an RFC report for you if you want to get disability benefits outside of a listing. The SSA must give great weight to the opinion of your doctors, so if your doctor submits documentation that you have multiple physical limitations, this will help your application. The doctor who prepares your RFC should be a specialist in treating people with Werner Syndrome or your related symptoms (for example, an orthopedist).

Hutchinson-Gilford Progeria

Children with Hutchinson-Gilford progeria have a life expectancy of about 13 years, but some affected by the disease may live into their twenties. The most common causes of death for children with progeria are stroke and heart attack, conditions most commonly associated with age.

There is no cure for progeria, but the use of cholesterol-lowering medications, low dosages of aspirin, and blood-thinners may help lower the risk of stroke or heart attack.

Can My Child Get Disability for Progeria?

Children with progeria are eligible for SSI (Supplemental Security Income), as long as they are otherwise eligible for benefits (discussed in the section below). Because of the prognosis of children with progeria, the Social Security Administration (SSA) has listed progeria as a condition that can be fast-tracked for approval under its Compassionate Allowance program.

To be approved for SSI benefits, your child must be diagnosed with Hutchinson-Gilford progeria and have impaired growth that results in:

  • a sustained decrease in height of more than 15% in height, or
  • sustained height of below the 3rd percentile on CDC growth charts.

When you apply for SSI benefits, tell the SSA immediately that your child has Hutchinson-Gilford progeria so that the application can be handled properly.

What Benefits Can My Child Get if She is Approved?

Supplemental Security Income (SSI) is the only benefit available to disabled children. To get SSI, the child’s family must meet certain resource and income tests (in addition to the medical requirements above).

To determine eligibility, the SSA will look at your income and resources and deem (or count) a portion of your income and resources to your child. Not all of your income is counted, however. For example, the SSA will not include the following sources of income:

  • Temporary Assistance for Needy Families (TANF)
  • general assistance (like food stamps), and
  • payments for foster care children (who aren’t getting disability).

The SSA will also exclude certain resources when determining eligibility such as:

  • the value of the home you live in
  • the value of one car, and
  • any funds in a pension.

You can read in detail about how deeming works by reading our article on Qualifying for SSI as a Child: How Family Income Deeming Works.

In addition to meeting the income and resource requirements, your child must be unmarried and under the age of 18. You can learn more by reading our article on Disability Benefits for Children.

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