Social Security’s new Huntington’s disease listing

New Social Security Administration (SSA) disability requirements for all neurological disorders, including Huntington’s disease (HD), went into effect on Sept. 29, 2016.

The requirements are found in SSA’s Listing of Impairments. The listings describe the medical conditions, severity and evidence required for an impairment to warrant a finding of disabled. (Listings for adults and children are separate, both organized according to body systems—musculoskeletal, senses, respiratory, cardiovascular, etc.)

SSA changed the listing regarding neurological disorders, marking the only revision of SSA’s HD listing since it was first published on Dec. 6, 1985. The new listing, 11.17, alters the way SSA analyzes an HD claim. All claims currently pending and awaiting decision, as well as those not yet filed, will now be analyzed under the new listing requirements.

Here is what you need to know about the new listing:

The major change

Previously, listing 11.17 included language to evaluate HD under either listing 12.02 for Organic Mental Disorders (looking at cognitive and behavioral symptoms of HD) or listing 11.04B for Vascular Brain Injury (looking at physical symptoms of HD).

Now, SSA will evaluate HD patients using one listing, 11.17, specific to HD and other neurodegenerative disorders of the central nervous system to evaluate both physical and cognitive symptoms. Other listings will not have to be utilized (although it will still be important to consult certain definitions, particularly 11.00G). Under the new listing, those with HD can either meet the requirements based solely on physical symptoms (11.17A) OR a combination of physical and cognitive symptoms (11.17B).

The new way to analyze physical symptoms

Previously, listing 11.04B required disorganization of motor function in two extremities that resulted in sustained disturbance of gross and dexterous movements, or gait and station. Now, 11.17A requires disorganization of motor function in two extremities that results in extreme limitation in the ability to stand up from a seated position, balance while standing or walking, or use the upper extremities. “Extreme” limitation is a more severe degree of limitation than “sustained disturbance.”

SSA defines extreme limitation as the ability to stand from a seated position, or standing and walking as requiring the assistance of another person or an assistive device such as a walker, cane, or two crutches (11.00G(1)).

Extreme limitation in using your upper extremities is defined as loss of function that very seriously limits your ability to independently initiate, sustain, and complete work-related activities involving fine and gross motor movements.

This means that patients who show signs of imbalance, difficulty with tandem gait, falling or wide-based gait, who would have met the requirements of listing 11.04B previously, will no longer meet the requirements of listing 11.17A if they are not using assistive devices or displaying serious limitation in fine movement.

The new way to analyze cognitive symptoms

The new listing provides additional examples of cognitive and behavioral limitations and symptoms that can be analyzed within Listing 11.17 that were not previously included under the old language. An applicant can now meet the requirements of 11.17B by exhibiting marked limitation in physical functioning combined with marked limitation in one of the following:

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

Previously, medical records had to substantiate disorientation to time and place, memory impairment, perceptual or thinking disturbances, change in personality, change in mood, emotional ability, or loss of 15 IQ points. Now, SSA includes other signs of cognitive impairment including, among other things, inability to identify and solve problems, inability to follow instructions, difficulty responding to social cues or handling conflicts with others, difficulty maintaining personal hygiene, and inability to maintain regular attendance at work (11.00G(3)(i)-(iv)). Alternatively, if an individual is not yet exhibiting physical symptoms, he or she can still meet the requirement of listing 11.17B by demonstrating extreme limitation in one of the four areas of mental functioning or marked limitation in two of the four areas of mental functioning as provided by 11.00G(1).

Those are the essential changes to the listings, though how they apply to each person will vary from case to case. The national HD patient advocacy group, Huntington’s Disease Society of America, who worked on getting this change made, sees the new listing as a step in the right direction. They hope to continue their work on making the disability process easier for HD patients through the Huntington’s Disease Parity Act. You can read more about their take on the listing change here.

As always, CVC is here to help advocate for our patients by applying individual medical evidence to these new requirements and making compelling arguments before the SSA.


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