Compassionate Allowance - Adult Onset Huntington Disease

Huntington Disease is a relatively rare degenerative brain disorder that is inherited. The symptoms of the disease usually appear in adults in their 30s or 40s, and once present, progress rapidly, causes a wide range of ever-worsening symptoms and eventually leads to death. As a highly aggressive, untreatable, and terminal condition, Huntington Disease is among the conditions that are part of the Social Security Administration’s (SSA’s) Compassionate Allowances (CAL) program, a disability initiative designed to get benefits to those who need them most and in as short of a time as possible.

Huntington Diseases Symptoms and Treatments

Adult onset Huntington disease is the most common form of this genetic disorder. It affects one in every two children of a parent that carries the gene and is unfortunately an untreatable condition for which there is no known effective therapy and no cure.

Early symptoms of Huntington disease include:

  • Behavioral changes
  • Moodiness and irritability
  • Paranoia, hallucinations and psychosis
  • Restlessness, fidgeting and uncontrolled movements
  • Imbalance and unsteady gait
  • Abnormal facial expressions and movements
  • Muscle spasms and jerking
  • Rapid or exceptionally slow, uncontrolled muscle movements

As the disease progresses, dementia and other symptoms worsen, and patients slowly lose many, if not all, of their abilities, including voluntary and involuntary functions.

As there is no effective treatment for the condition, symptom reduction therapies and supportive care are the primary focus of treatment protocols undertaken with the disease.

Applying for SSD Benefits with Huntington Disease

An application for Social Security Disability (SSD) based on a diagnosis of Huntington disease is automatically entered into the CAL program and reviewed for expedited approval. Though put in the cue for quick review, your application must still meet medical evidence requirements to receive SSD.

Huntington’s disease applications are reviewed by the SSA using the criteria that appears in the Blue Book under Section 11.17. This listing states eligibility requirements for Huntington’s as presenting with:

  • Disorganized motor function, in which case your application is then evaluated under Section 11.04B
  • OR

  • Chronic brain syndrome, when requires your application to be evaluated under Section 12.02

As Huntington’s typically presents with both of these requirements, the SSA may use both Section 11.04B and Section 12.02 to evaluate the medical evidence in your application.

While most applications for disability benefits must either meet or closely match the criteria in the applicable Blue Book listings, Huntington’s is a CAL-approved disease. This means that even if your symptoms have not progressed to the point that you meet the listing in any of the applicable sections, you can still be approved for SSD benefits.

The SSA knows the progressive and aggressive nature of Huntington disease. The disease will eventually lead to the symptoms listed in the applicable sections of the Blue Book, even if it has not yet at the time of your disability application.

Though Huntington’s is a CAL-approved diagnosis, substantial medical records are still essential to being approved for disability benefits without delay.

Getting Help with Your Huntington Disease Disability Claim

Many SSD applicants mistake the listing of a condition with the SSA’s CAL program as meaning little is required to get benefits. This is not the case. You must still complete the application process, including all required forms, and you must support your claim with extensive medical records. Getting help from a disability advocate or Social Security attorney can remove some of the burden from your shoulders and can help you get the benefits you need sooner rather than later as well.