Compassionate Allowance - Allan-Herndon-Dudley Syndrome

A rare genetic disorder that affects brain development of male infants even prior to birth, Allan-Herndon-Dudley Syndrome (AHDS) is an inherently disabling condition that causes lifelong mental and physical impairment for those affected by it.

Allan-Herndon-Dudley Syndrome - Symptoms and Treatments

AHDS and the symptoms of the condition may be moderate to severe. Infants born with the condition often appear normal, but typically show developmental delays that may worsen with age. Early symptoms usually include:

  • Weak muscle tone
  • Underdeveloped muscles
  • Difficulty controlling muscle movements

Later symptoms of the condition include:

  • Impaired speech
  • Difficulty communicating in general
  • Intellectual deficits
  • Failure to hit physical and/or intellectual developmental milestones
  • Toxic accumulation of T3 thyroid hormone in organs

There is no cure for AHDS, nor is there any known effective treatment for the condition. Treatments are therefore primarily focused on the reduction and control of symptoms and on providing supportive care.

Compassionate Allowance - Allan-Herndon-Dudley Syndrome

Applying for SSD with Allan-Herndon-Dudley Syndrome

As AHDS affects children, applications for Social Security Disability (SSD) benefits filed on the basis of the diagnosis are reviewed for eligibility under the Social Security Administration’s (SSA) Supplemental Security Income (SSI) guidelines rather than Social Security Disability Insurance (SSDI).

SSI is a need-based program that does not require you to have paid into the social security system in the past. As such, it requires the child meets medical eligibility guidelines and that the parents and the child have limited income and other financial resources.

Any child with AHDS is considered for SSI up to the age of 18 and may or may not qualify under the program, dependent on medical and technical information in the claim. After the age of 18, a disabled child whose disability began before the age of 22 may qualify for SSDI benefits under his or her parent’s record.

Whether you’re filing for SSI or SSDI on behalf of your minor or adult child, the application for benefits must contain extensive medical records in order to satisfy the medical eligibility portion of either program’s guidelines.

An application for disability must either meet a listing with the SSA or closely match a listing in order to qualify. Those applications that don’t meet or match a listing, but which still show severe limitations in functional ability, may still qualify for benefits after the SSA performs an evaluation of the applicant’s residual functional capacity (RFC).

AHDS applications for minor children are reviewed under the SSA’s child disability listings, which appear in Part B of the SSA’s Blue Book. The Blue Book is the manual of disabling conditions and the medical evidentiary requirements for supporting a disability claim.

Specifically, a minor child’s AHDS application is reviewed under the SSA’s listing in Section 111.06 of the Blue Book. To meet this listing, your child’s disability application and medical documentation must show:

  • Ongoing motor function deficits affecting at least two extremities that continues even when prescribed therapies are followed, and which impairs normal daily activities based on the child’s age
  • AND

  • Disruption of fine motor skills or gross muscle movements
  • OR

  • Interferes station or gate (standing, balancing or walking)

If your child’s application does not meet the listing in Section 111.06, the SSA will review the claim for a potential match to either Section 11.04B (in Part A) or to Section 111.07B (in Part B) of the Blue Book.

After the age of 18, a disabled child’s application for SSDI benefits is reviewed under the requirements for adult disability, though the medical evidentiary requirements in Part B of the Blue Book may still be referenced by the SSA.

This is because there is no dedicated listing for AHDS in the SSA’s adult listing of conditions.

SSA Compassionate Allowances and AHDS

Whether applying for disability benefits on behalf of a minor or adult child with AHDS, your son or daughter’s disability application is qualified for expedited processing under the SSA’s Compassionate Allowances (CAL) program.

The CAL program is designed to address claims for disability more quickly for individuals that suffer from inherently disabling and/or terminal illnesses.

While the CAL program means your child’s application will be reviewed faster to determine eligibility, approval for benefits is not guaranteed. Your child’s application must still satisfy the technical and medical requirements for eligibility under SSI or SSDI, whichever applies to your child’s case based on his or her age.

Getting Help with Your Allan-Herndon-Dudley Syndrome Disability Claim

Whether your child’s application is being reviewed for eligibility under SSI or SSDI, the application and review processes can be confusing. Having the assistance of a disability advocate or Social Security Disability attorney can make the application process simpler to complete and the entire review process easier to understand.

Additional Resources