Compassionate Allowances - X-Linked Myotubular Myopathy

As a genetic disorder that impacts muscle development and movement and sometimes breathing and feeding, X-Linked Myotubular Myopathy (XLMTM) is a severe disability. The Social Security Administration (SSA) knows that many infants born with this condition do not survive childhood. That those who do make it to adulthood require lifelong support and specialized care.

XLMTM applications for disability benefits are reviewed more quickly than most. They are also rarely denied for medical reasons, though there are still technical eligibility rules that must be met before Social Security Disability (SSD) benefits to be granted.

Disability Benefit Programs

The SSA’s disability programs include:

  • Supplemental Security Income (SSI), which is the program under which children are most often eligible for benefits. SSI has no work history requirements, but it does have financial limitations.
  • Social Security Disability Insurance (SSDI), which is a program designed for disabled workers, but can sometimes also be available to children. When kids are able to receive SSDI, it is as an eligible dependent of a deceased or disabled worker.

Compassionate Allowances

XLMTM is among the conditions the SSA knows are inherently disabling. Because of this, XLMTM is included in the Compassionate Allowances (CAL) program. CAL designation ensures applications are reviewed quickly. CAL also limits the amount of medical evidence required for approval.

Rather than waiting months for a decision on a disability claim, you will have a determination in just a few weeks. You must still ensure you provide the SSA with the medical evidence they need to make a decision on your son or daughter’s eligibility though.

Required Medical Evidence for X-Linked Myotubular Myopathy

The SSA typically uses Blue Book listings to evaluate disability claims. The Blue Book is a manual of impairments and the medical evidence required to support disability claims. There are a number of listings that may be consulted when your child’s claim is reviewed by SSI/SSDI determination staff. These include:

  • Sections 1.02 or 101.02A – Major dysfunction of a joint, due to any cause
  • Section 11.17A – Degenerative diseases not listed elsewhere
  • Sections 103.02 C or D or 3.02 – Chronic pulmonary insufficiency
  • Section 105.10 – the need for supplemental nutrition via a feeding tube
  • Section 111.06A – Motor dysfunction due to any neurological disorder

There are also several listings that XLMTM can match in terms of severity level, including:

Any or all of these listings are only used to substantiate the severity level of your son or daughter’s disability though. When determining if your child is eligible for benefits, the SSA only really needs to see the following medical evidence, thanks to the inclusion of XLMTM in the CAL program:

  • A thorough clinical history and exam notes describing the clinical features of the disease
  • A detailed family history, including any family members that had the disorder or carried the gene
  • Genetic testing results, showing the abnormality responsible for XLMTM
  • Muscle biopsy results, showing muscle development abnormalities consistent with the diagnosis

Submitting an Application

Applying for benefits on behalf of a child usually means submitting an application for SSI only. These applications are completed in person at the local SSA office. An interview is required, during which an SSA representative completes the application for you, using the information you provide. You can schedule an interview by calling 1-800-772-1213.

If you also need to apply for SSDI, you can do so at the same time as applying for SSI or you can fill out the SSDI application online via the SSA’s website at any time.

Before applying, collect your child’s medical records and your financial documentation as well. Copies of these documents must be submitted to the SSA at the time you apply or shortly thereafter. Review the Child Disability Starter Kit for additional information on the documentation the SSA will need to make a decision on your child’s claim for benefits.