Certain health conditions are approved for expedited review for Social Security Disability (SSD) benefits, including Stage V Retinopathy of Prematurity (ROP). Faster review and virtually guaranteed approval are available through the Compassionate Allowances (CAL) program.

The CAL Program

While CAL applications are essentially guaranteed approval, you must still complete the full application process and must also provide the Social Security Administration (SSA) with the required medical evidence to prove the diagnosis, severity level, and the prognosis for your child’s ROP.

Supplemental Security Income

Disability benefits for children are available through the Supplemental Security Income (SSI) program, which is the SSA’s program for individuals with limited income and other financial resources. Some sources of income and some types of assets count toward financial eligibility for SSI, while others do not.

Qualifying Medically for SSD Benefits

The SSA always requires specific medical evidence for any condition for which application is made. Disability benefits for ROP are granted when the following evidence is presented:

• Visual testing, including acuity and field testing in older children
• Diagnostic staging of the ROP, including documentation of blood vessel involvement and retinal detachment
• A thorough clinical history, including physical features of the ROP and the onset and progression of symptoms

Even when your child’s application is not qualified under the CAL program, it can still be approved for benefits following the standard SSI review procedures. In these cases, the SSA will thoroughly review your child’s medical records and will compare them with listings in the Blue Book, which is a manual of known disabling conditions.

The sections of the Blue Book that apply to applications for ROP in stages I through IV include:

• Section 102.02 – Loss of visual acuity
• Section 102.03 – Contraction of the visual field
• Section 102.04 – Loss of visual efficiency

If your child’s ROP is stage 5 and therefore qualified for CAL consideration, you will have a decision on your claim for benefits in just a few weeks. However, if his or her ROP is stage I through IV, then your wait for a decision will be longer. The average time to receive a decision on a non-CAL condition is four months.

Applying for Benefits

SSD applications for children must be completed during a personal interview. That interview will take place at the local SSA office. Schedule the interview in advance by calling 1-800-772-1213. Be sure to provide the SSA with copies of your child’s medical records and the necessary financial statements at the time you apply.

As a late stage, aggressive cancer, Peritoneal Muncinous Carcinomatosis automatically meets the medical eligibility criteria for Social Security Disability (SSD) benefits. The Social Security Administration (SSA) also understands that time is crucial in reviewing applications filed with this diagnosis. For this reason, Peritoneal Mucinous Carcinomatosis is included in the SSA’s Compassionate Allowances (CAL) program, which is designed to get you a decision on your eligibility for disability benefits as quickly as possible.

Nonketotic Hyperglycinemia (NKH) is a genetic disorder present at birth and the Social Security Administration (SSA) understands its inherently debilitating nature. Given this, NKH is included in the SSA’s Compassionate Allowances (CAL) program, which ensures applications filed with the diagnosis of NKH are reviewed as quickly as possible.

Disability Benefits

It is typically Supplemental Security Income (SSI) for which disabled children qualify for disability benefits. The program is need-based, which means there is a financial component to eligibility. In order for the SSA to find your son or daughter eligible, you must have very limited income and other financial resources or assets.

Compassionate Allowances

CAL designation for NKH means your child’s application for benefits will be reviewed more quickly and that you should have a decision on eligibility within just a few weeks. It does not however mean that you do not have to go through the standard application and review processes. You will still need to apply for benefits Social Security Disability (SSD) on behalf of your child. You must also still ensure your child’s medical records contain the appropriate documentation for meeting the SSA’s evidence requirements.

Medical Evidence

Proving the NKH diagnosis is the first piece of information the SSA must confirm. This can be achieved through:

• Enzyme analysis
• DNA analysis
• Lab test results that show high plasma levels
• Urine glycine concentration results that are elevated
• Elevated glycine concentrations in cerebral spinal fluid (CFS)

The SSA also needs to see physical findings and clinical history information that support the diagnosis and document the severity of your son or daughter’s symptoms.
Treatment for NKH is also symptom-specific, which means the SSA needs to see details of the symptoms and the treatments your child is undergoing as well as the effects of those treatments.

The minimum information that the SSA must see in your child’s records in order to find him or her medically eligible for SSD benefits includes:

• Glycine concentrations in blood work and CFS test results
• AMT and GLDC gene mutations documented through molecular genetic testing
• Severity level of seizures, if your child experiences them
• Developmental delays or intellectual deficits, documented through age-appropriate evaluations

Applying for Benefits

Because you are applying for benefits on behalf of a minor child, you will need to apply in person at your local SSA office rather than online via the SSA’s website. You should additionally understand that in-person applications are completed through a personal interview, with an SSA representative filling out the documents for you and collecting the necessary details from you.

You should collect as many of the necessary records as possible before your interview date. Provide copies of your child’s medical records and school records, if applicable, to the SSA representative at the time you apply. You will also need your financial information and any financial records.

Following the submission of your application, you will wait at least a couple of weeks for a decision. Applications file on most CAL designated conditions receive a decision within four weeks.

It is very unusual for the SSA to deny a CAL claim, but they may request additional information from you, if your child’s records are lacking in some way. This makes it that much more crucial that you go to the appointment prepared to provide the SSA all the essential details of your child’s Nonketotic Hyperglycinemia and the limitations it imposes on his or her everyday life.

As a rare genetic disorder, Neurodegeneration with Brain Iron Accumulation (NBIA) is among the conditions the Social Security Administration (SSA) recognizes as automatically meeting the medical criteria to receive disability benefits. This ensures your child’s application Social Security Disability (SSD) benefits will be reviewed more quickly, but it does not mean automatic approval. You must still complete the application and provide the SSA with the appropriate medical records to satisfy evidentiary requirements.

The Classic or Infantile Onset form of Menkes Disease is approved for rapid review under the Social Security Administration’s (SSA’s) Compassionate Allowances (CAL) program and is “automatically” medically approved for disability benefits. That being said, you must still apply for benefits, provide the SSA medical evidence, and meet the technical/financial criteria in order for your child to receive Social Security Disability (SSD) benefits.

The CAL Program

CAL is a program that is intended to get benefits to those who need them most in as rapid a manner as possible. It ensures applications filed on a CAL designated condition are expedited through the review process.

Rather than waiting four or more months for a decision on your child’s application for SSD, you will have a decision in a matter of weeks and Menkes Disease, in the infantile onset or classic form, is essentially guaranteed to meet the SSA’s medical eligibility requirements, provided you have the appropriate documentation to prove the diagnosis and the severity level of the condition.

The SSA must see certain documentation in your child’s medical records to support the definitive diagnosis of Menkes Disease, classic or infantile onset form, and to substantiate the severity level of your child’s condition.

To prove the diagnosis, the SSA typically needs to see:

• Blood tests showing low copper and ceruloplasma levels
• Biopsy results and cultures that document abnormalities in metabolizing copper
• Menkes abnormalities in the results from hair after examination under an electron microscope
• Genetic test results showing mutations in the ATP7A gene.

To substantiate the severity level, the following evidence is also required:

• Clinical history and exam notes that describe the onset of the disease and the features of the illness.
• CT and/or MRI results showing complications from the disease. These may include:
• Nerve lesions or atrophy
• Ruptures or blockages in the arteries
• Psychological and intellectual exams that document the presence of any developmental or cognitive delays or impairments.

The SSA may also review the listing in the Blue Book for catastrophic congenital disorders that affect multiple body systems, which appears in section 110.08.

Disability Programs from the SSA

Children may, under some circumstances, qualify for survivor benefits under the Social Security Disability Insurance (SSDI) program; however, it is usually the Supplemental Security Income (SSI) program through which minors receive disability benefits.

SSI is a need-based program and as such requires that your son or daughter has very limited income and other resources or assets available with which to pay for everyday needs. Your child’s finances and your own financial data will both be taken into account when determining if he or she is eligible to receive SSI.

Applying for Benefits

Applications for SSD benefits for children must be competed through an in-person interview at the local SSA office. You will need to schedule an interview date in advance and go to the interview prepared to provide the SSA all the required information, in order to avoid delays in the review of your claim. The information you need includes thorough medical records as well as financial data and any school related information, if applicable.

MECP2 Duplication Syndrome is a condition the Social Security Administration (SSA) recognizes as qualified for Social Security Disability (SSD) benefits. As a rare genetic disorder that typically presents early in infancy and has severe developmental disability implications, MECP2 Duplication Syndrome is also included in the SSA’s Compassionate Allowances (CAL) program, which guarantees quicker processing of your child’s application for benefits.

CAL Designation

While CAL designation ensures your child’s application will be processed as quickly as possible and virtually guarantees approval as a medically qualified impairment, you must still file an application and present the appropriate medical records to the SSA. It is also important to understand that medically qualifying for benefits is only one aspect of your child’s eligibility. There are also technical or basic eligibility requirements for each of the SSA’s disability programs.

Medical Evidence Requirements

Your child’s medical records must contain certain key pieces of evidence in order for the SSA to find your child medically eligible for benefits. A definitive diagnosis must be proven through standard medical means. Evidence showing the severity level of your child’s MECP2 Duplication Syndrome symptoms must also be present in your child’s records.

Documenting a definitive diagnosis requires:

• Genetic tests that show the duplication of the Xq28 in the MECP2 chromosome
• Physical findings that record the presence of typical symptoms of the syndrome, including:
• Trouble eating or swallowing
• Gastroesophageal reflux
• A failure to thrive
• Abnormalities in muscle tone
• Mental and psychological and/or developmental assessments may also be included in your child’s medical records to document the presence of intellectual and physical developmental delays.

The presence of the duplicate gene is not enough to grant benefits. Cognitive and neurological changes must be documented within your child’s medical records in order for the SSA to find your child medically qualified for benefits.

The SSA may also review several listings within the Blue Book to support the determination of disability for applications filed on the basis of MECP2 Duplication Syndrome. These include:

• Section 111.06 – Motor dysfunction, due to any neurological disorder
• Section 111.07 – Cerebral Palsy
• Section 112.05 – Intellectual disability

SSD Benefit Programs

The SSA has two disability programs: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Children can sometimes qualify to receive SSDI as survivor benefits, but more often than not, it is SSI benefits for which they qualify.

It is important to understand that SSI is a need-based program. As such, it pays benefits to qualified disabled adults and children who have significant financial need. It has strict income and financial resource limitations.

Applying for Benefits

To apply for benefits on behalf of a minor child with MECP2 Duplication Syndrome, you must participate in an interview with an SSA representative. The interview will be conducted at your local SSA office and require you make an appointment in advance. You will need to provide your child’s medical history and as many records as possible at the interview. You will also need to give the SSA details on your financial situation. To make an appointment, call the SSA’s main helpline at 1-800-772-1213.

Nephrogenic Systemic Fibrosis (NSF) is typically a debilitating and often progressive condition that the Social Security Administration (SSA) recognizes as “automatically” qualified for disability benefits. One of the cornerstones of NSF is renal dysfunction and there are a number of complications that can result from the condition as well. The severity level that is typically seen with NSF has led the SSA to include the condition in the Compassionate Allowances (CAL) program.

CAL Designation

The CAL designation for NSF ensures that your application is reviewed more quickly and that you receive a decision on your eligibility as quickly as possible as well. CAL conditions are also rarely denied benefits, though you must still provide the SSA with the appropriate medical evidence to prove the severity level of your NSF.

Medical Evidence Requirements

The SSA needs to see specific medical evidence in order to find your NSF severe enough to prevent you from working. A definitive diagnosis is the first critical piece of data they must establish through the review of your medical records.

Diagnostic tests that are typical in an NSF application include:

• Antinuclear antibody tests
• Lab tests showing Hepatitis B or C infection
• Renal insufficiency test results that may range from mild to severe and persistent
• Collagen bundles and other clinical signs of NSF skin thickening, documented through biopsies

The minimum evidence required for the SSA to approve an application with a diagnosis of NSF includes:

• Records showing the presence of chronic kidney disease, whether mild, moderate or severe
• Clinical history documentation showing the fibrotic changes in skin and other tissues, including detailed descriptions of the limitations those changes have induced
• Lab test results that show serum creatinine blood levels consistent with NSF

In determining the severity level of your NSF, the SSA may additionally use the Blue Book listing for impaired kidney function. That listing appears in section 6.02. Section 106.02 may also be consulted when the SSA evaluates your claim, especially if you are not on dialysis.

If fibrotic changes have affected your heart and/or lungs, the SSA may also utilize the following listings from the Blue Book:

• Section 1.02 – Major dysfunction of a joint
• Section 14.04 – Systemic sclerosis

These listings are not exact matches for your NSF, but are instead used by the SSA to determine if your NSF medically equals these conditions in severity level.

SSD Benefit Programs

There are two disability programs through which you may qualify for benefits from the SSA:

• Social Security Disability Insurance (SSDI)
• Supplemental Security Income (SSI)

You must medically qualify for benefits to receive SSD through either or both of these programs. You must also meet the technical/financial requirements to receive SSD through either program.

• For SSDI, you must have the work credits necessary and must also have income that does not exceed the SGA, or substantial gainful activity threshold.
• For SSI, you must have very limited financial resources, including income and assets.

Applying for Benefits

Applications for SSD can be submitted online, with the SSA’s website, or in person, at your local SSA office. If you apply in person, schedule an appointment in advance to avoid further delays. Online application requires no wait, and you can fill out the full application online and submit it electronically. Whichever way you decide to apply however, you should follow up by submitting copies of as many of your medical records as possible to your local SSA office.

As a highly aggressive and rare form of cancer, Malignant Germ Cell Tumor (MGCT) automatically qualifies you medically for disability benefits from the Social Security Administration (SSA). That being said, you must still apply for benefits, provide the SSA with the appropriate medical evidence, and also meet the technical eligibility requirements for receiving benefits through either or both of the SSA’s disability programs.

Disability Programs

MGCT typically develops in adults, but in rare instances can occur in children. If you are applying for benefits for yourself, you may qualify for two programs from the SSA:

• Social Security Disability Insurance (SSDI), which requires you are a disabled worker that has work credits built up from your previous employment.
• Supplemental Security Income (SSI), which has no work credit requirements, but does set strict limits on income and assets or financial resources.

If you are applying instead for benefits on behalf of a minor child, SSI is the program for which he or she is most likely to qualify.

In addition to these programs, MGCT also qualifies for the SSA’s Compassionate Allowances (CAL) program, which is intended to get applications filed on specific conditions reviewed more quickly. The average applicant waits four or more months for a decision on their initial application for disability. CAL designation for MGCT means you will have a decision on your application in just a few weeks instead.

Medical Evidence

Minimal medical evidence is required by the SSA for granting eligibility for disability benefits. The bare minimum that your medical records must contain includes:

• A thorough clinical history documenting the onset of the disease, the diagnosis, the methods used to obtain that diagnosis, and any treatments employed. The affects of treatments must also be included as should the prognosis.
• Physical findings and physical exam notes which describe the extent of the disease and its clinical features. The details of these reports will depend largely on the location of the tumor(s) and the body organs and systems affected.
• Pathology reports documenting the findings from biopsies performed.
• Results of imaging tests showing the extent of the MGCT and the size of the tumor(s).

Your other medical records can strengthen your claim for disability benefits and should also be included when applying. However, the documentation listed above is the essential information the SSA must have in order to grant eligibility for SSDI and/or SSI benefits.

Applying for Benefits

If you are applying for benefits on behalf of a minor child, you will need to call 1-800-772-1213 to schedule an appointment with your local SSA office. Applications for children are facilitated by an SSA representative who completes the forms required during an in person interview at the local office.

If you are instead applying for benefits for yourself, you can also schedule an interview and complete your application in person, or you can complete the application process online, via the SSA’s website, and follow up by providing copies of your Malignant Germ Cell Tumor and other medical records to your local office after submitting your application digitally.

Malignant Gastrointestinal Stromal Tumor (MGST) is a rare form of cancer that is usually diagnosed at an advanced stage. It can be a slow progressing or highly invasive cancer. Regardless of which form your MGST takes, it does qualify for Social Security Disability (SSD) benefits.

Leiomyosarcoma (LMS) can occur in any of the body’s soft tissues, and regardless of where it begins, it can automatically qualify you medically to receive Social Security Disability (SSD) benefits through either or both of the SSA’s disability programs.

SSA’s Programs

You may be able to receive disability benefits through: