SSA Disability Guideline
Navigate the SSA Disability Application with Our Comprehensive Guideline
Navigating the Social Security Administration’s disability benefits application can be daunting. Our 51-page SSA Disability Guideline is designed to simplify this process, providing step-by-step guidance to ensure a smoother journey toward approval.
SSA Disability Guideline Overview
This guideline, while written with the superficial siderosis community in mind, is applicable to all compassionate allowance conditions, neurodegenerative disorders, or any condition that qualifies for social security disability benefits. Whether you’re applying for SSDI or SSI, following the steps outlined in this guideline can significantly reduce the time needed for successful approval.
Definition of Disability
According to the Social Security Administration, you are considered disabled under Social Security rules if:
- Your medical condition prevents you from doing the work you did before.
- Your medical condition prevents you from adjusting to other work.
- Your disability has lasted or is expected to last at least one year or result in death.
Qualifying Conditions
- Difficulty with walking, maintaining your balance, or engaging in other physical activities
- Trouble using your arms, hands, and fingers to carry out tasks
- Impaired Vision
- Cognitive issues which interfere with tasks such as memory, attention, problem-solving, multi-tasking, processing, planning, and prioritizing
- Inability to function either physically or cognitively for prolonged intervals of time because of severe fatigue
- Breathing, speaking, or swallowing impairment
- Diagnosed with severe and persistent depression
- Severe and persistent pain
- Profound hearing impairment for those over 50
- Introduction
- The application process
- Updates to Qualifying Neurological Impairments
- CAL Evaluation Listing
- SSA SUGGESTED PROGRAMMATIC ASSESSMENT*
- SSA Listing for Evaluation
- Getting Started Planning
- Substantial Gainful Activity (SGA)
- Useful Tools
- Healthcare Provider Planning
- Information Gathering
- Healthcare Provider Evidence
- Submit Your Application
- Prepare For a successful interview
- During your interview
- After your application
- If you are denied
- When you are approved
- If you need assistance filing your application
- Appendix-PS
Introduction
The Social Security Administration (SSA) recognizes SS as a chronic disorder or “impairment” that could cause a disability severe enough to prevent a person from working. Due to the severe progressive nature of the disease, in 2018, the US Social Security Administration added superficial siderosis to the Compassionate Allowance list of conditions that allow for the fast-tracking of disability claims. Any of the following (or other) SS symptoms may become severe enough to interfere with a person’s ability to continue in the workforce:
- Difficulty with walking, maintaining your balance, or engaging in other physical activities
- Trouble using your arms, hands, and fingers to carry out tasks
- Impaired Vision
- Cognitive issues which interfere with tasks such as memory, attention, problem-solving, multi-tasking, processing, planning, and prioritizing
- Inability to function either physically or cognitively for prolonged intervals of time because of severe fatigue
- Breathing, speaking, or swallowing impairment
- Diagnosed severe and persistent depression
- Severe and persistent pain
- Profound hearing impairment for those over 50
A person with superficial siderosis (SS) who cannot work for a continuous eight hours daily, for five consecutive days weekly, due to multiple SS-related impairments or other related conditions may qualify as permanently disabled.
The application process
Applying for Social Security Disability is a complex process that requires a close partnership between you, the person with SS, and your healthcare providers. As part of the application process, the Social Security Administration considers your input along with information provided from your healthcare, family members, friends, work colleagues, and your employer, who can supply first-hand knowledge of the impairments that qualify you as disabled under the law. Before applying, you and your healthcare providers must understand the specific criteria established under Social Security Administration regulations. Claims are often denied because applicants and healthcare providers do not provide the correct information in the correct format. This guideline is meant to help people with SS, and their healthcare providers work together to submit a successful disability application.
You should begin with a frank conversation with your healthcare provider and family about your future and plan. Should your disability progress to a severely impaired stage, a “what if” plan should be in place well before deciding to begin the application process is made. If your healthcare provider anticipates that SS symptoms are likely to make it impossible for you to remain in the workforce, documenting is the right time. By tracking your worsening symptoms and recording their impact on increasing work-related challenges, your healthcare provider will be able to enter these events into your medical record. It also helps your healthcare provider recommend the appropriate testing and evaluations your disability application will need to supply. These evaluations might consist of a neuropsychological assessment to document changes in cognition or critical thinking that may be interfering with work performance or if you are over 50, a hearing assessment. Hearing loss alone in those under 50 is not considered a qualifying disability. Persons under 50 are determined to be young enough to learn alternative communication skills. All of this early documentation provides consistent evidence required to support a successful disability application.
This guideline is intended to make your application process easier. It contains the following:
- We will explain the role you will play in the application process, and your healthcare provider fills.
- The steps involved in the application process
- The disability criteria for SS, including reference numbers
- Worksheets to help you assemble your medical and work histories, track your symptoms’ impact on your work-related activities and log input from family, friends, supervisors, or employers.
- A Disability Evaluation Checklist helps your healthcare providers record the correct medical information and write an effective Medical Source Statement (MSS) in support of your application.
- Sample descriptions used in Medical Source Statements (MSS) from a physician, physician assistant, licensed optometrist, and a psychologist to accompany your medical record in support of your application
- Resources for assistance with the completion of your application
- Information about steps to take if your application is denied
- Additional resources
BENEFIT TYPES
Social Security Disability Insurance (SSDI) is the benefit available to individuals who have worked for a sufficient period and have contributed Social Security payroll taxes (FICA) )
Supplemental Security Income (SSI): is the benefit available to individuals who do not have enough work time or paid enough Social Security taxes to qualify for SSDI. Households must meet income and asset limits.
The same medical criteria will apply whether a person is applying for SSDI or SSI.
Updates to Qualifying Neurological Impairments
The Social Security Administration (SSA) finished a significant revision to the criteria for neurological disorder evaluations. These changes came from feedback and administration experiences over the past decade to provide a greater understanding of how the SSA evaluates neurological disorders.
Your key to a successful disability application is by linking your diagnosis, your symptoms, and specific associated challenges with keywords found in the numbered sections of the SSA regulations. Before an actual live decision-maker ever sees your application, it will first be run through a computer algorithm upon the SSA’s electronic receipt. This algorithm is designed to identify keywords found in applications that flag Compassionate Allowance Conditions (CAL) as extremely serious and time-sensitive.
This flag will send your application into the electronic system Quick Disability Determination (QDD), which screens applications for disability benefits or SSI filed online. QDD also scans for keywords and phrases that indicate a claim is highly likely to be approved, and it checks that the application includes all required documentation. These cases are marked for fast-tracking determination. Applications that are not filed electronically may also be reviewed by claims examiners, who can then flag them for fast-track status. Fast-track status means your application must receive a decision within 30 days.
- Include the exact number listed with each problem
- Word your description with the exact descriptive terms used in each listing.
The SSA decision-makers are not medical professionals. The easier you and your healthcare provider(s) make it for the reviewer to connect your particular symptom or impairment with a specific SSA regulation section, the easier it becomes for your reviewer to approve the application.
CAL Evaluation Listing
Compassionate Allowance Information
DI 23022.337 Superficial Siderosis of the Central Nervous System
SSA APPROVED ICD-9-CM | ICD-10-CM CODING
ICD-9: 331.0
ICD-10: J63.4
ALTERNATE NAMES
Superficial Siderosis of the CNS; Superficial Hemosiderosis of the CNS; Superficial Hemosiderosis of the Central Nervous System
DESCRIPTION
Superficial Siderosis of the Central Nervous System (CNS) is a progressive disease of the central nervous system caused by the accumulation of hemosiderin (iron salt) deposits on the brain surface, spinal cord, or cranial nerves.
The hard iron salt deposits are created from chronic bleeding into the subarachnoid space or brain surface underneath the three protective membranes. In most cases, the bleeding source is never located due to a considerable time delay before diagnosis. More than one bleed is required to cause superficial siderosis.
DIAGNOSTIC TESTING AND PHYSICAL FINDINGS
Diagnostic testing: An MRI of the head, spinal cord, or cranial nerves is needed to diagnose this disease. CT myelogram may assist with identifying leakage from a Dural defect.
Physical findings: Individuals with Superficial Siderosis of the CNS may have difficulty with:
- Hearing;
- Ability to smell and taste;
- Balance;
- Coordination and weakness of limbs;
- Difficulty with bladder and bowel functions;
- Eye movements;
- Early dementia;
- Bilateral sciatica;
- Pain in lower back and joints
Other less common side effects include:
- Transient ischemic accidents (TIA) or mini-strokes;
- Orthostatic headache;
- Cognitive difficulties;
- Loss of ability to hold one’s head up;
- Compression of gullet muscles.
PROGRESSION
Superficial Siderosis of the CNS progresses slowly over decades. This disease affects people of a wide range of ages, with men being diagnosed approximately three times more frequently than women. The number of reported superficial siderosis cases has increased with advances in MRI technology, but it remains a rare disorder.
TREATMENT
Treatment varies based on the underlying cause and severity of the condition and may include surgery and medications. If identified early in the diagnosis, ablating or plugging the bleeding source may help restrict further complications. The bleeds may be attributed to complications in the spine, such as tumors or other similar problems.
Some other medication forms, such as iron chelators, have been tried but have not proven beneficial.
Some individuals may be at risk of developing dementia and are treated with folic acid in tablet form, vitamin B, daily tablet form, or a monthly injection.
To lessen the chance of a return of TIA’s or strokes, various forms of medication are prescribed, such as blood thinners and the traditional half of an aspirin a day.
For those experiencing permanent headaches, anti-depressants in mild doses are found to provide long-term relief, along with common medication such as Panadol.
(SSA Program Operations Manual System (POMS))
SSA SUGGESTED PROGRAMMATIC ASSESSMENT*
Suggested MER for Evaluation
- Clinical history and examination that describes the diagnostic features of the impairment.
- Results of MRI/CT scan of the brain surface, spinal cord, or cranial nerves.
SSA Listing for Evaluation
DETERMINATION LISTING REMARKS
PRIMARY
Meets 11.17 under 11.00 NEUROLOGICAL – ADULT
11.17 Neurodegenerative disorders of the central nervous system (List: Superficial Siderosis of the Central Nervous System) characterized by A or B:
OR
B. Marked limitation (see 11.00G2) in physical functioning (see 11.00G3a), and in one of the following:
Understanding, remembering, or applying information (see 11.00G3b(i)); or
Interacting with others (see 11.00G3b(ii)); or
Concentrating, persisting, or maintaining pace (see 11.00G3b(iii)); or
Adapting or managing oneself (see 11.00G3b(iv)).
NOTE: Adjudicators may, at their discretion, use the Medical Evidence of Record or the listings suggested to evaluate the claim. However, the decision to allow or deny the claim rests with the adjudicator.
SECONDARY
MEETS 2.00 – SPECIAL SENSES AND SPEECH, ADULT
Which includes the abnormalities of the eye, optic nerve, or optic tracts that can occur in SS
MEETS 12.00 – MENTAL DISORDERS
Which includes mood and cognitive disorders that can occur in SS as well as in other medical or psychiatric conditions
By now, you should realize how important documenting each symptom, progression timeline, and negative work-experience impact is to make a successful application. Each of these sections of SSA regulations has numerous subsections with precise criteria. If you have been diagnosed with SS and you do not meet the standards for disability under one specific section, you may still qualify under one of the other two sections. Remember, you only have to meet the criteria of one section. Refer to Appendix-SS for a detailed summary of the superficial siderosis code sections.
Getting Started Planning
Social Security Disability Insurance (SSDI) is a monthly cash benefit payment available to persons who have a good work history and paid enough social security tax into the system to be qualified as insured against disability. Once you are determined to have attained insured status, your disability claim will only be approved if the SSA determines:
- You suffer from a disease, disorder, or injury that is severe enough to prevent you from working an Eight hour work day for five days a week.
- Your severe disability has lasted or is expected to last more than 12 months or result in death.
Substantial Gainful Activity (SGA)
This is the very first criteria the SSA reviews on all applications. No matter how disabled you are, how many doctors agree, no matter if you have terminal cancer- IF YOU ARE STILL WORKING MORE THAN A BARE MINIMUM WHEN YOU APPLY, YOU WILL BE DENIED. End of story and no excuses. They do not want to hear how you plan to stop working full-time once you are approved. Social Security uses an SGA payment level to determine what is too much work. In 2021, SGA is defined as earning $1,310 or more a month from working or $2,190 for a person who is legally blind. The SSA does not consider income from non-employment resources such as interest, investments, pensions, or private disability payments as gainful activity.
If you are currently employed full-time but have entered the planning stage for your disability application, now is the time to discuss with your employer. As your symptoms progress, they may be agreeable to reducing your workload and hours. This provides you with some income while showing you tried to work as long as you could before being forced to stop. Your employer will be able to give you a letter to send with your application stating your duties and hours were adjusted for your health issues as much as they were able.
Useful Tools
The SSA Disability Planner (ssa.gov/planners/disability)
It is a tool to explain which benefits are available to you, how to apply, and how to qualify. It also outlines what happens once you are approved or denied.
The SSA Benefit Eligibility Screening Tool (ssabest.benefits.gov)
A tool to determine which programs you may qualify for based on a series of questions.
Healthcare Provider Planning
You may have discussed with your healthcare provider several years earlier about your progression. Most SS patients are still in reasonably good shape when they begin medical care. It helps with your what-if plan to have a conversation early on about honesty concerning your progression. When your provider begins to express doubts about your continued ability to maintain full-time employment, it may be time to begin the disability conversation in earnest. The better you and your physician understand the application process, the greater chance of early success.
The SSA requires detailed medical records from every Treating Source. Acceptable treatment sources are:
- Licensed physicians
- Licensed or Certified Psychologists
- Licensed Optometrists
- Licensed or Qualified Speech-language Pathologists
- Physician Assistants
- Advance Practice Registered Nurse
Registered nurses, licensed vocational nurses, chiropractors, therapists, clinical social workers may add a written support statement, but these statements will not be considered medical records from treating sources. The provider who has overseen your case the longest and one who submits the most detailed information will be in the best position to provide your application with supporting solid medical evidence.
Information Gathering
It is now time for you to begin collecting your evidence. Creating a digital file is a suitable method for converting hard copies into a format you will upload if you choose to file your application online. Be sure to make a hard copy file too. You need to keep your worksheets and letters from your family, friends, and employer in one place.
You will find Worksheets to Assist You with Your SSD Application in the appendix-ws. These four worksheets are designed to help you organize the information you will need to share with your healthcare providers and your SSA interview. Share copies of these worksheets with others as needed but always keep the originals for yourself.
Worksheet One: Applicant Medical History
This worksheet will help you gather the medical information you need to complete your SSDI application.
Worksheet Two: How SS Impacts Your Functioning and Ability to Work
This worksheet will help you describe your SS symptoms and how they impact your functioning on the job.
Worksheet Three: Applicant Work History
This worksheet will help you gather the work, personal, and income history you need to complete your SSDI application.
Worksheet Four: Supporting Information from Family, Friends, Colleagues
This worksheet will help you gather helpful information from people who know you about how your SS or other conditions have impacted your ability to function.
Healthcare Provider Evidence
Your physicians’ role is to provide adequate medical evidence to SSA to support your application. It is not enough for a provider to state you are disabled or believe you meet the listing criteria.
A provider must:
- Provide copies of all related records and include a detailed report with clinical findings supporting your diagnosis and the impact of your SS symptoms on your inability to continue working.
- Your medical records and all supporting information must show that your limitations have already lasted or are expected to last for a continuous period of at least 12 months. This does not mean that your symptoms cannot be better on some days than on others or that your ability to function at work cannot vary from day to day. It means your symptoms are progressive, are permanent, and prevent you from continued full-time employment.
- Provide a Medical Source Statement (MSS) outlining their medical opinion concerning any limitations your symptoms impose on your ability to work or perform major life activities. The statement should refer to each specific criteria in the SSA listing (with an assigned number) with a description of the corresponding limitation, the effect on your daily activities, and how it impacts your ability to do work eight hours a day, five days a week. If SSA cannot get enough information from your healthcare provider(s) MSS statements, it might require you to undergo an additional physical or mental exam, known as consultative examination (CE).
- Describe your current medical history, including SS, other severe health conditions, and your symptoms (including depression, anxiety, cognitive difficulties, and side effects of medications) that prevent you from working.
Submit Your Application
- Online
- Over the Phone
- In-Person
Submitting your application online takes the most effort, but it has significant advantages. You control the information and, more importantly, the exact wording entered in your application rather than have an SSA claims representative interpret what you say in an interview and enter your information in their own words. You can take your time filling out the forms, saving information, taking a break, and returning when you are ready. CAL designations for online applications are entirely automated. Your SSA-3368 (Disability Report—Adult) must be filled out correctly to reflect this is a CAL listed disorder, and you must upload a signed SSA-827 (Authorization to Disclose Information to the Social Security Administration (SSA).
If you choose to apply in person or on the phone, call the SSA first to schedule an appointment. This will help reduce your wait at your local SSA field office. There may be a significant wait time to get an appointment. One advantage of an in-person interview is getting to know the person who will submit your application. However, be sure to write out notes to help you share all the details of your circumstances. Remember that any invisible symptoms you have will not be apparent to an SSA claims representative during an in-person meeting, so you will need to describe them fully. If your physician has prescribed any assistive devices, be sure to use them at the meeting.
Prepare For a successful interview
- Make copies of everything you will submit to SSA and order them in your folder. Remember to keep your originals and only submit copies.
- Write down the main points you want to share at the beginning of your interview. Keep these points brief (try not to ramble). The main points should include:
- I have a (or several) severe disabilities due to superficial siderosis
- Due to these disabilities, I am unable to work
- Superficial siderosis is a neurodegenerative disorder listed on the Compassionate Allowance List
- My severe disability is covered in Sections A and Z of the summary of the SSA Listing of Impairments (referring to the specific section titles and numbers listed)
- May I have your direct number and extension information (SSA representative) to follow up on my case later
You will need to bring:
- Birth certificate or other proof of birth; Original
- Proof of US citizenship or lawful alien status if you were not born in the United States;
- US military discharge paper(s) if you had military service before 1968;
- W-2 forms(s) and/or self-employment tax returns for last year;
- Last employer contact information
- Last work schedule including daily and weekly hours
- Testimonials from work colleagues, supervisors, or employer
- If you worked until your medical conditions caused frequent absences or poor performance, provide documentation
- If you were fired, needed extra help at work were asked to leave, or were encouraged by your employer to apply for disability benefits, provide documentation
- If you have had inadequate job evaluations because of problems with thinking or memory or any other issue related to your SS symptoms, enclose copies of those evaluations with your application
- A completed SSA-3368 (Disability Report—Adult)
- Notes for use during your interview, including a medical and work timeline
- Medical evidence in your possession
- Treatments and dates
- All related medical tests and scans with dates and findings (reports)
- Current prescriptions and dosing schedule
- Copies of all medical records
- Copies of your healthcare providers’ MSS statements (They retain the originals)
- Current contact information of all healthcare providers
- Family and friends’ testimonials
During your interview
Now is the time for you to explain your circumstances fully. Use your notes and timelines to lay out your story in the order events happened. Carefully describe your physical or mental disabilities during your interview. Talk specifically about any problems you have with mobility, balance, fine motor skills, fatigue, vision, bladder function, speech, hearing, mood, thinking, and memory. It is helpful to use words like occasional, frequent, always, intermittent, nightly, daily, mild, and severe to express the scope of your symptoms. Give details describing how your physical or mental SS symptoms or other conditions prevent you from working an eight-hour day, five days a week.
Make sure your SSA representative understands superficial siderosis is on the Compassionate Allowance List before they finish inputting your application. When transferring a case into the Electronic Disability Collect System (EDCS), selection software should automatically determine whether the case qualifies for Compassionate Allowances (CAL) fast-track processing; and the Predictive Model (PM) identifies cases for Quick Disability Determinations (QDD) fast-track processing. When the field office (FO) selects a case, an onscreen message prompts them to complete full non-medical development. The FO must select OK to close the message box to proceed with the transfer.
The CAL initiative is designed to quickly identify diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal but sufficient, objective medical information. All CAL identified conditions should be entered into a Predictive Model (PM) and are selected for CAL processing based solely on the claimant’s claims listed on the SSA-3368 (Disability Report—Adult). CAL cases receive expedited processing within the context of the existing disability determination process.
- The PM identifies most CAL cases upon Electronic Disability Collect System (EDCS) transfer to your States Disability Determination Services (DDS) at the initial claim adjudicative level.
- CAL cases are processed in the DDS by adjudicators who meet the training qualifications outlined in DI 23022.020
- Expedited processing applies to all CAL-identified cases.
- Cases determined to be CAL may also meet the criteria for Quick Disability Determinations (QDD) and designated both QDD and CAL. For example, the case could meet the scoring criteria (all required documentation submitted with application) for QDD and a CAL condition.
Even though superficial siderosis is on the CAL list, your impairment from symptoms must still meet the required degree of disability, or you may receive a denial. If a CAL case is denied, it retains priority status at all adjudication levels, but a superficial siderosis diagnosis does not guarantee automatic approval.
When your interview is over, and the SSA representative has filed your application. Ask for a copy of your submitted application along with a printout of your yearly wage history.
After your application
Keep records of all communication between the SSA and yourself. Answer all inquiries as soon as possible. If they request additional information, you need to provide this information as quickly as possible. If missing information delays a determination longer than 30 days, your case may lose its QDD status.
Suppose the adjudicator feels your medical records or the Medical Source Statement(s) (MSS) provided by your healthcare provider(s) are not sufficient to determine whether you meet the required degree of disability. In that case, you might receive a notice asking for at least one additional consultative examination (CE). You have the right to call your case examiner and find out why they feel there is insufficient information.
If you are denied
Professionals (paid or unpaid) are called SSDI claimant representatives. Representatives are usually disability attorneys, but they do not always have to be. You can find a representative by:
- Contacting the National Organization for Social Security Claimants Representatives at nosscr.org or by calling 1-800-431-2804
- Your local SSA field office will also have a list of representatives. Be sure to ask for a complete written explanation of fees and rates before agreeing to meetings or signing any documents.
For more information about representatives and fees: visit: ssa.gov/pubs/EN-05-10075.pdf or ssa.gov/planners/thirdparty.html
You have the right to appeal if your application is denied or not satisfied with the determination. Keep all notices mailed to you by SSA and Disability Determination Services (DDS). You will only have 60 days after you receive the notice of SSA’s decision to appeal. Remember, your CAL application ensures your appeal has priority status, so take care not to let it lapse by inaction.
When you are approved
You will receive a notice of approval by mail. This letter will state when you can expect to begin receiving benefits. Be aware there is a mandatory five-month waiting period before your benefits will begin on the designated day of the sixth month. You are also entitled to Medicare. However, your Medicare coverage will not begin until two years after your SSDI benefits begin (a full 29 months after you stop working). To learn more about Medicare coverage for people living with disabilities, go to socialsecurity.gov/pubs/10043.html.
If you need assistance filing your application
There are several ways a friend, family member, or other representative can help you apply for and manage your disability benefits. They can assist with part of the application process, such as gathering and organizing all the necessary work and medical records into a folder or keeping a journal. They can accompany you on visits to your doctor(s) and SSA, sit beside you and help answer any tough questions. They also can help fill out the worksheets in this guideline.
If you cannot manage any part of the application process yourself, or if you want or need someone to act on your behalf or in your absence with SSA, you can appoint an Authorized Representative. An attorney, or non-attorney representative specializing in Social Security, friend, or family member can serve as your Authorized Representative. That person must develop a telephone relationship with your healthcare provider(s) and become familiar with all the documentation required to submit a successful application. Both you and the person representing you must complete and sign Form SSA-1696 (Appointment of Representative). You can download and complete this form at socialsecurity.gov/representation.
If you want a representative but do not know how to find one, ask your local SSA field office. Some representatives charge fees. Others do not. To understand how representatives can charge fees and how SSA approves fees, refer to ssa.gov/pubs/EN-05-10075.pdf.
Note: SSA does not recognize power of attorney.
Appendix-SS
SUMMARY OF SUPERFICIAL SIDEROSIS RELATED SSA LISTING OF IMPAIRMENTS
MAIN SSA LISTING: 11.17 NEURODEGENERATIVE DISORDERS OF THE CENTRAL NERVOUS SYSTEM (OFFICIAL DISORDER: SUPERFICIAL SIDEROSIS OF THE CENTRAL NERVOUS SYSTEM)
- When determining a person’s ability to stand up, balance, walk or perform fine and gross motor movements (11.00D), SSA evaluates signs and symptoms such as flaccidity, spasticity, spasms, incoordination, imbalance, tremor, physical fatigue, muscle weakness, dizziness, tingling, and numbness.
- When determining whether a person with SS has limitations of physical and mental functioning (11.00G), SSA evaluates impairments or signs and symptoms that develop as a result of SS, such as fatigue, visual loss (which may be evaluated under 2.0), pain, trouble sleeping, impaired attention, concentration, memory or judgment, mood swings, and depression. Physical functioning may also include functions of the body that support motor abilities, such as breathing and swallowing. Note regarding Fatigue: SSA recognizes that fatigue is “one of the most common and limiting symptoms of neurological disorders. This fatigue can be physical (lack of muscle strength) or mental (decreased awareness or attention). When SSA evaluates a person’s fatigue, they consider the intensity, persistence, and effects of fatigue on their functioning. Specifically, SSA wants a description of fatigue characteristics of SS and a detailed description of how fatigue impacts the person’s physical or mental functioning.
- Note regarding Visual Impairment: if a person has a visual impairment that SS causes, the visual impairment may be evaluated under Special Senses and Speech – Adult (2.0). The visual disorders covered in this section of regulations include the abnormalities of the eye, optic nerve, or optic tracts that can occur in SS, resulting in loss of visual acuity (2.02), reduction of the visual field (2.03), or loss of visual efficiency (2.04).
- Suppose a person with SS does not satisfy the requirements outlined in 11.17. In that case, she or he can also be considered for cognitive impairment under 12.02 (neurocognitive impairments that result from neurological disorders) or depressive, bipolar, and related disorders (12.04), or anxiety and obsessive-compulsive disorders (12.06) resulting from her or his SS. Therefore, a person with significant cognitive impairment or mood disturbance but mild or no physical impairments may qualify for SSD under 12.00.
- 12.02 Neurocognitive Disorders — includes disorders characterized by a clinically significant decline in cognitive functioning. Symptoms and signs may include but are not limited to: disturbances in memory, executive functioning (e.g., regulating attention, planning, inhibiting responses, decision-making), visual-spatial functioning, language and speech, perception, insight, judgment, and insensitivity social standards.
- a. Medical criteria must be present in the medical evidence — all relevant medical evidence from the person’s physician, psychologist, and other medical sources such as
physician assistant, psychiatric nurse practitioners, licensed clinical social workers, and clinical mental health counselors. Evidence may include: reported symptoms; medical,
psychiatric, and psychological history; results of physical or mental status exams, structured clinical interviews, psychiatric or psychological rating scales, measures of adaptive functioning, or other clinical findings; psychological testing, imaging results, or other laboratory findings; the diagnosis; the type, dosage and beneficial effects of
medications that are being taken; the type, frequency, duration, and beneficial effects of therapy that is being received; side effects of treatment that may impact function; observations of the person’ functioning during examinations or therapy; Information about sensory, motor, or speech abnormalities or about the cultural background that may affect the evaluation of the mental disorder; the expected duration of the symptoms and signs of the disorder
- For 12.02 Neurocognitive Disorder, the medical documentation must show a significant decline from a prior level of function in one or more the following areas: complex attention, executive function, learning, and memory, language, perceptual-motor skills or social cognition AND Extreme limitation of one OR marked limitation of two of the
following areas of functioning: understanding, remembering or applying information, interacting with others, concentrating, persisting or maintaining pace OR Medically-documented history of a severe and persistent disorder over at least two years, which is being treated with at least some benefit, but still leaves the person
with minimal capacity to function in the work setting.
SSA also considers that a person may be able to perform a function sometimes and not others. The limitation in a person’s functioning must last or be expected to last at least 12 months.
Appendix-PS
DISABILITY EVALUATION CHECKLIST FOR PROVIDERS
This checklist will assist you to:
- Plan a practical disability application with your patient
- Outline the key points to be covered in the Medical Source Statement (MSS) that SSA requires you to submit along with the medical/psychological evidence in support of your patients’ application.
The numbers in parentheses refer to specific sections in the SSA criteria for evaluating disability. Comprehensive evidence from you will increase your patient’s chances of receiving benefits, so use this checklist to ensure complete documentation of all medical/psychological evidence about your patient’s condition(s), and reference of the relevant
sections of the SSA Listing Regulation.
As described in Appendix-SS of the Guideline, the common physical, cognitive and emotional symptoms of SS that can interfere with an adult’s ability to function at work or in school are covered in three separate sections of the Listing:
11.00— NEUROLOGICAL – ADULT
The SSA evaluates neurological disorders such as superficial siderosis that may manifest in a combination of limitations in physical and mental functioning.
11.17 — NEURODEGENERATIVE DISORDERS OF THE CENTRAL NERVOUS SYSTEM (OFFICIAL DISORDER: SUPERFICIAL SIDEROSIS OF THE CENTRAL NERVOUS SYSTEM)
A. Disorganization of motor function in two extremities (see 11.00D1), resulting in an extreme limitation (see 11.00D2) in the ability to stand up from a seated position, balance while standing or walking, or use the upper extremities.
OR
B. Marked limitation (see 11.00G2) in physical functioning (see 11.00G3a), and in one of the following:
Understanding, remembering, or applying information (see 11.00G3b(i)); or
Interacting with others (see 11.00G3b(ii)); or
Concentrating, persisting, or maintaining pace (see 11.00G3b(iii)); or
Adapting or managing oneself (see 11.00G3b(iv)).
2.00 — SPECIAL SENSES AND SPEECH, which includes the abnormalities of the eye, optic nerve, or optic tracts that can occur in ss.
12.00 — Mental Disorders, which includes mood and cognitive disorders that can occur in SS as well as in other medical or psychiatric conditions If a person with SS does not meet the criteria for disability due to physical impairments, it is still possible to qualify for disability due to cognitive or mood problems under 12.00. Even if you believe that your patient meets the criteria for disability under 11.00 based solely on impairments in physical functioning, it is recommended that you include information in this evaluation.
My patient, Ms. X, has Disorganization of motor function in both legs (11.00D1), which has resulted in an extreme limitation (11.00D2) in her ability to stand up from a seated position without assistance and balance safely while standing, requiring her to use a wheeled walker for mobility. Her lower limbs are weak and spastic [scores], with significant foot drop on the right side, for which she wears an orthotic
to reduce the risk of falls. As a result, Ms. X cannot navigate safely to and from her place of work
and is unable to carry out her work activities for more than 1 hour before becoming too fatigued to continue. As is common in SS, Ms. X’s fatigue, both physical and mental, comes on suddenly and is all-consuming, requiring a one-to-two-hour period of rest or sleep before she can resume any physical or mental activity.
My patient, Mr. Y, has Disorganization of motor function (11.00D1), resulting in a marked limitation (11.00G2) in physical functioning caused by incoordination, impaired balance, and significant intention tremor in his right hand/arm. He has significantly decreased visual acuity (2.02) due to optic neuritis
and a reduction in the visual field (2.03) [scores]. Because of these impairments, Mr. Y cannot travel safely to and from work, maneuver safely within the workplace, carry out the job’s manual functions on a sustained basis or see adequately to complete tasks. Mr. Y has also experienced a marked decline in cognitive functioning (12.02) [test scores showing decline], principally in the areas of information processing speed, memory, and perceptual-motor skills. Because of these deficits, Mr. Y has extreme difficulty remembering and applying the information he has heard, keeping up with conversations in the workplace, and completing his tasks in a timely way.
MSS STATEMENT: SAMPLE THREE
My patient, Ms. Z, has a moderate gait impairment resulting from spasticity and weakness (11.00G2) [scores] and bladder symptoms of urgency and frequency that she manages with partial success with anticholinergic medication. However, these symptoms make it difficult for her to navigate to and
from the bathroom quickly and safely. Ms. Z’s cognitive function (12.02) has decreased markedly over the past two years [scores]. She has lost essential executive functions and is no longer able to organize her work activities, plan and prioritize her tasks, make sound decisions or use good judgment in her
work activities and interpersonal interactions.
SSA TERMS
Disorganization of function: The neurologic condition interferes with the movement in at least two extremities
Extreme limitation: Inability, without assistance from another person or an assistive device, to stand from a seated position, maintain and complete work-related activities involving fine
motor movements and gross motor movements.
Marked limitation: To satisfy the requirements, the person’s SS must result in a significant limitation in physical functioning and a significant limitation in one of the four areas of mental functioning.
Physical functioning: The person is seriously limited in independently initiating, sustaining, and completing work-related activities because of persistent and intermittent physical symptoms.
Mental functioning: the person is seriously limited in the ability to function independently, appropriately, effectively, and on an ongoing basis in work settings because of mood and or
cognitive symptoms.
Worksheets (included in the .pdf download)
Acute Leukemia
Adrenal Cancer – with distant metastases or inoperable, unresectable or recurrent
Adult Non-Hodgkin Lymphoma
Adult Onset Huntington Disease
Aicardi-Goutieres Syndrome
Alexander Disease (ALX) – Neonatal and Infantile
Allan-Herndon-Dudley Syndrome
Alobar Holoprosencephaly
Alpers Disease
Alpha Mannosidosis – Type II and III
ALS/Parkinsonism Dementia Complex
Alstrom Syndrome
Alveolar Soft Part Sarcoma
Amegakaryocytic Thrombocytopenia
Amyotrophic Lateral Sclerosis (ALS)
Anaplastic Adrenal Cancer – Adult with distant metastases or inoperable, unresectable or recurrent
Angelman Syndrome
Angiosarcoma
Aortic Atresia
Aplastic Anemia
Astrocytoma – Grade III and IV
Ataxia Telangiectasia
Atypical Teratoid/Rhabdoid Tumor
Batten Disease
Beta Thalassemia Major
Bilateral Optic Atrophy- Infantile
Bilateral Retinoblastoma
Bladder Cancer – with distant metastases or inoperable or unresectable
Breast Cancer – with distant metastases or inoperable or unresectable
Canavan Disease (CD)
CACH–Vanishing White Matter Disease-Infantile and Childhood Onset Forms
Carcinoma of Unknown Primary Site
Cardiac Amyloidosis- AL Type
Caudal Regression Syndrome – Types III and IV
CDKL5 Deficiency Disorder
Cerebro Oculo Facio Skeletal (COFS) Syndrome
Cerebrotendinous Xanthomatosis
Charlevoix-Saguenay Spastic Ataxia (New)
Child Lymphoma
Child Neuroblastoma – with distant metastases or recurrent
Chondrosarcoma – with multimodal therapy
Choroid Plexus Carcinoma (New)
Chronic Idiopathic Intestinal Pseudo Obstruction
Chronic Myelogenous Leukemia (CML) – Blast Phase
Coffin-Lowry Syndrome
Congenital Lymphedema
Congenital Zika Syndrome (New)
Cornelia de Lange Syndrome – Classic Form
Corticobasal Degeneration
Creutzfeldt-Jakob Disease (CJD) – Adult
Cri du Chat Syndrome
Degos Disease – Systemic
DeSanctis Cacchione Syndrome
Desmoplastic Mesothelioma (New)
Desmoplastic Small Round Cell Tumors
Dravet Syndrome
Duchenne Muscular Dystrophy- Adult (New)
Early-Onset Alzheimer’s Disease
Edwards Syndrome (Trisomy 18)
Eisenmenger Syndrome
Endometrial Stromal Sarcoma
Endomyocardial Fibrosis
Ependymoblastoma (Child Brain Cancer)
Erdheim Chester Disease
Esophageal Cancer
Esthesioneuroblastoma
Ewing Sarcoma
Farber Disease (FD) – Infantile
Fatal Familial Insomnia
Fibrodysplasia Ossificans Progressiva
Fibrolamellar Cancer
Follicular Dendritic Cell Sarcoma – metastatic or recurrent
Friedreichs Ataxia (FRDA)
Frontotemporal Dementia (FTD), Picks Disease -Type A – Adult
Fryns Syndrome
Fucosidosis – Type 1
Fukuyama Congenital Muscular Dystrophy
Fulminant Giant Cell Myocarditis
Galactosialidosis – Early and Late Infantile Types
Gallbladder Cancer
Gaucher Disease (GD) – Type 2
Giant Axonal Neuropathy
Glioblastoma Multiforme (Brain Cancer)
Glioma Grade III and IV
Glutaric Acidemia – Type II
GM1 Gangliosidosis – Infantile and Juvenile Forms
Head and Neck Cancers – with distant metastasis or inoperable or unresectable
Heart Transplant Graft Failure
Heart Transplant Wait List – 1A/1B
Hemophagocytic Lymphohistiocytosis (HLH) – Familial Type
Hepatoblastoma
Hepatopulmonary Syndrome
Hepatorenal Syndrome
Histiocytosis Syndromes
Hoyeaal-Hreidarsson Syndrome
Hutchinson-Gilford Progeria Syndrome
Hydranencephaly
Hypocomplementemic Urticarial Vasculitis Syndrome
Hypophosphatasia Perinatal (Lethal) and Infantile Onset Types
Hypoplastic Left Heart Syndrome
I Cell Disease
Idiopathic Pulmonary FibrosisInfantile Free Sialic Acid Storage Disease
Infantile Neuroaxonal Dystrophy (INAD)
Infantile Neuronal Ceroid Lipofuscinoses
Inflammatory Breast Cancer (IBC)
Intracranial Hemangiopericytoma
Jervell and Lange-Nielsen Syndrome
Joubert Syndrome
Junctional Epidermolysis Bullosa – Lethal Type
Juvenile Onset Huntington Disease
Kidney Cancer – inoperable or unresectable
Kleefstra Syndrome
Krabbe Disease (KD) – Infantile
Kufs Disease – Type A and B
Large Intestine Cancer – with distant metastasis or inoperable, unresectable or recurrent>
Late Infantile Neuronal Ceroid Lipofuscinoses
Leigh’s Disease
Leiomyosarcoma
Leptomeningeal Carcinomatosis
Lesch-Nyhan Syndrome (LNS)
Lewy Body Dementia
Liposarcoma – metastatic or recurrent
Lissencephaly
Liver Cancer
Lowe Syndrome
Lymphomatoid Granulomatosis – Grade III
Malignant Brain Stem Gliomas – Childhood
Malignant Ectomesenchymoma
Malignant Gastrointestinal Stromal Tumor
Malignant Germ Cell Tumor
Malignant Multiple Sclerosis
Malignant Renal Rhabdoid Tumor
Mantle Cell Lymphoma (MCL)
Maple Syrup Urine Disease
Marshall-Smith Syndrome
Mastocytosis – Type IV
MECP2 Duplication Syndrome
Medulloblastoma – with metastases
Megacystis Microcolon Intestinal Hypoperistalsis Syndrome
Megalencephaly Capillary Malformation Syndrome
Menkes Disease – Classic or Infantile Onset Form
Merkel Cell Carcinoma – with metastases
Merosin Deficient Congenital Muscular Dystrophy
Metachromatic Leukodystrophy (MLD) – Late Infantile
Mitral Valve Atresia
Mixed Dementias
MPS I, formerly known as Hurler Syndrome
MPS II, formerly known as Hunter Syndrome
MPS III, formerly known as Sanfilippo Syndrome
Mucosal Malignant Melanoma
Multicentric Castleman Disease
Multiple System Atrophy
Myoclonic Epilepsy with Ragged Red Fibers Syndrome
Neonatal Adrenoleukodystrophy
Nephrogenic Systemic Fibrosis
Neurodegeneration with Brain Iron Accumulation – Types 1 and 2
NFU-1 Mitochondrial Disease
Nicolaides-Baraister Syndrome
Niemann-Pick Disease (NPD) – Type A
Niemann-Pick Disease-Type C
Nonketotic Hyperglycinemia
Non-Small Cell Lung Cancer
Obliterative Bronchiolitis
Ohtahara Syndrome
Oligodendroglioma Brain Cancer- Grade III
Ornithine Transcarbamylase (OTC) Deficiency
Orthochromatic Leukodystrophy with Pigmented Glia
Osteogenesis Imperfecta (OI) – Type II
Osteosarcoma, formerly known as Bone Cancer – with distant metastases or inoperable or unresectable
Ovarian Cancer – with distant metastases or inoperable or unresectable
Pallister-Killian Syndrome
Pancreatic Cancer
Paraneoplastic Pemphigus
Patau Syndrome (Trisomy 13)
Pearson Syndrome
Pelizaeus-Merzbacher Disease-Classic Form
Pelizaeus-Merzbacher Disease-Connatal Form
Pericardial Mesothelioma (New)
Peripheral Nerve Cancer – metastatic or recurrent
Peritoneal Mesothelioma
Peritoneal Mucinous Carcinomatosis
Perry Syndrome
Phelan-McDermid Syndrome
Pitt Hopkins Syndrome
Pleural Mesothelioma
Pompe Disease – Infantile
Primary Central Nervous System Lymphoma
Primary Effusion Lymphoma
Primary Peritoneal Cancer
Primary Progressive Aphasia
Progressive Bulbar Palsy
Progressive Multifocal Leukoencephalopathy
Progressive Supranuclear Palsy
Prostate Cancer – Hormone Refractory Disease – or with visceral metastases
Pulmonary Atresia
Pulmonary Kaposi Sarcoma
Refractory Hodgkin Lymphoma (New)
Renpenning Syndrome (New)
Retinopathy of Prematurity – Stage V
Rett (RTT) Syndrome
Revesz Syndrome
Rhabdomyosarcoma
Rhizomelic Chondrodysplasia Punctata
Richter Syndrome
Roberts Syndrome
Rubinstein-Taybi Syndrome
Salivary Cancers
Sandhoff Disease
Schindler Disease – Type 1SCN8A Related Epilepsy with Encephalopathy (New)
Seckel Syndrome
Secondary Adenocarcinoma of the Brain
Severe Combined Immunodeficiency – Childhood
Single VentricleSinonasal Cancer
Sjogren-Larsson Syndrome
Skin Malignant Melanoma with Metastases
Small Cell Cancer (Large Intestine, Prostate or Thymus)
Small Cell Cancer of the Female Genital Tract
Small Cell Lung Cancer
Small Intestine Cancer – with distant metastases or inoperable, unresectable or recurrent
Smith Lemli Opitz Syndrome
Soft Tissue Sarcoma – with distant metastases or recurrent
Spinal Muscular Atrophy (SMA) – Types 0 and 1
Spinal Nerve Root Cancer-metastatic or recurrent
Spinocerebellar Ataxia
Stiff Person Syndrome
Stomach Cancer – with distant metastases or inoperable, unresectable or recurrent
Subacute Sclerosing Panencephalitis
Superficial Siderosis of the Central Nervous System
SYNGAP1-related NSID (New)
Tabes Dorsalis
Tay Sachs Disease – Infantile TypeTaybi-Linder Syndrome (New)
Tetrasomy 18p
Thanatophoric Dysplasia – Type 1
Thyroid Cancer
Transplant Coronary Artery Vasculopathy
Tricuspid Atresia
Ullrich Congenital Muscular Dystrophy
Ureter Cancer – with distant metastases or inoperable, unresectable or recurrent
Usher Syndrome – Type I
Ventricular Assist Device Recipient – Left, Right, or Biventricular
Walker Warburg Syndrome
Wolf-Hirschhorn Syndrome
Wolman Disease
X-Linked Lymphoproliferative Disease