Discussion in 'Fibromyalgia Main Forum' started by suzetal, Sep 27, 2006.

  1. suzetal

    suzetal New Member

    Thought I would share this.I hope it helps some.


    Available for download:
    The Provider Workbook on CFS Disability
    Workbook includes disability information and assessment tools in one convenient PDF.


    Assessment Tools
    Social Security Ruling 96-8p and SSA Forms 4734-U8 and 4734-F4-SUP provide information on functional impairment.

    There are a few brief screening instruments that can help monitor a patient’s functional status and eligibility for disability benefits. Although not scientifically validated, these tools were designed for by practitioners for ease of use in the clinical setting to help document status from visit to visit.

    Bell’s Disability Scale provides a numerical representation of an individual’s severity of symptoms, degree of activity impairment and ability to function in full-time work ( Bell, 1995). The Subjective Functional Capacity Assessment (Lapp, 1993) is a helpful measure of the functional impact of fatigue.

    The Visual Analog Pain Scale is a widely accepted and used tool, as are verbal rating scales and the Wong-Baker FACES Pain Rating Scale (Hockenberry et al, 2005). The CDC Symptom Inventory (Wagner et al, 2005) and SF-36 (Ware and Sherbourne, 1992) are more comprehensive and scientifically validated instruments that may be considered more appropriate by providers who need a broader, more inclusive assessment and documentation.

    The Multidimensional Fatigue Inventory (MFI) is a 20-question survey that assesses the physical, psychosocial and cognitive impact of fatigue on perceived quality of life over the prior month (Smets et al, 1995).

    Social Security Benefits
    The Social Security Act definition of “disability” poses three medical questions:

    Is there a medically determinable impairment (or combination of impairments)?
    Does it significantly limit the person’s physical and/or mental ability to perform substantial gainful work?
    Is it expected to last a continuous period of at least 12 months (including any past period of incapacity) or result in death?

    The Social Security Administration (SSA) has issued policy guidance for CFS claims. Social Security Ruling 99-2p states that CFS can be a disabling condition and people who meet SSA’s criteria for disability are eligible for benefits (Social Security Administration, 1999).

    Reports to SSA must include a description of the person’s functional status and highlight any clinical findings. SSR 99-2p outlines the criteria by which CFS can be defined as a medically determinable impairment.

    Examples include: neurocognitive impairment documented by mental status examination or psychological testing; anxiety or depression; persistent, reproducible muscle tenderness, including positive tender points; an abnormal exercise stress test; abnormal sleep studies; elevated antibodies to Epstein-Barr virus (EBV); an abnormal magnetic resonance imaging brain scan; swollen or tender lymph nodes; nonexudative pharyngitis; neurally mediated hypotension; or any other medical signs or laboratory findings that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record.

    Once a medically determinable impairment is documented, patients still must prove that they are functionally impaired to the degree that they are unable to work at any job available in the local economy.

    SSA requires that benefits are awarded to people whose conditions meet or equal the criteria for any of the disabilities that SSA includes in its official Listing of Impairments (Social Security Administration, 2003). CFS is not a “listed” condition. However, CFS patients have also been awarded SSA benefits because their symptoms meet criteria for other listed conditions, even though properly documented and disabling CFS can meet criteria on its own.

    Long-Term Disability Benefits
    Many people with CFS are also eligible for long-term disability (LTD) insurance benefits through an employer-provided or individual policy. It is crucial for the health care provider to discriminate between disability caused by a patient’s CFS symptoms and primary mental health conditions, particularly if the patient has access to LTD benefits.

    Since LTD policies typically limit benefits to 24 months for people disabled by mental health conditions, it is possible that benefits will be prematurely terminated for people disabled by CFS who have: 1) been incorrectly diagnosed with a primary mental health disorder, or 2) have been diagnosed with a secondary mental health disorder and the clinician’s office notes do not clearly show that the mental health condition is secondary to the effects of CFS.

    Other Financial Supports
    People with CFS may benefit from other social assistance programs offered through the government or community agencies. These may include medication discounts, food stamps, Supplemental Security Income from SSA, home health care assistance, help with paying utility or other bills, etc. Social workers and Centers for Independent Living are helpful sources of information about local programs for which people with CFS may be eligible.

    Additional Information/Resources
    Disability Evaluation Under Social Security (also known as the Blue Book; 187 pages)
    Disability Evaluation Under Social Security Blue Book General Information ; 13 pages

    Evidentiary Requirements for Medical Professionals Under Social Security Blue Book

    Disability Evaluation in a Nutshell: A Three-Minute Guide to Effective Medical Reports
    This 16-page booklet includes SSA listing of impairments (adult categories), an example of a hypothetical medical provider’s report and a “doctor’s checklist for functional impairment.”

    Physicians Disability Service (PDS)
    This attorney-developed website offers materials on various disability issues.

    American Academyof Disability Evaluating Physicians
    Activities include on going teaching of the management of disabled patients and impairment and disability evaluation to physicians, other health care providers, attorneys, regulators, legislators and others involved in the care of the disabled and coordinate research in the area of disability management.

    The CFS Empowerment Project
    A federally funded demonstration project that uses occupational therapy methods to improve patient quality of life.

    Screening Instruments

    Bell’s CFS Disability Scale

    Subjective Functional Capacity Assessment Tool

    Other Scales

    SF-36 Health Assessment Tool

    Multidimensional Fatigue Inventory

    For information on CFS and disability click here .


    Bell DS, The Doctor's Guide to Chronic Fatigue Syndrome; pp. 122-123. Addison-Wesley Publishing Company, Reading, MA. Copyright 1994, 1995.

    Hockenberry M, Wilson D, Winkelstein ML. Wong's Essentials of Pediatric Nursing , ed. 7, St. Louis, 2005, p. 1259. Used with permission. Copyrighted by Mosby, Inc.

    Lapp C. 1993. Subjective functional capacity assessment tool. Available at the CFIDS Association of America, Inc., P.O. Box 220398, Charlotte, NC 28222-0398.

    Smets EMA, Garssen B, Bonke B, De Haes JCJM. The multidimensional fatigue inventory (MFI) psychometric qualities of an instrument to assess fatigue. J Psychol Res 1995;39(5):315-25.

    Social Security Administration. SSR 99-2p: Policy Interpretation Ruling Titles II And XVI: Evaluating Cases Involving Chronic Fatigue Syndrome (CFS). 1999. Available at
    Accessed December 6, 2004.

    Social Security Administration. Disability Evaluation Under Social Security. 2003. Available at
    Accessed December 6, 2004.

    Wagner D, Nisenbaum R, Heim C, Jones JF, Unger ER, Reeves WC. Psychometric properties of the CDC Symptom Inventory for assessment of chronic fatigue syndrome. Population Health Metrics 2005 July 22; 3:8. Available at Accessed July 28, 2005.

    Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992 Jun;30(6):473-83.

  2. jenriker

    jenriker New Member

    My husband has been encouraging me to investigate SSD. I haven't worked for about 4 years, and have 2 small children. I have been sick for about 10 years and really hadn't considered disability. Lately my medical bills are extravagant, thus my husband's recent prodding to pursue this. I'm a little scared because I'm hearing so many horror stories, but your info will help in my research. Thanks again!
  3. mrdad

    mrdad New Member

    I have CFS and I just printed out you info for my file.
    Any good info. as you presented is very helpful.

    Hope you are doin' well,
  4. mrdad

    mrdad New Member

    I just read your Bio. and would greatly encourage you
    to seek some SSA help. Don't be intimadated by the slow
    "horror" stories. Time is a very important factor here
    and with young children the help would especially good.
    Look up the SSA on it's website and also www. disability Getting started is the hardest part.

    Best wishes,
    [This Message was Edited on 09/27/2006]
  5. suzetal

    suzetal New Member

    I have already got mine.I won on a bench approval last September.

    Thought this might help others.

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