Selected Heritable Disorders of Connective Tissue and Disability (2022) / Chapter Skim
Currently Skimming:
1 Introduction
1 Introduction
Pages 13-24
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provides financial assistance to people with disabilities through the Social Security Disability Insurance (SSDI) (Title II of the Social Security Act)
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Disability determinations in children follow a three-step sequential evaluation process. After determining administrative eligibility and the presence of a medical impairment of sufficient duration and severity, SSA assesses in step 3 whether the impairment(s)
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STUDY CHARGE AND SCOPE In 2020, SSA requested that the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine convene a committee of relevant experts to review the current state of medical knowledge and practice regarding selected HDCTs. The Committee on Selected Heritable Disorders of Connective Tissue was charged with determining the latest standards of care, technology for understanding disease processes, treatment modalities, and science demonstrating the effect of these disorders on the health and functional capacity of adults and children (see Box 1-1 for the committee's statement of task)
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: 1. Provide an overview of the current status of the diagnosis, treatment, and prognosis of selected heritable connective tissue disorders, includ ing but not necessarily limited to Ehlers-Danlos syndrome and Marfan syndrome, in the U.S.
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5. For the connective tissue disorders identified in task 1, identify to the degree possible the functional limitations associated with each disorder, including physical functioning limitations, mental functioning limitations, limitations resulting from common treatments, and variations in function ing (e.g., during flare-ups vs.
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It should be noted that such accommodations as assistive technologies and environmental modifications are environmental contextual factors that act on the ICF domains to enhance an individual's activity and participation. As noted above, SSA's definition of disability in adults is "inability to engage in any SGA by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months."5 SGA is work activity that "involves doing significant and productive physical or mental duties" or activity that "is done (or intended)
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Bureau of Labor Statistics collects about the physical and mental demands of jobs for inclusion in the Occupational Information System. SSA classifies jobs as sedentary, light, medium, heavy, and very heavy based on the level of physical exertion required for the work.7 SSA distinguishes between two types of limitations: exertional and nonexertional.
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Terminology Secondary Impairments The committee was tasked with describing, to the extent possible, secondary impairments that result from the HDCTs or their treatments. Because there is not always a known or clear causal link between the disorder and all of its manifestations, the committee understands "secondary impairments" to mean physical and mental manifestations (medical diagnoses, syndromes, or comorbid and other health conditions)
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This search encompassed PubMed and Scopus, as well as websites including those of the International Consortium on Ehlers-Danlos Syndromes & Hypermobility Spectrum Disorders, the EDS & HSD Community Coalition (formerly "the EDS Comorbidity Coalition") , The Ehlers-Danlos Society, The Marfan Foundation, and SSA.
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. The committee's work was further informed by several previous reports of the National Academies: Cardiovascular Disability: Updating the Social Security Listings (IOM, 2010)
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2021a. Annual statistical report on the Social Security Disability Insurance program, 2020.
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