FDS Individual Scores: Answers from the following nine individual categories included in the overall FDS were also analyzed. Answers from FDS1 were most often included in this analysis. However, the range of responses selected for each question included responses from any available FDSs (FDS1 through FDS3).
Education/Employment : Regarding education, 75% of subjects (9 of 12) attended a special school or had special education classes (Table 4). Responses ranged from “regular school grade-appropriate for age (within 2 years)” to “special school or special education classes”, with no participants selecting “no formal schooling. Concerning employment, the most often selected response was sheltered workshop (i.e., works at an institution dedicated to disabled employees) (50%, 2 of 4); however, responses ranged from a special job (i.e., works at a conventional workplace, but requires special supervision) to unable to work/homebound. From FDS1 to FSD2, 5 subjects’ scores in education/employment increased, 1 decreased, and 3 did not change.
Speech: The most often selected response was speech understandable, but with difficulty (37.5%, 6 of 16) with responses ranging from no verbal communication to detectable speech disturbance but easily understood. None of the participants selected normal speech. From FDS1 to FDS2, 1 participant’s score for speech increased, 2 decreased, and 6 did not change.
Diet: The most often selected response was “normal swallowing” (5 of 16), with responses ranging from “normal swallowing” to “tube feedings only”. From FDS1 to FDS2, 2 participants’ scores in diet increased, 5 decreased, and 2 did not change.
Dressing: The most often selected response was total dependence (50%, 8 of 16) with responses ranging from independent with decreased efficiency to total dependence. From FDS1 to FDS2, 3 participants’ scores in dressing decreased and 6 did not change.
Toilet: The most often selected response was “total dependence” (9 of 16) with responses ranging from “normal” to “total dependence”. From FDS1 to FDS2, 1 participant’s score for toileting increased, 3 decreased, and 5 did not change.
Drawing/Writing: The most often selected response was can scribble but cannot draw or write letters (62.5%, 10 of 16), with responses ranging from can draw or write letters to cannot reach for and grasp writing utensil. None of the subjects were reported to be able to write/draw normally for their age. From FDS1 to FDS2, 3 participants’ scores for drawing/writing increased, 2 decreased, and 4 did not change.
Walking: The most often selected response was “wheelchair or bedbound” (56%, 9 of 16), with responses ranging from can walk a few steps, but needs adaptive aids or other support to wheelchair or bedbound. From FDS1 to FDS2, 1 participant’s score for walking increased, 3 decreased, and 5 did not change.
Sitting: The most often selected response was “cannot sit without support” (87.5%, 14 of 16). From FDS1 to FDS2, 1 participant’s score for sitting decreased and the remaining 8 did not change.
Breathing: The most often selected response was normal breathing (62.5%, 10 of 16), with responses ranging from normal breathing to intermittent use of non-invasive respiratory support. None of the participants selected ventilator or constant respiratory support. From FDS1 to FDS2, 1 participant’s score for breathing increased, 1 decreased, and 7 did not change.