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Input to the survey completed on December 15, 1996. You may view the results.

Dear Parents:

Thanks to all of you and your overwhelming support of my thesis project-a handbook for parents of school-age children with diabetes. Your contributions made my work possible. I think we all learned from eachother, and hopefully the handbook will help those still struggling with problems with diabetes management in the schools. My handbook is being reviewed for medical and legal accuracy and then will be made available for your review in January. Please feel free to email me as some of you had asked questions but neglected to give me your email address.

Andrea

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Dear Parents,

I am conducting research for my master's thesis in special education so that I can write a handbook for parents of school age children with diabetes. This project was borne out of my struggle with the public school system to help manage my six-year-old son's diabetes. The survey takes approximately 15 minutes to answer. Thanks in advance for your time and assistance.

Andrea DeFusco
8 Whetstone Hill Court
Fairfield, Connecticut 06430

Survey

Background information

1) In what state do you live?

2) In what school district do you live?

3) Does your child attend public or private school?
Select Public Private

4) Does your child's school have nursing coverage on a full-time basis? If not, please explain the coverage available.

5) How old is your child?

6) At what grade level is your child?

7) Is your child a boy or girl?
Select Girl Boy

8) How long has your child had diabetes?

9) Does your child practice intensive insulin therapy (e.g. does your child aim for extremely "tight" control as a result of the findings of the DCCT-Diabetes Control and Complications Trial)?
Select No Yes I don't know

10) How often does your child check blood glucose levels?

10a) Is blood glucose testing done at school?
Select No Yes I don't know

11) How many shots a day does your child receive?

11a) Are insulin injections needed during school day?
Select No Yes I don't know

12) Does your child require midmorning and midafternoon snacks while in school?
Select No Yes I don't know

13) Does your child have an IEP (Individualized Education Plan) or an IHCP (Individualized Health Care Plan) written as the result of a PPT (Planning and Placement Team) meeting at school? If yes, who requested the PPT?

14) Do you know the legal rights of your child?
Select No Yes

15) How did you become educated about your legal rights?

16) Has anyone from your child's school ever explained the difference to you between the Individuals with Disabilities Act (IDEA) and Section 504 of the Rehabilitation Act of 1973?
Select No Yes I don't know

17) Do either of the parents have type I diabetes (also called diabetes mellitus or juvenile diabetes)?
Select No Yes, father Yes, mother Yes, both I don't know

18) Do either of the parents work in the education system?
Select No Yes, father Yes, mother Yes, both I don't know

19) What is your current level of education?

School district questions

20) Before the start of each academic year, how do you approach the school about your child's diabetes?

21) Has your school district ever prohibited blood glucose testing on school property?
Select No Yes I don't know

22) Does your school district specify where blood glucose testing must take place? (nurses office, class room, restroom, etc.)
Select No Yes I don't know

23) What is the district's policy regarding who conducts the blood glucose testing? (Can your child do it with supervision? Does the teacher do it? Must the nurse do it?)

24) What is the district's policy regarding treatment of mild hypoglycemic reactions? (Can your child treat his/her own low blood sugar right in the classroom? Does the teacher do it? Must the nurse do it? Do the parents need to be summoned? Is the child allowed to stay in school?)

25) Has your child ever been sent alone to the nurse's office during an episode of low blood sugar? With a peer?

26) Who records episodes of low blood sugar at school?

27) How is this information communicated to parents?

28) Does your child usually recognize when he/she is experiencing low blood sugar?
Select No Yes Sometimes I don't know

29) Has your child's teacher been able to recognize signs of low blood sugar?
Select No Yes Sometimes I don't know

30) In your school, who can administer glucagon?

31) Does your child's school district prohibit insulin injections while on school property?
Select No Yes I don't know

32) Has your child been excluded from field trips?
Select No Yes I don't know

33) Are their stipulations regarding your child and field trips? (e.g. parent or guardian must accompany)

34) Have all of the school personnel who come in contact with your child been educated by an expert on diabetes? (principal, office personnel, gym teacher, art teacher, music teacher, sports coaches, cafeteria monitors, playground monitors, bus drivers etc.)

35) Who has provided school staff with diabetes education?

36) Does your child's school nurse seem competent and knowledgeable about diabetes mellitus? Has he/she had training specifically regarding diabetes mellitus? Where did he/she receive this training?

37) How do you notify all personnel that come in contact with your child that he/she has diabetes? Do you provide them with a fact sheet containing photo and information about their diabetes, such as how your child usually acts during hypoglycemic episodes?

38) How are substitute staff informed of your child's diabetes?

39) Have your child's classmates been educated about diabetes?

40) Who conducted the education session and how?

41) Has your child ever been made fun of or isolated by peers because of their misperceptions about diabetes?

42) Is your child allowed to eat the snacks in the classroom?
Select No Yes I don't know

43) If your child is young, who reminds him/her that it is snack time? How (e.g. is a timer used or some visual cue)?

44) If classroom teacher provides reminder of snack time, does he/she forget to remind child to eat snacks?
Select No Yes Sometimes I don't know

45) Where does your child keep snacks and emergency sugar supplies (In teacher's desk, with nurse, in his/her own desk, locker, fanny pack)?

46) If your child's blood sugar is too high, does he/she avoid physical exertion? (was he/she ever forced to exercise due to the mistaken belief that exercise would bring down his/her high blood glucose)?

47) Has your child ever been denied access to the bathroom or drinking fountain, especially on days he/she has ketones in urine?
Select No Yes I don't know

48) Who supervises your child's lunch period?

49) Does your child eat hot or cold lunch or both?
Select Cold Hot Both I don't know

50) What if your child doesn't like the food selection and refuses to eat?

51) What does your child do if he/she needs more time to eat?

52) Has your child ever been denied full participation in school sports or extra-curricular activities because of diabetes?
Select No Yes I don't know

53) Has your child ever been disciplined in school for inappropriate behaviors that were the result of low/high blood glucose levels (e.g., uncontrollable crying, aggressiveness, lethargy)?
Select No Yes I don't know

54) How do you handle classroom birthday parties/and food incentives (such as edible math manipulatives)?

55) Has your child ever been forced to take an exam or participate in a presentation or academic activity despite recovering from an episode of low blood sugar or during an episode of extremely high blood sugar?
Select No Yes I don't know

If you have any comments on topics not covered, please enter them here. If you would like a response, please include your name and e-mail address.

Input to the survey completed on December 15, 1996.

---

Thank you very much for your time. Please feel free to email me with any additional comments.
Andrea

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