Guide to Topics & Questions Asked - 2001

National Survey of Children with Special Health Care Needs 2001

Telephones are dialed at random to identify households with one or more children under 18 years old. The interviewer asks to speak to the parent or guardian who knows the most about the child's or children's health and health care. If he or she is not available, multiple call back attempts are made to reach them. If the parent or guardian's language is not English, arrangements are made to call back later to administer the survey in another language.

Click on the question numbers in blue text below to view the full text of the question and its response options.

• SECTION 1: Initial Household Screening for Special Health Care Needs
• SECTION 2: Respondent Information
• SECTION 3: Child Health and Functional Status
• SECTION 4: Access to Care - Use of Services and Unmet Needs
• SECTION 5: Care Coordination
• SECTION 6: Satisfaction with Care - Family Centered-ness of Child's Care
• SECTION 7: Health Insurance
• SECTION 8: Adequacy of Health Care Coverage
• SECTION 9: Impact on the Family
• SECTION 11: Household Income
• SECTION 11A: Telephone Line and Household Information
• SECTION 12: Medicaid/S-CHIP Knowledge and Experience
• SECTION 13: Utilization and Barriers to Care Questions for Low-Income/Uninsured Children without Special Health Care Needs

SECTION 1: Initial Household Screening for Special Health Care Needs

The parent or guardian who is the most familiar with the health and health care situations of the children in the household answers the following questions for each child in the household under 18 years old:

1. Child's age (S_UNDR18)
2. Child's sex (C2q03)
3. Child's race/ethnicity ( CW10q01, CW10q02, CW10q03)
4. CSHCN Screener questions:
   • Does child need or use more medical care, mental health or educational services than is usual for most children of the same age? (FACCT2)
   • Does child currently need or use medicine prescribed by a doctor? (FACCT1)
   • Is child limited in any way in his/her ability to do the things most children of the same age can do? (FACCT3)
   • Does child need or get special therapy such as physical, occupational, or speech therapy? (FACCT4)
   • Does child have any kind of emotional, developmental or behavioral problem for which he/she needs treatment or counseling? (FACCT5)

If YES one or more of the five screening questions above, then two follow up questions are asked: Follow up questions:

• Part A: Is this because of a medical, behavioral, or other health condition?
• Part B: Has this condition lasted or is it expected to last for at least 12 months?

NOTE: Child qualifies as having a special health care need if at least one of the screening questions AND both follow up questions are answered "YES"

After the initial screening is completed, a single CSHCN is randomly selected from those households having one or more children who qualify as having special health needs. A total of 750 Children with Special Health Care Needs Interviews are conducted in each state.

The selected child ([CHILD'S NAME]) is the focus of the CSHCN Interview questions answered by the child's parent or guardian in Sections 2 - 11A below.

SECTION 2: Respondent Information

1. Respondent's relationship to the [CHILD'S NAME] (C2q04_a)
2. Respondent's educational level (CW10q04)
3. Mother's educational level (if respondent is not mother) (CW10q04_a)

SECTION 3: Child Health and Functional Status

1. Does [CHILD'S NAME]'s health condition affect his/her ability to do age-appropriate things? - If so, how much limitation does child experience? (C3q02-C3q03)
2. Parent-rated severity of [CHILD'S NAME]'s health conditions or problems (0 - 10 rating scale) (C3q10)
3. Do [CHILD'S NAME]'s health care needs change all the time, change once in awhile or are usually stable? (C3q11)
4. Does [CHILD'S NAME] receive Early Intervention Services? (children younger than 2 only) (C3q12)
5. Does [CHILD'S NAME] receive Special Education Services? (children age 2 and older only) (C3q13)
6. If school age, number of school days missed during the past 12 months because of illness or injury? (C3q14)

SECTION 4: Access to Care - Use of Services and Unmet Needs

1. Is there a place you usually go when [CHILD'S NAME] is sick or you need advice? - If YES, what kind of place? If NO, what kind of place do you most often go and is it the same place [CHILD'S NAME] goes for routine preventive care? (C4q0a-C4q0b)
2. What kind of place does [CHILD'S NAME] go for routine preventive care? (C4q01-C4q02)
3. Do you have one person you think of as [CHILD'S NAME]'s personal doctor or nurse? - If YES, what type of health provider is he/she? (C4q02a)
4. In past 12 months, have you delayed or gone without health care for [CHILD'S NAME]? - If YES, reason for the delay. (C4q03-C4q04a thru l)
5. In the past 12 months, did [CHILD'S NAME] need any of the following: (C4q05_01-C4q05_14)
   1. preventive care (C4q05_01)
   2. specialist care (C4q05_03)
   3. dental care (C4q05_04)
   4. prescription medication (C4q05_05)
   5. occupational, physical or speech therapy (C4q05_06)
   6. mental health care or counseling (C4q05_07)
   7. substance abuse treatment (C4q05_08)
   8. home health care (C4q05_09)
   9. eyeglasses or vision care (C4q05_10)
   10. hearing aids or care (C4q05_11)
   11. mobility aids (C4q05_12)
   12. medical supplies (C4q05_13)
   13. other medical equipment (C4q05_14)

If YES to any of the above - did child get needed care? If NO - reason for not receiving care.(C4q05_01a-C4q05_14a)

6. In the past 12 months, did you or other family members need any of the following services because of [CHILD'S NAME]'s health:
   1. professional help with care coordination (C4q06_0a)
   2. respite care (C4q06_01)
   3. genetic counseling (C4q06_02)
   4. mental health care or counseling (C4q06_03)
      If YES to any of the above - did family get needed care? If NO - reason for not receiving care.(C4q06_0a)
   5. In the past 12 months, how much of a problem was it to get a referral to a specialist for [CHILD'S NAME]? (C4q07)

SECTION 5: Care Coordination

NOTE: Questions 1 through 5 are only asked of those respondents who reply YES to the question C4q060a in Section 4 asking if the family needed a professional to help coordinate [CHILD'S NAME]'s care:

1. How often does a professional help you coordinate [CHILD'S NAME]'s care? (C5q02)
2. Is the care coordinator in [CHILD'S NAME]'s primary care provider's office? (C5q03)
3. Who does the professional care coordinator work for? (health insurance plan, maternal and child health program, other state agency, specialty or other doctor, other) (C5q03a)
4. How satisfied are you with the help you receive in coordinating [CHILD'S NAME]'s care? (C5q04)
5. How well do you think [CHILD'S NAME]'s health care providers communicate with each other? (C5q05)

NOTE: Questions 6 through 7 are asked of all respondents.

6. How well do you think [CHILD'S NAME]'s health care providers communicate with his/her school, early intervention program, child care providers, or vocational rehabilitation program? (C5q06)
7. Have you heard of [name of respondent's state Title V program]? - If YES, does [CHILD'S NAME] get any health care services, care coordination, medications, equipment, or supplies through the Title V program? (C5q07-C5q08)

SECTION 6: Satisfaction with Care - Family Centered-ness of Child's Care

In the past 12 months:

1. How many times did [CHILD'S NAME] visit a doctor or other health care provider? (C6q01)
2. How often did [CHILD'S NAME]'s doctors and other health care providers spend enough time with him/her? (C6q02)
3. How often did [CHILD'S NAME]'s doctors and other health care providers listen carefully to you? (C6q03)
4. How often were [CHILD'S NAME]'s doctors and other health care providers sensitive to your family's values and customs? (C6q04)
5. How often did you get the specific information you needed from [CHILD'S NAME]'s doctors and other health care providers? (C6q05)
6. How often did [CHILD'S NAME]'s doctors and other health care providers help you feel like a partner in his or her care? (C6q06)

NOTE: Items 7 through 10 are asked for youth 13 - 17 yrs old.

7. Have [CHILD'S NAME]'s doctors or other health care providers talked with you and [CHILD'S NAME] about how his/her needs might change as he/she becomes an adult? (C6q0a)
8. Has a plan for addressing these changing needs been developed with [CHILD'S NAME]'s doctors or other health care providers? (C6q0a_a)
9. Have [CHILD'S NAME]'s doctors or other health care providers discussed having [CHILD'S NAME] eventually see a doctor who treats adults? (C6q0a_b)
10. Has [CHILD'S NAME] received any vocational or career training to help him/her prepare for a job when he/she becomes an adult? (C6q0b)

NOTE: Items 11 through 12 are asked for all children.

11. Thinking about [CHILD'S NAME]'s health needs and the services he/she receives, how satisfied or dissatisfied are you with those services? (C6q0c)
12. Thinking about the services [CHILD'S NAME] needs, are those services organized in a way that makes them easy to use? (C6q0d)

SECTION 7: Health Insurance

This section asks an extensive series of questions about the [CHILD'S NAME]'s health insurance status and source(s) of coverage. Responses to these questions are used to determine whether a child has health insurance at the time of the survey.

• For children who are insured at the time of the survey, information about the type and source of coverage including private, employer-based, Medicaid, S-CHIP, other public insurance, military, native American, Title V, etc. is included in the final data available to users.
• For children who are uninsured at the time of the survey, information about the length of time without insurance during the 12 months prior to the survey is included in the final data available to users.

SECTION 8: Adequacy of Health Care Coverage

NOTE: The following questions are only asked for those children who are currently insured:

1. Does [CHILD'S NAME]'s health insurance offer benefits that meet his/her needs? (C8q01_a)
2. Are the costs not covered by [CHILD'S NAME]'s health insurance reasonable? (C8q01_b)
3. Does the health insurance company allow [CHILD'S NAME] to see the health care providers he/she needs? (C8q01_c)
4. In the past 12 months, have you called or written [CHILD'S NAME]'s health plan with a complaint or a problem? (C8q02)
5. Parent-rating of [CHILD'S NAME]'s health plan (0 - 10 rating scale) (C8q03)
6. If you could, would you switch health plans? (C8q04)
7. Do you have enough information about how [CHILD'S NAME]'s health plan works? (C8q05)
8. Do you believe [CHILD'S NAME]'s health plan is good for CSHCN? (C8q06)

SECTION 9: Impact on the Family

1. During the past 12 months, how much has your family paid out-of-pocket for [CHILD'S NAME]'s health related needs? (C9q01-C9q01a)
2. Do you or other family members provide home health care for [CHILD'S NAME]? - If YES, how many hours per week? (C9q02)
3. How many hours a week do you or other family members spend arranging or coordinating [CHILD'S NAME]'s care? (C9q03-C9q04)
4. Has [CHILD'S NAME]'s health condition(s) caused financial problems for the family? (C9q05)
5. Have you or other family members cut down on hours worked to care for [CHILD'S NAME]? (C9q06)
6. Have you needed additional income to cover [CHILD'S NAME]'s medical expenses? (C9q07)
7. Have you or other family members stopped working because of [CHILD'S NAME]'s health condition(s)? (C9q10)

SECTION 10

This section originally contained questions used during the pretest phases to help develop the final survey. These questions are not included in the final version of the National Survey of CSHCN.

SECTION 11: Household Income

1. How many people in household? (C11q01_a)
2. Total combined household income before taxes (C11q01)
3. Does [CHILD'S NAME] receive Supplemental Security Income (SSI)? - If YES, is this for a disability? (C11q12)
4. At any time during the last 12 months, did anyone in the household receive any cash assistance from a state or county welfare program? (C11q11)

SECTION 11A: Telephone Line and Household Information

The questions in this section ask about zip code and number of telephone lines in the household. This information is used to mathematically adjust the sample so it more accurately represents all families, including those without telephones.

SECTION 12: Medicaid/S-CHIP Knowledge and Experience

The questions in this section are asked in each state for a small group of children identified as uninsured yet eligible for Medicaid and/or S-CHIP coverage - approximately 200 children per state overall, only 20 - 30 of which are likely to be CSHCN. The content focuses on respondents' familiarity and experience with their specific states' Medicaid and S-CHIP programs. Responses to questions in this section are not comparable for CSHCN and non-CSHCN at the state-level because of the small numbers of CSHCN represented.

SECTION 13: Utilization and Barriers to Care Questions for Low-Income/Uninsured Children without Special Health Care Needs

The questions in this section are asked in each state for a small group (approximately 200 per state) of non-CSHCN identified as being uninsured yet eligible for Medicaid and/or S-CHIP coverage. The questions asked for these children are the same as those asked in the CSHCN-specific portion of the survey.