Guide to Topics & Questions Asked - 2009/10

National Survey of Children with Special Health Care Needs, 2009/10

NOTE: 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.

**Denotes that original version of the variable is not released publicly. Variable may be recoded or omitted in public use data files.

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

• SECTION 1: NIS/SLAITS Eligibility
• SECTION 2: Initial Demographics
• SECTION 3: Child's Health and Functional Status
• SECTION 4: Access to Care – Use of Services and Unmet Needs
• SECTION 5: Care Coordination
• SECTION 6A: Family-Centered Care and Shared Decision Making
• SECTION 6B: Transition Issues
• SECTION 6C: Developmental Screening (6-17 years)
• SECTION 7: Health Insurance
• SECTION 8: Adequacy of Health Care Coverage
• SECTION 9: Impact on Family
• SECTION 9.5: ADD/ADHD Questions
• SECTION 10: Demographics
• SECTION 11: Additional Demographics

SECTION 1: NIS/SLAITS Eligibility

• How many people less than 18 years old live in this household? (S_UNDR18)
• Child's age **
• Child's sex (C2Q03_X )

SECTION 2: Initial Demographics

• Does [CHILD'S NAME] currently need or use medicine prescribed by a doctor, other than vitamins? (CSHCN1)
• Does [CHILD'S NAME] need or use more medical care, mental health or educational services than is usual for most children of the same age? (CSHCN2)
• Is [CHILD'S NAME] limited or prevented in any way in [his/her] ability to do the things most children of the same age can do? (CSHCN3)
• Does [CHILD'S NAME] need or get special therapy, such as physical, occupational, or speech therapy? (CSHCN4)
• Does [CHILD'S NAME] have any kind of emotional, developmental, or behavioral problem for which he/she needs treatment or counseling? (CSHCN5)

If YES to any of the items (K2Q10-K2Q23) above, two follow up questions are asked:

• Is this because of a medical, behavioral, or other health condition?
• Has this condition lasted or expected to last for 12 months or longer?

SECTION 3: Child's Health and Functional Status Information

• How often does [CHILD’S NAME]’s health condition affect [his/her] ability to do age-appropriate things? (C3Q02)
• If so, how much limitation does child experience? (C3Q03)
• Do [CHILD’S NAME]’s health care needs change all the time, change once in awhile or are usually stable? (C3Q11)
• Would you say [he/she] experiences any difficulty with any of the following:
  • Breathing or other respiratory problems, such as wheezing or shortness of breath? (C3Q23)
  • Swallowing, digesting food, or metabolism? (C3Q24)
  • Blood circulation? (C3Q25)
  • Repeated or chronic physical pain, including headaches? (C3Q26)
  • Seeing even when wearing glasses or contact lenses? (C3Q21)
  • Hearing even when using a hearing aid or other device? (C3Q22)
• Compared to other children [his/her] age, would you say he/she experiences a little difficulty, a lot of difficulty or no difficulty with each of the following:
  • Taking care of [himself/herself], for example, doing things like eating, dressing and bathing? (C3Q27)
  • Coordination or moving around (C3Q28)
  • Using [his/her] hands (C3Q29)
  • Learning, understanding, or paying attention? (C3Q30)
  • Speaking, communicating, or being understood? (C3Q31)
  • With feeling anxious or depressed? (C3Q32)
  • With behavior problems, such as acting-out, fighting, bullying, or arguing? (C3Q33)
  • Making and keeping friends? (C3Q34)
• You reported that [CHILD’S NAME] does not experience any difficulty in any of the areas just mentioned. In your opinion, would you say this is because [CHILD’S NAME]’s health problems are being treated and are under control? ( C3Q35 – asked only for children with no difficulties reported in questions C3Q21 through C3Q34)
  • Why is it that [CHILD’S NAME]’s health problems do not currently cause [him/her] difficulty? ( C3Q35A - asked only for respondents who reported that child’s health problems are NOT being treated and are under control (C3Q35=NO))

For the following list of conditions, has a doctor or other health care provider ever told you that [CHILD'S NAME] had the condition, even if [he/she] does not have the condition now? If yes, does [CHILD'S NAME] currently have the condition? Is that condition mild, moderate, or severe?

*The following list is applicable for ages 2-17 years only

• Attention Deficit Disorder or Attention Deficit Hyperactive Disorder (ADD or ADHD) (K2Q31A,K2Q31B,K2Q31C)
• Depression (K2Q32A,K2Q32B,K2Q32C)
• Anxiety Problems (K2Q33A,K2Q33B,K2Q33C)
• Behavioral or Conduct Problems (K2Q34A,K2Q34B,K2Q34C)
• Autism, Asperger’s Disorder, pervasive developmental disorder, or other autism spectrum disorder (K2Q34A,K2Q35B,K2Q35C,Age of Diagnosis: K2Q35D)
• Developmental Delay (K2Q36A,K2Q36B,K2Q36C)
• Intellectual Disability or Mental Retardation (K2Q37A,K2Q37B,K2Q37C)

*The following list is applicable for ages 0-17 years only

• Asthma (K2Q40A, K2Q40B)
• Diabetes (K2Q41A, K2Q41B)
• Epilepsy (K2Q42A, K2Q42B, K2Q42C)
• Migraine or Frequent Headaches (K2Q43A, K2Q43B)
• Head injury, concussion, or traumatic brain injury (K2Q44A, K2Q44B, K2Q44C)
• A heart problem, including congenital heart disease (K2Q45A, K2Q45B)
• Blood problems such as anemia or sickle cell disease (K2Q46A, K2Q46B, Type of blood problems: K2Q46C)
• Cystic Fibrosis (K2Q47A, K2Q47B)
• Cerebral Palsy (K2Q48A, K2Q48B)
• Muscular Dystrophy (K2Q49A, K2Q49B)
• Down Syndrome (K2Q50A, K2Q50B)
• Arthritis or other joint problems (K2Q51A, K2Q51B)
• Allergies (K2Q52A, K2Q52B, Food Allergies? K2Q52C)

• If school age, number of school days missed during the past 12 months because of illness or injury? (C3Q14)
• Do [CHILD’S NAME]’s (medical, behavioral, or other health conditions/ emotional, developmental, or behavioral problems) interfere with [his/her] ability to attend school on a regular basis? (C3Q40)
• Do [CHILD’S NAME]’s (medical, behavioral, or other health conditions/ emotional, developmental, or behavioral problems) interfere with [his/her] ability to participate in sports, clubs, or other organized activities? (C3Q41)
• Do [CHILD’S NAME]’s (medical, behavioral, or other health conditions/ emotional, developmental, or behavioral problems) interfere with [his/her] ability to participate in play with other children? (C3Q42)
• Do [CHILD’S NAME]’s (medical, behavioral, or other health conditions/ emotional, developmental, or behavioral problems) interfere with [his/her] ability to go on outings, such as to the park, library, zoo, shopping, church, or family gatherings? (C3Q43)

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

• Is there a place [CHILD’S NAME] usually goes when [he/she] is sick or you need advice about [his/her] health? (C4Q0A)
  • What kind of place? **
• Is there a place that [CHILD’S NAME] usually goes when [he/she] needs routine preventive care, such as a physical exam or a well-child check-up? (C4Q0D)
  • Is the [place selected in C4Q0B] that (CHILD’S NAME) goes to when [he/she] is sick the same place [CHILD’s NAME] usually goes for routine preventive care? ( C4Q01 – asked only for a YES response to C4Q0D )
  • What kind of place does [CHILD’S NAME] go for routine preventive care? ( C4Q02 – asked only for a NO response to C4Q01 )
• Do you have one or more persons you think of as [CHILD’S NAME]’s personal doctor or nurse? (C4Q02A)
  • Who is this person? ( C4Q02B – asked only for children who have a personal doctor or nurse)
• During past 12 months, did you have any difficulties or delays getting services for [CHILD’S NAME] because [he/she] was not eligible for the services? (C4Q03_B)
• During past 12 months, did you have any difficulties or delays because there were waiting lists, backlogs, or other problems getting appointments? (C4Q03_C)
• During past 12 months, did you have any difficulties or delays because of issues related to cost? (C4Q03_D)
• During past 12 months, did you have any difficulties or delays because you had trouble getting the information you needed? (C4Q03_E)
• During past 12 months, did you have any difficulties or delays for any other reason? ( C4Q03_F– asked only for parents of children who reported not having any difficulties or delays in questions C4Q03_A thru _E)
• During the past 12 months, how often have you been frustrated in your efforts to get services for [CHILD’S NAME]? (C4Q04)
• During the past 12 months, how many times did [CHILD’S NAME] visit a hospital emergency room? (C6Q00)
• During the past 12 months, how many times did [CHILD’S NAME] receive a well-child check-up, that is a general check-up, when [he/she] was not sick or injured? (K4Q20)
• During the past 12 months, how many times did [CHILD’S NAME] see a dentist for preventive dental care, such as check-ups and dental cleanings? (K4Q21)

During the past 12 months was there any time when [CHILD’S NAME] needed the following services:

*Response options for C4Q05_1B-7B and C4Q06_1B-3B list 16 different reasons for not receiving all needed [__] care: (1) COST WAS TOO MUCH (2) NO INSURANCE (3) HELATH PLAN PROBLEM (4) CAN’T FIND PROVIDER WHO ACCEPTS CHILD’S INSURANCE (5) NOT AVAILABLE IN AREA/TRANSPORT PROBLEMS (6) NOT CONVENIENT TIMES/COULD NOT GET APPOINTMENT (7) PROVIDER DID NOT KNOW HOW TO TREAT OR PROVIDE CARE (8) DISSATISFACTION WITH PROVIDER (9) DID NOT KNOW HWERE TO GO FOR TREATMENT (10) CHILD REFUSED TO GO (11) TREATMENT IS ONGOING (13) NO REFERRAL (14) LACK OF RESOURCES AT SCHOOL (15) DID NOT GO TO APPT/NEGLECTED APPT/FORGOT APPT (16) OTHER:___

• Does [CHILD’S NAME] receive Early Intervention Services? (C3Q12 – children ages under 3 only )
• Does [CHILD’S NAME] receive Special Education Services? (C3Q13 – children ages 3 and older only )
  • How old was [CHILD’S NAME] when [he/she] first began receiving Special Education Services? (C3Q13A – asked only for children who receive Special Education Services)
  • At any time before [CHILD’S NAME] was 3 years old, did [he/she] receive services from a program called Early Intervention Services? ( C3Q13B – asked only for children who receive Special Education Services)
• During the past 12 months, did [CHILD’S NAME] use any type of alternative health care or treatment? (C3Q15 )

SECTION 5: Care Coordination

• Did [CHILD’S NAME] use any other health-related medical, educational, or social services in the past 12 months? ( C5Q01– only children who previously reported receiving less than two services on questions K4Q20, K4Q21, C4Q05_1A-C4Q05_14A, C4Q05_2C-C4Q05_14C, C3Q12, C3Q13, and C3Q15)
• During the past 12 months, did [CHILD’S NAME] need a referral to see any doctors or receive any services? (C5Q11)
  • Was getting referrals a big problem, a small problem, or not a problem? (C4Q07)

If child received two or more of the following services in the past 12 months (questions K4Q20, K4Q21, C4Q05_1A-C4Q05_14A, C4Q05_2C-C4Q05_14C, C3Q12, C3Q13, C3Q15, and C5Q01):

• Does anyone help you arrange or coordinate [CHILD’S NAME]’s care among the different doctors or services that he/she uses? (C5Q12)
• Does a doctor or someone in a doctor’s office provide this help arranging or coordinating [CHILD’S NAME]’s care? (C5Q13 – only children with YES to help coordinating care)
• Is there anyone else who helps arrange or coordinate [CHILD’S NAME]’s care? (C5Q15 – only children with YES to help coordinating care and YES to doctor or someone in doctor’s office providing help)
• Who does provide help arranging or coordinating [CHILD’S NAME]’s care? (C5Q16 – only children with YES to help coordinating care)
• During the past 12 months, have you felt that you could have used extra help arranging or coordinating [CHILD’S NAME]’s care among these different health care providers or services? (C5Q17)
• How often did you get as much help as you wanted with arranging or coordinating [CHILD’S NAME]’s care? (C5Q09)
• Overall, are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied with the communication among [CHILD’S NAME]’s doctors and other health care providers? (C5Q10)
• Do [CHILD’S NAME]’s doctors or other health care providers need to communicate with [his/her] school, early intervention program, child care providers, vocational education or rehabilitation program? (C5Q05)
• Overall, are you very satisfied, somewhat satisfied, somewhat dissatisfied, or very dissatisfied with that communication? (C5Q06 – only children with YES to doctors communicating with school)

SECTION 6A: Family Centered Care and Shared Decision Making

• In the past 12 months, did [CHILD’S NAME] visit any doctors or other health care providers? (C6Q01– only asked of children who reported using less than 1 service during past 12 months on questions C4Q05_1A through C4Q05_10A, C4Q05_2C through C4Q05_10C, K4Q20, and K4Q21)

If child received 1 or more of the following services during the past 12 months (questions C4Q05_1A through C4Q05_10A, C4Q05_2C through C4Q05_10C, K4Q20, and K4Q21):

• How often did [CHILD’S NAME]’s doctors and other health care providers spend enough time with [him/her]? (C6Q02)
• How often did [CHILD’S NAME]’s doctors and other health care providers listen carefully to you? (C6Q03)
• How often were [CHILD’S NAME]’s doctors and other health care providers sensitive to your family’s values and customs? (C6Q04)
• How often did you get the specific information you needed from [CHILD’S NAME]’s doctors and other health care providers? (C6Q05)
• 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)

• How often did [CHILD’S NAME]’s doctors or other health care providers discuss with you the range of options to consider for [his/her] health care or treatment? (C6Q21)
• How often did they encourage you to ask questions or raise concerns? (C6Q22)
• How often did they make it easy for you to ask questions or raise concerns? (C6Q23)
• How often did they consider and respect what health care treatment choices you thought would work best for [CHILD’S NAME]? (C6Q24)

SECTION 6B: Transition Issues

• Do any of [CHILD’S NAME]’s doctors or other health care providers treat only children? (C6Q07 – ages 12-17 only)
  • Have they talked with you about having [CHILD’S NAME] eventually see doctors or other health care providers who treat adults? (C6Q0A_B – only children ages 12-17 with YES to providers only treating children)
  • Would a discussion about doctors who treat adults have been helpful to you? (C6Q0A_C – only children ages 12-17 with NO to talking with doctor about seeing providers who treat adults)
• Have [CHILD’S NAME]’s doctors or other health care providers talked with you or [CHILD’S NAME] about [his/her] health care needs as he/she becomes an adult? (C6Q0A– ages 12-17 only)
  • Would a discussion about [CHILD’S NAME]’s health care needs have been helpful? (C6Q0A_D– only children ages 12-17 with NO to providers talking about transition to adulthood)
• Has anyone discussed with you how to obtain or keep some type of health insurance coverage as [CHILD’S NAME] becomes an adult? (C6Q0A_E– ages 12-17 only)
  • Would a discussion about health insurance have been helpful to you? (C6Q0A_F– only children ages 12-17 with NO to discussion about health insurance coverage)
• How often do [CHILD’S NAME]’s doctors or other health care providers encourage [him/her] to take responsibility for [his/her] health care needs, such as:
  • Learning about [his/her] conditions or helping with treatments and medications? (C6Q08 – children ages 5-11 only)
  • Taking medication, understanding [his/her] diagnosis, or following medicine advice? (C6Q08 – children ages 6-12 only )

SECTION 6C: Developmental Screening (4 months - 5 years)

• During the past 12 months, did a doctor or other health care provider have you fill out a questionnaire about specific concerns or observations you may have had about [CHILD’S NAME]’s development, communication, or social behaviors? (C6Q30)
  • Did this questionnaire ask about your concerns or observations about how [CHILD’S NAME] talks or makes speech sounds? (C6Q31A– only children 12-23 months with YES to filling out questionnaire )
  • Did this questionnaire ask about your concerns or observations about how [CHILD’S NAME] interacts with you and others? (C6Q31B– only children 12-23 months with YES to filling out questionnaire)
  • If NOT ENROLLED, at any time during the past 12 months, was [CHILD'S NAME] enrolled in a public school, a private school, or home school? (C6Q32A– only children 2-5 years with YES to filling out questionnaire)
  • If NOT ENROLLED, at any time during the past 12 months, was [CHILD'S NAME] enrolled in a public school, a private school, or home school? (C6Q32B– only children 2-5 years with YES to filling out questionnaire)

SECTION 7: Health Insurance

This section asks an extensive series of questions about [CHILD’S NAME]’s health insurance status and source(s) of coverage. Responses to these questions are considered confidential, but are used to determine if a child is insured at the time of the survey. The following variables are released in the public use dataset.

• How many CSHCN were without insurance at the time of the survey?
• How many CSHCN were without insurance at some point in the past year?
• How many CSHCN have private or public insurance?

SECTION 8: Adequacy of Health Care Coverage

• Does [CHILD’S NAME]’s health insurance offer benefits or cover services that meet [his/her] needs? (C8Q01_A – only children with current insurance)
• Are the costs not covered by [CHILD’S NAME]’s health insurance reasonable? (C8Q01_B – only children with current insurance)
• Does [CHILD’S NAME] health insurance company allow [him/her] to see the health care providers he/she needs? (C8Q01_C – only children with current insurance)

SECTION 9: Impact on the Family

• During the past 12 months, would you say that the family paid more than $500, $250-$500, less than $250 or nothing for [CHILD’S NAME]’s medical care? (C9Q01)
  • Would you say that the family paid more than $5,000, $1,000 to $5,000, or less than $1,000 for [CHILD’S NAME]’s medical care? ( C9Q01A – asked only for children paying more than $500 for medical care))
• Do you or other family members provide health care at home for [CHILD’S NAME]? (C9Q02)
  • How many hours per week? (C9Q03 – asked only for children whose family members provide health care at home)
• How many hours a week do you or other family members spend arranging or coordinating [CHILD’S NAME]’s care? (C9Q04)
• Have [CHILD’S NAME]’s health conditions caused financial problems for your family? (C9Q05)
• Have you or other family members stopped working because of [CHILD’S NAME]’s health conditions? (C9Q10)
• Have you or other family members cut down on the hours you work because of [CHILD’S NAME]’s health? (C9Q06)
• Have you or other family members avoided changing jobs because of concerns about maintaining health insurance for [CHILD’S NAME]? (C9Q11)

SECTION 9.5: ADD/ADHD Questions (only asked of children who currently have ADD/ADHD)

• Earlier you told me that [CHILD’S NAME] currently has ADD or ADHD. At any time during the past week, did [he/she] take medication for ADD or ADHD? (C95Q01)
  • What medications did [CHILD’S NAME] take for ADD or ADHD? (C95Q01A - only asked for children who took medication for ADD or ADHD in past week)
  • In the past 12 months, did [CHILD’S NAME] take any medication for ADD or ADHD? (C95Q02 – only asked for children who did NOT take medication for ADD or ADHD in past week)
• At any time during the past 12 months, did [CHILD’S NAME] receive behavioral treatment for ADD or ADHD? (C95Q03)
• At any time during the past 12 months, did [CHILD’S NAME] take a dietary supplement to treat ADD or ADHD? (C95Q04)
  • In the past week, did [CHILD’S NAME] take a dietary supplement to treat ADD or ADHD? (C95Q04A – only asked for children who took a dietary supplement during past 12 months)

SECTION 10: Demographics

• Including the adults and all the children, how many people live in your household? (C10Q01)
• What is your relationship to [CHILD’S NAME]? (C10Q02A)**
• What is the highest grade or year of school (you have/ [CHILD'S NAME]'s [MOTHER TYPE]/ [CHILD'S NAME]'s [FATHER TYPE]/ has) completed? (C10Q20,C10Q21,C10Q22)
• Is [CHILD’S NAME] of Hispanic, Latino, or Spanish origin? **
• Is [CHILD’S NAME]’s White, Black or African American, American Indian, Alaska Native, Asian, Native Hawaiian, or other Pacific Islander? **
• What is the primary language spoken in your home? (C10Q40)**
• Do you rent or own your home? (C10Q41)**

SECTION 11: Additional Demographics

• Does [CHILD’S NAME] receive Supplemental Security Income (SSI)? (C11Q12)
  • Is this for a disability? (C11Q13 – asked for children who received supplemental security income)**
• 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 – asked only for households below the 200% poverty level )