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Guide to Topics & Questions Asked

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.


  • 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)

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

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

  • 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)
  • Do you have one or more persons you think of as [CHILD’S NAME]’s personal doctor or nurse? (C4Q02A)
  • 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:

Needed services? Received all needed care? Reason for not receiving care?* Received any care?
  • Well child check up:
  • (C4Q05_1) (C4Q05_1A) (C4Q05_1B) --
  • Preventive Dental Care:
  • (C4Q05_31) (C4Q05_31A) (C4Q05_31B) --
  • Other Dental Care:
  • (C4Q05_32) (C4Q05_32A) (C4Q05_32B) (C4Q05_32C)
  • Specialty care:
  • (C4Q05_2) (C4Q05_2A) (C4Q05_2B) (C4Q05_2C)
  • Prescription medications:
  • (C4Q05_4) (C4Q05_4A) (C4Q05_4B) (C4Q05_4C)
  • Physical, Occupational, or Speech Therapy:
  • (C4Q05_5) (C4Q05_5A) (C4Q05_5B) (C4Q05_5C)
  • Mental health care or counseling:
  • (C4Q05_6) (C4Q05_6A) (C4Q05_6B) (C4Q05_6C)
  • Substance abuse treatment or counseling:
  • (C4Q05_7) (C4Q05_7A) (C4Q05_7B) (C4Q05_7C)
  • Home health care:
  • (C4Q05_8) (C4Q05_8A) -- (C4Q05_8C)
  • Eyeglasses or vision:
  • (C4Q05_9) (C4Q05_9A) --- (C4Q05_9C)
  • Hearing aids or hearing care:
  • (C4Q05_10) (C4Q05_10A) --- (C4Q05_10C)
  • Mobility aids or devices:
  • (C4Q05_11) (C4Q05_11A) --- (C4Q05_11C)
  • Communication aids or devices:
  • (C4Q05_12) (C4Q05_12A) --- (C4Q05_12C)
  • Durable medical equipment:
  • (C4Q05_14) (C4Q05_14A) --- (C4Q05X14C)



    In past 12 months, was there any time when you or other family members needed the following services:

    Family needed services? Family received all needed care? Reason for not receiving care?* Family received any care?
  • Respite care:
  • (C4Q06_1) (C4Q06_1A) (C4Q06_1B) (C4Q06_1C)
  • Genetic counseling:
  • (C4Q06_2) (C4Q06_2A) (C4Q06_2B) (C4Q06_2C)
  • Mental health care or counseling:
  • (C4Q06_3) (C4Q06_3A) (C4Q06_3B) (C4Q06_3C)


    SECTION 5: Care Coordination

    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):

    SECTION 6A: Family Centered Care and Shared Decision Making

    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

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

    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

    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)
    • Do you or other family members provide health care at home for [CHILD’S NAME]? (C9Q02)
    • 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)

    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

    October 2017 CAHMI Newsletter: 2016 NSCH data now available on the interactive data query!

    October 31, 2017
    October 2017 CAHMI newsletter. In this newsletter, we announced the availability of new data from the 2016 National Survey of Children's Health on the DRC's interactive data query, along with supporting documents. We also shared the CAHMI's recent info briefs and fact sheet on ACEs and thriving, using data from the 2016 NSCH, as well as updates on the MCH-MRN.
    Data from the 2016 National Survey of Children's Health (NSCH), funded and directed by the Health Resources and Services Administration, Maternal and Child Health Bureau (HRSA/MCHB) are now available on the Data Resource Center website! National, state and child subgroup findings on key measures from the 2016 survey are now available on the DRC’s NSCH interactive data query. All Title V National Performance Measure (NPM) and National Outcome Measure (NOM) findings are available as well as findings on topics representing the range of those addressed in the 2016 NSCH: children’s physical and mental health status (including health conditions and functional difficulties); health insurance, health care access, use, and quality (e.g. medical home; transition to adult health care); family health and activities; neighborhood characteristics; and age-specific content on school and learning. Data are available at the national level for a range of child subgroups.Where sample sizes are sufficient, data are also available at the state level for child subgroups within each state. Title V measures can also be viewed across all states in our NPM and NOM hot-spotting tables. Downloadable datasets and accompanying codebooks will be available at a later date; for questions on this, please contact us at
    As you may know, there were several key changes in the administration of the 2016 NSCH. Most importantly, the 2016 NSCH represents an integration of past years of the NSCH and National Survey of Children with Special Health Care Needs. The new NSCH was also designed to be fielded annually from 2016 onward, but with smaller samples sizes each year than in prior years of the survey. Additionally, the 2016 NSCH was administered via web- and mail-based (paper) instruments, as opposed to via telephone. To assist in your use of the data, the Data Resource Center provides several “learn about the survey” documents, including:

    To learn more, look for the Maternal and Child Health Bureau’s DataSpeak webinar on the 2016 NSCH, which was held October 30, 2017. Presentations were made by:
    • Reem Ghandour, DrPH, MPA,Director of the Division of Epidemiology in the MCHB’s Office of Epidemiology and Research, on the NSCH redesign and new estimates from the 2016 NSCH.
    • Jason Fields, PhD, MPH,Survey Director at the US Census Bureau, on the data collection methodology for the latest iteration of the survey.
    • Christina Bethell, PhD, MBA, MPH, Professor at the Johns Hopkins Bloomberg School of Public Health and Director of the CAHMI and Data Resource Center, on how participants can jump start their use of the new NSCH data using the DRC website’s interactive data query tool.
    Check the DataSpeak archive for a transcript and slides from the webinar.
    We are also pleased to announce the creation of a new Title V Portal on the Data Resource Center website. This portal was created in partnership with Title V leaders to address their new and evolving needs, providing fast access to Title V measure data at both the state and national levels and extensive resources to support Title V state action plans. The portal includes easy access to all Title V NPMs and NOMs via an interactive data table, as well as US maps and hot-spotting tables, which allow users to compare their state’s performance to other states and/or the nation. We have also gathered resources to support needs assessments, development of State Performance Measures, understanding and choosing strategies to impact NPMs and NOMs, and more. Check it out and let us know what you think and how we can best meet your needs!
    Adverse Childhood Experiences (ACEs) & Possibilities to Heal and Thrive
    In collaboration with the Robert Wood Johnson Foundation (RWJF), the Children’s Hospital Association, and AcademyHealth, the CAHMI has also put together a fact sheet and issue brief on Adverse Childhood Experiences (ACEs) and positive health which incorporate data from the 2016 NSCH.
    Also available is an overview of the National Agenda to Address ACEs, recently published in Academic Pediatrics (see below for more details). These briefs were developed in conjunction with RWJF's launch of the Sesame Workshop’s “Sesame Street in Communities” initiative on helping children cope with traumatic experiences, and are part of a series of briefs that will explore ACEs along with factors that can mitigate the effects of trauma and toxic stress, including family relationships & resilience, social & emotional skills, and family-centered care.
    To learn more about ACEs and toxic stress, and how to identify and discuss them with families, please join a Nov. 15th webinar, sponsored by the American Academy of Pediatrics' National Advisory Board, with Nadine Burke Harris of the Center for Youth Wellness and the CAHMI’s Director, Christina Bethell!
    We're coming to Atlanta for the APHA 2017 Annual Meeting and Expo -- Booth #603!
    Are you interested in the NSCH and want to know how we could benefit your research, advocacy, and systems improvement work? Come meet us at the American Public Health Association’s Annual Meeting and Expo, happening November 4-8 at The Georgia World Conference Center in Atlanta, Georgia! Meet our team and ask questions about our NSCH interactive data query and other resources on our website. In addition, get more information about the 2016 National Survey of Children’s Health data (see above) and learn how you can get involved with other CAHMI projects. Our schedule of presentations and posters can be found below:
    Again, we will be exhibiting at booth #603– come say hello, ask questions, and get resources!
    Maternal and Child Health Measurement Research Network (MCH-MRN) Meeting
    The Maternal and Child Health Measurement Research Network (MCH-MRN), led by the CAHMI and funded by HRSA/MCHB, focuses on improving child and family health measurement through innovation and shared accountability.
    On August 13th-14th, 2017, the MCH-MRN's Year 1 Advisory Committee and Partners Meeting took place at the AcademyHealth offices in Washington, DC. Coordinated by the CAHMI, the meeting was attended by an interdisciplinary group of MCH stakeholders from around the country, including MCH program, policy, and advocacy leaders, funders, and thought-leaders.
    The meeting sought to determine next steps for several of the MRN’s MCH measurement resources, move forward the MRN’s Technical Working Groups, discuss how to further operationalize the MRN’s Strategic Agenda, and brainstorm dissemination opportunities. If you’re interested in joining the network or just learning more, please contact the CAHMI at
    CAHMI in the News
    In addition to the ACEs briefs mentioned above, the CAHMI, along with AcademyHealth and RWJF, led the development of an open source special issue of Academic Pediatrics, which includes 28 research papers and commentaries addressing the need and possibility to prevent, mitigate and heal the impact of ACEs, promote protective factors and policies and advance child and family well-being in the U.S. CAHMI staff also authored papers for the special issue on a national agenda to address ACEs and an assessment of the state of tools used to evaluate ACEs.
    As part of their State of Obesity project, the Robert Wood Johnson Foundation profiled 2016 NSCH national and state data on youth who are overweight & obese.This took place in conjunction and partnership with the CAHMI's release of this data on the DRC website in early September as part of the Title V measures release with MCHB. Data show that roughly 3 out of 10 children age 10-17 are overweight or obese, with seven states having rates exceeding 35%. These data received coverage both nationally and in local newspapers from over 15 states.
    News from Our Partners
    The Association of Maternal & Child Health Programs (AMCHP)
    is proud to announce the release of the Title V Data Integration toolkit, a collection of resources that aims to assist states as they integrate Title V data into Early Childhood Integrated Data Systems. The toolkit consists of three types of resources: Title V Data Integration Tip Sheets, Title V Data Integration Use Cases, and State Examples.Learn more. AMCHP also recently created an issue brief in partnership with the National Institute for Children’s Health Quality called “Early Childhood Developmental Screening and Title V: Building Better Systems.”
    Additionally, AMCHP just released a new interactive website for the National Standards for the National Standards for Systems of Care for Children and Youth with Special Health Care Needs, Version 2.0. This tool strives to serve the nation’s 14.2 million children and youth with special health care needs. Version 2.0 of the National Standards for Systems of Care for Children and Youth with Special Health Care Needs sets the core components for the structure and process of effective systems of care while streamlining content for easier use by states and stakeholders. Visit the website here.
    If you're heading to APHA,
    check out the full day pre-conference Learning Institute course on “How to Evaluate Public Health Programs.” The purpose of this workshop is to equip public health professionals, particularly those working at the local and/or community level, with the essential knowledge and skills needed to evaluate public health programs. View the Learning Institute Course descriptions to learn more, and then register to participate.