Child Development

National and Multi-State Datasets Related to Developmental Screening

Last updated: 5-22-03

DS: Developmental Screening DA: Developmental Assessment

The introduction paragraph contains the purpose of the dataset, the data it collects, and the method of data collection.

1. American Academy of Pediatrics (AAP) Periodic Survey of the Fellows:
   This survey is designed to tap pediatricians' attitudes and practices on a wide range of current child health topics. In the 2002 survey, questions were asked about: the frequency of their use of an array of methods or tools for identifying children, birth through 35 months, at risk for developmental delays or problems, the exact method used (including screening tool used) for identifying these children, the type of provider who does the majority of formal developmental screening, and issues relating to early intervention services (we have the report of this data from an AAP meeting, even though it hasn’t been released).

   • Population and sample: A sample of active US members of the AAP, approximately 1600, (response rate of ~60% for most surveys)

   • Funded by: AAP

   • Administered by: AAP

   • Periodicity: Three or four surveys per year

   • Its findings related to DS:

     1. Content of health supervision services to children from birth to 35 months of age (3/00 - 8/00):
        “Pediatricians reimbursed predominantly by Medicaid and those who serve minority families and practice in urban cities are less likely to refer families to several community-based health services.”
        “Providers with more managed care patients were more likely to emphasize time limitations to PS (psychosocial screening). Providers with privately insured patients emphasized reimbursement issues, as well as unfamiliarity with PS instruments.”
        “Pediatricians report they spend about 18 minutes on well child visits with young children. Health supervision is focused on traditional pediatric topics (eg, nutrition, immunizations, and safety). Less time is spent on developmental and psychosocial issues (eg, reading, parent functioning).”

     2. A Comparison of Barriers to the Provision of Developmental Assessments and Psychological Screening During Pediatric Health Supervision (5/01)
        65% reported inadequate training in DA and 64% reported insufficient time to conduct DAs

     3. Graduate Medical Education and Continuing Medical Education Experiences of pediatric generalists (5/98 - 9/98):
        Few gave high ratings to their training in developmental/behavioral (30.5%) or preventive medicine (13.8%). Also, areas of residency training rated as “poor” include learning disabilities (37.4%).

     4. Management/referral of children with mental health problems (PROS) (7/95 - 11/95):
        “Overall, 31% of pediatricians reported experiencing denial of referrals in a year; this proportion was lowest for those in multi-specialty groups (20%) and highest for single specialty practices (36%;p<.01). Of those with denied referrals, respondents in multi-specialty groups were more likely to rate the appeals process positively (22% very good or excellent vs 0% solo, 6% single specialty, 3% hospital-based physicians; p<.0001).

     5. Preventive health care services in pediatric practice (ODPHP, Public Health Service, Healthy People 2000 objectives) (11/91 - 3/92):
        “The survey indicates the majority of physicians queried routinely assess over 60 percent of their patients for most preventive care topics. 87% reported routinely evaluating the majority of patients for motor development, 82% did so for cognitive development and 80% do so for speech development. 70% provide treatment or referral to specialists for motor development problems to over 60 percent of patients who need the service. Sixty-eight percent do so for cognitive development and 72 percent do so for speech development problems.”
        “More than three-fourths (77 percent) said they routinely inquire or observe the parent-child relationship of more than 60 percent of their patients”
        “Patients in need of treatment of “parent-child interaction problems” are counseled or referred by 58 percent of pediatricians surveyed.”

   • Data availability: Currently data from the 1990 and 2000 survey that asked about DS are available. The results of a 2002 survey on DS are not yet available but will be coming out this year and next year. Access to this data will not be available soon because they are analyzing it.

   • Additional comments: Surveys are extensively reviewed by practicing pediatricians for terminology and each one is pilot tested with a random sample of members.

   • Website: http://www.aap.org/research/surv1.htm
      

2. Child Health Insurance Research Initiative (CHIRI™):
   This initiative is comprised of nine projects, funded in 1999, related to public child health insurance programs and health care delivery systems. Results from CHIRI™ will aid in understanding how to improve health care for vulnerable children, including children who remain uninsured, and how to improve the institutions that serve them. Two of its projects use national data, one of which uses the Medicaid-Managed Care Organization and S-CHIP contracts database to compare terms of the contracts of free-standing SCHIP to those for children covered by Medicaid. The other national project is on the relationship between characteristics of publicly funded programs, such as Medicaid managed care and S-CHIP, and the survival/financial viability of pediatric safety net providers (PSNP). This project also examines ways in which different PSNP’s have dealt with the evolving Medicaid and S-CHIP programs.

   • Population and sample: Low income children

   • Funded by: The Agency for Healthcare Research and Quality (AHRQ), The David and Lucile Packard Foundation, and The Health Resources and Services Administration (HRSA)

   • Administered by: The database for the contracts study is maintained by the Center for Health Services Research and Policy at George Washington University. The other study on PSNP’s is implemented by Northwestern University.

   • Periodicity: One time studies

   • Its findings related to DS: The Findings are more related to differences in ways of implementing S-CHIP, in relation to Medicaid.

   • Data availability: The results of the first study using contracts have been out since September of 2002. The study on PSNP’s was scheduled to end in March 2003.

   • Additional comments: The remaining CHIRI™ projects that are relevant are in the following states: Michigan (Analysis of Fee-For-Service vs. Managed Care for Children With Special Health Care Needs), Alabama and Georgia (Provider Participation and Access in Alabama and Georgia), Oregon (Medicaid SCHIP vs. Premium Subsidy: Oregon's Health Insurance Alternatives for Low-Income Children), Kansas (Evaluation of Kansas Health Wave), Indiana (Health Care Access, Quality and Insurance for Children With Special Health Care Needs), and New York (New York's SCHIP: What Works for Vulnerable Children).

   • Website: http://www.ahcpr.gov/about/cods/chiriproj.htm
      

3. Community Tracking Study Household and Physician Surveys:
   This is a large-scale longitudinal investigation of health system change in the US and the ways in which hospitals, health plans, physicians, safety net providers, and other provider groups are restructuring their health systems, as well as the forces driving the organizational change. In addition, it tracks health insurance coverage, access to care, use of health services, health care costs, and perceived quality of health care. It is designed to track a cohort of American communities at two-year intervals beginning in 1996, through surveys to patients or the parents of patients, physicians, and employers, as well as through site visits to 12 out of 60 study sites.

   • Population and sample: Sixty randomly selected sites (51 metropolitan areas and 9 nonmetropolitan areas) for the core the study and to be representative of the nation as a whole, ~60,000 and ~12,000 surveys are administered to households and physicians, respectively, from the 60 sites, as well as from a supplemental national sample, 12 sites (metropolitan areas with more than 200,000 people) are being studied in depth

   • Funded by: The Robert Wood Johnson Foundation (RWJF)

   • Administered by: Center for Studying Health System Change and others (e.g. Health and Medical Care Archive (HMCA)/Inter-university Consortium for Political and Social Research (ICPS) at the University of Michigan)

   • Periodicity: Biennially

   • Its findings related to DS:

     1. Kataoka SH. Zhang L. Wells KB. Unmet need for mental health care among U.S. children: variation by ethnicity and insurance status. American Journal of Psychiatry. 159(9):1548-55, 2002 Sep.
        Findings: “In a 12-month period, 2%-3% of children 3-5 years old and 6%-9% of children and adolescents 6-17 years old used mental health services…findings reveal that most children who need a mental health evaluation do not receive services and that Latinos and the uninsured have especially high rates of unmet need relative to other children. Rates of use of mental health services are extremely low among preschool children.”

     2. Strunk BC. Reschovsky JD. Working families' health insurance coverage, 1997-2001. Tracking Report. (4):1-4, 2002 Aug.
        Findings: “While the State Children's Health Insurance Program (SCHIP) clearly reduced uninsurance among low-income children, evidence also suggests a fair amount of substitution of public insurance for private coverage.”

     3. Strunk BC. Cunningham PJ. Treading water: Americans' access to needed medical care, 1997-2001. Tracking Report. (1):1-6, 2002 Mar.
        Findings: “From 1997-2001 children's ability to get needed care improved”

     4. Minkovitz CS. O'Campo PJ. Chen YH. Grason HA. Associations between maternal and child health status and patterns of medical care use. Ambulatory Pediatrics. 2(2):85-92, 2002 Mar-Apr.
        Findings: “ Associations in health service use were noted across a broad array of services for women and their children. These associations may reflect similar tendencies to seek care and suggest the need to consider patterns of maternal use in trying to understand and improve patterns of health care utilization for children.”

     5. Cunningham PJ. Targeting communities with high rates of uninsured children. Health Affairs. Suppl:W20-9, 2002.
        Findings: “…coverage expansions through the State Children's Health Insurance Program (SCHIP) have virtually eliminated differences across communities in children's eligibility for public or private health coverage. Nevertheless, some communities continue to have very high rates of uninsured children, in large part because of lower participation rates in public programs and higher costs for employer-sponsored coverage.”

   • Data availability: Data collection for Household Survey (1996-1997and 1998-1999) and Followback Survey (1997-1998 and 1998-2000) are available. They added the CSHCN screener to the household survey; data from this survey should be available in public use files in 2005.

   • Website: http://www.hschange.com/index.cgi?data=01  and http://www.icpsr.umich.edu/HMCA/cts.html
      

4. Early Childhood Longitudinal Study (ECLS): Birth Cohort
   The ECLS study has two overlapping cohorts: a Birth Cohort (BC) and a Kindergarten Cohort. While the birth cohort will follow a sample of children from birth through the first grade, the kindergarten cohort will follow a sample of children from kindergarten through the fifth grade. The BC is a new study that provides detailed information on children's development, health, early care, and education. Information is collected by trained evaluators, who assess children and question their primary caregivers in the homes. Also, fathers are asked to complete a self-administered questionnaire, child care providers are contacted and interviewed over the telephone, and observations are conducted for a subsample of the child care settings children attend.

   • Population and sample: For the ECLS-BC, the study follows a nationally representative sample of approximately 13,500 children born in 2001 from 9-months of age through the first grade.

   • Funded by: U.S. Department of Education, National Center for Education Statistics (NCES), in collaboration with several health, education and human services agencies.

   • Administered by: U.S. Department of Education, NCES

   • Periodicity: Children are followed from birth through first grade, information is collected at 9-, 24-, 48-months and in kindergarten and first grade.

   • Its findings related to DS:

   • Data availability: NCES plans to release data from ECLS-B for the first time in the fall of 2003. This will include data collected at 9 months from the parent interviews, child assessments, and father questionnaires. Other data will be released 1 year after completion of data collection.

   • Website: http://nces.ed.gov/ecls/
      

5. The Annual Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Report:
   This report contains data on the number of children participating in the EPSDT program, Medicaid’s comprehensive and preventive child health program. It combines data from the Medicaid agencies of all states that supervise or administer EPSDT. For each state it documents the number of children eligible for EPSDT services and those receiving EPSDT services. These services include child health screening, dental care, and referral for corrective treatment. Child health screening services are defined as initial or periodic screens that are required according to each state's screening periodicity schedule. Screening services must include all of the following: comprehensive health and developmental history (including assessment of both physical and mental health development), comprehensive unclothed physical exam, appropriate immunizations, and laboratory tests.

   • Population and sample: Medicaid recipient under the age of 21years, data is based on ~21 million, this is ~23% of all children under 18 years and ~30% of children under 6 years (~65% of poor children under 18 years and ~73% of poor children under age 6; 1995 Census data)

   • Administered by: Centers for Medicare and Medicaid Services

   • Periodicity: Annual

   • Its findings related to DS:

     1. Schneider KM. Wiblin RT. Downs KS. O'Donnell BE. Methods for evaluating the provision of well child care. [Evaluation Studies. Journal Article] Joint Commission Journal on Quality Improvement. 27(12):673-82, 2001 Dec.
        Findings: “Administrative data may underestimate the performance of EPSDT visits in comparison to medical record review. In addition, having a claim for an EPSDT visit did not necessarily mean the child received the basic components of a well child exam. The methodology for performance indicators used to evaluate health plans should be carefully validated.”

     2. Richardson LA. Selby-Harrington M. Krowchuk HV. Cross AW. Quade D. Health outcomes of children receiving EPSDT checkups: a pilot study. Journal of Pediatric Health Care. 9(6):242-50, 1995 Nov-Dec.
        Findings: “Checkups uncovered fewer problems than would be expected in a poor, largely minority population. Almost one third of the children referred for specialty care apparently did not receive such care. The study verified the need for further research and provides direction for future study.”

     3. Richardson LA. Selby-Harrington ML. Krowchuk HV. Cross AW. Williams D. Comprehensiveness of well child checkups for children receiving Medicaid: a pilot study. Journal of Pediatric Health Care. 8(5):212-20, 1994 Sep-Oct.
        Findings: “This pilot study of the medical records of 76 children receiving EPSDT checkups in six rural counties in North Carolina provided a preliminary assessment of whether EPSDT checkups included the required components. The study showed that health care providers frequently did not provide adequate documentation of the care provided at the checkup, and it raised questions as to whether children received the required components of the EPSDT checkup.”

   • Data availability: Currently data up to 1998 at the national level and up to 1999 at the state level.

   • Website: http://cms.hhs.gov/medicaid/epsdt/default.asp
      

6. EPSDT Chart Review
   This study is a focused review of contracted MCO’s in five states. It studies the structure and process of care and the quantity and quality of visits, based on provider documentation at well child visits. It has quality information by state, region, plan, ABCD county, and child characteristics (gender and race). It measures provider performance in meeting expected number of visits and quality of visits. The criteria for a complete well-child visit includes: a history, a physical, and height and weight measures; a developmental/ behavioral screen; mental health screen; and a health education/anticipatory guidance screen. Data is collected on 3 age groups: birth to 15 months, 3-6 years, and 12-20years.

   • Population and sample: contracted MCO’s

   • Additional comments: information above is based on a presentation on the web site below

   • Website: http://www.uic.edu/sph/cade/amchp2001/ppt/session4/session4b/sld031.htm
      

7. Health Plan Employer Data and Information Set (HEDIS):
   HEDIS is a set of standardized performance measures designed to allow for the comparison of managed health care plans. It includes data on types of services provided by healthcare providers (Medicare, Medicaid, and commercial), such as the number of well-child visits covered, through collecting information from administrative sources and medical charts. It also administers surveys, such as the Consumer Assessment of Health Plans (CAHPS) Expanded Child Survey, which has many of the same questions as NS-CSHCN. This CAHPS survey also asks consumers if their children (0-12) were assessed for any number of chronic conditions.

   • Population and sample: Those in Managed Care Organizations (MCO’s) (~62% of US children, age 0-17, use MCO’s; AHRQ data from MEPS Household Survey, 2000), sample is ~8000

   • Funded by: National Committee for Quality Assurance

   • Administered by: National Committee for Quality Assurance

   • Periodicity: Annually

   • Its findings related to DS:
     Kuhlthau K. Walker DK. Perrin JM. Bauman L. Gortmaker SL. Newacheck PW. Stein RE. Assessing managed care for children with chronic conditions. Health Affairs. 17(4):42-52, 1998 Jul-Aug.
     “We propose four steps to strengthen the applicability of HEDIS to children with chronic conditions: (1) develop methods of identifying and monitoring groups of children with chronic conditions; (2) report HEDIS indicators for these children separately from those for other children; (3) develop and implement consumer and provider surveys that elicit information specific to these populations; and (4) develop specific structure, process, and outcomes indicators for children with chronic conditions.”

   • Data availability: Available by request (via submitting research proposal and agreeing to contract that doesn’t allow for public access) and through a fee.

   • Additional comments: HEDIS, in collaboration with the American Diabetes Association, has a system that recognizes physicians who treat patients with diabetes who apply for recognition and pass a standard of care. A random sample of their patient’s charts is reviewed for the process.

   • Website: http://www.ncqa.org/Programs/HEDIS/index.htm
      

8. Kids Count Census data
   This is a national and state-by-state effort to track the status of children in the U.S. It provides benchmarks for child well-being by providing population data on: income and poverty, parental employment, education, language, disability (for those aged 5 to 15years), neighborhood characteristics, and living arrangements, as well as age, gender, race and ethnicity. The profiles for these characteristics can be seen by: nation, state, large city, county, American Indian/Alaska Native/Hawaiian Home Land, Consolidated Metropolitan Statistical Area, Metropolitan Statistical Area, Primary Metropolitan Statistical Area, Congressional district (for the 108th congress), and New England Town. Data is collected through the Census Short Form (for age, gender, households, families, and housing units data) and the Census Long Form (for social, economic, and housing data).

   • Population and sample: 108 Congressional Districts

   • Funded by: Annie E. Casey Foundation

   • Administered by:

   • Periodicity: Was done in 1990 and in 2000

   • Its findings related to DS:
     O'Hare WP. Ritualo AR. KIDS COUNT: identifying and helping America's most vulnerable. Statistical Bulletin - Metropolitan Insurance Companies. 81(1):26-32, 2000 Jan-Mar.
     Findings: “The focus of the 1999 KIDS COUNT Date Book is on the 9.2 million children who have been identified as "high risk." These children have four or more family disadvantages that put them at greater risk of experiencing poor outcomes. These kids are not benefiting from the continuing economic boom in the 1990s. The District of Columbia, Louisiana and Mississippi had the largest share of high-risk kids, ranging from 39 to 21 percent of their respective populations, and Utah the lowest, with just 5 percent. Long-term family-centered strategies that are multi-dimensional and community-wide are recommended to help promote family change.”

   • Data availability: Data is available to public

   • Website: http://www.aecf.org/kidscount/census/
      

9. National CAHPS® Benchmarking Database (NCBD)
   This is the national repository for data from the CAHPS family of surveys, which ask consumers of health care about the amount and quality of services provided to them by health plan organizations such as state Medicaid agencies, State Children's Health Insurance Programs (SCHIP), public and private employers, individual health plans, Medicare, and the Department of Defense. The NCBD also provides data for benchmarking (i.e. making comparisons to reference points such as national and regional averages). Yet, the primary purpose of the NCBD is to facilitate comparisons of CAHPS survey results by survey sponsors (health plans), enabling purchasers and health plans to compare their own results to relevant national benchmarks. The content of the CAHPS survey that is related to children is very similar to that for the survey used for the NS-CSHCN.

   • Population and sample: The consumers of health services provided by organizations that participate in the NCBD, all organizations that administer their surveys according to CAHPS specifications are welcome to participate in the NCBD free of charge, the 2002 database holds survey results for over 360,000 adults and children enrolled in Commercial, Medicaid, SCHIP, and Medicare plans (therefore, MCO’s).

   • Funded by: Agency for Healthcare Research and Quality (AHRQ)

   • Administered by: Westat and Shaller Consulting, with a formal NCBD Advisory Group of representatives from survey sponsor organizations and other groups with an interest in the NCBD for oversight and direction

   • Periodicity: It is done annually

   • Its findings related to DS: Since the data on children from the CAHPS 2.0 survey is very similar to that in survey for NS-CSHCN, there is no information in the survey about developmental screening or the method of identification of children’s disability.

   • Data availability: NCBD was initiated in 1998, there are data on 5 years, the data collection period for the 2001-2002 data was from 9-2001 to 7-2002, the report for this data was published in 9-2002

   • Additional comments: J Lee Hargraves (Mathematica Research Corporation) did a study on the psychometric properties of CAHPS 2.0 reporting composites for adult and child surveys for Medicaid and Commercial populations. The paper is in submission.
     AHRQ has added CAHPS questions to its Medical Expenditure Panel Survey, 6,500 parents, to assess parents’ experience with their children’s health care.

   • Website: http://ncbd.cahps.org/Home/Index.asp
      

10. National Early Intervention Longitudinal Study (NEILS):
    This is a longitudinal study on a sample of Part C recipients (children with disabilities or at risk for disabilities) and their families, which follows participants through their experiences in early intervention and into early elementary school. Through telephone interviews and mail surveys, it collects information on the characteristics of children and families, the services they receive, and the outcomes they experience.

    • Population and sample: A nationally representative sample of 3,338 children between birth and 31 months, who began early intervention services for the first time between September 1997 and November 1998, and their families, from 20 states (60% of Part C recipients), sample families were recruited in 3 to 7 counties in each of the 20 states

    • Funded by: Office of Special Education Programs, US Department of Education

    • Administered by: Stanford Research Institute (SRI) International is administering the mail surveys through a cooperative agreement with the Department of Education

    • Periodicity: Study began in 1997 and expected to last until 2003-2004, data for short-term outcomes are collected annually, until participant’s third birth day. Long-term outcomes data are collected after the child has left early intervention, at 36months and/or in KG

    • Its findings related to DS:
      Source: 22nd Annual Report to Congress, Section IV
      Findings:

      • More children entered early intervention in the first and third year of life, than in the second.

      • The most frequently reported reason for receiving early intervention was speech/communication impairment or delay (41%).

      • Other frequently reported reasons for receiving early intervention included prenatal/perinatal problems (19 percent), with the most frequent of these being low birth weight (11 percent of children in early intervention), motor delays (17 percent), and an overall delay in development (12 percent).

      • Reasons for eligibility for early intervention can be examined through grouping into three eligibility categories in IDEA. This shows that most children were eligible for early intervention because of a developmental delay (64%), a lesser proportion had a diagnosed condition (20%), and far fewer were being served because they were at risk (16%).

    • Data availability: Data collection is scheduled to end in spring 2005 and data will only be made available for analysis after that. As for the release of results: the shortest of the short term outcomes (at 1 year) were described in the 24th Annual Report to Congress, which is expected to be released shortly. The results of the 36 months outcomes should be released by the end of the year and the kindergarten outcomes will take a few more years.

    • Website: http://www.sri.com/neils/             
                                

11. NEILS Program Expenditure Study
    This survey will provide an estimate of the total expenditures of early intervention (EI) services for children, birth through age three, and their families, as provided under Part C. This information will be combined with that of EI outcomes, to explore the relationship between EI expenditure and EI outcomes (when children are 36 months). The 4 major research questions of the study are on: the amount spent on EI services in the U.S., the per child spending variation as a function of child and family characteristics, the patterns of these expenditure variations across different states, and how these relate to state and local policy differences.

    • Population and sample: A total of 159 early intervention agencies and programs
      • Funded and administered by: A collaboration between SRI International and American Institutes for Research for the Office of Special Education Programs, U.S. Department of Education

    • Periodicity: One time study

    • Data availability: Collected data in 2001 and now in analysis stage

    • Website: http://www.sri.com/neils/expend.html
       

12. National Household Education Surveys Program (NHES):
    This is a data collection system that is designed to address a wide range of education-related issues, such as adult education and lifelong learning, early childhood program participation, parent and family involvement in education, before- and after-school programs and activities, civic involvement, household library use, school readiness, and school safety and discipline. Each of these 8 topics has a separate survey.

    • Population and sample: US population, 7, 000 to 14, 000 have been surveyed for the early childhood program participation and the school readiness surveys (depending on the year).

    • Funded and administered by: National Center for Education Statistics (NCES)

    • Periodicity: Every 2-3 years, the next data collection period will be in 2005 and will include the early childhood program participation survey

    • Its findings related to DS:
      Source: Beasley, T. Mark. Influence of culture-related experiences and sociodemographic risk factors on cognitive readiness among preschoolers. Journal of Education for Students Placed at Risk (Jespar). Vol 7(1) 2002, 3-23. Lawrence Erlbaum, US
      Findings: “A national sample of 1,710 4-yr-old preschoolers extracted from the 1993 National Household Education Survey (National Center for Education Statistics) was analyzed to investigate factors that influence cognitive readiness. Results indicated that exposure to culture-related activities may ameliorate the absence of a center-based program for low-risk children. For children typically considered to be 'at risk', culture-related experiences were associated with (1) higher levels of cognitive development, regardless of program attendance and (2) lower variability in cognitive readiness. This suggests that culture-related activities are potentially more beneficial for at-risk children with initially lower levels of cognitive readiness. Results also suggest that parental involvement is more likely to enhance a child's cognitive development when the activities consist of culture-related activities. This may be attributed to culture-related activities being better ways to enhance the cognitive skill of a child, or a lack of such activities in center-based programs.”

    • Data availability: Data from the early childhood program participation survey is available for 1991, 1995, 1999, 2001 and data for the school readiness survey is available for 1993 and 1999

    • Website: http://nces.ed.gov/nhes/Main/schlread.asp
       

13. National Health Interview Survey (NHIS)
    The purpose of this survey is to provide national estimates of a broad range of health measures. Data are collected during personal household interviews, on: personal and demographic characteristics, illnesses, injuries, impairments, chronic conditions, activity limitation caused by chronic conditions, utilization of health services, and other health topics. Each year the survey is reviewed and special topics are added or deleted. For most health topics, the survey collects data over an entire year. To collect information on children, one child is randomly chosen in the household and data is collected from an adult family member residing in the household who is familiar with the child’s health. Measures for children under 18 include: asthma, allergies, learning disabilities, ADD, days of school missed, respondent assessed health status, usual place of medical care, time since last contact with a healthcare professional, selected health care risk factors, and more health topics related to the Healthy People 2010 objectives.

    • Population and sample: The civilian non-institutionalized population of the US, over sampled for those black and Hispanic, in 2000 data was collected on 100,618 persons of which 28,495 were children 0-17 years of age, the response rate for the ongoing part of the survey has been between 94 and 98% over the years

    • Funded and administered by: National Center for Health Statistics, CDC

    • Periodicity: Annually, has been conducted since 1975, with major revisions made to it every 10-15 years, the last was made in 1997, (each year special topics are added and deleted)

    • Its findings related to DS:
      No. 208. Summary Health Statistics for U.S. Children: National Health Interview Survey, 1998. 53 pp. (PHS) 2002-1536.
      Findings: In 1998 for children under 18 years 84% were in excellent or very good health, but 12% had no health insurance and 6% did not have a usual place of medical care. For children from age 3 to 17 years an estimated 8% had a learning disability and an estimate 6% had ADD.
      Larson SA. Lakin KC. Anderson L. Kwak N. Lee JH. Anderson D. Prevalence of mental retardation and developmental disabilities: estimates from the 1994/1995 National Health Interview Survey Disability Supplements. American Journal of Mental Retardation. 106(3):231-52, 2001 May.
      Findings: “In our analyses, we estimate the prevalence of mental retardation in the noninstitutionalized population of the United States to be 7.8 people per thousand (.78%); of developmental disabilities, 11.3 people per thousand (1.13%); and the combined prevalence of mental retardation and/or developmental disabilities to be 14.9 per thousand (1.49%).”
      Simpson G. Bloom B. Cohen RA. Parsons PE. Access to health care. Part 1: Children. Vital & Health Statistics - Series 10: Data From the National Health Survey. (196):1-46, 1997 Jul.
      Findings: “In 1993, over 7.3 million U.S. children had at least one unmet health care need or had medical care delayed because of worry about the cost of care. These health care needs included medical care, dental care, prescription medicine, glasses, and mental health care. In addition, almost 4.2 million children lacked a regular source of health care. Factors related to access indicators included health insurance, family income, race and/or ethnicity, family structure, and place of residence. The lack of health insurance or inability to afford care was the main reason given by respondents for children lacking a regular source of medical care.”

    • Data availability: In 2002 the summary statistics were published for data for 1998. The dataset for 2001 is available.

    • Website: http://www.cdc.gov/nchs/nhis.htm
       

14. National Longitudinal Survey of Youth (NLSY) -Child Supplement:
    In 1979, the Department of Labor initiated the NLSY, a longitudinal survey that assesses the educational, training, employment, and family experiences of a national sample of 12,686 men and women aged 14-21. In 1982, the National Institute of Child Health and Human Development (NICHD) began funding the survey and expanded data collection on fertility, pregnancy, and child care. In 1986, with support from NICHD and private foundations, an intergenerational component was added to the survey, which includes the administration of an extensive set of instruments assessing the development of children of the female respondents (e.g. Home Observation for Measurement of Environment (HOME), which is useful for predicting later cognitive, social, and physical development, a set of Temperament scales, and the Behavior Problems Index). The cognitive materials for younger children consist of tests like body part identification or location memory. Information was also collected on well-baby care during the first year of life. Starting in 1994, adolescents age 15 and over, who were previously assessed with the child development measures, were given a questionnaire similar to the one their parents were given in 1979. Data is collected through questionnaires, interviews, and direct assessment. However, for now NICHD has chosen not to fund data collection for children born after the 2000 survey, through the Child Supplement (e.g. child assessments

    • Population and sample: children born to the female respondents of the 1979 NLSY, 4,438 children and 3,885 young adults (in 2000), there is overrepresentation of those black, Hispanic, and economically disadvantaged nonblack/non-Hispanic, after applying the child sampling weights this sample is nationally representative of the children born to women who were born from 1957 to 1964 and were living in the United States in 1978

    • Funded by: NICHD and private foundations

    • Administered by: Department of Labor, Bureau of Labor Statistics

    • Periodicity: Biennially (since 1994)

    • Its findings related to DS:
      Guo G. Harris KM. The mechanisms mediating the effects of poverty on children's intellectual development. Demography. 37(4):431-47, 2000 Nov
      Findings: “We produce two main findings. First, the influence of family poverty on children's intellectual development is mediated completely by the intervening mechanisms measured by our latent factors (cognitive stimulation, parenting style, physical environment, child's ill health at birth, and ill health in childhood). Second, our analysis points to cognitive stimulation in the home, and (to a lesser extent) to parenting style, physical environment of the home, and poor child health at birth, as mediating factors that are affected by lack of income and that influence children's intellectual development.”

    • Data availability: Data for 2002 should be available now or soon. Maybe in the process of formulating questions for the 2004 survey.

    • Website: http://www.bls.gov/nls/nlsy79ch.htm
       

15. National Survey of American Families (NSAF)
    This survey focuses on economic health and social characteristics of children and adults under 65 and their families. It is part of a larger project, Assessing the New Federalism, on the selection and implementation of states’ policies for social programs, particularly those for low-income populations. Although NSAF contains data from all states, 13 states were over-sampled to obtain reliable measures at the state level, for comparison of study outcomes on child, adult, and family well-being across some states. Applying this data to the larger project, these outcomes can be studied in relation to the selection and implementation of policies by some states.

    • Population and sample: Non-institutionalized, US civilian population under age 65, oversampled in 13 states (Alabama, California, Colorado, Florida, Massachusetts, Michigan, Minnesota, Mississippi, New Jersey, New York, Texas, Washington, and Wisconsin; more than half the nation's population), over 44,000 households and over 100,000 individuals

    • Funded by: Urban Institute and Child Trends

    • Administered by: Westat

    • Periodicity: Thus far, there have been three rounds of the survey, in 1997, 1999, and 2002.

    • Its findings related to DS:
      Long SK. Coughlin TA. Access and use by children on Medicaid: does state matter?.Inquiry. 38(4):409-22, 2001-2002 Winter.
      Findings: “We find significant differences in access and use across the states for children on Medicaid. The characteristics of the children and their local health care environment explain some, but not all, of the state differences in access and use.”

    • Data availability: Open to public, can be downloaded from the website at no charge, each self-extracting file contains the data in ASCII format, a SAS read-in statement, a description file, a codebook in PDF format, and a readme file

    • Website: http://www.urban.org/Content/Research/NewFederalism/NSAF/Overview/NSAFOverview.htm  and http://newfederalism.urban.org
       

16. National Survey of Children with Special Health Care Needs (NS-CSHCN):
    The primary goal of this survey was to assess the prevalence and impact of special health care needs among children in the US. Data are collected, through the State and Local Area Integrated Survey (SLAITS), on the extent to which children with special health care needs (CSHCN) have medical homes, adequate health insurance, and access to needed services, as well as their care coordination and satisfaction with care. For uninsured children from low-income households, information about parents’ awareness of and experience with Medicaid and State Children’s Health Insurance Program (SCHIP) is also collected.

    • Population and sample: 750 CSHCN and at least 2700 non-CSHCN per state and District of Columbia

    • Funded by: Maternal and Child Health Bureau of the Health Resources and Services Administration and Office of the Assistant Secretary for Planning and Evaluation of the Department of Health and Human Services

    • Administered by: National Center for Health Statistics, CDC

    • Periodicity: Study has been conducted once in 2000-2002, not certain if will do again

    • Its findings related to DS: None particularly relevant to DS

    • Data availability: Data have been made available to the public

    • Website: http://www.cdc.gov/nchs/about/major/slaits/cshcn.htm
       

17. National Survey of Children’s Health
    This study surveys the physical and emotional health and well-being of children. Data is collected on medical homes, family interactions, parental health, school and after-school experiences, and safety in neighborhoods. It is administered through SLAITS.

    • Population and sample: ages 0-17 years of age, 102,000 children (2,000 per state and DC)

    • Funded by: Maternal and Child Health Bureau of the Health Resources and Services Administration

    • Administered by: National Center for Health Statistics, CDC

    • Periodicity:

    • Its findings related to DS:

    • Data availability: Data will be collected in 2003, with National and State-level estimates available in late 2004.

    • Website: http://www.cdc.gov/nchs/about/major/slaits/nsch.htm
       

18. National Survey of Early Childhood Health (NSECH)
    This dataset provides information on pediatric care at the national level, from parent’s perspective. Parents are surveyed, through the State and Local Area Integrated Survey (SLAITS), about their experiences with their child’s health provider (e.g. pediatrician, family practitioner, pediatric nurse practitioner) and the ways they keep their children healthy at home. Data is collected on: the concerns of parents and the health care needs of young children, whether these parental concerns and needs are being addressed when children visit health care providers, the quality of developmental and psychosocial care that young children receive, the factors associated with the receipt of better quality and more comprehensive pediatric care, the prevalence of selected home health behaviors in early childhood, and the relationship between parental/home health behaviors and experiences with pediatric health care delivery.

    • Population and sample: Parents of a national sample of children ages 4-35 months, parents of African-American and Hispanic children were over sampled, and the sample size is 2,068.

    • Funded by: Major funders were American Academy of Pediatrics (AAP), through grants from Gerber Foundation and AAP Friends of Children Fund, as well as the Maternal Child Health Bureau and Health Resources and Services Administration.

    • Administered by: National Center for Health Statistics

    • Periodicity: once, thus far, data was collected from February to July 2000, it was a one-time survey

    • Its findings related to DS:
      Halfon N, olson L, Inkelas M, et al. Summary statistics from the National Survey of Early Childhood Health, 2000. National Center for Health Statistics. Vital Health Stat 15(4). Forthcoming.
      Findings: Parents of about 45% of children aged 4-35 months reported that a developmental assessment was done on their child and 35% reported that a healthcare provider asked their child to pick up small objects or do related tasks, suggesting that a developmental assessment was being done.

    • Data availability: The summary of statistics report was published and data made available in 2002

    • Website: http://www.cdc.gov/nchs/about/major/slaits/nsech.htm
       

19. National Survey of Supplemental Security Income Children and Families (NSCF)
    This survey is collecting data on children with disabilities and their families who are receiving or have applied for Supplemental Security Income (SSI). The questionnaire asks about children’s health status and functional limitations, health care utilization, health insurance coverage, receipt of services, and SSI experience, in addition to the socioeconomic status of households and housing characteristics. This information will be useful for policymaking and program planning, as well as researchers interested in children’s health and disability issues. This survey is administered through computer-assisted telephone and personal interviewing techniques.

    • Population and sample: Children with disabilities and their families who are receiving or have applied for Supplemental Security Income (SSI), sample is 9,900 children and young adult

    • Funded by: Social Security Administration for policymaking and program planning

    • Administered by: Mathematica Policy Research

    • Periodicity: Hasn’t been done in 20 years, it’s a two year project, currently collecting data

    • Its findings related to DS:

    • Data availability:

    • Website: http://www.mathematica-mpr.com/3rdLevel/survdisabledchil.htm
       

20. Nuestros Niños/Our Children, National Survey of State Administrators:
    Nuestros Niños/Our Children is a three-year research project that seeks to examine how well early childhood and intervention programs are meeting the educational and linguistic needs of Latino children (birth to 5) and their families. It also seeks to identify emerging policies and practices to support these efforts. The national survey is one of its three components. The other two components are interviews with early childhood professionals, administrators, and Latino parents from three states (Florida, North Carolina, and Washington), and classroom observations in programs that enroll Latino children and families from these three states. The national survey collects data on: 1)the percentage of young Latino children and families enrolled in early childhood programs and the percentage of Latino parents in these programs whose primary language is Spanish, 2) the factors that serve as challenges or barriers to serving young Latino children and families in early childhood programs such as the affordability and accessibility of services or families' lack of familiarity with early childhood services, 3) the ways in which states have responded to the unique needs of young Latino children and families through such efforts as outreach activities, referrals to other community agencies, and professional development activities, and 4) the emerging policies and practices to support young English language learners with respect to language development and literacy, assessment, parent involvement, diversity education, and school readiness. It is being administered by a telephone interview, or respondents can complete the survey online or print it and mail it in.

    • Population and sample: State administrators of various types of early childhood/intervention programs, e.g. Child Care, Head Start, Public School pre-kindergarten programs, Part B-Section 619 (Preschool Program for Children with Disabilities), and Part C (Infant Toddler Program), in 50 states and DC

    • Funded by: U.S. Department of Education, Office of Educational Research and Improvement

    • Administered by: FPG Child Development Institute, The University of North Carolina at Chapel Hill

    • Periodicity: A 3 year project

    • Its findings related to DS:

    • Data availability:

    • Website: http://www.fpg.unc.edu/~nuestros/pages/survey.cfm?tab=survey
       

21. Part C Data (Data from the Office of Special Education Programs (OSEP), U.S. Department of Education for Annual Report to Congress):
    This data contains information about children with disabilities served under the Individuals with Disabilities Education Act (IDEA). IDEA Part C funds services to children ages birth through 2. Five types of data are collected: a child count, a count of children served according to the program setting in which they receive services, a count of the number of children exiting Part C, the early intervention services provided, and number of personnel employed to serve these children.

    • Population and sample: Children served under Part C from birth through 2 yrs

    • Funded and administered by: The U.S. Department of Education, Office of Special Education Programs, collects this information from states (in accordance with Section 618 of IDEA).

    • Periodicity: Annually

    • Its findings related to DS: Nationwide, the number of infants and toddlers served by Part C of IDEA has increased by 25% from 1994 to 1999 (1996 & 2001 reports). However, infants (birth - 12 months) represented only 17% of the total number of young children receiving Part C services in the 1999 Part C IDEA child count (2001 report).

    • Data availability: Data is available on 2001 (it was submitted to OSEP on 11-1 of 2002).

    • Additional comments: One of OSEP’s projects is the Pre-Elementary Education Longitudinal Study (PEELS). It will involve a nationally representative sample of children, ages 3 to 5 upon entry into the study, with diverse disabilities who are receiving preschool special education services in a variety of settings. “The study will focus on the children's preschool experiences and outcomes, their transition to kindergarten, and their kindergarten and early elementary education experiences and outcomes. The design calls for information about the children, their families, and their school programs to be collected repeatedly over several years. (Many sources of data will contribute to this study. Starting in September 2001, in-depth interviews will be conducted with parents (or guardians) of PEELS children, with subsequent interviews to occur throughout the study's 8 years).” Another project is the State and Local Implementation of IDEA (SLIIDEA). It will examine how the Amendments of the Individuals with Disabilities Education Act (IDEA) of 1997 are being implemented by states, school districts, and schools. “In particular, it will address issues focused on student performance, access to the curriculum, behavioral supports, parental involvement, and transitions for young children to school and youth to adult life. The study is also designed to measure change over time by collecting data at several points over a five-year period, beginning in 2000. This longitudinal study will answer the following research questions: How is IDEA being implemented? What is the status of each of the identified issues? What are the contextual factors influencing the implementation of the legislation? What is the relationship between implementation and the results? What are the intended and unintended outcomes of the legislation? What are the critical and emerging issues in states, districts, and schools?”

    • Website: http://www.ed.gov/offices/OSERS/OSEP/
       

22. Panel Study of Income Dynamics (PSID): Child Development Supplement (CDS)
    PSID has been administered since 1968. It is a longitudinal study on the dynamic aspects of economic and demographic behavior, as well as broad topics that include sociological and psychological measures. At the conclusion of 2003 data collection period, this study will have collected information from more than 65,000 individuals spanning as much as 36 years of their lives. In 1997, PSID added the CDS to the study, to collect data on parents and their 0 to 12-year-old children. This allows for researching the dynamic process of early human capital formation. The data collected through CDS include: reliable, age graded assessments of the cognitive, behavioral, and health status, which are obtained from the mother, a second caregiver, an absent parent, the teacher, and the child (via time diary of child’s activities if 3-12 years old); parental and caregiver time inputs to children as well as other aspects of the way children and adolescents spend their time; teacher-reported time use in elementary and preschool programs; and measures of other resources (e.g. the learning environment in the home, teacher and administrator reports of school resources, and decennial-census-based measurement of neighborhood resources).

    • Population and sample: nationally-representative of children and their families, ~3,500 children, ~2,500 families

    • Funded by: Primarily by the National Institute of Child Health and Human Development (NICHD), additional funding provided by the William T. Grant Foundation, the Annie E. Casey Foundation, the U.S. Department of Agriculture, and the U.S. Department of Education.

    • Administered by: University of Michigan Survey Research Center

    • Periodicity: Data was first collected in 1997 and then in 2001-2002.

    • Its findings related to DS:

    • Data availability: Data from the 1997 survey was released in 1999, data open to public

    • Website: http://www.isr.umich.edu/src/child-development/home.html
       

23. Pregnancy Risk Assessment Monitoring System (PRAMS)
    This is a surveillance project that collects state-specific, population-based data on maternal attitudes and experiences prior to, during, and immediately following pregnancy, through a mail-in questionnaire. This data can be used for planning and assessing health programs and for describing maternal experiences that may contribute to maternal and infant health. It also can be used by state agencies to identify other agencies that have important contributions to make in planning maternal and infant health programs and to develop partnerships with those agencies. The core portion of the questionnaire includes questions about the following: attitudes and feelings about the most recent pregnancy, content and source of prenatal care, harmful exposures during pregnancy, pregnancy-related morbidity, and infant health care. The PRAMS questionnaire consists of two parts, core questions that appear on every state’s surveys and a state-tailor questionnaire (14-page questionnaire). Selected women are first contacted by repeat mailings. If there is no response, women are contacted and interviewed by telephone. Data collection procedures and instruments are standardized across states, to allow for state comparisons.
    Responses are accumulated during the calendar year, combined with birth certificate data, and then weighted to be representative of all mothers who had a live-born infant in the state.

    • Population and sample: A sample of mothers who had a recent live birth, randomly selected from state birth certificate records, 1,300-3,400 women per participating state, per year, women from some higher risk populations are sampled at a higher rate, 31 participating states and NYC

    • Funded and administered by: CDC developed the questionnaire, it is a surveillance project of the CDC and state health departments

    • Periodicity: Annually, for many states 2002 was the first year they collected data

    • Its findings related to DS:

    • Data availability: Currently, data up through 2000 are available, anticipate that 2001 data will be available in late 2003, data is collected year round

    • Website: http://www.cdc.gov/nccdphp/drh/srv_prams.htm
       

24. Promoting Healthy Development Survey (PHDS-PLUS):
    This survey is meant to help states evaluate the quality of care delivered to children enrolled in state-sponsored health insurance programs. Its seven core measures are: anticipatory guidance (based on Bright Futures and AAP criteria), health information, follow-up for children at risk for developmental/behavioral delays, assessment of alcohol, smoking, as well as other substance abuse, assessment of well-being and safety in the family, family centered care, and helpfulness and effect of care provided. The survey is administered to mothers of children under age 4.

    • Population and sample: ~6,000 mothers of Medicaid-enrolled children under age 4, in North Carolina, Vermont, and Washington (along with Utah, these states are participating in the Commonwealth Fund's Assuring Better Child Health and Development program)

    • Funded by: The Commonwealth Fund

    • Administered by: The Foundation for Accountability (FACCT)

    • Periodicity: Data collection for PHDS in the three states was collected from 2001 to 2002. The next PHDS will be administered in the summer and fall of 2003, in four states (Minnesota, Mississippi, Louisiana, and Ohio).

    • Its findings related to DS:
      1. PHDS presentation at: http://www.uic.edu/sph/cade/amchp2001/ppt/session4/session4b/
      Findings: There was a significant difference in quality measure scores observed between health plans, counties, and child characteristics (child’s age, risk for developmental/behavioral delay, and CSHCN status). They also found that providers needed to be educated about parent’s need for information and about the importance of family assessments and that more research is needed to enhance systems that ensure developmental assessments occur consistently. Furthermore, they found a need to educate parents on promoting healthy development.
      2. Christina Bethell, Colleen Peck, Melinda Abrams, Neal Halfon, Harvinder Sareen, Karen Scott Collins. Partnering with Parents to Promote the Healthy Development of Young Children Enrolled in Medicaid. (#570). The Commonwealth Fund Publications. 2002
      Findings: “Forty percent of parents reported at least one concern about their child's social, emotional, behavioral, and/or cognitive development. Moreover, the concerns of approximately one of five (19%) parents were significant enough to indicate that their child was at moderate to high risk for developmental delay. Two of five parents reported that their child's pediatric clinician did not routinely ask them whether they had concerns about their child's development and well-being. Less than half (46%) of parents with potentially serious concerns about their child said they received the information they needed to address those concerns. Children who had a regular, personal pediatric clinician or nurse were one-and-a-half times more likely to receive a basic level of comprehensive care than children without one (24% vs. 16%). Nevertheless, nearly one of five children lacked a personal pediatric provider (17%)”.
      3. Bethell C. Peck C. Schor E. Assessing health system provision of well-child care: The Promoting Healthy Development Survey. [Journal Article. Validation Studies] Pediatrics. 107(5):1084-94, 2001 May.
      This article reports on the content of the survey and its psychometric properties. “Psychometric analyses demonstrated that the PHDS quality measure scales have strong construct validity (mean factor loading: 0.69) and internal consistency (mean Cronbach's alpha: 0.80).”

    • Data availability: Have not yet explored the option of releasing data

    • Additional comments: In addition to planning the next administration of their survey, they are currently writing up grant proposals that would further implement and apply the PHDS at the practice level.

    • Website: http://www.facct.org/facct/site/facct/facct/home
       

25. Study of Early Child Care (SECC):
    This study was initiated in 1989, to examine the relationship between child care experiences and characteristics and children's developmental outcomes. It follows children from birth through middle childhood, by measuring their development at frequent intervals. The instruments they use to do this include: the Adaptive Social Behavior Inventory (at 24 and 36 months), the Bayley Scales of Infant Development - Revised (standardization version) (at 24months), and the Bayley Scales of Infant Development (Mental Development Index) (at 15months).

    • Population and sample: Participants recruited from designated hospitals at 10 data collection sites, they were selected in accordance with a conditionally random sampling plan, to include an economically, educationally, and ethnically diverse study population, 1364 families with full-term healthy newborns

    • Funded by: The National Institute of Child Health and Human Development (NICHD)

    • Administered by: NICHD and a selected research team located at universities across the U.S.

    • Periodicity: Phase I of the study was conducted from 1991-1994 (children birth to age 3 years), Phase II was during 1995-2000 (children 3 years old through their second year in school), Phase III 2001-2005 (through their sixth year in school)

    • Its findings related to DS:

    • Data availability: Can apply for Phase I and Phase II data

    • Website: http://secc.rti.org/home.cfm
       

26. Title V Roles in Coordinating Care for Children with Special Heath Care Needs (CSHCN): National Survey:
    The role of this survey was to study care coordination for CSHCN in all states and to better understand the role of Title V in this process. Specifically, the study collected data on both client-level care coordination (assistance of care coordination provided to individual children and families) and system-level care coordination (assistance of care coordination in linking policies and programs). On the client level, this included information on eligibility, providers of care-coordination service, processes and procedures in delivering care coordination, and financing of care coordination. On the systems level, this included information on efforts for: identifying CSHCN, facilitating interagency coordination, building structures to link CSHCN and their families to needed serves, establishing standards and mechanisms for services, monitoring care coordination, and involving families in care-coordination. Mail-in surveys were sent to Title V/CSHCN state agencies and phone interviews were done on a portion of the states that responded to the written surveys.

    • Population and sample: Title V/CSHCN agencies in all 50 states and the DC were sent a survey, 46 completed the survey and of these 14 were interviewed over the telephone

    • Funded by: National Policy Center for CSHCN through funding from the Maternal Child Health Bureau

    • Administered by: Health Systems Research, Inc.

    • Periodicity: Fall of 1999 sent mail-in surveys, later did telephone interviews

    • Its findings related to DS:
      Zimmerman, B. et al. Title V Roles in Coordinating Care for Children with Special Heath Care Needs. July 2000
      Findings: Thirty-five out of the 46 (3/4 of) states that responded indicated that they were involved in screening children for SHCN and 26/46 states indicated that they were involved in developing or implementing screening tools for identifying CSHCN, through activities such as work with Medicaid or other agencies to influence policies and procedures. For results on other topics of systems coordination, see website below.
      McManus M. Fox H. Newacheck P. McPherson M. Dunbar J. Strengthening partnerships between state programs for children with special health care needs and managed care organizations. Journal of Ambulatory Care Management. 20(3):19-30, 1997 Jul
      Findings: “The authors surveyed Title V CSHCN programs to learn about critical issues and examples of collaboration with managed care organizations in the following areas: (1) defining and identifying children with special health care needs, (2) enrollment assistance and family participation, (3) pediatric provider and service requirements, (4) education and training, (5) quality of care, and (6) pediatric risk-adjusted capitation mechanisms. This article also includes recommendations developed by the federal Maternal and Child Health Bureau's Work Group on Managed Care.”

    • Data availability: Results were published in July 2000 by the MCHB, HRSA, DHHS. Since this is a government agency the data collected should be open to the public

    • Additional comments: Through the annual applications and reports that are submitted by all 59 U.S. States, Territories, and Jurisdictions, they collect information on key measures of maternal and child health (MCH) in the United States. This information is captured electronically through the Title V Information System (TVIS).

    • Website: http://www.jhsph.edu/wchpc/projects/cshcn/final.pdf
       

27. What Grown Ups Understand About Child Development: A National Benchmark Survey, 2000
    This survey sought to provide information on what Americans know about raising emotionally, intellectually, and socially healthy children. It measured the child development knowledge of parents and examined what the general public thinks about selected policies that affect children and families.

    • Population and sample: 3,000 American adults, 1,066 of whom were parents

    • Funded by: Zero to Three, Civitas, and BRIO Corporation

    • Administered by: Conducted by DYG, Inc

    • Periodicity: Although this is a one time study, Zero to Three funds surveys periodically (perhaps every ~3years).

    • Its findings related to DS:

      • The survey indicated that parents understand the role they play in their child’s health and development.
         71% of adults understand that brain development can be impacted very early
         76% realize that a child’s early experiences have a significant impact on abilities that appear much later in a child’s life.

      • However many lacked important knowledge and information about how they can best support their child’s development

      • Many indicated that they want accessible child development information and that they usually turn to their pediatric provider for such information

    • Data availability: Results of the survey have been published, data availability is uncertain

    • Additional comments: A similar study to this was done in 1997, the Nationwide Survey Among Parents of Zero-to-Three-Year-Olds, which was funded by Zero to Three. Key findings are presented on their web site. In general the study, done by Peter D. Hart Research Associates, involved an in-depth telephone survey with a representative nationwide sample of mothers and fathers and legal guardians of children age 36 months and younger (those AA and H were over-sampled). A total of 1,022 interviews were completed.

    • Website: http://www.zerotothree.org/parent_poll.html

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The National Center on Birth Defects and Developmental Disabilities (NCBDDD) promotes the health of babies, children, and adults, and enhances the potential for full, productive living.  Our work includes identifying the causes of birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities.