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Child Development |
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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.
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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).
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Population and sample: A sample
of active US members of the AAP, approximately 1600, (response rate
of ~60% for most surveys)
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Funded by: AAP
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Administered by: AAP
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Periodicity: Three or four
surveys per year
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Its findings related to DS:
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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).”
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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
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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%).
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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).
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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.”
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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.
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Additional comments: Surveys
are extensively reviewed by practicing pediatricians for terminology
and each one is pilot tested with a random sample of members.
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Website:
http://www.aap.org/research/surv1.htm
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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.
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Population and sample: Low
income children
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Funded by: The Agency for
Healthcare Research and Quality (AHRQ), The David and Lucile Packard
Foundation, and The Health Resources and Services Administration
(HRSA)
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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.
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Periodicity: One time studies
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Its findings related to DS: The
Findings are more related to differences in ways of implementing
S-CHIP, in relation to Medicaid.
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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.
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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).
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Website:
http://www.ahcpr.gov/about/cods/chiriproj.htm
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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.
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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
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Funded by: The Robert Wood
Johnson Foundation (RWJF)
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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)
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Periodicity: Biennially
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Its findings related to DS:
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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.”
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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.”
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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”
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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.”
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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.”
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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.
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Website:
http://www.hschange.com/index.cgi?data=01 and
http://www.icpsr.umich.edu/HMCA/cts.html
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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.
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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.
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Funded by: U.S. Department of
Education, National Center for Education Statistics (NCES), in
collaboration with several health, education and human services
agencies.
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Administered by: U.S.
Department of Education, NCES
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Periodicity: Children are
followed from birth through first grade, information is collected at
9-, 24-, 48-months and in kindergarten and first grade.
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Its findings related to DS:
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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.
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Website:
http://nces.ed.gov/ecls/
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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.
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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)
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Administered by: Centers for
Medicare and Medicaid Services
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Periodicity: Annual
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Its findings related to DS:
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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.”
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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.”
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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.”
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Data availability: Currently
data up to 1998 at the national level and up to 1999 at the state
level.
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Website:
http://cms.hhs.gov/medicaid/epsdt/default.asp
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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.
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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.
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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
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Funded by: National Committee
for Quality Assurance
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Administered by: National
Committee for Quality Assurance
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Periodicity: Annually
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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.”
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Data availability: Available by
request (via submitting research proposal and agreeing to contract
that doesn’t allow for public access) and through a fee.
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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.
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Website:
http://www.ncqa.org/Programs/HEDIS/index.htm
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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).
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Population and sample: 108
Congressional Districts
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Funded by: Annie E. Casey Foundation
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Administered by:
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Periodicity: Was done in 1990
and in 2000
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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.”
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Data availability: Data is
available to public
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Website:
http://www.aecf.org/kidscount/census/
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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.
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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).
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Funded by: Agency for
Healthcare Research and Quality (AHRQ)
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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
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Periodicity: It is done
annually
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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.
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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
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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.
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Website:
http://ncbd.cahps.org/Home/Index.asp
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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.
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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
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Funded by: Office of Special
Education Programs, US Department of Education
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Administered by: Stanford Research
Institute (SRI) International is administering the mail surveys
through a cooperative agreement with the Department of Education
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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
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Its findings related to DS:
Source: 22nd Annual Report to Congress, Section IV
Findings:
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More children entered early
intervention in the first and third year of life, than in the
second.
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The most frequently reported reason
for receiving early intervention was speech/communication impairment
or delay (41%).
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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).
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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%).
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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.
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Website:
http://www.sri.com/neils/
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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.
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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
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Periodicity: One time study
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Data availability: Collected
data in 2001 and now in analysis stage
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Website:
http://www.sri.com/neils/expend.html
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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.
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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).
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Funded and administered by:
National Center for Education Statistics (NCES)
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Periodicity: Every 2-3 years,
the next data collection period will be in 2005 and will include the
early childhood program participation survey
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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.”
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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
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Website:
http://nces.ed.gov/nhes/Main/schlread.asp
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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.
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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
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Funded and administered by:
National Center for Health Statistics, CDC
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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)
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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
-
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
-
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://prod.urban.org/publications/309308.html
-
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
-
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
-
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
-
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
-
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
-
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/
-
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
-
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
-
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
-
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
-
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
-
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.
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Website:
http://www.zerotothree.org/parent_poll.html
DISCLAIMER:
We have no control over the content on outside
websites. Links to these sites are included for information only. The
views and opinions expressed there are not necessarily those of CDC, the
Department of Health and Human Services (HHS), or the U.S. Public Health
Service (PHS).
[Return to Top]
Date: September 20,
2005
Content source: National Center on Birth Defects and Developmental
Disabilities
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