Stephen J. Blumberg

Trends in the Prevalence of Developmental Disabilities in US Children, 1997–2008

OBJECTIVE: To fill gaps in crucial data needed for health and educational planning, we determined the prevalence of developmental disabilities in US children and in selected populations for a recent 12-year period. PARTICIPANTS AND METHODS: We used data on children aged 3 to 17 years from the 1997–2008 National Health Interview Surveys, which are ongoing nationally representative samples of US households. Parent-reported diagnoses of the following were included: attention deficit hyperactivity disorder; intellectual disability; cerebral palsy; autism; seizures; stuttering or stammering; moderate to profound hearing loss; blindness; learning disorders; and/or other developmental delays. RESULTS: Boys had a higher prevalence overall and for a number of select disabilities compared with girls. Hispanic children had the lowest prevalence for a number of disabilities compared with non-Hispanic white and black children. Low income and public health insurance were associated with a higher prevalence of many disabilities. Prevalence of any developmental disability increased from 12.84% to 15.04% over 12 years. Autism, attention deficit hyperactivity disorder, and other developmental delays increased, whereas hearing loss showed a significant decline. These trends were found in all of the sociodemographic subgroups, except for autism in non-Hispanic black children. CONCLUSIONS: Developmental disabilities are common and were reported in ∼1 in 6 children in the United States in 2006–2008. The number of children with select developmental disabilities (autism, attention deficit hyperactivity disorder, and other developmental delays) has increased, requiring more health and education services. Additional study of the influence of risk-factor shifts, changes in acceptance, and benefits of early services is needed.

Identifying children with special health care needs: Development and evaluation of a short screening instrument

BACKGROUND Public agencies, health care plans, providers, and consumer organizations share the need to monitor the health care needs and quality of care for children with special health care needs (CSHCN). Doing so requires a definition of CSHCN and a precise methodology for operationalizing that definition. RESEARCH OBJECTIVES The purpose of this study was to develop an efficient and flexible consequence-based screening instrument that identifies CSHCN across populations with rates commensurate with other studies of CSHCN. METHODS The CSHCN Screener was developed using the federal Maternal and Child Health Bureau (MCHB) definition of CSHCN and building on the conceptual and empirical properties of the Questionnaire for Identifying Children with Chronic Conditions (QuICCC) and other consequence-based models for identifying CSHCN. The CSHCN Screener was administered to 3 samples: a national sample of households with children (n = 17985), children enrolled in Medicaid managed care health plans (n = 3894), and children receiving Supplemental Security Income (SSI) benefits in Washington State (n = 1550). The efficiency, impact of further item reduction, and flexibility of administration mode were evaluated. Rates and expected variation in rates across demographic groups of children positively identified by one or more of the 5 CSHCN Screener item sequences in each sample were examined and multinomial logistic regression analysis were conducted to evaluate the effect of child characteristics in predicting positive identification. RESULTS The CSHCN Screener took approximately 1 minute per child to administer by telephone and 2.1 minutes per household. During self-administration, over 98% of respondents completed each of the 5 CSHCN Screener item sequences, and respondents accurately followed each of the item skip patterns 94% of the time. Mailed surveys and telephone-administered surveys led to similar rates of positive identification in the same sample. Two Screener items would have identified 80%-90% of children positively identified as CSHCN across the study samples, although using only 2 items eliminates some children with more complex health needs. Rates of children identified by the CSHCN Screener varied according to age, sex, race/ethnicity, health status, and utilization of health services. CONCLUSIONS Results of this study indicate that the CSHCN Screener requires minimal time to administer, is acceptable for use as both an interview-based and self-administered survey, and that rates of children positively identified by the CSHCN Screener vary according to child demographic, health, and health care-need characteristics. The CSHCN Screener provides a comprehensive yet parsimonious and flexible method for identifying CSHCN, making it more feasible than existing measures for standardized use across public agencies, health care plans, and other users.

A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005–2006

OBJECTIVES. We sought to examine the health care experiences of children with autism spectrum disorder and the impact of autism spectrum disorder on the family and to assess whether having a medical home is associated with less family impact. METHODS. We used the 2005–2006 National Survey of Children With Special Health Care Needs to compare 2088 children with special health care needs, aged 3 to 17 years, reported by their parents to have autism spectrum disorder, with children with special health care needs with “other emotional, developmental, or behavioral problems” (excluding autism spectrum disorder; n = 9534) and 26751 other children with special health care needs. We used weighted logistic regression to examine unmet needs for specific health care and support services, delayed care, no usual care source or personal physician, difficulty receiving referrals, and financial, employment, or time problems because of childs care. RESULTS. Nationally, an estimated 535000 children have special health care needs and autism spectrum disorder, a prevalence of 86 per 10000 children aged 3 to 17 years. Among children with special health care needs, 5.6% have autism spectrum disorder. Compared with other children with special health care needs without emotional, developmental, or behavioral problems, children with special health care needs with autism spectrum disorder were more likely to have unmet needs for specific health care services, family support services, delayed or foregone care, difficulty receiving referrals, and care that is not family centered. Children with special health care needs with autism spectrum disorder were more likely to live in families that report financial problems, need additional income for the childs medical care, reduce or stop work because of the childs condition, spend ≥10 hours per week providing or coordinating care, and paid more than

The relationship between autism and parenting stress.

1000 in the previous year for the childs care. The financial impacts of autism spectrum disorder were significantly more burdensome when children with special health care needs did not have a medical home. CONCLUSIONS. Children with special health care needs with autism spectrum disorder are significantly more likely to have problems regarding access to care and unmet needs, and their families have greater financial, employment, and time burdens compared with other children with special health care needs. Receipt of primary care in a medical home may reduce these burdens.

Telephone Coverage and Health Survey Estimates: Evaluating the Need for Concern About Wireless Substitution

OBJECTIVE. We assessed associations between parenting a child with autism and stress indicators. METHODS. In the 2003 National Survey of Children’s Health, parents or other knowledgeable adult respondents for children aged 4 to 17 years reported their recent feelings about their life sacrifices to care for their child, difficulty caring for their child, frustration with their child’s actions, and anger toward their child. Responses were compiled in the Aggravation in Parenting Scale. Parents of children reported to have autism (N = 459) were compared with parents of: (1) children with special health care needs including emotional, developmental, or behavioral problems other than autism that necessitated treatment (children with other developmental problems [N = 4545]); (2) children with special health care needs without developmental problems (N = 11475); and (3) children without special health care needs (N = 61826). Weighted estimates are presented. RESULTS. Parents of children with autism were more likely to score in the high aggravation range (55%) than parents of children with developmental problems other than autism (44%), parents of children with special health care needs without developmental problems (12%), and parents of children without special health care needs (11%). However, within the autism group, the proportion of parents with high aggravation was 66% for those whose child recently needed special services and 28% for those whose child did not. The parents of children with autism and recent special service needs were substantially more likely to have high aggravation than parents of children with recent special service needs in each of the 3 comparison groups. Conversely, parents of children with autism but without recent special service needs were not more likely to have high aggravation than parents of children with other developmental problems. CONCLUSIONS. Parenting a child with autism with recent special service needs seems to be associated with unique stresses.

Reevaluating the Need for Concern Regarding Noncoverage Bias in Landline Surveys

OBJECTIVES We sought to determine whether the exclusion of adults without landline telephones may bias estimates derived from health-related telephone surveys. METHODS We took data from the 2004 and 2005 National Health Interview Survey and used logistic regression to compare the odds of behavioral risk factors and health care service use for adults with landline telephones to those for adults with only wireless telephones and adults without any telephone service. RESULTS When interviewed, 7.2% of adults, including those who did and did not have wireless telephones, did not have landline telephones. Relative to adults with landline telephones, adults without landline telephones had greater odds of smoking and being uninsured, and they had lower odds of having diabetes, having a usual place for medical care, and having received an influenza vaccination in the past year. CONCLUSIONS As people substitute wireless telephones for landline telephones, the percentage of adults without landline telephones has increased significantly but is still low, which minimizes the bias resulting from their exclusion from telephone surveys. Bias greater than 1 percentage point is expected only for estimates of health insurance, smoking, binge drinking, having a usual place for care, and receiving an influenza vaccination.

The National Survey of Children with Special Health Care Needs

OBJECTIVES We used recent data to reexamine whether the exclusion of adults from households with no telephone or only wireless phones may bias estimates derived from health-related telephone surveys. METHODS We calculated the difference between estimates for the full population of adults and estimates for adults with landline phones; data were from the 2007 National Health Interview Survey. RESULTS When data from landline telephone surveys were weighted to match demographic characteristics of the full population, bias was generally less than 2 percentage points (range = 0.1-2.4). However, among young adults and low-income adults, we found greater bias (range = 1.7-5.9) for estimates of health insurance, smoking, binge drinking, influenza vaccination, and having a usual place for care. CONCLUSIONS From 2004 to 2007, the potential for noncoverage bias increased. Bias can be reduced through weighting adjustments. Therefore, telephone surveys limited to landline households may still be appropriate for health surveys of all adults and for surveys of subpopulations regarding health status. However, for some behavioral risk factors and health care service use indicators, caution is warranted when using landline surveys to draw inferences about young or low-income adults.

Comparison of the Children With Special Health Care Needs Screener to the Questionnaire for Identifying Children With Chronic Conditions—Revised

CONTEXT The federal and state-level Children with Special Health Care Needs (CSHCN) programs are vested with the responsibility for planning and developing systems of care for children with special health care needs. To support achievement of this goal, the federal Maternal and Child Health Bureau (MCHB), in partnership with the National Center for Health Statistics (NCHS), has developed a new survey that will provide uniform national and state data on the prevalence and impact of special health care needs among children. PURPOSE The National Survey of CSHCN is designed to produce reliable state- and national-level estimates of the prevalence of special health care needs using MCHBs definition of CSHCN. It will also provide baseline estimates for federal and state Title V Maternal and Child Health performance measures, for Healthy People 2010 national prevention objectives, and for each states Title V needs assessment. In addition, it will provide a resource for researchers, advocacy groups, and other interested parties. It is anticipated that this survey will be repeated periodically, thereby making trend analysis possible. METHODS This survey is being conducted using the State and Local Area Integrated Telephone Survey mechanism, which shares the random-digit-dial sampling frame of the National Immunization Survey (sponsored by the National Immunization Program and NCHS). Using the CSHCN Screener, developed under the auspices of the Foundation for Accountability, 750 children with special health care needs will be identified and selected from each state and from the District of Columbia. Parents or guardians of these children then complete a comprehensive battery of questions on demographics, health and functional status, health insurance coverage, adequacy of health insurance coverage, public program participation, access to care, utilization of health care services, care coordination, satisfaction with care, and the impact of the special need on the family. Data collection began in October 2000 and will continue through March 2002. Summary reports and electronic data files will be available to the public within 6 to 12 months following completion of data collection. CONCLUSIONS The National Survey of CSHCN will offer a unique data source for individuals and organizations interested in understanding and improving service delivery for CSHCN. It is an accomplishment that reflects the contributions of state and federal Title V programs, family organizations, provider organizations, health services researchers, and the broader maternal and child health community.

Differentiating Subgroups of Children with Special Health Care Needs by Health Status and Complexity of Health Care Needs

BACKGROUND The Children with Special Health Care Needs (CSHCN) Screener is an instrument to identify CSHCN, one that is based on parent-reported consequences experienced by children with ongoing health conditions. Information about how this instrument compares to other methods for identifying CSHCN is important for current and future uses of the CSHCN Screener. RESEARCH OBJECTIVES The goal of this study was to assess the level of agreement between the CSHCN Screener and the Questionnaire for Identifying Children With Chronic Conditions--Revised (QuICCC-R) and to describe the characteristics of children in whom these methods do not agree. METHODS The CSHCN Screener and the QuICCC-R were administered to 2 samples: a random sample of parents of children under age 18 years through the first pretest of the National CSHCN Survey (n = 2420) and a random sample of children under age 14 years enrolled in a managed care health plan (n = 497). Information on specific conditions and needs for health services were collected for children identified by one or both instruments in the national sample. Data from the administrative data-based Clinical Risk Groups (CRGs) were collected for all children in the health plan sample. The proportions of children identified with the CSHCN Screener and the QuICCC-R were compared, the level of agreement between these 2 methods was assessed, and the health service needs of children identified by the QuICCC-R but not the CSHCN Screener were evaluated. RESULTS In both study samples, the CSHCN Screener agreed with the QuICCC-R approximately 9 out of 10 times on whether or not a child was identified as having a special health care need. Compared to the CSHCN Screener, the QuICCC-R identified an additional 7.6% and 8.5% of children as having special health care needs in the national and health plan samples, respectively. Compared to children identified by the QuICCC-R only, the odds were 12 times greater that children identified by both the CSHCN Screener and the QuICCC-R needed health care services, 6 times greater that parents named a specific chronic health condition, and 9 times greater that children were identified with a chronic condition using the CRG algorithm. Study design and purposeful differences in question design or content account for most cases in which children are not identified by the CSHCN Screener but are identified using the QuICCC-R. CONCLUSIONS The brief CSHCN Screener exhibits a high level of agreement with the longer QuICCC-R instrument. Whereas nearly all children identified by the CSHCN Screener are also identified by the QuICCC-R, the QuICCC-R classifies a higher proportion of children as having special health care needs.

The National Survey of Children's Health: A New Data Resource

Objectives Our objective is to use the Children with Special Health Care Needs (CSHCN) Screener to identify subgroups of CSHCN differentiated by health status and complexity of need. Methods Data are from the National Survey of Children with Special Health Care Needs, 2001 and the National Survey of Children’s Health, 2003 (conducted by the Maternal and Child Health Bureau and the National Center for Health Statistics); and the 2001 and 2002 Medical Expenditure Panel Survey, conducted by the Agency for Healthcare Research and Quality. A broad array of variables measuring health status, complexity of need, and related issues are examined by subgroupings of CSHCN. Results Relative to other CSHCN, CSHCN with functional limitations or who qualify on more CSHCN Screener items have poorer health status and more complex health care needs. They more often experience a variety of health issues; their insurance is more often inadequate; the impact of their conditions on their families is higher; and their medical costs are higher. Conclusion In the absence of information on specific conditions, health status, or complexity of need, the CSHCN Screener alone can be used to create useful analytic subgroups that differ on these dimensions. The proposed subgroups, based on the type or number of CSHCN screening criteria, differentiate CSHCN by health status and complexity of health care needs, and also show differences in the impact of their conditions on their families, costs of their medical care, and prevalence of various health problems.