Associations between state economic and health systems capacities and service use by children with special health care needs.

To examine the relationship between measures of state economic, political, health services, and Title V capacity and individual level measures of the well-being of CSHCN. We selected five measures of Title V capacity from the Title V Information System and 13 state capacity measures from a variety of data sources, and eight indicators of intermediate health outcomes from the National Survey of Children with Special Health Care Needs. To assess the associations between Title V capacity and health services outcomes, we used stepwise regression to identify significant capacity measures while accounting for the survey design and clustering of observations by state. To assess the associations between economic, political and health systems capacity and health outcomes we fit weighted logistic regression models for each outcome, using a stepwise procedure to reduce the models. Using statistically significant capacity measures from the stepwise models, we fit reduced random effects logistic regression models to account for clustering of observations by state. Few measures of Title V and state capacity were associated with health services outcomes. For health systems measures, a higher percentage of uninsured children was associated with decreased odds of receipt of early intervention services, decreased odds of receipt of professional care coordination, and increased odds of delayed or missed care. Parents in states with higher per capita Medicaid expenditures on children were more likely to report receipt of special education services. Only two state capacity measures were associated explicitly with Title V: states with higher generalist physician to population ratios were associated with a greater likelihood of parent report of having heard of Title V and states with higher per capita gross state product were less likely to be associated with a report of using Title V services, conditional on having heard of Title V. The state level measure of family participation in Title V governance was negatively associated with receipt of care coordination and having used Title V services. The measures of state economic, political, health systems, and Title V capacity that we have analyzed are only weakly associated with the well-being of children with special health care needs. If Congress and other policymakers increase the expectations of the states in assuring that the needs of CSHCN and their families are addressed, it is essential to be cognizant of the capacities of the states to undertake that role.

The relationship between state capacity measures and allocations to children and youth with special needs within the MCH Services Block Grant.

OBJECTIVES: To examine the association between state economic, political and health services capacity and state allocations for Title V capacity for Children and Youth with Special Health Care Needs (CSHCN). METHODS: Numerous datasets were reviewed to select 13 state capacity measures: per capita Gross State Product (economic); governor's institutional powers and legislative professionalism (political); percent of Children with Special Health Care Needs, percent of uninsured children, percent of children enrolled in Medicaid, state health funds as a percent of Gross State Product, ratio of Medicaid to Medicare fees, percent of children in Medicaid enrolled in managed care, per capita Medicaid expenditures for children, ratios of pediatricians/family practitioners and pediatric subspecialists per 10,000 children, and categorical versus functional state definition of CSHCN (health). Five measures of Title V capacity were selected from the Title V Information System, four that reflect allocation decisions by states and the fifth a state assessment of the role of families in Title V decision-making: ratio of state/federal Title V spending; per capita state Title V spending; percent of state Title V spending on CSHCN; state per child spending on CSHCN; and, state Title V Family Participation Score. OLS regression was used to model the association between state and Title V capacity measures. RESULTS: The percentage of the state's gross state product (GSP) accounted for by state health funds and the per capita GSP were positively associated with the per capita expenditures on all children. The percentage of CSHCN in the state was negatively associated with the ratio of state to federal support for Title V and the per child expenditures on CSHCN. Lower family participation scores were associated with having a hybrid legislature; however, higher family participation scores were found in states using a functional definition of special needs. CONCLUSIONS: Measures of state economic, political and health services capacity do not demonstrate consistent and significant associations with the Title V capacity measures that we explored. States with greater economic capacity appear to devote more financial resources to Title V. Our finding that per capita CSHCN expenditures are negatively associated with the percentage of CSHCN in the state suggests that there is an upper limit on what states devote to CSHCN. Our current understanding of what state factors influence Title V capacity remains limited.

Predictors of referral to the North Carolina Child Service Coordination Program among infants with orofacial clefts.

OBJECTIVE: North Carolina has several programs that identify high-risk women and children for needed services, including the Child Service Coordination Program (CSCP). This study determines CSCP referral rates among infants with orofacial clefts (OFCs) and predictors of CSCP referral. We hypothesized receiving Medicaid and maternity care coordination (MCC) services increases the likelihood of CSCP referral. DESIGN AND SETTING: For births between 1999 and 2002, data were matched from North Carolina Vital Statistics, Health Services Information System (MCC and CSCP data), and North Carolina Birth Defects Monitoring Program. Multivariate analysis was used to determine crude and adjusted odds ratios for sociodemographic variables to predict CSCP referral. PARTICIPANTS: A total of 644 mothers of live-born infants with OFCs in North Carolina were identified. RESULTS: About 45% of infants with OFCs were referred to the CSCP. Infants of mothers who were at least 30 years of age and mothers who had more than a high school education were significantly less likely to be referred to the CSCP. Compared with infants with OFCs whose mothers did not receive Medicaid, mothers who received Medicaid were 1.9 times more likely to be referred to the CSCP, and mothers who received Medicaid and MCC services were 2.3 times more likely. CONCLUSIONS: Receipt of Medicaid and MCC services and receipt of Medicaid alone were positively associated with CSCP referral. Future studies should examine the effects of the duration of MCC services and factors related to the timeliness of CSCP referral.

Improving the accessibility of an analytic and technical skills MCH toolbox.

OBJECTIVES: To assess our analytic and technical skills website for accessibility and to make necessary corrections. METHODS: We used commercially available software (Jaws and LIFT for Dreamweaver) and an individual with visual impairments to evaluate our self-instructional, analytic, and technical tools. We identified problems in tables, images, multimedia content, PDF files, and links. RESULTS: We repaired the site by using LIFT to make appropriate modifications to the website and tools. CONCLUSIONS: Improving accessibility is advantageous for all Internet users. In addition to responding to legislative mandates, accessible web design creates pages that are often more readable, easier to navigate, and faster to download. Improving the accessibility of websites that incorporate charts and graphs strengthens the ability of all members of the MCH workforce to address the core functions.

Online analytic and technical training.

The authors describe the effect of online analytic and technical skills training tools on professional development and practice. Three questions were addressed: (1) Will maternal and child health and other public health professionals register for and engage in online training opportunities? (2) Was this mode of instruction perceived to be an effective means for learning specific skills? and (3) What was the impact of the tools on user knowledge, confidence, practice, and sharing of skills with colleagues? Evaluating open-enrollment online training posed significant challenges. Nonetheless, registration data and the responses to the online surveys affirmed that the opportunity for asynchronous, online learning was an effective means for learning specific skills.

Identifying children in need of ancillary and enabling services: a population approach.

Children with chronic or disabling conditions use health, education and social services at a higher rate than their healthy peers. Estimates of the number of children in need of these specialized services are widely varied and often depend on categorical definitions that do not account for either the diversity or commonality of their experiences. Developing methods for identifying the population in need of services, particularly children likely to use long-term ancillary (audiology, occupational, physical or speech therapy, or social work) and/or enabling services (special equipment, personal care assistance, respite care, transportation, or environmental modifications), is essential for effective policy and program implementation. This study examines several recent attempts to operationalize definitions of children with chronic conditions using a noncategorical classification approach. Particular emphasis is placed on the subgroup of children identified as having functional limitations. Proposed operational definitions of children with functional limitations are compared using data from the 1994-1995 Disability Supplement to the US National Health Interview Survey. Estimates of the number of children reported to be using ancillary and enabling services are generated and compared across operational definitions of functional limitation as well as by the number, severity, and type (i.e. mobility, self-care, communication/sensory, social cognition/learning ability) of limitation. Depending on the operational definition selected, 9-14% of US community-dwelling children are estimated to have functional limitations. Among children with limitations, 26-30% regularly use ancillary services and 11-14% use enabling services. The strengths, limitations, and potential applications for each operational definition are discussed.

Registry to referral: using birth defects registries to refer infants and toddlers for early intervention services.

BACKGROUND: Although many birth defect surveillance systems were developed for the primary purpose of monitoring trends and conducting epidemiologic studies, a number of programs have recognized the potential of birth defects monitoring systems for identifying and referring children who may be eligible for services. Because almost all surveillance programs maintain a registry of all children who have been diagnosed with birth defects in a particular state or other defined geographic region, registries can play an important role in identifying eligible children and providing timely referral to specialized services. METHODS: We sent electronically an 18-question survey to the Centers for Disease Control and Prevention's list of State Birth Defects Surveillance Contacts in all 50 states, the District of Columbia, and Puerto Rico. The survey queried states as to whether they had or were developing a birth defect surveillance program, the extent to which they were currently using or were considering using their program as a means of identifying and referring children for services, and if so, the manner in which referrals were made. RESULTS: We received completed surveys from all 50 states, Washington, DC, and Puerto Rico. Thirty-two of the fifty-two respondents stated that their state or entity has an operational birth defect surveillance program. Of these, 13 have implemented an identification and referral system within the surveillance program. All 16 states that were planning a surveillance program are also are planning or beginning to implement a program that would include an identification and referral system. Respondents cited lack of resources and confidentiality concerns as being the major barriers to implementing a referral system for their registry. CONCLUSIONS: For many registries, using their surveillance data for program development purposes represents a new undertaking. This trend reflects increasing recognition of the role that state-based birth defect surveillance systems can play in supporting child-find efforts for children with special needs. In the long run, this expanded focus may further enhance the public health usefulness of birth defect surveillance programs.