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TIPS FOR USING THE DATA

How to interpret and use the data accurately

DATA SOURCES

Where the data comes from: full sources and methods.

TIPS FOR USING THE DATA

How to understand, interpret and use the data accurately

Chartbook users should be alert to two general points about the data:

  1. Comparable vs. Current
    Because we want to permit comparisons across states, we have tried to use data items that are defined and gathered consistently across states. As a result, some of the data presented may not be the most current data available for a particular state on a particular issue, but are the most current data available for all states on that issue.

    When sharing information about a single state, it may make sense to update particular items for which more timely, state-specific data are available. When comparing multiple states, however, we encourage you to use the data presented here, or turn to the sources of those data.
     
  2. A Caution on Comparisons
    There are data elements which, despite having been defined and gathered consistently, reflect substantial state-to-state differences in consumer attitudes or expectations. We try to indicate those items, and encourage caution in making state-to-state comparisons on those points.

Points like this, which highlight possible pitfalls in using particular data elements, are marked .

Jump to tips for using data in:

Demographics

Economics

Child Health Services

Factors Influencing Health Insurance Coverage

Title V Program
DEMOGRAPHICSBack to top
The makeup of a state’s population is the starting place for understanding health needs.
Child Population
Total child population is the backdrop for understanding the size of the CYSHCN population. Even a state with a relatively low rate of reported special health care needs may need a huge infrastructure to serve its CYSHCN if the overall child population is large. Children as a percentage of the population may indicate the extent to which children’s issues are likely to be a top priority for state policymakers.
Race/Ethnicity
The Chartbook uses broad race/ethnicity categories, for example, grouping African-American with other Black children, to avoid creating subgroups too small for statistical calculations. By combining smaller groups, we make it feasible to compare those groups statistically to others in the population. This makes it possible to identify disparities among race/ethnicity groups. In some states, large numbers in particular subgroups may indicate need to address language as part of health care access.
Urban/Rural
Data here are originally derived from the 2000 Census, which defines “urban” as an area with more than 2,500 residents. Rural areas may pose access problems for families raising CSHCN. Access to specialty care may be especially challenging.
Special Health Care Needs
These figures reflect parent responses to “screener” questions about the child’s use of or need for services, rather than an objective assessment of health status. Be cautious in comparing rates across states and subgroups. Differences may reflect parental perceptions rather than real differences in child health needs. It is especially important not to assume that higher reported prevalence of special health needs is evidence of worse health conditions for children.
Low Birth Weight
Low birth weight is defined as newborn weight below 2500 grams (about 5 lbs). It is an important marker for the general well-being of newborns.
Special Education
The Chartbook has no basis for implying that a particular level of participation in special education is a good or bad thing from an educational perspective. What is important is that special education is often a source of developmental services that complement health services for some children with special needs. States vary widely in the nature and extent of services provided.
ECONOMICSBack to top
We present variables related to general economic conditions in a state and variables that bear on financing of services relevant to CYSHCN. The former provide a sense of wealth and poverty in each state and the resultant need for publicly funded health services among state residents, while the latter point to investment of resources in public programs.
Income
Per capita income is a useful, rough measure of the financial well-being of state residents. However, it may mask wide disparities between rich and poor in a state. And even in a state with high per capita income, children may be over-represented among poor and near-poor households.
Unemployment
Unemployment is a general marker of family well-being in a state. It also highlights an adult population who may lack health coverage.
Financial Impact of Caregiving
This percentage reflects financial hardship and reduced employment reported by families raising CYSHCN, and may indicate unmet support services needs.
Employer Size and Employer-Sponsored Health Insurance
Taken together, the percentage of employers of a certain size and the percentage of employers that offer health insurance suggest the likelihood that a family in a given state is privately insured. It is a good indicator of the overall trend towards coverage in a state.
Medicaid Eligibility
Although they must meet or exceed a federally set standard, states have substantial discretion in setting income limits on Medicaid eligibility. States with higher maximum income limits cover a broader population, expanding access to care.States may choose to expand coverage for specific populations to promote their access. For example, the federal government says states must offer coverage to children up to age 5 in families with incomes below 133% of the federal poverty level. A state’s actual income limit for this group is a critical indicator of health access for low-income residents in a state.
Federal Match for Medicaid
The federal government shares the cost of Medicaid with states. The federal share, or match, is higher for lower income states; lower for economically better-off states. This figure is sometimes identified as FMAP, which stands for Federal Medical Assistance Percentage.
Education Expenditures
Per pupil education expenditures include average combined local, state and federal education funds per pupil for all children in a state. Per pupil IDEA expenditures are additional federal expenditures for children enrolled in special education in a state.
CHILD HEALTH SERVICESBack to top
Data in this section broadly characterize child health services in each state in terms of capacity and utilization. Use these data to understand the immediate context for services to CYSHCN in each state.
Health Care
The number of children’s hospitals is an indicator of access to pediatric specialists, whose care may be important for children with serious or complex conditions. The number of pediatricians is a general marker of access to pediatric care.Pediatricians who do not accept Medicaid payment may disproportionately exclude CYSHCN, who are eligible for Medicaid in most states at higher incomes than other children. Pediatrician participation in Medicaid is also a marker for linkage between pediatric care and public health programs and initiatives in a given state. Note that family practice physicians, who can be particularly important to access to care in rural communities, are not represented here.
Early Intervention Eligibility
Within federal guidelines, states have broad discretion in setting Early Intervention eligibility. Inclusion of “at risk” children may be a marker for overall state climate towards investment in child well-being.
Mental Health Services
No one figure easily captures access to or utilization of mental health services. One challenge is that many insurance policies place limits on mental health care benefits, so that coverage among children in a state is not necessarily an indicator of access. This indicator, children per thousand receiving state mental health services, is one marker for access to mental health care. It is most useful in relation to children with serious emotional disturbance (SED), who are most likely to need the intensive services states generally provide.Mental health services are widely identified as an unmet need, both for CSHCN in need of support or counseling and for children with SED. State mental health agencies often limit their children’s services to children with SED. Since SED diagnoses among young and school-aged children are relatively rare, the percentages of children aged 0-3 and 4-12 receiving state services is not a good indicator of access to mental health care.
Oral Health
These statistics from the National Survey of Children’s Health reflect the overall child population. Unmet dental needs are undoubtedly more common among CYSHCN, since many conditions contribute to dental impairment (e.g., by causing teeth grinding) or pose barriers to dental treatment (e.g., by making it difficult for a child to control mouth position).The second figure reflects survey responses from parents. Their accuracy is limited by parental knowledge of oral health care standards and willingness to report problems to interviewers.
Foster Care
Use caution in comparing rates across states. Absent knowledge of the strengths and weaknesses of a state’s system, it is difficult to tell if a high rate is the result of a vigilant attitude towards abuse and neglect or the result of a system that keeps children lingering in foster care for undue periods.
FACTORS INFLUENCING HEALTH INSURANCE COVERAGEBack to top
Health insurance coverage is the key to ongoing access to health care in the US. It is strongly associated with the likelihood that a child will receive basic primary and preventive care, that health problems will be identified and treated early and continuously and that a child with special health care needs will have a medical home that assures and coordinates access to specialty care and community resources.It may be useful to pose questions that connect the dots among the variables listed under the first three subheadings of this section:
  • If a state has a relatively high rate of uninsured children, but relatively low rate of uninsured CYSHCN, does that reflect special programs to maximize coverage for children at highest risk?
  • If a state has a relatively high proportion of uninsured CYSHCN, what programs do other states have that could be replicated to reduce this percentage?
  • To what extent does the state use public funding (Medicaid or SCHIP) to cover children whose families lack private coverage? Refer back to the child eligibility standard for Medicaid to see if a low-income cutoff explains the limited effect of Medicaid on child uninsurance in a state.
In general, the data elements presented here can form the foundation for any discussion of children’s health care financing and for financing of care for CYSHCN in a state.
Uninsured
The percent of all children without coverage at any point in the year may be the most important indicator we have of social investment in child health. Across states, this figure captures differences in parental employment status and associated private coverage levels, as well as state funding for public coverage of children through Medicaid and SCHIP.This is a cumulative figure reflecting experience of all children in a state over a full year. It is higher than the figure for children without coverage at any one point in time but is more informative, since it washes out seasonal variation and includes children who have off and on coverage, which does not permit high quality care.Children with special health care needs without insurance at a specific, single point in the past year, is a sharper indicator of child risk than the percentage of all children without coverage at any point. Research indicates that uninsured CYSHCN may experience delayed or missed services, leading to loss of function, exacerbation of existing conditions, or the onset of secondary conditions. These data, which come from the National Survey of CSHCN, do support useful cross-state comparisons, permitting states with relatively high rates of uninsurance to set targets for improvement.
Private Insurance Coverage
Generally, families of children with private coverage include one or more employed adults, so this is a marker of general family economic status, as well as coverage. Note, however, that private plans may limit access to specialized pediatric services needed by some CYSHCN.
Public Coverage: Medicaid Enrollment
Child Medicaid enrollment is a broad marker for state investment in children’s health: it reflects both the size of the low-income child population in a state and the breadth of its childhood Medicaid eligibility criteria.CYSHCN are more likely to be enrolled in Medicaid than other children, first, because they may be eligible at higher income levels based on participation in the SSI program and second, because of a higher prevalence of special health care needs among low income populations who would qualify for Medicaid based on income alone.Figures for number and percentage of Medicaid-enrolled children reflect different data sources and different enrollment years. To present comparable figures for enrollment of children with and without disabilities, use the percentage. Or, to cite number and percentage of Medicaid-enrolled children from the same data source, consult the source listed under “number of children enrolled in Medicaid.” The latter option will not provide comparable data for children with and without disabilities, however.The number of children enrolled in Medicaid cannot be combined with the number enrolled in SCHIP, as these also reflect different years.
Public Coverage: SCHIP Eligibility and Enrollment
Federal law permits states to offer SCHIP coverage to uninsured children in families with incomes up to 200% of the federal poverty level. Several states have room to increase enrollment by raising SCHIP income eligibility, as they do not yet cover children up to 200% of the FPL. Several other states, by contrast, have implemented programs that exceed 200% of the FPL.The percent of children enrolled in SCHIP reflects the size of the state SCHIP program; in a populous state, even a large program may cover only some uninsured children. SCHIP programs vary widely across states, but all expand coverage for near-poor children.The number of children enrolled in Medicaid cannot be combined with the number enrolled in SCHIP, as they reflect different years. The number and percentage of children enrolled in SCHIP are from one source, however, and can be looked at together.
Public Coverage: Capitated Health Plans
Some state Medicaid programs now enroll CYSHCN in capitated managed care plans. These plans have potential benefits and risks: they may increase opportunities to coordinate services for CYSHCN. They may, however, mean more restrictions on care. Stakeholders can seek to influence the quality of managed care through input into state contracts with managed care providers.
Public Coverage: SSI
The federal SSI program offers financial assistance to low-income families raising CYSHCN. The percentage of a state’s children enrolled in SSI reflects both the percent of poor and near-poor children with significant special health care needs and the efforts of state programs to link families to SSI. In many states, SSI enrollment confers automatic Medicaid eligibility, making SSI doubly important for families.SSI data reflect a different year and source from those related to Medicaid and SCHIP enrollment figures. Applying these rates to the enrollment figures in order to figure out what percentage of children with publicly funded coverage are in managed care will yield informative but imprecise estimates.
Public Coverage: TEFRA
TEFRA waivers allow states to enroll some CYSHCN in Medicaid even if family income exceeds Medicaid limits. TEFRA waivers (also called Katie Becket waivers) cover only children with intensive care needs.
Dual Public and Private Coverage
Dual coverage is an option in states which permit privately insured families to enroll their children in Medicaid as a “wraparound.” This type of secondary Medicaid enrollment may be offered free or on a sliding scale. Dual coverage helps address underinsurance, which confronts many families of whose CYSHCN have private coverage that is too limited to meet their health needs.Premium assistance programs have grown in popularity with the advent of SCHIP, in part as a strategy to ensure that low-income families do not drop their employer-sponsored coverage in order to obtain less costly SCHIP coverage for their children. While the majority of premium assistance programs are administered by state Medicaid agencies (in at least 18 states by current count), some Title V programs also provide premium assistance for CYSHCN.
Underinsured
Relatively few CYSHCN lack insurance completely. Thus, in many states, underinsurance is the major financial barrier to access for CYSHCN.Underinsured children are those who have coverage, but whose coverage is too limited to meet their needs. It may include CYSHCN whose family coverage places limits on therapies or mental health or other services that are critical to the child; it may include children who have reached the cap on their coverage for a particular service or a particular year. Data here reflect an index constructed by combining answers to several questions included in the 2001 National Survey of CSHCN.
State Mandated Benefits
Mandated benefits are benefits that private insurers must cover, by law, in a given state. In many cases, mandates apply to preventive services or to services for vulnerable populations. Note that self-insured health plans are exempt from such mandates.Some states have mandated payment for certain services that are important for CYSHCN, but could otherwise be judged “non-medical” and rejected by payers. For example, in states with a mandated benefit for PKU foods and specialized formulas, these nutritional items cannot be labeled non-medical for children who need them.
Catastrophic Coverage
States may create special programs to assure coverage in cases of extraordinary health costs. These programs often serve adults whose “pre-existing conditions” exclude them from private coverage. These programs provide an access safety net for individuals at high risk.
TITLE V PROGRAMBack to top
The Title V Program (the name refers to Title V of the Social Security Act, which is the federal law under which this program operates) is a federal-state partnership. States receive federal funding through the Title V Maternal and Child Health Block Grant; they must match those funds at the rate of 75 cents to the federal dollar. Title V programs have a broad federal mandate to build systems of care for CYSHCN in every state.It is difficult to come up with a way to characterize Title V programs: they are expected to identify and address needs that vary widely from state to state, depending on the attributes captured in earlier variables in our pro¬file: state demographics, economic well-being, children’s health infrastructure, and breadth and depth of insurance coverage. We have identified two variables we feel capture important characteristics of state Title V programs and permit reasonable state-to-state comparison.
Financing
Title V programs provide a range of services to women and children, including CYSHCN. States receive federal funds for Title V services which they must match at the rate of $.75 for each federal dollar. Most states provide more than the required match, however. The proportion of total Title V funding that comes from state, rather than federal government, is an indicator of state commitment to maternal and child health.
Family Involvement
Title V programs are required to conduct a self-assessment and report to the federal government annually on the extent to which they involve families in state program planning, implementation and evaluation. While there is a risk of bias here (high performing states may assess their own performance more rigorously than others) this is one marker of family participation in CYSHCN state-level programs and policies.