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TIPS FOR USING THE DATA

How to interpret and use the data accurately
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DATA SOURCES

Where the data comes from: full sources and methods.
View data sources.

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

Experience with the System of Care for CSHCN

Title V Program

DEMOGRAPHICS

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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.

Race/Ethnicity

The Chartbook uses broad race/ethnicity categories, for example, grouping African-American and 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.

Urban/Rural

 

Special Health Care Needs

*Estimates based on sample sizes too small to meet standards for reliability or precision.
These figures reflect parent responses to “screener” questions about the child’s use of or need for services.

Low Birth Weight

Low birth weight is defined as newborn weight below 2500 grams (about 5 lbs).

ECONOMICS

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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.

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.
Maximum allowed income for Medicaid enrollment, as a percentage of the federal poverty level, compared to the federal minimum requirement
Children’s Medicaid eligibility includes Title XXI CHIP funding for states that expanded Medicaid with CHIP funds.
All eligibility limits reflect the MAGI-converted income standards, which includes the five percentage point disregard applied to the upper limit for Medicaid coverage for each group.

Federal Match for Medicaid

The Kaiser Family Foundation website defaults to the FY 2017 FMAP. Use the drop down box under TIMEFRAME to select FY 2016 FMAP.
The federal government shares the cost of Medicaid with states. The federal share, or match, is determined by a formula in which the key variable is personal income.

Education Expenditures

Per pupil education expenditures include average combined local, state and federal education funds per pupil for all children in a state. Average IDEA expenditures per special education enrollee in a state have been added on to the general per pupil expenditure.
Combined local, state and federal per pupil education expenditures
Per pupil education expenditures include average combined local, state and federal education funds per pupil for all children in a state.
Federal per pupil IDEA expenditures for children aged 3-21 in Special Education
 

CHILD HEALTH SERVICES

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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

Number of children’s hospitals
The source of this data is a membership organization. Non-member hospitals are not reflected in the total number of children’s hospitals per state.

Early Intervention Eligibility

Eligibility for Early Intervention services includes infants and toddlers “at risk” of developmental delay
Within federal guidelines, states have broad discretion in setting Early Intervention eligibility.

FACTORS INFLUENCING HEALTH INSURANCE COVERAGE

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Mandated benefits are benefits that private insurers must cover, by law, in a given state. Note that self-insured health plans are exempt from such mandates. For a more in-depth discussion of state mandated benefits for CYSHCN, see the Catalyst Center website at http://www.hdwg.org/catalyst/close-benefit-gaps/mandated-benefits.

Uninsured

*Estimates based on sample sizes too small to meet standards for reliability or precision. 
Percentage of children without health insurance at some point in the past year
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 CHIP.

Underinsured

Relatively few CYSHCN lack insurance completely. However, private coverage is often too limited to meet their health needs, Thus, in many states, underinsurance is the major financial barrier to health care access for CYSHCN.

*Estimates based on sample sizes too small to meet standards for reliability or precision.  

Private Insurance Coverage

*Estimates based on sample sizes too small to meet standards for reliability or precision. 

Public Coverage: Medicaid, CHIP and SSI

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.
Number of children enrolled in Medicaid
Because 2011 data were unavailable, 2010 data was used for Florida, Kansas, Maine, Maryland, Montana, New Mexico, New Jersey, Oklahoma, Texas, and Utah. 
Percentage of CYSHCN enrolled in Medicaid or CHIP
*Estimates based on sample sizes too small to meet standards for reliability or precision. 
Maximum allowed income for CHIP eligibility as a percentage of the FPL
MAGI Adjusted 
Number of children enrolled in CHIP
Accounts for churn 
TEFRA Medicaid state plan option/Katie Beckett waiver for children
The TEFRA state plan option allows states to enroll CYSHCN who require the equivalent of an institutional level of care (pediatric nursing home, hospital, intermediate care facility for persons with intellectual disabilities) in Medicaid even if family income exceeds Medicaid limits. TEFRA programs are sometimes called Katie Becket waivers. These waivers also deemed parental income and served a similar population of children with the same intention of providing home and community-based services rather than institutional placement but historically preceded the TEFRA state plan option. For more information about this indicator, see the Catalyst Center article “Making It Possible to Care for Children with Significant Disabilities at Home” at http://hdwg.org/catalyst/tefraindicator.
Premium Assistance Programs
In premium assistance programs, a state agency pays all or part of the premiums for an eligible family who has access to private health insurance coverage.

Dual Public and Private Coverage

In premium assistance programs, a state agency pays all or part of the premiums for an eligible family who has access to private health insurance coverage.
Percentage of CYSHCN with a combination of public and private health insurance
Dual coverage is an option in states which permit privately insured families to enroll their children in Medicaid in order to receive supplemental coverage, sometimes known as “wrap-around” coverage. This type of secondary Medicaid enrollment may be offered free or through the payment of premiums based on a sliding scale. Dual coverage helps address underinsurance, which is a significant problem for many privately insured CYSHCN whose coverage is too limited to meet their health needs.

*Estimates based on sample sizes too small to meet standards for reliability or precision. 

Health Care Reform

Exchange overview
The term Health Insurance “Exchange” is also used interchangeably with Health Insurance “Marketplace.” 

State Mandated Insurance Benefits (for private ins

For updated information on each state’s specific mandated benefits, go to http://www.cms.gov/cciio/resources/data-resources/ehb.html
Mandated benefits are benefits that private insurers must cover, by law, in a given state. Note that self-insured health plans are exempt from such mandates. For a more in-depth discussion of state mandated benefits for CYSHCN, see the Catalyst Center website at http://www.hdwg.org/catalyst/close-benefit-gaps/mandated-benefits

Federal MCHB Core Outcomes for CSHCN

*Estimates based on sample sizes too small to meet standards for reliability or precision. 
Percentage of CSHCN whose families are partners in shared decision-making for child’s optimal health, by primary household language
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 whose families partner in decision-making at all levels and are satisfied with the services they receive (outcome successfully achieved). 
Percentage of CSHCN whose families are partners in shared decision-making for child’s optimal health, by household income
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 whose families partner in decision-making at all levels and are satisfied with the services they receive (outcome successfully achieved). 
Percentage of CSHCN whose families are partners in shared decision-making for child’s optimal health, by number of functional difficulties
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 whose families partner in decision-making at all levels and are satisfied with the services they receive (outcome successfully achieved). 
Percentage of CSHCN whose families are partners in shared decision-making for child’s optimal health, by sex
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 whose families partner in decision-making at all levels and are satisfied with the services they receive (outcome successfully achieved). 
Percentage of CSHCN whose families are partners in shared decision-making for child’s optimal health, by race/ethnicity
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 whose families partner in decision-making at all levels and are satisfied with the services they receive (outcome successfully achieved). 
Percentage of CSHCN whose families are partners in shared decision-making for child’s optimal health, by age groups
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 whose families partner in decision-making at all levels and are satisfied with the services they receive (outcome successfully achieved). 
Percentage of CSHCN whose families are partners in shared decision-making for child’s optimal health
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 whose families partner in decision-making at all levels and are satisfied with the services they receive. 
Percentage of CSHCN who receive coordinated, ongoing, comprehensive care within a medical home, by age groups
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 who receive coordinated, ongoing, comprehensive care within a medical home (outcome successfully achieved). 
Percentage of CSHCN who receive coordinated, ongoing, comprehensive care within a medical home, by sex
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 who receive coordinated, ongoing, comprehensive care within a medical home (outcome successfully achieved). 
Percentage of CSHCN who receive coordinated, ongoing, comprehensive care within a medical home, by race/ethnicity
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 who receive coordinated, ongoing, comprehensive care within a medical home (outcome successfully achieved). 
Percentage of CSHCN who receive coordinated, ongoing, comprehensive care within a medical home, by primary household language
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 who receive coordinated, ongoing, comprehensive care within a medical home (outcome successfully achieved). 
Percentage of CSHCN who receive coordinated, ongoing, comprehensive care within a medical home, by household income
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 who receive coordinated, ongoing, comprehensive care within a medical home (outcome successfully achieved). 
Percentage of CSHCN who receive coordinated, ongoing, comprehensive care within a medical home, by number of functional difficulties
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 who receive coordinated, ongoing, comprehensive care within a medical home (outcome successfully achieved). 
Percentage of CSHCN who receive coordinated, ongoing, comprehensive care within a medical home
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 who receive coordinated, ongoing, comprehensive care within a medical home. 
Percentage of CSHCN whose families have consistent and adequate private and/or public insurance to pay for the services they need, by age groups
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 whose families have adequate private and/or public insurance to pay for the services they need (outcome successfully achieved). 
Percentage of CSHCN whose families have consistent and adequate private and/or public insurance to pay for the services they need, by sex
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 whose families have adequate private and/or public insurance to pay for the services they need (outcome successfully achieved). 
Percentage of CSHCN whose families have consistent and adequate private and/or public insurance to pay for the services they need, by race/ethnicity
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 whose families have adequate private and/or public insurance to pay for the services they need (outcome successfully achieved). 
Percentage of CSHCN whose families have consistent and adequate private and/or public insurance to pay for the services they need, by primary household language
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 whose families have adequate private and/or public insurance to pay for the services they need (outcome successfully achieved). 
Percentage of CSHCN whose families have consistent and adequate private and/or public insurance to pay for the services they need, by household income
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 whose families have adequate private and/or public insurance to pay for the services they need (outcome successfully achieved). 
Percentage of CSHCN whose families have consistent and adequate private and/or public insurance to pay for the services they need, by number of functional difficulties
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 whose families have adequate private and/or public insurance to pay for the services they need (outcome successfully achieved). 
Percentage of CSHCN whose families have consistent and adequate private and/or public insurance to pay for the services they need
Corresponds with the MCHB Block Grant Performance Measure: The percent of CSHCN age 0 to 18 whose families have adequate private and/or public insurance to pay for the services they need. 
Percentage of CSHCN who are screened early and continuously for special health care needs, by age groups
Corresponds with the MCHB Block Grant Performance Measure: The percent of screen positive newborns who received timely follow up to definitive diagnosis and clinical management for condition(s) mandated by their State-sponsored newborn screening programs (outcome successfully achieved). 
Percentage of CSHCN who are screened early and continuously for special health care needs, by sex
Corresponds with the MCHB Block Grant Performance Measure: The percent of screen positive newborns who received timely follow up to definitive diagnosis and clinical management for condition(s) mandated by their State-sponsored newborn screening programs (outcome successfully achieved). 
Percentage of CSHCN who are screened early and continuously for special health care needs, by race/ethnicity
Corresponds with the MCHB Block Grant Performance Measure: The percent of screen positive newborns who received timely follow up to definitive diagnosis and clinical management for condition(s) mandated by their State-sponsored newborn screening programs (outcome successfully achieved). 
Percentage of CSHCN who are screened early and continuously for special health care needs, by primary household language
Corresponds with the MCHB Block Grant Performance Measure: The percent of screen positive newborns who received timely follow up to definitive diagnosis and clinical management for condition(s) mandated by their State-sponsored newborn screening programs (outcome successfully achieved). 
Percentage of CSHCN who are screened early and continuously for special health care needs, by household income
Corresponds with the MCHB Block Grant Performance Measure: The percent of screen positive newborns who received timely follow up to definitive diagnosis and clinical management for condition(s) mandated by their State-sponsored newborn screening programs (outcome successfully achieved). 
Percentage of CSHCN who are screened early and continuously for special health care needs, by number of functional difficulties
Corresponds with the MCHB Block Grant Performance Measure: The percent of screen positive newborns who received timely follow up to definitive diagnosis and clinical management for condition(s) mandated by their State-sponsored newborn screening programs (outcome successfully achieved). 
Percentage of CSHCN who are screened early and continuously for special health care needs
Corresponds with the MCHB Block Grant Performance Measure: The percent of screen positive newborns who received timely follow up to definitive diagnosis and clinical management for condition(s) mandated by their State-sponsored newborn screening programs. 
Percentage of CSHCN who can easily access community-based services, by age groups
Corresponds with the MCHB Block Grant Performance Measure: Percent of CSHCN age 0 to 18 whose families report that community-based service systems are organized so they can use them easily (outcome successfully achieved). 
Percentage of CSHCN who can easily access community-based services, by sex
Corresponds with the MCHB Block Grant Performance Measure: Percent of CSHCN age 0 to 18 whose families report that community-based service systems are organized so they can use them easily (outcome successfully achieved). 
Percentage of CSHCN who can easily access community-based services, by race/ethnicity
Corresponds with the MCHB Block Grant Performance Measure: Percent of CSHCN age 0 to 18 whose families report that community-based service systems are organized so they can use them easily (outcome successfully achieved). 
Percentage of CSHCN who can easily access community-based services, by primary household language
Corresponds with the MCHB Block Grant Performance Measure: Percent of CSHCN age 0 to 18 whose families report that community-based service systems are organized so they can use them easily (outcome successfully achieved). 
Percentage of CSHCN who can easily access community-based services, by household income
Corresponds with the MCHB Block Grant Performance Measure: Percent of CSHCN age 0 to 18 whose families report that community-based service systems are organized so they can use them easily (outcome successfully achieved). 
Percentage of CSHCN who can easily access community-based services, by number of functional difficulties
Corresponds with the MCHB Block Grant Performance Measure: Percent of CSHCN age 0 to 18 whose families report that community-based service systems are organized so they can use them easily (outcome successfully achieved). 
Percentage of CSHCN who can easily access community-based services
Corresponds with the MCHB Block Grant Performance Measure: Percent of CSHCN age 0 to 18 whose families report that community-based service systems are organized so they can use them easily. 
Percentage of youth with special health care needs who receive the services necessary to make appropriate transitions to adult health care, work, and independence — CSHCN ages 12-17 only, by age groups
Corresponds with the MCHB Block Grant Performance Measure: The percentage of youth with special health care needs who received the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence (outcome successfully achieved). 
Percentage of youth with special health care needs who receive the services necessary to make appropriate transitions to adult health care, work, and independence — CSHCN ages 12-17 only, by sex
Corresponds with the MCHB Block Grant Performance Measure: The percentage of youth with special health care needs who received the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence (outcome successfully achieved). 
Percentage of youth with special health care needs who receive the services necessary to make appropriate transitions to adult health care, work, and independence — CSHCN ages 12-17 only, by race/ethnicity
Corresponds with the MCHB Block Grant Performance Measure: The percentage of youth with special health care needs who received the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence (outcome successfully achieved). 
Percentage of youth with special health care needs who receive the services necessary to make appropriate transitions to adult health care, work, and independence — CSHCN ages 12-17 only, by primary household language
Corresponds with the MCHB Block Grant Performance Measure: The percentage of youth with special health care needs who received the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence (outcome successfully achieved). 
Percentage of youth with special health care needs who receive the services necessary to make appropriate transitions to adult health care, work, and independence — CSHCN ages 12-17 only, by household income
Corresponds with the MCHB Block Grant Performance Measure: The percentage of youth with special health care needs who received the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence (outcome successfully achieved). 
Percentage of youth with special health care needs who receive the services necessary to make appropriate transitions to adult health care, work, and independence — CSHCN ages 12-17 only, by number of functional difficulties
Corresponds with the MCHB Block Grant Performance Measure: The percentage of youth with special health care needs who received the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence (outcome successfully achieved). 
Percentage of youth with special health care needs who receive the services necessary to make appropriate transitions to adult health care, work, and independence — CSHCN ages 12-17 only
Corresponds with the MCHB Block Grant Performance Measure: The percentage of youth with special health care needs who received the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence. 

Financing

States receive federal funds for Title V activities which they must match at the rate of 75 cents for each federal dollar. Seeing a zero reported for this Catalyst Center state page indicator does not mean the match isn’t being met. Some states’ match comes from local sources other than the state budget. For a fuller picture of the source and amount of both state and local funds that contribute to the Title V block grant partnership, follow the link to “See State Notes for Form 2” in the original source at https://mchdata.hrsa.gov/tvisreports/FinancialData/FinancialSearch.aspx?FinSearch=A.
Percentage of Title V Block Grant Partnership Budget from State Funds
States receive federal funds for Title V activities which they must match at the rate of 75 cents for each federal dollar. Seeing a zero reported for this Catalyst Center state page indicator does not mean the match isn’t being met. Some states’ match comes from local sources other than the state budget. For a fuller picture of the source and amount of both state and local funds that contribute to the Title V block grant partnership, follow the link to “See State Notes for Form 2” in the original source at https://mchdata.hrsa.gov/tvisreports/FinancialData/FinancialSearch.aspx?FinSearch=A

Family Involvement

Family Participation in Title V CYSHCN Program Score (Maximum Possible = 18)
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.