Glossary

(Appendix H of the MCH Block Grant - Application/Annual Report Guidance, Appendix of Supporting Documents)


APPENDIX H:  GLOSSARY

 

A comprehensive glossary of terms relevant to maternal and child health (MCH) practice, including services for children with special health care needs (CSHCN), is available on the MCH Navigator site.  To access the Glossary, click on: (https://www.mchnavigator.org/documents/Glossary_of_MCH_Terms_and_Acronyms_2012-11-17.pdf).  This project is administered by Georgetown University through funding provided by the Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB.)  The MCH Navigator is a learning portal for MCH professionals, students, and others working to improve the health and well-being of women, children, adolescents, and families.       

 

Definitions included in this Glossary are intended to supplement the broader set of terms that are included in the MCH Navigator Glossary.  The following list of terms and their definitions have specific relevance to the State Title V MCH Block Grants.

 

MCH Working Framework:  MCH Pyramid of Services

MCH Working Framework:  MCH Pyramid of Services

As depicted on the Revised MCH Pyramid, the working framework for the MCH Block Grant aligns with the 10 MCH Essential Services and consists of three levels.  Definitions are provided below for each level of service.  In developing systems of care, states should assure that they are family-centered, community-based and culturally competent.

 

Direct Services – Direct services are preventive, primary, or specialty clinical services to pregnant women and children, including children with special health care needs, where MCH Services Block Grant funds are used to reimburse or fund providers for these services through a formal process similar to paying a medical billing claim or managed care contracts.  State reporting on direct services should not include the costs of clinical services which are delivered with Title V dollars but reimbursed by Medicaid, CHIP or other public or private payers.  Examples include, but are not limited to, preventive, primary or specialty care visits, emergency department visits, inpatient services, outpatient and inpatient mental and behavioral health services, prescription drugs, occupational and physical therapy, speech therapy, durable medical equipment and medical supplies, medical foods, dental care, and vision care.

 

Enabling Services – Enabling services are non-clinical services (i.e., not included as direct or public health services) that enable individuals to access health care and improve health outcomes where MCH Services Block Grant funds are used to finance these services.  Enabling services include, but are not limited to: case management, care coordination, referrals, translation/interpretation, transportation, eligibility assistance, health education for individuals or families, environmental health risk reduction, health literacy, and outreach.  State reporting on enabling services should not include the costs for enabling services that are reimbursed by Medicaid, CHIP, or other public and private payers.  This category may include salary and operational support to a clinic that enable individuals to access health care or improve health outcomes.  Examples include the salary of a public health nurse who provides prenatal care in a local clinic or compensation provided to a specialist pediatrician who provides services for children with special health care needs.

 

Public Health Services and Systems Public health services and systems are activities and infrastructure to carry out the core public health functions of assessment, assurance, and policy development, and the 10 essential public health services.  Examples include the development of standards and guidelines, needs assessment, program planning, implementation, and evaluation, policy development, quality assurance and improvement, workforce development, and population-based disease prevention and health promotion campaigns for services such as newborn screening, immunization, injury prevention, safe-sleep education and anti-smoking.  State reporting on public health services and systems should not include costs for direct clinical preventive services, such as immunization, newborn screening tests, or smoking cessation.

Number of Individuals and Percentage of Populations Served by Title V (Form 5) 

Form 5a, Count of Individuals Served by Title V, enables the state to track and report on the number of who received an individually-delivered service funded in part or in full by the Title V program within the top two levels of the MCH Pyramid (direct and enabling services).  This includes individuals receiving services funded by total Federal and State dollars reported on line 8 of Form 2, and should align with the combined totals on Form 3a and 3b for direct and enabling services.  Data sources are typically reimbursement or individual client records.  Pregnant women may also receive non-pregnancy related services and be counted in other participant categories (i.e. children ages one (1) through 21 and others).  All remaining categories are mutually exclusive with CSHCN reported as a subset of all children ages one (1) through 21.  Within each reporting category, the count of individuals served should be unduplicated to the fullest extent possible.  Examples of direct and enabling services by participant category that Title V may fund in part or in full are provided below.

 

Pregnant women (through 60 days postpartum) – payment for prenatal, delivery, or postpartum care, case management, insurance eligibility assistance.

 

Infants (less than age one) – payment for well child visits, immunization, case management.

 

Children ages one (1) through 21, including CSHCN – payment for well child visits, immunization, dental sealants, school-based health center services, specialty care services and care coordination.

 

Others (women and men over 21) – payment for well-woman visits, education or family-centered care provided to parents/guardians of children.

 

Form 5b, Total Percentage of Populations Served by Title V, enables the state to track and report on the total percentage who received a Title V-supported service within all levels of the MCH Pyramid (direct services, enabling services, and public health services and systems).  The purpose of this form is to better capture the breadth of the State’s Title V program and its reach in serving the MCH population.  Included in this reporting are all individuals and populations served by the total Federal and State dollars, as reported on line 8 of Form 2, and the combined totals on Form 3a and 3b for all service levels.  Non-Title V programs that provide direct and enabling services (e.g., WIC and Home Visiting) may be included if Title V funds or staff time are used to promote or enhance services.  (Individual services that are Title V-funded may also be counted in Form 5a.)  To avoid duplication, numerators for the percentage estimate should focus on the programs and services that have the largest reach for a given population, which generally involves the public health services and systems level of the MCH Pyramid.  Approximate denominators for each population group will be provided to facilitate percentage estimation.  Within public health services and systems, only those reached by activities directly connected to promoting the access or quality of specific population-based services and systems should be counted.  Examples of these public health services and systems activities, as well as direct/enabling service partnerships, are provided below by participant category.

 

Pregnant women (through 60 days postpartum)

         Develop and/or maintain a system of risk-appropriate perinatal care designations and transfer protocols (count 100%).

         Fund local health departments to engage provider groups and promote screening for perinatal depression, smoking or substance use (count number or percent of births in funded counties).

         Partner with Medicaid or other health plans to implement a policy/procedural change to reduce low-risk cesarean delivery or promote smoking cessation (count number or % served by Medicaid or other health plans).

         Outreach to hospitals to institute a safe sleep or baby friendly policy, distribute educational materials, or participate in a QI collaborative (count number or % of births in participating hospitals).

         Partner with WIC or home visiting programs to provide staff training or otherwise promote education, screening, or referrals on smoking cessation or preventive dental services (count number or % of pregnant/postpartum women served).

 

Infants (less than age one)

         Administer, develop guidelines/standards/policies, or otherwise assure the newborn screening program (count 100%).

         Develop and/or maintain a system of risk-appropriate perinatal care designations and transfer protocols (count 100%).

         Outreach to hospitals to institute a safe sleep or baby friendly policy, distribute educational materials, or participate in a QI collaborative (count number or % of infants served).

         Partner with WIC or home visiting programs to provide staff training or otherwise promote education/counseling on safe sleep practices  (count number or % of pregnant/postpartum women served).

         Implement a statewide campaign to promote safe sleep practices (count number of Web hits).

 

Children ages one (1) through 21, including CSHCN

         Develop and maintain a statewide registry for developmental screening and follow-up (count number of children age one (1) through 5).

         Develop or promote school-based injury prevention, oral health, or physical activity programs (count number of children in participating schools).

         Partner with Medicaid, health plans, pediatric practices, or schools to implement a policy/procedural change, QI collaborative, or other campaign to promote the adolescent well visit (count number of adolescents enrolled or served by plan/practice/school).

         Fund local health departments to promote and advance the medical home model among all pediatric providers (count number of children in local counties).

         Develop and maintain a comprehensive system of services for CSHCN (count number of CSHCN served; if percentage served is lower than other population-based services for all children, report service percentage for all children as CSHCN are not excluded from general services).

 

Others (women and men over age 21)

         Implement a statewide campaign to promote the well-woman visit (count number of web hits)

         Partner with WIC or Home Visiting to improve screening/counseling for smoking cessation (count number of women with a child age one (1) or more to avoid duplication with pregnant women)

         Partner to promote family engagement services (count number of parents over 21 served)

 

Title V Program Administration 

Administrative Title V Funds - The amount of funds the state uses for the management of the Title V allocation.  This amount is limited by statute to 10 percent of the Federal Title V allotment.

 

Capacity – Program capacity includes delivery systems, workforce, policies, and support systems (e.g., training, research, technical assistance, and information systems) and other infrastructure needed to maintain service delivery and policy making activities.  Program capacity results measure the strength of the human and material resources necessary to meet public health obligations.  As program capacity sets the stage for other activities, program capacity results are closely related to the results for process, health outcome, and risk factors.  Program capacity results should answer the question, “What does the state need to achieve the results we want?”

 

Budget Period – Grant period for which funds are available for use by the state.  For the MCH Block Grant, the budget period is 24 months, beginning on October 1 of the federal fiscal year in which the funds are awarded and ending on September 30 of the following federal fiscal year. 

 

Children – A child from age one (1) through 21 years.

 

Data Systems Development – Development of data management systems (electronic or other) or linking of existing databases to support states’ ability to collect, tabulate, analyze, and report data accurately.

 

Early Neonatal PeriodPeriod covered by the first week after birth or an age of less than seven days.

 

Federal Allocation – The funding provided to the states under the Federal Title V Block Grant in any given fiscal year; applies specifically to the Application Face Sheet (SF-424) and Form 2. 

 

Federal Fiscal Year:  The federal government’s fiscal year begins on October 1 and ends on September 30 of the following year.

Government Performance and Results Act (GPRA) – Federal legislation enacted in 1993 that requires Federal agencies to develop strategic plans, prepare annual plans setting performance goals, and report annually on actual performance.

 

Infants – Children in their first year of life (<365 days).   

 

Jurisdictions – The following nine jurisdictions receive Title V Maternal and Child Health Block Grant Program funding:  the District of Columbia, the Republic of the Marshall Islands, the Federated States of Micronesia, the Republic of Palau and the U.S. territories of the Commonwealth of Puerto Rico, the Virgin Islands, Guam, American Samoa, and the Commonwealth of the Northern Mariana Islands.

 

Life Course Theory (LCT) – A conceptual framework that helps explain health and disease patterns, particularly health disparities, across populations and over time.  Instead of focusing on differences in health patterns based on one disease or condition at a time, LCT points to broad social, economic and environmental factors as underlying causes of persistent inequalities in health for a wide range of diseases and conditions across population groups.  LCT is population focused, and firmly rooted in social determinants and social equity models.  Though not often explicitly stated, LCT is also community (or “place”) focused, since social, economic and environmental patterns are closely linked to community and neighborhood settings.[1]    

 

Local – Funds derived from local health jurisdictions within the state, which are used for MCH program activities and reported on the Application Face Sheet (SF 424) and Form 2.

 

Low Income – An individual or family with an income that is determined to be below the income official federal poverty line, as defined by the Office of Management and Budget and revis­ed annually in accordance with section 673(2) of the Omnibus Budget Reconciliation Act of 1981.  [Title V, Sec. 501 (b)(2)]

 

Maintenance of EffortState will maintain the level of funds being provided solely by such state for maternal and child health programs at a level at least equal to the level provided in   FY 1989.

 

Needs Assessment – A process to understand the strengths and needs of the health service system within a community or population.  For maternal and child health purposes, needs assessment efforts consider the following components: 1) health status, 2) health service utilization, 3) health systems capacity, and 4) population/ community characteristics and contextual characteristics.

 

Neonatal Periodperiod covered by the first month after birth or an age of less than 28 days.

 

Newborn – A recently born infant, usually less than one month old.

 

Objectives – A statement of intention with which actual achievement and results can be measured and compared.  SMART objectives are Specific, Measurable, Achievable, Relevant and Time-phased.  See also Objectives and Performance Objectives within the Performance Measurement Section.   

 

Other Federal Funds – Federal funds other than the Title V Block Grant that are under the control of the person responsible for administration of the Title V program and reported on the Application Face Sheet (SF 424) and Form 2.  These funds may include, but are not limited to: WIC, EMSC, Healthy Start, SPRANS, HIV/AIDs monies, CISS funds, MCH targeted funds from CDC, MCH Education funds and Medicaid Federal Medical Assistance Percentage (FMAP). 

 

Others (Class of Individuals) – Women and men, over age 21.

 

PerinatalPeriod pertaining to immediately before and after birth.  For example, the definition of perinatal mortality refers to fetal and early neonatal death between 28 weeks or more gestation through the first week of life (less than seven days after birth).   

 

Postneonatal PeriodPeriod of infant age from one month (28 days) up to one year (<365 days). 

 

Pregnant Woman – A female from the time that she conceives to 60 days after birth, delivery, or expulsion of fetus.

 

Prenatal – Occurring or existing before birth, referring to both the care of the woman during pregnancy and the growth and development of the fetus.

 

Priority Needs – Title V legislation direct states to conduct a statewide, comprehensive MCH Needs Assessment every five years to identify the need for preventive and primary care services for pregnant women, mothers, infants, children and children with special health care needs.  From this assessment, states select seven to ten priorities for focused programmatic efforts over the five-year reporting cycle. 

 

Program Income – Funds collected by State MCH agencies from sources generated by the State’s MCH program to include insurance payments, Medicaid reimbursements, HMO payments, etc., as reported on the Application Face Sheet [SF 424] and Form 2.

 

State – Terminology used in this Guidance to reference the 50 states and the nine jurisdictions.  (See also “Jurisdictions”)

 

State Funds – The state’s required matching funds (including overmatch) in any given year, as reported on the Application Face Sheet [SF 424] and Form 2.

 

Strategies – General approaches taken to achieve objectives: activities are specific actions to implement the strategies.  For example, a strategy may be to improve provider training with activities that could include developing a training module, delivering or promoting the training, and monitoring utilization and/or knowledge improvement.  Program activities for implementing the identified program strategies are discussed and updated annually as part of the State Action Plan narrative.

 

Technical Assistance (TA) – The process of providing advice, assistance, and training by an expert with specific technical/content knowledge to address an identified need.  Technical Assistance relationships are program-focused, and may use an interactive, on-site/hands-on approach as well as telephone or email assistance.  Technical Assist­ance delivery is short in duration, customized to meet the needs of the client, and offers prescriptive solutions to a specific issue.

 

Title V of the Social Security Act – The authorizing legislation for the Maternal and Child Health Services Block Grant to States Program.

 

Title V Reporting Form 6, Deliveries to Pregnant Women Served by Title V – Unduplicated number of deliveries to pregnant women who were provided prenatal, deli­very, or post-partum services through the Title V program during the reporting period.

 

Title V Reporting Form 6, Infants Served by Title V – The unduplicated count of infants provided a direct service by the State’s Title V program during the reporting period.

 

Title XIX of the Social Security Act – The authorizing legislation for the Medicaid program.

 

Title XIX Reporting on Form 6, Pregnant Women Eligible for Title XIX – The number of pregnant women who delivered during the reporting period and were eligible for the State’s Title XIX (Medicaid) program.

 

Title XIX Reporting on Form 6, Infants Eligible for Title XIX – The number of infants eligible for the State’s Title XIX (Medicaid) program.

 

Title XXI of the Social Security Act – Children’s Health Insurance Program (CHIP) financed via the Centers for Medicare and Medicaid Services (CMS).  The purpose of this title is to provide funds to states to enable them to initiate and expand the provision of child health assistance to uninsured, low-income children in an effective and efficient manner that is coordinated with other sources of health benefits coverage for children.  (Sec. 2101. [42 U.S.C. 1397aa])

 

Total MCH Funding – All of the MCH funds administered by a State MCH program.  Included in this sum total are:  1) the Federal Title V Block grant allocation; 2) the Applicant’s funds, which consists of the unobligated balance from the previous year’s MCH Block Grant allocation, the state’s total matching funds for the Title V allocation (match and overmatch); 3) the Local funds, which are the total amount of MCH dedicated funds from local government within the state); 4) Other Federal funds (monies other than the Title V Block Grant that are under the control of the person responsible for administration of the Title V program), and 5) Program Income (funds collected by State MCH agencies from insurance payments, Medicaid, HMO’s, private grants, etc.)

 

Unobligated Balance – The amount of unexpended funds from the previous project period for Title V MCH Block Grant, as reported as Applicant funds on the Application Face Sheet [SF 424] and as Unobligated Balance on Form 2.

 

Performance Measurement

Evidence-based or –Informed Strategy Measure (ESM) –Developed by the state, ESMs assess the outputs of State Title V strategies and activities contained in the State Action Plan.  The development of ESMs is guided through an examination of evidenced-based or evidence-informed strategies, and determining what components are meaningful, measurable, and achievable.  The main criteria for ESMs are in being meaningfully related to the selected NPM through scientific evidence or theory and being measurable by the state with improvement achievable in multiple years of the five-year reporting cycle.

 

Evidence-based or –Informed Strategy Measure (ESM) Objectives – The objectives for activities and interventions that drive the achievement of higher-level objectives by the State Title V program.

 

Objectives – The yardsticks by which an agency can measure its efforts to accomplish a goal.  (See also Performance Objectives)

 

Outcome Measure – The ultimate focus and desired result of any set of public health program activities and interventions is an improved health and well-being outcome.  Health and well-being outcomes are usually longer term and tied to the ultimate program goal.  Morbidity and mortality statistics are indicators of achievement of health outcomes.  Other outcomes reflect commonly accepted indicators of a highly functioning system of care for children with special health care needs and their families, positive outcomes, outcomes which are legislatively mandated or are a legislative focus, outcomes where the prevalence is increasing, and developmental outcomes where a fully established measure does not exist.

 

Performance Indicator – The statistical or quantitative value that expresses the result of a performance objective.

 

Performance Measure – An intermediate outcome on the path toward a longer term outcome measure of health and well-being that is used to more directly assess the impact of a program.  Positive health behaviors and access to quality health care are common intermediate outcomes that may lead to health, reduced morbidity and mortality, or highly functioning systems of care.  For example, to reduce infant mortality, State Title V programs may work to promote safe sleep practices or access to quality well-woman care.  The performance measure is phrased as a quantitative indicator, such as a rate or percentage.  For example, “Percentage of infants placed to sleep on their backs.

 

Performance Measurement – The collection of data on, recording of, or tabulation of results or achievements, usually for comparison to a benchmark.

 

Performance Objectives – A statement of intention with which actual achievement and results can be measured and compared.  Performance objective statements clearly describe what is to be achieved, when it is to be achieved, the extent of the achievement, and the target populations.  For example: “Increase the percentage of infants placed to sleep on their backs in State X by 10% over the next 5 years.”

 

Risk Factors – Public health activities and programs that focus on reduction of scientifically established direct causes of, and contributors to, morbidity and mortality (i.e., risk factors) are essential steps toward achieving desired health outcomes.  Changes in behavior or physiological conditions are the indicators of achievement of risk factor results.  Results focused on risk factors tend to be intermediate term.  Risk factor results should answer the question, “Why should the state address this risk factor (i.e., what health outcome will this result support)?”

 

Risk Factor Objectives – Objectives that describe an improvement in risk factors (usually behavioral or physiological) that are associated with morbidity and mortality.

 

Targets – An aspired outcome that is explicitly stated, e.g. “Attain 90% of timeliness in reporting” or ”Achieve 100% completeness of reporting, etc.  In this Guidance, “Targets” is often used interchangeably with “Objectives.”

 

Collaborative Learning, Innovation and Quality Improvement

Aim Statement – A written measureable description of desired outcomes used in a quality improvement initiative.  A strong AIM statement outlines what is to be accomplished, quantifies the changes that are to be achieved and sets a date by which the goals will be reached. 

 

Blueprint for Change – A tool to help define action steps for a team’s strategic priorities.

 

CoIIN versus COIN – The Collaborative Improvement and Innovation Network (CoIIN) initiative extends the Collaboration Innovation Network (COIN) model to include the concept of improvement in recognition of the need to strengthen existing investments in maternal and infant health as well as to develop innovative, new approaches.

 

Collaborative Innovation Network (COIN) – A cyberteam of self-motivated people with a collective vision, enabled by the Web to collaborate in achieving a common goal by sharing ideas, information and work.[2]

 

Collaborative Learning – Projects using this model enable learners of different abilities and interests to work jointly in small groups to complete a project or solve a problem.

 

Collective Impact – A concept that provides a framework for bringing diverse people and organizations together in a structured way to achieve social change.[3]

 

Driver Diagram – A logic chart that organizes the different aspects of an improvement project so key interventions and relationships between these interventions may be clearly understood by all involved.

 

Infant Mortality CoIIN Framework – A framework that presents a theory of the relationships between (1) key domains of influence (e.g., engaged leadership or innovation), (2) the periods of engagement, and (3) the strategies priorities that will be employed to reduce infant mortality rates in the U.S. 

 

Learning Collaborative – A group of individuals or organizations that come together for a defined period of time to work together to improve process relevant to a specific topic.  Members of a learning collaborative generally agree upon a shared set of data to measure and meet regularly to learn from each other and project experts.

 

Learning Sessions – Members of learning collaboratives generally agree to a regular schedule of multi-day meetings throughout the collaborative.  These meetings may be in person or virtual.  The learning sessions allow Collaborative faculty and partners to share latest research or important information on the topic of the collaborative, and they allow participants to share their work and to learn from each other. 

 

Perinatal Periods of Risk (PPOR) – Both a community approach and an analytic framework for investigating and addressing high infant mortality rates in urban settings.  The overall intent of the PPOR approach is to develop a simple method that can be used by communities to mobilize and prioritize prevention efforts.  PPOR brings community stakeholders together to build consensus, support and partnership around infant mortality rates.[4]  

 

Primary Drivers – Found in the CoIIN framework and driver diagrams, drivers are system components, factors or broad improvement areas that contribute directly to achieving the stated outcome.  For example, if the outcome is reducing infant mortality, a strategic priority/primary driver might be to improve access to and quality of prenatal care for women. (See Strategic Priorities.)

 

Potential Action/Change Concept – Actionable steps for change targeted at improving specific processes, often originating from brainstorming sessions with the team and evidence-based best practices. 

 

Quality Improvement in Public Health – The use of a deliberate and defined improvement process, which is focused on activities that are responsive to community needs and improving population health.  This effort is continuous and ongoing to achieve measureable improvements in the efficiency, effectiveness, performance, accountability, outcomes and other indicators of quality in services or processes, which achieve equity and improve the health of the community.

 

Strategic Priorities – Found in the CoIIN framework and driver diagrams, these priorities are system components, factors or broad improvement areas that contribute directly to achieving the stated outcome.  For example, if the outcome is reducing infant mortality, a strategic priority/primary driver might be to improve access to and quality of prenatal care for women. 

 

Family Partnership

Cultural CompetenceA set of values, behaviors, attitudes, and practices within a system, organization, program or among individuals and which enables them to work effectively cross culturally.  Further, cultural competence refers to the ability to honor and respect the beliefs, language, inter-personal styles and behaviors of individuals and families receiv­ing services, as well as staff who are providing such services.

 

Culturally Sensitive – The recognition and understanding that different cultures may have different concepts and practices with regard to health care; the respect of those differences and the development of approaches to health care with those differences in mind.

 

Family Partnership For purposes of the MCH Block Grant, family partnership is defined as patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system—direct care, organizational design and governance, and policy making—to improve health and health care. [5] This partnership is accomplished through the intentional practice of working with families for the ultimate goal of positive outcomes in all areas through the life course.  Additional references include, but are not limited to, several comprehensive reports written by the Association of Maternal and Child Health Programs (AMCHP) that describe family engagement efforts in State Title V programs.  These references are available at: http://www.amchp.org/programsandtopics/family-engagement/Pages/default.aspx.

 

Patient- and Family-Centered Care – “An approach to the planning, delivery, and evaluation of health care that is grounded in a mutually beneficial partnership among patients, families, and providers that recognizes the importance of the family in the patient’s life.”[6]  “This approach recognizes that the perspectives and information provided by families, children, and young adults are essential components of high-quality clinical decision-making, and that patients and family are integral partners with the health care team.”[7]

 

Children with Special Health Care Needs

Care Coordination Services – Services that promote the effective and efficient organization and utilization of resources to assure access to necessary comprehensive services for children with special health care needs and their families.  [Title V Sec. 501(b)(3)]  Pediatric care coordination is “patient and family centered, assessment driven, team based.[8]  Care coordination services facilitate linkage of children and their families with appropriate services and resources that meet their health and social needs to achieve optimal health.  This care is to be distinguished from case management which primarily focuses on the children’s medical issues.[9]

 

Case Management Services – Services that assure access to quality prenatal, delivery and postpartum care for pregnant women; and services that assure access to quality preventive and primary care services for infants up to age one (1).  [Title V Sec. 501(b)(4)]

 

Children With Special Health Care Needs (CSHCN) – Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.[10]  For Form 5 reporting, only CSHCN ages one (1) through 21 are captured separately as a subset of all children to avoid duplication with infants who are commonly served universally through newborn screening

 

Systems of Services for Children with Special Health Care NeedsA system of services for children with special health care needs is a “family-centered coordinated network of community-based services designed to promote the healthy development and well-being of children and their families”.[11]  Additionally, a “well-functioning system of services will coordinate and integrate the full range of needed child and family services, including health care, education, and social services, with the goal of optimizing outcomes for the children and families it serves.”[12]

 

Key frameworks describing the system of services for CSHCN:

         Six Core Outcomes for CSHCN[13],[14]

o       Family Professional Partnership

o       Medical Home

o       Adequate Health Insurance

o       Early and Continuous Screening and Surveillance

o       Easy to Use Services and Supports

o       Transition to Adult Health Care

 

         National Standards for Systems of Care for Children and Youth with Special Health Care Needs

o       The National Systems Standards describe the process and provide a framework necessary to build an effective system of services for CSHCN. The standards are divided into ten core domains, and they are based on the six core outcomes listed above for CSHCN.  Additional information is available at:  http://www.amchp.org/AboutTitleV/Resources/Documents/Standards%20Charts%20FINAL.pdf.

 

Additional MCH Terms

Acquired Brain InjuryInjury to the brain that is not hereditary, congenital, degenerative, or induced by birth trauma.  Traumatic brain injury is a type of acquired brain injury.

 

Bullying Unwanted, aggressive behavior among school aged children that involves a real or perceived power imbalance.  The behavior is repeated, or has the potential to be repeated, over time.  Additional guidance on bullying surveillance is available at: http://www.cdc.gov/violenceprevention/pdf/bullying-definitions-final-a.pdf.

 

Clinical Genetics – Clinical and laboratory services for individuals and families with, or at risk for, health problems with a heritable component.  The application of the principles of genetics and genomics to predict, diagnose, and treat disease and improve health.

 

CommunityA group of individuals living as a smaller social unit within the confines of a larger one due to common geographic boundaries, a common work environment, common interests and other uniting factors.

 

Community-based CareServices provided within the context of a defined community.

 

Community-based Service SystemAn infrastructure that operates across service sectors that facilitates the integration of services in several dimensions, which includes organization, delivery, and financing.[15]

 

Genetic Counseling: The process of helping people to understand and adapt to the medical, psychological, and familial implications of genetic contributions to disease.  This process integrates: interpretation of family and medical history to assess the chance of disease occurrence or recurrence; education about inheritance, testing, management, prevention, resources and research; counseling to promote informed choices; and adaptation to the risk or condition.

 

Health Care System – The entirety of the agencies, services, and providers involved or potentially involved in the health care of community members and the interactions among those agencies, services and providers.

 

Human Genetics: The science of genes, heredity and variation in human organisms

 

Health Care Transition – The process of moving from a child to an adult model of health care.  The goal of health care transition (HCT) is to optimize health and assist youth in reaching their full potential, which requires an active process over time that addresses many aspects of a youth’s life, including medical, psychosocial, educational, and vocational needs.  This process also ensures continuity of developmental and age appropriate health care services.  Successful transition involves the engagement and participation of the pediatric and adult medical home team, the family and other care givers, and the individual youth collaborating in a positive and mutually respectful relationship.[16]  For more information see http://www.gottransition.org/

 

Medical Home – An approach to providing comprehensive, high quality health care that is accessible, family-centered, continuous, comprehensive, coordinated and compassionate.[17]  Care occurs in an environment of trust and mutual responsibility between the family, patient, and primary care provider.  The principle of family-centered care defines the care to be received in a medical home while a team-based approach is central to delivering care in the medical home.  Within the medical home, care coordination addresses interrelated medical, dental, mental and behavioral, social, educational, and financial needs to achieve optimal health and wellness outcomes.  Additional information is available at: https://medicalhomeinfo.aap.org/Pages/default.aspx.

 

Morbidity – A general term for any health condition that encompasses diseases, injuries, and impairments in a population or group.

 

Mortality – A general term for the incidence of deaths in a population or group.  The number of deaths may be reported by age, sex, race/ethnicity, geographic area, and cause of death.

 

Mortality RateThe number of deaths occurring in a particular population  during a specific time period, as calculated by the number of deaths in that group (numerator) divided by the total population (denominator) and expressed as per 1,000 live births (infant mortality rate only) or per 100,000 population, generally at mid-year.

 

National Improvement Partnership Network (NIPN) – A network of states who have an Improvement Partnership (IP), which is a durable collaborative of public and private partners that use the science of quality improvement and a systems approach to improve health care infrastructure and practice.  Established in 2009, NIPN is led by the Vermont Child Health Improvement Program (VCHIP).

 

National Survey of Children’s Health (NSCH)Sponsored by the Maternal and Child Health Bureau of the Health Resources and Services Administration, the NSCH examines the physical and emotional health status and health service needs and utilization patterns of children ages 0-17 years of age.  Special emphasis is placed on factors that may relate to well-being of children, including medical homes, family interactions, parental health, school and after-school experiences, and safe neighborhoods.  The NSCH was fielded three times as a telephone-based survey, in 2003, 2007 and 2011-2012, yielding both state- and nationally-representative data.  In 2016, the NSCH underwent a significant redesign, becoming an annual address-based mailed survey with a web-based response option that merged content from the previous NSCH and National Survey of Children with Special Health Care Needs (NS-CSHCN).  https://mchb.hrsa.gov/data/national-surveys

 

National Survey of Children with Special Health Care Needs (NS-CSHCN) – This survey was sponsored by the Maternal and Child Health Bureau of the Health Resources and Services Administration.  The NS-CSHCN was conducted three times as a telephone-based survey, in 2001, 2005-2006 and 2009-2010, and yielded state- and nationally-representative data on the health care experiences of CSHCN and their families.  In 2016, the NS-CSHCN was merged with the NSCH to provide one unified survey administered annually by mail with a web-based response option. Additional information is available at:  https://mchb.hrsa.gov/data/national-surveys.         

 

Newborn Screening (NBS) – The process of testing newborn babies for some serious, but treatable, conditions.  Four million newborns each year are tested for conditions on the Recommended Uniform Screening Panel (a set of conditions recommended by the Secretary of HHS for NBS) that are not apparent at birth but require early intervention and treatment to mitigate brain and organ damage, severe illness, and life-threatening complications associated with these conditions.  NBS can include a heel stick, hearing screen, and pulse oximetry.  The conditions that newborn babies are screened for varies by state.  When a newborn screening result is out-of-range, further diagnostic testing is required to confirm or specify the results.

 

Newborn Screening Long-term Follow-up – Comprises the assurance and provision of ongoing quality chronic disease management, condition-specific treatment, and age-appropriate care throughout the lifespan of individuals identified with a condition included in newborn screening.   

 

Newborn Screening Short-term Follow-up – The process of ensuring that all newborns are screened, that an appropriate follow-up caregiver is informed of results, that confirmatory testing has been completed, and that the infant has received a diagnosis and, if necessary, treatment is initiated. 

 

Preventive Services – Activities aimed at reducing the incidence of health problems or disease prevalence in the community, or the personal risk factors for such diseases or conditions.

 

Preventive Oral Health Services – Activities that aim to improve and maintain good oral health and function by reducing the onset and/or development of oral diseases or deformities and the occurrence of oro-facial injuries.  Examples of preventive oral health services include, but are not limited to, oral hygiene instructions, fluoride treatment, and Dental Sealants.

 

Primary Care/Primary Care Services – The provision of comprehensive personal health services that include health maintenance and preventive services, initial assessment of health problems, treatment of uncomplicated and diagnosed chronic health problems, and the overall management of an individual’s or family’s health care services.

 

Recommended Uniform Screening Panel (RUSP) – The RUSP is a list of disorders that are recommended by the Secretary of the Department of Health and Human Services (HHS) for states to screen as part of their state universal newborn screening (NBS) programs.  Disorders on the RUSP are chosen based on evidence that supports the potential net benefit of screening, the ability of states to screen for the disorder, and the availability of effective treatments.  It is recommended that every newborn be screened for all disorders on the RUSP.  Most states screen for the majority of disorders on the RUSP; newer conditions are still in process of adoption. Some states also screen for additional disorders.  Although states ultimately determine what disorders their NBS program will screen for, the RUSP establishes a standardized list of disorders that have been supported by the Advisory Committee on Heritable Disorders in Newborns and Children and the Secretary of HHS.

 

Safe Infant Sleep Environment – Infant is placed to sleep on its back, in its own crib without blankets or soft items or bed-sharing.  Additional information is available at:  http://pediatrics.aappublications.org/content/early/2011/10/12/peds.2011-2284

 

Sudden Unexpected Infant Deaths (SUID) - Deaths in infants less than one year of age that occur suddenly and unexpectedly, and in whom the cause of death is not immediately obvious prior to investigation.

 

Sudden Infant Death Syndrome (SIDS) – The sudden death of an infant less than one year of age that cannot be explained after a thorough investigation is conducted, including a complete autopsy, examination of the death scene, and review of the clinical history.

 

Systems Development – Activities involving the creation or enhancement of organizational infrastructures at the community level for the delivery of health services and other needed ancillary services to individuals in the community by improving the service capacity of health care service providers.

 

Traumatic Brain Injury – An alteration in brain function, or other evidence of brain pathology caused by an external force.


[2]  Gloor, Peter A.  “Swarm Creativity.”  Competitive Advantage through Collaborative Innovation Networks. (2006)

[5] Carman K., Dardess, P., Maurer, M., Sofaer, S., Adams, K., Bechtel, C., Sweeney, J. Patient and Family Engagement: A framework for understanding the elements and developing interventions and policies. Health Affairs. 2013; 32:223-231.

[6] Committee on Hospital Care and Institute for Patient- and Family-Centered Care. Patient- and Family-Centered Care and the Pediatrician’s Role. Pediatrics. 2012; 129: 394

[7] Ibid.

[8] Antonelli RC, McAllister J, Popp J.  2009. Developing Care Coordination as a critical component of a high performance pediatric health care system.  Washington DC: The Commonwealth Fund

[9] Turchi RM, Mann M.  Building a medical home for children and youth with special health care needs.  In:  Hollar D, ed. Handbook of Children with Special Health care Needs.  New York, NY:  Springer-Verlag; 2013:399-418.

[10] McPherson M., Arango P., Fox H. A new definition of children with special health care needs. Pediatrics. 1998; 102: 137-140.

[11] Perrin, J., Romm, D., Bloom, S., Homer, C., Kuhlthau, K., Cooley, C., Duncan, P., Roberts, R., Sloyer, P., Wells, N., Newacheck, P. A family-centered, community-based system of services for children and youth with special health care needs. 2007; 161 (10): 933-936.

[12] Ibid.

[13] National Agenda for Children with Special Health Care Needs: Achieving the Goals 2000. Washington, D.C.: Health Resources Services Administration; 1999.

[14] Strickland, B., van Dyck, P., Kogan, M., Lauver, C., Blumberg, S., Bethell, C., Newacheck, P. Assessing and ensuring a comprehensive system of services for children with special health care needs: a public health approach. 2011; 101 (2): 224-231.

[15] U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children with Special Health Care Needs Chartbook 2009–2010. Rockville, Maryland: U.S. Department of Health and Human Services, 2013.

[16] American Academy of Pediatrics. American Academy of Family Physicians and American College of Physicians. Transitions Clinical Report Authoring Group. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;

[17] American Academy of Pediatrics. Organizational principles to guide and define the child health care system and/or improve the health of all children. Pediatrics; 110 (1): 2002



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