Glossary

1915(b) Waiver

A Medicaid waiver that allows a state to restrict Medicaid recipients’ choice of providers by assigning recipients to a primary care case manager, managed care plan (MCO) or other health plan. Visit the Medicaid website to learn more about the 1915 (b) Waiver.

1915(c) Waiver

Also known as a Home and Community-Based Services (HCBS) waiver, this type of Medicaid wavier allows states to provide Medicaid and additional support services that make it possible for individuals who require an institutional-level of care to live at home and participate in community life. HCBS/1915 (c) waiver availability and eligibility vary by state. Visit the Medicaid website to learn more about the 1915(c) Waiver.

Applied Behavior Analysis Therapy (ABA)

ABA is a treatment for children with autism spectrum disorders that uses intensive, highly repetitive teaching to modify behavior.

Benefits Counseling/Navigation

Providing an individual with information and guidance about what services and/or items are covered under a health insurance plan.

Bright Futures

In 1990, the Maternal and Child Health Bureau (MCHB) of the Health Services and Resources Administration (HRSA) and the Centers for Medicare and Medicaid services (CMS)] convened a multidisciplinary group of experts in pediatric care and family representatives to envision a bright future for every child. This major initiative to improve the quality of health promotion and preventive services for infants, children, and adolescents resulted in the Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents. They address primary and preventive care, such as immunization and vital screenings. They also provide a chart that includes screenings, assessments, physical examinations, procedures, and timing of anticipatory guidance recommended for each age-based visit. Find more information about Bright Futures on their website.

CAHMI or Children with Special Health Care Needs (CSHCN) screener

The Children and Adolescent Health Measure Initiative (CAMHI) screener is a five-item screening tool used to identify children and youth with special health care needs (CYSHCN) based on the Maternal and Child Health Bureau definition. Find more information about the CAHMI or Children with Special Health Care Needs (CYSHCN) screener on the CAHMI website.

Care Coordination

Services that promote the effective and efficient organization and utilization of resources among all health providers and services to ensure access to necessary comprehensive services for children with special health care needs and their families.

Catastrophic Relief Fund

This is a fund established by a state or other payer through various public and private sources that may pay expenses incurred by families for health or social support services that are not covered by an insurance plan or other benefit program. Independent commissions or Title V programs usually administer these funds. The term catastrophic refers to the impact on a family’s finances and not the child’s condition.

Children and Youth with Special Health Care Needs (CYSHCN)

As defined by the Maternal and Child Health Bureau (MCHB), CYSHCN are those from birth to age 21 who have, or are at increased risk for, chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally. Also referred to as Children with Special Health Care Needs (CSHCN). For more details, see the CYSHCN description on MCHB website.

Other entities, including state Medicaid agencies or state legislatures, may define CYSHCN differently.

Children’s Health Insurance Program Reauthorization Act of 2009 (CHIPRA)

Signed into law in February 2009, this federal legislation extended funding for the Children’s Health Insurance Program (CHIP) to September 2013. It also included performance bonuses for states that implemented new ways to identify and enroll all children who were eligible for CHIP and Medicaid. In addition, CHIPRA 2009 gave states the option to provide Medicaid and CHIP to lawfully residing immigrant children and pregnant women who have been in the country less than five years.

Co-insurance

The percent of the allowed amount for a covered service that the insured pays. For example, if a health insurance plan’s allowed amount for an office visit is $100 and the co-insurance is 20%, the individual would pay 20% of $100, and the insurance company would pay the remaining costs.

Consumer Assistance

Providing the resources necessary to help education and provide accurate information to consumers who are making difficult health care decisions. Consumer assistance may be provided by state insurance departments, independent state consumer assistance agencies, or non-profit organizations. For more information, visit the CMS.gov website.

Consumer-Directed Care

Care for a child or adult with disabilities that is directed by that individual or his or her family. The individual/family member can decide how funds, services, or other resources are used and who may hire or direct personal care staff. Sometimes also known as family-directed care or self-directed care services. This use of the term consumer-directed should not be confused with its use to describe low-cost, high-deductible health plans.

Copayment

A fixed dollar amount that an insured individual must pay out-of-pocket for covered services at the time they are rendered. Also called a copay. For more detail about Copayment, visit the Healthcare.gov website.

Coverage Counseling

Providing the education and resources necessary for families and individuals to understand which health insurance programs they are eligible for, the pros and cons of different insurance programs and to weigh them, and how to apply for coverage.

Deductible

The specified maximum dollar amount a health plan requires an insured individual to pay for covered services before the insurer begins to pay.

Disease Management

Used by private and public health plans, disease management programs are designed to identify and encourage individuals with chronic conditions to follow evidence-based recommendations for care. This includes taking medications, eating a healthy diet, and being physically active. Patient and family education are important elements in many disease management programs.

Durable Medical Equipment (DME)

Health-related equipment that is not disposable, such as wheelchairs, walkers, or oxygen concentrators.

Early Intervention (EI)

Developmental services provided to children birth to age 3 who have, or in states with broad eligibility, are at risk of developmental delay. State Early Intervention programs can receive federal education funds to subsidize these services. For more information about Early Intervention services and eligibility, visit the Parent Center Hub website.

Early Periodic Screening, Diagnostic, and Treatment (EPSDT)

EPSDT is a federally mandated Medicaid benefit that every state must provide to Medicaid-enrolled children and youth under 21. EPSDT ensures children receive comprehensive health services and supports that are tailored to their individual needs. See the EPSDT description on Medicaid website.

Essential Health Benefits

The ten categories of health services that the Affordable Care Act (ACA) requires all qualified health plans sold in the Marketplaces and new plans sold in the individual and small group market to provide. To learn more, visit the Essential Health Benefits description on Healthcare.gov website.

Family Opportunity Act (FOA)

Federal legislation that gives states the option of providing Medicaid coverage to children who meet the disability standard used in the Supplemental Security Income (SSI) program, but whose family income is higher than the income limits for SSI or Medicaid but less than 300% federal poverty level (FPL). States may charge premiums for families who “buy in” to the Medicaid program for a child with a disability.

Family-to-Family Health Information Centers (F2F HIC)

Centers run by and for families of children and youth with special health care needs (CYSHCN) that provide assistance in navigating the systems of health care services and supports. F2F HICs share information and provide resources to help families access necessary medical care and supports, partner with professionals to make informed health care decisions, and have opportunities to participate in the development of health policies and programs. To learn more about how Family-to-Family Health Information Centers support families of CYSHCN, visit the Family Voices website.

Federal Medical Assistance Percentage (FMAP)

The federal matching dollars that states receive for every dollar they spend to support their Medicaid program. FMAP is based on the state-specific multiplier that the federal government uses to determine the percentage of each state’s federal match. The FMAP ranges from 50% – 83%, with a higher federal match going to those states with a lower per capita income. Note: eFMAP is the enhanced Federal Medical Assistance Percentage that states receive for CHIP. The Affordable Care Act (ACA) included a 23 percentage point increase, which went into effect in October 2015. The eFMAP range is now 88% – 100%. The additional funding for CHIP frees up state funds that can still be used for CHIP, or redirected to Medicaid, or used in other parts of the state’s budget. Learn more about Federal Medical Assistance Percentage description on U.S. Department of Health and Human Services website.

Federally Qualified Health Centers (FQHC)

Federally Qualified Health Centers (FQHC) are community-based healthcare providers that receive funding from HRSA Health Care Center Program to provide comprehensive primary care services in underserved areas. To learn more, visit the HRSA website.

Health Insurance Marketplace (also called Marketplace or Exchange)

Created as part of the Affordable Care Act (ACA), the Marketplaces allow people to purchase insurance and be assessed for Medicaid and CHIP eligibility. This online resource allows individuals, families, and small businesses to compare and shop for health insurance. Depending on household income, purchasers may also be eligible for tax credits and other subsidies to make insurance more affordable. Some states operate a state-based Marketplace, while others have a federally supported, state partnership, or federally facilitated Marketplace. To learn about the Health Insurance Marketplace visit the Healthcare.gov website.

Health Maintenance Organization (HMO)

A type of health insurance plan where individuals (or employers) pay a fixed or capitated amount for all health services provided by a specific, contracted network of providers.

Health-Based Payment

A reimbursement strategy that pays more per patient to health plans that serve patients with complex or intense medical needs, including individuals with disabilities. Provides an incentive for plans to provide good quality care to individuals with costly care needs, as opposed to limiting care to avoid financial risk.

High Risk Pool

An insurance program that allows individuals who have health problems or have trouble getting insurance to purchase health insurance, generally at higher than average premium rates

Home- and Community-Based Services (HCBS) Waiver

Home- and Community-Based service (HCBS) waivers allow a state to offer Medicaid beneficiaries a wide array of services in their own home or community rather than institutions or other isolated settings. These programs serve a variety of targeted populations groups, such as people with intellectual or developmental disabilities, physical disabilities, and/or mental illnesses. Learn more about the Home and Community Based Services description on the Medicaid website.

Insurance Navigator

An individual or organization trained to help consumers look for health coverage options through the Marketplace, including assisting with eligibility and enrollment. The services are free to consumers if accessed through the Marketplace. To learn more, visit the HealthCare.gov website.

Integrated Care Models

Private or public health service programs, often led by a primary care team (and often developed for a specific target population) who work together with patients and families to provide a full array of coordinated services, such as medical care, mental health care, family support services, or school-based services in a cost-effective way. Integrated care models may have alternative financing and reimbursement mechanisms, such as capitation.

Intermediate Care Facility (ICF)

An ICF is a long-term care facility that provides health and related services above the level of basic custodial care, but below the level of care available in a hospital or skilled nursing facility. An Intermediate Care Facility for Individuals with Intellectual Disability (ICF/ID) is a particular type of ICF. This is an optional Medicaid benefit states may use to provide services and supports that promote the independence of people with intellectual disabilities.

Katie Beckett Waiver

The Katie Beckett waiver allows children who would otherwise be institutionalized or hospitalized due to their complex needs to be cared for at home and still maintain Medicaid eligibility by waiving their parent’s income. It is named after the child whose mother successfully advocated for its creation in Iowa in 1982. This type of waiver has different names in different states; not every state has this waiver.

Long-Term Services and Supports (LTSS)

These are person-driven services and supports provided by Medicaid to individuals with chronic conditions, disabilities, or mental illness. Services can be provided in community-based or institutional settings. For more information about Long Term Services and Supports, visit the Medicare website.

Managed Care

A health care delivery system that coordinates health services, while managing utilization of services, quality, and cost (generally through capitation). Managed care may rely on a primary care provider to provide referrals and document the medical necessity for other services. The capitation may be used to purchase services from a network of providers. For more detail, see the Managed Care description on the Medicaid.gov website.

Maternal and Child Health Bureau (MCHB)

MCHB is part of the Health Resources and Services Administration (HRSA) in the U.S. Department of Health and Human Services (HHS). It is responsible for promoting the health of mothers and children in the United States and its jurisdictions. MCHB administers the Title V program. For more information about MCHB, visit the HRSA website.

Medicaid

A public benefits program, jointly funded by state and federal dollars. The federal government oversees the program, but it is administered by the states. Medicaid provides coverage for health care and health-related services to low-income and other specific categories of individuals, such as children and youth with disabilities. To learn more about Medicaid and enrollment, visit the Medicaid website.

Medicaid Buy-In Program

Medicaid buy-in programs allow families who meet certain eligibility criteria (often disability-related) but whose household income exceeds a state’s income eligibility limits to purchase Medicaid benefits.

Medical Home

An approach to providing primary care that emphasizes proactive identification of special healthcare needs, comprehensive care coordination, partnership between providers and families (or youth) around health decision-making, and collaboration with other community providers, including schools. The National Resource Center for Patient/Family-Centered Medical Home provides information about medical homes for families and caregivers, as well as information about state initiatives.

Mental Health Parity

This refers to equal health insurance coverage for the treatment of mental health, substance use disorder and medical/surgical health conditions. The Affordable Care Act (ACA) requires all health plans, including grandfathered and self-funded plans, to provide mental health parity. For more detail about Mental Health Parity, see the Government Publishing Office publication.

National Survey of Children’s Health (NSCH)

The National Survey of Children’s Health (NSCH) is an annual, cross-sectional, address-based survey that collects information on the health and well-being of children ages 0-17, including health care, family, and community-level factors that can influence health. Data from NSCH reflect information collected from parents/caregivers and are the only source of both national- and state-level estimates on key measures of child health. Among other changes, the 2016 National Survey of Children’s Health started integrating two surveys: the previous NSCH and the National Survey of Children with Special Health Care Needs (NS-CSHCN)

For more details, see the National Survey of Children’s Health description on the Data Resource Center for Child and Adolescent Health website.

Palliative Care

This refers to care focused on improving quality of life for patients with progressive, incurable illness.

Parent-to-Parent (P2P) Support

P2P programs offer parent-to-parent support as a core resource for families with children and youth with special health care needs (CYSHCN), disabilities, behavioral, or mental health issues. Through a one-to-one match, experienced parents provide emotional support to families and assist them in finding information and resources. To learn more, visit the Parent-to-Parent USA website.

Patient Protection and Affordable Care Act (ACA)

Signed into law on March 23, 2010, the Affordable Care Act (ACA) is federal healthcare reform legislation. Its main goal is to create new pathways to affordable insurance and reduce the number of people without insurance, promote primary and preventive care, and decrease the growth of the cost of health care. To learn more, see the Patient Protection and Affordable Care Act (ACA) description on Healthcare.gov website.

Pay-for-Performance (P4P)

A reimbursement strategy that pays healthcare providers according to how well they meet certain quality standards.

Personal Care Assistance

Services designed to help an individual with a disability perform activities of daily living at home or in the workplace. A Personal Care Attendant (PCA) provides these services.

Premium

The amount of money paid to a health plan to provide coverage for an individual or family over a specified time period. Payments are typically made monthly, but may be yearly.

Premium Assistance

The payment of all or part of an individual’s or family’s private health insurance premium, usually by a public program such as Title V, Medicaid, or CHIP. For more information, see the Premium Assistance description on the Department of Labor website.

Primary Care Case Management (PCCM)

A type of service delivery model where beneficiaries choose a primary care provider who will deliver primary care services, provide referrals to specialists, and coordinate care.

Respite Care

This refers to temporary, short-term care for a child or adult with disabilities, chronic health conditions, and/or complex health conditions that provides relief for a family caregiver. Respite care may be provided by another family member, a friend, or a paid employee. Respite care can be provided on a temporary basis, emergencies, or long-term, in a variety of settings including the family home, respite centers, or residential care facilities.

Risk Adjustment

Statistical or economic adjustment of premiums to compensate health plans or providers for the increased financial risks associated with providing health services to subgroups of patients who share demographic or health need attributes (e.g., age or special health care needs of their clients).

Self-Insured Plan

Coverage offered by a company, typically a large employer, that chooses to pay employees’ healthcare costs directly, instead of purchasing health insurance coverage.

Serious Emotional Disturbance (SED)

SED is diagnosable mental health disorder in a child or adolescent that severely disrupts daily functioning in the home, school, or community. Learn more about Serious Emotional Disturbance on the SAMHSA website.

Supplemental Security Income (SSI)

A federal program established under Title XVI of the Social Security Act that provides monetary benefits to eligible recipients to offset income loss due to long-term disability. It is administered by the Social Security Administration. In many states, individuals eligible for SSI automatically receive Medicaid coverage. For more information about Supplemental Security Income, visit the Social Security website.

Targeted Case Management (TCM)

The provision of case management services to specific groups of Medicaid clients, which are designed to provide “targeted” individuals with needed services while promoting the cost-effective use of community resources.

TEFRA State Plan Option for Severely Disabled Children

The Tax Equity and Fiscal Responsibility Act (TEFRA) is a state plan option that creates a pathway to Medicaid for certain children under age 19 with complex disabilities or special health care needs to be cared for at home instead of an institution even if family income exceeds state Medicaid eligibility limits. A TEFRA state plan option, while different from a Katie Beckett waiver, has the same goals: to honor a family’s wish to care for a child with complex health needs at home instead of in an institutional setting.

Telemedicine or Telehealth

This is the provision of health care and/or health education using telecommunications technology, rather than in-person encounters.

Ticket to Work

A voluntary program in which qualified SSI recipients can obtain vocational rehabilitation, employment or other support services from an approved provider to help them go to work and achieve employment goals. Ticket to Work is part of the Work Incentives Improvement Act of 1999, which also expands Medicaid and Medicare coverage to more people with disabilities who work. For more detail, see the Ticket to Work description on the Social Security website.

Title IV

Title IV of the Social Security Act provides federal block grants to states for Temporary Assistance for Needy Families (TANF) and for child and family services. To learn more about Title IV, visit the Social Security website.

Title IV-E

Title IV-E is a subpart of Title IV. This program provides federal reimbursement to states for the costs of children receiving care in foster homes. To learn more about Title IV-E, visit the Social Security website.

Title V

Title V of the Social Security Act provides federal block grants to states to support Maternal and Child Health (MCH) and Children and Youth with Special Health Care Needs (CYSHCN) programs. These programs may provide direct care, but generally focus on provision of wrap-around and population-based services (e.g. immunization) and on assuring capacity for maternal and child health care. The Maternal and Child Health Bureau (MCHB) administers Title V nationally. Learn more about Title V on the Social Security website.

Title V Block Grant

The Title V Block Grant is a fixed amount of federal funds that the 59 states and jurisdictions receive to promote the health of all mothers and children, including CYSHCN. The three Block Grant components are Formula Block Grants, Special Projects of Regional and National Significance (SPRANS), and Community Integrated Service Systems (CISS) Grants. At least 30% of funds must be spent on preventive and primary care for children. Another 30% must be used to ensure CYSHCN and their families have access to family-centered, coordinated, community-based systems of care. Other services include pre- and post-natal care for low-income and at-risk women, and toll-free hotlines families can call for information and referral to other needed services and supports. Title V Block Grant description on HRSA website.

Transition (Also Health Care Transition (HCT))

A term generally used in reference to supports and services required by youth with special health care needs as they go from pediatric to adult services, programs, or settings. Visit the Got Transition website to learn more about transition.

Underinsurance

Describes health insurance that does not cover all the medically necessary services an individual requires, and/or does not provide access to all needed services, and/or the out-of-pocket expenses are not affordable. Underinsurance (also called inadequate insurance) is a cause of family financial hardship and medical debt.

Value-Based Purchasing

A model of healthcare financing that pays providers for quality and value of services, not just the volume of services provided. Sometimes referred to as “pay-for-performance”. To learn more, see the definition on the HealthCare.gov website.

Wrap-around

Services that are not included in a typical health insurance benefit package, but which enhance a child’s functional status or overall well-being or facilitate access to care. Wrap-around services may include family support, respite care, and adaptive technologies.