Glossary

Waiver that allows a state to restrict Medicaid recipients choice of providers by assigning recipients to a primary care case manager or by enrolling recipients in a Health Maintenance Organization (HMO).

A treatment for children with autism spectrum disorders that uses intensive, highly repetitive teaching to modify behavior. This therapy is sometimes referred to simply as ABA.

Launched by the Maternal and Child Health Bureau (MCHB) of the Health Services and Resources Administration (HRSA) in 1990, Bright Futures is a major initiative to improve the quality of health promotion and preventive services for infants, children and adolescents. Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents was developed as part of that initiative to provide comprehensive health supervision guidelines, including recommendations on immunizations, routine health screenings, and anticipatory guidance.

The CAMHI (or CSHCN) screener is a five-item questionnaire designed to be answered by parents which can then be used to identify children who meet the definition of children with special health care needs endorsed by MCHB. Children are identified based on having functional limitations or service needs that are the result of an on-going physical, emotional, behavioral, developmental or other health condition. Named after the Child and Adolescent Health Measurement Initiative (CAHMI) at the Oregon Health and Science University, which led its development. The screener tool can be found at: http://cahmi.org/ViewDocument.aspx?DocumentID=115.

A fixed sum that an insurer pays to a health plan or provider for each person served, usually on a monthly basis and regardless of the extent of services used. The capitation payment may cover all or part of the individual’s benefits, depending on the agreement that is negotiated between the insurer and the health plan.

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)].

This term is often used interchangeably with care coordination, and in some service delivery systems the functions of a case manager and a care coordinator can be very similar. In some cases, however, case managers may function primarily as gatekeepers, with authority to approve or deny access to benefits. This is a very different role from a care coordinator, who helps families access services across different service delivery systems, provides information and referral services and helps to coordinate services across systems. For the purposes of the Chartbook, we make this distinction between care coordination and case management, recognizing that the functions often overlap in the real world.

A fund established by a state or other payer that may cover expenses for health or social support services that are not covered by an insurance plan or other benefit program. When established at the state level, these funds are usually administered by independent commissions or Title V programs and receive funding through a variety of public and private sources. The term catastrophic refers not to the condition for which the expense is incurred, but rather, to the impact on a family’s finances.

(Formerly HCFA, the Health Care Financing Administration.) The federal agency that administers Medicare and oversees the states’ administration of Medicaid.

As defined by MCHB, children with special health care needs (CSHCN) are those from birth to age 21 who have, or are at increased risk for, chronic physical, developmental, behavioral, or emotional conditions and need health and related services of a type or amount beyond that required by children generally. Also referred to as Children and Youth with Special Health Care Needs (CYSHCN).

A five-item questionnaire designed to be answered by parents which can then be used to identify children who meet the definition of children with special health care needs endorsed by MCHB. Children are identified based on having functional limitations or service needs that are the result of an on-going physical, emotional, behavioral, developmental or other health condition. Also known as the CAHMI Screener, after the Child and Adolescent Health Measurement Initiative (CAHMI) at the Oregon Health and Science University, which led its development.
The screener tool can be found at:http://cahmi.org/ViewDocument.aspx?DocumentID.

The Children’s Health Insurance Program (CHIP) is jointly financed by the Federal and State governments and is administered by the States. It provides health care coverage to uninsured children whose families meet state-specific income eligibility limits. Within broad Federal guidelines, each State determines the design of its program, eligibility groups, benefit packages, payment levels for coverage, and administrative and operating procedures.

Children began receiving coverage through CHIP in 1997 and the program helped states expand health care coverage to over 5 million of the nation’s uninsured children.

The Children’s Health Insurance Program (CHIP) provides health care coverage to uninsured children whose families meet state-specific income eligibility. Within broad Federal guidelines, each State determines the design of its program, eligibility groups, benefit packages, payment levels for coverage, and administrative and operating procedures. The program was reauthorized on February 4, 2009, when the President signed into law the Children’s Health Insurance Program Reauthorization Act of 2009 (CHIPRA or Public Law 111-3). CHIPRA finances the Children’s Health Insurance Program (CHIP) through FY 2013. It will preserve coverage for the millions of children who rely on CHIP today and provides the resources for States to reach millions of additional uninsured children.

Services delivered locally, or as close to a child’s home as possible. This type of care helps children participate fully in all aspects of family and community life.

Care for an adult or child with disabilities that is directed by that individual or his or her family, who may decide how limited funds, services, or other resources are used and who may choose to hire or direct personal care staff. May also be called Family-Directed Care. This use of the term consumer-directed should not be confused with its use to describe low-cost, high-deductible health plans.

A specified dollar amount that an insured individual must pay out-of-pocket for covered services at the time they are rendered. Also called a copay.

Health benefits that are included in an insurance policy and are therefore available for a policy holder to access.

A flat amount an insured individual must pay for a specific service before the insurer makes a payment.

The use of research-based protocols to shape the care of individuals with specific diagnoses. Patient and family education are important elements in many disease management programs.

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

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.

Medicaid benefits and services for Medicaid-enrolled children and youth under 21; designed to assure preventive treatment and to promote early diagnosis and treatment of identified health needs.

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 who are over the income limits for SSI. The FOA also amends Title V of the Social Security Act (Maternal and Child Health Services) to provide appropriations for the MCHB Division of Services for Children with Special Health Care Needs to develop Family-to-Family Health Information Centers in each of the fifty states.

A national, grassroots network of families and friends that advocates for health care services that are family-centered, community-based, comprehensive, coordinated and culturally competent for all children and youth with special health care needs; promotes the inclusion of all families as decision makers at all levels of health care; and supports essential partnerships between families and professionals. (From the Family Voices Web site, www.familyvoices.org.)

Centers run by and for families of children and youth with special needs to provide information, resources, training, and advocacy. F2F HIC help to assure that families can make informed health care decisions, have access to necessary medical care and supports, and have opportunities to participate in the development of health policies and programs.

Refers to the Federal Medical Assistance Percentage (FMAP), which is the state-specific multiplier that the federal government uses to determine the rate at which a given state’s Medicaid dollars are matched by federal dollars. The FMAP ranges from 50% – 76%, with a higher federal match going to those states with a lower per capita income.

The threshold used as a basis for determining eligibility for many public benefits programs, including Medicaid. The current FPL chart is available on the Web at http://aspe.hhs.gov/poverty/.

A payment system in which an insurer pays the provider directly for each medical service after it has been provided. FFS payment may be distinguished from capitation.

Private and/or public funding that is used to pay for services or benefits offered through an insurance policy or a private or public agency program.

A type of health insurance plan. The HMO typically is paid a capitation rate from a payer or employer for a group of enrollees. The HMO then provides all the covered health services enrollees need through a network of providers that contract with the HMO.

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.

A state program that enables people with health problems to join together to purchase health insurance, generally at higher than average premium rates.

A Medicaid waiver that permits a state to offer a wide array of home and community-based services that an individual may need to avoid more costly institutionalization.

Health service programs (often developed for a particular target population) that provide different types of services, such as medical care, mental health care, family support services or school-based services through one system or provider.

A 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.

A Medicaid benefit which states may opt to use to fund institutions (4 or more beds) for people with mental retardation. Federal regulation specifies that these institutions must provide “active treatment.”

The Henry J. Kaiser Family Foundation is a private foundation which focuses on major health care issues. The Foundation’s Web site is http://www.kff.org.

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 (now a young woman) whose mother successfully advocated for it’s creation in Iowa in 1982. It may be called by different names in different states.

Health, and in some cases, custodial and social support services, including respite, home and personal care, for people with chronic conditions, disabilities, or mental illness. Services can be provided in community-based or institutional settings.

A system that manages health care delivery in order to control costs and/or coordinate health services. Managed care usually relies on a primary care provider to serve as a gatekeeper to other services.

A benefit that must be covered by private insurers as a matter of state law. Companies that “self-insure” are exempt from such mandates.

Part of the Health Resources and Services Administration (HRSA) in the U.S. Department of Health and Human Services, the Maternal and Child Health Bureau (http://mchb.hrsa.gov) is responsible for promoting the health of mothers and children in the United States and its jurisdictions. The Title V program is administered by MCHB.

A national program that is overseen by the federal government but administered by states. Medicaid provides coverage for health care and health-related services to low-income and other specific categories of individuals.

Medicaid buy-in programs allow families who meet certain eligibility criteria (often disability-related) but who are over-income to purchase Medicaid benefits.

An approach to pediatric primary care that emphasizes proactive identification of special health needs, comprehensive care coordination, partnership between providers and families (or youth) around health decision-making, and collaboration with other community providers.

Equal health insurance coverage for mental and physical conditions; required of health insurers by law in some states. While parity is a strategy to improve mental health benefits, it does not assure comprehensive care.

A nonprofit, nonpartisan think tank concerned with state health policy and practice. The website for NASHP can be found at http://www.nashp.org

A national survey of parents of CYSHCN that looked at the demographics of special health needs, the extent and nature of insurance coverage for CYSHCN, the extent of financial hardship among families of CYSHCN and the extent and quality of their health services in each state. The survey was supported and developed by MCHB and conducted by the National Center for Health Statistics of the Centers for Disease Control and Prevention. Survey findings are available online at http://www.cshcndata.org.

A national survey of parents which focused on multiple aspects of children’s health and well-being-including physical and mental health, health care, and social well-being-as well as aspects of the family and the neighborhood that can affect children’s health, on both the national and State levels.
The survey was supported and developed by MCHB and conducted by the National Center for Health Statistics of the Centers for Disease Control and Prevention. Survey findings are available online at http://nschdata.org/Content/Default.aspx

The care of patients with progressive, incurable illness, focused on quality of life.

Parent to Parent programs offer parent to parent support as a core resource for families with children who have a special health care need, disability, or mental health issue. Through a one to one “match” experienced support parents provide emotional support to families and assist them in finding information and resources. Parent to Parent programs are committed to listening and learning from families and developing an array of services and supports in response to family identified needs.

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

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

The amount of money paid to a health plan to provide coverage for an individual or family over a specified time period.

The payment of all or part of an individual’s or family’s monthly private health insurance premium, usually by a public program such as Title V or Medicaid.

An arrangement in which a primary care provider contracts with the state or a private payer to provide primary care and care coordination or case management.

Partnerships between public and private organizations that combine resources and/or expertise to achieve programmatic goals.

Grants awarded by the Centers for Medicare & Medicaid Services to enhance home and community-based services and supports, thereby averting institutional placement of individuals with disabilities of all ages.

A contract in which an insurer is itself insured, wholly or in part, against risk.

Temporary, short-term relief for a family caregiver. Respite care may be provided by a family member, a friend or a paid employee and may involve care of a child or adult with disabilities.

The adjustment of premiums to compensate health plans or providers for the increased risks associated with demographic attributes (e.g. age) or special health needs of their clients.

Typically, a state-created, non-profit association that offers comprehensive health insurance benefits to individuals with pre-existing health problems.

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

Diagnosable mental health disorder in a child or adolescent that severely disrupts daily functioning in the home, school, or community.

A health insurance plan that limits enrollment to members with special needs, or that serves a disproportionate percentage of individuals with special needs. As used in the Chartbook, the term, “Special Needs Plan” refers to Medicaid plans that serve only CYSHCN or include a large number of CYSHCN in their membership.

Provisions that states include in contracts with managed care plans to assure that they meet the special needs of CYSHCN. Specifications may focus on assuring quality and/or access to a full range of services. Model managed care-purchasing specifications for CYSHCN were developed by the Department of Health Policy at George Washington University and are available at http://www.gwumc.edu/sphhs/healthpolicy/…/intro.html.

A program established by the Balanced Budget Act of 1997 and designed to provide health assistance to uninsured, low-income children through either expanded eligibility under state Medicaid programs or a separate state program. Also known as the Children’s Health Insurance Program or CHIP.

A state’s Medicaid program plan, federally approved under Title XIX of the Social Security Act. A state may submit amendments to modify its plan. The state plan defines which services will be covered and the terms of eligibility for those services. While state Medicaid programs must include certain basic services and eligibility standards, the term state plan often refers specifically to other, optional standards and services.

The Statewide Family Network Program assists family members to work with policy makers and service providers to improve services for children and adolescents with serious emotional disturbances and their families. It is designed to ensure that families are the catalysts for transforming the mental health and related systems in their state by strengthening coalitions among family organizations and among family members, policymakers and service providers, recognizing that family members are the best and most effective change agents. SFNs will provide information, referrals, and support to families who have a child with a serious emotional disturbance and create a mechanism for families to participate in state and local mental health services planning and policy development.

A federal program established under Title XVI of the Social Security Act that provides for monetary benefits paid to eligible recipients to offset income loss due to long-term disability. It is administered by the Social Security Administration. In many states, receiving SSI benefits automatically confers Medicaid coverage.

The number of people who accept or take-up a benefit for which they are eligible.

The provision of case management services to specific groups of Medicaid clients; designed to provide clients with needed services while promoting the cost-effective use of community resources.

A state plan option that allows Medicaid coverage 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.

The provision of health care and/or health education over a distance using telecommunications technology.

Care provided by foster parents who have received specialized training in the care of children with complex health needs. Parents in therapeutic foster homes are more closely supervised and assisted than parents in regular foster homes.

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. Part of the Work Incentives Improvement Act, which also expands Medicaid and Medicare coverage to more people with disabilities who work.

Title IV of the Social Security Act provides for federal block grants to states for Temporary Assistance for Needy Families (TANF) and for child and family services.

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.

Federal Title V funds support Maternal and Child Health (MCH) and Children with Special Health Care Needs (CSHCN) programs in each state. 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. Title V is administered nationally by the Maternal and Child Health Bureau (MCHB).

The Title V Block Grant Program has as a general purpose the improvement of the health of all mothers and children in the nation, in keeping with the national health objectives established by the Public Health Service Act for the year 2000. The Block Grant Program has three components: Formula Block Grants to 59 States and other political jurisdictions, Special Projects of Regional and National Significance (SPRANS), and Community Integrated Service Systems (CISS) Grants. (From the MCHB Web site, http://mchb.hrsa.gov)

Generally used in reference to changes required by youth with special health care needs as they go from pediatric to adult services, programs or settings.

Strategies used in the care of people living with HIV/AIDS to help promote adherence to treatment and minimize the risk of viral spread or exacerbation of symptoms in infected individuals.

Results when an insurance policy does not cover all the medically necessary services required by an individual.

Services that are not included in a typical health insurance benefit package, but that 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.