The Grandfamilies & Kinship Support Network urges government agencies, nonprofits, and tribal organizations to work across systems (e.g., child welfare, education) to best support kinship/grandfamilies. Doing so can be challenging, in part because each system uses different terms and acronyms. This glossary seeks to help professionals understand each other better so that they can collaborate more effectively. We are grateful to our partners at USAging for suggesting this resource and supplying the definitions for the aging terms.
Use the letter links below to jump to a specific letter of the alphabet, or use your browser’s Find function to search for a specific term or acronym. Please note that we are publishing this glossary now in the hopes that it will be helpful, but it is still a work in progress, and we will be adding more terms. Please reach out to us at info@gksnetwork.org if you would like to recommend additional terms for inclusion.
A
Activities of Daily Living (ADLs)
In an aging and/or disability services environment, this term refers to certain activities that a person must perform successfully to live independently. These activities include transferring (moving from bed to chair and back), eating, getting dressed/undressed, using the toilet, and bathing. Eligibility for some aging-related services (including some Medicaid-paid services) may require that an applicant needs supervision or assistance with one or more ADLs.
Administration for Children and Families (ACF)
ACF, a division of the U.S. Department of Health and Human Services, is charged with promoting the economic and social well-being of families, children, individuals, and communities. ACF includes the Administration on Children, Youth and Families, which houses the Children’s Bureau and the Family & Youth Services Bureau. ACF also includes offices devoted to early childhood development, child support, family assistance, and refugee resettlement, among others. For more information, visit the ACF homepage.
Administration for Community Living (ACL)
ACL is the principal agency within the U.S. Department of Health and Human Services that is designated to lead aging and disability programs. It is comprised of the Administration on Aging; the Administration on Disabilities; the National Institute on Disability, Independent Living, and Rehabilitation Research; and numerous offices and centers. For more information, see the U.S. Administration for Community Living’s Support to Caregivers webpage.
Administration on Aging (AoA)
Part of the U.S. Administration for Community Living (ACL), the AoA is the principal agency designated to carry out the provisions of the Older Americans Act, providing services and supports for older adults and family caregivers (including kin/grandfamily caregivers). For more information, see the U.S. Administration on Aging.
Adoption
Adoption is the most permanent option available to kinship/grandfamilies who want and/or need to establish a legal relationship between the caregiver and the child. Adoption severs the birth parents’ legal rights and responsibilities with regard to the child and turns the grandparent or other kin caregiver into the parent in the eyes of the law. Adoption creates a forever family and is very important for some children and families, but it can be very expensive to obtain and may not be the right choice for all children and families. Laws and programs concerning adoption vary around the country. There is a federal adoption tax credit available to all adoptive parents, and several states also have adoption tax credits for state income taxes. For families adopting children from foster care who are considered to have “special needs,” there are federal and state programs providing ongoing financial assistance. For more information, see the Adoption and Guardianship for Children in Kinship Foster Care page of the Generations United website, which has links to a brief, a national comparison chart on adoption and guardianship, and state-specific comparison charts.
Adult Day Programs/Services
Adult Day Programs/Services support a specific population of older adults. While Adult Day provides a variety of social and health promotion activities for their older adult participants much like other Aging Network programs, they also provide physical assistance and/or supervision for participants with dementia and/or physical or cognitive disabilities. Some also offer transportation and therapeutic services. For more information, see the National Adult Day Services Association.
Adult Protective Services (APS)
Functioning similarly to child protective services, local and state APS agencies investigate suspected cases of abuse, neglect, and exploitation of vulnerable adults, including older adults and adults with disabilities. APS agencies also may arrange for supportive services and may petition for adult guardianship in cases of confirmed abuse, neglect, or exploitation. Some APS agencies also investigate suspected cases of self-neglect. For more information, see the U.S. Administration for Community Living’s Supporting Adult Protective Services webpage or the National Adult Protective Services Association.
Age-in-Place
This term is used to describe the concept and common goal of being able to remain living well at home and in the community—with or without professional assistance—as one ages, rather than needing to live in institutional facilities like nursing homes.
Aging and Disability Resource Center (ADRC)
Established under a 2003 agreement between the U.S. Administration for Community Living and the U.S. Centers for Medicare & Medicaid Services, ADRCs exist nationwide to act as a state or local “one-stop shop” for people to get answers about planning for and accessing long-term care services and supports, specifically home- and community-based services but also including those offered by assisted living and nursing homes. For more information, see the U.S. Administration for Community Living’s Aging and Disability Resource Centers webpage.
Aging Network
The Aging Network is comprised of government agencies and community-based organizations that provide or oversee the provision of services and supports for older adults and family caregivers nationwide. Many in the Aging Network also support kin/grandfamily caregivers. Specifically, the Aging Network includes the U.S. Administration on Aging, State Units on Aging, Area Agencies on Aging, Title VI Native American Aging Programs, and community-based service providers. For more information, see the U.S. Administration for Community Living’s Aging and Disability Networks webpage.
Area Agencies on Aging (AAAs)
Part of the Aging Network, these local agencies provide or arrange to provide services and supports for older adults and family caregivers in their planning and service areas. AAAs (referred to as “triple A’s”) are required by the Older Americans Act (OAA) to develop and fund or provide certain core services, including services to protect the safety and rights of older adults at home and in long-term care facilities; nutrition services like home-delivered and congregate meals; evidence-based health promotion and disease prevention programs; supportive services like in-home assistance, transportation, and Information and Referral services to connect people to resources; and programs to support family caregivers of older adults. AAAs also have the option to support kin/grandfamily caregivers with some of their OAA caregiving funding, and many do. Around the country, AAAs may be located within county, city, or regional government agencies or nonprofit organizations. Not all AAAs include the words “Area Agency on Aging” in their names, but they all share the AAA designation and roles. For more information. Contact local AAAs via ACL’s Eldercare Locator.
C
California Evidence-Based Clearinghouse for Child Welfare (CEBC)
The CEBC strives to identify and publicize information about evidence-based programs and practices related to the child welfare system. The Program Registry is a searchable database that includes programs from around the country, not just programs in California. The Selecting & Implementing Programs section of the website offers guidance, tools and resources, and implementation examples. For more information, visit the California Evidence-Based Clearinghouse for Child Welfare. Please note that a program’s inclusion in the CEBC does not ensure that it will be included in the Title IV-E Prevention Services Clearinghouse as the Title IV-E Clearinghouse has different evidence-based standards.
Centers for Independent Living (CILs)
Funded by the U.S. Administration for Community Living, CILs (pronounced “sills”) provide individuals with disabilities with peer-led guidance and supports that are targeted to promote self-sufficiency and self-determination. For more information, see the U.S. Administration for Community Living’s Centers for Independent Living webpage.
Children’s Health Insurance Program (CHIP)
The Children’s Health Insurance Program (CHIP) covers children who are in families with incomes too high to qualify for Medicaid but too low to afford private coverage. CHIP provides coverage through both Medicaid and separate CHIP programs. CHIP is funded by states and the federal government and is managed by states according to federal requirements. For more information, see the Children’s Health Insurance Program (CHIP) page of Medicaid.gov.
Coinsurance
This health insurance term is similar to an insurance co-pay, but, while a co-pay is usually a set amount of money, co-insurance is a percentage payment. Some health insurance policies (including Original Medicare) have a coinsurance payment.
Commodity Supplemental Food Program
Also called “Commodity Foods,” this federally funded program, under the U.S. Department of Agriculture, provides no-cost, nutritious surplus foods to low-income individuals age 60 and older. For more information, see the U.S. Department of Agriculture.
Congregate Meals
Funded under the Older Americans Act, this service (administered through Area Agencies on Aging and Title VI Native American Aging Programs) provides no-cost hot and nutritious mid-day meals to adults age 60 and older in a group or “congregate” setting, such as a senior center or restaurant. For more information, see the U.S. Administration for Community Living’s Nutrition Services webpage.
Custody [of Children and Youth]
There are two general types of custody of children: physical and legal. Physical custody is held by anyone who is raising a child, with or without legal custody. Physical custody alone does not provide the caregiver with the authority to consent to a child’s health care or make educational decisions on their behalf. The right and responsibility to make these decisions is a hallmark of legal custody. When a child is in foster care, they are in the legal custody of the government. A kin/grandfamily caregiver who is not caring for kin in foster care, and who has not received a signed delegation of parental authority or power of attorney from the parents, typically must go to court and seek a legal relationship to access services and supports on behalf of the child. For more information, see the Care & Custody webpage on Grandfamilies.org.
Customary Adoption
As explained in the Customary Adoption section of Part 1 of the Policy Toolkit the Network published with our partners at the National Indian Child Welfare Association, “Indigenous peoples worldwide have long practiced customs around adoption without termination of parental rights. This practice is known as customary adoption. In most tribes, an adoption is achieved through a customary process or ceremony that creates a parent-child relationship.”
D
Dual Eligible
Within aging services, this term is used to describe individuals who are eligible for both Medicare and Medicaid.
Dual Involved Youth
Youth who are involved with both the child welfare and juvenile justice systems.
E
Early Intervention
Early intervention is the term used to describe the services and supports that are available to families with babies and young children up to age three with developmental delays and disabilities. Children under the age of three qualify for a free screening; no doctor’s referral needed. Early intervention may include speech therapy, physical therapy, and other types of services based on the needs of the child and the family. Early intervention can have a significant impact on a child’s ability to learn new skills and overcome challenges and can increase success in school and life. Publicly funded early intervention programs are available in every state and territory, and every eligible child can receive services for free or at reduced cost. For more information and a toll-free number for each state, see the Early Intervention page of the Centers for Disease Control and Prevention website.
F
Family Finding
See Kin-Finding below.
Family First Prevention Services Act (FFPSA)
The Family First Prevention Services Act is a federal law that seeks to enhance support services for families in order to help children remain at home, reduce the unnecessary use of congregate care (i.e., group homes and other institutions), and build the capacity of communities to support children and families. The law allows states, tribes, and territories to use federal funds for prevention services, including kinship navigator programs. For more information, see the Child Welfare Capacity Building Collaborative’s FFPSA page.
Family Group Decision Making Meetings/Family Team Meetings
A group of practices used around the world to assist with making difficult decisions to separate children from their parents is called Family Group Decision-Making (FGDM). FGDM models include Family Group Conferencing, Team Decision Making, Family Team Conferencing, and Ohana Conferencing, all practices that bring together families and others interested in child and family well-being to make safety (and, in some cases, child welfare removal) decisions. See this article in Science Direct.
Family Resource Centers (FRCs)
Family Resource Centers (FRCs) are the most typical kind of Family Support and Strengthening programs. They are known by many different names across the country, including Family Centers, Family Success Centers, Family Support Centers, and Parent Child Centers. They may be community-based or school-based. They serve as welcoming hubs of community services and opportunities designed to strengthen families. Their activities and programs, typically provided at no or low cost to participants, are developed to reflect and be responsive to the specific needs, cultures, and interests of the communities and populations served. There is no dedicated federal funding for FRCs, and yet there are more than 3,000 of them nationwide.” See National Family Support Network.
Fictive Kin
Fictive kin are people who are treated as family but are not related by blood or marriage. They are often described as a “family of choice” or “chosen kin.”
Formal Caregivers
See Inside/Outside the System [the Foster Care or Child Welfare System] below.
Foster Care Look Back
Foster care was removed from the welfare program more than 25 years ago, and the Aid to Families with Dependent Children (AFDC) program was dismantled more than a decade ago. Nonetheless, a child today is only eligible for federal foster care support if the family from which the child is removed would have been eligible for AFDC in 1996. Moerover, the 1996 AFDC income standard has not been adjusted for inflation, resulting in fewer children eligible for federal foster care support each year.
Friendly Visitor
Within aging services, this term frequently is used to describe an individual (usually a volunteer) who pays social visits to an older adult, typically in the older adult’s home.
Foster Care
Foster care is intended to be the temporary, court-monitored care of children whom the government has removed from their parents due to substantiated allegations of abuse or neglect. The children are in the legal custody of the government and in the physical custody of either licensed foster parents (including kin), unlicensed kin caregivers, or a group home or other institutional setting. Federal law has a stated preference for children and youth in foster care to be placed with kin as a first choice, rather than placing them with unfamiliar foster parents. See 42 U.S.C. § 671(a)(19). For more information, see the federal Child Welfare Information Gateway’s Foster Care webpage.
Foster Care Approval/Licensure
Foster care approval/licensure is the process by which adults are certified to serve as foster parents in a particular jurisdiction. There are federal safety requirements with which all jurisdictions receiving federal support must comply when creating their own standards and processes. Under a new federal rule, released in September 2023, title IV-E agencies may implement separate foster care licensing standards for kin.
Foster Care Maintenance Payments (FCMPs)
Foster care maintenance payments (FCMPs) are monthly payments made by the foster care system to support the needs of children in foster care. A new federal rule, released in September 2023, mandates that title IV-E agencies that implement separate licensing standards for kin must pay duly licensed or approved kin caregivers the same FCMPs that they would pay to any other licensed foster parent.
Foster Parent [also known as Resource Family]
A foster parent is an individual who is licensed or certified by a state, tribe, or territory to care for children who are in foster care. For more information, see the Cornell Law School’s definition of foster parent.
G
Grandfamilies, Kinship Families, and Kinship/Grandfamilies
Throughout this website and our resources, we use the terms “kinship/grandfamilies,” “grandfamilies,” and “kinship families” to refer to all families in which grandparents, other relatives, or close family friends are raising children whose parents are unable to do so. A longer explanation of our use of these terms is available here.
Grandfamily Caregivers, Kin Caregivers, and Kin/Grandfamily Caregivers
We use the terms “kin/grandfamily caregivers,” “grandfamily caregivers,” and “kin caregivers” to refer to the adults who raise children in kinship/grandfamilies – whether they are grandparents, other family members, close family friends, or other individuals with a preexisting relationship with the family or the child. A longer explanation of our use of these terms is available here.
Guardianship [of Children & Youth]
Guardianship is a permanency option that may be available to kinship/grandfamilies who want and/or need to establish a legal relationship between the caregiver and the child. In some jurisdictions, guardianship as such may not be an option, and instead may be called legal custody or another term. The most significant difference between guardianship and adoption is that guardianship does not sever the birth parents’ legal rights and responsibilities with regard to the child or turn the grandparent or other kin caregiver into the parent in the eyes of the law. Although laws dictating guardianships differ among states and tribes, guardianships must be granted by a court and can be revoked by a court upon a showing of changed circumstances. Children exiting foster care into guardianships may be eligible for financial support from guardianship assistance programs (GAP), and, under federal law, they remain eligible for adoption assistance if they later choose to transition from a guardianship to an adoption. For more information, see the Adoption and Guardianship for Children in Kinship Foster Care brief from our parent organization, Generations United.
Guardianship Assistance Program (GAP)
Guardianship Assistance Programs (GAP) exist in most states, the District of Columbia, and over 10 tribes. GAP is designed for children and youth who have been in foster care with a licensed relative foster parent providing care for at least six months and for whom reunification with their parents and adoption are not appropriate options. GAP provides ongoing monthly guardianship assistance payments to caregivers to help them meet the needs of the children in their care. For more information, see the Adoption and Guardianship for Children in Kinship Foster Care brief from our parent organization, Generations United.
H
Head Start
Head Start supports early learning and development, health, and family well-being for children from birth through age five and their families. Head Start services are available at no cost to children ages birth to five in eligible families. Early Head Start serves families with children from birth to age three, and many also serve expectant families. Head Start preschool services work with families with children ages three to five. Many programs operate both Head Start preschool and Early Head Start services. Programs deliver child development services in center-based, home-based, or family child care settings. For more information, see the Head Start Approach page on the federal Early Childhood Learning & Knowledge Center website.
Hidden Foster Care
Hidden foster care is a term that is gaining widespread use, and it essentially refers to kinship diversion.
I
Indian Child Welfare Act (ICWA)
“ICWA” stands for the Indian Child Welfare Act, which is a federal law passed in 1978. According to the Network’s partner – the National Indian Child Welfare Asssociation, – “ICWA was passed in response to the alarmingly high number of Indian children being removed from their homes by both public and private agencies. The intent of Congress under ICWA was to ‘protect the best interests of Indian children and to promote the stability and security of Indian tribes and families’ (25 U.S.C. § 1902). ICWA sets federal requirements that apply to state child custody proceedings involving an Indian child who is a member of, or eligible for membership in, a federally recognized tribe. Child custody proceedings under ICWA include hearings focused on foster care placement, termination of parental rights, adoption, and placements related to status offenses. Status offenses are actions committed by a child that if committed by an adult would not be deemed a criminal act, such as truancy from school or being incorrigible.” See NICWA’s Frequently Asked Questions, What is ICWA and why was it passed?.
Individualized Education Program/Plan (IEP)
IEPs are legal documents created with the intention of helping children with disabilities receive the services and supports they need to promote the best outcomes for them in school. Understood, a nonprofit organization, has a page with more information about IEPs, as well as a page explaining the differences between 504 plans and IEPs.
Individuals with Disabilities Education Act (IDEA)
The Individuals with Disabilities Education Act (IDEA) is a federal law that makes available a free, appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services for those children. Infants and toddlers with disabilities, birth through age two, and their families receive early intervention services under IDEA Part C. Children and youth ages 3 through 21 receive special education and related services under IDEA Part B. Additionally, the IDEA authorizes various grants. For more information, see the U.S. Department of Education’s About IDEA webpage.
Informal Caregivers
See Inside/Outside the System [the Foster Care or Child Welfare System] below.
Information and Referral/Assistance (I&R or I&A or I&R/A)
I&R/A specialists provide no-cost information about the range of services and supports that exist for older adults and frequently assist older adults and family caregivers in accessing those services and supports. A 2022 USAging survey found that all Area Agencies on Aging nationwide provide I&R/A on older adult services and supports. Many also offer I&R/A services and supports targeted to kinship/grandfamilies.
Instrumental Activities of Daily Living (IADLs)
Instrumental Activities of Daily Living are activities that, when performed successfully by an individual, greatly improve one’s quality of life. These activities include shopping, housekeeping, food preparation, using transportation, money management, and medication management. Unlike Activities of Daily Living, IADLs are not seen as essential to living independently. Eligibility for some aging-related services (including some Medicaid-paid services) may require that an applicant needs supervision or assistance with one or more IADLs.
Inside/Outside the System [the Foster Care or Child Welfare System]
These terms differentiate between children who are being raised in kinship/grandfamilies while in the legal custody of the foster care/child welfare system and those who are not. Data shows that the vast majority of children in kinship/grandfamilies are outside the foster care/child welfare system. Many agencies and organizations use the terms “formal” and “informal” to refer to caregivers who are raising children inside and outside the child welfare system, respectively. The Network typically prefers not to use those terms in order to promote clarity and to ensure that we are recognizing the legitimacy of all families.
K
Kin Caregivers, Grandfamily Caregivers, and Kin/Grandfamily Caregivers
We use the terms “kin/grandfamily caregivers,” “grandfamily caregivers,” and “kin caregivers” to refer to the people who raise children in kinship/grandfamilies – whether they are grandparents, other family members, close family friends, or other individuals with a preexisting relationship with the family or the child. A longer explanation of our use of these terms is available here.
Kin-Finding
The Network uses the term “kin-finding” to refer to what other entities may know as “family-finding.” Kin-finding encompasses child welfare agency practices to identify and connect with extended family members for children who have been removed from their parents. Kin-finding recognizes the principle that children in foster care do better when they are placed with family members or other adults whom they or their family know and trust. See the Network’s Kin-Finding Toolkit.
Kin-First Culture
According to Grandfamilies.org, a child welfare system with a kin-first culture is one that “consistently promotes kinship placement, helps children in foster care maintain connections with their family, and tailors services and supports for kinship foster families.” For more information, see the Grandfamilies.org Creating a Kin First Culture webpage.
Kinship Diversion
When a child comes to the attention of the child welfare system and a caseworker decides to remove them from their home and place them with kin without formally placing them in the custody of the child welfare system, the child is said to be diverted from foster care. Kinship/grandfamilies that form in this way are not subject to government oversight, but they also do not receive foster care maintenance payments or other services or supports from the government. Often, the caregivers who take a child into their home in this way are not informed about this trade-off. They frequently report that they were told that they could either take the child or the child would go into foster care, with the implication or outright statement that they might not see the child again. Once they learn more, some families remain satisfied that they kept the child out of the foster care system and do not have to submit to the appointments and scrutiny of foster care while others would be willing to trade in some of their autonomy for the institutional supports offered through the foster care system. For more information, see the Kinship Diversion page of Grandfamilies.org.
Kinship Navigator
Kinship navigator programs offer information, referral, and follow-up services to caregivers to link them to the benefits and services that they and the children need. Some of the programs are over 20 years old and provide robust case management, concrete goods, and other supportive services to the families, while others may be limited to information and referral. Due to federal funding opportunities that became widely available starting in 2018, many programs are relatively new. Kinship navigator programs are most helpful when they serve all kinship families, regardless of child welfare involvement. However, because the majority of kinship families have no involvement with the child welfare system, it is particularly important to serve those outside that system of supports. For more information, and to find a kinship navigator in your state, territory, or tribe, see Kinship Navigator Programs Around the United States.
Kinship/Grandfamilies, Kinship Families, and Grandfamilies
Throughout this website and our resources, we use the terms “kinship/grandfamilies,” “grandfamilies,” and “kinship families” to refer to all families in which grandparents, other relatives, or close family friends are raising children whose parents are unable to do so. A longer explanation of our use of these terms is available here.
L
Long-Term Care (LTC)
Sometimes referred to as “Long-Term Services and Supports” or “LTSS,” LTC refers to services and supports benefiting people who have difficulty independently performing one or more Activities of Daily Living (e.g., eating, getting dressed/undressed, bathing, etc.) and/or Instrumental Activities of Daily Living (e.g., grocery shopping, housekeeping, money management, etc.). Long-Term Care can be provided in a residence, a community setting, or a residential facility.
Long-Term Care Facility (LTC Facility)
This term refers to facilities such as nursing homes and assisted living facilities that provide long-term care services in a residential setting. These facilities typically do not permit children in kinship/grandfamilies to reside in them.
M
McKinney-Vento Homeless Assistance Act
The McKinney-Vento Homeless Assistance Act (often called the “McKinney-Vento Act” or just “McKinney-Vento”) is a federal law that includes provisions designed to ensure that children and youth who are experiencing homelessness have access to a free and appropriate public education. Children in the care of kin who lack any type of legal relationship with their caregivers and are not in foster care are considered to lack a fixed, regular, and adequate nighttime residence and can therefore qualify for educational enrollment and services as “unaccompanied” children and youth under McKinney-Vento (42 U.S.C. § 11434a(2)). Under McKinney-Vento, each school district in the country must have a local homeless education liaison. For more information, see the resources available through the National Center for Homeless Education, such as “Determining Eligibility for McKinney-Vento Rights and Services” and “Supporting the Education of Unaccompanied Students Experiencing Homelessness,” as well as the PowerPoint presentation on this topic from a May 2022 Network Regional Convening.
Medicaid
Medicaid is a federal-state program led by the U.S. Centers for Medicare & Medicaid Services, and largely administered at the state level. Its main function is to provide health insurance for low-income Americans, but Medicaid can also pay for long-term services and supports such as in-home care, adult day programs/services, and nursing homes. While there are federal standards for all Medicaid programs, states also have a lot of leeway to set their own rules and offer other benefits, which means that eligibility and services can vary significantly among states. The federal government also specifies specific protections for individuals dually eligible for Indian Health Services. Eligibility and scope of care also vary depending on whether the beneficiary is a child, the primary caregiver of a child, an older adult, or an adult with a disability.
Medicare
A program of the U.S. Centers for Medicare & Medicaid Services, Medicare provides primary health insurance to older adults and adults with disabilities. Medicare consists of four parts: Medicare Part A, Part B, Part C, and Part D. Medicare Part A covers in-patient medical care. Medicare Part B covers outpatient medical care. Medicare Part C is another name for Medicare Advantage Plans, and Medicare Part D provides prescription drug coverage. All parts of Medicare (except Part A) are for older adults (age 65 and older) who contributed to the Medicare Trust Fund through their payroll taxes for a total of 40 quarters (or 10 years of full-time work). Older adults (age 65 and older) who did not sufficiently contribute to the Medicare Trust fund may buy in to Medicare Part A. Many adults (even those younger than age 65) with disabilities also qualify for Medicare. Like other health insurances, Medicare has premiums, deductibles, and copayments or coinsurance. When selecting which type of Medicare makes the most sense for them given their health conditions and circumstances, it is important for Medicare beneficiaries to get unbiased guidance, for example through assistance programs offered by Area Agencies on Aging and State Health Insurance Assistance Programs. For more information, see Medicare Basics.
Medicare Advantage
Medicare Advantage, also known as “Medicare Part C,” is one of two ways by which beneficiaries can choose to participate in Medicare (the other is Original Medicare). Medicare Advantage plans frequently provide some limited dental and vision benefits and may cover other benefits (e.g., transportation assistance) that Original Medicare does not cover. Most Medicare Advantage plans also charge premiums that must be paid in addition to Medicare Part B premiums. Medicare Advantage plans include all the coverage offered by Medicare Parts A (inpatient medical care) and B (outpatient medical care). Depending on the individual plan chosen, a Medicare Advantage plan also may include all the coverage in Medicare Part D (prescription drug coverage). Medicare Advantage plans may place limits on which doctors a beneficiary can see and may require beneficiaries to get a referral from their primary care physician before seeing a specialist. Unlike Original Medicare (which is directly run by the U.S. Centers for Medicare & Medicaid Services), Medicare Advantage plans are administered by private insurance companies that contract with the federal government. As such, Medicare Advantage plans could be discontinued by a beneficiary’s private provider; however, provisions exist for beneficiaries whose plans have been discontinued. For more information, see Medicare’s Your Health Plan Options webpage.
Medicare Extra Help
Also called “Medicare Low-Income Subsidy,” “LIS,” or simply “Extra Help,” this federal program assists Medicare beneficiaries who have limited incomes so they can afford their Medicare Part D (prescription drug coverage) premiums, coinsurance, and other costs. For more information, see Medicare’s Help with Drug Costs webpage.
Medicare [Original]
Known as “Original Medicare,” this is one of two ways by which beneficiaries can participate in Medicare (the other is Medicare Advantage). With Original Medicare, which is a fee-for-service model, beneficiaries can choose any medical provider that accepts Medicare and can see specialists without a referral from their primary care physician. In comparison with Medicare Advantage, which may offer dental, vision, or other additional coverage, Original Medicare tends to cover fewer supplemental benefits. It is directly operated by the U.S. Centers for Medicare & Medicaid Services (CMS), whereas Medicare Advantage is operated by private insurance companies with CMS oversight. Original Medicare charges 20 percent coinsurance for many covered procedures and equipment, though this charge often is covered by a beneficiary’s secondary insurance like Medicare Supplemental Insurance. For more information, see Medicare’s Original Medicare webpage.
Medicare Savings Programs
The Medicare Savings Programs are four Medicaid-funded programs that help Medicare beneficiaries with limited incomes (who are over the income limits for Medicaid eligibility) to afford their Medicare Parts A (inpatient care) and B (outpatient care) premiums and, in some cases, deductibles, copays, or coinsurance. Individually, the four programs are known as the Qualified Medicare Beneficiary program (QMB – pronounced “kwimbee”), the Specified Low-Income Medicare Beneficiary program (SLMB – pronounced “slimbee”), the Qualifying Individual program (QI), and the Qualified Disabled and Working Individual program (QDWI). Because these programs are Medicaid-funded and because Medicaid is largely administered by the states, professionals should be aware that program scope and eligibility vary somewhat by state. For more information, see Medicare Savings Programs.
Medicare Supplemental Insurance
Also called “Medigap,” this secondary insurance purchased by some Original Medicare beneficiaries covers Original Medicare’s deductibles, copayments, and coinsurance. Some Medicare Supplemental Insurance plans also cover services and equipment not covered by Original Medicare (e.g., eyeglasses, dental care, etc.). Sold by private insurance companies, there are 10 types of Medicare Supplemental Insurance Plans, titled Plans A, B, C, D, F, G, K, L, M, and N. The scope of these plan types is regulated by law; however, not every plan type is available in every jurisdiction. Not every Medicare beneficiary needs Medicare Supplemental Insurance. Some Medicare beneficiaries carry secondary insurance from their current or former employers. Medicare beneficiaries dually eligible for Medicaid receive secondary insurance benefits from Medicaid. Medicare Advantage beneficiaries are not eligible to purchase Medicare Supplemental Insurance and may have similar coverage under their Medicare Advantage plans. For more information, see Medicare Supplement Insurance.
Medigap
See Medicare Supplemental Insurance above.
N
National Family Caregiver Support Program (NFCSP)
This program, authorized under Title III E of the Older Americans Act, provides federal funding, through states and territories, to Area Agencies on Aging (AAAs) to offer supportive services for family caregivers. Family caregivers eligible to receive supportive services include adult family or friends caring for an older adult (age 60 and older), adult family or friends caring for a person of any age with Alzheimer’s disease and related disorders, grandparents and other relatives (age 55 and older) who are raising children, and older family caregivers (age 55 and older) caring for a relative (age 18 to 59) with disabilities. For more information, see the U.S. Administration for Community Living’s National Family Caregiver Support Program webpage.
National Strategy to Support Family Caregivers
The 2022 National Strategy to Support Family Caregivers was created to support family caregivers of all ages, from youth to older grandparents, and regardless of where they live or what caregiving looks like for them and their loved ones.
The strategy was developed jointly by the advisory councils created by the RAISE Family Caregiving Act and the Supporting Grandparents Raising Grandchildren Act, with extensive input from the public, including family caregivers and the people they support. It will be updated in response to public comments and will evolve with the caregiving landscape.
Native American Caregiver Support Program (NACSP)
This program, authorized under Title VI Part C of the Older Americans Act, provides federal funding to Title VI Native American Aging Programs (Title VI programs) to support family caregivers. Family caregivers eligible to receive supportive services include adult family or friends caring for an older adult or an individual with Alzheimer’s disease and related disorders, and grandparents and other relatives (age 55 and older) who are raising children. Tribes determine the age at which an adult is considered an older adult. For more information, see the U.S. Administration on Aging’s Title VI Resource Manual.
Naturally Occurring Retirement Community (NORC)
This term refers to unplanned (i.e., naturally occurring) communities, neighborhoods, or apartment complexes/buildings that have high concentrations of older adult residents and that can also house residents of other age groups. The term is often used in contrast with long-term care facilities, retirement homes, and active aging communities that house high concentrations of older adults by design and exclude residents of other age groups.
Nutrition Assistance Program
Instead of the Supplemental Nutrition Assistance Program (SNAP), Puerto Rico, American Samoa, and the Commonwealth of the Northern Mariana Islands operate the Nutrition Assistance Program (NAP) for food benefits. Unlike SNAP, NAP operates based on fixed annual Congressional funding (a block grant), meaning that participation is capped. Puerto Rico, American Samoa, and the Commonwealth of the Northern Mariana Islands establish the eligibility and benefit levels for their NAP programs. For more information, see Supplemental Nutrition Assistance Program for Kinship/Grandfamilies.
O
Older Americans Act (OAA)
Originally passed in 1965, the federal Older Americans Act established the Aging Network, headed by the U.S. Administration on Aging. The OAA also authorized federal funding for a variety of supportive services for older Americans, as well as related research and planning. Over the years, the law has been reauthorized and amended several times to include expansions in its scope of services and supports. A 2000 amendment authorized funding specifically to support family caregivers. For more information, see the U.S. Administration for Community Living’s Older Americans Act webpage.
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Pension
A pension is an employer-sponsored retirement savings plan. Unlike many retirement savings plans commonly seen today (e.g., IRA, 401k, etc.), a pension typically provides a retiree with a monthly payment for the retiree’s lifetime.
Power of Attorney and Consent/Authorization Laws
Nearly every state has a general power of attorney law that allows an individual to give someone else the authority to make important decisions on their behalf. Many states and the District of Columbia have power of attorney laws that specifically allow parents to complete and sign a form or document that gives a relative the right and responsibility to care for a child and make major decisions on their behalf. In jurisdictions without a specific law for children, the general power attorney law typically applies. A power of attorney typically lasts for six months to a year. Because of their time-limited nature, they are not always the best option for long-term caregivers. Additionally, many states have educational and/or healthcare consent or authorization laws that caregivers can complete, which is very important for families in which the parents are not available. Parents can generally revoke powers of attorney and consent documents at any time and, regardless of the laws, institutions do not always accept these documents. For more information, see the Power of Attorney and Consent section of the Care & Custody webpage on Grandfamilies.org.
Q
Qualified Disabled and Working Individual (QDWI)
See Medicare Savings Programs above.
Qualified Medicare Beneficiary (QMB)
See Medicare Savings Programs above.
Qualifying Individual program (QI)
See Medicare Savings Programs above.
R
Regions
The U.S Department of Health and Human Services divides the country into 10 regions, each with offices that directly serve state and local organizations. To find regional office contacts for ACL and ACF, among others, visit the Regional Offices webpage.
Relative Caregivers
In most contexts, the term relative caregivers refers to caregivers who are related to the children they are raising, whether by blood, adoption, or marriage. In Native communities and Native contexts, the most widely recognized and appropriate term for all kin caregivers is “relative caregivers,” because the term “relative” applies to everyone in their community and is a meaningful part of community life. As a result, we primarily use the term “relative caregivers” in resources that are focused on Native communities and families. When the term “relative caregiver” appears in our work outside of Native contexts, it indicates that the specific program, service, or policy under discussion is only for families that are led by a relative in the mainstream understanding of that term. A longer explanation of our use of this term is available here.
Representative Payee
See Social Security Representative Payee below.
Respite
Respite “includes any activity that provides the caregiver with a meaningful break,” according to the National Strategy to Support Family Caregivers: Actions for States, Communities, and Others (page 17). Kin caregivers are explicitly included in the National Strategy and respite is a critical support to many kin caregivers. Please see the Network’s toolkit on Starting A Kin Caregiver Respite Program.
S
Section 202
When used to describe housing, this term refers to a subsidized housing program of the U.S. Department of Housing and Urban Development (HUD), called the “Section 202 Supportive Housing for the Elderly Program.” Older residents (age 62 and older) of Section 202 buildings pay a portion of their income as rent, while the rest is subsidized. For the last 15 years, Section 202 has also included an “intergenerational housing” component for relative caregivers age 62 and older who are raising children. For more information, see the U.S. Department of Housing and Urban Development’s Section 202 Supportive Housing for the Elderly Program webpage.
Section 504 of the Rehabilitation Act of 1973
Section 504 of the Rehabilitation Act of 1973 prohibits discrimination on the basis of disability in programs and activities that receive federal financial assistance as well as in programs and activities conducted by any federal agency. A new rule, finalized in May 2024, specifically includes child welfare, prohibiting discrimination against children, parents, caregivers, foster parents, and prospective parents in the child welfare system.
Section 811
When used to describe housing, this term refers to a subsidized housing program of the U.S. Department of Housing and Urban Development (HUD), called “Section 811 Supportive Housing for People with Disabilities.” People with disabilities who live in Section 811 buildings pay a portion of their income as rent, while the rest is subsidized. For more information, see the U.S. Department of Housing and Urban Development’s Section 811 Supportive Housing for Persons with Disabilities webpage.
Senior Centers
Senior centers provide a variety of social, educational, and health promotion activities for active older adults. While some are funded through Area Agencies on Aging under the Older Americans Act, most rely on other local funding and donations. For more information, see the National Council on Aging.
Senior Community Service Employment Program (SCSEP)
A program under Title V of the Older Americans Act, SCSEP (pronounced “see-sep”) provides employment training for low-income older adults (age 55 and older). Unlike most Older Americans Act programs, SCSEP is administered by the U.S. Department of Labor (DOL). For more information, see the U.S. Department of Labor.
Social Security
Broadly, Social Security refers to income received from the federal government by people who are retired or who are unable to work due to disability. Social Security also covers minor children who have survived the death of a parent. In some cases, grandchildren who are being raised by their grandparents can receive benefits when a grandparent retires, becomes disabled, or dies. More specifically, Social Security consists of multiple programs, including Social Security Retirement Insurance, Social Security Disability Insurance, Supplemental Security Income, and Social Security Survivor Insurance. Frequently, the term is used to describe only Social Security Retirement Insurance or Social Security Disability Insurance. For more information, see the U.S. Social Security Administration.
Social Security Disability Insurance (SSDI)
SSDI is one of two programs of the U.S. Social Security Administration that pays income to people who are unable to be gainfully employed due to disability; the other is the Supplemental Security Income program. SSDI pays income to people who are unable to be gainfully employed due to disability, who paid Social Security payroll taxes, and who earned sufficient credits. Credit requirements vary by the age of the applicant. SSDI monthly payments vary depending on how much an individual paid into the Social Security system via payroll taxes. For more information, search the U.S. Social Security Administration’s Publications for 05-10029.
Social Security Representative Payee
This term refers to a person or organization that has received permission from the U.S. Social Security Administration to manage the Social Security payments for a person receiving said payments. For more information, search the U.S. Social Security Administration’s Publications for 05-10076 and 05-10097.
Social Security Retirement Insurance
Also known as “Social Security Retirement Benefits” or sometimes just “Social Security,” this Social Security program pays retirement income to people who paid Social Security payroll taxes, who earned sufficient credits to be eligible for the program, and who have reached retirement age. Monthly payments vary depending on how much an individual paid into the Social Security system via payroll taxes and the age at which they first claimed the benefit, among other factors. Social Security Retirement Insurance was never intended to be the sole source of a person’s retirement income and generally does not cover all retirement costs. For more information, search the U.S. Social Security Administration’s Publications for 05-10035.
Social Security Survivors Insurance
Also known as “Social Security Survivors Benefits,” this program pays income to certain family members (including spouses, divorced spouses, children, parents, and sometimes grandchildren) of a deceased person who paid Social Security payroll taxes and who earned sufficient credits for their age at the time of their death. Eligibility rules differ depending on the relationship of the surviving family member to the deceased worker and, in some cases, depending on the disability status of the surviving family member. Monthly payments vary depending on how much the deceased worker paid into the Social Security system. For more information, search the U.S. Social Security Administration’s Publications for 05-10084.
Special Supplemental Nutrition Program for Women, Infants, and Children (WIC)
WIC is a federal nutrition program that seeks to protect and improve the health of nutritionally at-risk infants, children up to five years old, and pregnant and postpartum individuals from households with low incomes. Kin/grandfamily caregivers with or without legal custody can apply for WIC for infants and children up to age five in their care. If approved, their local WIC clinic will give them an electronic benefits transfer (EBT) card to purchase a food package tailored to the infant or child’s needs. WIC approved foods include yogurt, eggs, milk, iron-fortified cereal, peanut butter, beans, whole-grain bread, tortillas, and rice, as well as infant formula, specialty formula, baby food, and infant cereal. For more information, see Kinship/Grandfamilies and the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) and the U.S. Department of Agriculture’s webpage on WIC.
Specified Low-Income Medicare Beneficiary program (SLMB)
See Medicare Savings Programs above.
State Health Insurance Assistance Programs (SHIPs)
Administered under the U.S. Administration for Community Living (ACL), SHIPs are a nationwide network of trained volunteers providing no-cost one-on-one guidance to Medicare-eligible individuals, caregivers, and their families on their options under Medicare. In many cases, the Area Agency on Aging functions as the SHIP in their service area. The nationwide SHIPs also help limited-income Medicare-eligible individuals apply for assistance under Medicare Extra Care, Medicare Savings Programs, or Medicaid. For more information, see the U.S. Administration for Community Living’s State Health Insurance Assistance Program webpage. Find a SHIP via the SHIP National Technical Assistance Center. See also Medicaid, Medicare, Medicare Extra Help, and Medicare Savings Programs, above.
State Units on Aging (SUAs)
Part of the Aging Network, these designated state-level agencies develop and administer multi-year state plans supporting the rights and needs of older adults in their states. Much of the federal funding authorized under the Older Americans Act flows through SUAs to Area Agencies on Aging for local program development, and the SUA has an important monitoring role over all Older Americans Act funds. Note: “State Unit on Aging” is a generic term and may not appear in the name of any specific SUA. To find the SUA in any state, see the U.S. Administration for Community Living’s Eldercare Locator.
Supplemental Nutrition Assistance Program (SNAP)
Previously known as food stamps, SNAP is the nation’s largest nutrition program, providing monthly benefits to tens of millions of people. SNAP’s benefits are loaded onto an Electronic Benefits Transfer (EBT) card – which works like a debit card – so that participating households can purchase food at participating supermarkets, farmers’ markets, and other food stores. SNAP can be used to buy most types of food. SNAP can also be used to buy seeds for growing food. SNAP benefits are targeted to households with low incomes, and the amount of the benefit is largely based on how low the household’s income is and how many people are in the household. Caregivers do not need legal custody or guardianship of the child they are raising the apply for SNAP. SNAP (which may be called something else, depending on the jurisdiction) is administered by the United States Department of Agriculture (USDA) and by the SNAP agency in the state or territory. SNAP operates in all fifty states, the District of Columbia, and two territories: Guam and the U.S. Virgin Islands. Currently, tribal governments do not have the right to administer SNAP. State agencies are required to consult with Indian Tribal Organizations about the implementation and operation of SNAP on reservations. People who live on tribal lands should apply through the SNAP agency in the relevant state. For more information, see Supplemental Nutrition Assistance Program for Kinship/Grandfamilies and the U.S. Department of Agriculture’s webpage on SNAP.
Supplemental Security Income (SSI)
SSI is one of two programs of the U.S. Social Security Administration that pays income to people who are unable to be gainfully employed; the other is the Social Security Disability Insurance (SSDI) program. SSI pays income to older adults (age 65 and older) who have low income and limited assets. It also pays income to adults (of any age) and children who have low income and limited assets and who meet the Social Security Administration’s definitions of being blind or having a disability. SSI (which generally pays less than SSDI) may be an option for those who have not earned sufficient credits through Social Security payroll taxes to qualify for SSDI. For more information, search the U.S. Social Security Administration’s Publications for 05-11000.
System
A system is the combination of government agencies and nonprofit organizations that work on a specific human service area. For example, the housing system for a particular jurisdiction includes all of the government agencies (federal, state, tribal, territorial, and local) that affect housing in that jurisdiction and all of the nonprofit housing services and supports that operate in that jurisdiction, including national, state, tribal, territorial, and local organizations. The Network focuses on eight systems: aging, child welfare, disability, education, housing, Medicaid/Medicare, nutrition, and Temporary Assistance for Needy Families (TANF).
T
Temporary Assistance for Needy Families (TANF)
Each state, U.S. territory, and federally recognized American Indian tribe and Alaska Native organization receives a federal TANF block grant to provide cash grants and operate programs designed to help low-income families with children achieve economic self-sufficiency. Jurisdictions vary widely in what they call their TANF program, and in how that program looks, including the grant amounts they provide to families and children. For more information, see About TANF, a page of the federal Office of Family Assistance website. Additionally, Generations United has a policy brief entitled Improving Grandfamilies’ Access to Temporary Assistance for Needy Families.
Temporary Assistance for Needy Families (TANF) Child-Only
TANF Child-Only is a cash benefit that families can receive when no adult is included in the benefit calculation. This exclusion can only happen in certain circumstances, such as when a child is living with relatives (or, in some states, specified nonrelatives) instead of with their parents. Unlike TANF family grants, TANF child-only does not have work requirements or time limits. For more information, see TANF Child-Only Cases, a federal brief reviewing evidence related to TANF child-only, and TANF Child-Only Cases: Characteristics, Needs, Services, and Service Delivery Challenges, a report put out by the federal Office of Family Assistance. Additionally, Generations United has a policy brief entitled Improving Grandfamilies’ Access to Temporary Assistance for Needy Families and a fact sheet called Grand Resources: TANF.
Title III
Within aging services, this term usually refers to Title III of the Older Americans Act. This title authorizes federal funding for many of the aging services and supports under the Act, including case management, in-home assistance, Information and Referral/Assistance, transportation, nutrition, health promotion, and more. Title III is divided into five subsections: Title III-A specifies general provisions of the title; Title III-B details the range of supportive services that Area Agencies on Aging may offer; Title III-C covers nutritional services; Title III-D provides guidance for evidence-based disease prevention and health promotion services; and Title III-E covers the National Family Caregiver Support Program. For more information, see the U.S. Administration for Community Living’s report, Older Americans Act (OAA) Title III Summary Highlight.
Title IV-B
Title IV-B of the Social Security Act consists of two parts. Formula grants from Title IV-B Subpart I, also known as the Stephanie Tubbs Jones Child Welfare Services (CWS) program, provide flexible support for three areas: preventive intervention to keep children with their families, alternative placements that keep children out of foster care, and reunification efforts. Title IV-B Subpart II, also known as the MaryLee Allen Promoting Safe and Stable Families (PSSF) program, focuses on family preservation and support services. For more information, see Child Welfare Federal Funding Streams: Title IV-B.
Title IV-E
Title IV-E of the Social Security Act provides federal foster care funding for states and participating territories and Tribes. Title IV-E funds foster care maintenance payments for eligible children in foster care, administrative expenses incurred in running a foster care program, services and supports for eligible children determined to be at imminent risk of removal who would be placed in foster care absent effective provision of preventive services, and certain kinship navigator programs that have been determined to be evidence-based by the Title IV-E Prevention Services Clearinghouse. For more information, see Title IV-E Foster Care.
Title IV-E Agency
A Title IV-E agency is a state, territorial, or Tribal agency that receives Title IV-E funding. Each state and qualifying territory receives Title IV-E funding, and they submit a “plan” to the Administration on Children and Families that governs their use of the funds. Tribes have to apply to implement their own title IV-E funds.
Title IV-E Prevention Services Clearinghouse
The 2018 Family First Prevention Services Act called for the creation of the Title IV-E Prevention Services Clearinghouse (Clearinghouse). The Clearinghouse was established to review research on programs and services intended to provide enhanced support to children and families and prevent foster care placements. The Clearinghouse reviews evidence on mental health, substance abuse prevention and treatment, and in-home parent skill-based programs and services, as well as kinship navigator programs. Using its criteria, the Clearinghouse designates programs and services as well-supported, supported, promising, or does not currently meet criteria. Inclusion in the Clearinghouse is a necessary step for federal Title IV-E funding to jurisdictions implementing these services and supports. For more information, see the Who We Are page of the Clearinghouse website.
Title V
See Senior Community Service Employment Program above.
Title VI/Title VI Program
Added to the Older Americans Act (OAA) in 1978, Title VI specifically covers older Native Americans. It authorizes federal funding for nutrition, health promotion, and supportive services that are similar to those under Title III of the OAA. Title VI also authorizes the funding of family caregiver services under the Native American Caregiver Support Program, which is like the National Family Caregiver Support Program (Title III-E in the Older Americans Act). Title VI is divided into three subparts: Title VI Part A (also called the “Indian Program”) establishes grant programs for older Native Americans belonging to federally recognized tribes in the continental U.S. and in Alaska; Title VI Part B (also called the “Native Hawaiian Program”) authorizes federal funding for organizations that support older Native Hawaiians; and Title VI Part C is the Native American Caregiver Support Program. Kin/grandfamily caregivers are eligible for family caregiver services under Title VI Part C of the Older Americans Act. Some Title VI programs offer specific services for kin/grandfamily caregivers. For more information, see the U.S. Administration for Community Living’s Services for Native Americans (OAA Title VI) webpage.
The term “Title VI program” or “Title VI grantee” is used to describe the federally recognized Tribes that receive Title VI funding. A list of Title VI programs can be found on the website of the U.S. Administration for Community Living’s Office for American Indian, Alaskan Native, and Native Hawaiian Programs. For more information, see the U.S. Administration for Community Living’s Services for Native Americans (OAA Title VI) webpage.
V
Villages
Independently operated nonprofit “Villages” are established at the local level and connect members to a wide array of support services and social connections that enable older adults to enjoy an independent and healthy quality of life when they choose to age in their homes and communities. Most Villages are membership-based, charging fees and only providing services to members. Supportive services, membership eligibility, and fees vary from Village to Village. Each Village operates independently, but they are loosely affiliated in an association called the Village to Village Network.
W
WIC
See Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) above
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504 Plan
504 plans are intended to give children with disabilities the support they need to promote the best outcomes for them in school, often by providing accommodations like extended time for tests, a seat in front of the classroom, occupational therapy, or social-emotional supports. Because individualized education programs (IEPs) have more eligibility requirements, a student who doesn’t qualify for an IEP might still be able to get a 504 plan. Understood, a nonprofit organization, has a page with more information about 504 plans, as well as a page explaining the differences between 504 plans and IEPs.