20 U.S.C. § 1491b — Definitions

For the purposes of this subchapter, only the following definitions shall apply:

(1) Child with a disability

The term “child with a disability” means an individual who from birth through 21 years of age meets the definition of disability under paragraph (4).

(2) Council

The term “Council” means an existing Council, or a new Council, which is considered as a State Policy Council for Families of Children with Disabilities under section 1491f of this title.

(3) Culturally competent

The term “culturally competent” means services, supports, or other assistance that is conducted or provided in a manner that—

(A) is responsive to the beliefs, interpersonal styles, attitudes, language, and behaviors of those individuals receiving services; and

(B) has the greatest likelihood of ensuring maximum participation of such individuals.

(4) Disability

The term “disability” means—

(A) in the case of an individual 6 years of age or older, a significant physical or mental impairment as defined pursuant to State policy to the extent that such policy is established without regard to type of disability; and

(B) in the case of infants and young children, birth to age 5, inclusive, a substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in a disability if services are not provided.

(5) Existing Council

The term “existing Council” means an entity or a committee of an entity that—

(A) is established by a State prior to the date on which the State submits an application for funding under this subchapter;

(B) has authority to advise the State with respect to family support for families of children with disabilities; and

(6) Family

The term “family” means a group of interdependent persons residing in the same household that consists of a child with a disability and one or more of the following:

(A) A mother, father, brother, sister or any combination.

(B) Extended blood relatives, such as a grandparent, aunt, or uncle.

(D) One or more persons to whom legal custody of a child with a disability has been given by a court.

(E) A person providing short-term foster care that includes a family reunification plan with the biological family.

(F) A person providing long-term foster care for a child with a disability.

The term does not include employees who, acting in their paid employment capacity, provide services to children with disabilities in out-of-home settings such as hospitals, nursing homes, personal care homes, board and care homes, group homes, or other facilities.

(7) Family-centered and family-directed

The term “family-centered and family- directed” means, with respect to a service or program, that the service or program—

(A) facilitates the full participation, choice, and control by families of children with disabilities in—

(i) decisions relating to the supports that will meet the priorities of the family; and

(ii) the planning, development, implementation, and evaluation of the statewide system of family support for families of children with disabilities;

(B) responds to the needs of the entire family of a child with a disability in a timely and appropriate manner; and

(8) Family satisfaction

The term “family satisfaction” means the extent to which a service or support meets a need, solves a problem, or adds value for a family, as determined by the individual family.

(9) Family support for families of children with disabilities

The term “family support for families of children with disabilities”—

(A) means supports, resources, services, and other assistance provided to families of children with disabilities that are designed to—

(i) support families in the efforts of such families to raise their children with disabilities in the family home;

(ii) strengthen the role of the family as primary caregiver;

(iii) prevent inappropriate and unwanted out-of-the-home placement and maintain family unity; and

(iv) reunite families with children with disabilities who have been placed out of the home, whenever possible; and

(B) includes—

(i) service coordination that includes individualized planning and brokering for services with families in control of decisionmaking;

(ii) goods and services, which may include specialized diagnosis and evaluation, adaptive equipment, respite care (in and out of the home), personal assistance services, homemaker or chore services, behavioral supports, assistive technology services and devices, permanency or future planning, home and vehicle modifications and repairs, equipment and consumable supplies, transportation, specialized nutrition and clothing, counseling services and mental health services for family members, family education or training services, communication services, crisis intervention, day care and child care for a child with a disability, supports and services for integrated and inclusive community activities, parent or family member support groups, peer support, sitter service or companion service, and education aids; and

(iii) financial assistance, which may include discretionary cash subsidies, allowances, voucher or reimbursement systems, low-interest loans, or lines of credit.

(10) Integration and inclusion

The term “integration and inclusion” with respect to children with disabilities and their families means—

(A) the use of the same community resources that are used by and available to other individuals and families;

(B) the full and active participation in the same community activities and utilization of the same community resources as individuals without disabilities, living, learning, working, and enjoying life in regular contact with individuals without disabilities; and

(11) Lead entity

The term “lead entity” means an office or entity described in section 1491e of this title.

(12) New Council

The term “new Council” means a council that is established by a State, and considered as the State Policy Council for Families of Children with Disabilities, under section 1491f(a) of this title.

(13) Secretary

The term “Secretary” means the Secretary of Health and Human Services.

(14) Service coordination

The term “service coordination”—

(A) means those family-centered and family-directed activities that assist and enable families to receive rights and procedural safeguards and to gain access to social, medical, legal, educational, and other supports and services; and

(B) includes—

(i) follow-along services that assure, through a continuing relationship between a family of a child with a disability and an individual or entity, that the changing needs of the child and family are recognized and appropriately met;

(ii) the coordination and monitoring of services provided to children with disabilities and their families;

(iii) the provision of information to children with disabilities and their families about the availability of services and assistance to such children and their families in obtaining appropriate services; and

(iv) the facilitation and organization of existing social networks, and natural sources of support, and community resources and services.

(15) Statewide system of family support

The term “statewide system of family support for families of children with disabilities” means a family-centered and family-directed, culturally competent, community-centered, comprehensive, statewide system of family support for families of children with disabilities developed and implemented by a State under this subchapter that—

(A) addresses the needs of all families of children with disabilities, including unserved and underserved populations; and

(B) addresses such needs without regard to the age, type of disability, race, ethnicity, or gender of such children or the particular major life activity for which such children need the assistance.

(16) Systems change activities

The term “systems change activities” means efforts that result in laws, regulations, policies, practices, or organizational structures—

(A) that are family-centered and family-directed;

(B) that facilitate and increase access to, provision of, and funding for, family support services for families of children with disabilities; and

(17) Unserved and underserved populations

The term “unserved and underserved populations” includes populations such as individuals from racial and ethnic minority backgrounds, economically disadvantaged individuals, individuals with limited-English proficiency, individuals from underserved geographic areas (rural or urban), and specific groups of individuals within the population of individuals with disabilities, including individuals with disabilities attributable to physical impairment, mental impairment, or a combination of physical and mental impairments.