The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
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New York New York 10017

Glossary of Terms


A political process by an individual or a group which aims to influence public policy and resource allocation decisions.

Alternate Assessments on Alternate Academic Achievement Standards (AA-AAS)

Assessments that states are permitted to use under the No Child Left Behind (NCLB) Act for students with the most significant cognitive disabilities. Most students with Down syndrome take this type of assessment. The AA-AAS is required to be aligned to the same State academic content standards as are used for all other students. However, the level of achievement that is expected for these students on the content standards is different—that is why the assessment is described as being based on alternate academic achievement standards.

Appropriations Bill

A legislative bill approved by Congress which authorizes the federal government to spend money and allocates a budget for specific spending.

Early Intervention Services

Individuals with Disabilities Education Act (IDEA) requires states to provide early intervention services to children under three years of age who are experiencing developmental delays or have a diagnosed physical or mental condition that has a high probability of resulting in developmental delays. Some states have elected to extend these services until age five. The services are designed in the Individualized Family Service Plan (IFSP) to meet the child's needs in the areas of physical, cognitive, communication social/emotional or adaptive development. These services are provided at no cost, except where Federal or State law provides for a system of payments by families including a schedule of sliding fees, and are supposed to be delivered in the child's natural environment (e.g. home or childcare setting). Examples of services include, but are not limited to, family training, counseling, speech and language therapy, occupational therapy, assistive technology devices and transportation services.

Elementary and Secondary Education Act (ESEA)

The Elementary and Secondary Education Act (ESEA), passed in 1965 as part of President Lyndon Johnson's "War on Poverty," called for the creation of equal education opportunities for disadvantaged children. It established school system accountability for students and provided federal funding for elementary and secondary education. This extensive piece of legislation also provides funds for professional development, instructional materials, educational programs and the support and encouragement of parental involvement in the education of their child. ESEA was reauthorized in 2001 as the No Child Left Behind Act (NCLB) and again in 2015 as the Every Student Succeeds Act (ESSA).

ESEA Flexibility Requests

In 2011, the US Department of Education started permitted states to apply for a waiver for some of the key provisions in NCLB. The application is called an ESEA Flexibility Request and contains details about how schools will be held accountable for the college and career readiness of its students and how teachers and principals will evaluated. Civil rights and disability advocates have concerns about the impact these waivers will have on school accountability for the academic performance of the disadvantaged students who are the focus of NCLB.

Free Appropriate Public Education (FAPE)

The Individuals with Education Act (IDEA) defines FAPE as "free appropriate public education". This means the child receives special education and related services provided at public expense, under public supervision and direction, and without charge, that the special education delivered include an appropriate preschool, elementary school or secondary school education that meets the standards established by a State education agency and is delivered in conformity with the requirements of the child's Individualized Education Program (IEP). IDEA requires that a student with a disability be provided FAPE in the least restrictive environment (LRE).

Higher Education Opportunity Act (HEOA)

The Higher Education Opportunity Act (Public Law 110-315) was enacted into law in August 2008. It reauthorizes the Higher Education Act of 1965, as amended (HEA). The law authorizes federal funding for a number of higher education programs, student assistance and federal financial aid for students attending colleges and universities.

Individuals with Disabilities Education Act (IDEA)

IDEA, the critically important civil rights law guaranteeing education to all children with disabilities, was passed in 1975. Prior to its passage, one million children with disabilities were not permitted to attend school in the US and several million children with disabilities were receiving inadequate education. Hallmarks of the law include:

  • The mandate for a free and appropriate education for students with disabilities (FAPE) through the provision of special education and related services, due process guarantees and other important safeguards for students and families
  • The requirement that education be delivered in the least restrictive environment (LRE)
  • A clearly defined role for parents in the design of the student's educational program through participation in the development of an annual individualized education program (IEP). 

This law is periodically reviewed and revised by Congress through a reauthorization process.

Individualized Education Program (IEP)

The IEP is a written, legal document required by the Individuals with Disabilities Education Act (IDEA) that is developed and reviewed on an annual basis by a team, including teachers, related services personnel and parents of a student with a disability who is eligible to receive special education services. The IEP identifies a disability classification for the student, which is the basis for his or her eligibility to receive services and defines yearly goals and objectives, accommodations, modifications, services and supports necessary to meet those annual goals and objectives. The IEP also determines the percentage of time that the student will be educated with non-disabled peers.

Individualized Family Service Plan (IFSP)

The IFSP is a written, legal document required by the Individuals with Disabilities Education Act (IDEA) that is developed and reviewed annually by a multidisciplinary team, including the parents of a child who receives early intervention services. The IFSP identifies the measurable results or outcomes to be achieved, the services necessary to meet the unique needs of the child and the family, the natural environments in which services will be provided and the identification of a service coordinator.


Inclusive education is an approach to the delivery of education based on ensuring that students with disabilities are not educated separately from their non-disabled peers. A student with disability in inclusive education receives special education and related services as defined in the student's IEP in the student's neighborhood school and in general education classes comprised of age appropriate peers and where instruction provides access to the core academic curriculum studied by non-disabled peers. Many studies show the benefits of inclusion for students with disabilities and their non-disabled peers.

Independent Living

One of the purposes of the Individuals with Disabilities Education Act (IDEA) is to prepare students with disabilities for independent living, which means living in the community with the opportunity to be as self-sufficient as possible. The principle of self-determination is an essential component of independent living. People with disabilities are the best experts on their own needs, having crucial and valuable perspective to contribute and deserving of equal opportunity to decide how to live, work and take part in their communities, particularly in reference to services that powerfully affect their day-to-day lives and access to independence.

Least Restrictive Environment (LRE)

LRE is a core component of the Individuals with Disabilities Education Act (IDEA), which provides that a student with a disability must receive a free appropriate public education (FAPE) with non-disabled peers to the maximum extent appropriate. The LRE provisions of IDEA require that the general education classroom be considered by the IEP team before consideration of more restrictive placements, and that special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in general education classes with the use of supplementary aids and services cannot be achieved satisfactorily. This legislative language creates a strong presumption that the appropriate placement for students with disabilities is in the general education classroom and that schools must provide the necessary supports for this placement to be successful.


A form of advocacy where a direct approach is made to legislators on an issue which plays a significant role in modern politics.

No Child Left Behind Act (NCLB)

NCLB was passed by Congress with bipartisan support as an effort to improve the Elementary and Secondary Education Act (ESEA) in 2001 and signed into law by President George W. Bush on January 8, 2002. The federal legislation focused on advancing education outcomes for disadvantaged students. NCLB required states to assess all students on the state academic content standards in grades 3-8 and one year during high school, as a condition for receiving federal funding. In addition to testing, the law required the collection and reporting of data for students by race and poverty and other subgroups such as students with limited English proficiency and disabilities. Schools that fail to meet annual goals for math and English/Language Arts for every subgroup (referred to as adequate yearly progress- AYP) are subject to a continuum of consequences from technical assistance to corrective action and even restructuring. Students in schools so identified are to be given the opportunity to attend a better public school and/or receive tutoring. In 2012, most states submitted ESEA Flexibility Requests and were granted waivers from many NCLB requirements, including AYP.

Related Services

The Individuals with Disabilities Education Act (IDEA) provides for these services, which are designed to help children with disabilities benefit from their special education by providing extra help and support in needed areas. Related services can include, but are not limited to, any of the following:

  • speech-language pathology and audiology services
  • interpreting services
  • psychological services
  • physical and occupational therapy
  • recreation, including therapeutic recreation
  • early identification and assessment of disabilities in children counseling services, including rehabilitation counseling orientation and mobility services
  • medical services for diagnostic or evaluation purposes
  • school health services and school nurse services
  • social work services in schools parent counseling and training

Postsecondary Education

Postsecondary (higher) education is education that follows the completion of secondary education (such as high school). It includes undergraduate and postgraduate education, vocational education and training. Postsecondary education usually takes place at universities, colleges, seminaries, institutes of technology and college-level vocational and trade schools or career colleges that award academic degrees or professional certifications.


This term refers to the process by which Congress periodically reviews and prescribes changes, additions, and deletions to existing statutes. The intent of this process is to adjust current programs to meet the nation’s changing needs.

Special Education

A student with a disability under the Individuals with Disabilities Education Act (IDEA) must receive specially designed instruction to address the unique needs of the student that result from his/her disability and to ensure access to the general curriculum, so that the student can meet the educational standards that apply to all children. This includes adapting, as appropriate to the needs of the student, the content, methodology or delivery of instruction.

Systems Change

Systems change is the development of new policies, programs, use of resources and service delivery by a community or governmental unit (school district, local, state or federal government, etc.). Effective systems change is built on broad stakeholder involvement in such improvement and typically involves a variety of agencies, organizations and advocates.


Transition by students with disabilities refers to the movement from one program or setting to another. Such transitions include services for infants and toddlers to preschool, then to elementary school, middle school and high school. Planning for the transition from school to postsecondary education, employment and independent living should start early in the child’s life. The requirement for the age transition services must start varies by state, but must start no later than age 16.

Universal Design for Learning (UDL)

A scientifically valid framework for guiding educational practice that accommodate individual learning differences by providing flexibility in the ways information is presented, in the ways students respond or demonstrate knowledge and skills, and in the ways students are engaged. UDL reduces barriers in instruction, provides appropriate accommodations, supports and challenges, and maintains high expectations for all students, including students with disabilities and students with limited English proficiency.

US Representative

Also referred to as a Congressman or Congresswoman, each representative is elected to a two-year term serving the people of a specific congressional district. Among other duties, US Representatives introduce bills and resolutions, offer amendments and serve on committees. The number of US Representatives with full voting rights is 435, a number set by Public Law 62-5 on August 8, 1911, and in effect since 1913. The number of US Representatives per state is proportionate to population.

US Senator

The Constitution requires that a US Senator be at least 30 years old, a citizen of the United States for at least nine years and an inhabitant of the state from which he or she is elected. A person elected or appointed to the Senate and duly sworn in is a Senator and has a six-year term.

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