The leading human rights organization for all individuals with Down syndrome.

National Down Syndrome Society
8 E 41st Street, 8th Floor
New York New York 10017
[email protected] 

Glossary of Terms


A political process by an individual or a group which aims to influence public policy and resource allocation decisions. Although advocacy often takes place on Capitol Hill and in state legislatures, it can also be done every day throughout daily activities such as interacting with friends, family and coworkers. Social media has become a powerful advocacy tool.


A bill that has passed both chambers, the House and the Senate, and has been signed by the President to become law. Often, a bill may have the word "Act" in its title when it is introduced and this does not always indicate that it has been passed.  


A change to a bill or motion, sometimes replacing the entire bill (called a "substitution"). An amendment is debated and voted on in the same manner as a bill. 


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


Legislation that formally establishes a program or activity and sets a funding limit for that program or activity.


A proposed law that is introduced in the legislature by a Member of Congress. A bill is recognized as "HR" in the US House of Representatives and "S" in the US Senate. 


A place where the legislative body meets to conduct business. In the US Congress, we have two chambers, one for the House and one for the Senate.


A group of legislators in the House or Senate that prepares legislation for action for the officiating chamber. Committees often schedule public hearings to discuss legislative issues. Most action takes place at the subcommittee level.


Legislation adopted by both the House and Senate to express the position of Congress. As such a resolution does not have the signature of the President and does not have the force of law.


The official transcript of House and Senate proceedings.


The House and Senate appoint conferees to a conference committee to resolve differences between House and Senate passed versions of the same legislation. The Senate Majority Leader and the House Majority Leader appoint conferees.


A person who lives and votes in a particular area or district.


Legislation passed by both the House and the Senate permitting specific Executive Branch agencies to continue operating even though funds have yet to be appropriated for the following fiscal year.


When a member of the House or Senate supports a pending bill, but is not the primary sponsor, they sign their name onto the bill as a cosponsor to illustrate their support.


The geographic area from which a US House member or state legislator is elected. State legislators also have districts.


Efforts to educate voters (such as legislative scorecards), or to register or encourage them to vote. These activities cannot include efforts specifically designed to influence the outcome of an election.


An action by the President or a Governor that has the legal authority of a law, often dealing with regulations or the workings of agencies.


Delaying tactic, often a long speech, associated with the Senate and used by the Minority in an effort to prevent the passage of a bill or amendment. Usually threatened but not executed. The House cannot filibuster as all debate is governed by strict rules crafted by the Rules Committee setting the parameters for discussion and approved by the entire body for each separate piece of legislation. The Senate does not employ a rulemaking process.


Stating a position on a specific legislative proposal to the public, then asking the public to urge their legislator to support that stated position.


A meeting in which evidence to support particular points of view can be brought forth to the sponsoring committee.


The lower body of the US Congress, and most state legislatures. House members are elected to represent a geographic district. The US House (with 435 voting members and five nonvoting delegates) is much larger than the Senate (with 100 voting members), as is the case in most states.


Members of both chambers are appointed to consider matters of common interest. Such committees can speed up the legislative process by consolidating the time for hearings.


Efforts to change policy through the legislative branch. May include formal lobbying in support or opposition to a bill, the crafting of new legislative language, writing amendments to existing bills or encouraging others to contact their legislators.


  • Chief of Staff: The Chief of Staff reports directly to the member of Congress, and usually is responsible for evaluating the political outcome of various legislative proposals and constituent requests. S/he is also usually in charge of overall office operations, including the assignment of work and the supervision of key staff. The President has a Chief of Staff and some state legislators.
  • Legislative Director: The Legislative Director is usually the staff person who monitors the legislative schedule and makes recommendations regarding the pros and cons of particular issues. In most congressional offices there are several Legislative Assistants whose responsibilities are assigned based on particular expertise in specific areas. For example, depending on the responsibilities and interests of the member, an office may include a different Legislative Assistant for health issues, senior issues, appropriations, etc.
  • Legislative Correspondent: Legislative Correspondents are junior staffers, typically not directly responsible for specific issue areas, who support Legislative Assistants/Aides and have responsibility for constituent communications.
  • Scheduler or Appointment/Personal Secretary: The Scheduler is usually responsible for allocating time for a Member of Congress among the many demands that arise from congressional responsibilities, staff requirements and constituent requests. S/he may also be responsible for making necessary travel arrangements, arranging speaking dates, coordinating visits to the district, etc.


A person who writes and passes laws, especially someone who is a member of a legislature. Legislators are usually elected by constituents.  Representatives and Senators are sometimes referred to as legislators.


Direct communication with elected officials or their staff expressing an opinion on a particular issue or piece of legislation.  


The process of amending a legislative proposal. Held by the committee of jurisdiction, committee members can offer amendments, which if successful, changes the legislative language of a particular bill. If the bill is changed drastically the committee might reintroduce the legislation under a new bill.


The leader of the majority party in the Senate, elected by his/her peers. In the House, the Majority Leader is the second in command in the House after the Speaker of the House and is also elected to that post by his/her peers.


The party numbering the most members in legislative body.


Individuals serving in the US House of Representatives or US Senate.


Leader of the minority party in the House and Senate.


A party numbering less than a majority of members in a legislative body.


A proposal that the Senate or House take a certain action.


After a bill passes both the House and the Senate and is signed by the US President, it becomes a public law.


This term refers to the process by which US 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.


Adjournment by the House or Senate for at least three days, with a set time for reconvening.


An amendment to an appropriations bill, which may not actually deal with the allocation of government funds.


A formal vote on a bill or amendment taken by each legislator announcing "yea", "no" or "present" as their name is read by the clerk. 


The upper body of the US Congress, and most state legislatures. Each state has two US Senators, elected at-large, to serve six-year terms, with one-third of the seats up for re-election every two years. In state legislatures, Senators usually represent larger geographic areas than House members.


A legislative body adjourns sine die when it adjourns without appointing a day on which to appear or assemble again. Often the last day of a legislative session and the deadline for passing most bills introduced in the session.


Elected by the majority party, the Speaker presides over the House of Representatives during the two-year legislative session.


There are many issues, policies and programs that are at the discretion of individual states. In this case, the state legislature, composed of a Senate and a House, debate and decide whether to grant funding and to recreate and amend policies that solely pertain to the issues of the individual state.


A part of a committee that deals with a specific issue within the committee's jurisdiction (such as the Veterans Benefits subcommittee of the Veterans' Affairs committee). Most legislation is first developed and voted on at this level, as a full committee will usually not consider legislation until it has passed its subcommittee.


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.


Also referred to as a Congressman or Congresswoman, each US 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 the state's population.


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.


 A Senator or Representative who serves as an internal lobbyist for the Republican or Democratic party to persuade legislators to support their party position, and who counts votes for the leadership in advance of floor action.

Related Terms


It is important to never label people based on their disability. Instead, they are always people first, and when addressing them in reference to their disability, they should be addressed as “people with Down syndrome”. For example, it is demeaning to refer to a child with Down syndrome as a "Down syndrome child" or a "Down's". The individual may have Down syndrome, but that does not define who they are: they are a sister, a brother, a daughter, a son, a family member, a friend, a student, an athlete, and most importantly they are themselves.

More information can be found here


 The idea that individuals determine their own goals, aspirations and ultimately take charge of their future independently. For all individuals, self-determination is an important concept in the pursuit of living a goal-oriented life. But, for individuals with Down syndrome, the concept is especially important because it often gets unintentionally lost throughout the individual’s early education and extracurricular activities as the individual is told what to do and when to do it.


A step in developing self-determination skills is learning how to advocate for one’s self. Once an individual understands his or her strengths and weaknesses, he or she can advocate for accommodations, the capitalization of his or her strengths and the rights that he or she has.


Individuals that advocate on behalf of themselves. Self-advocates seek policy change in regards to issues that directly affect their lives. NDSS self-advocates are individuals with Down syndrome that speak out for and against policies that influence their education, recreational activities, independence and financial lives. 

A variety of sources were used to compile this information including the following:

Page last updated: June 3, 2016

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