Independent Living and Disability Research Definitions

Advocacy

Public activism and organized promotion of the rights of people with disabilities to bring about change for individuals and the systems in which they live.

Americans with Disabilities Act (ADA)

In 1990, this federal law was passed that prohibits discrimination against people with physical or mental disabilities in employment, public services and places of public accommodation, such as restaurants and stores.

Center for independent living (CIL)

Found in every major city in the United States, centers for independent living (also known as independent living centers) advocate for the rights of people with disabilities and provide them with support services and programs they need to achieve self-sufficient and productive lives.

Community barriers

Besides physical inaccessiblity, other roadblocks such as stigma and social and political restrictions may keep people with disabilities from living their life to the fullest.

Community participation

Taking part in activities and opportunities beyond one's home as one chooses, including basic activities like shopping, going to the doctor and working; recreational activities such as exercising and museum-going; and civic activities such as volunteering, voting and serving on boards. This term can also refer to the process in which people with disabilities are active in decision making and policy development in their communities.

Consumer

The term consumer grew out of the independent living movement and signifies someone who selects services and has some control over them. It is preferred to words like patient or client because these terms imply that a person with a disability is someone who receives services but has little control over them.

Cost-Benefit Analysis theory

Originating with Jules Dupuit and developed by 20th century economists, cost benefit analysis theory is used to measure the benefits consumers get from what they consume. Basically, the formula is: How much are x’s benefits worth? Now, subtract the cost of x. Results can then be used to make decisions on whether or not to make a change. Time is a factor because costs can be one-time or ongoing. Benefits, too, may be immediate or ongoing. 

Deinstitutionalization

Both a policy and a practice, this movement that began in the 1960s has reduced the number of people living in state-operated institutions and increased the number of people needing support to live in their communities. 

Functional ability

How well a person can perform activities of daily living without help from someone else constitutes a measure of their functioning.

Home and Community-Based Services (HCBS) Waiver Program

In 1981, legislation was passed to fund the HCBS program, which allows states to use Medicaid funds to pay for home and community services for Medicaid-eligible individuals who have disabilities. States must show that these individuals are at risk of being placed or remaining in institutions without these waiver-provided services. Additional legislation has provided Community Supported Living Arrangements for Medicaid-eligible persons with mental retardation and/or developmental disabilities that does not require the person to be at risk of institutionalization.

Health care access

Other, broader views of secondary condition definitions include environmental factors such as access to health services and structural barriers located within the environment that affect the health status of people with disabilities. Counter to this view is that environmental barriers actually represent issues of limited participation, not secondary conditions. 

Independence vs. interdependence

The ability to live independently, that is, not in an institution and by one self, became a goal of disability advocates in the 1960s. However, interdependence — a reciprocal relation between individuals — may be a more accurate term. As the poet John Donne, said, "No man or woman is an island entire of itself." Interacting with those in the community rather than trying to do everything by one’s self also provides the opportunity to develop beneficial relationships.

International Classification of Functioning, Disability, and Health

First created in 1980 by the World Health Organization and revised continually since, the ICIDH offers a unifying framework for classifying disease consequences. Its classification complements WHO’s International Classification of Diseases, which contains information on diagnosis and health condition, but doesn’t include functional status.

Medical model

In this view, a person’s disability is thought of as his or her problem that may be “cured” or made “more normal” by medical, social, occupational, and other means. Disability rights advocates say this view promotes a negative, disempowered image of people with disabilities. It makes the “abnormal” individual have the problem rather than assigning the problem to the political, social, and physical environment.

Olmstead decision

The 1999 U.S. Supreme Court Olmstead v. L.C. ruling reinforced the Americans With Disabilities Act stance on institutionalization of people with disabilities. The ruling made it discriminatory to keep someone in an institution if the person wanted to live in the community with appropriate services. It also promoted the practice of people with disabilities living in the "most integrated setting," which the U.S. Department of Justice defines as a setting that makes it easier for people with disabilities to interact with non-disabled people to the fullest extent.

Personal assistance 

At first, this paid support was confined to medical, hygiene, and mobility assistance. It has now expanded to include everyday support, such as recreation, transportation, reading, interpreting, shopping, budgeting, and meal preparation.

Rehabilitation

A process that maximizes individuals' ability to live independently in their community, rehabilitation initially focused on medical needs or employment.

Secondary conditions

This term typically has been used in a medical context to describe physiological conditions that can result from an original illness or condition. For example, people with spinal cord injuries are at risk for the secondary conditions of pressure sores, urinary tract infections, and deconditioning. The Healthy People 2010 Report expands secondary conditions to include social, emotional, family, or community problems that a person with a primary disabling condition may experience. 

Social capital

Based on relationships and how those relationships achieve a common good, social capital is a resource that people with disabilities can use and offer. 

Social Security Disability Insurance

Monthly benefits are provided to disabled workers and their dependents through this plan funded by Social Security. Participants must have accrued sufficient quarter-years of employment and payment into the system to qualify for benefits.

Supplemental Security Income

The federal government provides income support to people 65 and over, adults and children with blindness or disabilities who have little or no financial resources. To be considered, an adult must not be able to participate in gainful activities because of physical or medical impairment that will result in death or at least 12 months.

Specific to research

Abstract

Typically, an abstract describes the study purpose, participants, methods used, results, and implications in about 150 words. These condensed reports not only help researchers quickly locate information that might apply to their research, they make it easier for a variety of audiences to access the study information.

Interventions

Something done to, as to modify a process or situation.

Literature review

Before a study begins, a comprehensive survey of scholarly publications in a specific field of study or related to a particular line of research is done to determine what is known about a topic.

Measurement System

System for gathering information, such as direct questioning of people or observations of them. The persons studied might also be asked to report their feelings, symptoms or other information without being asked specific questions

Participants

Who was involved

Qualitative research

Depends on personal interviews, life stories or the gathering of other writing about personal life experiences. Qualitative research involves collecting information about a topic but not really using numbers or statistics to prove something.

Quantitative Research: 

Focus on specific factors, or variables, and tries to determine which factors are responsible for certain behaviors. This method often uses numbers to analyze.

Safeguards

System for assuring that the data gathered were reliable (such as having two people collect data and compare results

Scientific method

Investigation generally includes observing something, learning more about what others have found out on the subject, coming up with a probable reason about that thing, an experiment to see if this theory is correct or not, and a conclusion that supports or changes the theory. The experiment should be done in a way that other scientists could do the same experiment and get similar results.

Setting

Where the study took place

Variable

Independent Variable:

Something the researcher manipulated to see what effect it would have

Dependent Variable:

Changes in a person or his/her environment that result from applying the independent variable