Glossary of Terms Related to Independent Living 
and Disability Research

Accessibility: This is the ability of a house, product, place, program, etc. to be easy, not difficult, to use or reach.

Activities of daily living (ADL): Routine activities that a person does every day such as standing, sitting, eating, bathing, and grooming that can be done by the individual or care provider.

Adaptive skills: These skills are typically needed to live and work in the community: communication, self-care, home living, social skills, leisure, health and safety, self-direction, functional academics, community use and work.

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.
 
Assistive technology: Equipment or devices, such as wheelchairs, walkers, or speech aids that help a person perform activities of daily living, ranging from simple aids to complete machinery.

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. These nonresidential resource centers are run by and for people with disabilities, as well as for the benefit of the entire community. Their core services include advocacy, information and referral, independent living skills training, peer counseling and, most recently, de-institutionalization of people with disabilities.

Community barriers: Besides physical inaccessibility, 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.

Consumer control: Consumer control is the heart of independent living. It stresses the consumer's right to determine his or her life direction and to make all decisions related to that direction. A project or organization that is consumer controlled is directed, managed, and staffed to a large degree by qualified persons with disabilities.

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. 

Diagnostic and Statistical Manual (DSM): Used mainly in clinical settings, this guide provides a classification and description of mental disorders and symptoms, and is cited in many disability studies.

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 intellectual 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. 

Inclusion: This is the process and outcome of including people with disabilities in the community, so they can live like other citizens, enjoy full civil rights, and contribute to the community. Involvement is at the consumer's desired level.

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.

Independent living (IL): IL refers to the philosophy that people with disabilities should be able to make decisions that affect their own lives. IL also refers to a civil rights movement that advocates for equal participation in community life, and a service system made up of centers for independent living. In practice, independent living focuses on social attitudes and physical barriers rather than a person's limitations. Instead of emphasizing a person's disability, IL stresses an individual's right to certain types of help and assistance to succeed. This assistance can include supports such as adaptations to the living space, personal assistance or changing policies to promote the ability to live independently.

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.

Managed care: An approach to health care financing, this insurance form attempts to control the use and cost of health care services.  Offering incentives, implementing cost restrictions, influencing a consumers' choice of providers, establishing networks, and improving coordination of services are used as methods to manage costs.

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.

Natural supports: When friends, neighbors, relatives, coworkers, and others volunteer to help a person with a disability live a more independent life, they are called "natural" social supports.

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.

Participatory Action Research: Participatory Action Research (PAR) is one way to obtain information that end-users identify as important and are likely to need. This approach emphasizes a collaborative attitude toward research and training. A bridge between research and knowledge utilization, PAR increases the probability that problems are not only identified and solved, but also that constituents find the solutions worthwhile.

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.

Person-centered planning: Instead of focusing on a person's deficits and disability, this form of planning makes the most of a person's abilities, preferences, and ambitions. It is a changing problem-solving process that reflects the changes in the individual's life.

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

Research and training centers: Funded by the National Institute of Disability Rehabilitation and Research, these organizations are designed to solve long-term issues in disability and are typically located at institutions where long-term support can insure that their missions are accomplished.

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. 

Self-determination: The consumer makes choices and decisions regarding his or her life without excessive influence or interference by others in this practice. This may vary for each person, depending on the person's circumstances and disabilities.

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 or disability model: The social model, unlike the medical model, regards disability as a neutral difference between people and acknowledges that people with disabilities can be healthy. In the social model, problems related to disability are caused by the interaction between the individual and the environment rather than the individual’s disability itself. These problems can be remedied by changing social attitudes, physical environments, public policies, and other barriers to full participation. People in the disability community prefer this to the medical model because it does not regard the person with a disability as defective or wanting.

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.

Supported employment: The Rehabilitation Act of 1993 defines supported employment under Title VI Part C as competitive work in integrated work settings. It is for persons with severe disabilities who need support to find and hold a job. Supported employment includes pay for real work, working with non-disabled coworkers, ongoing support for job retention (for assistance, a job coach), and interagency cooperation and funding of these services.

Supported living: Central to the concept of supported living is the goal of a supportive environment, living in one's home, and being included in the community. Many states use the Medicaid HCBS waiver to finance supported living.

Transition: Transition is a term used for the systematic passage or "bridge" between one phase of life to another. Often, this term is used for when people with disabilities leave an institution for the community or school for adult life. Schools are required by federal law, especially the Individuals With Disabilities Education Act (IDEA), to provide transition planning and services. According to IDEA, by age 16 (age may vary by state), a student's individual education plan (IEP) should describe needed transition services and detail how the school will provide instruction, community experiences, the development of the IEP and other post-school adult activities 

Universal design: The design of products and environments to be usable by all people without the need for adaptation or specialized design is the basis of this principle.


Definitions Related 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.

Socio-demographic: Relates to or involves a combination of social and demographic factors. Social factors include groups that a person belongs to, while demographics focus on population characteristics, such as age, race, gender, and income.

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.


What's That Mean?

glossary of terms related to independent living

A guide to acronyms and abbreviations commonly used in the disability community and research field

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Do you have questions about disability issues or how to use our research on community living in your life or work? Just email Val Renault, vrenault@ku.edu, for technical assistance.

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