Glossary

Americans with Disabilities Act (ADA) of 1990 *Last Amended in 2008*
The Americans with Disabilities Act (ADA) was signed into law under President George H W Bush in 1990. It applies to all private and state-run businesses, employment agencies and unions with more than fifteen employees. The goal of the ADA is to make sure that no qualified person with any kind of disability is turned down for a job or promotion or refused entry to a public-access area.

Disabled World News (2009-01-14): http://www.disabled-world.com/disability/ada/ada.php#ixzz21kX6gdO1

The Americans with Disabilities Act gives civil rights protections to individuals with disabilities similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion. It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, State and local government services, and telecommunications.

US Department of Justice: ADA Questions and Answers – www.ada.gov/q%26aeng02.html
Americans with Disabilities Act, As Amended - http://www.ada.gov/pubs/adastatute08.htm

Advance directives
A written instruction, such as a living will or durable power of attorney for health care, recognized under state law (whether statutory or as recognized by the courts of the State), relating to the provision of health care when the individual is incapacitated.

US Code: 42 USC § 1395cc(f)(3) Found at www.law.cornell.edu

Assistive Technology (AT)
An assistive technology device is “any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities." This term does not refer to medical devices that are surgically implanted or the replacement of such device.

An assistive technology service is “any service that directly assists an individual with a disability in selection, acquisition or use of an assistive technology device."

Definitions based on the Technology Related Assistance to Individuals with Disabilities Act and the Individuals with Disabilities Education Act. Definitions found at www.nectac.org/topics/atech/definitions.asp

AT Access Site
Assistive Technology for Kansans (ATK) access sites connects people with disabilities and health conditions of all ages with the assistive technology they need to learn, work, play and participate in community life safely and independently. 

For more information http://www.atk.ku.edu/

Career and Technical Education (CTE) program
Kansas CTE programs provide students with relevant contexts for learning through pathways to college and career readiness.

Kansas State Department of Education: CTE 2012 Fact Sheet www.ksde.org

Center for Child Health and Development (CCHD)
A University of Kansas, Medical Center clinic that provides evaluation and diagnosis services for children who may have developmental disabilities (DD) including autism spectrum disorders and Fragile X syndrome. Additionally, the CCHD works with families, schools and communities to develop treatment plans.

Center for Child Health and Development: www.kumc.edu/cchd/index.html

Centers for Independent Living (CIL)
Advocacy-driven organizations that provide services to people with disabilities. They have a focus on civil rights, the independent living philosophy and inclusion. CILs provide individual and system advocacy, information and referrals, peer supports and independent living skills training. Information about the CILs in Kansas can be found at www.silck.org.

National Council on Independent Living  - www.ncil.org/about/CentersforIndependentLiving.html

Charitable Health Program
A Kansas Department of Health and Environment program that works to increase the provision of medical care to the medically indigent by providing liability coverage to health care professionals.

Kansas Department of Health and Environment: Charitable Health Program – www.kdheks.gov/olrh/CHP.htm

Circle of Support
A group of people selected by an individual with disabilities to help plan, design and support ways for the individual to achieve his or her personal goals. A circle can include friends, family, classmates, co-workers, professionals, and other community members.

College Resources for Students with Disabilities
A guide to help prospective college students with disabilities make their transition to postsecondary education less stressful. Find specific information and resources on a variety of different disabilities, learn how to make the transition into the workforce easier, and find out what your legal rights on campus are. http://www.affordablecollegesonline.org/college-resource-center/resources-for-students-with-disabilities/

Community Developmental Disability Organization (CDDO)
The single point of entry to obtain services through the developmental disabilities system in Kansas. They are responsible for determining whether a person qualifies for services, working with the person and/or the person’s family or guardian in choosing from service options and referring those persons to other agencies if additional supports are needed. A map to locate the CDDO in your region is available www.kdads.ks.gov.

Developmental Disability
Developmental disability is defined in the DD Reform Act as “Mental Retardation (substantial limitations in present functioning that is manifested during the period from birth to age 18 years and is characterized by significantly sub-average intellectual functioning existing concurrently with deficits in adaptive behavior including related limitations in two or more of the following applicable adaptive skill areas: Communication, self-care, home living, social skills, community use, self-direction, health and safety, functional academics, leisure and work).”

State of Kansas Department of Social and Rehabilitation Services Disability and Behavioral Health Services Community Supports & Services http://csp.kdads.ks.gov/agency/css/Documents/DD%20Waiver/CLC_Manual_7.28.09.pdf


Developmental Disability MR/DD Waiver
The HCBS MRDD Waiver serves individuals age 5 and over who meet the definition of mental retardation or having a developmental disability or are eligible for care in an Intermediate Care Facility for people with Mental Retardation (ICF/MR).

Kansas Department for Aging and Disability Services- HCBS for People with Developmental Disabilities http://csp.kdads.ks.gov/agency/css/Pages/DDwaiver/DevelopmentalDisabilities.aspx

Durable Power of Attorney for Health Care
A document that designates an agent or proxy to make health care decisions if the patient is not able to make them. This document allows a surrogate person to be named to make decisions regarding all treatment, including the final decision about cessation of treatment.

Definition from The Free Dictionary at http://medical-dictionary.thefreedictionary.com

Employment 1st Initiative
An initiative to make employment the first option for people with disabilities.

Employment 1st Initiative in Kansas – www.employment1st.org

Employment Network
An organization that works with the Social Security Administration to help individuals receiving benefits become gainfully employed.

Family-Centered Care
Family-Centered Care assures the health and well-being of children and their families through partnerships. It honors the strengths, cultures, traditions, and expertise that everyone brings to this partnership.

National Center for Family-Professional Partnerships (NCFPP) at www.fv-ncfpp.org

504 Plan
Section 504 of the Rehabilitation Act of 1973 is federal law that protects individuals from discrimination because of their disabilities.

Health Care Transition (or Health Transition)
The purposeful, planned, and timely transition from child and family-centered pediatric health care to patient-centered adult-oriented health care.

Society for Adolescent Medicine, 1993. Obtained from GotTransition? at www.gottransition.org

Home and Community-Based Services
The 1915(c) Home and Community-Based Waivers are one of many options available to states to allow the provision of long term care services in home and community based settings under the Medicaid Program. States can offer a variety of services under an HCBS Waiver program. Programs can provide a combination of standard medical services and non-medical services. Standard services include but are not limited to: case management (i.e. supports and service coordination), homemaker, home health aide, personal care, adult day health services, habilitation (both day and residential), and respite care. States can also propose “other” types of services that may assist in diverting and/or transitioning individuals from institutional settings into their homes and community.   Learn more at http://www.medicaid.gov/

Individuals with Disabilities Education Act (IDEA)
IDEA is a federal law that governs special education for students with disabilities from ages 3 to 21, or until high school graduation.

Individualized Education Plan (IEP)
This is a written document listing, among other things, the special educational services that the child will receive. The IEP is developed by a team that includes the child’s parents and school staff. The IEP is an extremely important document in the educational lives of students with disabilities receiving special education under IDEA.

“All About the IEP” information found on the National Dissemination Center for Children and Disabilities (NICHCY) website at www.nichcy.org/schoolage/iep

Individualized Healthcare Plan (IHP)
A written document designed to meet the specific health care needs of the student within the school environment. This document should be developed by the parents, student, school nurse and other team members who play a role in the student’s school day.
“How to Have Effective Individualized Health Care” informational brochure developed by the Kansas Department of 
Health and Environment and Families Together, Inc. Document can be found at www.familiestogetherinc.org.

Intellectual disability
Intellectual disability is a term used when a person has certain limitations in mental functioning and in skills such as communicating, taking care of him or herself and social skills. These limitations will cause a child to learn and develop more slowly than a typical child.

National Dissemination Center for Children with Disabilities www.nichcy.org

Kansas Center for Autism Research  and Training (KCART)
The Kansas Center for Autism Research and Training (K-CART) at the University of Kansas, established in 2008 with private and public funds, is a new multidisciplinary center that promotes research and training on the causes, nature and management of autism spectrum disorders (ASD). Committed to the highest standards of scientific rigor, K-CART will generate new scientific discoveries about ASD, disseminate research-based practices by training professionals, practitioners and families who serve children and adults with autism, and provide clinical services through the Center for Child Health and Development at the University of Kansas Medical Center.

Learn more at www.kcart.ku.edu

Kansas Commission on Disability Concerns (KCDC)
Organization in Kansas that provides disability-related information to consumers in Kansas. They want to ensure people with disabilities are equal members of their community and partners in society. They provide policy recommendations to the State of Kansas on changes to laws, regulations, and programs that affect people with disabilities. For more information, visit www.kcdcinfo.org.

Kansas Department of Health and Environment (KDHE)
The State Agency dedicated to protecting and improving the health and environment of all Kansans. KDHE optimizes the promotion and protection through public health programs and services and through preservation, protection and remediation. 

Definition from KDHE and State of Kansas websites.

Kansas Health Insurance Association (KHIA)
An association that provides health insurance to Kansas Residents who have been denied coverage. Visit www.khiastatepool.com for more information.

Limited license
An organization that affiliates with a CDDO to provide direct services to consumers.  A limited license is limited to the number of persons that can be served, and is NOT a guarantee of continued service provision. Limited to not more than 2 persons that “specifically” request and are determined by the CDDO to potentially benefit from a specialized service that is not available through traditional providers.

Learn more at http://www.kdads.ks.gov/index.html

Medical Home (also Patient-Centered Medical Home or PCMH)
A model of delivering care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally-effective.

American Academy of Pediatrics (AAP) Definition

An approach to providing comprehensive primary care for children, youth, and adults. The PCMH is a health care setting that facilitates partnerships between individual patients, and their personal physicians, and when appropriate, the patient’s family.

Joint Definition of the American Academy of Family Physicians, the American Academy of Pediatrics, 
American College of Physicians, and the American Osteopathic Association

Medical Transportation Management (MTM)
MTM is a Medicaid service to help set up rides for Kansas Medicaid members to get to and from medical appointments. Learn more http://www.mtm-inc.net/kansas

Paratransit
Paratransit services may vary considerably on the degree of flexibility they provide their customers. At their simplest they may consist of a taxi or small bus that will run along a more or less defined route and then stop to pick up or discharge passengers on request. The most flexible paratransit systems offer on-demand call-up door-to-door service from any origin to any destination in a service area. Paratransit services are operated by public transit agencies, community groups or not-for-profit organizations, and for-profit private companies or operators. Most public paratransit vehicles are equipped with wheelchair lifts or ramps to facilitate access.

Plan to Achieve Self-Support Plan (PASS)
PASS is an Supplemental Security Income (SSI) provision to help individuals with disabilities return to work.  PASS lets disabled individual set aside money and/or things he or she owns to pay for items or services needed to achieve a specific work goal.

Learn more at Social Security http://www.socialsecurity.gov/disabilityresearch/wi/pass.htm/

Patient-Centered Care
Similar to the family-centered care, but generally referring to the adult patient population, rather than the pediatric population.

Person-Centered Plan (PCP)
Person Centered Planning is an ongoing problem-solving process used to help people with disabilities plan for their future. In person-centered planning, groups of people focus on an individual and that person's vision of what they would like to do in the future. This "person-centered" team meets to identify opportunities for the focus person to develop personal relationships, participate in their community, increase control over their own lives, and develop the skills and abilities needed to achieve these goals. Person Centered Planning depends on the commitment of a team of individuals who care about the focus person. These individuals take action to make sure that the strategies discussed in planning meetings are implemented.

Pacer Center http://www.pacer.org/tatra/resources/personal.asp

Physical Disability (PD) Wavier
The Physical Disabilities Waiver serves individuals age 16 to 65 years of age who meet the criteria for nursing facility placement due to their physical disability, who are determined disabled by social security standards, and who are Medicaid eligible. The individual must need assistance to perform normal rhythm of the day and meet Medicaid nursing facility threshold.

Kansas Department of Aging and Disability Services    http://csp.kdads.ks.gov/agency/css/Pages/Physical%20Disabilities/PhysicalDisabilities.aspx#howtoqualify

Pre-existing Condition Insurance Plans (PCIP)
A federal qualified high risk pool program administered in Kansas by the Kansas Health Insurance Association (KHIA). For more information, visit www.khiastatepool.com.

Representative Payee
A representative payee is an individual or organization appointed by SSA to receive Social Security and/or SSI benefits for someone who cannot manage or direct someone else to manage his or her money. The main responsibilities of a payee are to use the benefits to pay for the current and foreseeable needs of the beneficiary and properly save any benefits not needed to meet current needs.  A payee must also keep records of expenses.  When SSA requests a report, a payee must provide an accounting to SSA of how benefits were used or saved.

NOTE: Having power of attorney, being an authorized representative or having a joint bank account with the beneficiary is not the same thing as being a payee. These arrangements do not give legal authority to negotiate and manage a beneficiary’s Social Security and/or SSI payments. In order to be a payee a person or organization must apply for and be appointed by SSA.

Social Security www.socialsecurity.gov/payee/faqrep.htm

Residential provider
A residential provider is a non-institutional setting that provides assistance, acquisition, retention and/or improvement in skills related to activities of daily living, such as: personal grooming and cleanliness, bed making and household chores, eating and the preparation of food and the social and adaptive skills. Some residential providers are licensed and are affiliates with a CDDO to provide direct services to consumers.

Serious Emotional Disturbance (SED) Waiver
Services provided under the SED Waiver are for children between 4-18 years of age who experience serious emotional disturbance and who are at risk of inpatient psychiatric treatment. SED Waiver services provide children with special intensive support so they may remain in their homes and communities. Parents and children are actively involved in planning for all services.

Kansas Department for Aging and Disability Services http://csp.kdads.ks.gov/agency/mh/Pages/Services/managedcare.aspx

Social Security Disability Income (SSDI)
Social Security pays benefits to people who cannot work because they have a medical condition that is expected to last at least one year or result in death. Federal law requires this very strict definition of disability. While some programs give money to people with partial disability or short-term disability, Social Security does not.

If a child is age 18 or older, we will evaluate his or her disability the same way we would evaluate the disability for any adult. We send the application to the Disability Determination Services in your state that completes the disability decision for us.

Social Security http://www.ssa.gov/pubs/10029.html

Supplemental Security Income (SSI)
Supplemental Security Income (SSI) is a Federal income supplement program funded by general tax revenues (not Social Security taxes).  It is designed to help aged, blind and disabled people, who have little or no income and provides cash to meet basic needs for food, clothing and shelter.

Social Security http://www.socialsecurity.gov/ssi/

Targeted Case Management (TCM)
Targeted Case Management services are services which will assist an individual eligible under the State plan in gaining access to needed medical, social, educational and other services. Targeted Case Management may include: assessment of an eligible individual to determine services needs; development of a specific care plan; referral and related activities; monitoring and follow-up activities. Targeted Case Management does not include the direct delivery of an underlying medical, educational, social or other service to which an eligible individual has been referred.

Kansas Department for Aging and Disability Services - Targeted Case Management http://csp.kdads.ks.gov/agency/css/Pages/DDTCM.aspx

TA Waiver
The TA Waiver serves individuals who are age 0 through 21 years, chronically ill or medically fragile and dependent upon a ventilator or medical device to compensate for the loss of vital bodily function and require substantial and ongoing daily care by a nurse, comparable to the level of care provided in a hospital setting, or other qualified caregiver under the supervision of a nurse to avert death or further disability.

Furthermore, the individual is hospitalized or at imminent risk of hospitalization, whose illness or disability, in the absence of home care services, would require admission to a hospital.

Kansas Department for Aging and Disability Services – TA Waiver
http://csp.kdads.ks.gov/agency/css/Pages/TAwaiver/TechnologyAssisted.aspx

TBI Waiver
A traumatic brain injury is defined as an insult to the brain caused by an external physical force that results in total or partial functional disability and/or psychosocial impairment. The TBI Waiver provides the services needed after injury to insure that individuals can stay in their homes and be as independent as possible in a safe, healthy environment. The TBI Waiver program serves individuals 16 to 65 years of age who meet the criteria for TBI rehabilitation hospital placement.

Kansas Department for Aging and Disability Services - Traumatic Brain Injury
http://csp.kdads.ks.gov/agency/css/Pages/TBIwaiver/BrainInjury.aspx

Transition
For the sake of this website, transition refers to the movement to adulthood, including health, work, education, independent living and all aspects of life. There are many different transition programs in Kansas, each with their own unique definition.