Family SHADE

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Glossary of Terms

Acquired brain injury (ABI): Occurring after birth, an injury to the brain that is not hereditary, congenital or degenerative. Included are aneurysms, infections of the brain, stroke and accidents that result in traumatic brain injury, or TBI.

Activities of daily living (ADL): Activities include eating, dressing, bathing, using the toilet, getting in and out of bed and getting around inside the house. Assessments are often used to determine an individual’s ability to perform such tasks without assistance.

Adaptive behavior: An individual’s ability to take care of his or her personal needs and act appropriately in social situations.

Adaptive physical education: Teaching and recreation strategies to help support students with disabilities, allowing them to participate in physical education classes and activities.

Advocate: A person who supports the interests of people with disabilities and speaks on their behalf. To ensure equality for people with disabilities, an advocate takes action to promote the creation, modification or enforcement of laws, policies and procedures.

Age appropriate: Activities, events and materials to which a person is typically exposed at a certain age (e.g., co-ed dances in middle school).

Age norm: The age at which a person typically acquires a certain skill or behavior (e.g., walking or reading).

Americans with Disabilities Act (ADA): Passed in 1990, the primary civil rights law protecting individuals with disabilities. Designed to prevent discrimination in the workplace, improve access to services, and increase participation in local, state and federal governments.

Assessment, testing and evaluation: A process used to collect information and make decisions about a person’s development. The information can be used, for example, to determine eligibility for specific programs or services.

Assistive technology: Tools designed to help people with disabilities function more independently and complete everyday tasks (e.g., kitchen utensils with large grips, shower seats or specialized computers).

At risk: Children and adults affected by specific characteristics, behaviors or situations that may cause developmental delays (e.g., poverty).

Attendant services: Programs that provide personal care and support services to people with disabilities, allowing them to live in their own homes and interact with their communities.

Audiology: The study of hearing and hearing disorders.

Baseline: The level of skills demonstrated by a person prior to receiving services or instruction.

Care coordinator: This professional makes it easier for children with special health care needs and their families to connect with appropriate services and resources by coordinating this effort for them. In their important role of providing a medical home for all children, primary care physicians have a vital role in the process of care coordination, in concert with the family.

Case manager: A professional who works at a hospital or for a service delivery provider and has the following responsibilities: assesses a patient’s or client’s situation and needs; works with a patient or client and the family to develop an appropriate plan of care; and provides ongoing coordination to ensure a patient’s or client’s needs are met.

Chronic: A condition that is continuous or persistent over an extended period of time.

Cognitive: Pertaining to the mental processes of perception, memory, judgment and reasoning.

Customized employment: Employment that is individually tailored for job seekers who have complex needs and require more individual assistance to achieve their employment goals. The job seeker is the primary source of information and drives the process.

Decubitus: A skin sore caused by unrelieved pressure (also known as ulcer, pressure sore or bedsore).

Developmental disability: The federal definition of a developmental disability covers persons whose disability occurs before age 22 and includes a mental or physical impairment or a combination of both. There must be a substantial limitation in three or more of these major life areas: self-care, expressive or receptive language, learning, mobility, capacity for independent living, economic self-sufficiency or self-direction.

Developmental screening: A procedure designed to identify children who should receive more intensive assessment for potential developmental delays. Screening can allow for earlier detection of delays and improve health and well-being for the children who are identified.

Developmentally delayed: A child who develops cognitive, language, social, physical or sensory skills significantly later than his/her peers.

Durable medical equipment: Includes devices, controls or appliances that enable people to increase their ability to perform activities of daily living.

Early intervention services: Identifying potential developmental delays for children and treating these delays before the age of three.

Early and Periodic Screening, Diagnosis and Treatment (EPSDT): This federal mandate entitles children enrolled in Medicaid to the following services: early identification of problems, starting at birth; periodic checking of health at age-appropriate intervals; screening tests for physical, mental, developmental, dental, hearing, vision, etc.; diagnostic tests to follow up when a risk is identified; and treatment of the problems found for as long as is medically necessary to correct the condition or prevent worsening of symptoms/functioning.

Free and appropriate public education (FAPE): The guarantee (included in the Individuals with Disabilities Education Act) that all children with disabilities will receive cost-free, individually designed education between the ages of 3 and 21.

Home care: Provided when an individual needs assistance with daily personal routines and household chores in order to stay in his/her home.

Home health aide: An individual who has received the required number of hours of training about how to provide personal care (dressing, bathing, feeding, etc.). The aide provides the support in the home and is typically, but not always, employed by a home health agency.

Inclusion: The philosophy that people with disabilities should receive all their services and supports in the same settings and locations where people without disabilities live, work, worship, play or go to school.

Individualized Education Program(IEP): A customized written plan for a student with a disability, developed and agreed upon by the student’s family, teacher(s), school administrators, therapist(s), other specialists, and whenever possible, the student as well. The IEP, which can be amended at any time, designates specific goals for the student and the supports necessary to meet these goals.

Individualized Family Service Plan (IFSP): A unique plan—designed for a child under 3 years of age and his/her family—that emphasizes positive outcomes and the actions needed to reach them. The plan is developed by the family, early childhood educators and specialists.

Individualized Family Service Plan (IFSP): A unique plan—designed for a child under 3 years of age and his/her family—that emphasizes positive outcomes and the actions needed to reach them. The plan is developed by the family, early childhood educators and specialists.

Intellectual disability: A disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social and practical adaptive skills. This disability originates before age 18.

Learning disability (LD): A learning disability is more than a difference or difficulty with learning—it is a neurological disorder that affects the brain’s ability to receive, process, store and respond to information. It can make it difficult to acquire certain academic and social skills. It does not include learning problems that are primarily the result of visual, hearing or motor disabilities.

Least restrictive environment (LRE): An educational setting for a student with a disability that mirrors, as closely as possible, a general educational setting while providing the supports necessary to meet the student’s goals and objectives.

Level of Care (LOC): Typically one of three levels (low, moderate or high) of support that determines the frequency and intensity of services necessary for a person with a disability to meet his or her goals.

Long-term care: This term is used to describe various home and community based services for people who need help taking care of themselves. Longterm care can be provided in a variety of settings, including the home, a day program, assisted living facility, etc.

Mainstreaming: The time a person with a disability spends participating in activities alongside children or adults without disabilities in a school or community center setting.

Managed Care Organization (MCO): Managed care is an organized way to ensure that people receive the quality medical care they need in the most cost-effective manner. A managed care organization is a public or private organization that makes health care services available to enrolled participants. In Delaware, Medicaid benefits are provided mainly through a managed care organization. The Division ofMedicaid and Medical Assistance offers a choice of MCOs to allow people to select the plan that is best suited to their needs.

Medical home: In a family-centered medical home, the pediatric care team works in partnership with the child and his/her family to assure that all of the medical and non-medical needs of the patient are met. Care in a medical home is accessible, continuous, comprehensive, patient- and family-centered, coordinated, compassionate and culturally effective.

Mental age: It represents the level of thinking and reasoning an individual exhibits based on an assessment by a psychologist or educational diagnostician. Since mental ability is derived from more than justmeasures of age, the term should be used cautiously (e.g., the phrase “she has a mental age of 3 years” is rarely accurate).

Mental health disorder: The absence of emotional and psychological well-being; an individual has difficulty using cognitive and emotional capabilities, functioning in society, and/ormeeting the ordinary demands of everyday life.

Motor development: The skills needed to effectively move around one’s environment (gross motor skills) and to pick up, release and use objects (fine motor skills).

Occupational therapy: Therapy services that help a person to develop daily living and fine motor skills, such as writing, dressing and using utensils.

Ombudsman: An impartial person who advocates on behalf of a consumer and will investigate complaints and provide representation, education, information and other assistance for the individual.

Paratransit: Transportation provided by the local transit authorities for those who are unable to use the regular fixed route service safely. The Americans with Disabilities Act includes guidelines about who is eligible to utilize paratransit.

Patient- and/or family-centered care: A trusting, collaborative, working partnership with families, respecting their diversity and recognizing that they are the constant in a child’s life.

People-first language: People-first language puts the person before the disability and describes what a person has, not what a person is. (e.g. a person with autism, not an autistic person).

Physical therapy: Therapy services that help a person develop control over large muscle groups and improve movement (such as walking or sitting).

Placement: In the realm of education, the classroom or setting where a student receives schooling or IEP services.

Prescribed Pediatric Extended Care (PPEC): Out-patient health care service prescribed by a physician for children who are medically and/or technologically dependent. Included are services focused on meeting the physiological as well as developmental, physical, nutritional and social needs of the children served.

Respite care: A service for families that provides short-term (a few hours) or longer-term (a week or more) relief from caring for a person with a disability. These services may take place in the family’s home or in outside programs.

Self-advocate: A person with a disability who takes responsibility for his/her life. Self-advocates know their rights and stand up for these rights, helping to change unjust policies and procedures while bringing about positive change for themselves and others.

Self-determination: This practice supports people with disabilities in choosing their own life goals, the people who will provide support in achieving these goals, and the way in which the goals will be accomplished.

Service companion: A person who assists an individual with social and recreational activities and safety. According to current state regulations, the companion cannot provide personal care.

Service coordinator: A professional who assists families in finding, securing and monitoring the services necessary to support family members with disabilities.

Service provider: This term generally refers to agencies and individuals certified and selected to provide day and residential services for people with intellectual and developmental disabilities.

Skilled level of nursing: Skilled nursing services are services ordered by a doctor that require the skills of a licensed nurse and must be provided directly by or under the general supervision of the nurse to assure the safety of the patient and to achieve the medically desired result. The skilled need, physician’s recommendations and insurance coverage are all considered when deciding on the level of care and support an individual may receive.

Social and emotional wellness: The social and emotional wellness of a child is shaped by secure relationships with his/her primary caregivers in nurturing environments. Social and emotional wellness in a child from birth to 5 years is reflected through healthy attachments and the ability to confidently explore, regulate and express emotions in natural settings.

Special education services: In accordance with IDEA requirements, special education is in place to provide additional services, supports, programs and specialized placements or environments to ensure that the educational needs of all students are met. Special education services are provided to qualifying students at no cost to the parents. The range of special education support varies based on need and educational jurisdictions, but must meet the goals and objectives of an eligible student’s IEP. Eligibility is determined through educational testing that must be requested in writing by the parent or guardian.

Speech-language therapy: Therapy services that focus on the diagnosis and treatment of speech and communication disorders.

Support services: In educational settings, services (such as transportation, therapies and medical services) that allow a student with a disability to participate in school.

Supported employment: Supported employment helps individuals with the most severe disabilities, for whom competitive employment has not traditionally occurred, to engage in competitive work in an integrated work setting (a community setting that employs individuals with and without disabilities). Ongoing support services, such as job coaches, transportation, assistive technology, specialized job training and individually tailored supervision, allow these individuals to perform their jobs.

Universal design: Products, building and services that are designed so that all people, including those with any type of disability, can use them.

Vocational rehabilitation: The Division of Vocational Rehabilitation (DVR) is the state’s public program that helps people with physical and mental disabilities obtain or retain employment.

Waiver: States can use a waiver to request that the federal government remove certain federal restrictions on how Medicaid dollars are spent. For example, a waiver can allow the state to use Medicaid funding in a more flexible way to pay for home-based services for a specific population as an alternative to institutionalized care.