Glossary of Frequently Used Terms
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ABLE Account: Tax-advantaged savings accounts for individuals with disabilities and their families, created as a result of the passage of the Stephen Beck Jr., Achieving a Better Life Experience Act of 2014 or better known as the ABLE Act.
ACCESS Card: Medicaid recipients present this card to doctors and health care professionals to verify their eligibility for medical services covered by Medicaid.
Accessible: In the case of a facility, readily usable by a particular individual; in the case of a program or activity, presented or provided in such a way that a particular individual can participate, with or without auxiliary aid(s); in the case of electronic resources, usable by everyone, with or without adaptive computer technology.
Accommodation: An adjustment to make a workstation, job, program, facility or resource accessible to a person with a disability.
Adaptive Technology: Hardware or software that provides access to a computer that is otherwise inaccessible to an individual with a disability.
Agency with Choice: Qualified support staff are employed by an agency who works together with the individual/family/representative to: 1) recruit qualified support service workers to the agency for hire to support that person, 2) provide and/or participate in training worker(s) to support that person, 3) determine the worker(s) work schedule, 4) determine the tasks to be performed and how they are performed, 5) manage the day to day activities of that person’s worker, and (6) dismiss support workers as necessary. (The agency is the actual employer of record but you have a say in who is hired, staff scheduling and in managing the staff.)
Americans with Disabilities Act of 1990 (ADA): A comprehensive federal law that prohibits discrimination on the basis of disability in employment, public services, public accommodations and services operated by private entities and telecommunications.
Applied Behavior Analysis (ABA): Applied Behavior Analysis is the discipline devoted to the application and evaluation of the principles of behavior to improve problems of social significance.
Area Agency on Aging (AAA): There are 52 Area Agency on Aging, covering all 67 counties. They are the local representatives for the Pennsylvania Department of Aging; they administer various programs and services available to older Pennsylvanians.
Assistive Technology: Special hardware and software used to assist a person with a disability by providing a solution to inaccessible features found in commercial products.
Attendant Care: Provides in-home personal assistance services, such as help with bathing, dressing, meal preparation and housekeeping. These services differ from traditional homemaker and chore services in that they recognize the consumer’s right to make decisions regarding the level and intensity of care; provide hands-on personal care services; and are available at any time depending on the consumer’s needs.
Autism: Autism or autism spectrum disorder (ASD), refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences.
Bureau of Hearings and Appeals (BHA): Departmental office that conducts formal appeals and hearings. The BHA receives notice of appeal from the Administrative Entity (AE). In the service review process, the BHA receives the Office of Developmental Programs (ODP) service review determination to inform the fair hearing proceedings.
Case Management: See Supports Coordinator, Service Coordinator
Centers for Medicare and Medicaid Services (CMS): Federal agency in the Department of Health and Human Services that oversees the Medicaid, Medicare and State Children’s Health Insurance programs.
Communication Device: Hardware that allows people who have difficulty using their voices clearly to use words or symbols for communication. May range in complexity from a simple picture board to complex electronic devices that allow personalized, unique construction of ideas.
Community Residential Facility: A licensed personal care home, domiciliary care home or community home for people with an intellectual disability or other related conditions.
Community Resources: Educational, recreational, civic, and other public services, buildings and agencies available to the general public.
County Assistance Offices (CAO): The 105 County Assistance Offices, which cover all 67 counties, administer Department of Public Welfare assistance programs, including food stamps, Medicaid, and cash assistance.
Disability: A physical or mental impairment that substantially limits one or more major life activities; a record of such an impairment; or being regarded as having such an impairment (Americans with Disabilities Act of 1990).
Early Intervention: Early intervention services are a range of targeted services to help young children who have developmental delays or specific health conditions. Different types of specialists work with these kids. Providing services early helps children catch up and increases their chances for success in school and life overall. Early intervention services are provided under the Individuals with Disabilities Education Act (IDEA).
Executive Functioning: The executive functions all serve a "command and control" function; they can be viewed as the "conductor" of all cognitive skills. Executive functions help you manage life tasks of all types. For example, executive functions let you organize a trip, a research project, or a paper for school.
Fair Hearing and Appeal: The right to have a hearing before the Department of Human Services, Bureau of Hearing and Appeals when the individual is: not offered the choice between an ICF/MR and waiver services; denied the service option of choice; denied the choice of a willing, qualified waiver provider and Home- and community-based services received are reduced, terminated or suspended without consent.
Family Driven Support Services (FDSS): State-funded services provided to individuals and families. FDSS funds are limited.
Financial Management Services (FMS): An organization that provides assistance with employer-related tasks (example, payroll) for people who direct their own qualified support workers. At a minimum, FMSs cut paychecks for an individual’s support providers, take care of paying employment taxes and filing for workers compensation insurance on behalf of a person. Pennsylvania has two FMS models:
FAPE (Free and Appropriate Public Education): Is an educational right of children with disabilities in the United States that is guaranteed by the Rehabilitation Act of 1973(1) and the Individuals with Disabilities Education Act (IDEA). Under Section 504, FAPE is defined as, "...the provision of regular or special education and related aids and services that are designed to meet individual needs of handicapped persons as well as the needs of non-handicapped persons are met and based on adherence to procedural safeguards outlined in the law." Under the IDEA, FAPE is defined as an educational program that is individualized to a specific child, that meets that child's unique needs, provides access to the general curriculum, meets the grade-level standards established by the state, and from which the child receives educational benefit.(2) The United States Department of Education issues regulations that define(3) and govern(4) the provision of FAPE. To provide FAPE to a child with a disability, schools must provide students with an education, including specialized instruction and related services, that prepares the child for further education, employment, and independent living.(5)
Financial Eligibility: Income and resource limits that have been established in order for people to qualify for Medicaid Waiver services and other MA services.
Guardian: A court-appointed person who has the legal responsibility for the care and management of an estate, minor or person declared incapacitated.
Habilitation Supports Waiver (HSW): HSW is an intensive home and community based, active treatment and support program, designed to assist individuals with severe developmental disabilities to live independently with supports in their community of choice.
Health Care Professionals: Licensed or certified provider of health care services, including physicians, psychologists, therapists and nurses.
Home: Any place a person chooses to live.
Home and Community Based Services (HCBS): Services and supports provided in a home or community location to help persons live as independently as possible. These services include in-home supports, community group homes, transportation, etc.
Home and Community Services Information System (HCSIS): The web-based system that Pennsylvania uses for data entry and tracking of Individual Support Plans, individual (demographic, enrollment and eligibility) information, Prioritization of Urgency of Need for Services (PUNS), Supports Coordination monitoring and service notes, incident reports and support provider information.
Hospice: Programs that provide for the physical and emotional needs of people with terminal illnesses.
IDEA: The Individuals with Disabilities Education Act (IDEA) is a federal law that requires schools to serve the educational needs of eligible students with disabilities. Schools must find and evaluate students suspected of having disabilities - at no cost to parents.
Inclusion: Regarding individuals with disabilities and special education, inclusion secures opportunities for students with disabilities to learn alongside their non-disabled peers in general education classrooms.
Individualized Education Plan (IEP): The Individualized Educational Plan (IEP) is a plan or program developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services
Individual Support Plan (ISP): An integrated planning document reflecting “Person-Centered Planning,” the core values of Everyday Lives and Positive Approaches to result in an enhanced quality of life for everyone who receives mental retardation services and supports in Pennsylvania. The ISP must outline the services and supports that address a waiver participant’s needs.
Intellectual Disability (ID): A disability characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 22 in Pennsylvania.
Intermediate Care Facility for Persons with Other Related Conditions (ICF/ORC): A facility that provides health care, rehabilitation, and active treatment services for persons with severe physical developmental delays such as cerebral palsy, muscular dystrophy, epilepsy, or similar conditions diagnosed before the age of 22 and that result in three or more functional limitations of daily living. Services are not designed for persons with mental illness or an intellectual disability.
Intermediate Care Facility for Persons with an Intellectual Disability (ICF/ID): A licensed facility that provides care designed to meet the needs of persons with an intellectual disability (ID) who meet the ICF/ID level of care criteria and who require special health and rehabilitation services.
Least Restrictive Environment (LRE): LRE means that a student who has a disability should have the opportunity to be educated with non-disabled peers, to the greatest extent appropriate. They should have access to the general education curriculum, or any other program that non-disabled peers would be able to access. The student should be provided with supplementary aids and services necessary to achieve educational goals if placed in a setting with non-disabled peers.
Long Term Care: Services designed to provide diagnostic, therapeutic, rehabilitative, supportive, or maintenance services for individuals who have chronic functional impairments. Services may be provided in a variety of institutional and non-institutional settings including the home.
Long Term Nursing Facility: An institution licensed to provide nursing home services to residents. The facility may be for-profit, non-profit, hospital-based or operated by a county. This does not include personal care homes, domiciliary care homes or boarding homes and also does not include community care that does not operate under a long-term nursing facility license.
Mainstreaming: The inclusion of people with disabilities, with or without special accommodations, in programs, activities and facilities with nondisabled people.
Major Life Activities: Functions such as caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, working and participating in community activities (Americans with Disabilities Act of 1990).
Medical Assistance: Health and long-term care services established under the Social Security Act, which a state adopts through its stated Medical Assistance (MA) plan or under an approved Medicaid Waiver.
Medical Assistance for Workers with Disabilities (MAWD): A state Medical Assistance program that encourages people to work. It allows people to maintain a much higher income and resource level than they would under the current Medical Assistance (MA) program.
Medicaid/ Medicare: Medicaid is a joint federal and state program that helps with medical costs for some people with limited income and resources. Medicaid also offers benefits not normally covered by Medicare, like nursing home care and personal care services. Medicare is an insurance program. Medical bills are paid from trust funds which those covered have paid into. It serves people over 65 primarily, whatever their income; and serves younger disabled people and dialysis patients. Patients pay part of the costs through deductibles for hospital and other costs. Small monthly premiums are required for non-hospital coverage. Medicare is a federal program. It is basically the same everywhere in the United States and is run by the Centers for Medicare & Medicaid Services (CMS), an agency of the federal government.
Medically Needy: Eligibility for Medicaid under specific financial requirements that includes income limits after incurred medical expenses have been deducted from the income.
Mental Health Services: Assessment, diagnosis, treatment or counseling in a professional relationship to assist an individual or group in alleviating mental or emotional illness, symptoms, conditions or disorders.
Office of Developmental Programs (ODP): The mission of the Office of Developmental Programs (ODP) is to support Pennsylvanians with developmental disabilities to achieve greater independence, choice and opportunity in their lives. The office seeks to continuously improve an effective system of accessible services and supports that are flexible, innovative and person-centered.
Oversight: The watchful care and reporting by a Supports Coordinator, Service Manager for unlicensed providers of service. This also includes ongoing review by ODP of County Programs/AE’s to ensure compliance with applicable policies, procedures and regulations.
Participant Directed Services: The individual receiving services has the number one role in determining the supports, outcomes, services, and decisions that affect him/her. A person living in their own home or the family’s home can choose to arrange and manage their own services and use Financial Management Services for payroll. They may also utilize a Supports Broker for assistance or designate a surrogate to act on their behalf.
Person Centered Supports: A type of service planning that allows the person to develop their own services and supports package to meet their needs, and select their own services and providers.
Personal Care Home of Facility: A licensed facility that provides meals, shelter and personal assistance or supervision for more than 24 consecutive hours for more than three adults who do not require nursing home care. Personal care homes will accept immobile adults who can be safely evacuated in an emergency.
Physical or Mental Impairment: Any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more, but not necessarily limited to, the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genitourinary; hemic and lymphatic; skin and endocrine; or any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities (Americans with Disabilities Act of 1990).
Provider Qualifications: The Office of Developmental Programs has a standardized statewide process to qualify waiver providers.
PUNS: Prioritization of Urgency of Need for Services: The process is an ongoing effort to identify and plan for the service needs of registrants. Each person's needs are categorized as Emergency (needed immediately), Critical (needed within 12 months) and Planning (needed within 5 years). The ID program uses the PUNS process to identify and rank needs as they arise, and to support service and budget requests to the Commonwealth of Pennsylvania.
Qualified Individual with a Disability: An individual with a disability who, with or without reasonable modification to rules, policies or practices, the removal of architectural, communication, or transportation barriers, or the provision of auxiliary aids and services, meets the essential eligibility requirements for the receipt of services or participation in programs or activities provided by a public entity (Americans with Disabilities Act of 1990).
Rate Setting: Rate setting is a standardized method for determining rates that providers can charge for providing waiver services. ODP has developed standards that waiver providers must use in determining the rates for waiver services.
Residential Supports: Offers supported living services to persons with various physical disabilities in many communities. All services are provided with a focus on individuals enhancing their capacities to become as self-reliant as possible.
Respite: A service that is provided on a short term basis because of the absence or need for relief of the primary caregivers.
Secondary Transition: The process of preparing students for life after they leave high school, including participation in post-secondary education or training, employment, and community living. These three areas are often referred to as “post-secondary outcomes” and are the driving force behind Individualized Education Programs (IEPs) written for students in high school.
Section 504: Section 504 is a part of the Rehabilitation Act of 1973 that prohibits discrimination based upon disability. Section 504 is an anti-discrimination, civil rights statute that requires the needs of students with disabilities to be met as adequately as the needs of the non-disabled are met.
Section 508 of the Rehabilitation Act of 1973: Legislation that requires that the federal government develop, procure, maintain, and use electronic and information technology that is accessible to people with disabilities.
Self Determination: A person’s right to determine the course of his/her own life and to make decisions affecting it, along with the responsibilities.
Sensory Impairment/ Sensory Processing Disorder: A disability that affects touch, sight and/or hearing.
Service Coordinator: Typically have social work or human services education and experience. The role of the service coordinator is to link elderly, people with disabilities and low-income families to supportive services and other community resources.
Service Definitions: Descriptions of each service covered under the Consolidated and Person/Family Directed Support Waivers (P/FDS) and through other mental retardation funding. Service definitions provide a standardized definition, unit and billing code for each service. Revisions to the service definitions took effect July 1, 2010.
Service Definition Units: Each waiver service is assigned a billing code number (entered into HCSIS) and amount of time a service must take place to equal one unit. (For example 24 hours of in-home Respite = 1 unit, 15 minutes out-of–home Respite = 1 unit, 15 minutes of 1 to 1 Habilitation = 1 unit). These units allow for standardized billing of Waiver services.
Service Preference: Individuals who are likely to meet the ICF/MR level of care criteria, or their representative, have the right to choose between institutional and home-and-community-based services.
Service Provider: An agency or individual employed to provide a service. In order to provide services through Medicaid Waivers, a provider must be willing and qualified to provide the service.
Service Review: Service Review is a formal process that takes place for Waiver recipients prior to the Fair Hearing process. Service Review is used if Waiver services have been denied, terminated, suspended or reduced. It is a protocol set forth by ODP to ensure consistent application of ODP policies. The service review process does not interfere with the individual/families due process rights.
Special Needs Trust: Special needs trusts are made specifically for the benefit of disabled or mentally ill beneficiaries. These beneficiaries lack the mental capacity to manage their own finances. The trust is created with the specific needs, lifestyle, and future of the beneficiary in mind. Often times these special needs trusts are used to ensure that the beneficiaries don't lose government benefits they are receiving. The trustees of special needs trusts can be family members or, if an appropriate and trustworthy family member is unavailable, a third party will be appointed by the court.
Specific Learning disability (SLD): A disorder of one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in difficulties listening, thinking, speaking, reading, writing, spelling, or doing mathematical calculations. Limitations may include hyperactivity, distractibility, emotional instability, visual and/or auditory perception difficulties, and/or motor limitations, depending on the type(s) of learning disability.
Speech Impairment: A problem in communication and related areas, such as oral motor function, ranging from simple sound substitutions to the inability to understand or use language or use the oral-motor mechanism for functional speech and feeding. Some causes of speech and language disorders include hearing loss; neurological disorders; brain injury; intellectual disability; drug abuse; physical impairments, such as cleft lip or palate and vocal abuse or misuse.
SSI Resource Limit: The amount of money or savings a person can have and still be eligible for services under the Waiver. The resource limit is $2,000 for a person and $3,000 for a couple.
Supports Broker: A person or agency that provides assistance needed for a person to plan, organize, and manage community resources. Some specific functions include: assistance in identifying and sustaining a personal support network of family, friends and associates for the person, assistance in arranging for and effectively managing community resources and informal supports, assistance at meetings to ensure the person’s access to quality community resources, and assistance in identifying and developing community resources to preserve the person’s well-being in the home and community. This waiver service is available to participants directing their own supports.
Supports Coordinator (SC): Known as Case Managers, Supports Coordinators help locate, coordinate and monitor services and supports for individuals.
Supports Intensity Scale (SIS) and PA Plus (PA+) : The Supports Intensity Scale (SIS) is an assessment tool that evaluates the practical support requirements of a person with a developmental disability. The SIS is a comprehensive and non-deficit based assessment that evaluates support needs throughout many life areas. PA Plus (PA+) - Additional questions that may be created by Pennsylvania as an addendum to the SIS. These additional questions address areas that the SIS itself did not address fully. ODP uses the SIS and PA+ as the standardized needs assessment for the Pennsylvania intellectual disability system (for Consolidated and P/FDS Waiver participants ages 16-72).
Supported Employment: Paid employment for persons who need intensive, ongoing support to perform in a work setting, which is not covered under the Rehabilitation Act of 1973 or the Individuals with Disabilities Education Act.
Surrogate: An individual selected by the person to represent him/her, or in the case of some persons with a cognitive disability, an individual acting on his/her behalf.
Technology Dependent: A person’s dependence on technology to replace a vital bodily function or to sustain life.
Targeted Service Management (TSM): Medical Assistance funded case or service management for persons with an intellectual disability.
Unserved People: People who do not receive any of the services they need.
Vendor Fiscal/Employer Agent (VF/EA): Individuals/families/representatives are able to 1) recruit and hire their qualified support staff, 2) determine staff work schedule(s), 3) determine the tasks to be performed and how and when they are to be performed, 4) orient and train their worker(s), 5) manage the day-to-day activities of their workers and 6) dismiss workers as necessary. (You are the employer, but the VF/EA is the “bookkeeper.”)
Vocational Rehabilitation Act of 1973: An act prohibiting discrimination on the basis of disability which applies to any program that receives federal financial assistance. Section 504 of the act is aimed at making educational programs and facilities accessible to all people with disabilities. Section 508 of the act requires that electronic office equipment purchased through federal procurement meet disability access guidelines.
Vocational Supports: A process which enables persons with functional, psychological, developmental, cognitive and emotional impairments or health disabilities to overcome barriers to accessing, maintaining or returning to employment or other useful occupation.
Waiver: Medicaid Waivers help provide services to people who would otherwise be in a nursing home or hospital to receive long-term care in the community. Although there are waivers for many conditions, our focus is towards waivers for people who have intellectual disabilities, developmental disabilities, and autism.
Waiver Capacity: The number of Waiver participants, approved by CMS, that can receive services through the Consolidated and Person/Family Directed Support (P/FDS) Waivers. Each Waiver has an approved number of slots that can be increased or decreased through a waiver amendment to CMS. Each Administrative Entity (AE) is notified of the number of Waiver participants to which it can provide administrative services through an annual financial commitment letter. The AE is responsible to ensure health and welfare needs of Waiver participants are fully met before enrolling new applicants (Olmstead Letter #4). If the AE indicates an inability to provide services to the number of waiver participants identified in their financial commitment letter, ODP reserves the right to adjust the assigned Waiver slots and related funding.