A Glossary of Terms relating to intellectual and developmental disabilities and autism is presented as a reference point for individuals and families who are interacting directly with the intellectual and developmental disabilities system. It is included in the manual: Understanding the Office of Developmental Programs in Pennsylvania: Mental Retardation and Autism Services (copyright © 2010 Vision for Equality, Inc.).  This collaborative resource was developed by the Disability Rights Network of Pennsylvania, Vision for Equality, Inc., the Pennsylvania Waiting List Campaign and the Pennsylvania Training Partnership for People with Disabilities and Families.  

Please visit the Pennsylvania Training Partnership for People with Disabilities and Families site for a comprehensive overview of the processes, resources and supports that are available in the Commonwealth of Pennsylvania.

Glossary A - E

Abbreviated ISP
Shortened version of the ISP used for people who receive under $2,000 in non-waiver services. The minimum screens must be completed: Demographics, Outcome Summary, Outcome Actions, Services and Supports Directory (Provider, Vendor, and/or FMS) and Service details.

Medicaid recipients present this card to doctors and health care professionals to verify their eligibility for medical services covered by Medicaid.

Administrative Entity (AE)
An AE is typically a County MH/MR Program that holds an agreement with the Department of Public Welfare to perform waiver-related activities and functions delegated by the Department. The role of the AE is to implement the waiver program(s) and other duties set forth in the Operating Agreement, adhere to all ODP policies and procedures and Departmental regulations and decisions, and provide fiscal and administrative services. An AE can also be a non-governmental entity that holds a contract with the Department to perform the waiver-related activities and functions.

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 Agencies on Aging (AAA)
There are 52 Area Agencies 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.

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 consumerís right to make decisions regarding the level and inten≠sity of care; provide hands-on personal care services; and are available at any time depending on the consumerís needs.

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 ODPís service review determination to inform the fair hearing proceedings.

Case Management
See Supports 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 Childrenís Health Insurance programs.

Community Residential Facility
A licensed personal care home, domiciliary care home or community home for persons with mental retardation, or other related conditions.

Community Resources
Educational, recreational, civic, and other public services, buildings and agencies avail≠able 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.

Glossary F - J

A building where programs or services take place.

Fair Hearing and Appeal
The right to have a hearing before the Department of Public Welfare, Bureau of Hearing and Appeals when the individual is:

  1. Not offered the choice between an ICF/MR and waiver services,
  2. Denied the service option of choice,
  3. Denied the choice of a willing, qualified waiver provider, and
  4. Home- and community-based services received are reduced, termi≠nated, or suspended without consent.

Family Driven Support Services (FDSS)
State-funded services provided to individuals and families. FDSS funds are limited.

Federal Benefit Rate
The portion of the monthly Supplemental Security Income (SSI) funded by the Social Security Administration.

Federal Financial Participation (FFP)
Federal funds authorized to states to assist in payment for services.

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 individualís support providers, take care of paying employment taxes and filing for workers compensation insurance on behalf of a person. Pennsylvania has two FMS models:

  • 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. (Youíre the employer, but the VF/EA is the ďbookkeeper.Ē)
  • 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)í work schedule, 4) determine the tasks to be performed and how they are performed, 5) manage the day to day activities of that personís 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.)

Financial Eligibility
Income and resource limits that have been established in order for people to qualify for Medicaid Waiver services and other MA services.

A court-appointed person who has the legal responsibility for the care and management of an estate, minor, or person declared incapacitated.

Health Care Professionals
Licensed or certified provider of health care services, including physicians, psychologists, therapists, and nurses.

Any place a person chooses to live.

Home and Community Based Services
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.

Programs that provide for the physical and emotional needs of people with terminal illnesses.

Individual Support Plan (ISP)
An integrated planning document reflecting ďPerson-Centered Planning,Ē 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 participantís needs.

Informal Support
People who provide supports and are not paid to do so.

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 develop≠mental 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 mental retardation.

Intermediate Care Facility for Persons with Mental Retardation (ICF/MR)
A licensed facility that provides care designed to meet the needs of persons with mental retardation who meet the ICF/MR level of care criteria and who require special health and rehabilitation services.

Glossary K - O

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.

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 (MA) Provider Agreement
All providers, with the exception of unlicensed individuals providing services through a Vendor Fiscal/Employer Agent Financial Management Services, must have a signed Medical Assistance Provider Agreement with the Department of Public Welfare (DPW) in order to receive waiver funding for payment of services. (Unlicensed individuals must have a signed agreement with a VF/EA FMS under contract with the Department in order to receive waiver funding for payment of services). The agreement covers things like the provider agrees to follow all waiver rules and regulations, not accept additional payment from recipients and to protect confidentiality.

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 MA program.

Medically Needy
Eligibility for Medicaid under specific financial requirements that includes income limits after incurred medical expenses have been deducted from the income.

ODP Quality Leadership Board
An Office of Developmental Programs internal group of senior managers who oversee ODP Quality Management.

Operating Agreement
Contract between the Department of Public Welfare and Administrative Entities (AEs) for functions related to the implementation of the Consolidated and Person/Family Directed Support (P/FDS) Waivers. The agreement reinforces the authority of ODP, and outlines the roles and responsibilities of both the Administrative Entities and ODP. The new agreement also includes steps ODP can take if an Administrative Entity is not fulfilling the contract.

The watchful care and reporting by a Supports Coordinator, Service Manager, or QMRP for unlicensed providers of service. This also includes ongoing review by ODP of County Programs/AEís to ensure compliance with applicable policies, procedures, and regulations.

Glossary P - T

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 ser≠vices and providers.

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 his/her own home or  familyís home can choose to arrange and manage his/her own services and use Financial Management Services for payroll. He/she may also utilize a Supports Broker for assistance or designate a surrogate to act on their behalf.

Personal Care Home
A licensed facility that provides meals, shelter, and personal assistance or super≠vision 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.

Provider Dispute Resolution
A formal process that providers can use to appeal decisions by the Administrative Entity (AE). Circumstances where the provider could use the formal appeal process are:

  • The AE has imposed additional contractual requirements.
  • The AE has imposed restrictions or suspension upon the provider.
  • The AE has initiated a termination or disqualification action.
  • There are violations of 55 Pa. Code 4300 that limit the providerís ability to provide waiver services.
  • The AE has not complied with ODPís rate setting methodology.

Provider Qualifications
The Office of Developmental Programs has a standardized statewide process to qualify waiver providers.

Qualified Mental Retardation Professional (QMRP)

The QMRP determines whether a person meets ICF/MR level of care criteria. A QMRP may be any person who has at least one year of experience working with persons with mental retardation or other developmental disabilities and is one of the following: 1) A doctor of medicine or osteopathy, 2) A registered nurse, 3) An individual who holds at least a bachelors degree in a specific professional category.

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.

Regional Program Managers (RPM)
Oversee regional operations for the Office of Developmental Programs that includes fiscal and program planning, management and oversight of community mental retardation programs.

Regional Reviewers
Specific staff members at each ODP Regional Office who are assigned as part of the service review process to review all information regarding an appeal that meets the criteria for a service review. They are the first reviewers in the Service Review process. After reviewing all the information regarding an appeal, the reviewer makes a recommendation to the Regional Program Manager.

A service that is provided on a short term basis because of the absence or need for relief of the primary caregivers.

Self Determination
A personís right to determine the course of his/her own life and to make decisions affecting it, along with the responsibilities.

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-ofĖhome 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.

Services and Support Directory (SSD)
A web-based service directory that contains information about providers of services in Pennsylvania.

SSI Resource Limit
The amount of money or savings a person can have and still be eligible for ser≠vices under the Waiver. The resource limit is $2,000 for a person and $3,000 for a couple.

Supports Broker
An individual 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 personís access to quality community resources, and assistance in identifying and developing community resources to preserve the personís well-being in the home and community. This waiver service is available to participants directing their own supports.

Supports Coordinator
Formerly 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 mental retardation 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.

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 personís 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 mental retardation.

Glossary U - Z

Underserved people
People who receive some services, but not all of the services they need.

Unserved people
People who do not receive any of the services they need.

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.

Waiver Capacity Commitment
The number of participants the Administrative Entity may enroll in a specified Waiver at any given point in time during a fiscal year, as approved by the Department.

Waiver Capacity Commitment Letter
A notification that designates the Departmentís current approved maximum number of participants within the jurisdiction of the Administrative Entity that may be enrolled in each Waiver at any given point in time. There are two numbers designated in the Waiver Capacity Commitment Letter reflecting the number of Participants that may be enrolled in the Consolidated Waiver and in the Person/Family Directed Support Waiver.