Have you ever wondered what some of the terms thrown around on this web site or by your Personal Agent or Support Provider mean? Look no further!
Additionally, you may find useful this list of Frequently Asked Questions about Support Services for Adults and this list of acronyms used in Special Education (among other things).
Activities of Daily Living (ADL, ADLs)
Activities of daily living (ADLs) is a term used in healthcare to refer to daily self-care or personal care activities within an individual’s place of residence, in community environments, or both. ADLs are the things we normally do, such as feeding ourselves, bathing, dressing, grooming, work, homemaking, etc.
Health professionals routinely refer to the ability or inability to perform ADLs as a measurement of the functional status of a person, particularly in regards to people with disabilities and the elderly.
In the Brokerage system, if a customer has ADL or personal care needs, they may be met through Community Living Support services.
See also: Oregon DHS’ Aging and People with Disabilities page on Activities of Daily Living (ADLs).
Benefit Level
Brokerage Support Services are funded using both State and Federal (Medicaid) funds. At the time of referral, the services coordinator and personal agent will determine the financial benefit a person is eligible for to help purchase needed services and supports.
Individuals may be eligible for one of the following types of benefit levels:
Basic Benefit Level: Brokerage customers who meet a certain level of care need and who receive Medicaid based on income (100 to 300% of SSI) and resources (below $2,000) have access to a standard “base” individual budget.
Supplement to Benefit Level: Brokerage customers who have extraordinary care needs or circumstances are eligible for individual budgets at higher levels. This budget level is also called “base plus.”
For additional information, please see DHS’s page on Benefit Levels.
Brokerage
The primary job of a Support Service Brokerage is to help an individual plan, arrange, and monitor supports needed to stay at home and participate in their community. Brokerage organizations employ staff (Personal Agents) who help enrolled individuals develop an individual support plan, obtain available resources necessary to implement the plan, select people or organizations to provide specific support services, and monitor and evaluate the outcomes of delivered services.
Additional information can be found at Oregon DHS’s page on Brokerage Support Services.
Case Manager (County Case Manager, Service Coordinator)
Brokerages work alongside the Community Developmental Disability Programs (CDDPs). CDDP Case Managers are also known as Service Coordinators. Individuals receiving services through the county, who are not yet enrolled in or are ineligible for Brokerage services receive case management services from their county Service Coordinator. The Brokerage equivalent of a Service Coordinator is known as a Personal Agent.
For those individuals who are interested in a referral to a Brokerage the Services Coordinator first must evaluate whether the individual is eligible to receive Brokerage services.
One of the County Developmental Disability Programs core responsibilities is to investigate allegations of abuse reported for any adult with a developmental disability. A Services Coordinator assesses the need for protective services and coordinates getting the services into place.
At times, individuals may go through a period of crisis, during which additional resources are needed to resolve the presenting problems. Services Coordinators serve as the referral and liaison to crisis services, which are offered either through the CDDP or through Regional Partners who provide crisis/diversion services. The Services Coordinator is responsible for determining whether the individual is eligible for crisis services and whether the risk factors rise to the level of need as specified in the Oregon Administrative Rules (OARs).
Additional duties and responsibilities are enumerated at Oregon DHS’s page on Service Coordination.
Community Developmental Disability Program (CDDP)
Each Community Developmental Disabilities Program (CDDP) is required to provide assistance to residents of their service area in applying for developmental disability services. The CDDP of residency of an individual applying for services must make the determination of the individual’s eligibility to receive developmental disability services.
That task is generally carried out by a county Case Manager (Service Coordinator). A Services Coordinator does not diagnose an individual as having a developmental disability, but does determine through review of evaluative information whether an individual meets the eligibility criteria. Once an application for services has been submitted to the CDDP, the process of determining eligibility must happen within ten days.
For additional general information about CDDPs, see Oregon DHS’s page on Community Developmental Disabilities Program Services.
Crisis Services
Many situations may be called ‘a crisis’ but not all will meet the specific definition that qualifies for use of Crisis Services and funds as defined in the Crisis / Diversion OAR 411-320-0160.
Crisis services and nursing facility services are specialized supports available only to adults with developmental disabilities who meet strict eligibility criteria. Crisis services are developed in response to specific issue and may be short-term or long-term. Eligibility for Crisis services is limited to adults who are at imminent risk for civil commitment to an institution for persons with mental retardation (ICF/MR) under Oregon Law or children at risk of out-of-home placement.
Services may be provided in the form of placement at a crisis bed, funding for additional supports in the existing service, training, technical assistance or other interventions.
For additional information, please see Oregon DHS’s page on Other Adult Support Services, Multnomah County’s page on Crisis & Long-Term Services (good run-down of risk factors for commitment and an elaboration of available Crisis or Comprehensive Services) and Oregon DHS’s document on Accessing Crisis Services While Enrolled in Support Services.
Dues (Union Dues)
In June 2011, the Oregon Employment Relations Board announced that Personal Support Workers voted 1,873 to 772 in favor of representation by SEIU Local 503. This means that all Support Providers in Oregon classed as “Personal Support Workers” under House Bill 3618 (including PSWs who are not members of the union) are now represented by SEIU Local 503.
From the SEIU Local 503 web site:
It takes money to run an organization, like a church, a club, or a union. Union dues pay for contract negotiation expenses, office and support services, legal services, union newsletters and other communications, training for stewards and members, and organizing.
All non-management, non-confidential, non-elected employees have the choice to become union members once a majority of employees at your employer or workgroup have voted to form a union. However, unions are legally obligated to represent everyone within the bargaining unit, whether or not they are union members. Non-members are covered by the contract, may file grievances, are represented by the union, and are even represented by a union attorney in arbitration hearings.
For this reason, in most unions, those who choose not to become union members have to pay a “fair share” fee — their fair share of the cost of bargaining and administering the contract that protects everyone.
The dues rate is set by a membership vote. In SEIU/OPEU the dues rate for this local is 1.7% of your gross pay plus $2.75 per month.
If any Personal Support Workers have comments, questions or concerns, they may directly contact SEIU local 503.
Eligibility
A developmental disability is a disability diagnosed as a mental or physical condition or a combination of mental and physical conditions resulting in significant impairments to daily functioning. The most common developmental disabilities include: mental retardation, Down syndrome, autism, cerebral palsy, epilepsy, and fetal alcohol effect or fetal alcohol syndrome.
Each Community Developmental Disability Program (CDDP) is responsible for determining eligibility. The eligibility worker in your county will assist you through the eligibility process and help you obtain the necessary documents that will be needed to see if you meet the criteria for eligibility to receive county or Brokerage services.
For additional information please see Oregon DHS’s page on Developmental Disabilities Eligibility.
Future Planning
“What will happen after we’re gone?” is a question that parents of a son or daughter with a cognitive, intellectual or developmental disability are concerned about, particularly when the family member is still living with them. Parents may wonder where their son or daughter will live and how they will be supported in their daily lives, when they are no longer able to provide care. The concern increases as the parents age and may face declining health.
Future planning involves more than just financial and legal planning. It focuses on all major areas of the person’s life such as living arrangements, educational programs, employment or other meaningful daily activities, leisure time activities and personal needs.
The individual with a disability should share in developing the plan. The plan should reflect what that person would like for his or her life.
It’s never too early to start planning for the future…
For additional information on future planning, you may wish to read A Family Handbook on Future Planning.
Goal Survey
A goal survey is a document written or updated annually by a Personal Agent (PA) prior to writing an Individual Support Plan (ISP). This document uses information from multiple sources to document information about health and safety concerns, met and unmet support needs as well as areas where an individual is “independent” (self-sufficient), which needs will be permanent ongoing needs vs. which may be areas for skills training toward self-sufficiency. A good goal survey will give the reader an accurate picture of who the individual is, what the disability-related needs are, and how they are being addressed. Once the goal survey has been completed, the PA can proceed to write the annual ISP based upon the information contained in therein.
Goal surveys are an integral part of The Goal Loop (PowerPoint available here).
Incident Report
An incident report is “…a written report of any injury, accident, acts of physical aggression or unusual incident involving an individual.” In some circumstances, an incident report may reflect a serious event. Personal Agents and Service Coordinators review the action taken following such reported incidents and assure through monitoring that the individual’s health, safety and rights are protected.
Individual Education Program (IEP)
An IEP is a written statement of an educational program which is developed, reviewed, revised and implemented for a school-aged child with a disability by the school’s special education program, particularly as relates to the High School Transition program.
The Individualized Education Program (IEP) is the document used to facilitate an individualized planning process during the transition years (14-21). The IEP must include a youth’s present level of educational performance, his or her transition service needs, and measurable annual goals. In addition, the IEP must include any interagency responsibilities, accommodations or modifications, and a statement of the special education and related services to be provided to the youth for the youth to be involved and progress in the general curriculum.
The IEP team typically may consist of a mix of the individual, their parent(s), regular and special education teachers, other support workers as appropriate and the Personal Agent of the individual if they are enrolled in Brokerage services.
For additional information please see the applicable OARs, Policies and Procedures for Special Education, the IEP & Transition Planning page (provided by NCSET) and the Student’s Guide to the IEP (provided by NICHCY via NYLN).
Individual Support Plan (ISP)
All individuals receiving funded services are required to have an individualized plan of care or individual support plan (ISP). Individual Support Plans provide the opportunity to enhance the quality of life of each person by outlining his or her individualized services and supports.
The ISP is a standardized tool that is used for recording the process and outcomes of person centered planning in support services. The ISP includes the written details of the supports, activities, and resources required for the individual to achieve personal goals. The Individual Support Plan is developed to articulate decisions and agreements made during a person-centered process of planning and information gathering. The general welfare and personal preferences of the individual are the key consideration in the development of all such care plans.
The individual and their ISP team are responsible for developing the individual plan of support. ISP team is composed of people who care about and know the individual. The team may also ask specialists, consultants or specific provider staff to contribute to the plan by completing evaluations, or by observing and collecting information that is basic to the preparation of the plan. The ISP team translates this information into goals and objectives, which are then contained within the written plan. The plan results in outcomes that maintain or change services or supports to reflect what is most important to and most important for the individual in their daily life.
For more information, see DHS’s page on Individual Service Planning. ISPs are an integral part of The Goal Loop (PowerPoint available here).
Mandatory Abuse Reporter / Reporting
To prevent abuse and safeguard the welfare of adults with developmental disabilities, the Oregon legislature determined it was necessary and in the public interest to require mandatory abuse reporting for certain private and public officials.
A mandatory reporter (all SDRI staff, county case managers, Personal Support Workers / Domestic Employees and any other support providers contracted to serve Brokerage customers) must report to the community program or a local law enforcement agency all incidents where the reporter has reasonable cause to believe abuse may have occurred or is presently occurring.
If you believe abuse is occurring, immediately contact your county developmental disability program (typically Washington county) and also your local law enforcement agency if you believe a crime is being committed or has been committed.
You may also report abuse to Department of Human Services (DHS) by calling the Office of Investigations and Training (OIT) at 503-945-9495 or toll free at 1-866-406-4287.
For additional information regarding abuse and reporting, please see Oregon DHS’s page on Abuse & Neglect. You may also wish to view this Training for Families Receiving Services (requires the Adobe Flash plugin).
Providers of services to Brokerage customers should read this Mandatory Abuse Reporting Notice (including filling out and returning the acknowledgment page) and have a copy of the Mandatory Abuse Reporting Card for easy reference. You can call us and we will send you a wallet version of this card, or you can download and fold the state’s version here.
Natural Supports (Natural Support System)
Natural Supports or Natural Support System means the unpaid resources available to an individual from their relatives, friends, significant others, neighbors, roommates, employers and the community. Services provided by natural supports are resources that are not paid for by the Department of Human Services (DHS).
In terms of cost effectiveness, DHS prefers to use the least costly alternatives while providing choices that adequately meet an individual’s service needs. Support services funds are not intended to replace the resources available to an individual from their natural support system. Support services funds may be authorized only when the natural support system is unavailable, insufficient, or inadequate to meet the needs of the individual.
For additional information, you may refer to the relevant Oregon Administrative Rules (OARs).
Person-Centered Plan (PCP)
The term, Person Centered Planning, refers to a number of approaches that assist you and your family to think about what is important in all the different parts of your life. Person Centered Planning is a process that assists people with disabilities and their families to plan for the future. Through structured exercises focusing on the Person’s strengths and preferences, a snapshot of the Person and possibilities for the future are created. Approaches can range from informal conversations to facilitated meetings using a PATH, MAP, ELP or Personal Futures Planning process.
After meeting with you and other people you choose to be involved in the process (such as your family and friends who know you best), your Personal Agent (PA) will use the information gathered to help you develop your Individual Support Plan (ISP), which will reflect what you want to do in your life. Your education, employment, home life, social and leisure activities, transportation needs, medical and health issues, communication, finances, and long term goals are some of the many topics covered in an ISP.
For a brief overview of what the Person-Centered Planning process look like, see: Person Centered Planning — Creating Your Future.
Personal Agent (PA)
A Personal Agent is someone employed by SDRI to help: develop an Individual Support Plan (ISP) for you; obtain available resources necessary to implement your plan; assist you in selecting people or organizations to provide specific support services; and monitor and evaluate the outcomes of services delivered to you. Your PA may advocate for you or help you advocate for yourself in many situations in your life.
Personal Support Worker (PSW)
During the February 2010 special session of the Oregon Legislature, House Bill 3618 was passed. Among other things, HB 3618 defined several classes of Support Providers, including “Home Care Workers” and “Personal Support Workers.” According to the text of the bill, “Personal Support Workers” are defined thus:
(f) “Personal support worker” means a person:
(A) Who is hired by a person with a developmental disability or mental illness or a parent or guardian of a person with a developmental disability or mental illness;
(B) Who receives moneys from the department for the purpose of providing care to the person with a developmental disability or mental illness;
(C) Whose compensation is provided in whole or in part through the department, a support
services brokerage or other public agency; and
(D) Who provides home care services in the home or community.
Typically, individuals providing services qualifying for the class of Personal Support Worker tend to be Domestic Employees directly employed by a customer or their family. However, based upon the wording of HB 3618, DHS has determined that some services provided by Independent Contractors qualify them as Personal Support Workers while providing those services (e.g., ongoing community inclusion and living support [not time-limited skills training], respite, homemaker services, chore services and ongoing supported employment [not time-limited job coaching or job development]).
In addition to defining the aforementioned classes of Support Providers, additional rights and responsibilities were implemented. Those include but are not limited to: eligibility for workers compensation administered by the Home Care Commission (as of January 2011), access to job-related training through the Home Care Commission and a requirement “…that the names and addresses of Personal Support Workers be made available to individuals that may request it, subject to public records laws. Such requests may come from entities interested in organizing workers for the purpose of collective bargaining. So as a result of this new law, you may be contacted for that specific purpose.”
See DHS policy transmittal SPD-AR-10-053, the full text of House Bill 3618 (specifically SECTION 4 (f) (A-D)) and ORS 410.600(10)(a-d).
Progress Notes
Progress notes are a way of documenting customer progress toward the goals outlined in an annual Individual Support Plan (ISP). All contracted support providers (Independent Contractors, Agencies and some General Businesses) are required to submit progress notes with their invoices. Domestic Employees are not generally required to submit progress notes, however under some circumstances SDRI may request that progress notes be submitted by Domestic Employees as well.
Good progress notes should include at least the following information: the goal as specified in the ISP and on the contract or job description; a brief daily summary of activities; details of all disability-related supports furnished by the service provider to enable the customer to fully participate in the activities; a summary of both challenges and progress in achieving the goal; customer satisfaction with progress toward the goal.
Sanctions
Support services for adults are funded through Medicaid and administered through the Oregon Department of Human Services. Brokerages are tasked with accountable use of public funds and providing support services safely to our customers.
Prior to providing support services to our customers, potential providers must complete a qualification process. In this process, they agree to be accountable for the use of public funds and to provide services safely to our customers.
Under specific circumstances, a Brokerage may impose sanctions and disqualify a provider from providing further services under Oregon Administrative Rule (OAR) 411-340-0130(9). A sanction may be imposed on a provider when the Brokerage determines that, at some point after the provider’s initial qualification and authorization to provide supports purchased with support services funds, some circumstance has changed that would have precluded initial qualification of the provider.
Examples of such disqualifying events include but are not limited to: conviction of any crime that would have resulted in an unacceptable criminal records check; surrendered his or her professional license or had his or her professional license suspended or revoked; failed to safely and adequately provide the authorized services; failed to safely and adequately provide the authorized services; a founded report of child abuse or other substantiated abuse; billed excessive or fraudulent charges or been convicted of fraud; made false statement concerning conviction of crime or substantiation of abuse; falsified required documentation; suspended or terminated as a provider by another division or agency within DHS or Oregon Health Authority.
Sanctions may include: provider may not be allowed to provide services for a specified length of time or until specified conditions for reinstatement are met and approved by the Brokerage or the Department, as applicable; the brokerage may withhold payments to the provider; the provider may no longer be paid with support services funds.
A provider may appeal a sanction in writing within 30 days of the date the sanction letter was mailed to the provider by requesting an administrative review by the Department of Human Services’ Administrator.
For additional information on provider sanctions, please see OAR 411-340-0130(9).
Self-Advocacy
People have the right to speak up for themselves. People with disabilities have opinions that should be heard, even if they cannot always speak in ways that most people understand.
Self-advocacy is a political movement started by men and women with disabilities to make changes in laws, policies, and attitudes needed to guarantee all people their human rights.
Self-advocacy is about people with disabilities learning to speak up for themselves and speak out to teach others about their rights. Self-advocacy is also about speaking up for others (whether they have the same problem or a different one), to give them a voice. It is about working together to make changes in one’s own life (and sometimes the lives of others) and changes to the way that disability services are provided.
Self-advocacy starts with is learning about yourself and about your rights. Self-advocacy may involve learning to be a stronger person or to speak up even when it’s scary.
If you are interested in self-advocacy, you may wish to consider participation in organizations like SAAL, SABE or the Washington County Self-Advocates.
Self-Determination
Self-determination is about being empowered to speak out for one’s rights and to achieve one’s own goals and dreams. In the case of self-determination for individuals with developmental disabilities it also involves having control over the money and services that one receives.
True self-determination includes being a valued and contributing member of one’s community; working and being paid competitively at a real job; having real choice and control over one’s own life, goals and finances; living in one’s own home or the home of one’s own choosing.
Principles of self-determination include: Freedom, Authority, Responsibility and Support.
See also SDRI’s Philosophy statement and DHS’s thoughts on Self-Determination.
Self-Directed Supports (SDS)
A corollary to the idea of Self-Determination (individual freedom, authority, responsibility and support where necessary) is the idea of Self-Directed Supports.
Historically, people with developmental disabilities have not always had control — that is, substantial decision-making authority — over the services and supports provided to them.
Self-direction is based on recognition of the idea that the people being served are in the best position to know what they want and need in order to connect to other people and resources in their community. Self-direction is about choosing to be engaged in your life. People who have not before had the opportunity to make choices can select services and supports to help them connect to their community and enjoy greater quality of life. Self-direction puts the individual at the beginning, middle AND end of the service delivery process, so that they are both the authors of and an active agent in a plan for their future.
To understand more about Self-Direction and how some states have chosen to implement it, see the research paper Understanding Self-Direction for People with Developmental Disabilities compiled by the Campaign for Real Choice in Illinois with support from the Illinois Self-Advocacy Alliance.
Service Employees International Union (SEIU, SEIU Local 503)
SEIU is an international public services, property services and healthcare workers union. SEIU has more than 150 local union affiliates. Local union members bargain with employers to produce collective bargaining agreements that set workplace rules, benefits and wages.
In June 2011, the Oregon Employment Relations Board announced that Personal Support Workers voted 1,873 to 772 in favor of representation by SEIU Local 503. This means that all Support Providers in Oregon classed as “Personal Support Workers” under House Bill 3618 (including PSWs who are not members of the union) are now represented by SEIU Local 503.
If any Personal Support Workers have comments, questions or concerns, they may directly contact SEIU local 503.
For additional information and news, you may visit the web sites of SEIU and SEIU Local 503.
The Staley Agreement
“In January 2000, five individuals with developmental disabilities and their families filed a lawsuit against the state of Oregon. They claimed they were unfairly being denied access to services they were entitled to receive. Staley v. Kitzhaber became a class action representing over 3,000 Oregonians with developmental disabilities. A settlement was reached in September 2000 and the Oregon Legislature made available $37 million general fund dollars for the first biennium of funding. Implementation of the Staley v. Kitzhaber settlement agreement began July 1, 2001.”
–The Arc of Oregon’s Staley home page.
Support Provider (Provider)
A general, all-encompassing term for persons or businesses providing products or services in support of Brokerage customers. Support Providers fall into several sub-categories: Domestic Employees, Independent Contractors, Agencies and General Businesses.
See SDRI’s page on Provider Types for additional information.
Transition Services (High School Transition)
Transition Services is a term used in the Individuals with Disabilities Education Act (IDEA) that defines a coordinated set of activities that may address, among others, the assessment, planning process, and educational and community experiences for youth with disabilities as they turn 14. The intent of transition is to create opportunities for youth with disabilities that result in positive adult outcomes.
Transition is about planning for life! It includes planning for academic and non-academic courses and learning experiences, employment and related training opportunities, community living, and leisure activities. A goal of transition is to help youth understand their disability and choices to determine their future. One way transition does this is by connecting youth to teachers and other caring adults, support services, and experiences that build skills and help them reach their goals. Transition is based on family values, priorities, and culture, and is focused on an individual youth’s interests, preferences, and needs.
For additional information on Transition and Individual Education Programs, see the Oregon Department of Education’s page on Secondary Transition for Students with Disabilities and NCSET‘s page on IEP & Transition Planning.
Vocational Rehabilitation (VR, OVRS, Voc Rehab, Office of Vocational Rehabilitation Services)
Office of Vocational Rehabilitation Services (OVRS) is a statewide resource for people with disabilities and is part of the Department of Human Services. We assist individuals with disabilities in getting and keeping a job. OVRS is a state and federally sponsored program. OVRS works in partnership with the community and businesses to develop employment opportunities for people with disabilities. If you have a disability that makes it difficult for you to get or keep a job, and you want to work, the Office of Vocational Rehabilitation Services (OVRS) can help.
For additional information see OVRS’s page on Services for Individuals with Disabilities.