Module I: The Basics: UCEDDs and Consumer Advisory Committees Goal of Module: The goal of this module is to give new and existing CAC members an understanding of their role within the larger context of the UCEDD and the UCEDD network. Objectives of Module: At the completion of this module, participants will be able to: 1. Describe the history of the DD Act and the UCEDD program 2. Name the programs established by the DD Act 3. Describe the general purpose and formal and informal roles of a CAC Notes for Instructor: The topics in this module are arranged to begin with the “really big picture” (federal law). The next set of topics introduces the “big picture” (ADD and the DD Act). The final topics show the participant the “local picture” (the state DD Network, the UCEDD and the CAC). Information is presented in this manner to walk someone through the basic context of a UCEDD and the CAC to aid in their understanding of the role of a CAC and a CAC member. Module Outline Introduction (10 min.) Topic 1: The DD Act (5 min.) Topic 2: DD Act Programs (10 min.) Topic 3: The State DD Network (5 min.) Topic 4: The Consumer Advisory Committee (10 min.) Summary (<1 min.) Questions & Comments from Participants (10 min.) Criterion Check (5 min.) Preparations: Materials for Module I: Note paper Pens Copies of the PowerPoint slides Flip chart paper Criterion Checks (“How Did We Do?”) Administrative Details: Review content of module and make notes for yourself Review agenda and time line for module Discuss criterion checks, instructor, and module evaluations Hand Outs: Copies of the PowerPoint slides Criterion Checks UCEDD and other relevant brochures Begin Slides. Introduction Slides #1-2: Introductions: Explain that the purpose of Module I is to give new and existing CAC members an understanding of their role within the larger context of the UCEDD, the national network of UCEDDs and the Administration on Developmental Disabilities. Do introductions. Slide #3: Use of acronyms in this manual: Suggested script: The four most commonly used acronyms in this curriculum are: Consumer Advisory Committees (CAC) University Centers for Excellence in Developmental Disabilities (UCEDD) The Administration on Developmental Disabilities (ADD) The Developmental Disabilities Act (DD Act) Additional acronyms appear throughout this curriculum. A full list of acronyms can be found in the appendix under Alphabet Soup for Consumer Advisory Committees. Slide #4: Use of the word consumer: Suggested script: There is much discussion about the use of the word “consumer.” The term is used in this curriculum because the DD Act uses the phrase “Consumer Advisory Committee.” We have chosen to use this term to remain consistent with the law; however, you may choose to substitute a different term when using the curriculum. Slide #5: Topics of Presentation: Review the topics to be covered in Module. Explain that you are first going to go over the “really big picture” by defining an Act, federal law, and a federal agency. Topic 1: The DD Act Slide #6: The DD Act: Explain that you are first going to go over the “really big picture” by defining an Act, federal law, and a federal agency. Slide #7: What is an Act?: Ask a participant what an Act is. Answer: an Act is a law that authorizes programs Explain that authorizes means “give permission to.” Explain that laws include rules for the programs to follow. Use the diagram to show the process for passing laws: 1. Congress proposes a new bill or reauthorizes an existing Act (such as the DD Act in the diagram). 2. When Congress passes the bill, it is passed onto the President for his approval. 3. When the president signs the bill, and it becomes a law. Slide #8: What is an Act?: Explain that after the President signs a bill, it is given to a government agency which becomes responsible for administering the programs in the law. Slide #9: Visual of the DD Act Use the visual to review the process for passing a law using the DD Act as an example. Explain that the DD Act is an example of a federal law that authorizes certain programs, including the UCEDD program. The DD Act provides rules for UCEDDs. Identify the other programs that are in the DD Act and explain that you will go over them later The Administration on Developmental Disabilities is the government agency that works has responsibility for the DD Act. ADD assists the UCEDDs in understanding and following the rules in the DD Act. Explain that the purpose of the DD Act is to improve the lives of people with developmental disabilities Slide #10: The DD Act: A Brief History: Go over the important dates in the history of the DD Act. Explain that the term ‘mental retardation’ was commonly used back in 1950s and 1960s but today we use the term ‘intellectual or cognitive disabilities’. In 1955, Mental Retardation services became a priority in the Children’s Bureau. In 1962, the President’s Panel in Mental Retardation was created. In 1963, the first version of what is now called the DD Act created the entities we now know as UCEDDs. They were first called University Affiliated Facilities (UAFs). President Kennedy signed the bill into law 22 days before he was assassinated. In the original law, UCEDDs primarily served people with cognitive disabilities. UAFs were charged with expanding the number of professionals to address the needs of people with cognitive disabilities. Note to instructor: Mention that these slides include the history of UCEDDs in the context of the DD Act. Slide #11: The DD Act: A Brief History: Reauthorization means they reviewed how the Act’s programs were working and updated it to address the changing needs of people with disabilities in America. In the 1987 version of the DD Act, the name was changed from University Affiliated Facilities to University Affiliated Programs (UAPs). This was changed to show that the programs were not tied to buildings. UAPs were charged to provide advocacy, capacity building, and systemic change through interdisciplinary education, community services, and dissemination of information in the field of developmental disabilities. Slides # 12 - 14: The DD Act: A Brief History: Explain that the DD Act was most recently reauthorized in 2000. The next reauthorization will be in 2007. In the 2000 reauthorization of the DD Act, gave UCEDDs their current name of University Centers for Excellence in Developmental Disabilities (UCEDDs)--and here we are today! As authorized through the current version of the DD Act, UCEDDs are now a resource for Americans with a wide range of disabilities but retain a focus on developmental disabilities. Topic 2 The DD Act Programs Slide # 15: The DD Act Programs: Explain that you will be reviewing now the programs authorized by the DD Act. Slides #16-17: Themes of the DD Act: Explain that three themes are expressed in the DD Act: advocacy, capacity building, and systemic change. Advocacy can be for change (new programs) or to keep things the same (keeping a program from being cut). Capacity building can include training more people to work in the field, finding ways to serve more people, or teaching people how to help themselves. Systems change involves making changes on a large scale. To change a system, there must be a voice for change, a plan for making changes, some evidence that the plan might work, and a number of people or groups working together to make the change happen. Slide #18: A Closer Look at the DD Act Programs: Slides #19-20: UCEDDs: Explain that we are a University Centers for Excellence in Developmental Disabilities or UCEDD for short, which is one of grant programs authorized by the DD Act. A discretionary grant program is one where people submit applications to get money. A group of people review the application and score the application based on a set of evaluation criteria. The highest scoring applications are given the grant money. Identify the name of your UCEDD. Explain that there are 67 UCEDD grants that establish 68 UCEDDs with at least one in every US state and territory. UCEDDs work to accomplish a shared vision that foresees a nation in which all Americans, including Americans with disabilities, participate fully in their communities. Independence, productivity, and community inclusion are key components of this vision. Slide #21 UCEDDs: Explain that every UCEDD fulfills four Core Functions or main operations. Review the four core functions and explain that we will learn about the core functions in a later module. Through their unique make up UCEDDs: Serve a wide audience: people with disabilities, members of their families, state and local government agencies, and community providers. Have a wide variety of projects: provide training, technical assistance, service, research, and information sharing. Have played key roles in every major disability initiative over the past four decades. Many issues, such as early intervention, health care, community-based services, inclusive and meaningful education, transition from school to work, employment, housing, assistive technology and transportation have been directly benefited by the services, research and training provided by UCEDDs. Note to Instructor: The Core functions are introduced in detail in Module III, Orientation to the UCEDD. Slide #22: UCEDDs: Describe how the DD Act requires UCEDDs educate a variety of people, including state and national policymakers. Sldie #23: UCEDDs: State that the law requires UCEDDs to have an affiliation with a University. Affiliation means a formal agreement between the UCEDD and one (or more) Universities. You might explain your UCEDD’s affiliation with the University. This will be covered in more detail in Module III, Orientation to the UCEDD. Slide #24: Understanding the UCEDD: Explain that every state and territory has at least one UCEDD. Each has the same basic components but they are all unique. Suggested script for the ice cream metaphor: Ice cream may have different flavors, like rocky road or strawberry, but all ice cream has the same basic ingredients of milk and sugar. Like different types of ice cream, the UCEDDs have the same ingredients, but each has different flavors, like rocky road or strawberry. The milk and sugar are what the DD Act and ADD determines has to be included to make the basic structure of a UCEDD. The different flavors of UCEDDs depend on: Unique needs of the state (rural, urban, cultural complexion, etc.). Professional expertise and disciplines of UCEDD Director and senior staff. Research and programmatic strengths of UCEDD (what areas in the lives. of people with disabilities they focus on, like education, transportation, early childhood, aging, etc. Where in the University the UCEDD is affiliated. Number of UCEDDs in the state. Note to Instructor: Module III, Orientation to the UCEDD, is used as an in-depth introduction to the UCEDD. Module III covers in more detail the core functions of the UCEDD, what these look like at your UCEDD, the Areas of Emphasis, the 5 Year Plan, and how your UCEDD involves the CAC in the development of the 5 Year Plan. Slide #25: Core Funding and leveraging funds: Explain that as a discretionary grant, UCEDDs must apply for funding from ADD. The ADD money is referred to as “core funding” because it is used to help pay for the cost of operating the UCEDD. Therefore, it helps to pay for the core of the program. UCEDDs are supposed to leverage money to carry out training, research, and information sharing. Use a concrete example of what leveraging core dollars means in your UCEDD. A suggested metaphor: You are planning a trip. You do not have enough money to rent a vacation house for your stay. You have several friends with money that they have saved. Combining your resources with others’ makes the trip and rental of the vacation home possible. This is using your money to leverage other resources for a shared outcome. Slide #26: Projects of National Significance (PNS): Identify any PNS projects that your state may have and describe them. Explain that ADD decides what kinds of projects will be supported through PNS. Slides #27- 29:State Councils on Developmental Disabilities (DD Council): Identify the name/location of your DD Council in your state. Explain that a formula grant uses a formula to decide how much money a State gets. The Act authorizes a DD Council in each state. The DD Councils function to increase the independence, productivity, inclusion, and community integration of people with developmental disabilities. Councils engage in advocacy, build capacity and work to affect change and enhance systems to contribute to a coordinated, consumer-directed and family-centered array of community services and other individualized supports. Slides #30-32: Protection and Advocacy Programs (P&A): Identify the name/location of your P&A in your state. The act also authorizes a Protection and Advocacy (P&A) System in each state. One role of the P&A is to empower, protect, and advocate on behalf of persons with developmental disabilities. P&As enhance the quality of life of people with developmental disabilities by investigating incidents of abuse and neglect and discrimination based on disability. Topic 3 The State DD Network Slides #33-34: What is the State DD Network?: Introduce the idea of a state DD network (the other DD Act programs in your state). Explain that the ADD grant programs make up each state or territory’s DD Network: 1. P&A 2. DD Councils 3. UCEDDs The DD Act requires that these three entities collaborate to impact the lives of people with developmental disabilities and families in the State. Explain that each program brings their expertise to the collaboration. Explain how each program is a piece of the puzzle that works together to improve systems in your state that support people with disabilities. Explain that the visual shows how the Network collaborates. Sometimes it may be two programs working together. Other times it is all three. Slides #35-36: Our State’s DD Network: Use the next two slides to introduce participants to the P&A and DD Council in your State and to describe how you collaborate with them. If representatives from your DD Network are in attendance, have them give a brief introduction to what they do, where they are housed, etc. Note to Instructor: Prepare a fact sheet for this discussion on your state’s DD Network. Where are they located? Who are the Directors of your state’s DD Council and P&A? In what ways do you collaborate? Topic 4 The Consumer Advisory Committee Slide #37: The Consumer Advisory Committee (CAC) Introduction: Suggested script: Now we arrive at the part of the presentation that applies directly to you. We will now go into the relationship of the UCEDD and its CAC. The purpose of a UCEDD having a CAC is to ensure the perspective of people with disabilities and their families is included in the work of the UCEDD. We will now go into this in more detail. Slide #38: What does the DD Act say about the purpose of the CAC?: Explain that the DD Act has rules for what the CAC must do. Explain this is a basic definition of a CAC. The DD Act states that the CAC must consult with the Director of the Center regarding the development of the 5-year plan, and shall participate in an annual review of, and comment on, the progress of the Center in meeting the projected goals contained in the plan, and shall make recommendations to the Director of the Center regarding any proposed revisions of the plan that might be necessary. Slides #39-41: What does the DD Act say about the members of the CAC?: Go over the requirements in the DD Act for the make up of the CAC. Explain that meeting these requirements is a challenge for UCEDDs and members can help the UCEDD to meet these requirements. Other factors to take into account when thinking about your membership that are not required but are helpful in broadening the voice of the committee: Are there young leaders on your committee? Are there older individuals on your committee? Are there different kinds of family members on the committee? Note to Instructor: Module V has a section on recruitment and retention strategies and utilizing CAC members in the process. Slide #42: What does the DD Act say about how often the CAC should meet?: Tell the participants how often your CAC meets. Slide #43: What is the Basic Role of a CAC?: Use this slide to summarize what the CAC does. Explain that it a basic overview of the role of CAC members. Use the points on the slide to generate a discussion with your CAC members – do they have questions about any of these roles? Slide #44: Advisory Committees vs. Boards: Take this opportunity to explain the difference between advisory committees and boards. Boards are legally liable for their actions and direct the organization, whereas advisory committees give advice to the organization and have no legal responsibility or liability. UCEDDs have advisory committees. Slide #45: Boards and Councils P&As have boards of directors. DDCs have councils, whose members are appointed by the governor and have a responsibility to fulfill the terms of their appointment. Slide #46: What are benefits of the CAC-UCEDD relationship?: Talk about how the UCEDD-CAC relationship is mutually beneficial. Talk about ways this relationship has been beneficial for both parties in the past. Summary Questions & Comments from Participants Criterion Check It is suggested that participants complete a brief questionnaire regarding the topics discussed in this module. This is a way to make sure participants have learned the basic content and gives both the instructor and participant a chance to go over what might have been unclear or over-looked. Emphasize that these surveys are to help the participants and the instructors determine if they have learned new information from this session and to assist the instructors in improving their presentations and curriculum. You can conduct the criterion check in a way that works best with your participants. Some suggested uses: Make a game out of it (like a quiz show). Ask for each participant to volunteer an answer for each question then write the answers on a flip chart and go over what people feel they have not fully understood. Have people work in small groups to answer the questions. Make sure each participant has the tools to participate. For example, someone might need a large print version or the questions read out loud to them. Module I Criterion Check “How Did We Do?” Topics: The DD Act DD Act Programs The State DD Network The Consumer Advisory Committee 1. Name the programs established by the DD Act: 2. Describe 1-2 ways the UCEDD works in the state: 3. Describe the general purpose of a CAC: 4. Describe 1-2 formal and informal roles of a CAC: Consumer Advisory Orientation Curriculum Instructor’s Manual Consumer Advisory Committee Orientation Curriculum Instructor’s Manual