Customizing the Consumer Advisory Committee (CAC) Orientation Curriculum: Perspectives from the AUCD Network The CAC Orientation curriculum was funded in part by the Administration on Developmental Disabilities under Contract # to the Association of University Centers on Disabilities. The content of this material does not necessarily reflect the views and policies of the Administration on Developmental Disabilities. No official support or endorsement by the Administration on Developmental Disabilities is intended nor should be inferred. AUCD Annual Meeting 2007

Background of Curriculum ADD wanted a resource to assist UCEDDs to orient new and existing Consumer Advisory Committee members AUCD Policy fellowship project – Consulted and worked with ADD, COCA, UCEDD Directors Tested at last Annual Meeting Reviewed by ADD, SABE and released on AUCD website in June, 2007 AUCD Annual Meeting 2007

What processes were used to develop & validate the materials? Formed an Advisory Workgroup Reviewed existing materials: The 1995 AAUAP Consumer Council Orientation Manual CAC orientation resources currently in use across the UCEDD network Gathered additional information: COCA Advisory Workgroup 2006 Directors Retreat attendees Workshop attendees at the 2006 SABE Conference Identified/validated promising practices with Advisory Workgroup Obtained Advisory Workgroup feedback on materials developed for project Conducted focus groups on the materials with two CACs Conducted evaluative workshop at AUCD Annual Meeting Incorporated feedback from focus groups and workshop Provided materials to ADD Incorporated feedback from ADD Submitted materials to additional, outside reviewers AUCD Annual Meeting 2007

How is the CAC Orientation Curriculum structured? 5 modules, each containing slides and an instructor’s manual Appendices (readings, handouts, further resources) Designed to be customized by individual UCEDDs – Pick and choose which modules or elements of modules to use – Add additional material into the slides, manual, or handouts AUCD Annual Meeting 2007

Overview of Each Module AUCD Annual Meeting 2007

Module I: The Basics: UCEDDs and the CAC 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. Content Covered: – The DD Act – DD Act Programs – The State DD Network – The CAC AUCD Annual Meeting 2007

Module II: How are UCEDDs Connected? The goal of this module is to give CAC members an understanding of how UCEDDs are connected at the national level. Content Covered: – Administration on Developmental Disabilities (ADD) – Association of University Centers on Disabilities (AUCD) – AUCD’s Council on Community Advocacy (COCA) AUCD Annual Meeting 2007

Module III: Orientation to the UCEDD The goal of this module is to give new and existing CAC members an understanding of your UCEDD and their role in providing input into the UCEDD’s 5 Year Plan. Content Covered: – Orientation to the UCEDD – Core Functions – Areas of Emphasis – The 5-Year Plan – Communication with the CAC AUCD Annual Meeting 2007

Module IV: The Advocacy Continuum Exercise AUCD Annual Meeting 2007 The goal of this module is to give new and existing CAC members a clear understanding of their role in advising the UCEDD.

Module V: CAC Development Tools The goal of this module is to facilitate a discussion around strategies to enhance the work of your CAC through organizational tools and recruitment and retention ideas. Content Covered: – Organizational tools for the CAC – Recruitment and Retention Strategies – Welcoming New CAC Members AUCD Annual Meeting 2007

How is the CAC Curriculum being used?: Harold Klienert – Director, Interdisciplinary Human Development Institute, University of Kentucky Kendall Corbett, BA, Wyoming INstitute for Disabilities, University of Wyoming Laurel Ryan, MFA, Boling Center for Developmental Disabilities, University of Tennessee Health Science Center Carl Calkins, PhD, Institute for Human Development, University of Missouri AUCD Annual Meeting 2007

Personalizing the CAC Orientation Curriculum for Your UCEDD Harold L. Kleinert AUCD November 11,

Key Questions… Is this orientation for your whole CAC, as a way of “re-orienting” them to their essential work and enabling them to see the connection to the national picture and to their state’s DD Network? Is this presentation for new members, who are just coming onto your CAC? 13

Key Questions - Continued Have you allocated sufficient time to cover all elements of the CAC Orientation Curriculum? Or will you focus upon those elements most crucial to the immediate needs of your own CAC? 14

At Our UCEDD… We wanted to orient our five new members, but we also wanted to include our entire CAC in this activity. We did not have sufficient time to cover the entire curriculum, so we had to prioritize according to our CAC’s immediate needs, including our upcoming Five Year Plan. 15

Introduction to HDI’s Consumer Advisory Council Resources to enhance the relationship between CAC members and HDI Adapted from the AUCD Orientation Curriculum by Laura Walker 16

17 The DD Act HDIKY P&A KY Council on Developmental Disabilities Project of National Significance ADD

Understanding our UCEDD It is important to think about HDI in the context of our state DD Network It is also very important to think about the specific needs of our state. 18

What is our State DD Network? UCEDD ( HDI) + DD Council + P&A = State DD Network 19

Relationship between HDI and the Consumer Advisory Council So why am I here? 20

What is the Basic Role of a Consumer Advisory Council? Advise and guide the work of HDI Helps create and move toward the vision of HDI for people with disabilities and community Contribute to compliance with the DDA Act: the function (and make up) of CACs is required by law Serves as an informal and important bridge between the community and the university in our state 21

So What is the Work and the Vision of HDI? To improve opportunities for persons with disabilities and their families across the life-span And what do we look like?…well, you had to ask! 22

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What are other benefits of the CAC-HDI relationship? The CAC is a bridge from the University and HDI to the Community and to our State Participation in the CAC can serve as leadership development for members as disability advocates and mentors Bring together decision-makers (our state agency folks!) and different perspectives that may not have met before Opportunity for a culturally diverse forum on disability 24

Discussion with your UCEDD Director (that’s me!) How do we share information with our CAC? What is the history of our CAC? – Started Formally in 1998 – Created By-Laws in

Discussion with your UCEDD Director What is a 5 year plan? Our plan to address certain needs or goals over a 5 year period. We apply every 5 years for a UCEDD Core grant to ADD Core funding application to ADD has to include our 5 year plan Our Next Five Year Plan is Due in a Year! 26

Discussion with your UCEDD Director General development steps of a 5 Year Plan: – We ask our state DD Network and community partners for input on improving the future for people with disabilities and their families in their state – Our CAC is directly involved in developing goals with this input – Our CAC is also involved in annually reviewing our progress on our five-year plan 27

Developing Our 5 Year Plan… Step 1: Develop joint statewide needs survey with KY DD Council and Protection and Advocacy Step 2: Review the needs data with our CAC and identify preliminary priorities Step 3: Review and expand our priorities with HDI staff Step 4: Refine our state plan with our CAC Step 5: Get input throughout the process on our 5- year plan from State DD Council, Protection & Advocacy Agency and State Self-Advocacy organization and appropriate University representatives 28

What are the Core Functions of HDI? Conducting Interdisciplinary Training (Goal 1) Promoting Exemplary Community Service Programs (Goal 2 and 3) – Technical Assistance – Training – Direct and Other Services Conducting Research (Goal 4) Dissemination Activities (Goal 5) 29

Goal 1: Conducting Interdisciplinary Training Teaching University Courses Graduate Certificate in Developmental Disabilities Our Research Assistants Across Many Disciplines! Developmental Rotation for Physicians Family Mentorships 30

Goals 2 and 3: Promoting Exemplary Community Service Programs Providing training to help service providers, state agencies, and others to be able offer the best possible supports in community-settings – Technical Assistance Providing guidance on best practices to community, state, and federal agencies – Training Education on community services to local, state, and national audiences – Direct Service Assistive technology consultations 31

Goal 4: Conducting Research and Evaluation Research and Evaluation – Basic and applied strategies to answer questions of importance to people with disabilities and their families – A way to see if programs are effective or not – And most importantly - involving individuals with disabilities and their families in creating the research questions, designing the research, implementing and evaluating it! Example: Brighter Tomorrows! 32

Dissemination Activities Information sharing about best practices: – HDI Research published in journals – Hosting statewide conferences – Speaking at national conferences and newsletters – Informing policymakers – Videos, CDs, and other training materials – Websites: (and our specialty sites):

Areas of Emphasis Discussion with UCEDD Director The DD Act establishes eight areas of emphasis for ADD programs Employment Education Child CareHealth HousingTransportation RecreationQuality Assurance Other (for emerging issues) 34

Quality Assurance Self-Determination/ Self- Advocacy – “No one knows what you need more than you do, and you have to speak up for yourself” Monitoring the Quality of Services That People Receive 35

Education/Early Intervention Early Intervention – “Start early so individual with disability & their family can learn skills to make best possible outcome and future” Education About Disabilities Professional Development Inclusion Transition Parental Involvement/Rights 36

Child Care Opportunities for Care – “Children should have an opportunity like everyone else” Inclusion 37

Health Related Issues Funding Access/Availability Quality of Care – “Doctors that listen to patients and understand them and care both emotionally and physically” Education 38

Employment Issues Choices Supports Getting Employment – “Being placed in appropriate job that allows productivity” Training/Education 39

Housing Issues Availability/Adequate Housing – “Availability of housing that is both affordable on low incomes and accessible to a wide variety of disabilities” Accessibility Affordable Independent 40

Transportation Access to Transportation Funding/Cost – “There are a lot of Kentuckians that CANNOT drive and yet in a lot of counties we don’t have transit systems that are cost effective for a fixed income.” 41

Recreation Opportunities – “Having opportunities for special needs kids to participate in specialized recreation activities… where their disability is understood and taken into consideration” 42

The Advocacy Continuum The many roles of a disability advocate 43

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Small Group Breakout In your small group, each person should give an example of one of the different types of advocacy: – Self-Advocacy – Family-Advocacy – Advocacy for another individual – Systems Advocacy 1)Appoint a recorder to write your stories down! 2)Decide on what story that you want to report out! 45

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Advocacy Continuum Exercise Continued Give an example of advocacy for each of the following situations. Choose one to report out from your group. Advising the UCEDD as a CAC member: – Self-Advocacy – Family-Advocacy – Advocacy for another individual – Systems Advocacy 47

Wyoming CAC Perspective: Kendall Corbett Coordinator of Consumer Activities Wyoming INstitute for Disabilities (WIND) 48

Tennessee CAC Perspective: Laurel Ryan Family Faculty Coordinator UT Boling Center for Developmental Disabilities 49

Technical Assistance/Site Visit at Other UCEDDs Perspective: Carl Calkins Director- University of Missouri, Kansas City Institute for Human Development AUCD Annual Meeting 2007

Results of Survey of UCEDDs Many UCEDDs/CACs are already using the curriculum and adapting it to their needs Can be used with new or existing members together Self-advocates and parents report they understand the DD Act programs better Alternate formats are important additions for increased diversity of CACs AUCD Annual Meeting 2007

Questions and Other Experiences Using the CAC Curriculum from the Audience AUCD Annual Meeting 2007