Pre-Summit Introduction for Chicago Note-Takers

What is the Allies in Self-Advocacy Summit? An initiative supported by the Administration on Developmental Disabilities (ADD) Four-fold purpose: 1. to assess what is currently happening in the states in self- advocacy – the support structures, activities, accomplishments and challenges; 2. to plan steps we can take to strengthen and enhance current efforts at the state level; 3. to develop recommendations for actions that we can take at the national level; and 4. to develop policy recommendations that can lead to a stronger, more effective, and long lasting self-advocacy movement across the country. 2

What is Self-Advocacy? A civil rights movement for people with developmental disabilities. It refers to people with disabilities taking control of their own lives and speaking up for themselves. It means that although a person with a disability may call upon the support of others, the individual is entitled to be in control of their own resources and how they are directed. It is about having the right to make life decisions without undue influence or control by others. Seeks to reduce the isolation of people with disabilities and give them the tools and experience to take greater control over their own lives. The self- advocacy movement for people with intellectual disabilities lags far behind many other civil rights efforts, such as those related to race or physical disabilities. Has its roots in the broader civil rights movements of the 1960s and 1970s but is in many respects still in its infancy. In North America the self-advocacy movement is led by a national organization called Self Advocates Becoming Empowered (SABE) and is supported locally by a relatively small number of organizations, and internationally through the People First organization.SABE 3

4 The Administration on Developmental Disabilities (ADD) is the U.S. Government organization responsible for implementation of the Developmental Disabilities Assistance and Bill of Rights Act of 2000, known as the DD Act. ADD, its staff and programs, are part of the Administration for Children and Families, of the U.S. Department of Health and Human Services. Administration for Children and FamiliesU.S. Department of Health and Human Services The DD Act authorizes the “DD Network,” which refers to the triad of DD network partners that now exists in every state and territory in the United States. Each of these network partners also has a national association, who also provides technical assistance to the respective partners. 4

DD Network Authorized by the DD Act: 1.State Councils on Developmental Disabilities (DD Councils) Functions to increase the independence, productivity, inclusion, and community integration of people with developmental disabilities. DDC activities demonstrate new ideas for enhancing people's lives through training activities, through community education and support, by making information available to policy-makers, and by eliminating barriers. 5

DD Network Authorized by the DD Act: 2.Protection and Advocacy for People with Developmental Disabilities (P&A) Functions to empower, protect, and advocate on behalf of persons with developmental disabilities. The P&As are independent of service-providing agencies and offer information and referral services for legal, administrative, and other remedies to resolve problems for individuals and groups of clients. P&As enhance the quality of life of people with developmental disabilities by investigating incidents of abuse and neglect and discrimination based on disability. The P&As also provide an annual opportunity for the public to comment on the objectives, priorities, and activities of the system. This gives clients and others in the community an opportunity to voice their concerns and needs to the P&A. 6

DD Network Authorized by the DD Act: 3.University Center for Excellence in Developmental Disabilities Research, Education, and Service (UCEDD) Functions to support interdisciplinary training, exemplary services, technical assistance, research, and information/ dissemination activities. University Centers positively affect the lives of individuals with developmental disabilities and their families by increasing their independence, productivity, and integration into communities. University Centers have four broad tasks: conduct interdisciplinary training, promote community service programs, provide technical assistance at all levels (from local service delivery to community and state governments), and conduct research and dissemination activities. 7

8 National Partners ADD National Self Advocacy Organizations Self Advocates Becoming Empowered National Youth Leadership Network Autistic Self Advocacy Network National TA Providers for the DD Network Association of University Centers on Disability (AUCD) supporting UCEDDs National Association of Councils on Developmental Disabilities (NACDD) supporting DD Councils National Disability Rights Network (NDRN) supporting P&As Other Key National Partners National Association of State Directors of Developmental Disabilities Services (NASDDDS) National Association of State Directors of Developmental Disabilities Services Human Services Research Institute (HSRI) Human Services Research Institute

9 State Teams : Regional Summit Participants State self-advocacy organization representatives People First Self Advocates Becoming Empowered (SABE) National Youth Leadership Network (NYLN) Autistic Self-Advocacy Network (ASAN) Other self-advocacy organizations existing in each state DD Council representative P&A representative UCEDD representative DD state agency representative Other key partners in state (ARC, other state agencies, parent groups, etc.)

Draft Agenda – Day 1 TIMEACTIVITY 7:30-8:30 AMRegistration and continental breakfast with state teams 8:30-9:30 AMWelcome and Plenary Panel 9:30-10:30 AM4 States Present their “State of the State” PowerPoints 10:30-11:00 AMBreak 11:00-12:00 AM3 States Present their “State of the State” PowerPoints 12:00-1:00 PMLunch 1:00-1:15 PMInstructions for Organization/Peer Breakouts 1:15-2:15 PMBreakout Session: Organization/Peer 2:15-2:45 PMBreak 2:45-3:00 PMInstructions for State Team breakout: State Planning 3:00-5:00 PMState Team Breakout Session: State Planning 5:00-5:30 PMOpen Mic- Feedback on First Day & Preparation for Second Day 5:30-7:00 PMReception 10

Draft Agenda – Day 2 TIMEACTIVITY 7:30-8:30AMContinental Breakfast with State Teams 8:30-8:40 AMWelcome, Review previous day 1, Preview today 8:40-9:40 AMState Teams Report Back to group with State Plans 9:40-9:45 AMLearn about Power Up! 9:45-10:15 AMBreak 10:15-10:45 AMInstructions for State Team Breakout Sessions: National Recommendations 10:45 AM-12:15 PMState Team Breakout Session: National Recommendations 12:15-1:15 PMLunch 1:15 -2:15 PM State Teams Report Back to full group with National Recommendations 2:15-2:45 PMOpen Mic: Feedback for Summit 2:45-3:00 pmClosing Comments 3:00- 3:15 PMLeave for home 11

Note Takers’ Role You are a key player in this national initiative! Your role is critical in capturing the information needed for ADD’s strategic plan. Thank you! The facilitators’ and note-takers’ notes are extremely important because they will be compiled as qualitative data to inform the final report. ADD will utilize this final report to develop its strategic plan. Please make sure to thoroughly document the discussions of the plenary or breakout room to which you are assigned, including any good quotes. Also capture what is being written on the flip charts. Take note of the general feeling/mood in the room and any interesting dynamics Please be the “silent observer” in an unobtrusive spot in the room, taking notes on a laptop. 12

What was in notetaker’s notes: “Require medical training for adults with disabilities” What was written on the flip chart: “Require doctors to have more medical training for adults with disabilities” Example from Previous Summit

Note Takers’ Template & Logistics See Word document for template and example… BYOL (Bring Your Own Laptop) Template will be provided on flash drive to each notetaker Take your notes in the template on the flash drive Save notes to flash drive when completed Review notes with co-facilitators to ensure accuracy Especially state plan and national recommendations, which will be presented back to full audience after those breakout sessions Day 1 - return flash drive to registration desk, or leave with your facilitator Day 2 – return flash drive to head table so recommendations can be copied & pasted into afternoon ppt presentation

Note Taker Assignments - Overall TimeNeedsNote-Taker Assignment Thursday, April 19 7:30 am-1:15 pmPlenary room - optionalNotetakers welcome to join, listen, understand context prior to breakout sessions 1:15-2:15 pmBreakout rooms - optionalNo notetakers in organizational/peer breakouts 2:15-3:00 pmPlenary room - optionalNotetakers welcome to join, listen, understand context prior to breakout sessions (recommend notetakers to arrive by 2:30pm to get flash drive, set-up and talk to facilitators) 3:00-5:00 pm8 notetakers in breakout rooms + 1 flip chart notetaker with DC Jackie, Lauren, Cherekana, Liz, Maureen, Emma, Chad, Aisha Friday, April 20 7:30-10:45 amPlenary room - optionalNotetakers welcome to join, listen, understand context prior to breakout sessions (recommend notetakers to arrive by 10:15am to get flash drive, set-up and talk to facilitators) 10:45-12:15 am8 notetakers in breakout rooms + 1 flip chart notetaker with DC Rachel, Christine, Samantha, Blair, Josh, Mary, Emma, Chad, Jackie 12:15 am-3:00 pmPlenary room - optionalNotetakers welcome to join, listen to team recommendations & ADD commissioner’s closing 15

Note Taker Assignments: State Breakouts (Day 1) 16 StateRoomCo-Facilitator Note-Taker IowaAthens JaimeJulie Kelsey Havell TexasInternational Ballroom SherylTia Richard Wharton South CarolinaBerlin ZachLiz Emily Langley IllinoisSmaller International Ballroom NancySavannah Elizabeth McBride LouisianaDublin Dawn--- Shalinee Khurana KentuckyLondon Hillary--- Sofia Anastasopoulous NebraskaGrand Ballroom IanAmie Janie Mejias

Note Taker Assignments: State Breakouts (Day 2) StateRoomCo-Facilitator Note-Taker IowaAthens JaimeJulie Ami Rukkarnpatega TexasInternational Ballroom SherylTia Anese Adams Collier South CarolinaBerlin ZachLiz Nicole Arens IllinoisSmaller International Ballroom NancySavannah Elizabeth McBride LouisianaDublin Dawn--- Nicole Jorwic KentuckyLondon Hillary--- Christine Daly NebraskaGrand Ballroom IanAmie Natasha Spassiani 17

Hilton Chicago O'Hare Airport O'Hare International Airport, Chicago, IL Tel: Summit Location

19 For questions and assistance, please contact: Before & Onsite:Onsite: Hillary SpearsCorina Miclea Rotsko registration desk) Phone: (301) Cell: (614) Before: I nSelfAdvocacy.orgwww.Allies I nSelfAdvocacy.org Onsite: anyone with an orange lanyard and “Ask Me” ribbon can help you