Pre-Summit Introduction for 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.

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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.

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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.

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.

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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.

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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.

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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.

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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)

• Human Services Research Institute (HSRI)

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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

TIME ACTIVITY

7:30-8:30 AM Registration and continental breakfast with state teams

8:30-9:30 AM Welcome and Plenary Panel

9:30-10:30 AM 4 States Present their “State of the State” PowerPoints

10:30-11:00 AM Break

11:00-12:00 AM 3-4 States Present their “State of the State” PowerPoints

12:00-1:00 PM Lunch

1:00-1:15 PM Instructions for Organization/Peer Breakouts

1:15-2:15 PM Breakout Session: Organization/Peer

2:15-2:45 PM Break

2:45-3:00 PM Instructions for State Team breakout: State Planning

3:00-5:00 PM State Team Breakout Session: State Planning

5:00-5:30 PM Open Mic- Feedback on First Day & Preparation for Second Day

5:30-7:00 PM Reception

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Draft Agenda – Day 2

TIME ACTIVITY

7:30-8:30AM Continental Breakfast with State Teams

8:30-8:45 AM Welcome, Review previous day 1, Preview today

8:45-9:45 AM State Teams Report Back to group with State Plans

9:45-10:00 AM Learn about Power Up!

10:00-10:30 AM Break

10:30-10:45 AM Instructions for State Team Breakout Sessions: National Recommendations

10:45 AM-12:15 PM State Team Breakout Session: National Recommendations

12:15-1:15 PM Lunch

1:15 -2:15 PM State Teams Report Back to full group with National Recommendations

2:15-2:45 PM Open Mic: Feedback for Summit

2:45-3:00 pm Closing Comments

3:00- 3:15 PM Leave for home

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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.

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• 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 Time Needs

Note-Taker Assignment

Monday, March 19

7:30 am-1:15 pm Plenary room - optional Notetakers welcome to join, listen, understand context prior to breakout sessions

1:15-2:15 pm Breakout rooms - optional No notetakers in organizational/peer breakouts

2:15-3:00 pm Plenary room - optional Notetakers 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 pm 8 notetakers in breakout rooms + 1 flip chart notetaker with DC

Jackie, Lauren, Cherekana, Liz, Maureen, Emma, Chad, Aisha

Tuesday, March 20

7:30-10:45 am Plenary room - optional Notetakers 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 am 8 notetakers in breakout rooms + 1 flip chart notetaker with DC

Rachel, Christine, Samantha, Blair, Josh, Mary, Emma, Chad, Jackie

12:15 am-3:00 pm Plenary room - optional Notetakers welcome to join, listen to team recommendations & ADD commissioner’s closing

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Note Taker Assignments:

State Breakouts (Day 1)

State Room

Co-Facilitator Co-Facilitator Note-Taker

Connecticut Galena Liz Weintraub Zach Martin Rachel Busarello

District of Columbia Essex C Stacey Milbern Ian Waitlington

Jackie Stone

f/c: Aisha Mason

Delaware Falkland Nachama Wilker Savannah Logsdon-

Breakstone Lauren Harpole

Maryland Harbor AB

(plenary room) --- Sheryl Matney Cherekana Feliciano

New Hampshire Heron Julie Petty Jaime Daignault Liz Rinehart

Puerto Rico Essex A --- George Jesien Maureen van Stone

Virgin Islands Iron --- Dawn Rudolph Emma Taylor

West Virginia Essex B Betty Williams Hillary Spears Chad Nazworth

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Note Taker Assignments:

State Breakouts (Day 2)

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State Room

Co-Facilitator Co-Facilitator Note-Taker

Connecticut Galena Liz Weintraub Zach Martin Rachel Busarello

District of Columbia Essex C Stacey Milbern Ian Waitlington

Christine Semon

f/c: Jackie Stone

Delaware Falkland Nachama Wilker Savannah Logsdon-

Breakstone Samantha Hardesty

Maryland Harbor AB

(plenary room) --- Sheryl Matney Blair Inniss

New Hampshire Heron Julie Petty Jaime Daignault Josh Greenfield

Puerto Rico Essex A --- George Jesien Mary Coster

Virgin Islands Iron --- Dawn Rudolph Emma Taylor

West Virginia Essex B Betty Williams Hillary Spears Chad Nazworth

Day #2 Back-Up: Maureen van Stone

Baltimore Marriott Waterfront

700 Aliceanna Street, Baltimore, MD 21202

(410) 385-3000

Summit Location

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For questions and assistance,

please contact:

Before & Onsite: Onsite:

Hillary Spears Corina Miclea Rotsko

HSpears@aucd.org (at registration desk)

Phone: (301) 588-8252

Cell: (614) 354-7388

Before: www.AlliesInSelfAdvocacy.org

Onsite: anyone with an orange lanyard and “Ask Me” ribbon can help you