1. Lifting Voices of Self-Advocacy on the Prairie
Steven Beard
Allen Becker
Julie Horntvedt
Teresa Larsen
Brent Askvig

2. Purpose of this presentation
Describe process in developing and maintaining a statewide self- advocacy network
Talk about barriers
Talk about successes
Share experiences in developing leadership in the network
Future plans for the network

3. Advocates Leading their Lives (ALL)
PURPOSE
The purpose of the Advocates Leading their Lives (ALL) Network is to ensure that people with disabilities are treated as equals, and they are given the same decisions, choices, rights, responsibilities, and chance to speak up to empower themselves to live, learn, recreate, and work.
Personal perspectives
Steve “Pulling everyone together so we can help each other.”
Allen “access to buildings, events, the community”
Julie “bring groups from all across the state to have one voice for advocates”

4. MISSION OF ALL
Recognizing we all have different abilities, we come together to advocate for ALL; to serve all individuals from across the state, to discuss issues, and to be inclusive.
ALL will:
• Be a network of individuals and organizations from the ENTIRE state;
• Focus on STATEWIDE issues;
• Be recognized as a STATEWIDE entity;
• SUPPORT and DEVELOP individuals with disabilities throughout the state;
• SUPPORT and DEVELOP local/regional organizations throughout the state;
• SUPPORT and DEVELOP facilitators throughout the state;
• HAVE A STATEWIDE mission, vision and focus;
• HAVE A STATEWIDE strategic agenda;
• HAVE STATEWIDE activities and training

5. Why was ALL needed??
Self-advocacy groups were organized and operated within their own communities. The lack of support and finances often stopped the groups from meeting.
There was no coordination effort across the state.
State legislators talked about how different groups came forth with different options/ideas, and this left legislators confused about how to approach legislation. Thus several bills did not pass.
Many self-advocacy groups were disability specific, and not always inclusive.

6. Getting Started
The self-advocate committee of the state DD Council held focus groups around the state and reached out to local community self advocacy groups about their needs and about their futures.
The state DD Council then held a grant opportunity for self-advocacy groups to establish a statewide organization. Only 1 application was received and that was non-responsive to the tasks required.
The North Dakota State Council of Developmental Disabilities decided to take on the task in-house, and partnered with the North Dakota Protection and Advocacy Project, and the North Dakota UCEDD (NDCPD).

7. Getting Started
We were committed to getting the state network organized, but were clear that this would be run by self- advocates, not the DD Network partners.
Dr. Carl Calkins and his team from the Missouri UCEDD held a two day kick- off/planning session so that self- advocates could focus on what they wanted and where they wanted to go with the organization.
The self-advocates changed the name from North Dakota Self-Advocacy Network (NDSAN) to ALL.

8. A Typical ALL meeting
Attendees: up to 70 at each meeting; held quarterly, face to face; executive board meets month face to face; have 100 registered members!
Agenda: constructed by members from surveys and member input; DD Council staff put it together
Speakers: Bank of ND – Able Act; Legislators; ND Attorney general – online safety and scams; Dietitian from ND Cancer center; state DD agency head; and many others
Business meeting/upcoming issues – member discussion, bylaws, etc.
Activities for members: get to know you bingo; small group breakouts on issues/topics; short video or movie with discussion

9. Report - Self-Advocate Solutions Conference (SAS), April 2018.
Time
Topic
Presenter
9:00 a.m.
Welcome
President, Steve
Report - Self-Advocate Solutions Conference (SAS), April 2018.
Non-profit status (501c3)
Report - Conference in Salt Lake City
9:30 a.m.
Movie - Body and Soul
10:15 a.m.
Break
10:30 a.m.
Member Bingo
Legislator to Work Day
Kaelee Knoell
Small Group Discussion
Discuss movie and future legislative work.
12:00 p.m.
Lunch - Meal sponsored by the North Dakota Disabilities Advocacy Consortium.
1:30 p.m.
ABLE Accounts
James Barnhardt
Bylaw Review - Bylaws Review and Back up Volunteers for Board of Directors Positions.
2:45 p.m.
3 p.m.
Get Smart on Scams
Tonya Hetzler
4 p.m.
Adjourn
Note
Next meeting - Tuesday November 14, 2017 from 9-4 at the Ramada in Bismarck.

10. Participation in state and national meetings
ALL activities
State Legislative Day
Legislative agenda
Participation in state and national meetings

11. Legislative Day at State Capitol

12. Advocates Leading Their Lives (ALL) Self-Advocacy Network
Legislative Priorities
Support legislation that promotes expanded funding for home & community-based services
Affordable, integrated, and accessible housing
Improved transportation; better hours, accessibility, low cost, and reliable private and public transportation
Medicaid coverage, continuation of Medicaid Expansion
Access to quality health care, especially in rural communities
Community inclusion for people with disabilities; especially making state parks accessible and affordable
We support the elimination of seclusion and restraint procedures for people with disabilities in all settings including schools, community service settings, and other settings where people with disabilities receive services
Quality training for service providers
Inflationary/salary/benefit increases for providers and Direct Support Professionals
We support Employment 1st philosophy for minimum wage jobs
Encourage appropriate supports and training of Law Enforcement to know how to work with people with disabilities in the justice system
Increased and improved guardianship services and use of Supported Decision Making in North Dakota as an alternative to guardianship services
Eliminate abuse, neglect and exploitation of people with disabilities
Manageable loads for Case Managers to assure individualized and quality services
Better reimbursement rates/procedures for service providers so individuals with disabilities do not have to pay for mileage or for their staff to join them on outings/events
We support the ABLE Act so individuals with disabilities can save more without impacting the individual’s ability to receive federal aid

13. Things we tried – and they didn’t work!!!
Online or interactive video meetings
Annual meetings only
No financial support for members
Using only one way to contact people for meetings, invites, etc.

14. Associated Groups Social Capitol
Local self-advocacy groups e.g., Arc, SABE, SAS
Family Voices of ND
Community providers
North Dakota Disabilities Advocacy Consortium
AARP

15. Becoming a Leader in ALL
Deciding to come to an ALL meeting
Deciding to run for an office in ALL
Asking for leadership training
What happens in leadership training?
How we will help others become leaders?

16. The Future of ALL Non-profit status
Grow Membership – cross disability, across the state
Decrease level of DD network supports
Youth advocacy
New leaders
New initiatives: serve as resource for legislators

18. Contact Information
Brent Askvig
Steven Beard
Allen Becker
Julie Horntvedt
Teresa Larsen
This presentation was sponsored in part by a grant to Minot State University from the Administration on Community Living (#90DDUC002901). The opinions expressed here are those of the presenters and do not necessarily reflect the policy or opinions of the Administration on Community Living.