Lifting Voices of Self-Advocacy on the Prairie

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

10. 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 2017-2019 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 brent.askvig@minotstateu.edu • Steven Beard nodakman11@gmail.com • Allen Becker allenbecker16@gmail.com • Julie Horntvedt jhorntvedt@nd.gov • Teresa Larsen tlarsen@nd.gov 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.