How Self Advocacy got its Mojo Back! Maine Developmental Disabilities Council 225 Western Avenue, Suite 4 Augusta, ME Phone: Toll Free:

How Did We Get Here? #41 in Population #39 in Size Relative lack of diversity Highest Median Age Contains the Largest Rural County East of the Mississippi “I Lead”

Longstanding economic challenges Relatively generous social benefits

DD Service System Community-based State institution closed in 1996 Relatively low utilization of Nursing Facilities Relatively high utilization of Out of Home residential placements Low utilization of Intermediate Care Facilities Low levels of Family Support Eligibility Based upon diagnosis as well as function Availability From December 2008 to March 2015, the wait list for waiver services increased approximately 1500%.

The Emergence of a Movement: Paige Barton-inspired persons with developmental disabilities to speak for themselves

Early Days Consent Decrees drove the building of a community-based system Early providers were often family members (values based) Early funding was flexible Impacted decision of State to directly support self-advocacy organization

SUFU in the 1990’s: Organization & Growth (Relatively) stable state funding Strong support of visionary service providers Flexibility of funding to provide supports to leaders Leadership continuity of longstanding members and paid advisors

SUFU in the 2000’s: Maturation and Change (Relatively) stable state funding for SUFU 501(c)3 Emergence of additional financial support via the Maine Developmental Disabilities Council (MDDC) Self-advocacy as a part of Person Centered Planning

SUFU in the 2000’s: A Movement Stalls A significant failure in developing sustainability Organizational leadership gap Changes in provision of community services Changes at the MDDC Decreasing membership and engagement Very high emphasis on political activity Challenges in developing new member leaders

Key Questions Do we write this off? Should we get another consultant? What does the MDDC want from its investment? How do we make this sustainable? How should nonprofits operate? Who is qualified to do this work?

Chrysalis An important phone call (whaddaya mean, no one’s in charge?)

Why an Interim Executive Director Positive stakeholder experience SUFU lacked capacity to follow through with consultant recommendations Time limited Consistent with best practices for nonprofits

Mindful Transition Committed Stakeholders Concrete Timeline Structured Hiring Process Clear Expectations Regular Communication

The Model Wasn’t Working Expectation of continued Council funding Money used for transportation of members Individuals with DD attend meetings and hearings to speak about what other advocates want them to communicate Perpetuating stereotypes Little sister agency? Oh my, we needed a change…

What does the Council Need Honest feedback about what the lives of people with DD are like and how they experience the various service systems that they interact with Honest feedback about how people with DD would envision the system to be like. Basically….we need a partner

Changing the Relationship Develop mutual trust It is okay not to agree all the time It is safe to disagree Mutual Respect Valued opinions Valued roles Mutual Interdependence Sister Agency – not Little Sister Agency

Changing the conversation Acknowledging Multi-layered Risk From Basic Funding to Competitive Contracting First Support and Build Capacity Assist with ways that the organization can become independent and self sustaining Ideally is to shift from supportive to collegial relationship

Leveling the Playing field! Develop ongoing communication within a framework of mutual respect and value Provide support so that the self advocacy organization can choose its own destiny Increase the capacity of the organization to support its members to problem solve independently

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Immediate Questions: SUFU is a 501c3, what does this really mean? What is SUFU’s current relationship with our community partners? What does our membership want? Are we working to meet those needs? And…..

What is Self Advocacy?

To me: Self advocacy is more than just speaking up for what you want/believe/need, it’s understanding the process behind it. Self advocacy is understanding a problem solving process to define what you want/believe/need, including what resources are needed. Self advocacy is understanding that when you advocate for yourself, there will be an action and reaction. Can you think what that might be and are you (or will you be) prepared for this?

Answers are Formulating Internally : Discuss these and other questions with Board. Engage the Board in decision making. After all, they are the legally elected officials of a 501c3. Build relationships with Board members.

My “Ahhh Haaaa Moment” “ We are not being talked to, but are talking with you.”

SUFU’s Community Partners do not have open access to our Board meetings any more. Financial Reports are provided to the Board at each meeting by our Treasurer. Before each vote and during discussions, we go around the table and ask if everyone understands what we are discussing. If not, the Board members themselves help explain the issues and questions.

We discuss the actions and potential reactions of each vote. If there are Support Staff at the meeting, we ask them to leave the room on a regular basis so the Board can talk openly with each other.

What is our Anticipated Outcome? Through problem solving, decision making, and understanding the actions and reactions of the decisions, we are teaching our members to understand self advocacy.

Listen and understand what our members need and work to improve our members’ lives.

Behind the Scenes: Leadership Development Program. Hiring SUFU members to be on our staff. User Friendly Technology (including online payroll timesheets) Eliminating SUFU members being “tokens” at the table. Reorganizing our staffing structure. Reorganizing our Chapter structure SUFU paying advisors and moving away from the Service Providers providing the advisors. Provide Chapter Grants

Behind the Scenes: Open a bank account Reorganize our training programs. Creating Funding Opportunities for community giving. SUFU’s first Annual Appeal Vendor Fair Grants

SUFU is a Membership Based Organization. People need to “want to join”. What is the value and benefit of belonging to SUFU?

Nancy Cronin, Executive Director, Maine Developmental Disabilities Council Rachel Dyer, Associate Director, Maine Developmental Disabilities Council David Unger, Executive Director, Speaking Up for Us,