How Self Advocacy got its

Mojo Back!

Maine Developmental Disabilities Council

225 Western Avenue, Suite 4Augusta, ME 04330

Phone: 207-287-4213Toll Free: 1-800-244-3990

www.MaineDDC.org

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 SystemCommunity-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

?

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?

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 Nancy.E.Cronin@maine.gov

• Rachel Dyer, Associate Director, Maine Developmental Disabilities Council Rachel.M.Dyer@Maine.gov

• David Unger, Executive Director, Speaking Up for Us, exdirectorsufu@sufumaine.org