Self-Advocacy Summits Final Report: “Envisioning the Future: Allies in Self-Advocacy”

2012 Summit Report

September 30, 2012
Audience:
Administration on Intellectual and Developmental Disabilities (AIDD)
Topics:
Self Advocacy
Types:
Reports, Website

Content

Introduction

In September 2012 the Association of University Centers on Disabilities published “Envisioning the Future: Allies in Self-Advocacy,” a report discussing the activities and findings of the self-advocacy summits that were held in 2011 and 2012. An earlier version of the report, authored by individuals from the Institute on Disability and Human Development at the University of Illinois at Chicago, was released in 2011 after the first round of summits was completed. The final report incorporated findings and observations from the 2012 summits into the 2011 report.

Visit the 2012 Summit Report page on the Allies in Self-Advocacy website to access several formats of the 2012 report, including the full report, a report summary edited by self-advocates, a video of the summary, and a version of the full report that is accessible to screen readers.

About the Self-Advocacy Movement

The self-advocacy movement is a human and civil rights movement led by individuals with intellectual and developmental disabilities. Self-advocates fight discrimination, learn how to make decisions that affect their lives, gain leadership opportunities, and develop a positive self-identity and sense of disability pride. The movement has helped individuals fight negative stigma and achieved advances in social justice.

National self-advocacy organizations include Self Advocates Becoming Empowered, the National Youth Leadership Network, and the Autistic Self Advocacy Network.

There are currently 1,200 local self-advocacy chapters in the United States, and an estimated 31 states have formal state self-advocacy organizations. Internationally, 43 other countries have formed national organizations.

Self-advocacy organizations have taken different approaches in terms of structure (state vs. regional structure) and focus (cross-disability vs. subgroup or issue focus), with varying degrees of success. To continue making progress, the self-advocacy movement needs to better coordinate the varying approaches to self-advocacy that have evolved at the local, state, and national levels.

In addition, the self-advocacy movement has struggled to secure stable funding for infrastructure and supports. Some states have strong self-advocacy movements, while others have been weakened due to loss of funding or are just beginning to organize their movements.

Summit Details

To better understand the current state of the self-advocacy movement, AIDD collaborated with self-advocates, allies, and the Developmental Disabilities Network (or DD Network, which includes State Councils on Developmental Disabilities, State Protection and Advocacy Systems, and University Centers for Excellence in Developmental Disabilities) to hold a series of regional self-advocacy summits in 2011 and 2012. The summits were organized around the following goals:

  • Assess the current state of self-advocacy in the states (support structure, activities, accomplishments, challenges)
  • Plan steps to strengthen and enhance state-level efforts
  • Develop recommendations for national-level actions
  • Develop policy recommendations to strengthen the self-advocacy movement across the country

The Association of University Centers on Disabilities (AUCD) led the organization of the summits, which were funded through the technical assistance contracts of AUCD, the National Association of Councils on Developmental Disabilities, and the National Disability Rights Network. A planning committee guided the summits.

Every state and U.S. territory participated in the 2-day summits. In 2011 AUCD led five regional summits with 30 states, and in 2012 it led four summits with 26 states and U.S. territories.

The 2011 summits were held in Atlanta, GA; Los Angeles, CA; Kansas City, MO; Columbus, OH; and Providence, RI.

The 2012 summits were held in Baltimore, MD; Honolulu, HI; Chicago, IL; and Seattle, WA.

Summit Activities

Each state or territory developed a 9–12 person team composed of self-advocates and professionals. In preparation for the summits, state teams created presentations that provided overviews of their activities, accomplishments, and challenges.

During the summits, participants shared information about the self-advocacy movement in their states, networked with peers, developed state plans to strengthen the movement in their state, and developed recommendations for national actions and policy. At the end of each day, participants reflected and provided feedback through “open mic” sessions.

Planning committee members made improvements to the summits as they were held, including providing background information about AIDD, recruiting self-advocate facilitators for breakout sessions, and improving accessibility accommodations.

In addition, the 2012 summit participants had the opportunity to review the recommendations from the 2011 summits and build upon them or make additional recommendations.

Commissioner Sharon Lewis at the Summit in Atlanta, Georgia

Final Report Findings

The main findings of the report are organized into three areas based on the goals of the summits: 1) the state of self-advocacy in the states and territories; 2) plans to strengthen self-advocacy in the state and territories; and 3) recommendations for national actions and policy.

The State of Self-Advocacy in the States and Territories

With presentations led by self-advocates, state teams provided an overview of their resources, activities, accomplishments, and challenges. Some state teams had collaborated for many years, while others were just beginning to work with each other.

Resources to Support Self Advocacy

The states reported that they received funding from state and federal agencies, private foundations, donations, fundraising, and membership fees. Twenty states reported that they received some level of funding through their state developmental disabilities services agency, and five states reported receiving funding from AIDD through partnerships with other grants. States were also supported by the DD Network.

Even though some states received higher levels of funding than others, in general the total operating budgets of self-advocacy organizations were extremely low and vulnerable to cuts.

Major Activities and Accomplishment

State teams reported activities and accomplishments in the following areas:

  • Advocacy. The states’ advocacy efforts focused on key issues such as employment, affordable and accessible housing, accessible transportation, and postsecondary education. Self-advocates were also involved in legislative advocacy and voting initiatives.
  • Training and leadership development. States conducted skill-building workshops, peer support and mentoring, and youth leadership activities. A major role of many self-advocacy organizations was to provide a supportive space for people with disabilities to discuss concerns and help each other solve problems.
  • Public education and outreach. Many states focused on educating the public on disability awareness, accessibility, and the importance of using respectful or People First language.
  • Partnerships and collaboration. State teams reported partnering with state agencies, businesses, and allies to create coalitions and develop common goals and messages for advocacy. One state created partnerships with organizations in the public and private sector that provide funding from multiple sources.

Challenges

State teams identified challenges in multiple areas:

  • Infrastructure. Lack of funding and lack of support from advisors were the most frequently mentioned challenges. Another significant challenge was difficulty in finding and retaining advisors and obtaining support that was empowering rather than controlling.
  • Community services and supports. States indicated a lack of broader community services and supports. Lack of transportation, lack of employment opportunities, and lack of individualized housing options were the biggest challenges.
  • Outreach and communication. States reported challenges in recruiting and developing leaders and maintaining current membership. Some states reported that efforts among state self-advocacy organizations could be better coordinated.
  • Negative public perception. Some states reported that perceptions of service providers and families were major challenges. Many teams reported that self-advocates still face significant discrimination and feel that their voices are not heard.

Plans to Strengthen Self-Advocacy in the States and Territories

At the summits, teams developed plans to strengthen and enhance self-advocacy in their states and shared presentations on these plans with all participants. Most teams focused on two or three goals and outlined specific steps to achieve them.

The state plans covered six major themes: training and leadership development; infrastructure to support self-advocacy; cross-disability coalitions, partnership, and allies; outreach and communication; public education; and community services and supports. Examples of goals include providing more training and mentoring opportunities for self-advocates, securing funding and resources, and expanding regional self-advocate coordinators throughout the state.

Recommendations for National Actions and Policy

State teams developed recommendations for national actions and policy to lead to a stronger, more effective, and long lasting self-advocacy movement across the country.

The national actions included recommended activities for AIDD, focusing on four themes: strengthening support for self-advocacy, promoting self-advocacy within the DD Network and at the federal level, conducting outreach and public education about self-advocacy, and collaborating with other federal agencies on issues that affect the lives of self-advocates.

Teams also suggested changes to the Developmental Disabilities Act (DD Act) and made broad policy recommendations, such as making Employment First a national policy. The most frequently made recommendation for the DD Act was to authorize self-advocacy information and training centers, which was seen as vital to acknowledging self-advocates as equal partners in the DD Network.

Evaluation and Feedback

As reflected in meeting evaluation forms, nearly all the participants felt that the summits were useful. The summits created an increased awareness of the self-advocacy movement and its presence across the country; increased collaboration among self-advocates; improved individuals’ understanding of AIDD, the DD Network, and the DD Act; and helped participants learn about the state of the movement in other states. Participants reported that the summits motivated them and their team, and they valued having the opportunity to spend time with their peers.

Participants expressed the need to more clearly define self-advocacy. They noted that different groups had different interpretations, especially in terms of the difference between individual self-advocacy, self-advocacy organizations, and even the definition of “self-advocate.”

The self-advocacy summits succeeded at energizing participants and producing recommendations to advance the movement at the national level.

Maintaining Momentum: Allies in Self-Advocacy Website

Moving forward, self-advocates face a challenge in maintaining the momentum of the self-advocacy summits and staying connected with each other. To continue the conversation and promote information sharing, the AIDD-funded Allies in Self-Advocacy website was created. Visit the site to access a variety of resources, including the following:

Visit Allies in Self-Advocacy website