SABE 2012 National Conference – August 30th-September 2nd 2012

Self-advocacy leaders from across the nation congregated in St. Paul, Minnesota on August 30th to September 2nd, 2012 to partake in the 22nd bi-annual conference hosted by Self-Advocates Becoming Empowered (SABE) and Advocating Change Together (ACT). With 49 disability rights workshops to choose from, NAM did its best to cover as many pertinent topics as possible. Luckily, NAM was accompanied by other CAU staff/advocates as a means to obtain maximum information and share resources. As Thursday, August 30th was filled with relaxation, recreational activities and prepping our gimmick to conference goers at NAM’s exhibit table, August 31st signified NAM’s opportunity to expand its repertoire.The first workshop, attended by one of NAM’s advisor, Gillian Speiser, was “Strategies for Working with Advisors to Self-Advocacy Groups”, presented by Tia Nelis and Sheila Collins. This presentation sought to examine the challenges that self-advocacy groups face when retaining or searching for an advisor. In order to maintain a focus, the presentation was broken up into four components which discussed the role of an advisor, applicable training, barriers to support, and ways in which self-advocates can be better supported through their advisors. Many of the subtopics discussed in this presentation can be found through the National Gateway to Self-Determination’s informational guide for advisors, entitled, “Advising through Self-Determination”.

Essentially, an advisor is there to meet the needs of the group by developing leadership skills, assisting with transportation and budgeting, and facilitating discussion amongst group members. Furthermore, effectiveness greatly depends on whether or not an advisor can handle the aforementioned responsibilities while focusing on empowerment and self-determination rather than control. Even though all of those abilities may be present in an advisor, there is a high turnover rate due to the fact that this work is typically treated as volunteer work due to a lack of funding. Since there is no formal training available for self-advocacy advisors, the following qualifications should be recognized when seeking an advisor. Foremost, the advisor must abide by the belief of the group/mission, possess exceptional listening skills, show respect, communicate as equals, and be able to adapt to change. Barriers to support can arise when tension ensues due to different opinions of group members and/or advisors, which is why it is important to educate one another and provide strategies for working through obstacles. Through their research, the presenters have also found that self-advocacy groups want funding to properly train their advisors regardless of the fact that many advisors learn on the job. If there was proper funding implemented for this endeavor, it is likely that advisors would stick with self-advocacy groups. Being that NAM’s advisors are relatively new to the self-advocacy movement, this training was very useful moving forward.

Conversely, Sidney and Gary spilt up to obtain additional information regarding advocacy and closing institutions. Sidney attended, “Community Advocacy: Let’s Work Together”, presented by Johnny Crescendo. Although the workshop was geared towards teambuilding, as participants engaged in an arm wrestling exercise, Sidney wanted to hear more about how to work effectively with other self-advocacy groups. At times, Sidney felt the workshop veered away from its purpose. Gary was pleased with his assigned workshop as he attended, “We Set Our Brothers and Sisters Free and So Can You!” presented by Jeff Ridgeway, Elouise Woods, and James Tucker. This workshop delved into Alabama’s method for closing all of its state institutions. Gary shared his experiences living in an institution in New Jersey and expressed his discontent for the large number of institutions still operating. Although New Jersey is beginning to make strides, as Gary puts it, “New Jersey needs to catch up”.

Shortly after the first workshop of the day, everyone broke out into regional meetings to vote for new representatives and alternate representatives. NAM was delighted to witness the election of Sidney Katz and Gary Rubin as Region 7 Representative and Alternate Representative. After a lengthy lunch break and interactive theatre performance, our team reconvened for the moment that everyone was waiting for, Sharon Lewis addressing participants of SABE regarding upcoming plans underneath the Administration on Developmental Disabilities. After touching upon what was learned at the previous Self-Advocacy Summits in 2011/2012, Sharon Lewis asserted that the ADD needs to prioritize their funding as discretionary spending took a 42% cut in 2011. Evidently, the ADD’s will spend most of their money on research/data collection, while placing an emphasis on employment as it is becoming a growing issue. The ADD will also maintain its commitment to supporting State Developmental Disability Councils (SDDCs), the University Centers for Excellence in Developmental Disabilities (UCEDDs) and the Protection and Advocacy Agencies (P&As) and invest in advisors to build more resources for self-advocacy groups. In turn, two sets of mini grants will be utilized for self-advocacy technical assistance. Lewis poignantly stated that the ADD is, “making sure self-advocacy is at the heart of what we do”.  While the self-advocacy community present at SABE seemed appreciative of the Commissioner’s news, it is still not enough to make the difference we are all seeking.

Representatives from the National Council on Disability took the stage immediately after to debrief the audience of their recommendations for phasing out of sub-minimum wage for people with disabilities, a provision that is currently permitted under the Fair Labor Standards Act Section 14 (c). Their project was executed in New York, Ohio, Vermont, South Dakota, Oregon, Washington and Louisiana between March and May 2012. The council came to their conclusions by meeting with workers with disabilities, families, workshop managers who have obtained 14 (c) certificates, supported employment agencies and state policymakers. Instead of taking immediate action, it is recommended that the federal government eases out of the 14 (c) program so that workers have a sufficient amount of time to transition to a supported employment setting. In order to eliminate the need for this discriminatory policy of the 1930s all together, phasing out should be coupled with a systems change model that is characterized by: 1) benefit planning/work incentive counseling 2) peer support for individual workers and their families 3) providing thorough notification of available supports to workers 4) altering the financial infrastructure of employment services at the state and federal levels, and Congress 5) realign education planning to meet the values of integrated employment, and lastly, 6) abiding by the rules set forth in the Olmstead decision to assist with monitoring and enforcement of these recommendations. If we are to truly practice what we preach then we must ensure that every aspect of the lives of individuals with disabilities is geared towards community inclusion and self-sufficiency.

The morning of Saturday, September 1st opened with a brief speech from Michael Bailey, President of Disability Rights National, who provided updates regarding the conclusions of the Segregated and Exploited Report of 2011 as it relates to employment policy, a renewed grant for Project Vote via AIDD, and the fact that all states are not Olmstead compliant. Afterwards, the CAU/NAM team spilt up to attend our assigned workshops. The first workshop of the morning, attended by Gillian, was, “Revolutionizing How We Think about Work and Disability”, presented by Jeffery Nurick of the Research and Training Center on Community Living, University of Minnesota. This workshop was inspirational as Mr. Nurick spoke of his own journey in search of an integrated and supported employment environment. Despite the fact that Mr. Nurick holds a Bachelors Degree, his employment counselors over the years constantly recommended sheltered workshops and at best, internships, as “suitable” options. As Mr. Nurick was not satisfied with these answers, he decided to move from New York to Minnesota, which led him to his current position at RTC. Clearly unhappy with his own experiences and due to the fact that there is a high unemployment rate among people with disabilities, Mr. Nurick began researching this epidemic.

High unemployment is strongly correlated to our society’s perception of people with disabilities as low expectations about employment for people with disabilities was a common theme and a huge barrier found in his research. Politically and culturally, we need to recognize the meaning of supported employment as 66.7% of people with disabilities want jobs. Some of the other barriers that stand in the way of supported employment are the learning environment designated for the disability community, lack of transportation options depending on where you live, degrading educational goals and benefits. However, Nurick emphasized the importance of instilling a high expectation for the disability workforce as a means to prepare younger individuals for the future. For those that have been plagued by the same experiences as Nurick, participants of this study offered some useful strategies to utilize in order to find a meaningful job; stay positive, work twice as hard as a means to prove yourself, seek education, network, volunteering and seek job coaches that are congruent with your goals. In closing, Nurick’s recommendation is connected to the National Council on Disability standpoint on employment as he asserted the importance of finding a better way to connect people with disabilities to applicable resources as many are easily discouraged by the system.

During this time, Gary made connections with participants in the workshop entitled, “A Productive Partnership Between DD Councils and Statewide Self-Advocacy Organizations”, presented by representatives from Wisconsin; Barry Kress, Lynn Carus, Fil Clissa, Cindy Bentley, and Mary Clare Carlson. Gary enjoyed this presentation as he was able to share his experiences working with the NJ Council on Developmental Disabilities. Furthermore, he said that it was interesting to compare and contrast the types of legislation that DD networks push in their own states. For the remainder of the day, Gary wrapped up the conference by attending, “The Dating Game”, which was a recreation of a classic television game show. Gary was amused by this workshop as it provided a relaxing break in the day amidst all the chaos. To conclude, Gary attended, “The International Convention on the Rights of Persons with Disabilities: What Americans with Disabilities Should Know”, presented by David Morrisey. Gary enjoyed this presentation and hopes that the United States ratifies this treaty immediately as it is long overdue.

Due to a conversation from the night before, George Garcia, from the Southwest Institute for Families and Children, encouraged Gillian to attend his workshop, entitled, “Supporting People in Empowerment, Advocacy, and Knowledge! Arizona Project”. George was accompanied by his co-workers Teresa Moore, and Juliana Huerena during this presentation. The presenters introduced a social media website called Yakkit (; created specifically for self-advocacy organizations a means to communicate with others all over the nation. Users can communicate with others by creating a YAKKIT profile, and sending videos back and forth to friends. Furthermore, SPEAK!, the Southwest Institute’s advocacy function/curriculum, provides resources and training for organizations on YAKKIT for the following topics: organizational structure, resource development, retention and building community. This resource is suitable for any self-advocacy group looking to expand their supporter base, make new connections, and refine the output of their group in order to gain power.

For the third workshop, Gillian was able to visit two within one hour as the first workshop ended very early. Initially, Gillian attended “Forging on with a Statewide Self-Advocacy Organization: Lessons from Virginia”, presented by Shawn Kirk from Virginia Advocates United Leading Together (VAULT) and Katherine Olson from The Arc of Virginia. This presentation featured the unique development of two self-advocacy organizations in Virginia. For instance, VAULT banded together through a two day forum in April 2010 in which 45 individuals, representing nine different disability groups throughout the state of Virginia, attended. The result of this forum produced a “Common Ground Quilt” that entailed the four priorities of each representative’s mission; awareness, housing, employment and transportation. Ultimately, these four priorities were the basis for VAULT’s mission statement as it ignited the process to formulate this group.

In turn, Voices of Virginia is a compilation of seven local peer advocacy groups managed by and for Virginia citizens with intellectual and developmental disabilities. The U.S. Department of Justice can be credited for the formulation of this group as it asked the Arc of Virginia to organize a meeting with self-advocacy groups across the state as a means to identify the issues within disability current affairs. Through their interaction with U.S. Department of Justice attorneys and state officials from Virginia, Voices of Virginia largely contributed to a major settlement agreement between the U.S. Department of Justice and the Commonwealth of Virginia on August 23, 2012. This settlement signified a historic transformation for services as Virginia is widely known for its reliance on large state institutions. This agreement produced an array of integrated and community based supports such as the distribution of 4,000 Medicaid waivers, family supports for 1,000 people on waiting lists, crisis system, integrated housing, case management, special populations, the implementation of quality assurance mechanisms, and a plan to close 4 of the 5 institutions.

As this brief workshop came to a close, Gillian met up with Sidney at a workshop entitled, “Take Your Legislator to Work: An Awareness Campaign”, presented by Fil Clissa and Andrew Gerbitz. This workshop highlighted the positive benefits of meaningful employment coupled with competitive wages by sharing the stories featured in Wisconsin’s Board for People with Developmental Disabilities 2011 campaign that was designated for legislators, employers and the community in Wisconsin. Some of the people who were featured in the campaign were present for this workshop as an opportunity for the audience to learn more about their achievements. For instance, Andrew Gerbitz, one of the presenters, was able to describe in thorough detail about his role at the YMCA in Oconomowoc as a child care provider. The audience also had an opportunity to meet with Lisa Gilson who owns a successful paper-shredding business with her mother. The presenters encouraged the audience to recreate this campaign in their own home states if the initiative hasn’t already been pursued. Sidney and Gillian hope that self-advocates who decide to create their own version of this campaign will be heard by not only their state legislators, but by everyone across the country. The New American Movement will be looking for ways to promote supported employment environments in the future as an outreach tool.

The most rewarding aspect of the SABE Conference was our opportunity to influence advocacy at the national level through our open letter to Commissioner Sharon Lewis. This initiative strengthened NAM’s influence as we seek to catalyze the activism of others on a broader scale. Through Sidney and Gary’s election, we will be able to introduce our community organizing techniques at the regional/national level and refine them as a result of building connections and learning from others. It will provide us with further opportunities to consistently engage with other self-advocates as a means to identify leaders and build the movement we’ve all been waiting for.

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