The Alliance News. Vision. Mission. In This Issue. Don t Delay...Register Today for the Fall Regional Training

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1 Issue 24 September 2013 In This Issue Vision Our vision is for self-advocates to work together to get the support we need to live the life we want in the community. Mission Our mission is to speak up for ourselves and each other while working together to make changes in our communities and in Illinois. Travels with the Alliance page 2 Obama Care page 3 This & That page 4 Take Action page 5 Alliance Sign Up page 6 R-E-S-P-E-C-T page 11 Regional Training page 12 Registration Don t Delay...Register Today for the Fall Regional Training Join The Alliance for the Fall 2013 Regional Training and learn about Changes to the DHS/DDD website Workforce Incentive Program Being a leader on a committee or workgroup The Regional Training will be held in September in Springfield and Joliet. It is free and open to all self-advocacy groups. There is a limit of fifty (50) participants at each location so don t delay...register today! See the Registration Form on page 12 for more information! The Alliance is proud to be an Initiative of the Illinois Council on Developmental Disabilities Illinois Self-Advocacy Alliance PO Box Urbana, IL info@selfadvocacyalliance.org Website: Find us on Facebook at Illinois Self-Advocacy Alliance

2 2 Travels with The Alliance! Hi folks! I hope you have enjoyed the summer! I can t believe it s almost over! In mid-august, Krescene Beck and I visited Advocates for Change at Cornerstone Services in Joliet, IL. We gave a presentation on what self-advocate involvement looks like, looking at the ways in which self-advocates can get involved and most importantly, to have fun! Megan Norlin and Krescene gave the same presentation to People 1st of Illinois Valley at Horizon House in Peru, IL toward the end of the month (check out Megan s article about the presentation on page 11). While Krescene and I were with Advocates for Change, we were thrilled to accept the Watchman on the Wall Award on behalf of The Alliance. The award says, As the watchmen standing on the walls of ancient cities, keeping the city informed and forewarned of any danger, the Alliance watches and informs, striving to equip and empower all people with disabilities with the knowledge and voice they need to change their lives. It was a great feeling to know that what The Alliance is doing is making a difference. Thank you Advocates for Change for presenting us with the Watchman on the Wall Award! As always, I send out my love and hope to see you at our fall training and at SUSO! Tara Wickey, Community Organizer

3 3 Obama Care in Illinois Obama Care is about to roll out here in Illinois. This is of particular interest to people with disabilities and their families. Obama Care has tremendous benefits for all of us and the Health Insurance Marketplace will be an important resource for you. The Health Insurance Marketplace will open on October 1, 2013, with health care coverage purchased through the Marketplace beginning January 1, The federal website devoted to information about the Marketplace is This website provides a vast array of general information right now about the Marketplace and how it will work. There is also a call center available now to help answer questions. Call center assistance is available 24/7 at or (TTY). There will be many resources available for assistance with the Health Insurance Markeplace. Navigators will serve as an in-person resource for Americans who want additional assistance in shopping for and enrolling in plans in the Health Insurance Marketplace this fall. A Navigator is an individual or organization that's trained and able to help consumers, small businesses, and their employees as they look for health coverage options through the Marketplace, including completing eligibility and enrollment forms. These individuals and organizations are required to be unbiased. Their services are free to consumers. Below are the Illinois recipients of Navigator grants, announced on August 15, 2013: Genesis Health System Sinai Health System Du County Health Department Southern Illinois Healthcare Foundation A Safe Haven Foundation Mercy Hospital and Medical Center The Puerto Rican Cultural Center, Inc. Illinois College of Optometry VNA Health Care The East Los Angeles Community Union National Council of Urban Indian Health* If you re interested in learning more about how individuals with disabilities will be impacted by the Health Insurance Marketplace and other issues related to changes in our health care system, plan to attend our October 10, 2013 Update on Health Care Reform for Children and Adults with Special Needs. Our agenda includes: - HFS - Medicaid Reform in Illinois and Impact on Children and Adults with Special Needs -presented by Sharron D. Matthews, Assistant Director, Illinois Department of Healthcare and Family Services - Update on the SMART Act and the Affordable Care Act - Focusing on Special Populations - presented by Stephanie Altman, J.D., Program and Policy Director, Health and Disability Advocates continued on page 4

4 4 This & That The Alliance is Looking for You! We are looking for self-advocacy groups who want to be a part of The Alliance to - continue growing our self-advocacy network - support local groups by sharing ideas, providing information, learning together - bring information to our communities - working on state changes together and within our local groups Check out the Member Sign Up Form on pages 6 8 to learn more. Plan to attend the Speak Up and Speak Out Summit November 5 6, 2013 Hilton Springfield Springfield, IL Financial assistance is available. Find out more by logging on to Continued from page 3 - The Private Health Insurance Marketplace and Individuals with Special Needs - presented by Charles W. Watkins, Regional Outreach Coordinator, Illinois Health Insurance Marketplace, Office of the Governor - Who Can Help with Health Care Reform Options? - presented by Kathy Chan, Associate Director/ Policy Director, Illinois, Maternal and Child Health Coalition - Disability Advocacy and Health Care Reform in Illinois - presented by Tony Paulauski, Executive Director, The Arc of Illinois For more details or to register, please go to MMUNICATING WITH CHILDREN WITH

5 5 Take Action TAKE ACTION / Rebalancing of the Developmental Disability System Close Warren G. Murray Developmental Center The U.S. Federal Court issued a temporary restraining order that stops the transition of Murray Developmental Center residents moving into the community; a court hearing is scheduled for September 9th. Murray Center is scheduled to close at the end of October but this court ruling could stop the closure. It is time to take action and show our support for self-advocates living in the community by closing state institutions through: Signing a petition at link to petition. Sharing the petition with friends, family and colleagues helps to spread the message of community for all. Writing a letter to Judge Marvin E. Aspen in support of self-advocates living in the community by CLOSING Murray Developmental Center. We need to A LOT of letters from around the state that offers a broad perspective from self-advocates, guardians, research analysts, industry experts, medical professionals and community leaders. Letters will be gathered and presented to the Judge Aspen in court on September 9, Please address the letter to Judge Marvin E. Aspen Everett McKinley Dirksen United States Courthouse Courtroom 2568/Chambers South Dearborn Street Chicago, IL Send all letters to the Going Home campaign office: GoingHome@morrealepublicaffairs.com Fax: Mail: 8770 West Bryn Mawr Avenue Suite 1300 Chicago, IL Please reach out to Michelle Arnold with any questions. She can be reached at or michelle@morrealepublicaffairsgroup.com.

6 6 Alliance Group Sign - Up Form (page 1) Yes, our self-advocacy group wants to join The Alliance! Group Name City Number of Members Meeting time/day Does your group have a mission/vision statement? Yes No If yes, what is the mission/vision statement? What are your group s goals? Group Website/FB age Self-Advocate Key Contact Leader (self-advocate who will be responsible for sharing information between the group and The Alliance) Name Phone Address Preferred Method of Contact (phone, , US mail) Self-Advocate Key Contact Leader (self-advocate who will be responsible for sharing information between the group and The Alliance) Name Phone Address Preferred Method of Contact (phone, , US mail) Group Advisor/Facilitator Name Phone

7 Alliance Group Sign - Up Form (page 2) According to Illinois Self-Advocacy Alliance s (The Alliance) Bylaws, each member group shall be eligible to elect one (1) self-advocate representative to serve on the Board of Directors (Section 2 Rights of Members). Does your group wish to elect a self-advocate representative to serve on The Alliance s Board of Directors? Yes No For more information on The Alliance s Board of Directors, please contact Krescene Beck at or krescenebeck@gmail.com. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 7 The Alliance periodically receives requests from The Department of Human Services Division of Developmental Disabilities (DHS DDD) and other advocacy entities for self-advocates to participate in meetings and on committees. Is there a self-advocate or self-advocates from your self-advocacy group who would be interested in participating in this type of self-advocacy? Yes No If yes, please write the name(s) and best method of contact. Self-Advocate Preferred Method of Contact Self-Advocate Self-Advocate Preferred Method of Contact Preferred Method of Contact Self-Advocate Preferred Method of Contact

8 8 Alliance Group Sign - Up Form (page 3) Alliance Working Agreement As a member of The Alliance, (insert group name here) agrees to the following: Work together to get the support we need to live the life we want in the community; Speak up for ourselves and each other and work together to make changes in our communities and in Illinois; Work together to make life better in our communities and to make services better in our state; and Work with other groups from around the state to speak together with one loud voice. We can do more when we all work together! Member Groups of The Alliance will also agree to Identify two (2) key self-advocate contact leaders responsible for sharing information between the group/organization and The Alliance; Participate in a minimum of six (6) webinars per year; Attend a minimum of one (1) event sponsored by The Alliance per year; and Organize and execute one (1) local/community action per year based on self-advocate selected statewide issue. We support The Alliance Vision, Mission, and Goals. We agree to share what we are doing with The Alliance and participate in statewide actions. We understand that The Alliance will also support us in our local efforts. Group Representative Signature Group Facilitator/Advisor Signature Alliance Representative Signature

9 9 Learning Opportunity The Autism Program at the University of Illinois Champaign/ Urbana proudly presents Promoting Mental Health in Children & Adults with Autism, Intellectual/Development Disabilities or other Special Needs Presented by Barbara T. Doyle, MS, Autism Specialist Champaign Public Library 200 W. Green St., Champaign, IL October 18, :30 am-3:30 pm (lunch included) Registration begins at 9:00 am (Pre-registration is required) (217) Cost: $15 can be paid on site, day of workshop cash or check made to The Autism Program/UIUC 5 CPDUs This workshop is designed to help participants learn how to promote mental health in children and adults with autism, intellectual/developmental disabilities, or other special needs. Topics in the workshop will include: - Identification of qualities that lead to mental health - Teaching and promoting everyday mental health skills - - Strategies to avoid harming mental health - The role of Positive Affirmations in mentally healthy thinking - The importance of learning how to Quiet the Mind - Teaching children and adults how to think in shades of gray - Strategies to model and promote safe emotional expression - Social Connectedness as an asset in our mentally healthy lives - The importance of Self Knowledge for mental health and Self Advocacy

10 10 Get Involved! Working to ensure that everyone has the opportunity to serve The National Service Inclusion Project (NSIP) is a Corporation for National and Community Service (CNCS) training and technical assistance provider. Through comprehensive training, technical assistance, and product dissemination, NSIP strives to ensure meaningful service experiences for all Americans, regardless of their abilities. Learn more by visiting The Convention on the Rights of Persons with Disabilities (CRPD) is an international disability treaty that was inspired by U.S. leadership in recognizing the rights of people with disabilities. The CRPD is a vital framework for creating legislation and policies around the world that embrace the rights and dignity of all people with disabilities. The Americans with Disabilities Act (ADA) was the model for the CRPD, which values of independence and respect and concept of reasonable accommodation are echoed throughout the treaty. The United States signed the CRPD in On December 4, 2012 the United States Senate considered the ratification of the CRPD but fell 5 votes short of the super-majority vote required (ratification of a treaty requires a 2/3 vote of the U.S. Senate). The media coverage of the Senate s failure to ratify the disability treaty has been overwhelming and the CRPD s Senate leaders, the disability community and its allies remain committed to bringing the treaty up in the 113 th Congress. Please visit to learn more about the treaty and to get the latest updates on the ratification process in the United States!

11 11 R-E-S-P-E-C-T! R-E-S-P-E-C-T: How To Be More Involved In Your Self-Advocacy Group On August 26 th, Krescene and I went to People First of Illinois Valley s advocacy group meeting to talk about respect. Now, don t misunderstand us, we know the folks of People First know how to respect each other well, but it s never a bad idea to remind ourselves what the word RESPECT means, so we decided to use it to help people figure out how to help themselves and their fellow self-advocates be the best self-advocates they can be. Here s how we broke it down: R = Reaching Our Potential: Do we know our gifts and talents, and how to use them? E = Empowerment: Empowerment is about giving ourselves permission to speak up and speak out, and figuring out how and when to do it. S = Support: What support do you need to be more involved in our lives? How do we get it? Who knows about it? P = Presence: How do we let people know we are here? E = Equality: Do we have equal opportunity to be part of a team? C = Comfort, Capacity and Confidence: Do we feel safe and comfortable in our lives, or at our group meetings? Do each of us have chances to work up to our full potential? T = Team: Do we work as part of a team, and help each other achieve goals? These are just the basics of the presentation. We would be thrilled to share the rest with anyone else who wanted to know more. For now, though, we encourage you to go over these 7 points, and think about how they could apply to your own life, both as an individual advocate and with your work in your self advocacy groups. I know People First surely has. They are in the midst of planning new fundraiser, and hope to begin reaching out to schools and other people who might be able to help them with their advocacy work. A few folks also hope to find other causes to help with in their community. It was wonderful getting to know all the advocates of People First of Illinois Valley a little bit more. I know Krescene and I can t wait to see what they do next. Keep up the good work guys! Feel free to contact us with any questions. Keep Advocating! Megan Norlin, Local Group Coordinator The Alliance Staff Contact Information Terah Green, State Action Coordinator terahgreen@ymail.com Tara Wickey, Community Organizer tara.advocacy@gmail.com Megan Norlin, Local Group Coordinator hottwheelz702@yahoo.com Krescene Beck, Program Coordinator krescenebeck@gmail.com

12 12 Fall 2013 Regional Training Registration Wednesday, September 18, 2012 Wednesday, September 25, am 2pm 10am 2pm Registration Begins at 9.30am Registration Begins at 9.30am First United Methodist Church Joliet Public Library ~ Black Road Branch 2941 S. Koke Mill Road 3395 Black Road Springfield, IL Joliet, IL Please circle training location you will be attending. Space is limited to 50 participants at each location. Each agency/self-advocacy group may register up to a total of six (6) participants (self-advocates and support staff combined). Number attending: Self-Advocates Support People TOTAL Agency/Self-Advocacy Group Name Names of Self-Advocates (please print clearly): Names of Support People (please print clearly): Contact Person Name Phone Accommodation Requests Sign language interpreter Dietary requirements please specify (ie, Gluten Free, Dental Soft, No Styrofoam, etc.). NOTE: Any physician-prescribed dietary requirements will be accommodated; food preferences will not be honored. Other requests please specify Please register by Friday, September 6, 2013 by mail, , or fax to: Krescene Beck 6754 Middlegate Lane Glen Carbon, IL krescenebeck@gmail.com Fax: