G O V E R N O R ' S C O U N C I L O N D E V E L O P M E N TA L D I S A B I L I T I E S AutumWn 2i0n03ter 2004 w w w . gwcwdwd.gc. dodr.ogrg A quarterly magazine that focuses on developmental disability issues in Georgia Making A DIFFERENCE Volume 4 Issue 3 Winter 2004 A quarterly magazine of the Governor's Council on Developmental Disabilities. The Governor's Council on Developmental Disabilities collaborates with Georgia's citizens, public and private advocacy organizations and policymakers to positively influence public policies that enhance the quality of life for people with disabilities and their families. The Council provides this through education and advocacy activities, program implementation, funding, and public policy analysis and research. Lynnette Bragg Chairperson lynnettebragg@aol.com Eric E. Jacobson Executive Director eejacobson@dhr.state.ga.us 2 Peachtree Street NW, Suite 8-210 Atlanta, GA 30303-3142 Voice (404) 657-2126 Fax (404) 657-2132 Toll free (888) 275-4233 TDD (404) 657-2133 www.gcdd.org Yao Seidu Editor in Chief yaseidu@dhr.state.ga.us Janice Nodvin Project Manager May South, Inc. jnodvin@mayinstitute.org Renita Mathis Managing Editor Audrey Arthur Susan Berch Kathleen Harris Pat Nobbie David Pollan Jody Steinberg Contributing Writers Alex Jones Photography - Cover Feature Keith Middleton Cartoonist YoYo Design Studio - Lora Ho Design & Layout From the Executive Director Let's Unify With One Powerful Message We at the Governor's Council on Developmental Disabilities wish everyone a prosperous and successful New Year, and welcome to 2004, a year of challenge and enormous potential. It is with a fair amount of pride that we have been able to continue publishing Making A Difference magazine in its current form for four years. We created this publication after hearing you say there was a critical need for information about disability issues and activities in our state and around the country. We have attempted to fill that void. We think the magazine has become a forum for people to learn about issues that should be the driving force in public policy and systems change for people with disabilities in Georgia. The council hopes that Making A Difference is a useful tool for you in your efforts to advocate for improved services in Georgia. It always comes down to that advocacy. This magazine is just one tool that you can use to help change the policies of this state. Without accurate information about the issues and what is possible, none of us can help create an atmosphere for change. Please e-mail me personally at eejacobson@dhr.state.ga.us, and let me know your opinion about what's good or bad about our magazine. Your input is important in helping us to know where we need to improve and what new direction we can explore. This edition of Making A Difference is your guide to the 2004 legislative session. Prior to previous sessions, I felt comfortable asking you to advocate for increased budgets and new programs. But, today we live in a very different economic world. For the second consecutive year, we face serious budget shortfalls. Many of us in the advocacy community and the broarder Disability Movement here in Georgia believe that a powerful message can be sent to the state's chief executive and others concerning the direction we believe our state needs to be headed. To strengthen our advocacy efforts, we need to support and join coalitions who speak for all of us, like the Partnership for Community Living (www.gcdd.org/partnership). Partnerships can be a unifying voice for all of us: people with disabilities, family members, advocates, service providers and direct-care professionals. Finally, I want to encourage you not to wait for someone else to do any of this. In June 2004, there will be a national conference focusing on recruiting and developing new leadership, getting young people more involved in our advocacy efforts. Our leadership is aging including this writer. We have not done a very good job of recruiting others, especially young people to join our movement. We all commend and thank our past and present-day advocacy leaders in our state but now is the time to identify, educate and train others who are willing to take our history, efforts and movement to the next level. Just like we need to find new finances to fund existing needs, we need to find new leadership to lead us tomorrow. I am reminded of Nelson Mandela who says, "Our deepest fear is not that we're inadequate, but that we are powerful." You are the reason there is a powerful force in Georgia and across the country. Now is the time to grow our movement and take our struggle to the next level. Let's all have a good New Year. Eric E. Jacobson Executive Director, GCDD 2 Making A DIFFERENCE Making A DIFFERENCE Table Of Contents Volume 4, Issue 3 Winter 2004 Features 16 State's Top Leaders Discuss Building Advocacy Relationships Speaker of the House Terry Coleman and President Pro Tem Eric Johnson, share thoughts on how to build relationships with legislators. 10 People Who Make A Difference Share Their Stories From around the state, advocates offer tales of triumph and determination. 13 Legislative Agenda Calls for Belt Tightening for Everyone As legislators prepare to slash budgets, advocates must prepare to make their voices heard. In Each Issue 4 Letters to the Editor 20 Sponsorships 26 Resources 27 Calendar 16 Departments 2 From the Executive Director Let's unify with one powerful message to be sent to state leaders concerning the direction we should be headed. 6 News & Events SOS Kids mobilizes more than 200 advocates at the Capitol to call attention to proposed cuts that affect children with disabilities. 22 Medical Update CDC's Jos Cordero crusades to reduce birth defects and developmental disabilities. 23 Vintage Photos How well can you play photo match? Test your matching skills. 24 Hablmos Espaol Un 17% de los nios de EE.UU. menores de 18 aos de edad tienen una discapacidad del desarrollo. 24 Straight Talk Even though Susan Berch was diagnosed with having a thyroid condition that left her with a learning disability, she embraces an independent lifestyle. 7 Consumer Review Check out the latest technology for people with disabilities. 10 8 Opinions: Point/Counterpoint 6 When people with disabilities have strong support systems, is a court- appointed guardian necessary? Winter 2004 3 Letters to the Editor Keep Up the Good Work It is a fact that effective advocacy relies largely on the actual resources that are made available to help make a real difference in the lives of people with disabilities. The Making A Difference magazine will most assuredly benefit all communities in the state and open doors for people who may need some type of support that never knew was available to them. I graciously applaud your efforts and offer my assistance in any way that may be beneficial to you that will impact lives today and all the days ahead. Annette Bowling, Executive Director Albany Advocacy Resource Center, Inc. A Gem! I think you have a gem in Making A Difference magazine. I have seen the growth of the magazine since it first began years ago. Over the course of time, I have been involved in the magazine as a medical consultant, an author of small pieces, and have been on the Editorial Advisory Board. I know the publication provides information and insight to its readers, which span the professional, political and family divide. The magazine is of high quality both in its content and its appearance. Leslie Rubin, MD Developmental Pediatrician Emory University School of Medicine Useful Information for Family Making A Difference magazine is an important and informative resource for our parent members. We are happy to be able to provide it to them at our family activities. When answering questions regarding developmental disabilities, I constantly refer to the current or past issues for information. We would like to include copies in the packet of information we provide to new parents. Sue Joe, Executive Director Down Syndrome Association of Atlanta Informative Resource We have continued to enjoy a strong working relationship with the magazine's editorial staff and look forward to helping connect this magazine to the wonderful stories from people who we serve, including Partners in Policymaking graduates throughout the state. Making A Difference has been an excellent source of information for our agency's staff and the people we serve within our varied programs. Dave Blanchard, Director of Public Policy Atlanta Alliance on Developmental Disabilities An Eye Opening Experience As the state director of AARP Georgia, I have been pleased to see how our interests on behalf of Georgians have often intersected with those of the Governor's Council on Developmental Disabilities and the Unlock the Waiting Lists! Campaign. The Making a Difference Discovery Tour was an eye-opening experience which increased my interest in strengthening ties between our organizations. I think Making A Difference magazine is informative and helpful for keeping up with some of the issues that our constituents share. Warren F. Brown, Interim State Director AARP Georgia 4 Committed to the Community Like the GCDD, disABILITY LINK is committed to promoting the rights of all people with disabilities. We believe that all citizens, including those with disabilities, deserve the right to be independent, make decisions for themselves, have access to their community, and to achieve goals in life. Making A Difference magazine has done an increasingly good job of informing Georgians of issues of disability, and increasing advocacy and awareness of the issues that affect individuals with disabilities. We hope to strengthen a relationship with the Georgia's Centers for Independent Living in which we all strive to increase opportunities for Georgians with disabilities. Rebecca Ramage-Tuttle, Executive Director disABILITY LINK How To Reach Us Making A Difference Letters To The Editor Letters should include the writer's full name, address, phone number, and may be edited for purpose of clarity and space. Email us at: makingadifference@gcdd.org Call us at: (404) 657-2127 Fax us at: (404) 657-2132 Or you can visit us at: 2 Peachtree Street, N.W., Suite 8-210, Atlanta, GA 30303-3142 Sponsorship: For sponsorship opportunities contact: Janice Nodvin at May South, Inc. (770) 956-8511, ext. 207 or jnodvin@mayinstitute.org Subscriptions / Back Issues Visit us at our Web site: www.gcdd.org or call us: (404) 657-2126 It is the policy of Making A Difference to publish readers' comments. Contents do not necessarily reflect the opinions of GCDD, the editors or state government. Making A DIFFERENCE Tour Photos More than 55 business, community and civic leaders joined elected officials and the working media for a half-day tour that highlights "best practice" in disability. Billed as the 3rd Annual Making A Difference Discovery Tour, hosted by the Governor's Council on Developmental Disabilities, the busy executives were briefed and viewed first-hand inclusive education, assisted technology, vocational and rehabilitative training as well as accessible housing. Debbie Loeb, principal, DeKalb's Montgomery Elementary School and Angela Leissa, principal, Huntley Hills ES, discussed and demonstrated the latest techniques and procedures in inclusive classrooms to tour participants. GCDD Making A Difference Discovery Tour Beginning at the National Martin Luther King Center, participants heard an overview of disability issues and concerns with comparisons between the Civil Rights Movement and the Disability Rights Movement. Visits to DeKalb County Montgomery Elementary School and Huntley Hills Elementary School demonstrated best practice inclusive classrooms to tour participants. At the Touch of the Future/ReBoot facilities, tour participants viewed computers and cell phones being reconditioned and distributed to Georgians around the state with disabilities.Accessible housing and homes with "visit-ability" features were toured by participants at the tour's final stop, East Lake Commons. At the Touch of the Future/ReBoot facilities in DeKalb county, tour participants viewed computers and cell phones being reconditioned and distributed to Georgians around the state with disabilities. Accessible housing and homes with "visit-ability" features were toured by participants at the tour's final stop, East Lake Commons. Winter 2004 5 News & Events MOTHERS ORGANIZE CAPITOL RALLY Two mothers of children with disabilities came together and planned a November rally at the state capitol to protest proposed budget cuts to programs that impact Georgia's children who have disabilities. "We have received overwhelming support since the rally, even getting support letters from various legislators, and Gov. Perdue," says Tanya McConnell, parent advocate and co-founder of SOS Kids. "But, it is important that we continue to let our voices be heard by writing letters, sending e-mails, and calling those who sit under the Gold Dome." Visit the Web sites at www.congress.org or www.vote-smart.org YODER NEW AADD CHIEF Mary Yoder has been named director of the Atlanta Alliance on Developmental Disabilities. Ms. Yoder replaces Tom Graf, who after 30 years of service is retiring. AADD is an organization that works to build communities of support, acceptance, and opportunity for children, adults, and families living with developmental disabilities. Visit the Web sites at www.aadd.org BUDGET COALITION A PART OF ADVOCACY For organizations that consider themselves proponents for people with disabilities, it is advantageous to be listed in the upcoming Budget Coalition list. As a member of the Budget Coalition, your organization will be listed on all advocacy material during the legislative session. Membership will cost $100 per year and is open to groups only, but individuals can belong to one or more consortia. Budget Coalition founding members include: National Mental Health Association of Georgia, Georgia Council on Substance Abuse, Service Providers Association for Developmental Disabilities, or SPADD, The Arc of Georgia, the Governor's Council on Developmental Disabilities, Atlanta Alliance on Developmental Disabilities,Georgia Parent Support Network, Georgia Mental Health Services Coalition, Georgia Association for Homes and Services for Children and GATES. For information, call Dawn A. Randolph at (678) 471-3804, or e-mail at democracydawning@comcast.net. OVER 1300 EXPECTED AT D DAY RALLY Disability Day at the Capitol 2003 was a great success. Now we are getting ready for D Day 2004! Mark your calendar for Thursday, Feb. 26, 2004. Last March, individuals with disabilities, family members, and advocates from across the state united in the name of advocacy at the largest crowd in the history of Disability Day at the Capitol. Connections were formed, friendships established and most importantly, the capacity crowd convened to send a powerful message to their legislators, "Georgians with disabilities vote, and we count." We are doing it again on Feb. 26, 2004. Individuals with disabilities and their families will have an opportunity to educate their legislators as they join us for our annual barbecue luncheon. Contact your local legislator to ask that they put Disability Day at the Capitol 2004 on their calendar. For more information, visit the Web site: www.gcdd.org/publicpolicy/dday/index.htm INCLUSION CONFERENCE SLATED FOR MARCH Better All Together: Inclusion Works! on March 17-20, 2004, celebrates the past five conferences and includes topics about inclusion from preschool to young schoolage children to after highschool graduation to adulthood. Many resource people from Georgia and around the U.S. will present a variety of sessions addressing topics such as early childhood inclusion, school inclusion, curriculum modifications, supported living, supported employment, community building, teaching strategies, and person-centered planning For more information, visit the Web site: www.gactr.uga.edu/conferences/ 2004/Mar/17/together.phtml KNOWLEDGE IS POWER TAKE A LEAP 2004 Regional Conference on Down Syndrome and Other Developmental Disabilities, Feb. 27-29, 2004. Guest speakers include Julie Beckett, mother of the Medicaid Deeming Waiver, and other national speakers on Down syndrome and developmental disabilities. For more information, visit the Web sites: www.down-syndromeatlanta.org www.maysouth.org 6 Making A DIFFERENCE In this department, we feature products and services that will assist you and your family in an independent life style and reaching the potential of all Georgians. In this issue, we highlight various assistive technology services. Dunamis Dunamis team has more than 30 years of experience designing computer-based learning activities for people with disabilities. One of the company's great life-skills products is Toward Independence, a software program on one CD-ROM. Learn to follow a picture schedule with Plan Your Day. This program, included in the Picture Cue Dictionary, lets you set times for and sequence student activities. Users can study the schedule at the computer or follow the printout during the day. Shopping Smart, also found in Picture Cue Dictionary, makes shopping easier for low-level readers by providing a picture-based shopping list that students can follow in the store or study at the computer before they go out. Review money handling skills with Spending Money, part of the Dollars and Cents program. You can choose between an exercise or shopping option. When shopping, students cruise the "money mall" looking for items on their computer-generated shopping lists. Explore eight neighborhood streets in Looking for Community Words. Students can learn vocabulary on their own, or search for specific words on their word list. Learn essential vocabulary with WordWise Community. A unique feature encourages students to record their own pronunciations of 80 important words and compare them to the computer's speech. The program includes a multiple choice, speech recording and print option. Visit Dunamis at www.dunamisinc.com, or call ((770) 279-1144. Aurora Aurora for Windows -- Aurora Systems Inc. provides software to help individuals with learning disabilities and people who require augmentative communication. The company has provided products for Windows and DOS throughout North America and the world since 1989. Aurora for Windows helps people with learning disabili- Consumer Review ties and dyslexia write and spell better and helps people with physical disabilities communicate with the people around them. Aurora Talk is the ultimate conversation tool. You can assign frequently used phrases to function keys for instant spoken communication or type whatever you want to say. The program allows organization of your phrases into categories for home, work or school, and can provide quick searches on what you have spoken before, and say it again easily. Aurora products operate transparently with all your favorite applications including e-mail, Web browsers, word processors and more on Windows 3.1, 95, 98, Me, NT 4.0, 2000 and XP. For detailed information, take their online tour at www.aurorasystems.com/to ur.html. Or call (604) 2916310; toll free (888) 2901133. Freedom Scientific Florida-based Freedom Scientific is an HP accessibility partner that develops and manufactures technology products that enable people who are blind or have low vision to work on the same competitive level with those who are sighted. Their industry-leading products include JAWS for Windows, the world's bestselling screen-reading software, and Braille 'n Speak, a note-taking device with Braille key input and speech or data output, as well as other Braille-related products. This 175-employee company also creates products for special education classes and for people with learning disabilities. Visit their Web site at www.freedomscientific.com, or call (727) 803-8000, ext. 1155. DynaVox Systems DynaVox Systems LLC is the world's-largest manufacturer of advanced augmentative communication solutions, and for more than 16 years has been committed to helping people with disabilities live fuller lives. Their products assist thousands of individuals around the world with conquering communication barriers and excelling in the classroom, workplace and the community. Brands from DynaVox Systems include DynaVox 3100, DynaMyte 3100, Dynamo, DynaVox Software for Mac and Windows computers and DynaSyms. Visit their Web site at www.dynavoxsys.com Winter 2004 7 POINT Make Guardianship Necessary By David Pollan P arents of adults with a disability are often confronted with the subject of guardianship and whether or not they should become their child's legal guardian. Guardianship is the legal proceeding for the appointment of a legal representative to someone who either lacks decision-making capacity, or is simply unable to communicate his or her decisions because of a mental or physical disability. Parents and advocates of people with disabilities should know when and under what circumstances a guardianship is legally advisable, so they may prevent potentially abusive situations where rights of the disabled individual are unnecessarily removed. A guardianship is usually initiated either through the probate or family courts depending on applicable state law so that a legal representative can be appointed to an "incapacitated"person. Since guardianship removes the rights of the person with a disability or "liberty interests" and gives someone else the authority to act on his or her behalf, it should only be pursued as a last resort and narrowly tailored to preserve rights to the greatest extent possible in light of the person's limitations and abilities. Liberty interests which are usually removed from the person with a disability by the court include: s the right to contract marriage; s the power to enter into contracts; s the power to consent or refuse medical treatment; s the power to decide where to live; s and management of monies and property. Notwithstanding the appointment of a legal guardian, in every guardianship, the person with a disability always maintains the right: s to a guardian who will act in his or her best interests and whose affairs do not create a conflict of interest; s to a guardian who is reasonably them. In such an instance, the court accessible to him or to her; overseeing the administration of the s to have his or her property used to estate may require the appointment of a provide for his or her support, care, legal guardian to protect the financial education, and well being; and interests of the disabled beneficiary. In the s to communicate freely and privately case of the noncompetent disabled life with others. insurance beneficiary, the life insurance Some courts have clerks who will company may require the appointment screen a guardianship of a legal guardian as petition before it can be filed to ensure that Opinions a condition of paying out the life-insurance alternatives to the benefits. guardianship have Doctors, hospitals, been explored. A and other healthcare common alternative providers may also to a guardianship recommend guardian- might include the ship for a noncompe- existence of a power tent adult patient of attorney that the with a disability when person with a disability there is a dispute executed before the between the parents onset of their disability. regarding medical A power of attorney is a way that a person David Pollan decision making. In the absence of a patient can give another person authority to act on their behalf. Applicable state law determines the level of capacity or "competency" necessary to execute a power of attorney. David Paul Pollan is an Elder Law attorney in private practice in Atlanta. Mr. Pollan concentrates his practice in aging and disability law, including nursing home Medicaid planning, Medicaid SSI and estate planning for the individual with a disability, nursing home and assisted living issues, child to consent to medical treatment, state law usually permits a parent to consent to medical treatment on behalf of the noncompetent patient. However, if both parents are not in For many parents and adult guardianship, estate planning agreement as to a of an adult child with and probate litigation, and nursing proposed course of a disability who lack home and healthcare litigation. medical treatment, a capacity to execute legal guardian may be power of attorney or to otherwise necessary for the purpose of making authorize their parents to act on their medical decisions. behalf, there may be no alternative to Appropriate legal counsel and careful guardianship. For example, a person consideration of the rights, interests, with a disability may be left an inheritance and well being of persons with a disability from an estate or is the beneficiary of life should be fully explored before any insurance benefits and is either not decision is made for the appointment of competent to manage the inheritance or a legal guardian to ensure that a to execute power of attorney authorizing guardianship is in fact necessary. someone to manage the inheritance for 8 Making A DIFFERENCE counter POINT When Guardianship is Unnecessary By Kathleen Harris M y family members live out of state. Therefore, when I need help I go to my "other" family that is, my support circle of close friends. For instance, when I need help sorting out finances, I call Shirley, a CPA. When I'm wondering if I should see a doctor about some ailment, I call Sue, a nurse. If I need help with the computer, which I will never understand, I call on Roger, who is a "geek." It has never occurred to any of my friends to file a petition to have a court appoint them my guardian, so they can help me, despite the fact that I am "incompetent" to do those tasks without their help. Because I have such a strong support system, I don't need a court-appointed "guardian" to help me. Individuals with developmental disabilities, of course, have the same kind of support circles to help make decisions. We call this process person-centered planning through a support circle and consider it a key element of selfdetermination. We seek first to determine the individuals' desires for their own lives. If individuals don't understand what is being asked of them, their family or friends are there to make sure they get what they want and need. If they need medical treatment, help at their school IEP, or at the human services program that will help them find a place to live or get a job, their family members and others who make up their circle of support will help them arrange it. There are cases in which individuals do not have family or friends in their lives to act as a support circle. This calls for development of creative ways to bring community members into these individuals' lives so that over time, a support circle will develop, thus negating the need for guardianship. Imposing guardians on individuals may interfere with the support circle process. Person-centered planning through support circles assumes that all individuals, no matter how significant their disabili- ties, have preferences. They communi- decisions about their own lives. It should cate those preferences in some way, even be noted that under guardianship, it is if only through their behavior. Those possible that a person will lose funda- who know them most intimately are in mental civil rights. More than 30 states the best position to determine what the deny individuals under guardianship the individual needs, wants, or doesn't right to vote or marry. Many states give want. If there is a court-ordered guardians the right to have an individual guardian, there is a danger that one sterilized. Informally, guardians often person may be allowed to impose Opinions make decisions about what religious affilia- their decisions on the tion a person partici- individual without the pates in, who they can benefit of knowing visit or call, whether what the person they can date or desires, either directly engage in intimate or through the obser- relationships. These are vations of the support not necessarily legiti- circle. mate decisions for Some providers guardians to make, of services for individ- but they often make uals with develop- them not knowing they mental disabilities may exceed constitu- have requested that families or friends Kathleen Harris tional limits. When considering seek court-appointed guardianship because the providers believe it is a legal necessity. In fact, there is generally no legal requirement that a person Kathleen Harris is an attorney and social worker who specializes in guardianship issues. She was a member of the Michigan Supreme Court Task Force on Guardianship and has been active in working with the Michigan guardianship, ask yourself the following: If you needed help in making decisions about your life, would you rather have a court intervene by legally who is acting as a legislature in promoting guardianship removing your right to surrogate decision- reform. Kathleen is board president of make decisions and maker must be a the Center for Self-Determination, appointing one person guardian. Providers are and serves on several other boards of to make all decisions often not familiar disability organizations. She consults for you? Or, would with, and thus do not promote, the use of support circles and family consent policies, powers of attorneys, and other alternative surrogate decision- with non-profit organizations about disability issues, guardianship, and person-centered planning. Kathleen will be in Atlanta at the SelfDetermination Conference in April 2004. you want your family and friends to ask you what you want and have them consider all evidence of your preferences and needs, and make decisions making devices. with you? Our great- It is important that those who est task is to assure enough support for provide services for individuals examine individuals so that their preferences can their policies to assure they do not be honored, respected, and guardian- encourage unnecessary guardianships ship becomes unnecessary. that strip individuals of the right to make Winter 2004 9 People Who Make A ByAudreyArthur They are the vanguards, the emerging and upstarts of advocacy. They wield the fortitude and wherewithal to fight for people with disabilities. They are people with disabilities and the parents of people with disabilities, and they are just a select few we are featuring as this year's group of people who make a difference. Beauty Pageant Winner has a Powerful Voice for the People Kate Gainer has been an advocate all her life. But, after winning the Miss Wheelchair Georgia pageant in 1981, she fully realized the power one has to make a difference. "By winning the pageant there were a lot of doors opened for me that would not have been opened otherwise," says Gainer, who is now 55. After her pageant win, Gainer's work as an advocate took a new turn when she was invited to serve on several nonprofit boards and committees, including United Cerebral Palsy of Georgia and the Governor's Council on Developmental Disabilities. For the past two years, Gainer, who has athetoid cerebral palsy, has been an assistant project coordinator for Georgia Voices That Count, a learning and leadership development program for people with disabilities. Prior to that, she was a minority outreach coordinator for the Southeast Disability and Business Technical Assistance Center. She has also worked with the city of Atlanta as a disability-affairs coordinator. An Atlanta native, Gainer has used her marketing and advocacy skills on behalf of a number of issues. A pressing issue right now for Gainer is the need to keep people with disabilities from being unnecessarily placed in nursing homes, and the need to get Georgia's lawmakers and decision makers to embrace and enforce the Olmstead Decision. Also at the top of her list: stricter compliance by employers with the Americans with Disabilities Act. "Even though rehabilita- tion has been charged with working with people with severe disabilities, it is still easier to tell someone they are unemployable or we can't help you, than to really be innovative," says Gainer, a mother and grandmother. "It's easier to not fund the Equal Employment Opportunity Commission, than to have investigators available to make companies comply with ADA." So, what keeps her on the front lines of the movement? "The desire to do what's right," she says. "The most effective advocacy is when the indi- vidual gets involved," she says. "It takes both the system and the individ- ual, but no one can tell my story better than I can." Beauty Pageant Winner has a Powerful Voice for the People 10 Making A DIFFERENCE Difference in the Disability Community and adults with disabilities. "I wasn't aware of the magnitude of organizations and how many people wanted to help. It was exciting," says Moore, who is also mother to 2- year-old Jared. She would soon learn just how many people were willing to help her and friend Tanya McConnell, the mother of a 2-year-old with bilateral hearing loss, when they founded a grass-roots campaign named SOS Kids, or Save Our Special Kids, in late 2003. After learning proposed Medicaid cuts of $261 million for fiscal years 2004 and 2005 to children with disabilities, professional staff and thera- pists, were scheduled for the A Child's Love Leads Mother to Launch Save Our Special Kids 2004 legislative session starting in January, Moore and McConnell planned a rally at the state Capitol to bring A Child's Love Leads Mother attention to the proposed cuts. to Launch Save Our Special Kids With help from the Governor's Council on Developmental Disabilities, When Heidi Moore found out her first son had Down syndrome, she immediately knew Atlanta Alliance on Development Disabilities, the Arc of Georgia and other organizations, Moore and McConnell she would advocate on his behalf. pulled off a Nov. 8 rally at the Capitol Moore, a former structural engineer that attracted more than 200 children, for an oil company, quickly learned as parents and advocates. much as she could about Down syndrome, "We were just two concerned parents even before her son, Jacob, was born who put the rally together," says Moore. three years ago. "We had no experience, just a love for "I had 20 weeks during my pregnancy our children." to learn as much as I could," she recalls. Moore and McConnell may eventually "God had a reason for giving me and my make SOS Kids a nonprofit organization, husband Jacob, so we had to make the but for now, they continue to lobby the best of it." state Legislature against the proposed With the support of her husband, Medicaid cuts using their newfound Steven, Moore eventually joined the grass-roots know-how. board of the Down Syndrome In due course, Moore says, "I want Association of Atlanta and became as many people as possible to know they active with various Down syndrome can make a difference." organizations across the country. From For more information on SOS Kids, the start, she was surprised by the number call(770) 442-5458. of organizations advocating for children Young Man Turns Physical Disability Into Advocacy Triumphs It was a car accident more than 20 years ago that basically left then 18month-old Don Pollard immobile. But, that was the past, and the past is one thing this 25-year-old doesn't dwell on today. Three years ago, Pollard's curiosity led him to become an advocate and start an information clearinghouse network for people with disabilities. After receiving a letter in the mail about a nine-month advocacy course offered by the Atlanta Alliance on Developmental Disabilities and the Governor's Council on Development Disabilities, Pollard made up his mind to learn more about advocacy. "I wanted to help others, but I really didn't know how to go about it," says Pollard, who continues to have a physical disability since the accident. "After I found out about he Partners in Policymaking Program, I figured that would set me in the right direction." While participating in the Partners in Policymaking Graduate Program, Pollard learned the basics of grass-roots advocacy. But more profoundly, the course gave Pollard a broader sense of awareness about various disability topics. continued on page 12 Young Man Turns Physical Disability Into Advocacy Triumphs Winter 2004 11 People Who Make a Difference in the Disability Community continued from previous page "Even if all the information didn't pertain to my situation specifically, I knew I could still use it in my community," he explains. After graduating from the program in 2002, Pollard stepped into action with his first advocacy project that involved Wesley Mitchell, a Covington resident who had multiple severe disabilities and was confined to his home with little independence. Pollard eventually helped Mitchell get into an adult-day rehabilitation facility in Conyers, before passing away recently. "It's every human being's right to be independent and have self-worth," says Pollard of his advocacy work. "There's no need to stick someone in an institution when he can be in the community not only benefiting himself but also benefiting others." In early 2003, Pollard volunteered to serve as the sole plaintiff in the Americans With Disabilities Act compliance lawsuit in Conyers. The lawsuit resulted in making several locations in downtown Conyers' historic district provide wheelchair ramps to storefronts. "People with disabilities should be advocating for their friends, family and themselves," says Pollard, a part-time student studying political science at Georgia Perimeter College. Mother is Advocacy Vanguard For Annette Bowling, executive director of Albany Advocacy Resource Center, the most rewarding aspect of being an advocate on behalf of those with disabilities is seeing her clients participate in the community as full-fledged citizens. Bowling became an advocate as a result of her son's congenital heart condition. In 1961, her son was the first child to have open-heart surgery in the state of Florida. He had a second surgery in 1968. Divorced at the time, Bowling was faced with mounting medical bills. "I didn't have many resources to turn to at the time," Bowling recalls. "The community rallied around me and At a reception celebrating the first year of the distribution of Brain and Spinal Injury Trust Fund, Dennis Skelley, Chair of The Brain and Spinal Injury Trust Fund Commission, honors David Renz, Founding Commission Chair, for his leadership in establishing the commission. supported me and even helped me with costs. That is what really touched my heart and said to me that I need to give back to the community that has given to me." Bowling says her son, who is now 44, is doing great and that you would never know he experienced such a drastic operation at such a young age. Mother is Advocacy Vanguard Bowling moved to Albany, Ga., in 1971 after getting re-married. She joined Albany Advocacy Resource Center in 1974. Today, she leads one of the largest private provider agencies in the state, serving individuals with a wide range of disabilities and supportive living needs. The agency services 400 to 500 people at any given time with 16 programs, including a leadership-training institute, preschool project, adult-day program and independent-living program. Of utmost concern to Bowling is moving individuals off the waiting list for community-based services and providing employment opportunities for those with disabilities. With about 30 years of advocacy experience to her credit, Bowling still thrives and loves her work. "What keeps me motivated are people with disabilities. Most have taught me a lesson about unconditional love and the fact that it's not the big things that count, but the little things," she explains. "If we could all use that philosophy, this would be a much better world." Continued on Page 25 12 Making A DIFFERENCE Legislative Agenda Calls for As legislators prepare to slash budgets, advocates must prepare to make their voices heard. Overview by Eric E. Jacobson, GCDD, Executive Director In November, Gov. Sonny Perdue announced, "Despite some positive trends, we will face significant challenges in balancing thebudget." Once again, we face the prospect of cuts in services. However, our message needs to be (1) we cannot afford any cuts in human services, and (2) there needs to be a multiyear funding plan to address the waiting list for those in the community as well as those in institutions. Advocates across the state are suggesting that we no longer sit back and wait for things to get better. It is no secret that the Department of Community Health is continued on page 14 Winter 2004 13 continued from previous page GUIDE TO LEGISLATIVE AGENDA exploring ideas to reform the Medicaid program. Let's make sure that any reform has a strong self-determination or self-directed care approach. Additionally, now is a good time to create programs and opportunities that ensure direct care professionals are better trained, compensated and rewarded for the valuable, important and essential services they provide to Georgians with disabilities and their families. Let's call on the Department of Human Resources board to initiate and adopt new training standards for direct care professionals. We also need to be working toward a rate increase for providers and caregivers who provide high-quality services. Service providers have had only one 4 percent increase in 10 years. The Service Providers Association for Developmental Disabilities is advocating for a 6 percent increase. Now is the time for this to happen. Advocates across the state should ask Gov. Perdue, our legislative leaders, and members of the DHR board to support increased reimbursement rates for providers and changes in policies that support and enhance self-determination opportunities. These initiatives can only be successful if we change policies and allocate the necessary financial and human resources directed to Georgians with disabilities. By Pat Nobbie Annually, members of the Governor's Council on Developmental Disabilities approve the agenda that will guide activities during the legislative session. The process begins with input from stakeholders, council members and organizations with which they interact, and with research support from staff, particularly the policy director. Possible items are presented to the full council with detailed Pat Nobbie, Policy Director of GCDD, explanations of the legisla- presents advocacy agenda. tive action the item will require and the factors that may influence how successful the council may be in following that item in the session. The council then votes on each item, selecting a first priority and second priority list. First Priority Items This year, issues with the state budget will demand a great deal of attention. The budgets for the Department of Human Resources, the Department of Community Health, and the Department of Education are top priority. DCH contains the most damaging cuts from the perspective of the disability community. They include: Require premiums for the Deeming Waiver Program, using a sliding fee scale based on gross family income. Imposing a higher standard of need for Children's Intervention Services. Limiting home health visits (in-home therapy predominantly) Eliminating adult dental services. Eliminating children's psychological services. Eliminating coverage for orthotics and prostheses for adults (children will be covered under EPSDT (Early Periodic Screening and Diagnostic Treatment). These proposed cuts to Medicaid total nearly $6 million in state funds for the remainder of this fiscal year, and nearly $30 million in fiscal year '05. The loss in corresponding federal funds 60 percent match to 40 percent state funds exceeds $48 million. 14 Making A DIFFERENCE When the new board for the DHR was installed, they revised the budget that had been submitted by the previous commissoner. Cuts to direct services were restored; however, there are large administrative cuts proposed to the regional system more than $9.5 million that will have an impact on the ability of regional staff to focus efforts on home and communitybased services, and manage and oversee contracts. The following positions are proposed to be eliminated: Seven regional services administrators: This would eliminate the community administration piece, leaving the hospital administrator as the second in command to the regional coordinator; Five PI/Planning specialists. Four contract specialists. Seven financial specialists. Five prevention specialists. Other cuts that are cause for concern are the elimination of the outside independent JAHCO accreditation for state hospitals, elimination of the volunteer services at the state hospitals, and reduction of 113 middle management positions at state hospitals. These three cuts will challenge the assurance of quality in state hospital services. There is also a proposal to reduce Babies Can't Wait by $709,187; Family Connection Partnership funds, from $62,000 per collaborative to $50,000 per collaborative; funding for Babies Born Healthy $375,000. This program helps uninsured or underinsured women receive comprehensive prenatal services as early as possible in their pregnancies. The cuts in the Department of Education will largely be passed to local school systems. However, there are significant reductions proposed to the Georgia Learning Resource System, which provides in-service and technical assistance to specialeducation teachers and the parents of children with special needs. Other First Priority Initiatives: Money Follows People Resolution: The council would seek to get a resolution passed that affirms the intent of the state to move money used to support a person in a nursing home or state institution to the community when that person transitions to the community. The resolution follows President Bush's "Money Follows People" appropriations proposal to offer states $1.75 billion to move people from institutions to the community. This proposal is an attempt to undo the institutional-funding bias that keeps people in institutions, allowing the state to draw more federal Medicaid support for institutional care. Revenue Producing Options: The council will support any viable options that legislators propose to increase the revenue coming into the state in an effort to prevent future budget cuts, and possibly to avert some of the more damaging cuts that are on the table. Advocates themselves are researching potential options to share with legislators. Second Priority Items: Election Code: Within the context of The Voting Coalition, the council identified several aspects of the current election code that make it difficult for people with various disabilities to participate in the voting process. The council and a disability rights attorney are working with the Secretary of State's Office to propose revisions to the election code that would remove these barriers. Self-Determination Legislation: HB 701 and SB 170 were offered last session to authorize the implementation of selfdetermined service-delivery options for people with disabilities who want more control over the services they use. In the meantime, the departments of Community Health and Human Resources, with the support of the council and the governor's office, are pursuing administrative changes that would enable the state to offer this service as an option. Monitor HB 498: The council will monitor any proposed amendments to this legislation that authorizes the structure of the Regional MHDDAD system. Support Brain and Spinal Cord Injury Trust Fund Initiatives: The council will support the BSCITF effort to authorize more direct referrals for services, and to protect their fund from being used for purposes other than for which it was intended by law. Direct Support Professionals: The final second priority item is to begin educating legislators on the issues surrounding the Direct Support work force. Information will be disseminated on training, certification, compensation and benefits, as well as workplace development and supervisor training. This is to prepare the groundwork for a compensation initiative in the next legislative session. The legislative session is a moving target, so though this is the planned agenda, some of these items may not be addressed at all, and others may arise that will take priority. The Public Policy Committee monitors the actions of the legislature and proposes changes in the council's advocacy as the session progresses. Readers are urged to get on the Moving Forward mailing list, check the council's Web site to download fact sheets they can share with their legislators, for contact Danielle Doughman at (404) 657-2125. Winter 2004 15 State's Top Senate and House Leaders Ready for A Stormy But Civil Session By Jody Steinberg The recession might be on the wane, but its results on Georgia's politics and economics will linger long after. Three-plus years of a diminishing economy, decreased tax base and depleted emergency funds means that this year will be the toughest yet for legislators as they convene for the second session of the 147th Georgia General Assembly on Jan. 13. Despite a contentious first session in 2003 and revenue shortfalls that spell painful budget cuts, Republicans and Democrats are in agreement with Gov. Sonny Perdue, who has declared a moratorium on new taxes. The first republican governor of Georgia in 130 years, Gov. Perdue stormed the Capitol with enough republican support in 2003 to hold a Senate majority and usher in Georgia's new era in politics. Republicans, whose age-old minority status meant years of battling for equal time in the assembly, were suddenly elevated to leadership positions, while formerly dominant democrats were, for the first time in memory, subordinated to the role of minority party. Thus ensued the longest, most contentious assembly in decades, running into weeks of overtime. While battles were fought over taxes and budgets, newly appointed General Assembly leaders moved up and down the halls of the Capitol into the familiar "power" offices and the hierarchy of state politics. Two who found themselves shifting up include Sen. President Pro Tempore Eric Johnson, one of the most powerful seat in the Senate, and Speaker of the House Terry Coleman, who stepped into the shoes of Georgia legend Tom Murphy. As these rising stars in their respective parties prepare for the 2004 assembly, they look to constituents who will offer legislative decisions that will usher in budgeting negotiations guaranteed to be fractious and frustrating. 16 Making A DIFFERENCE Speaker of the House Terry Coleman (D-Eastman) understands the value of relationships. He has served in the Georgia General Assembly continuously since 1973. Coleman says, "in life, as in politics, you can't please all of the people, all of the time." However, the "Coleman style" is to develop relationships and nurture them with respect. For "Mr. Speaker," as he is often called, it is more important to negotiate through the disagreements and disappointments with an eye toward productivity rather than contention. "That's just the way we've always done it down here," says Coleman, a south Georgia restaurateur with successful lines of business in real estate and insurance. Representing Districk 118 in the House for 30 years, Coleman has sat as chairman of numerous committees over the past two decades including the powerful appropriations and budget oversight. The veteran politician assigns committee appointments to House members, appoints committee chairs, administers the rules of the Veteran Statesman Says Relationships and Involvement Can Make Things Happen chamber, presides over debates and routes legislation to the appropriate committees. Last winter's General Assembly, a scheduled 40-day session, dragged on as partisan politics, budget stalemates and political haranguing between the Republican Senate and Democratic House encumbered each significant bill as it moved through the legislative process. The result was a prolong, near-nightmarish session that began Jan. 14 and lasted through mid April. The 2004 legislative session will be different, promises Coleman. The speaker has worked to develop and strengthen relationships among his colleagues. "Last year was an unusual year, and we got a little off track," Coleman says. "We had a new governor, a new Senate, a new speaker and everything. When you have that many major changes in leadership, it just takes a little time to find your stride." Today, the speaker meets frequently with Gov. Sonny Perdue, Lt. Gov. Mark Taylor (D-Albany) and Sen. President Pro Tem Eric Johnson (R- Savannah), in an effort to improve the lines of communications between the executive and legislative branches of state government. "We are all in this together, and we all want the same results," Coleman says. "We want a government that works for all Georgians, and we want to operate state government in the most effective and efficient way that we can, maximizing the use of state funds leveraged with federal dollars." Continued on Page 19 Speaker Terry Coleman, 118th District Born Dec. 5, 1943, Dodge County, Married to Carol Cofield Coleman Ga. Two children, two grandchildren Associate Degree Justice Brenau College of Law CoRlleegineh1a9rd8t1C; JoullreisgeD; oBcatochraetloerofWScoioednrcoewinWCirlismoninal Profession business insurance Public Office Elected to the Georgia House service from 1973 to present of Representatives 1972 with continuous 2CM11110o9999e0m9887m3197m8b----ei2111trt0999Eeo0988elfe2086cotthfeetdhSSSBSeaeeeeusrrrrBdvvvvSeuegeepddedddetgaaaaaeCskssstoeCCCCRnrhhhhefoeaasaafrpiiiirerrtromhmnmmnecsaaaaeiGnnnbnCieooloooiofftffmryttttghhhhmOieaeeeivtAWHNPetrepuaosaepbitu;ygurlsshioCrectapahoSlrnCaifaRdaiofRrteemMmisetooympaneurnCasiertnocCsteesemonseCJmmtoCaoiminotmtimttivemtetemseiteitt;eteee Community Involvement * * * * * PMMMHreueeemsmmdiddbbbleeeeenrrrHt,,oBoBfofouoECaasaerrhsddtaFmmrooafafbnnDDecrhViirri1oeeseclc9utt8ioonnrr5tsseE-e1ar9stCFB8mioa7ralenonkDnyaoenfBpdDaarnMotkdmcgCReenoaCtrepofoourrna2tty3ionyears * Served, Mercer Medical School Board of Governors (1990-2002) Winter 2004 17 A Stormy But Civil Session continued from Page 16 Negotiating the hard decisions is not new territory for the Georgia Senate's President Pro Tem Eric Johnson (R-Savannah), who is an officer or member of eight legislative committees ranging from regulatory and appropriations to rules and ethics. When he was elected Senator Pro Tem last session, the former minority leader, renowned for his outspoken partisan politics, assumed the Senate's highest-ranking position as the chosen leader of the majority party. Promising at his inauguration to lead the 56-member Senate with "a mandate of cooperation and sensitivity of the minority party based on 130 years of experience," the Savannah architect proceeded to appoint four Democrats to chair committees, a significant gesture to the minority party. However, the lofty ideal of a bipartisan session was frequently sidetracked by passionate differences. Senator President Pro Tem Eric Johnson Tries to Calm the Stormy Seas Legislators plagued by partisan politics and the need to implement unpopular austerity measures battled each piece of proposed legislation along closely divided party lines. One of the most hotly-debated issues: the proposal to increase excise taxes on alcohol and tobacco to fund desperately needed health and social services. Despite strong support from Gov. Perdue and Sen. Johnson, a greatly reduced tax bill scraped by with one vote, assuring gaping shortfalls in a budget that, by law, has to be balanced. While special interest groups such as the disability community push for better services and accountability, Johnson and colleagues who prioritize and assign funding for state services know that some constituents will be disappointed. "Cuts are coming," warns Johnson, who has served in the Senate since 1994, following one term in the House of Representatives. "Voters and politicians are not for tax increases." Revenue collections will not meet the $16 billion annual budget, and state reserve funds are dangerously low. All state agencies, ordered to cut 2.5 percent from their budgets in 2003, have spent countless hours shaving another 5 percent from the 2004 operating budgets. Rather than scale back across the board, Johnson predicts that some programs will have to be eliminated if others are to survive. "We've cut as much as 20 percent of some programs. We have to improve efficiencies, cut overlap and find better ways to provide services," Johnson explains. "We cannot deliver just 80 percent of a program. We have to prioritize which services are more vital." 18 Sen. Eric Johnson, 1st District Born Aug. 20, 1953, New Orleans Married to Kathryn Parents Degree of in Marcus and Righton architecture from Tulane University Profession architect Public Office 1981 to 1983 Served as regional director for former U.S. Sen. Mack Mattingly 1993 to 1994 Served one term in the Georgia House of Representatives 122HER900dee900uai4c3p3sap,atoitormhEEtneiell,oeemmnFcctmtiboeneseddeatrnntppotocorfeaewt,tnshheiRdederefeRSuAgneuletpndlppapaiorstrtsoetoeirdptitircoeIitnmanindtpiiguno,osnrattsehrn,ieeodEsfGcRatoehunnoeldoermSgsUitaciatcoitSmleDietmSnieeveasientt,lteaoe.tpeems.inenJta,nuary ALAecratcidhveeitresicnhtispp. roGSfaeevsoasringoinnaaaThl r,aennaddndmcoaamgammzuiennmeitbryeecraefnfoatfilrystn,haeJmohAendmsoJeonrhicinassnoannIntaosltutithmuetne1i0oo0ff Most Influential Georgians list. TBhraen1tlsety,SeBnraytaonr,iaCl Damistdreicnt,wChhicahthSaemn., Johnson Glynn, represents includes Liberty, McIntosh portions of and Pierce counties. Making A DIFFERENCE "Consumers must meet with their legislators, and educate us on what the programs being considered do. If you see waste, if you see savings, identify those." Senate President Pro Tem Eric Johnson In making those hard decisions, legislators want to hear from their voters. "People's voices can be heard, but I remind everybody that there is going to be cuts. Legislators are going to have to make some tough decisions," adds Johnson. He explains that some services might have to have premium co-payments for health and personal care services, which is a primary concern for people with disabilities. Another option on the table includes reducing the number of beneficiaries at the top of the income ladder on Medicaid in order to protect those at the bottom. Disability advocates are pushing for mental health hospitals in Savannah and Columbus to be shut down, and the funds redirected to community-based housing and support services for the residents. But, despite skyrocketing medical costs, they will remain open because more citizens implored their legislators to keep them open. "Closing the hospital was not an option," explains Johnson. "We can find other ways to save those funds. Taxpayers across the country cannot afford to pay for all the healthcare that citizens need, we have to make some tough choices ... some programs need to be enhanced, but we can't do that without the funds." Similarly, citizen feedback played into the decision not to close any prisons this year, either. As voters try to influence legislative decisions, the most controversial bills can get so hung up in committee that they never reach the voting floor. The House and Senate depend on Johnson to assure that each proposed bill finds its way through and out of committee and to the floor for vote. To make this happen, Johnson's first session as a Senator Pro Tem found him scaling down his outspoken demeanor and straining for bipartisan cooperation to move legislation through the system and avoid stalemates. During the assembly, Johnson, Senate president, Lt. Gov. Mark Taylor (D-Albany) and Majority Leader Tom Price, (R-Roswell) meet daily to assure that bills pass through committees and onto the floor for the vote. Johnson advises Georgians not to expect new programs or funding increases to flow from this session. With revenues predicted to be down $440 million to $1 billion in fiscal year 2003 (July 1, 2003, to June 30, 2004, in Georgia), Johnson is steeling himself for a tough session filled with hard decisions and dissatisfaction among constituents competing for austere budget dollars. Continued on Page 23 Veteran Statesman Says continued from page 17 The Eastman, Ga., native is accustomed to hard work and good old-fashion preparation. Prior to opening this year's legislative session, Coleman has established a preliminary schedule for the House, something that was not in place in 2003. This year's "Coleman's Initiatives" include regular meetings, and a pre-established schedule for committee meetings, joint sessions and budget hearings. The wild-card in any legislative session is the budget, the allocation of state resources. Coleman is braced for a stormy winter but is optimistic about producing good results. The appropriations committee and several subcommittees have been meeting regularly over the past several weeks, reports the speaker. "We've spent considerable time meeting with state department heads who are bracing for additional cuts in funding which we hope will not happen," he says. "There is a great deal of uncertainty and we can't predict the future," Coleman says. "Every fluctuation in the amount of revenue collected by the state then reverberates into all departments large and small. It impacts on specific programs and services." "Even department heads and legislators are on edge, frustrated, because the state and national economy are not where "It's about relationships, but involvement is also important during the session. Even if something comes up at the last minute, a letter, mail or call helps." Speaker of the House Terry Coleman we would like them to be," Coleman says. "All they can do is propose things and make backup plans. It's just that kind of time of uncertainty." This year, everyone will be faced with even more difficult budget decisions than they had to make last year, and that spells reduced services, very few new programs and stagnant fees for services. Legislators are looking hard at maximizing revenue by supporting programs, such as Medicaid and PeachCare that leverage federal money. "To be able to draw down federal funds will be one of the highest priorities we have," says Coleman. "Especially when it comes to taking care of people who cannot take care of themselves [without support services]." Coleman warns that reduced financial reports mean belt tightening for those who rely on state funding. Speaker Coleman is an advocate for activism and wants to build successful relationships with advocates in the disability community. "Proponents and advocates are going to have to stay involved, be in the know and be available to answer questions," the speaker advises. He wants advocates "to stay involved year- Continued on Page 23 Winter 2004 19 Letter Writing An Important Way to Promote YOUR Disability Agenda Communication is an essential part of YOUR relationship with elected or appointed officials who make decisions. Letter writing is an important way to communicate your concerns or support for a legislative or budget item. Here are sample letters for your use: Representative's/Senator's Name Address Street, City, State Date Dear Representative/Senator (Last Name), (In the first paragraph, introduce yourself and let the person know you live in Governor Sonny Perdue State Capitol Atlanta, GA 30303 his/her district.) SAMPLE: My name is lived here in Homerville Alice I. for the Citizen. I'm 36 past eight year, years old and I in your district. (Clearly state your situation including the type of action or services you need aSNhhspahcnIAeeadnuraowrlodMrdrpwvmaesdihciPniayeugnbse..tL)ecgusoEtMtAt,dtioFn:vsigenaIelceydyIg.chtociiwhMcloogouieataoou'uyyrised,lestmdesrbbooawtobwufoolyireatbhvmnbcfieeetvaeamhwrecduaeoiriisa,wsltnaiethftbianeoysasra-dmrehbant,hdethyaohmiisotonPcseowamogeuwdwbausheawtccinllednahieoatrndryefanelS'.int.GdvftIieadMIgxew.tcieloenyiaotbvrgnremgiehostimeiamon6htl'pmoys9auPpnlmmteboyopiaeetnaeicy.aesgath-trerIblasstSaane.yaotnrseInamaelfedddtdtdeI Dear Governor Perdue: fsfdToreiohrrsvmaasinebcrekiNvlsiity.ocioee.Huss5.oif0nowrtGeoyveoeoNru,rroga.issat4aya4otneuddinkcfnotoohrmweym,ontuiahtrmteiorreeonnlaetirnteion4fitm,sh2coe3av5lnineepgefefdooGsrpetoloeffrosgprtieialodl pfiwoslaearbwiwtiailniirttgdhy [Your personal story here.] tcmmaAwossueonkelyttytiyoineyotuaeuhuarepesrtrt.tofherupeenpamudlrepeeianwntsgdhaeoperdculsaostmnnanstoteeiovd'eesedemrblsimueatndlhittngaeaterthnttseaafttotiwleolrauetsihtxoriienussttgrua.cplteAiecsslotshsooma.f,siTpnrmehgleviaesaydnesweeauiroeli,lmvIaienplwrllotoaehwmnredteueepnsdrattsttoaoto (ScsfSuerAuirntmMvidcimcPianaelLrsgiEi.zte:PfiaoslnerIdftaospMirersoepvUidimednioecplpBaooliicledrlktNalitwunkhmetaebitmveWherearoastrtinotyfiaonomhugrae,vLtsieofeisrptavouscis!ncsciedbeBslesey.sr.)siOttnoacunrqrdeualashivilonietwgsy Thank you for your attention. Sincerely, depend on it. (Ask for Please below friends a response write or and tell and I all and action.) call me at the address/phone number me what you intend to do to help. My vote, and want our representative to help us live independently. Your name, address and telephone # cc: Representative ... Senator... Thank you very much, Alice I. Voter (add your phone number and address are in his/her district and will know how this is important to reach you.) because the person will immediately know if you 20 Making A DIFFERENCE Our Sponsors - Help us to improve our editorial content as well as print additional copies of this magazine. We appreciate their support and yours. Albany Advocacy Resource Center Albany ARC serving our community since 1963 promotes the general welfare of people with disabilities and foster the development of programs on their behalf. (229) 888-6852 (24-hour on-call) www.albanyarc.org Beth English, Director 1906 Palmyra Road Albany, Ga 31701 (229) 439-7061 Winter 2004 GOVERNOR'S COUNCIL ON DEVELOPMENTAL DISABILITIES Over 117,000 Georgians With Developmental Disabilities Want... s Real Jobs s Real Homes s Real Learning Experiences s Real Choices Quality Life Our job is to build a powerful coalition of advocates, organizations and state agencies that will work together to make it happen. (404) 657-2126 www.gcdd.org Sponsorships Building on a tradition of quality and caring" LD Made Easy Specializing in organization and handwriting problems and "homework wars" Author of "Learning Re-enabled" Susan N. Schriber Orloff, OTR/L Occupational Therapist, Registered and Licensed CEO/Executive Director Over 30 years experience Former resource teacher 770-394-9791 www.childrens-services.com DEKALB DEVELOPMENTAL DISABILITIES COUNCIL (404) 508-7796 Fax (404)508-6443 ARC Cobb (770) 427-8401 www.arccobb.org 21 Medical Update Jos Cordero Crusades to Reduce Birth Defects and Developmental Disabilities By Renita Mathis I t is a sobering reality that approximately 54 million people in the United States currently live with a disability, and 17 percent of U.S. children under age 18 have a developmental disability, according to the Centers for Disease Control and Prevention. These growing public health concerns led the CDC to launch the National Center on Birth Defects and Developmental Disabilities. Created April 2001 by the Children's Health Act of 2000, NCBDDD works to improve the health of children and adults by preventing birth defects and developmental disabilities, promoting optimal child development, as well as ensuring health and wellness among children and adults living with disabilities. "We want to ensure that every state and local area has a strong program to prevent the birth defects that we can now prevent, such as spina bifida and fetal alcohol syndrome," says Dr. Jos Cordero, NCBDDD director. "Promoting the use of folic acid to prevent spina bifida, and educating the public about the risk of consuming alcohol during pregnancy are two examples of promoting optimal fetal, infant, and child develop- ment, and preventing birth defects and childhood developmental disabilities." Well before the creation of NCBDDD, the CDC was already engaged in birth defects and developmental disabilities research. It was 1988 when the U.S. Congress first appropriated funds for a disabilities prevention program in the National Center for Environmental Health at CDC. "CDC, whose mission is to improve the health and safety of all people, recognized that to improve an effective public health response in this dynamic and complex field, it would be necessary to have a dedicated center whose primary mission would be to work with and in the birth defects and developmental disabilities community," says Cordero, who received his bachelor's and medical degrees from the University of Puerto Rico, and his master of public health from Harvard University. Cordero, a native of Puerto Rico, joined the CDC in 1979 as one of the first Hispanic Epidemic Intelligence Service workers assigned to the birth defects program. At age 30, Cordero Continued on Page 23 NCBDDD Partnering Organizations (www.cdc.gov/ncbddd) Early Hearing and Detection Intervention (www.cdc.gov/ncbddd/ehdi/) works to ensure early detection and intervention access for infants with hearing loss. Centers of Excellence on Autism Epidemiology conducts collaborative studies on the prevalence and causes of autism and related developmental disabilities. The National Limb Loss Information Center (www.amputee-coalition.org) and the Christopher and Dana Reeve Paralysis Resource Center (www.paralysis.org) provide information and resources to people who are living with specific disabilities. The National Center on Physical Activity and Disability encourages physical activity for people who have physical disabilities with specific articles and resources. (www.ncpad.org) FASSNet and Project CHOICES FASSNet works to improve the surveillance for fetal alcohol syndrome at the state level; Project CHOICES is motivational intervention for women at high risk for an alcohol-exposed pregnancy. Legacy for Children a set of longitudinal, randomized, controlled studies examining the potential for improving child development outcomes through parenting programs designed to promote self-efficacy and a sense of community. National Resource Center on AttentionDeficit/Hyperactivity Disorder the country's first and only clearinghouse dedicated to the evidence-based science and treatment of ADHD in adults and children. Centers for Disease Control and Prevention 1600 Clifton Road Atlanta, GA 30333 (404) 639-3534; (800) 311-3435 (404) 639-3312 (TTY) 22 Making A DIFFERENCE was investigating three cases of a rare genetic disease called Barter syndrome. His research uncovered that the infants had a different illness caused by chlorine deficiency in their soy-based baby formula. Due to his work, Congress passed the Infant Formula Act of 1980, requiring that any food intended to be the sole source of nourishment contain all the necessary nutrients for babies to thrive. Today, the 53-year-old father of four adult children has a career that impassions him. As the NCBDDD director, he is engaged in a variety of research, partnerships, prevention activities, and education programs that strictly address the needs of the disability community. "Birth defects affect more than 120,000 infants each year in the United States, [which] represents 3 percent, or one in 30, of the infants born nationwide," says Cordero, who is the former president of the Teratology Society, a professional research society devoted to the prevention of birth defects. "More than 5,000 of the babies born with birth defects will die in their first year of life making birth defects the leading cause of infant mortality in the United States." For these reasons, Cordero is leading the NCBDDD on a crusade to prevent birth defects and developmental disabilities that he knows can be prevented. Although there are birth defects and developmental disabilities that cannot be prevented, Cordero and his team's mission does not change. "Today, more than 70 percent of all birth defects are of unknown origin, [and] until we know what causes birth defects, prevention will continue to be problematic," he says. "The more information that can be collected and studied, the better our chances of not only developing targeted responses to circumstances and conditions that might contribute to the occurrence of birth defects and developmental disabilities, but also of designing prevention strategies that will effectively mitigate their severity and possibly reduce, or in some cases eliminate, their occurrence. Vintage Photos Who's Who? Match the vintage photographs to the present-day one. A B C D 1. Heidi Moore Co-founder of SOS Kids and parent advocate 2. David Blanchard AADD Public Policy Director 3. Tanya McConnell Co-founder of SOS Kids and parent advocate 4. Mary Yoder New AADD Executive Director Answers: 1-D, 2-C, 3-A, 4-B Sen. Pro Tem Eric Johnson Says Everyone' Important continued from page 17 "Everybody's need is the most important. Everyone knows that putting funding in their area now will save money in the long run, but we cannot do it all," says Johnson, whose own sponsored legislation includes child protection laws, supports to rural development and access to criminal information to citizens and a two-year, 10 percent salary reduction for all legislators. "Consumers must meet with their legislators, educate us on what the programs being considered do. If you see waste, if you see savings, identify those." For Johnson, it's all about a collaborative effort between legislators and their constituencies. Speaker Coleman Says It's All About Relation continued from page 17 round and know their legislators as well as those who serve on the appropriations committees. "By the time the legislative session convenes in January, it's almost too late to begin the advocacy process. I see it as a year-round activity that begins in local communities with local representatives. When we get here to Atlanta, we are involved in a whirlwind of activities that centers around voting. I think we learn the issues and understand the problems best in our home districts, talking to local people about concerns that we can address at a statewide level." Coleman advises advocates to regularly call, advise and correspond with legislators or their staff members. "It's important to become an informed and reliable source of information," he says. Winter 2004 23 Discapacidades del Desarrollo en Nios DATO: Un 17% de los nios de EE.UU. menores de 18 aos de edad tienen una discapacidad del desarrollo. Las discapacidades del desarrollo son un grupo diverso de limitaciones fsicas, cognitivas, sicolgicas, sensoriales y del habla que comienzan en cualquier momento desde el comienzo del desarrollo hasta los 18 aos de edad. En la mayora de los casos se desconoce la causa de la discapacidad. Por eso es importante entender cuales son los factores que aumentan las posibilidades de que un nio pueda tener una discapacidad en el desarrollo y qu puede hacerse para prevenir esta condicin. Aproximadamente un 2% de los nios en edad escolar de EE.UU. tienen una grave discapacidad del desarrollo como retraso mental o parlisis cerebral, y requieren servicios educativos especiales o cuidados adicionales. Los departamentos de educacin estatales y federales gastan unos $36 mil millones de dlares cada ao en programas educativos especiales para personas con discapacidades del desarrollo entre los 3 y los 21 aos de edad. En los CDC, tenemos uno de los pocos programas en el mundo que realiza un monitoreo activo y constante de la cantidad de nios con discapacidades del desarrollo en una zona metropolitana grande y racialmente diversa. En 1991, los CDC iniciaron el Programa de Monitoreo Sobre Discapacidades en el Desarrollo Para el rea Metropolitana de Atlanta (MADDSP, por sus siglas en ingls) con el objeto de monitorear el nmero de nios entre 3 y 10 aos de edad que viven en la zona metropolitana de Atlanta y que tienen una o ms de las condiciones siguientes: retraso mental, parlisis cerebral, problemas del odo o mala visin. Los CDC agregaron los trastornos relacionados con el autismo al programa en 1998. MADDSP tambin ofrece oportunidades para estudios especiales mediante los cuales el personal de CDC puede identificar factores de riesgo para estas discapacidades y determinar la eficacia de los pasos tomados para prevenir las discapacidades. Actividades Relacionadas de los CDC: El Estudio del Desarrollo Longitudinal de los nios, es un estudio constante sobre los factores de riesgo en las discapacidades del desarrollo entre nios que fueron identificados gracias al MADDSP. El Estudio de Seguimiento de los Nios con Discapacidades en el Desarrollo, que analiza el funcionamiento actual y la presencia de condiciones secundarias entre adultos jvenes que sufren de discapacidades en su desarrollo. Programas para monitorear el nmero de nios con sndrome de alcohol en el feto (FAS por sus siglas en ingls) y para ayudar a las madres con riesgo de tener hijos con FAS para que usen mtodos de control de natalidad y dejen de tomar antes de embarazarse. Estudios basados en la comunidad para aprender lo que pueden hacer los padres para mejorar el desarrollo de su hijo. Straight Talk Times Have Changed By Susan Berch At birth I was diagnosed with a thyroid condition. I started taking thyroid medication when I was five weeks old. Even though I take medication, I have a learning disability. My father encouraged me to be independent and do my very best. My mother was supportive of this as well. For the past 10 years, I have worked part time for Jewish Family and Career Services. In 1993, I moved into my first apartment with a roommate and have been living on my own ever since. In March 2003, I bought my own condo. I use public transportation to and from work and other places as well. Having a learning disability hasn't always been easy. I get frustrated when it takes me longer to do my tasks, but I have learned not to rush. I know I have limitations, but I take great pride in my accomplishments. Last year, I participated in and graduated from Partners in Policymaking, an educational program that teaches people with disabili- ties and their family mem- bers to know their rights and advocate for themselves. It's also a lead- ership training program designed to increase empowerment and improve self-advocacy skills. Self- determination means to have the freedom and independ- ence to help and influence others. I really learned a lot from taking this course. I am grateful for my family, other parents, teachers and friends who helped me to achieve my highest potential. I try not to let my fears prevent me from living a full life. I have seen parents who are overprotective and hold their children back. For example, adults with disabilities should be able to live on their own, obtain a job, choose their own friends, and make their own decisions. It's very unhealthy for parents to shelter their kids because they won't learn to do things for themselves. Parents should encourage and allow their young adults to reach for the stars. People with disabilities can do so much with their lives if they are only given the opportunity. We have gone from institutionalizing people to providing independent living opportunities. I am thankful to be living in this day and age as an independent, productive member of society and wish others in my situation the same. If you are interested in telling your own story of triumph, submit a 500word article with a photo to Straight Talk Editor, c/o GCDD, 2 Peachtree St., SW, Suite 8-210, Atlanta, GA 30303; or e-mail to jnodvin@mayinstitute.org. We thank the Centers for Disease Control and Prevention for this submission. For more information, call Centro Nacional de los Defectos Congnitos y 24 Deficiencias del Desarrollo at (770) 488-7150. Making A DIFFERENCE People Who Make a Difference continued from Page 12 Ex-Peace Corps Volunteer Turns Disability Advocate Whether it's helping families access benefits for their loved ones with disabilities or helping people with disabilities become advocates, Dave Blanchard is the go-to guy. As director of public policy for the Atlanta Alliance on Developmental Disabilities, Blanchard took his global experience earned with the Peace Corps in New Guinea and translated it into addressing disability issues in Georgia. "I think [what I do now] is similar to my Peace Corps experience in that the only way you can succeed as an advocate is to sit down and listen to others and Ex-Peace Corps Volunteer Turns Disability Advocate work in collaboration to try to find where the consensus lies and from that move for- ward." After a two-year stint in the Peace Corps, where he and his wife developed a peer education program and taught English, math and history in a distance-education program, the couple came to Atlanta in 1997 where Blanchard began his advocacy work with Babies Can't Wait. In 1999, he joined Atlanta Alliance on Developmental Disabilities and continued his pro- fessional aim to "connect people with resources." According to David Braddock, author of "Disability at the Dawn of the 21st Century and the States of the States," in 2002, Georgia was ranked 44th in the nation for the amount of dollars spent on community-based services. In 2000, the state was ranked 50th. Blanchard's charge as an advocate and registered lobbyist with AADD is to work with other local and regional agencies and organizations to help the state move toward meeting the needs of more than 3,900 individuals currently waiting for com- munity-based services. "The thing I enjoy most is working with families and indi- viduals living these issues," observes Blanchard. "I try to help them get over hurdles and around obstacles. Their passion, energy and commitment are very inspiring. I also enjoy the challenge and importance of these issues." In addition to his advocacy responsibilities for AADD which has a three-prong mission of education, community enrichment and advocacy - Blanchard also manages the organi- zation's Partners in Policymaking Graduate and Alumni Programs. Citing the civil rights movement as an example, Blanchard says the disability movement, at the end of the day, wants to achieve the same goal, "a chance to be at the table where deci- sions are made and have a say in where they live, the jobs they Winter 2004 hold, and to have an opportunity to play and learn on an equal playing field." Visit the AADD Web site at www.aadd.org, or call (404) 881-9777. Disability Advocate Drives Movement It was a diving accident at the age of 19 that left Mark Johnson with a spinal cord injury. Soon after the accident, Johnson noticed people treated him differently because he was in a wheelchair. It was then that he decided to get involved in advo- cacy. Today, he is not only a self- advocate, Johnson also serves as an advocate for thousands of Disability Advocate Drive Movement other people with disabilities. As director of advocacy for the Shepherd Center since 1986, he says his mission is to "stir, con- nect and organize. "I either ask questions or encourage people to ask ques- tions,"he says. "If they want to do something about [an issue], I connect them with people or help them get organized." Johnson's role as an advocate for the Shepherd Center runs the gamut. On any given day, he can be found managing or advising on multiple projects. Johnson administers a list serve of 10,000 members, sending out alerts on disability issues. Currently, he is working in conjunction with People First to rec- ognize the fifth anniversary of the Olmstead Decision in June, and with the American Association of People with Disabilities and ADA Watch to recognize the 15th anniversary of the Americans with Disabilities Act in 2005. Ultimately, Johnson's work boils down to engaging new people around the concerns of the disabled and helping the community go from old ways of thinking: "those with the dis- ability are the problem" to new ways of thinking: "those with the disability are a part of the solution," he says. And his work in the disability community has been part of the solution. In 1977, Johnson founded the National Paraplegia Foundation. His advocacy has also included positions with the state of Colorado's Division of Rehabilitation and the Charlotte Rehabilitation Hospital in Charlotte, N.C. He has volunteered as a board member for a number of Atlanta-based organiza- tions including Easy Living Home Coalition, Unlock the Waiting Lists! Campaign, Disability Law & Policy Center, and Making A Difference magazine. For Johnson, political activism and representation are essential to the success of the disability movement. "If politi- cians don't know your issues, nothing gets done. You have to put a face on the issue. If they see you and hear you, they find it harder to resist, to ignore." 25 Resources Always begin first by contacting the local agencies in your community or county when you need help. For a comprehensive list of resources in Georgia for all subject areas, please visit: www.disabilityresources.org/GEORGIA.htm State Agencies: The state agencies listed below are recognized as those who provide "best practice" services and information to people in Georgia. The ARC of Georgia (404) 634-5512, Fax: (404) 634-9512 www.arcga.org Babies Can't Wait Children With Special Needs Division of Public Health, Department of Human Resources (404) 657-2726 or (888) 651-8224 www.ph.dhr.state.ga.us/programs/bcw/ Georgia Advocacy Office (404) 885-1234 or (800) 537-2329 FAX: (770) 414-2948 http://thegao.org Governor's Council on Developmental Disabilities (404) 657-2126 or (888) 275-4233 Fax (404) 657-2132 www.gcdd.org Parent to Parent of Georgia Inc. (770) 451-5484 or (800) 229-2038 Fax: (770) 458-4091 www.parenttoparentofga.org Statewide Independent Living Council of Georgia Inc. (770) 270-6860 or (888) 288-9780 Fax: (770) 270-5957 www.silcga.org University Centers for Excellence in Developmental Disabilities Institute on Human Development and Disability (706) 542-3457, Fax: (706) 542-4815 www.uap.uga.edu Elected Officials and Government Offices: Information on Georgia Government Web Sites: www.georgia.gov Georgia General Assembly www2.state.ga.us/Legis Georgia House of Representatives (404) 656-5082 or (800) 282-5800 http://www.legis.state.ga.us/legis/2003_0 4/house/index.htm Georgia Senate (404) 656-0028 or (800) 282-5803 http://www.legis.state.ga.us/legis/2003_0 4/senate/index.htm Office of Governor (404) 656-1776 www.ganet.org/governor Office of Lieutenant Governor (404) 656-5030 www.ganet.org/ltgov Office of Attorney General (404) 656-3300 www.ganet.org/ago Secretary of State's Office (404) 656-2881 www.sos.state.ga.us Advocacy Organizations: NATIONAL: The Access Board www.access-board.gov ADAPT (303) 733-9324 www.adapt.org ADAWatch (202) 661-4722 www.adawatch.org Advocating Change Together (800) 641-0059, Fax: (651) 641-4053 www.selfadvocacy.com American Association of People with Disabilities (800) 840-8844 www.aapd.com AAMR (800) 424-3688 www.aamr.org/Policies/policy_issues.shtml The ARC www.thearclink.org Center for Self Determination (734) 213-5220, Fax: (734) 213-5229 www.self-determination.com Concrete Change www.concretechange.org National Council on Independent Living (703) 525-3406 www.ncil.org National Organization on Disability (202) 293-5960 www.nod.org Not Dead Yet (708) 209-1500 www.notdeadyet.org SE Disability & Business Technical Assistance Center (800) 949-4232 www.sedbtac.org STATE: The Arc of Georgia (404) 634-5512, Fax: (404) 634-9512 www.arcga.org Atlanta Alliance on Developmental Disabilities (404) 881-9777 www.aadd.org Budget Coalition (678) 471-3804 Democracydawning@comcast.net disABILITY LINK (404) 687-8890 or (800) 239-2507 www.disabilitylink.org Georgia Council on Aging (404) 657-5343 www.gcoa.org Georgia Federation of the Blind Anil Lewis anilewis@bellsouth.net Georgia Public Interest Research Group (404) 892-3573 www.georgiapirg.org League of Women Voters Georgia (678) 547-0755 www.lwvga.org Mental Health Consumers Network www.mcg.edu/Resources/MH/Index.html People First David Mapp (404) 687-8890 Save Our Special Kids (SOS) (770) 777-0242 TanyaMcC@bellsouth.net Unlock! Sarita Reddy (706) 543-9959 Reddysarita@hotmail.com OUR SPONSORS: Albany ARC (229) 888-6852 http://www.albanyarc.org ARC Cobb (770) 427-8401, Fax: (770) 427-8402 director@arccobb.org Children's Special Services, LLC (770) 394-9791, Fax: (770) 394-7803 http://www.childrens-services.com DeKalb Developmental Disabilities Council (404) 508-7796, Fax: (404) 508-6443 Easter Seals Southern Georgia (229) 439-7061 or (800) 365-4583 Fax: (229) 435-6278 http://www.swga-easterseals.org Georgia Community Support & Solutions (404) 634-4222, Fax: (404) 634-1324 www.gacommunity.org May South (770) 956-8511, Fax: (770) 956-8907 http://www.maysouth.org United Cerebral Palsy of Georgia (770) 676-2000 or (800) UCP-WILL Fax: (770) 455 - 8040 www.ucpga.org 26 Making A DIFFERENCE Calendar January 2004 14 17 ATIA (Assistive Technology Industry Assn.) 2004 Conference Lake Buena Vista, FL (877) 687-2842 www.atia.org 15 The Arc of Georgia Legislative Day (404) 634-5512 www.arcga.org Mental Health Day at the Capitol National Mental Health Assn of GA (404) 527-7175 15 16 GCDD Quarterly Council Meeting Renaissance Hotel, Atlanta (404) 657-2127 www.gcdd.org 16 SILC (Statewide Independent Living Council) of Georgia Winter Meeting Atlanta/Decatur (770) 270-6860 Toll Free: 888-288-9780 www.silcga.org 22 24 Health Action 2004: National Grassroots Meeting Renaissance Mayflower Hotel Washington, DC. (202) 628-3030 www.familiesusa.org 23 25 State Indoor Winter Games Special Olympics Georgia Basketball, bowling, figure skating, floor hockey, gymnastics, Powerlifting, roller skating, speed skating, alpine skiing (770) 414-9390 www.specialolympicsga.org UPCOMING CONFERENCES: February 26, 2004 Disability Day 2004 Now we are getting ready for D Day 2004! Mark your calendar for Thursday, Feb. 26, 2004. (404) 657-2132 www.gcdd.org February 2004 4 17th Annual Legislative Breakfast Healthy Mothers, Healthy Babies (HMHB) (770) 451-0020 www.hmhbga.org 4 Dr. Ro Vision Series Athens (706) 546-0009 11 12 Poor People's Day at the Capitol Atlanta, GA (404) 622-7778 12 Substance Abuse Advocacy Day at the Capitol www.gasubstanceabuse.org 16 AARP Georgia Weeks at the Capitol March 5 (404) 870 3791 www.aarp.org/ga 19 "Under One Roof" Housing Conference Fort Valley State University (478) 825-6954 thomasb@fvsu.edu 19 PTA Day at the Capitol (404) 659-0214 25 Building Life's, Building Communities Best Practice Conference, transitioning people out of institutions rrtuttle@disabilitylink.org or mark_Johnson@shepherd.org 26 Disability Day at the Capitol 2004 (404) 657-2132 www.gcdd.org 27 29 Knowledge is Power: Take A Leap Regional Conference on Down Syndrome & Other Developmental Disabilities (404) 320-3233 www.down-syndrome-atlanta.org 28 Metro Atlanta Champs in JV and Varsity Competition at National Indoor Wheelchair Soccer Tournament American Assn. Of Adapted Sports Programs www.aaasp.org/ UPCOMING CONFERENCES: March17-20, 2004 Better All Together Better All Together #6: Inclusion Works! Topics inclued inclusion after graduation from school. April 28 - May 1, 2004 Immersion Learning About Self-Determination Center for Self-Determination in Partnership with the Georgia Governor's Council on Developmental Disabilities Atlanta March 2004 24 Senior Week at the Capitol Georgia Council on Aging (404) 657-5343 www.gcoa.org/ 5 State Wheelchair Basketball State Finals American Assn. Of Adapted Sports Programs www.aaasp.org/ 67 A Decade of Learning... The Journey Continues! The Larry Bregman, M.D. Educational Series a workshop for adults with developmental disabilities and their caregivers sponsored by: Jewish Family & Career Services (770) 677-9341 www.bregman.org 9 Suicide Prevention and Awareness Day at the Capitol (770) 740-0632 www.span-ga.org/ 17 20 Better All Together: Inclusion Works! Inclusive Education Conference Peachtree Wyndham, Peachtree City http://www.gcdd.org 24 28 2004 Habima Theater Production of "Music Man, Jr." Marcus Jewish Community Center of Atlanta (770) 395-2601 Winter 2004 27 Volume 4 Issue 3 Winter 2004 Making A DIFFERENCE The quarterly magazine of the Governor's Council on Developmental Disabilities Making A Difference Advisory Board Marlene R. Bryar Associate Director, Exceptional Students GA Dept. of Education & GCDD board Member Heidi Fernandez GCDD Board Member 2003 Partners Class Virginia Harris Executive Director, Bainbridge Advocacy Individual Network (BAIN) Mark Johnson Advocacy Director, Shepherd Center GCDD Marketing & Communications Committee Carlos Keilhauer Vice President, Wachovia Bank GA Hispanic Chamber of Commerce 10 SOS Kids Attracts Advocates From Around Metro Area More than 200 advocates participate at November rally to protest proposed budget cuts to programs for children with disabilities Pat Puckett Executive Director, Statewide Independent Living Councils of Georgia -- LEGISLATIVE ISSUE -- Governor's Council on Developmental Disabilities 2 Peachtree Street, N.W., Ste 8-210 Atlanta, GA 30303-3142 (404) 657-2126 www.gcdd.org Address Service Requested