GOVERNOR'S COUNCIL ON DEVELOPMENTAL DISABILITIES (404) 657-2126 www.gcdd.org Over 117,000 Georgians With Developmental Disabilities Want... REAL JOBS REAL HOMES REAL LEARNING EXPERIENCES REAL CHOICES We honor some of the people who work to improve the lives of individuals with developmental disabilities. GCDD Annual Awards Honorees for 2002 LEGISLATOR OF THE YEAR Doug Haines, Senator LEGISLATOR OF THE YEAR Judy Manning, Representative ADVOCATE OF THE YEAR Curtis Rodgers, The Shepherd Center ADVOCATE OF THE YEAR Grace Fricks, Unlock the Waiting Lists! Campaign LIFETIME ACHIEVEMENT AWARD Webb Spraetz, Jewish Family & Career Services MEDIA PROFESSIONAL OF THE YEAR Ken Foskett, Atlanta Journal-Constitution MEDIA PROFESSIONAL OF THE YEAR Ann Hardiem, Atlanta Journal-Constitution State Representative Judy Manning (L) with Council Chair Lynnette Bragg (R). GCDD ... Our job is to build a powerful coalition of advocates, organizations and state agencies Advocate of the Year Grace Fricks with Sheryl Grossman, Nursing Facility Transition Outreach Coordinator of DisAbility Link. Webb Spraetz (L), receives the GCDD Lifetime Achievement Award from Executive Director Eric Jacobson on his retirement from a career in service to the disability community. that work together to make it happen. Table of Contents FEATURES 5 Disability Get Out the Vote (GOTV) efforts prove successful 8 Playing Grounds Accessible playgrounds for all children 10 Transportation Programs across Georgia improve options 12 Remembering Jim Sanders: His works, his life 14 Olmstead Plaintiffs Making Choices Thousands with disabilities want out of state hospitals 19 Help Wanted Social Security helps Georgians with disabilities return to work 20 NEW FEATURE - POINT/COUNTERPOINT Assisted suicide: is it choice or murder? DEPARTMENTS 4 Legislative Affairs Governor Perdue shares views on Georgians with disabilities 6 Expert Opinion: One Therapy Option Applied Behavior Analysis (ABA) offers hope for problem behavior 12 Pioneers in the Disability Movement Do you think you can identify them as children? 13 Points of Interest - News You Can Use 18 State Roundup Disability community honors outstanding achievers 22 Opinions/Letters to the Editor 25 Bibliography - Behavior Management 26 Calendar 27 Resources GET TO KNOW SOME OF THE PIONEERS OF THE DISABILITY MOVEMENT IN GEORGIA See page 12 Making A DIFFERENCE 3 Perdue has plans for Georgians with disabilities Based on reports and words clearly enunciated Perdue vows to enhance access to services by during the campaign, it appears that Governor slashing bureauocratic red tape, and reorganize Sonny Perdue will be a supporter and champion the agencies that provide programs and ser- of disability related issues in the state. vices to those with disabilities, the elderly In interviews and a widely circulated letter in and poor. the disability community, Perdue articulates a "That all sounds good to me," says Mark vision for a new Georgia that includes the eld- Johnson, a nationally recognized disability erly, those with mental health and substance rights champion. "We have to put some of abuse problems as well as those with develop- Governor Sonny Perdue those comments in the perspective of a political mental disabilities. campaign but certainly Perdue speaks the lan- Perdue talks about a broken system that he will guage we want to hear. Let's hope in giving our "move aggressively in the right direction" in "Perdue new governor a chance, he will be our champion -- short order. articulates a vision the right guy in the right place at a very impor- In the heat of the campaign, Perdue ... that includes the tant time in our history." vowed to improve the quality of direct elderly, those with care staffing, and cut waiting lists for community services. "I will begin my administration with an earnest discussion with the clients and mental health and substance abuse problems as well as those with A citizen advisor is even more optimistic. "I've talked with Governor Perdue many times. He has an understanding and perspective of disability issues as well as the his- their families about the most practical developmental tory of what we have been able to do or not solutions" in problem areas, he says. "I look disabilities." do here in the state," said Grover McDuffie, a forward to ... make great strides in the effort to disability rights advocate. "We are going to see a improve the quality of life for citizens with disabilities." change and I sincerely believe it will be for the better." New leadership calls for renewed advocacy "The slate is clean, it's a new day in Georgia and an opportunity to create new relationships," said advocacy consultant Dawn Randolph on November 6, 2002 following national elections that saw the power structure in Georgia and nationally shift to Republican control. Key positions in the Georgia House and Senate, including the Speaker of the House, are under new leadership. Georgians can also expect to see changes in numerous administrative appointments across the state. Never has it been more important for Georgians to become advocates ... before the General Assembly opens Governor Sonny Perdue, along with Roy Barnes and the lieutenant gubernatorial candidates, participated in the successful Quality of Life Candidates' Forum in Macon last Septemer. 4 Making A DIFFERENCE January 13, 2003 with the swearing in of Governor Sonny Perdue. "The advocacy skills you know can help create new relationships" that are critical to our legislative agenda, and the best time to create those relationships is now, when the legislative sessions begins" adds Randolph. The Governor's Council on Developmental Disabilities has ranked their legislative priorities for the 2003 legislative session. Georgians wanting to increase opportunities and services for citizens with disabilities are encouraged to join the Council and other advocates in focusing on these issues, listed in order of priority on the next page. LEGISLATIVE AGENDA GCDD Disability Legislative Agenda for 2003 1. Support Unlock the Waiting Lists! and Olmstead budget allocation so that citizens with disabilities may leave institutions and service waiting lists to live in the "least restrictive setting," in accordance with the 1998 court U.S. Supreme Court ruling. 2. Continue direct care professional workforce development efforts. Current initiatives include supporting the Provider Fair Share legislation currently being drafted and an annual cost of living increase for direct support professionals. 3. Propose amendments to House Bill 500 and/or other related legislation to ensure that special education funds follow the student into regular education classrooms. 4. Propose and pursue budget line items for Project WINS and WINNING Teams, and seek dissemination and sustainability through the RESA network. 5. Support the $750,000 DCH request for for a Medicaid Buy-in pilot for workers with disabilities to enable them to maintain their Medicaid coverage. 6. Support House Bill 1412, or "Sammy's Law," which would require the non-custodial parent to provide child support to the custodial parent for their child with a disability who is unable to support his/herself independently past the age of majority (18 years). 7. Monitor amendments that may be offered for House Bill 498. Disability GOTV efforts prove successful in November election For the second election cycle, The Quality of Life Voter Education Project initiated the Get-Out-the-Vote contest. The competition was to increase participation of human service organizations with the end result of getting individuals with disabilities more involved in the voting process. This non-partisan activity was the brainchild of Pat Puckett, executive director of Statewide Independent Living Council of Georgia. Entrants were chosen based on the following activities: Number of people called and reminded that their votes are important; number of people assisted to vote by absentee ballot; and number of people assisted with transportation to the polls. AND THE WINNERS ARE... URBAN FIRST PLACE DisAbility Link in Atlanta with 5,654 GOTV activities SECOND PLACE Disability Connections in Macon with 313 activities THIRD PLACE Walton Options for Independent Living/People First in Augusta RURAL FIRST PLACE Bainbridge Independent Living with 1,500 GOTV activities SECOND PLACE Stephens County People First Star Gazers with 1,053 GOTV activities THIRD PLACE People First of Fitzgerald "We're trying to build a larger and larger voter block," says Grace Fricks, director of Government Relations for Unlock the Waiting Lists! Campaign and coordinator of the contest, on the purpose of the Get-Out-the-Vote contest. That block, she says, includes friends, families and co-workers of the disabled. "[We] believe that when people with disabilities vote that's when we're going to see major policy change. It's one of those activities that supports voting," Fricks says. Fricks not only wants individuals to participate in each contest, but she adds, "It's an easy way for community groups to make money." Making A DIFFERENCE 5 EXPERT OPINION by James Moore, PhD; Michael M. Mueller, PhD with Lisa Lilienthal One Therapy Option: An explanation of ABA Applied behavior analysis offers hope for problem behavior Watching children grow and develop, giving them the to observe when and why the behavior happens. Once an tools and support they need to reach their full potential, evaluation is made, together you can determine the setting and knowing when to step aside and let them find their way that is best for your child and your family. is a tough job for any parent. For families whose children have behavior disorders, the job is harder. Once you know Home-based therapy that your child needs intervention, your job as a parent Home-based therapy requires a big commitment of time turns into one of advocacy working on behalf of your and energy from parents and other caregivers. There are child to find the very best treatment. As any parent who advantages -- the early identification of problems, the abil- has been down this road will tell you, behavior manage- ity to incorporate things that are relevant to the child into ment is hard work, but the rewards are worth it. therapy, and using those closest to the "Watching Blake put child as teachers. In- on his shoes, seeing him grin at us, each step is home therapists assist parents as they learn huge," explains Claire how to help their child Dees of Atlanta about her 14-year-old son, acquire appropriate skills, communication who has severe behavior and functional living problems. Blake's parents struggled with techniques. Home-based therapy increasing isolation and is working great for were worried for their son's future. Cynthia, the mother of three-year-old, Zachary, The answer for Blake, who has autism. When and for many children like him, is Applied Cynthia became concerned that traditional Behavior Analysis (ABA). Christian Bray enjoys his home-based ABA session with therapist Phil Stepka speech and occupation- ABA is an approach to al therapies weren't treating behavior disorders that has been around for more helping Zachary work through sensory integration issues than 50 years, and can be used to teach children with and non-compliance, she decided to use applied behavior autism spectrum disorders, other developmental disabili- therapy. She quit a management job to stay home with ties or brain injury or other trauma. With ABA, learning is Zachary. In hours of intensive, repetitious sessions per broken down into very small or `discrete' steps and is week, Cynthia and a behavior therapist use discreet trial taught using repetition, positive reinforcement, and what- training and general behavior therapy to teach Zachary ever degree of prompting is necessary for success. Most skills and social behavior. children who are learning in an ABA environment are doing In the discreet trial method, tasks are broken into small activities that are appropriate for their needs and level of segments and Zachary is rewarded with positive reinforce- development. ment -- for example, getting to play with a special toy for ABA can be practiced in the home, at school or in cen- sitting on a chair. For Zachary, seemingly small tasks can be ter-based programs. Deciding which approach is best for overwhelming, leading to meltdowns, explains Cynthia. your child is the first step, and getting a qualified ABA eval- "You need a strong heart, mind and soul because it takes uation will help you determine your child's specific needs a lot to achieve a small step," says Cynthia. Training for intervention and support. A professional will watch a through behavior response, repetition and very positive child with problem behaviors in several situations in order reinforcement has been very effective. In one year, Zachary 6 Making A DIFFERENCE has gone from learning to sign to communicate, to recog- mother, Claire. "We tried different medications, but his nizing colors, shapes, numbers and letters. He gives "yes" behavior was very impulsive and unpredictable, and he was and "no" answers to questions. becoming dangerous to himself. In Blake's case, the school system pays for his education School-based therapy and transportation to the center five days a week, and a Depending on the resources in your community, school systems offer behavior intervention plans and specialized staff that is available to evaluate your child and support his teachers. School-based therapy works much like home- based therapy in that the child is in a familiar setting, doing things that are relevant to him or her. "Being at school, interacting with peers and being an active part of a learning environment is a big part of being a viable, functioning child," says Cassandra Stegall, educa- tion program specialist in the area of emotional/behavior disorders for the Georgia Department of Education. "School is a good place for children to learn and practice behavior therapy, because it is a real world setting." Stegall Therapist Bill Plachinski works with Blake Dees at his center-based ABA recommends that parents start by talking to local schools program. about what resources they have available as well as those that can be requested from the state. Medicaid waiver helps the family pay for in-home caregivers A great resource for parents who are new to advocacy is who are trained to work with Blake. It's a team approach; other parents who have traveled this road before. Parent Blake usually requires two-on-one care from people who mentors are available in many school systems, through a understand how to safely manage his assaults. mentoring program supported by the Department "Blake has probably made more progress in the last six of Education's Division of Exceptional Children. We months than in 14 years," says Claire. "Now, with very minimal assistance, he can dress The biggest advantage to school- are updating our himself. Where we were once worried list based invention is that each school system, by law, must have some of providers who about being about to keep him at home long-term, we can now get him out offer services in place. This means it is more likely that behavior prob- Behavioral Therapy lems can be dealt with earlier in Services. Please contact Janice their progression, making them into the community." The advantages of center-based therapy are most felt by families who are experiencing extreme easier to treat before they Nodvin at (770) 956-8511, behaviors that are dangerous to become more severe or danger- the child and to those in the com- ous. It may take some home- ext. 207 or jnodvin@mayin- munity. It allows therapists to focus work on the part of the parent to find out what services are avail- stitute.org to be added to on those behaviors while controlling the environment and external distrac- able, and it pays to educate yourself about what the schools are obligated our resource list. by law to provide. The important thing is tions. Is ABA right for us? to ensure that the whole team is working Parents struggling with behavior disorders towards the best outcome for your child. must take several things into consideration: the time and resources of the family, the severity of the behaviors, and Center-based therapy the help that is available in the community. Applied behav- In center-based treatment, a child is relocated to a con- ior analysis is a comprehensive approach that takes a lot of trolled setting for evaluation and treatment. Center-based hard work, but promises behavior changes that work treatment is usually recommended for children who have across all environments -- work, home and school. See the very severe behavior problems, or medical complications Behavior Management Bibliography on page 25 and Resources on that make the treatment more complex. This was the case page 27. for Blake Dees, the 14-year-old with severe aggression, pica James Moore and Michael Mueller are Co-Directors of School (eating unnatural substances) and self-injury. Consultation Services, May South. Lisa Lilienthal is a writer and "Blake had just hit puberty, and we were at a point where public relations consultant. we could not take him into the community," explains his Making A DIFFERENCE 7 Playing Grounds Alyssa Barnes helps create recreational facilities for all children RECREATION by Aileen Harris Miller For able-bodied children, recess is often one of the most enjoyable times of the day. They get to run and frolic about on the playground-soaring on swings, climb- ing on monkey bars. But for children with special needs, An accessible playground at Marcus Institute is a welcome addition to its Atlanta neighborhood. recess may not be fun at all. "I was reading an article about a child who uses a wheelchair. He said his least favorite part of the for both able-bodied and special needs children, Boundless day was recess," said Alyssa Barnes, a graduate student at Playground officials say. the University of Virginia in Charlottesville, majoring in Certain that an accessible, integrated playground was Special Education. "He had to just sit back and watch." needed in her native state, Barnes presented her idea to her As a teacher of children with special needs, dad, Georgia Gov. Roy Barnes, who put in her touch with Barnes saw first hand how special needs chil- others who might help the playground project move forward. dren could be relegated to the sidelines at a With a group of interested parties, Alyssa Barnes began playground. "I discovered that there are not look around for a location where the greatest number of chil- a lot of playgrounds that are accessible dren would utilize the playground, and Centennial Olympic to children who use wheelchairs," she Park in downtown Atlanta came to mind. A legacy from the said. Barnes wanted to change that. So 1996 Atlanta Olympic Games, the park is a popular Atlanta she decided to coordinate an effort to attraction built in a quilt-theme design which includes a sig- build an accessible playground with nature plaza with a dramatic Olympic Ring fountain, a six- equipment that encourages able-bodied Alyssa Barnes and special needs children to play together. acre lawn and a natural amphitheater. With her father's introduction, Barnes shared her vision with enthusiastic offi- "Research shows that children with disabilities have less cials at the Centennial Olympic Park-Georgia Dome-Georgia opportunity for community involvement," said Barnes. "This World Congress Center complex. playground is a way for children with disabilities to have the "The park has a tremendous number of visitors, of both level of community involvement and the same opportunities able-bodied and special needs children," said Mark Banta, as their typically developing peers." general manager for Centennial Olympic Park. "We said we Five million American children -- almost one in every ten -- would very much be interested in working with them [to has some type of disability that excludes them from really build the playground]." playing in traditional playgrounds, according to Boundless With a children's museum scheduled to open in March Playgrounds. The Bloomfield, Connecticut-based organiza- 2003 and plans for a new aquarium and the new World of tion helps communities build fully integrated playgrounds Coca-Cola well underway, the area surrounding Centennial that are at least 70 percent accessible. Play is important to Olympic Park is shaping up to be the epicenter for family the social, emotional, physical and intellectual development activity in metro Atlanta. 8 Making A DIFFERENCE "Play is important to the social, emotional, physical and intellectual development for both able-bodied and special needs children ..." The Marcus playground above is an example of an accessible playground used by students and neighborhood children. More than 125 volunteers from the Southeast Division of The Home Depot, including community and family members, rallied together to build a playground in a day on the grounds of the newly-opened Marcus Institute this past September. The project was spearheaded by KaBOOM! a nonprofit organization that brings together people, community organizations and businesses to develop safe, healthy and much-needed playgrounds, and build them in one day. For more information, contact www.kaboom.org or www.marcus.org. "The playground will be part of a park that is right in the middle of redevelopment," said Banta. "It's going to be a really neat place down here." "We couldn't have asked for a better location," said Barnes. It's been a little more than a year since Barnes first came up with the idea for the playground, and efforts to raise approximately $750,000 needed to construct the 30,000 square-foot facility have gone well. "We've raised over half of the amount we need," said Barnes. "The Marcus Foundation has given us a very large donation, we have some federal grant money, some state money and personal contributions." The target opening date for the playground is early summer. Meanwhile fundraising efforts are continuing and the construction starts soon. "We will do the hardscape work this winter and put in the plant material and equipment in the spring," said Banta. In the early design phase, the project team interviewed parents of children with special needs about the challenges they encounter at playgrounds. The playground will feature both standard and accessible equipment. For example, a standard swing set will be next to a swing that has a platform and allows children in wheelchairs to swing without leaving their chairs. A crawl tunnel and a wrinkle slide will be included among the play equipment. "The actual ground will have bumps and hills," explained Barnes. "There will be nooks that children can crawl into. It will all be accessible." Accessible playgrounds should have areas and equipment that is sensory rich so children with developmental and sensory disabilities can actively and safely participate with their able-bodied peers, according to Boundless Playgrounds. "I am a parent of a special needs child. I know that opportunities for an all inclusive playground that encourages children of all abilities to play side by side are not widespread," said Banta. "To have an all children's playground in a park as nice as Centennial Olympic Park will thrill parents of both able-bodied and special needs children." Jessica Yogev enjoys playing with her therapist on the sensory-rich playground. Making A DIFFERENCE 9 TRANSPORTATION By Jody Steinberg Transportation is key to quality of life Programs across Georgia strive to improve options Joanne McClain, 38, of Ludowici "It would be nice if [transit sys- would like to return to physical therapy tems] would all just comply with the for her back injury, but she can no longer laws," says Steenhout, echoing the afford $7 per trip to travel to neighbor- voices of consumers across Georgia. ing Hinesville. In Savannah, 70 miles "The real problem is attitudes, and I away, staff at LIFE Center for don't know the solution." Independent Living (CIL) is searching for Although public transportation funds to renew the voucher program has made great strides in accessi- that helped pay for client transporta- bility, riders with disabilities continue tion. Until then, McClain, like many to encounter drivers who don't other Georgians with disabilities, stays announce stops or secure wheel- home more often. chairs and those who are unhelpful Across Georgia, particularly in rural or operate the lifts begrudgingly. areas, transportation - or lack thereof - Scheduled door-to-door lift van rid- remains a stumbling block to self-suffi- ers complain about unreliable serv- ciency, employment, community partici- ice, notorious for leaving individuals pation and care for Georgians with dis- waiting when they should be at work abilities. or appointments. "People either depend on the good In Georgia, transportation funds will of family and friends, stay home or are parceled out by an alphabet end up in nursing homes," says LIFE Executive Director Nicolas Steenhout, who has monitored transportation situations for years. The same problems LIFE, Inc. Executive Director Nicolas Steenhout, seen here boarding a Chatham County fixed route bus. soup of agencies to clients who qualify through one of their service programs: from Social Security (SSI/SSDI) to Department of exist nationwide, he adds, from public transit systems that Community Health to a host of divisions under the skirt compliance of the Americans with Disabilities Act Department of Human Resources (DHR), Department of (ADA) to service problems with private carriers. Transportation (DOT) and CILs. In some areas, coordinat- The recent lawsuit in which riders with disabilities sued ed networks increase economies of operation and reduce the Metro Atlanta Rapid Transit Authority (MARTA) for program duplication. In others, the vast patchwork of ADA violation is not an isolated incident. Disability advo- services is so discombobulated that individuals call cates took public transportation grievances to city hall in ambulances to get to a doctor. Savannah and Augusta and complaints are also surfacing In 2002, DHR, provided 2,730,531 rides to Georgians at another metro Atlanta provider. with disabilities, mental health and substance addiction Freedom Ride Voucher program lets counselor help others Gerald Powell, a peer support counselor and nursing home transition coordinator at Walton Options Center for Independent Living in Augusta, spends his days helping people with disabilities live more independent lives. As liaison to 16 counties, Powell travels about 700 miles per month. In his first month going county to county to raise awareness of the transition program to help people move out of nursing homes and into communities, he logged over 5,000 miles. Powell is blind and can't drive, but his designated driver is reimbursed $.35 per mile through the newly-formed Voucher to Ride program. Demand for the Richmond County voucher project, launched in June with a $20,000 seed grant from the city of Augusta and a $5,000 match from Walton Options, is exceeding expectations. "We've seen a tremendous response," explains Willie Jones, part-time Walton employee and president of Able-Disable, a coordinated network of clients, organizations and individuals focused on improving transportation for people with disabilities in the region. "There is a great need out there." "I'm glad to be able to help people become independent," says Powell, and transportation is key to independence. "We still have a sense of pride and worth. There are jobs out there, but they are hard to find." "Without the voucher program, I probably wouldn't be working, at least not doing this kind of work," adds Powell. 10 Making A DIFFERENCE and those who are aging or low- Vouchers are also income in 145 counties, costing tax- working for southern payers $25,483,947, or $9.33 each Bainbridge citizens, trip, up from $17,600,464 for 2,184,985 trips, or $8.05 per trip the year before. Since committing to a consolidated transportation network that pools the resources of all DHR agencies, the number of rides has steadily increased as DHR streamlines operations and leverages DOT 5311 funds to finance new vehicles. Yet thousands of Georgians remain homebound for all but the most where BAIN CIL received a grant from the Federal Rehabilitation Services Administration. Qualifying clients may use the vouchers for school, training, employment, and related community services. Situated in the county seat of a largely rural area, the Industries of essential reasons. the Blind is a magnet for "The major issue is always lack of funding. We keep getting mandates to increase the number of trips but not the dollars," explains Katrina Wilder, workers who cannot drive. "BAIN has taken the lead on trying to press the issue," of better Two years in the planning and just two years into operation, DCUTS has grown to 15 vans, integrated into the community, created jobs and become self-sufficient. program specialist at the Transportation Division of DHR, where No matter where you live, transportation is an issue. In two years, D-CUTS has grown divisions have always from two to 15 vans and integrated allocated transporta- every local transportation provider tion independently. The except for the statewide, non-emer- coordinated system, gency Logisticare service administered administered through by DCH. D-CUTS is economically self- 13 regional offices, aims to increase effi- ciency. In Augusta, which has limited fixed route and paratransit service, the lights go out on public transportation at 6:00 p.m., according to Tiffany Johnston, Hello, I live eight miles from town. Do you have a lift van? executive director of Walton Options CIL, which serves 26 counties in Georgia and South Carolina. Walton formed AbleDisable, a regional task force of government and charitable organizations to pool resources to provide accessi- transportation, says board member Neil Griffin, Bainbridge College education technology coordinator. "There have been a lot of initiatives on the federal level to fund a paratransit system with regional development councils providing the local match. Our ble, affordable rides. county commission has started the process and BAIN wants to be Vouchers: invovled, both as participant, maybe a provider or coordinator. We're the freedom to choose folks that have to deal with con- Walton recently introduced a vouch- sumers' transportation needs on a er program that riders use to reimburse daily basis." their chosen driver by the mile and negotiated voucher rates with certain providers, including the Augusta Public Community coordination Transit system and a private lift van drives best practice service, most of which limit services to Just north of BAIN, the Dooly-Crisp Richmond County. Other rides are paid for by the service agency. The voucher program has been a boon to those who qualify, though the concept of choice is often hard for consumers to grasp. Ultimately, they catch on and enjoy the freedom of vouchers. United Transportation System has won national awards and become a model for other regions for its collaborative between city and county governments, DHR, public ridership, DOT 5311 rural transportation funds and grants. sufficient, has created jobs and contributes to the economy "We took all the resources already out there and consolidated them. Now we have more vehicles on the road serving more people at a more efficient cost to the tax payer," explains Ryan Kelly, president of Community Transportation, Inc. the consultant that spent over two years planning D-CUTS before it launched. "This is a win-win. We are eliminating the duplication of services, and we're providing a better service that is run like a business and covers a very needed component of rural America that is very much overlooked." As budgets are tightened and CILs are pressed to find better ways to service more clients with less money, transportation dollars are squeezed even more. Building coalitions with better-funded agencies and aggressively researching new funding sources are key to piecing together regional transportation solutions. But as the struggle to solve the transportation puzzle continues, Georgians with disabilities are still left out in the cold, including McClain. "Without the vouchers I don't travel as much," she explains. But, "If the voucher program came back, I would be able to go and do what I need to do again." Making A DIFFERENCE 11 Remembering Jim Sanders: His works; his life By Janice Nodvin After his daughter Megan was born with Down syndrome 18 years ago, Jim Sanders wanted her to have the best that life had to offer. As the years passed, he made it his mission to secure those same benefits for all Georgians with disabilities. He became a passionate advocate on their behalf, lobbying members of the General Assembly. He helped nonprofit organizations establish group homes for people with developmental disabilities. He was instrumental in setting up the Georgia Community Trust, which helps families plan for the financial future of relatives with disabilities. He set up websites for disability groups to handle inquiries and communicate with their members (www. jimsanders.com). Mr. Sanders was an attorney specializing in wills, trusts and estate planning. "He wanted Georgia to be a leader in services for people with disabilities," said Beth English of Albany, executive director of Easter Seals of South Georgia. He served as chairman of the Governor's Council on Mental Illness, Mental Health and Substance Abuse. He died in August of complications from esophageal cancer. The DSAA, established the James Sanders Jim Sanders and family. Distinguished Servant Award which was presented for the first time at the Down Syndrome Association of Atlanta Regional Conference. This award, bestowed yearly to a member of the legal profession, represents an individual who has advanced the rights and interests of persons with developmental disabilities in Georgia. Jim was the first recipient of the award, which was presented to Mandy Griffin, Jim's wife. Mandy is a former juvenile court judge for DeKalb County and currently works as a parent mentor with the DeKalb County School System. Tribute to my dad Jim Sanders was born on October 14, 1950. He was born in Lexington, Kentucky. He had one sister and one brother. He played softball and rode bikes. He met Mandy Griffin at work. They got married in 1977 and had two daughters, Megan and Kelly. Jim Sanders began working for people with disabilities after Megan was born. He wanted to help families with children with disabilities to plan for the future. He donated his time to help with this. Jim got sick for five months. He passed away. He will be missed by many. Jim Sanders was a very special man and my dad. By Megan Sanders, age 18 PIONEERS OF THE DISABILITY MOVEMENT Who's Who? A B C D The Georgia Community Trust can provide financial assistance to a family member with a disability without sacrificing that individual's public assistance. For more information: www.georgiacommunity trust.com or contact Robert Fink at (770) 431-7070 Answers: 1-B, 2-D, 3-A, 4-C 1. Lynnette Bragg GCDD Council Chair 2. Mark Johnson The Shepherd Center 3. Grace Fricks Get out the Vote 4. Joyce Ringer Georgia Advocacy Office 12 Making A DIFFERENCE NEWS YOU CAN USE Rebuilding the ARC John Foley, National Consultant with The ARC of the United States, was in Georgia the week of Dec. 2-5, listening to the concerns of stakeholders and talking with parents, family members, individuals with developmental disabilities, providers, educators, advocates and support groups. The purpose of his visit was to help determine the best course of action for developing a strong statewide voice for people with developmental disabilities, and how the State and national ARC can help in this movement. We hope to see more of John. Need to get away? Got the cold weather blues? Get the help of a company that plans vacations for special travelers. Trips Inc. Special Adventures provides travel outings for adults with a range of abilities in a safe, respectful and fun atmosphere. Their trips are designed for people with developmental disabilities and special needs who require staff assistance for a secure and enjoyable vacation. For more information, visit www.tripsinc.com or contact (800) 686-1013. John Foley, national consultant with The ARC. FOHS provides care kits for emergency room visitors and books for the hospital's Ready Set Read program. Call Jody at (404) 248-0972 or visit www.friendsofhughesspalding.org. Virtual disability museum For a historical perspective of life and issues concerning people with disabilities, try a visit to The Museum of disABILITY HISTORY. The museum is dedicated to the collection, preservation and display of artifacts pertaining to the history of people with disabilities. Located in Buffalo, New York, the museum offers educational exhibits Santa remembers everyone! Christmas came a little early for more than 100 children at the Pediatric Rehabilitation clinic of Hughes Spalding Children's Hospital. The Friends of Hughes Spalding is a volunteer organization that works with the medical staff at the hospital to provide each child with developmental toys specific to his or her needs and selected to extend therapy to the home. A party December 13 treated the children to storytelling, festivities and a special visit from Santa where gifts were distributed. In addition, Pediatric rehab patients at Hughes Spalding enjoyed gifts and a party with FOHS volunteers. and activities that help to expand community awareness. Contact (716) 634-8132, or visit www.people-inc.org/museum/index .html. Brain and Spinal Injury Trust distributes funds The statistics are devastating: Traumatic Brain Injury is the leading cause of death and disability in children and young adults in America. The Brain and Spinal Injury Trust Fund was developed to assist individuals who have disabilities as a result of TBI and SCI. It is funded by a ten percent surcharge of all fines for driving under the influence convictions. The Trust Fund Commission distributes funds to qualified individuals, who have Kristin E. Vincent survived neurotrauma brain or spinal injuries. Kristen E. Vincent, executive director, says the first fund recipients, announced December 15, received an aver-age grant of $5,000. Vincent encourages qualified individuals to apply for the Fund. Georgia residents who have sustained a traumatic brain or spinal cord injury are eligible for funds for services that are not already paid for by Medicaid, Medicare, private insurance or other providers. For more information and to get an application, contact the Commission office at (404) 6515112 or visit Trust Fund website: www.bsitf.state.ga.us. Making A DIFFERENCE 13 OLMSTEAD continued from previous page Hampton, 40, diagnosed with epilep- sy, seizures and mild mental retardation, enjoys frequent group walks around the vast hospital campus, once the largest in the U.S. "I want a, I want a workshop job," Hampton murmurs as he warms up to his visitors. He too complains about the food there. "I want to go home to live with my mother and sister," Hampton says. "I don't like staying here. There is nothing here for me. I sleep; go to the day room, get snacks, and smoke." James' monthly Social Security check is consumed by the state for his care and maintenance. He and others receive a $30 monthly allowance for the purchase of clothes, toiletries, personal belongings and cigarettes. A former member of the church choir, James looks forward to a future outside the hospital, a job and driving again. "I miss that so much," he says. First to sue, last to implement? As Georgians like Hampton and Chenaultt remain unwillingly in hospital settings, Jamison predicts more legal action against the state related to the actual implementation of the Olmstead decision. Malaquias Chenault "Georgia is not willing to comply with the Supreme Court decision at this point," she says. "We don't have an Olmstead implementation plan." Gov. (Roy) Barnes signed an Executive Order in July 2002 committing to comply with Olmstead, but it lacks specifics for adopting a plan, she says. A plan has been drafted, but funding has not been allocated. "Disability is not cheap," says Mark Johnson, advocacy coordinator at Atlanta's Shepherd Center. "And a very influential lobby has a vested interest in making sure that the system remains institutionally biased." Johnson works with a statewide coali- James Hampton tion of agencies and advocates demanding National Implementation client control of Medicare dollars. "An A recent 50-state survey conducted by individual should be able to take the dollars the National Conference of State being spent on him and choose how they Legislatures shows that 40 states and the will be spent and who will provide services District of Columbia have task forces, comand where." If that were the reality, adds missions or state agency work groups in Johnson, more people would be able to place to assess current long-term care sys- leave institu- tems with an eye toward tions and contribute to our "I don't like developing Olmstead implementation plans. communities. Experts esti- mate that 270 staying here, there's nothing here for me. Eighteen states have plans or significant papers in development people are confined in long-term mental health units in Georgia; 1,500 I sleep, go to the day room, get snacks and smoke." with timelines and budg- ets. Mississippi, Missouri, Ohio, and Texas have been cited for having clear vision for sys- tems change that in state institutions for people with mental includes goals, timelines, budgets, and retardation and 40,000 Georgians receive agencies responsible for each strategy, the Medicare services in nursing homes. NCSL survey reports. While the Supreme Court recognizes With declining state revenues and budgthat states have budget limitations hinder- et shortfalls, Olmstead implementation is ing Olmstead implementation, advocates being encouraged through $64 million in have already determined how to increase its federal planning and or demonstration reach. They say grants designed to spur expanded commu- (1) Compile a list of institutionalized people with disabilities; nity-based services and options. "Olmstead is about Lois and Elaine and the thousands of others like them who have (2) Assess their needs carefully and fairly the courage and determination to live in the to determine the necessary supports; community," Jamieson says. "Choice is an American value. They showed what can be (3) Arrange those supports and services accomplished through litigation. Now is and move the people into communi- the time to identify the necessary resources ties in which they want to live. to implement the law of the land." 16 Making A DIFFERENCE What is Olmstead? Heard by the high court, April 21, 1999, the sion was appealed to the Eleventh Circuit case was first filed in 1995 by staff attorney Court of Appeals which also ruled in favor of Susan C. Jamieson, Atlanta Legal Aid Curtis and Wilson. Appealing finally to the Society, Inc., Mental Health and Disability Rights Project. The Olmstead Decision, U.S. Supreme Court for a reversal, Georgia state officials were later ordered to release the "Our position was that the Olmstead v. L.C. (Lois women to "community- State of Georgia should no longer provide disability services to mentally or phys- Curtis) and E.W. (Elaine Wilson) was the first based settings" and "provide the necessary community supports" for ically disabled persons in an institutional setting if he or she could be served in a U.S. Supreme Court case involving the "integration their successful integration. This local judicial deci- more integrated, community-based setting," Jamieson says. mandate" of the Americans with Disabilities Acts. sion reverberated across the country with officials in the nation's capital Atlanta Legal Aid sued the ordering all states across State of Georgia and the the country to comply Department of Human Resources with "Olmstead" and serve people with men- Commissioner Olmstead, winning a favorable tal and physical disabilities in community set- decision against state authorities. That deci- tings if they can be served there. Current efforts to implement Olmstead in the Peach state Convening the Olmstead Steering Committee on July 2, Gov. Roy Barnes projected about the efforts the state would make to implement Olmstead. Charging the Office of Planning and Budget with oversight responsibilities, he indicated that tight budget projections and reduced revenues would make the Olmstead Plan difficult to implement. Citing that the state was making "reasonable progress toward implementing the intent of the Olmstead decision," Barnes said in the 2003 budget year he would: Move all consumers under age 21 from state mental retardation institutions into community residential services (65 consumers at a cost of $4.1 million) Provide intensive intervention services for severely emotionally disturbed youth and their families at-risk of institutionalization (600 families at a cost of $3.0 million) Continue reduction of the community-based waiting list for CCSP (822 consumers at a cost of $4.1 million) and mental retardation waiver services (507 consumers at $8.0 million) Use grant funds to explore the state's ability to restructure existing long-term care delivery systems. On his short-term list, Barnes projected in July that he would: Create four state-run community homes for 40 hard-to-place, severely emotionally disturbed adolescents currently housed in state hospitals ($1,593,688). Transfer 13 eligible children in private nursing homes to community placements ($866,226). Provide transitional funding to move all consumers under age 21 from state mental retardation institutions into community residential services (65 consumers at a cost of $585,000). Develop criteria to prioritize the need for those waiting for community-based services, regardless of existing placement (institution or community). Improve the infrastructure and system capacity in order to meet the community-based needs of individuals with disabilities and older adults. Ensure the state has an ability to monitor and provide oversight of all community-based providers. Consumers served in the community should be safe and receive services appropriate to meet their needs. Making A DIFFERENCE 17 STATE ROUNDUP THROUGHOUT THE YEAR, DISABILITY COMMUNITIES AROUND THE STATE HONOR OUTSTANDING ACHIEVEMENT. HERE ARE SOME OF THOSE AWARDS: Albany ARC Awards 2002 Albany ARC 25 Year Service Award Community Service/Knights of Columbus Award 2002 Volunteer of the Year 2002 Special Recognition/ ARC Board of Directors 2002 Special Recognition 2002 Media Award Susan Folsom Larry Valis Anne Wilson Willie Williams Dr. Tom Paschal Dr Surendra Pandey Dr. Anthony Parker Myrna Moore, John Patrick Dee Cox - Albany ARC Consumer Advocate with Alan Burgess, recipient of Most Dependable Award/Personal Achievement, 2002. Southeast American Assocation on Mental Retardation Award for Individual Leadership, Ruby Gibbs Award for Aging Service, Case Resources Award for Agency Leadership Award for Individual Research, Martha DeHart Award for Individual Service, Deborah Rozzell DeKalb Developmental Disabilities Council Sonia Kuniansky, recipient of the Heart of Gold Award with AADD President Lauren McSwain Tana Brackin, Weekend Anchor of WAGA TV-5, presents Ron Vickery the Advocate of the Year Award at the AADD Banquet. Vickery, from Rome, advocated to get the 2002 telecommunications Distribution Program passed in the last legislative session. Atlanta Association on Developmental Disabilities 2002 Awards Heart of Gold Award The Bobby Dodd Award The Tommy Nobis Award The Mary Lee Brookshire Award The Bobby Rowan Award The Thomas J. Asher Award The Interfaith Disabilities Award Outstanding Professional Award Employer of the Year Award Employee of the Year Award Outstanding Individual Achievement Advocate of the Year Award Classroom Teacher of the Year Award Communications Award Sonia Kuniansky, Executive Director,DeKalb DD Council Saba Silverman, Chair, MJCCA DD Committee Robert Walker, President & General Manager, WXIA-TV ALTA Foundation Representative Buddy Childers Shenita Davis, Teacher, Parks Middle School Michael Moore Janet Deal, Chair, Aging Coalition Excelso Coffee Company Kevin Green Sheila Thomas Ron Vickery Maureen Wales, Fulton County Adaptive PE Teacher Making A Difference magazine 18 Making A DIFFERENCE TICKET TO WORK by Sally Atwell with Jody Steinberg Help Wanted navigating the benefits maze Social Security helps workers with disabilities Les Paul Morgan was recently hired "The program is completely volun- for the first time in over 17 years. The tary," explains Milstead. "The goal is to peer support counselor at Walton give consumers freedom of choice in Options for Independent Living in Augusta, who has not worked since his first of two aneurysms and resultant who gives them training and gets them back to work." brain injury, began his new career The ticket is a voucher for services as a volunteer. When Morgan from an approved employ- was offered a job, he didn't accept before "The ment network, which is any agency, employer sitting down with a qualified expert to plan how he could both work and maintain his critical benefits. Morgan receives ongoing benefits goal [of the or person who can provide the training ticket] is to give or job support consumers freedom necessary for an individual to of choice in who gives obtain and retain employment. them training and Tickets, will be advisement through Project 20/20, the gets them back delivered over the course of one year to work." Social Security Adminis- tration's program to increase employment of persons with disabilities. "When you go into Walton Options, based on social security numbers and first hit Georgia mailboxes November 15. Anyone wanting to receive their ticket right away can you immediately see people working call an administrator and request it. who have disabilities and are making a real difference in the world around us Earned Income Impacts Benefits and it's a beautiful sight," says Morgan. Earning limits, allowable resources, "Even though I suffer from chronic continuing disability reviews, SSI, SSDI, migraine headaches from the brain sur- Medicaid, employment related expens- geries, I can work, which gives me a new es, attendant care, medications and feeling of independence." transportation ... navigating the maze of "Working leads to self esteem and benefits and triggers to lose them con- fuller participation in the community," founds even experts. says Cindy Milstead, program manager Many people with disabilities are dis- for Project 20/20. "When people with couraged from working for fear of per- disabilities become part of the work- manently losing critical benefits, espe- force, everyone wins." cially when wages are insufficient to This year, every Georgia citizen aged replace the income or long-term 14-65 with a disability who receives employment could be hindered by the Social Security (SSI and SSDI) will disability. receive a special "ticket" in their mail- The Benefits Planning Assistance and box. The "Ticket to Work" is part of the Outreach (BPAO) program of the SSA Work Incentive Improvement Act was designed to encourage employment (TWWIIA) of 1999. TWWIIA updates and independence. In Georgia, the employment-related services for persons Shepherd Center, the Division of with disabilities by introducing con- Vocational Rehabilitation and Walton sumers choice benefit protections and Options for Independent Living provide planning services that encourage return- free benefits counseling services under ing to work and a free enterprise system BPAO to any person age 14-65 receiving called an employment network. Social Security Benefits (SSI or SSDI) because of a disability who is working or interested in working. "Employees with significant disabilities can still have benefits work for them," says Milstead. "For example, under the 1619B Work Incentive Provision, it is possible for SSI and SSDI beneficiaries to keep Medicaid health insurance when they go back to work." Know what works The primary goal of the free benefits counseling service is to educate SSI/SSDI beneficiaries with disabilities about the Social Security Work Incentives that are available to them so they can make informed choices about returning to work. Advisors meet with individuals to discuss various work scenarios, to sort through current benefit situations as well as to arrange and attend meetings with the Social Security Administration regarding beneficiaries' use of work incentives. BPAO specialists undergo rigorous training and in turn reach out to community organizations and employers to assure that consumers receive accurate information about maximizing benefits while pursuing employment Ultimately, benefits specialists hope to help individuals with disabilities around the state, in particular young adults in school-to-work transition programs, map out a strategy for employment and self-sufficiency. For Morgan, the benefits of working are far reaching. "I feel blessed to assist others," he says about his job. "To think I may have had anything to do with helping others reach for their dreams ... it is amazing!" To find out about benefits planning assistance services in your area in Georgia, contact Sally Atwell, M.S., CRC, LPC, at (404) 350.7589, Curtis Rodgers, M.S., CRC, LPC, at (404) 350.7598 or (866) 772-2726 (Shepherd Center); or Cindy Milstead at (706) 724-6262 (Walton Options). For more information about the national benefits counseling assistance and outreach services, visit www.ssa.gov/work. Making A DIFFERENCE 19 ASSISTED SUICIDE ... BACK Placing blame when By Eden Landow One day last June, Carol Carr walked into the Griffin nursing home where her two adult sons resided, pulled out a gun and shot each one in the head. Her sons were in the final stages of Huntington's Disease (HD), a fatal, degenerative neurological disorder which had taken the life of their father and which Carr's third son also has. What led the loving mother and wife to commit such a heinous act against her own sons? Was that her sons were incapable of caring for themselves or communicating? Was it the stress of all that the loving mother and wife had suffered in seeing everyone she loves succumb to the rav- ages of HD? Was it the way she thought her sons suffered from inadequate care in a nursing home that had been cited repeatedly for standards violations and patient neglect? Was it the isolation and frustration frequently experienced by family members and caretakers of people with disabilities and chronic illnesses? As the media descended upon the small town of Griffin, Carr was arrested and charged with two counts of malice murder. The public divided into camps: decrying the mother who had taken the lives of her own sons; and sympathizing for the victims of a disease which had, in the eyes of many, robbed Carr's sons of any quality of life, thus justifying her actions as a mercy killing. Comparing the ravages of Huntington's Disease to the cumulative effects of a host of other degenerative conditions, Carr supporters have called for "compassion, lenience and understanding for a loving mother," justifying her actions as a mercy killing brought on by desperate circumstances, isolation and all absence of hope. "If we were a caring community, as we could be, people in her situation would be seen as tragic and noble and worthy of community support," said Joanne Lynn, MD, MA, MS, director of the Washington Home Center for Palliative Care Studies POINT Carolyn Phillips: The system needs fixing I do not support mercy killing. But I have compassion for Carol Carr, and I believe that she should be judged with leniency. When Carr shot her sons, her actions came from a place of desperation, a place of isolation so extreme that it could easily distort one's judgment and create a mindset that is detached from the reality most people live every day. Carr's actions came from a love tortured by a lifetime of watching everyone she loved suffer and die slowly from a cruel, devastating disease. Those who have been a living widow or watched their child or parent die slowly can understand her despair. Every day, people are sentenced leniently for heinous crimes under the temporary insanity defense. Individuals who have been in Carr's situation can understand this defense, and the need to provide her with mental health treatment, not more jail time. If our system worked better and there was more funding for support services, then perhaps the Carr case could have been prevented. The real culprit is the lack of resources in the community. Once long-term health care assistance is accessed, family members have no con- trol over the quality of care provided, or not provided. Changes need to be made in skilled care and policies that support caregivers. Yet most of the nursing home staff is over worked and underpaid. Benefits are hard to access, as is a place in a nursing home once the person actually reaches the stage where it is needed. Efforts are under way to improve longterm care in the United States and chip away at the institutional bias in favor of the nursing home system - and its stockholders. The Lifespan Respite Care Act of 2002 and MiCASSA legislation are examples that should be embraced and supported. We must unite for positive system changes for people with disabilities. We must create more effective solutions for support before we legislate mercy killings. We must advocate for funding for progressive research. My mother is living with Huntington's disease. She lost her mother and both brothers to this rare genetic progressive disease. I have watched this disease slowly take over her mind and body. Her spirit is strong, her positive attitude is contagious. She is love in action, and she is dying every day. Imagine the person you love most...dying slowly every day as you watch. Your perspective has changed. Now imagine whole generations of your family dying as you watch for years. When faced with this reality, one person feels fear and despair and another person is driven to survive. For me, Huntington's disease has been a gift. I live every day, I know my time is valuable, and I focus my energy on helping others that happen into my life. I chose my career because I believe the work I do is important, no matter the salary. I have a list of 100 things I want to do while I can, and I actively work my way down the list. I try to live well, laugh often and show the people important to me that I love them. I am living-at-risk: Living is the key word here! Phillips is a founding member of the Huntington's Disease Advocacy Network, which is working to change support systems for people with disabilities in Georgia. She is also Project Director for ReBoot, Georgia's Computer Reutilization Project for People with Disabilities. 20 Making A DIFFERENCE IS IT CHOICE OR MURDER? GROUND tragedies happen nd Jody Steinberg and president of Americans for Better Care of the Dying in Arlington, Va. Murder is murder, asserts the cadre of disability advocates and members of the "Not Dead Yet" resistance who adamantly oppose killing persons with disabilities, calling it the ultimate form of discrimination. The "compassion" of medically assisted death is nothing more than thinly veiled contempt for people with disabilities, they assert, putting all of us at risk of being victims. Others in the disability community maintain that the real culprit is a system of care that often falls short of the most modest expectations; a system that favors facility-based care; where workers are undervalued, caretakers and family members have little support and long-term care options are inadequate. Carr's actions were a cry for help; an indictment of a system that is so broken that it is often puts the most vulnerable patients in harm's way. But what could have prevented this family from such devastation? People with disabilities and their families face mountainous hurdles every day, and most are not the physical aspects of the disability; they range from inadequate funding for inhome care to lack of support for caregivers to dismal alternatives in nursing homes. A better system of care might have prevented the Carr tragedy and similar crises playing out in nursing homes, hospitals and private homes every single day. "We need more unity from the community to improve support services and access to the services offered, especially in rural Georgia," says Amy Puckett of Macon, who felt isolated and unsupported while she cared for her ailing mother at home. "The resources to assist people with disabilities are not easy to access, especially if you are exhausted, frustrated and depressed." "Not a day goes by that I don't want to bring my mother home," from the nursing facility, Puckett adds. "But I do not have the emotional, social or economic support necessary to care for her." COUNTERPOINT Eleanor Smith: murder without consequence? Throughout the nation and particularly here in Georgia, the public has been focused on the criminal case against Carol Carr, who murdered of her sons. Andy, 41, and Randy, 42, who were in the final stages of Huntington's disease, looked down the barrel of their mother's gun as their last view of the world. Many people believe that Carol Carr should NOT be sentenced to significant jail time because she "has been punished enough by her life circumstances." They believe that Carol Carr acted out of desperation and a desire to end what she saw as the suffering of her sons. The facts of the case suggest no ulterior motive. The deaths are a tragedy for all concerned and an indictment of a shameful lack of support in a country that could well afford real support and real care. Nonetheless, our response to bad circumstances must not be to MURDER the VICTIM. That cannot be tolerated by society. The absence of a significant jail sentence would send a message that caregivers can kill vulnerable people without major legal consequence for themselves. The issue in this case is not punishment -- it is deterrent. Society would never suggest execution as a solution for the suffering of a starving person. Yet so often in the case of people who are terminally ill or suffering horribly from their disability, their murder is more acceptable to society. Too often, sympathy for the murderer whose presumed intention is to end that suffering overshadows the bigger picture. Also missing here is recognition of the injustice of a lack of adequate inhome services, which forces people into nursing homes rife with abuse and poor services. In these deaths, or so-called "assisted suicides," there is little concern for the murdered person's violent death; only sympathy for the lives they once lived. Deplorable circumstances are forced on people with disabilities and their families that are not caused by the disability but rather by the lack of compe- tent pain treatment or sufficient assistance, and the devaluation of individual. But killing the victim of deplorable circumstances is not an acceptable response. The outcome of this case is an important part of a larger picture. Without a significant jail sentence, a separate category of people is created: Frail elderly, persons with disabilities and the chronically ill people can all be murdered without consequence. Separating this from other murders with little or no jail time opens up the firing range for anyone overburdened by, or wanting the insurance money from, or saddened by -- their disabled child, spouse, sibling or parent. We -- myself and others with disabilities -- are in danger. A lenient jail sentence for Carol Carr is an endangerment to people with disabilities. Eleanor Smith, the founder of Concrete Change is a disability activist and chair of Not Dead Yet of Georgia. Making A DIFFERENCE 21 Making A DIFFERENCE Volume 3, Issue 4 Pre-Legislative Edition December 2002 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 and 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, N.W., 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 Making A DIFFERENCE EDITORIAL TEAM Yao Seidu, Editor in Chief yaseidu@dhr.state.ga.us Janice Nodvin, Executive and Managing Editor, May South Inc. Jody Steinberg, Senior Writer Stone Mountain Public Relations Contributing Writers Aileen Harris, Eden Landow, Petula Wright, Lisa Lilienthal Pattie Churchfield, Layout & Design Digital Technologies Inc. Daemon Baizan, Cover Photography Keith Middleton, Editorial Cartoonist DeNatalie Phillips, Promotions and Publicity Making A DIFFERENCE ADVISORY BOARD Dave Blanchard Atlanta Alliance on Developmental Disabilities Karen Carter, M.D. Medical College of Georgia Lucy Cusick Families of Children Under Stress Don Pollard Self Advocate Patricia Solomon Georgia Department of Education Division for Exceptional Students It is the policy of Making A Difference to publish readers' letters and editorial cartoons. Content does not necessarily reflect the opinions of the GCDD, the editors or state government. Send your opinions to makingadifference@gcdd.org or call (404) 657-2127 fax to (404) 657-2132. 22 Making A DIFFERENCE FROM THE EXECUTIVE DIRECTOR We had great promise yesterday we have high expectations tomorrow The last four years have been a learning experience for many of us. It began with a promise to address the growing waiting list for home and community-based services. As a result of the Unlock the Waiting Lists' Campaign advocacy and ini- tiatives in 1999 and 2000, 5,238 Georgians received services. The 2001 budget promised to be the largest single year increase in funding for residential services, but this was not realized as an economic downturn resulted in cuts and freezes. There was a Blue Ribbon Task Force and an Olmstead Steering Committee, both of which made many great recommendations, but little was implemented. So now we begin a new era for a new Georgia. In a recent letter to a constituent, Governor Sonny Perdue wrote, "As Governor, I will focus my efforts for reform- ing the system (of services for people with developmen- tal disabilities)." We in the disability movement are confident that we Eric Jacobson can use our experiences of the last four years to work with the new administration to see that these very important initiatives are implemented. But let's not start all over. We have many things to build on. Let our new mantra be Community First: Let's Implement Not Reinvent! Let us start with a vision that recognizes that people with developmental disabilities and their families want access to safe, affordable homes, real job opportunities, an education system that recognizes that all children have the opportunity to partic- ipate in all aspects of school life, and that people have real choices in their lives, including control over the resources that are used to purchase services. The sys- tem of services and support should reflect and promote consumer values of dig- nity, independence, individual responsibility, choice and self-direction. This means that people are the focus of funding and service planning rather than each individual service or provider. Implement, don't reinvent! The Purdue administration would be well served to follow the mandate created by the Olmstead Planning Committee: Every individual has the right to live in the most integrated setting with informed choice in the community using necessary supports. Every individual will be served in the least restrictive and least intrusive environment, allowing for full participation in all aspects of life. Every individual will have opportunities to exercise meaningful, informed choices of services, providers and staff. Every individual will have opportunities to choose the level of family involve- ment in decisions concerning his or her services and supports. Every individual will receive the highest quality of services, provided by staff who are competent and skilled. Services will be provided at the appropriate level of intensity, based on individual strengths, needs and choices. With this as the vision of our Governor, we should expect that it also is the vision of each department and office of State government - - from the Department heads located in Atlanta to the regional coordinators located around the state. We could then work together to develop a system that allows individuals and families to direct their own services and have the opportunity to purchase quality services. We could work toward more flexible home and com- munity based service funding, assistance to consumers in purchasing services through support brokerage and similar methods, expanding the supply of acces- sible housing, creating emergency back-up systems for personal assistance or other services, and assigning individuals the responsibility for developing their own service and budget plan. In schools, parents will be able to determine if they want their child included and expect them to receive a quality education. As we begin a new era with a new Georgia, we look forward to working with our new Governor to achieving this vision for all Georgians. Eric E. Jacobson, Executive Director, GCDD EDITORIAL Now more than ever it's important for Georgians to become advocates In this issue of Making A Difference magazine, we share the excitement of a new executive, Sonny Perdue, taking the reigns of state government. He has articulated during the campaign that he understands our issues as well as the perspective of history as it relates to our struggle. We outline the background and many of the issues relating to implementing the Olmstead decision. A detailed plan of action is in the works and we should expect timelines with financial projections as well as agency workplans in the future. Recreation and leisure activities are always of interest to Georgians with disabilities and their families. New accessible playgrounds, in addition to opportunities never before thought of for people with disabilities, are now attractive options. In relationship to transportation, we are in the best and worst of times. For those in rural communities, the opportunities of choice are severely limited by public sector enterprises that provide spotty services at best. In metropolitan areas like Atlanta, advocates are challenging the system that has limited capacity, infrequent schedules and operators untrained to accommodate customers with disabilities. But, there is an increased awareness of the issues of inadequate transportation available and local advocacy, network coordination and even legal action will facilitate systems change. Belt-tightening for all Georgians is now the order of the day. The advocacy community will continue to speak out -- helping lawmakers and policymakers understand that equity and fairness must be applied. The cutting of federal and state expenditures to the peril of citizens with disabilities should not be considered and will be met with resistance. Great opportunities and high expectations top the agenda for 2003. There is no reason to believe that a new administration will not be a positive force for positive change. Georgians are encouraged to stay informed, get involved and contact your local representative, letting them know how their vote affects your family. How To Reach Us Making A Difference LETTERS TO THE EDITOR s Letters should include the writer's full name, address, phone number, and may be edited for purpose of clarity and space. s email us at makingadifference@gcdd.org s fax us at (404) 657-2132 s Or you can send your letters to: 2 Peachtree Street, N.W., Suite 8-210, Atlanta, GA 30303-3142 SUBSCRIPTIONS/BACK ISSUES s Subscriptions/back issues can be accessed at our web site www.gcdd.org or call us (404) 657-2126 SPONSORSHIP s For sponsorship rates and our calendar visit www.gcdd.org or contact Tonya Harris at (404) 657-2127 tharris@dhr.state.ga.us Making A DIFFERENCE 23 LETTERS TO THE EDITOR Making a Difference Discovery Tour Highlights "ABILITY" of Georgians Early last year, I joined two co-workers Among them are: for what we thought would be a simple, Concrete Change, which 25-minute transit ride to a meeting in has helped pass a law stipu- downtown Atlanta. We arrived late lating any home built with because the trip took more than an hour, government funds must all because of the obstacles encountered have access for the dis- by my co-worker who uses a wheelchair. abled. That law now is The MARTA bus ride went off without a being modeled in other hitch, with the driver lowering and raising parts of the country. The the platform for my co-worker in the Historic District Develop- wheelchair. We were not so fortunate at ment Corp. is one Atlanta the rail station where we discovered that organization committed to the elevator was out of service. We found accessible development. help to stabilize the wheelchair carrying it via escalator to catch the train. The EasyLiving Home project, a program similar to Ed Phillips and Eleanor Smith lead tour. Remembering what happened, my the GoodCents program, friend in the wheelchair says the whole which certifies homes that are built for experience made him feel like an outsider visit-ABILITY. (See Summer 2002 and the incident was not an isolated one. I issue, Making A Difference) remember feeling both outraged and The disABILITY LINK, a CIL that helpless. Today MARTA is being provides support services to forced to improve service to people with disabilities. passengers with disabili- Among its activities are ties. Among the deficien- "I didn't think working with MARTA to cies cited in a recent civil action lawsuit filed I needed to be exposed to assure that the transit system complies with the against the MARTA tran- what the life of people ADA, helping people in sit system were failure to maintain wheelchair lifts and other features and fail- with disabilities is like." nursing homes move back to communities, advocacy training and transportation ure to announce stops at trans- monitoring. The CIL's under-funded fer points, major intersections and ramp-building program, is one of its destinations. most requested services. When I was invited to the Governor's DeKalb County's Montgomery Council on Developmental Disabilities Elementary School and Project "Making a Difference Discovery Tour" in WINS, leading the model of including October, I thought I already had the first- children who have disabilities in every- hand experience of what the life of people day school life. Special education and with disabilities is like. But I'm glad I par- general education teachers teach ticipated, because I learned of several together in the classroom. local organizations working to make sure Briggs & Associates, an employment that all people are part of the community. agency that trains and places people porations, customizing jobs to meet the needs of the individuals in each business. The Marcus Jewish Community Center of Atlanta, which provides opportunities for children and adults with disabilities to participate in social, recreational, camping and sports activities and travel. The American Association of Adapted Sports Programs Inc., a Georgia-based nonprofit group that builds interscholastic sports leagues for students with physical disabilities or visual impairments in grades one through 12. I also learned that, although these organizations are opening doors, Atlanta still has a long way to go when it comes to making sure that the community is accessible to all people. According to Mark Johnson, advocacy coordinator for the Shepherd Spinal Center, "It's up to all of us to take it personally ... what will you do to make a difference?" Wendy Bowman-Littler Atlanta Business Chronicle with disabilities in jobs at Atlanta cor- 24 Making A DIFFERENCE OPINIONS Making A Difference Magazine receives praise, recognition and award Dear Editors: Congratulations on a wonderful issue of Making a Difference. Great photos, design and writing in a magazine that performs an important service. Best regards, Kent Middleton Chair, Journalism Dept., Henry Grady College of Journalism and Mass Communication, University of Georgia Editor's Note The Making A Difference magazine and its staff was honored last month by the Atlanta Alliance on Developmental Disabilities. The publication received the AADD's prestigious "Communications Award" for its "Excellences and High Quality" in publishing. Aging DD coalition concerned with future Dear Editors: Leadership, I was reminded recently, comes with both candor and hope. Today's leaders earn respect and trust for being straightforward about where we stand today and for the ability to develop and share a vision of hope for where we must go. To move this vision forward, we must unlock collaboration with people that hold different keys. The cooperative process builds relationships along the road to progress, and opens doors we might not have anticipated. Three years ago, a group of folks in Atlanta began thinking about what will happen to those of us with disabilities who are growing older. They began by asking how will we ensure that services are seamless and respectful of each individual's dreams and choices throughout the lifespan. To help facilitate this dialogue, the Aging and Developmental Disabilities Coalition was formed. So far, the results have been remarkable, with a variety of organizations working together to sponsor workshops, lectures, and resources for families and professionals asking the same questions. At a time when so many fear the uncertainty for supports for Georgians, we must pause to recognize and celebrate the small victories, the pockets of excellence brought about through wonderful leadership. We must continually remind ourselves of the good work being accomplished by Georgian's with amazing vision, and that each of us has something to contribute to that good work. The Aging and DD Coalition has been one these pockets of excellence. Dave Blanchard Director of Public Policy Atlanta Alliance on Developmental Disabilities dave@aadd.org BEHAVIOR MANAGEMENT BIBLIOGRAPHY This bibliography includes a variety of book listings. The editorial staff of Make A Difference has not personally reviewed all of the listings and does not necessarily endorse this selection. See related article on pp. 6-7. Applied Behavior Analysis for Teachers, Fourth Edition By Paul A. Alberto and Anne C. Troutman Behavioral Intervention for Young Children with Autism: A Manual for Parents and Professionals Edited by Catherine Maurice; Co-edited by Gina Green & Stephen C. Luce Behavioral Intervention: Principles, Models and Practices Edited by Joseph R. Scotti, Ph.D., & Luanna H. Meyer, Ph.D. Communication-Based Intervention for Problem Behavior: A User's Guide for Producing Positive Change By Edward G. Carr, Ph.D., Len Levin, M.A., Gene McConnachie, Ph.D., Jane I. Carlson, M.A., Duane C. Kemp, Ph.D. & Christopher E. Smith, M.A. Families and Positive Behavior Support: Addressing Problem Behaviors in Family Contexts Edited by Joseph M. Lucyshyn, Ph.D., Glen Dunlap, Ph.D., & Richard W. Albin, Ph.D. Learning Disabilities and Challenging Behaviors: A Guide to Intervention and Classroom Mgmt. By Nancy Mather, Ph.D., & Sam Goldstein, Ph.D. Learning to Listen: Positive Approaches and People with Difficult Behavior By Herbert Lovett, Ph.D. Parenting the Strong-Willed Child: The Clinically Proven Five-Week Program for Parents of Two- to Six-Year-Olds By Rex Forehand, PhD and Nicholas Long, PhD Positive Behavioral Support in the Classroom: Principles and Practices By Lewis Jackson, Ed.D., & Marion Veeneman Panyan, Ph.D. Positive Behavioral Support: Including People with Difficult Behavior in the Community Edited by Lynn Kern Koegel, Ph.D., Robert L. Koegel, Ph.D., & Glen Dunlap, Ph.D. A Practical Guide to Solving Preschool Behavior Problems, Third Edition By Eva Essa Teaching Children with Autism: Strategies for Initiating Positive Interactions and Improving Learning Opportunities Edited by Robert L. Koegel, Ph.D., & Lynn Kern Koegel, Ph.D. Teaching Developmentally Disabled Children: The ME Book By O. Ivar Lovaas A Work In Progress: Behavior Management Strategies and a Curriculum for Intensive Behavioral Treatment in Autism Edited by Ron Leaf and John McEachin Young Children's Behavior: Practical Approaches for Caregivers and Teachers By Louise Porter, M.A. (Hons), M. Gifted Ed., Dip. Ed. Making A DIFFERENCE 25 CALENDAR JANUARY, 2003 National Birth Defects Prevention Month 13 2003 Georgia Legislature convenes 15 - 18 Assistive Technology Industry Association Conference Orlando, Florida (877) 687-2842 www.atia.org 15 Georgia ARC Network Legislative Conference and Reception Contact: Kamini Ramcharran, (404) 634-5512 arcgeorgia@earthlink.net 15 Interfaith Disabilities Network Contact: Mark Crenshaw at AADD (404) 881-9777 x231 mark@aadd.org 16 Mental Health Day (404) 433-2454 17 - 20 Southern Immersion Learning About Self-Determination Baton Rouge, Louisiana Contact: pcarver@chartermi.net 25 Employment, education, and guardianship training for Hispanic community Georgia Advocacy Office (404) 885-1234 www.thegao.org 24 - 26 2003 Indoor Winter Games Special Olympics Georgia (770) 414-9390 www.specialolympicsga.org/ 28 Blindness Awareness Day Diane Healy, (770) 399-9456 ldhealy@negia.net FEBRUARY 1 "The Long and Winding Road" Annual FOCUS Workshop Topics are behavior, wills & trusts, accessing resources, understanding testing, and family dynamics. (770) 234-9111 www.focus-ga.org 5 Healthy Mothers, Healthy Babies Day Legislative Breakfast 7:30-10:00 a.m. (770) 451-0020 www.hmhbga.org 6-7 Annual Mississippi Autism Spectrum Disorders Conference Featuring Carol Gray Hattiesburg Lake Terrace Convention Center, Hattiesburg, MS MARCH National Nutrition Month 13 Disability Day at the Capitol Sponsored by Governor's Council on Developmental Disabilities Contact: Danielle Doughman, (404) 657-2125, ddoughman@dhr.state.ga.us 19 - 20 Mississippi Early Intervention Conference: Innovation & Best Practice for Tomorrow Hattiesburg Lake Terrace Convention Center, Hattiesburg, MS 27 - 29 First International Conference on Positive Behavior Support Orlando, Florida Contact: (813) 974-0637 www.rrtcpbs.fmhi.usf.edu/rrtcpbsconference/confanncmnt.htm 10 Substance Abuse Legislative Advocacy Day Contact: Donna Dixon (404) 523-3440 20 - 21 Visual Strategies for Improving Communication & Behavior Atlanta, Georgia (248) 879-2598 www.UseVisualStrategies.com 27 - March 1 Seating & Mobility Symposium Orlando, Florida Contact: Linda Szczepanski E-mail: szczepan@pitt.edu Tel: (412) 383-6602 UPCOMING May 10-15, 2003 ADAPT's Spring Conference Washington, DC May 14-16, 2003 Annual Nutrition Conference Pre-Conference on Cerebral Palsy Post Conference on Prader Willi Syndrome Contact: Janice Nodvin (770) 956-8511, x 207 May 15-16, 2003 Aging Coalition Conference Contact: Sonia Kuniansky (404) 508-7796 26 Making A DIFFERENCE RESOURCES ADVOCACY The ARC (301) 565-3842 Web: www.thearc.org Atlanta Alliance on Developmental Disabilities (404) 881-9777 Web: www.aadd.org disABILITY LINK (404) 687-8890 Web: www.disabilitylink.org The Georgia ARC Network (404) 634-5512 Web: www.arcga.org Governor's Council on Developmental Disabilities (404) 657-2120; (888) 275-4233 Web: www.gcdd.org Parent Educating Parents & Professionals Inc. (770) 577-7771; (800) 322-7065 (Georgia only) Web: www.peppac.org Parent to Parent of GA Inc. (770) 451-5484 or 1-800-229-2038 Web: www.parenttoparentofga.org BEHAVIOR MANAGEMENT Adaptive Learning Center (770) 509-3909 Behavior Intervention Plan Address the Special Education Coordinator in your County Emory Autism Resource Center (404) 727-8350 Web: http://www.emory.edu/ FMD/web/autism.htm Marcus Behavior Center (404) 419-5000 Web: www.marcus.org May South, Inc. (770) 956-8511 Web: www.maysouth.org INDECPEENNDTEERNSTFLOIVRING: Georgia's SILC (770) 270-6860 Web: www.silcga.org Disability Action Center of GA (404) 687-8890 Independent Living Research Utilization Program (ILRU) (713) 520-5785 Web: www.bcm.tmc.edu/ilru/ Georgia Advocacy Office (404) 885-1234 or (800) 537-2329 Web: http://thegao.org/ Living Independence For Everyone (LIFE) Savannah (912) 920-2414 Web: lifecil.com Bain, Inc. Bainbridge (229) 246-0150 Walton Options for Independent Living Augusta (706) 724-6262 Web: www.waltonoptions.org Disability Connections, Inc. Macon Email: kilby8494@aol.com (912) 741-1425 Governor's Council on Developmental Disabilities (404) 657-2126 Web: www.gcdd.org/pi/olmstead/olmstead_release.htm RECREATION AND SOCIALIZATION Access to Recreation AccessTR.com (800) 634-4351 Web: www.accesstr.com American Association of Adapted Sports Programs (404) 294-0070 Web: www.aaasp.org Access Center for Independent Living Gainesville (770) 534-6656 Web: www.accesshall.org Southeastern PVA, Inc. (SC-CIL) Hephzibah (404) 921-5822 OLMSTEAD ADAPT (303) 733-9324 Web: www.adapt.org/olmstead. html or adapt@adapt.org The ARC (301) 565-3842 Web: www.thearc.org/olmstead_ decision.html Atlanta Legal Aid Society , Inc. Mental Health and Disability Rights Project Susan C. Jamieson, Staff Attorney (404) 524-5811 Centers for Medicare & Medicaid Services Baltimore, MD (877) 267-2323 Web: http://www.cms.gov Boy Scouts of America Web: www.scouting.org Clayton County Parks & Recreation Therapeutic Division (770) 996-4156 Cobb County Parks, Recreation & Cultural Affairs Therapeutic Recreation Services (770) 819-3215 Girls Scouts of USA Web: www.girlscouts.org Little League Challenger Division East Marietta League -(770) 528-8808 Roswell League -(770) 594-1868 Marcus Jewish Community Center of Atlanta (770) 395-2601 Web: www.atlantajcc.org Miracle League of Rockdale County (770) 922-0413 Web: www.miracleleague.com Shepherd Center Inc. (404) 352-2020 Web: www.shepherd.org Emory University School of Law Web: www.law.emory.edu/ PI/ALAS/olmstead.htm Special Olympics Georgia (770) 414-9390 Web: www.specialolympicsga.org TRANSPORTATION Department of Human Resources Transportation Services Section Region 1, Floyd Rome (706) 802-5389 Region 2, Hall Gainesville (770) 532-5365 Regions 3A & 3B, Fulton Atlanta 3A: (404) 463-6090 3B: (404) 463-6092 Region 4, Lamar Barnesville (770) 358-5244 Region 5, Clarke Athens (706) 227-5306 Region 6, Bibb Macon (478) 757-2530 Region 7, Richmond Augusta (706) 721-6975 Region 8, Sumter Americus (229) 931-5063 Region 9, Dodge Eastman (478) 374-6439 Region 10, Dougherty Albany (229) 430-1602 Region 11, Ware Waycross 912-338-5955 Region 12, Chatham Savannah (912) 691-6212 Central Office DHR Help Desk (800) 764-1017 US Department of Transportation Surface Transportation Reauthorization (800) 647- 5527 Web: www.fhwa.dot.gov/ reauthorization Making A DIFFERENCE 27