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 Fall 2003 Autumn 2003 www.gcdd.org www.gcdd.org Leonard Roscoe Making Choices SELF-DETERMINATION GEORGIA TAKES ON NEW FRONTIER Service Searching? Choice is the key to quality care Medicaid Madness Making sense of impending cuts A quarterly magazine that focuses on developmental disability issues in Georgia Making A DIFFERENCE Volume 4 Issue 2 Fall 2003 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 Jody Steinberg Assistant Editor Patricia M. Brown Maynard Eaton Heidi Fernandez Lily Keilhauer Mary Kissel Contributing Writers Daemon Baizan Photography - Cover Feature Lora Ho Cover Design Keith Middleton Cartoonist Design & Layout: DIGITEK Stephen Dubberly Publication Designer 2 Making A DIFFERENCE From the Executive Director Self-Determination is Not an Option It is time for Georgia to fundamentally reshape how services and supports are provided to people with developmental disabilities and their families. As policymakers discuss budget concerns and Medicaid reform, one concept that should be implemented is self-determination. Giving people more control to determine the supports they receive and to choose who provides those supports will result in both a better quality of life for service recipients and a service system that is more responsive and accountable. "The goal of self-determination from its origins is simply the ability of a person with a disability to craft a meaningful life in the community, overcome the effects of poverty, and experience deep and lasting relationships," writes Thomas Neirney of the Center for Self-Determination. During the past few years, self-advocates from People First have led the effort to bring self-determination to Georgia. The Governor's Council on Developmental Disabilities and others have engaged consultants from across the nation to help us evaluate our approach to self-determination. We've convened people to find out what they want and sought funds to help us address their concerns. Legislation has been introduced to mandate self-determination, but in reality, people still do not have the option to selfdirect their own supports. The system of services and supports for Georgians with developmental disabilities and their families should reflect and promote consumer values of dignity, independence, individual responsibility, choice and self-direction. Funding and service planning should be focused on people first, rather than services or providers. Individuals should have access to real homes, real jobs, real learning experiences, and real choices in their lives. I believe that the timing is right for this to happen in Georgia. Gov. Perdue has said that he believes individuals should have greater control over resources to determine who will provide their supports. The governor agrees that this will result in a better quality of care and quality of life for individuals. To demonstrate his support of self-determination, Governor Perdue directed the Department of Human Resources Commissioner Jim Martin to work with the DD Council to develop a pilot project to identify regulatory barriers to consumer-directed supports and learn how to implement an effective plan of self-determination. On April 25-28, 2004, Georgia will host the national Learning Immersion About Self-Determination Conference offered by the Center for SelfDetermination. People from across the country will come to learn and create plans for improving self-determination in their states. Over the next few months, I challenge each of you to write or call the governor, legislators and other policymakers such as regional coordinators. Tell them that we want what other states have a system where people come first, have control over decisions that affect their lives, and are self-determined. Then ask them to attend the conference. The time has come to stop studying and start doing. I say it is time to have self-determination in Georgia. Eric E. Jacobson Executive Director, GCDD Making A DIFFERENCE Volume 4, Issue 2 Fall 2003 TABLE OF CONTENTS Features 14 Self-Determination Georgia takes on new frontier. 6 Medicaid Madness Georgia recipients brace themselves for governmental cuts. 11 Searching for Services 14 Choice is the key to quality care. In Each Issue 4 Letters to the Editor 19 Our Sponsors 20 Resources 21 Calendar 6 Departments 2 From the Executive Director Self-determination is not an option. 5 Consumer Review Books that make a difference. 8 Opinions: Point/Counterpoint Does it take a village or community to live independently? 10 News & Events Paralympic athletes sue USOC over benefits. 18 Straight Talk Janis Shapiro uses creativity to inspire others. 19 Tips Promote self-determination in youth with disabilities. 10 11 19 Fall 2003 3 Letters to the Editor A Value to Our Community The quality of Making A Difference magazine is just very high, exceptional. The cover, photographs and stimulating articles make it a fine publication and a good read. I recently visited the College of Education at Auburn University (Alabama) and shared copies of the publication with educators there. Your feature on inclusive education and the Point/Counterpoint on Inclusive vs. Self-Contained classes has been a discussion we have had for years. Your magazine is timely and informative. Making A Difference magazine is a value to our community. Please keep your standards and quality high. More people outside of Georgia are reading your publication than ever before. Congratulations. Joyce Ringer Former Executive Director, Georgia Advocacy Office Inclusion vs. Self-Contained Classrooms I enjoyed the Point/Counterpoint article on "Inclusion vs. Self-contained Classrooms" in the Spring 2003 issue. The development of inclusion is important, bit it is even more important to meet each child's individual needs. Simply put, some children have more success in a self-contained classroom. I hope Gwinnett County continues to look at the individual needs of its special-needs students instead of assuming they all learn and succeed in the same way. Kim Mynatt Parent For Parent Education I enjoyed reviewing the publication Making A Difference and would be delighted to be added to your mailing list. We have several exam rooms, and I will be placing the current issue in my exam rooms for parent education. Robert W. Bruce, M.D. Pediatric Orthopaediatric Surgeon Special Education in Dawson County I am the parent mentor for the Dawson County School Systems. I was recently given a copy of the Spring 2003 issue of Making A Difference. There is so much good information in this quarterly that needs to be made available to the parents of children receiving special education in Dawson County. I would very much like to keep issues of it in the library. Would you please make it available to parents by providing me a subscription? I would also like to have your permission to include articles or portions thereof in information I distribute. I maintain parent mentor information in the Dawson County web pages and also produce handouts for parents. A handout I am currently developing, "Okay, We Have Written An IEP; Now What?" In this handout I would very much like to include the "Your child has rights; you as a parent have responsibilities." article on page 7 of the issue referred to above. Thanks so much, and keep up the good work in Making A Difference. Bob Abernathy Parent Mentor, Dawson County Schools Kudos to Making A Difference I just want to say a really big thank you for the facts and information published in Making A Difference magazine. As an advocate, the magazine makes great contributions in terms of providing a wide range of information on disability issues and resources. It is very important that everyone parents, self-advocates, teachers and interested persons be provided with information to make informed choices. You can't make those decisions if you don't have the facts and information. Making A Difference magazine provides that resource and information base. Congratulations on a great job. Heidi Fernandez Partners in Policymaking Class of 2003, Governor's Council on Developmental Disabilities Board Making A Difference Advisory Board 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. 4 Making A DIFFERENCE Consumer Review `For the Children' By Rob Langston, LD (learning disabled) Reviewed by Heidi Fernandez In his book "For the Children," Rob Langston, an individual with a learning disability, walks us through his accomplishments and struggles, providing us with formulas that worked and those that were not such good ideas. Rob credits his success and attitude to his "Momma." As a parent, I found it very powerful that his mother's goal was to always protect his self-esteem. Rob says the most important lessons are to give students what they need in order for them to learn in their own way and to foster their self-esteem. Rob states that his "100-year goal" is to change the education system. "My vision for the education system is that it becomes an environment of accept- ance, an environment in which it is okay to be different, okay to learn differently, and okay to tell the truth and ask for help," he says. "This is the way we develop `lifelong learners,' and I believe that lifelong learning should be the goal of the education system." This is a must-read book for parents, professionals and individuals with a learning disability. It is an inspiration to me to provide strength and encouragement to continue to advocate for Andrew and all children in Georgia. "Everyone with learning disabilities must discover his or her own way to being a happy, productive citizen," Rob writes. "My hope is that this book will inspire you to do just that." `My Extra eXtra Special Brother' "My Extra Special Brother" is a book about life's relationships and how to cope with them. It looks at the sibling bond between Scott, who at the age of 9 was diagnosed with Fragile X Syndrome, and his sister, Carly Heyman. We see their story through the eyes of Carly, who guides us through the lifecycles of their childhood, adolescence and young adulthood. When Mr. and Mrs. Heyman told then 4-year-old Carly about her brother`s disability, she didn't understand what they were saying. To her, Scott was simply the brother she loved and bonded with closely. By Carly Heyman Reviewed by Lily Keilhauer However, later Carly realized her brother was different. Yet, she learned his differences and accepted them as normal for Scott. Carly learned about her brother's comfort zones, learning problems, and how to introduce him to new friends. The Heyman family has filled Scott's life with love and support. He has learned a lot from them and they from him. The book is informative and insightful. Although there is no template to follow in this situation, the book provides us some good examples from which to learn. `Learning Re-enabled' By Susan Orloff, OTR/L Reviewed by Janice Nodvin "Learning Re-enabled" is a practical guidebook and resource for parents of children with learning disabilities and for the teachers who work with them. Susan Orloff, the parent of three children with learning disabilities, is an occupational therapist and former resource teacher who has mastered the public educational system. Her unique perspective enables her to explore the issue from all sides of the student support team. She encourages constructive, non-con- frontational collaboration for the success of each child. The book helps prepare for a productive Individual Education Plan process, simplifies technical terms, and provides descriptive tables to illustrate milestones and learning goals. "Learning Re-enabled" also encourages a realistic approach to helping each child feel confident and successful. This book is recommended as a useful reference book for the home library. Fall 2003 5 Medicaid Madness By Maynard Eaton Georgia recipients brace for governmental cuts T o grasp the dynamics, dwindling dollars and dramatic debate swirling Evan Nodvin is one such Georgian still waiting for about Georgia's Medicaid his waiver. At 24, program is to under- Evan, who has stand the conse- Down syndrome, quences of pro- is employed and posed and lives in an apart- pending cut- ment with a room- backs for peo- mate. He requires ple with dis- minimal personal abilities. support to main- A federally tain his independ- and state-fund- ence. However, ed health care because his dis- safety net for ability and current citizens who are situation are not poor, aging, considered criti- or disabled, cal, he has been Medicaid pro- on the waiting list vides a way for for six years people who unable to secure a can't afford waiver slot. private health Georgia Legislators poised to tame the Medicaid dragon "To be success- insurance to ful, Evan needs personal-care support, but because he is not in cri- receive quality health care. sis and because he has a stable family support he has not moved up All states are mandated to provide long-term care for people with to the top of the list," says his mother, Janice. "Now I am concerned disabilities in nursing homes and institutions. A decade or so ago, the that with cutbacks he will slip through the cracks and be forgotten." federal Medicaid agency created a home and community-based Currently, the entitlement on both the federal and state level is waiver that put aside the requirements of institutions and nursing financially strapped and imperiled. State and federal funding for homes in lieu of community homes. Medicaid benefits total $5.8 billion, according to Andy Boisseau Economics make the waiver the preferred choice. For example, with the Georgia Department of Community Health. But, that instead of paying 100 percent of the cost of care, the federal gov- budget is shrinking. In fiscal year 2005, which begins July 1, 2004, ernment reimburses states 60 percent of the cost of a waiver. the deficit is projected to be $1 billion, including $405 million in "Waivers are critical, incredibly important [because] they allow state funds. people with disabilities not to be warehoused," says Beth Tumlin, In addition, Boisseau says his department, like other state agen- an advocate parent of an adult child with a disability and chair of cies, must adhere to Gov. Sonny Perdue's demand to cut budgets Georgia's Unlock the Waiting Lists! Campaign. 2.5 percent this year and 5 percent next year. That amounts to $100 Georgia ranks 44th in the nation in funding for community million, including $40 million in state funds for fiscal year 2004, and services. As of May, there were 4,353 people with developmental $354 million, with $144 million of it in state funds next year. disabilities still "waiting" on waivers for home and community- based services. Medicaid: Its History and How it Works Medicaid, known as Title XIX of the Social Security Act, is a federal/state entitlement program that pays for medical assistance for certain individuals and families. It became law in 1965 as a cooperative venture jointly funded by the federal and state governments (including the District of Columbia and the territories) to assist states in furnishing medical assistance to eligible needy persons. Medicaid is the largest source of funding for medical- and health-related services for America's poorest people. Within broad national guidelines estab- lished by federal statutes, regulations, and policies, each state (1) establishes its own eligibility standards; (2) determines the type, amount, duration, and scope of services; (3) sets the rate of payment for services; and (4) administers its own program. 6 Making A DIFFERENCE "We see a massive train wreck "We need to appoint a bipartisan panel represented about to happen, and our by leaders who have direct responsibility for the Medicaid loved ones are on the train." program, [and] charge them with making recommenda- -Beth Tumlin tions for reform and imple- menting the recommenda- tions which come from "There population's most vulnerable. process audits and financial audits," says are three "In Georgia, [if this is] fully phased in, it Reed. "We have to take politics out of this basic ways could mean almost 100,000 children losing issue as it is literally life and death." you can coverage, a little over 32,000 people with It is going to be a lot of pain and chal- i m p a c t disabilities losing coverage, almost 17,000 lenge to get an acceptable answer. It is an Medicaid seniors losing coverage, and approximately issue that every state across the country is in terms 27,000 other adults who are not 65 or have grappling with. of reduc- disabilities could also be cut," warns Ron Seemingly, parents of people with dis- tion," Boisseau explains. "One, you can Pollack, executive director of Families of abilities are at the cusp of calamity. The reduce the benefits. Two, you can elevate USA. "People with disabilities of course are federal government is threatening major the eligibility requirements so that you likely to suffer more because they have a far cuts. The state is poised to make severe have fewer people that are eligible for greater need for health care. If they are cut cutbacks and tinker with their Medicaid Medicaid. Or, three, you can cut some of from Medicaid they essentially lose their program, but the ax has yet to fall. the programs." health lifeline." "We're bracing for a major blow," The state levied a ten percent Medicaid The fact remains, Georgia's Medicaid Tumlin warns. "We see a massive train cut on hospitals and doctors this budget costs are escalating and elected officials wreck about to happen, and our loved cycle that state health officials say has are bent on taming a dragon whatever ones are on the train." been absorbed with virtually no deleteri- the short-term human cost. ous impact to current recipients. Not so, "We are going to have to manage argues Tumlin. through this fiscal crisis," says State Sen. Scope of "A ten percent cut in the rate for home- Kasim Reed (D-Stone Mountain). "To and community-based services for people make sure people who need help, get help, Medicaid Services with disabilities in the amount of we're going to have to focus on these pro- $8,026,108 state dollars means Georgia would lose $12,039,162 in federal Medicaid dollars," says Tumlin, who also serves as president of ARC of Georgia, an advocacy organization for people with disabilities. Cuts are happening around the country, where budgets must be slashed. Federal grams and remove layers out of these programs that are not touching people's lives." Between 15 to 20 percent of Georgia's budget is dedicated to Medicaid funding, and that number is reportedly increasing. Critics argue Medicaid is likely to grow at such an alarming rate, it could conceivably consume and control the state budget. Medicaid, Title XIX of the Social Security Act allows flexibility within the state plans. However, some federal requirements are mandatory if federal matching funds are to be received. A state's Medicaid program must offer medical assistance for certain basic prospects are much more potentially "Medicaid is an interesting issue and a services to most categorically needy petrifying. As Congress debates whether difficult issue," offers Dylan Glenn, exter- populations such as: additional funding should be given to nal affairs attach for Gov. Perdue. "And states to help pay for their cash-strapped one the state has got to get its arms Diagnostic services Medicaid programs, a report by the health around because it is one of the fastest- Clinic services care consumer organization, Families USA, growing line items in the state. We ought Intermediate care facilities for the mentally states that an alternative proposal could not be afraid of being creative about ways retarded (ICFs/MR) cause millions to lose health coverage. to address it." Prescribed drugs and prosthetic devices According to the report, the Bush adminis- Reed agrees with Glenn's "creative" Optometrist services and eyeglasses tration's proposal would result in nearly a approach. He recommends hiring outside Nursing facility services for children under half-trillion-dollar loss of public health consultants to help streamline the Medicaid age 21 funds over the next 10 years. process and reduce redundancies in the sys- Transportation services In 2004, under the proposed plan, tem. Reed says that outside consultants Rehabilitation and physical therapy services Medicaid and the State Children Health have saved Atlanta taxpayers millions. Home and community-based care to Insurance Program would be cut by $8 bil- In addition to a financial audit of the certain persons with chronic impairments lion, or 3 percent. In 2009, the funding Medicaid system prior to cuts, Reed also reduction would be $49 billion, or 10 recommends appointing a panel to reform percent. This reduction would affect the the system. Fall 2003 7 Opinions Mary Kissel Mary Kissel is the parent of an adult son with disabilities who lives in his own home. She is the founder of Georgia Options Inc., an Athensbased nonprofit provider of personal support to people with disabilities and has focused her priorities on issues of inclusion and quality of life. Mary was recently recognized as Advocate of the Year by the GCDD. The opportunity to live in your own home and have control over your life is a person's right...a basic human right. Georgia Options 706-546-0009 exec_gaoptions@bellsouth.net www.arches.uga.edu 8 Making A DIFFERENCE POINT Living in Your Own Home By Mary Kissel I have always believed that the struggle of people with disabilities to live an ordinary life in the community is at its core a human rights struggle. I have never heard anyone say they wished to live in an institution. I have never heard any aging persons say they looked forward to going to a nursing home, even though they say they do not want to be a burden to their families. And I have heard parents say they want their family member with disabilities in an institution, but I have never heard a single person wish this for him or herself. I am not attacking good people who work hard providing institutional care. Rather, I am asserting that, whatever other needed services institutions currently provide, they are not acceptable substitutes for homes. When I reflect on what "home" means to me, I realize having a home is a fundamental human need. When I consider how few adults with disabilities have the opportunity to live in their own homes, the enormity of this injustice hits like a kick in the stomach. Who among us has authority to exclude a whole group of people especially our most vulnerable citizens, who would surely benefit the most from this source of stability, security, permanence and safety? Let me be clear. Small facilities located in the community are not homes either. Part of the reality of home for an adult is having your own key, having some say over who else lives there and what goes on there, having privacy and freedom to do routine things on your own terms and in your own time. Your own home usually means that as long as you are law-abiding, no one has authority to make you move. So it is not enough to "place" people in the community. Our work needs to be about supporting people to create and sustain their own homes. With our support, they can then begin the work of finding their rightful place as valued members of the community. I am not naive. Some homes are not automatically good places. But, when supported with vigilance, integrity and creativity, people who live in their own homes seem to thrive. I have seen this happen over and over again within Georgia Options, a small supported living agency in the Athens area. I have seen it with my own son Eric, who, despite needing total assistance, has lived successfully in his own home for 11 years. Many people work together to make this possible, and the work is never done. We always have challenges to face and problems to solve. But we also experience fun and excitement, pleasure, pride, genuine respect and friendship in short, the remarkable achievement of an ordinary life. At the core of this achievement lies the certainty of home not his parents' home or the agency's home, but his very own, where we hope he will be able to live the rest of his life. This is an achievable dream, not just for my son, but for all people with disabilities as long as they have adequate, flexible support, including provisions for various kinds of crises. I did not invent this powerful idea. I learned about it from inspiring teachers, and I have spent the past decade testing it out in real life. So have thousands of others across the country. Results consistently show that when people have choice, freedom, respect and the opportunity to construct a life that makes sense, they flourish. We should not be surprised. This is, after all, what we would want for ourselves. I'm not saying this is easy. People's lives are complex, and we have inherited a complex system in response. We have to make many changes in our attitudes, understanding, rules and systems. We need opportunities for dialogue, study, continuous learning and careful planning. We need to rethink the issue of choice not as a smorgasbord of service-delivery models, but as what actually happens in a person's life. We have to know each person well enough to design good supports with that person instead of making yet another program. We cannot guarantee a perfect life for everyone. But disability is not a crime, and we cannot easily restrict people's freedom in the name of protecting them. The opportunity to live in your own home and have control over your life is a person's right. This right is not based on functional level or on our benevolence. It is, rather, a basic human right. Supporting this right and working together to make it possible are our important tasks. If we commit ourselves to these goals, we may become inspired to the ennobling values that surround the work. In the process, we just might help to create a better world for us all. CounterPOINT Sometimes it Takes a Village By Patricia M. Brown C ome tour a small southern village: similar to others you might have visited; yet unlike anything you have ever seen. The people here share in all of the activities of life, but at a different pace. They work, learn, play, hold village meetings and elections, volunteer, visit with neighbors and friends, travel and experience life's ups and downs just like people everywhere. There are no gates or fences or other physical barriers separating this town from the neighboring communities. Some call it a "self-contained community." Others see it as another choice the best choice for them, and it is home. This customized environment with special and individualized programs and services best suits their personal needs. At Suwaneebased Annandale Village, the population totals 102. There are a variety of living arrangements for residents houses, semi-independent and independent apartments, and a very unique nursing home with staff trained in motivational techniques for the developmentally disabled or brain injured. There is a farm, a social center, a chapel, and a programs center for residents and for those registered in day programs for activities, work programs and training. It is a community where employees daily head to work. Some people attend educational or arts classes, while others go shopping, to the movies, to worship services of their choice, even events held in the vicinity, or health appointments. Just like any community, the citizens represent a variety of ages, interests and backgrounds. They share one common bond; they have been diagnosed with a developmental disability or a traumatic brain injury. With the support of staff and their peer group, they are challenged to be the best and most independent they can be. The members of this community gain friendships, encouragement, and understanding from one another and from the staff, available 24 hours a day. If someone gets sick or takes a fall, there is always help available. If someone is not getting along with their housemate or just needs to talk, their case manager or houseparent is readily available, as is the food-service staff, the office staff, the health-services staff, the programs staff everyone supports the citizens in any way needed some days the support needed may include shopping for shoes or groceries, a listening ear or just to be left to go on about their day's activities because they don't want to talk about a bad day. They are encouraged to participate in every aspect of their lives and live as independently as they can with the confidence that the support system is there for them. Annandale's European village concept is successful because the programs and services are individually designed to meet the unique needs of an adult. People who experience complex challenges are best served through programs and services that have been created through a collaboration of their families, doctors, professional staff and their input to reflect their own distinctive characteristics and desires. Villagers who were once viewed as depressed, withdrawn, dependent and unmotivated have become social productive citizens with independence developed well beyond their family and friend's expectations. The Annandale Village concept provides a community alternative for habilitation opportunities for adults with developmental disabilities, so that they can develop and maintain their independence and maximize their abilities within a safe and happy environment designed to be as least restrictive as possible. It's freedom within structure. Opinions Patricia M. Brown Patricia M. Brown is the executive director of Annandale Village. She is also the parent of an adult with a developmental disability. Ms. Brown is proud of the secure atmosphere Annandale provides for its villagers and is pleased that Annandale Village offers an option for living outside of the family home. ...they can develop and maintain their independence and maximize their abilities within a safe and happy environment designed to be as least restrictive as possible. Annandale Village 770-945-8381 administration@annandale.org www.annandale.org Fall 2003 9 News & Events GCDD Recognized State Leaders Paralympics Athletes Sue USOC over Benefits Scot Hollonbeck of Atlanta, Jose Iniguez of Illinois, and Jacob Heiveil of Washington are three wheelchair athletes who are suing the U.S. Olympic Committee for violating the Americans with Disabilities Act and the Rehabilitation Act by not providing Paralympic athletes with equitable benefits. The suit claims that the USOC doesn't provide Paralympians with health insurance, grants, promotional support or living expenses comparable to those provided USOC athletes. The USOC spends about 3 percent of a $491.5 million quadrennial budget on Paralympics, according to the Associated Press. The Governor's Council on Developmental Disabilities of Georgia held its annual awards ceremony in Atlanta this July. Outstanding leaders were recognized for their ongoing commitment to promote the disability agenda in our communities and strive for best practices. State Sen. Tommie Williams and Rep. Wallace Sholar won the Legislators Award, while Mark Johnson, advocacy director of the Shepard Center and Mary Kissel, founder and former executive director of Georgia Options, a supported-living agency in Athens, took home the coveted Advocate's Awards. Kissel encouraged families, providers and government agencies to work together in a true partnership to develop the resources to support Georgians with disabilities. Reporter Don Schanche Jr. of the Macon Telegraph was recognized with the Media Award for his series on mental illness and other investigative reports on disability issues in Georgia. Georgians With Wheeler's is one such marcher. Disabilities Trek to D.C. "We've have to insure that future generations of people with disabilities will not Disability rights activists from Georgia be force into nursing homes to receive went to the nation's capitol demanding services," he says. "Many of us are able- that the Medicaid program as we know bodied, in fact we are models of physical today be reformatted to be fitness. Why would a person more "disability consumer friendly." The "March on Congress," was designed to challenge law- "Many of us are able-bodied, in fact we are like me need to be forced into a nursing home to receive services and support?" he questions. "We are disability rights makers to act on legislation models of physical activists first," says Mark that will allow people with disabilities to receive long- fitness." Johnson, advocacy coordinator at the Shepherd Center. term care and services in their "We need this legislation own homes. March and rally participants are passed. We are going to get this measure working for the passage of S971 and H.R. passed and as a result, Medicaid funded 2032, MiCASSA (Medicaid Community-based services will be available to a greater number Attendant Services and Support) legislation. of Americans with disabilities." Tony Perrone of North Georgia Disability Employment and Mentoring Month America Works Best When All Americans Work is the official theme for October's National Disability Employment Awareness Month, created to raise employer awareness and drive interest to include people with disabilities in the work force. As part of NDEA, Oct. 15 has been designated Disability Mentoring Day, which will bring students and job seekers with disabilities into the workplace for a firsthand look at career opportunities. To find out about mentoring opportunities in Georgia, contact Lee Miller or Andrew Weaver, Georgia Committee on People with Disabilities, at (706) 324-2150 or aw2314@aol.com. Or, visit the AAPD Web site at www.dmd-aapd.org. For more information on NDEA, visit www.dol.gov/odep. 10 Making A DIFFERENCE Searching for Services Choice is the Key to Quality Care By Jody Steinberg L ife has not always been easy for Rita Moore and her two boys, who have autism. But, when she heard of the natural supports waiver, Moore dared to hope for a place in the flexible program that focuses on family needs and funds services. With a little persistence and a lot of luck, Moore's sons, ages 8 and 10, received the waivers. "There is a lot of personal sacrifice to get the services you need," recalls the education coordinator at the Atlanta Alliance on Developmental Disabilities. "It can be emotionally draining, frustrating, and takes a lot of time." While persistent and knowledge paid off for the Moores, Charlene Brown of Augusta wasn't as lucky. Like many individuals with disabilities, Brown was physically abused in childhood and adulthood, which ultimately led her to admit herself to a hospital for treatment of posttraumatic stress and severe mental depression. When she was denied the services of a sign-language interpreter, which prohibited effective treatment, Brown felt frustrated and victimized again. "I had to learn to be my own savior because no one [there] had the ability to help deaf people," explains Brown. "They were always trying to heal me like a hearing person." Brown and the Moores are among the 180,000 Georgians who annually access a myriad of publicly funded services through the Department of Human Resources' Division of Mental Health, Developmental Disabilities and Addictive Diseases, or MHDDAD. Their diverse experiences illustrate a system in flux, one that disability advocates say provides care based on what is available, not necessarily what an individual needs. It is also an emerging one that is struggling to respond to an outspoken cry for choice and flexibility. The recent resignation of Department of Human Resources Commissioner Jim Martin underscores the chaos in Georgia's human services system. Martin was the fourth commissioner in less than five years. With such a turnover in leadership, even a well-oiled system would be off track. But the problems of service delivery are just one of many for the beleaguered DHR, and repeated efforts to fix it keep getting sidetracked by budget crises and a revolving door of leadership. Rita, Nicholas and Hayden Moore In 2003, MHDDAD will spend $847 million - including $161 million from federally funded Medicaid - to serve Georgians with critical and chronic needs ranging from long-term institutional care to supported employment. Georgia's seven regional planning boards of appointed citizens advise a network of regional offices that are accountable to DHR. With input from the regional boards, regional offices prioritize community needs and issue contracts to assure that Georgians have access to physical and mental-health treatment, vocational assistance, family support, and a host of therapeutic and personal-care services. State health departments provided those services until 1993, when control was transferred to the regional network of services. Since that time, DHR, service providers, advocates and consumers have struggled to create a system that effectively cares for Georgia's most vulnerable citizens. A system that is accessible and comprehensible, and embodies the goal of "best practices." "Best practice provides services to the consumer based on their needs vs. the old system based on services the provider offers," explains Jim Martin. "Best practice means replicating programs proven to be consumer-friendly, inclusive, responsive, effective and cost-efficient." Service Eligibility Many families feel stuck on a treadmill, shuttled from agency to agency in what some call "the referral circle" as their name creeps slowly up the eligibility ladder on a waiting list. "There is no mechanism for families to know how the system works," says Whitney Fuchs, executive director of Georgia Community Support & Solutions, a nonprofit provider of respite, supports and vocational services. Fuchs and others stress the need for a single point of accountability, so that any time a family is referred for services or requests assistance, someone is responsible for following through on the request. Moore was diligent - calling the Fulton County Regional Office repeatedly and filling out reams of paperwork. But she doesn't single-handedly attribute diligence to her success. "I actually think I was at the right place at the right time, because they happened to have a couple of slots," she says. "The utilization manager was extremely helpful in explaining how the process worked." According to DHR, the single point of entry model begins with the first call to a regional office. A developmental disabilities specialist will discuss the circumstances with the family, describe available services, and instruct them to contact the region's intake and evaluation agency. There, initial assessment is performed and written notice is sent to explain the services for which the individual might qualify. If services are not available, the indi- continued on page 12 Fall 2003 11 continued from previous page vidual is placed on the long- or shortterm planning list and assigned a support coordinator. The coordinator is responsible for monitoring the situation and arranging services as they become available. No concrete criteria exist to prioritize the waiting lists for services. Before services actually begin, a comprehensive evaluation to authenticate eligibility for a Medicaid waiver is conducted. A Medicaid waiver is the major funding source for services. It is not a guarantee that an individual will get everything they need at once. Rather, it is entree into the system where appropriate. Soon after the Moores were told about the natural support waivers, their regional office scheduled both the boys for psychological and physiological evaluations in one afternoon. Then a social worker sat with Moore to see what the family needed. After a few months, the waivers were approved. The support coordinator assigned to the family has worked with Moore to choose private service providers and to make sure those providers are paid. Though more than 4,000 Georgians await services, experts estimate that the waiting lists in Georgia are unrealistically low. National population studies suggest that many more individuals with disabilities have simply not yet entered "the system" of services. Choosing Services Typically, once someone on the waiting list qualifies for services, they are given a list of approved providers to contact for arranging services. It is up to the family to interview providers and determine the best fit. The provider is responsible for making sure the family has the allocated amount of services. If an individual qualifies for day habilitation, they might be offered three programs. One family might choose the one closest or with the most convenient transportation program, another might choose the one that has the best vocational training. For many Georgians served by MHDDAD, especially those living in sparsely populated areas, a scarceness of choices reflects a system where service 12 Making A DIFFERENCE standards vary greatly. Often there is only one provider available. "We need real choices of providers exhibiting best practices in all areas of the state," explains Dave Blanchard, policy director at Atlanta Alliance on Developmental Disabilities. CSBs: Safety Net? In 1993, the local health departments became quasi-private agencies known as community service boards (CSBs), which are governed by independ- Jim Martin ent boards of directors. Since then, private and not-for-profit service providers have increased, competing with CSBs and widening the field of choice and quality of care options for consumers, particularly in disability services. In 2002, CSBs provided services to 14,123 mental health patients and 1,671 people with disabilities. Whereas most providers focus on just one or two areas, such as running a residential home or physical therapy, CSBs provide the most comprehensive array of services. "There is nothing that CSBs provide that private providers couldn't," explains Derril Gay, executive director of the DeKalb CSB. "They provide a fuller range of services than any private provider could put together because they have built up over time." Charged with providing services to every citizen in their region who is not able to pay for them, often in hard-to- staff rural areas, CSBs find themselves juxtaposed between operating like a private enterprise and not turning away consumers. Not surprisingly, numerous CSBs have come under fire for a variety of wrongdoings, client complaints and mismanagement. Recently, in response to complaints and a criminal investigation at one CSB, James Sehorn, Georgia Inspector General, recommended that DHR tighten oversight of CSBs. However, when some CSBs tried to cut services to balance budgets, DHR stopped them, says Gay. And when recent funding cuts prompted DeKalb CSB to slate two residential homes for closing, advocates demanded legislative intervention to keep the funding. "When you've seen one CSB, you haven't seen them all," counters Gay. "We happen to run a very good CSB and work very hard to be ethical. No one wants to think the state would let a public-safety agency go out of business." Private providers have an added advantage, he contends. They can pick and choose their clients, whereas CSBs must serve all clients, regardless of their ability to pay. "But, providing services without a funding source is a recipe for disaster," he adds. When a $6.5 million deficit was revealed at Gateway CSB in Savannah, DHR took over. It provided emergency funds to meet payroll and continue services. Also, the National Council for Community Behavioral Healthcare was appointed to assess and run the agency that serves 27,000 clients in eight counties. Only a few years earlier, Gateway had merged with another failing CSB. While Interim Director Wayne Lindstrom accused Gateway of operating "in chaos" with "no accountability," Gateway proponents responded with claims of gross under funding by the state and inadequate oversight by DHR. Others, including advocates, the NCCBH and the Savannah Morning News, blamed a system devoid of business sense or firm leadership. Responding to the controversy, the Governor's Council on Developmental Disabilities called on DHR, MHDDAD, Continued on next page consumers, advocates and the CSB association to "re-examine the legal and financial relationship of community service boards to the state ... and bring some resolution to their ambiguous status for the good of the regional system as a whole." The statement continued, "...No provider should be able to go into so much debt without involvement by the funding entity; nor should consumers be placed in such jeopardy through a threat to abruptly cease services." Says Fuchs about faltering CSB mergers, "Taking over a failing organization is a unique skill set [because] you need an expert in turnarounds who can operate as a business that cares about people, but is a business." The Gateway takeover and stopgap funding in DeKalb illustrate the CSB advantage in a system designed to elevate service quality and provide variety by creating a competitive market. Jim Martin, who introduced changes to increase accountability and consumer choice, wants to see CSBs run like businesses. "New contracts with CSBs are [no longer] based on them being a comprehensive provider," explains Martin. "We want all contractors to know that the best quality, lowest-priced provider will be chosen." Still, private providers, which are typically nonprofit agencies, are hesitant to enter an operating environment troubled by a cumbersome bureaucracy and a shortage of workers. "Employees are the heart of the system to support people with disabilities," acknowledges Charles Hopkins, special assistant to the director of MHDDAD. Hopkins considers investing in work force development, training and retention to be an important part of the state's responsibility to providers. Fixing the System "The state's goal is to maintain services to the individual, but what is the long-term plan, the root cause of the problem?" asks Blanchard. Answers to that question vary, depending on who is asked. Bettertrained employees, higher salaries to increase retention, conflict-free service system is failing. provision and provider choice are all DHR remains focused on improving affected by the number one obstacle - a human services despite dwindling lack of resources. As MHDDAD struggles resources. Change is slow but it is under to reinvent itself as a more consumer- way. "To work toward [best practices], driven agency, it remains victim of a dwin- contracts now have a consumer-satisfac- dling state budget and funding that was tion component," explains Martin. "We slashed another $53 million in August. are trying to make this a consumer-driv- Following recommendations from en program." the MHDDAD community, Jim Martin "As long as the economy is so bad, split the division into two departments for more "We don't have enough resources, but we have to focused delivery. Also, the division recently adopted a policy of "con- do the best job possible flict-free case management" and separated with what we have to meet the needs of as service-delivery providers from newly established, "support coordi- many people as possible." nators," that are charged with the - Jim Martin, DHR Commissioner intake, assess- ment, service planning and coordination everyone is going to have to live within of each individual's care program. the revenues," counters Gay. "If cuts are This change shook up numerous much deeper, we'll have to do what agencies that provided both. New DHR did: make judgments about what waivers were developed to improve fam- programs to eliminate. You can't pro- ily support, but funding for the program vide the service if the [funding] doesn't falls far short of needs. support the program." "We don't have enough resources, but As DHR continues to seek the we have to do the best job possible with roadmap to successful service delivery, what we have to meet the needs of as systemic inertia and funding shortages many people as possible," says Martin. block the road to success. Georgians "It will be a long time before we have ade- with disabilities and the families and quate resources, so we must be more professionals who care for them contin- careful with what we have...and we have ue to advocate for a day when the road to be better at leveraging [federal] paved with good intentions becomes a Medicaid funding." comprehensive highway leading to flexi- Today, Brown - like disability advo- ble, safe, accountable services in every cates across Georgia - is working to community in the state. change the system that failed her. She For families like the Moores, that works part time as an interpreter for day arrived when their boys received Walton Options, a center for independ- natural supports waivers. ent living in Augusta. "The waiver has helped my family "Most consumers I work with come immensely. It has really made a differ- to me because I have been in the same ence for my sons," says Moore. "They situation," she says. "The funding system are really benefiting from services they is prejudiced against consumer choice." would otherwise go without. It's been a She and colleagues assert that until lifesaver for us. I can't tell you how services are consumer-directed, the fortunate I feel to have this waiver." Fall 2003 13 Self-Determination By Yao Seidu A NEW FRONTIER IN GEORGIA S elf-determination - the most important concept to emerge in the Disability Movement - is today a civil rights issue at the forefront of people's lives. In concept selfdetermination dates back centuries, and for people with disabilities it means, "I want choices and to be consulted on decisions affecting my life." Leornard Roscoe, Renee and Nigel This "new best thing in disability service delivery" actually took hold at the first international conference of persons with disabilities in 1968. Bengt Nirje of Sweden described the event in his now famous essay "The Rights to Self-Determination," which serves as a basis for what is today the most fair and honest way of providing services to people with disabilities. In 1997, at a conference at the University of Georgia (UGA) in Athens (Who's the Boss: A Think Tank on the Future of SelfDetermination in Georgia), the Institute of Human Development and Disability (IHDD) matched national experts in self-determination with local self-advocates, bringing this concept of modern service delivery to the Peach State. A year later, a Self-Determination Team was developed to travel statewide teaching the benefits of real choice, systems change, and controlling one's life through the principles of freedom, authority, support and responsibility. Self-determination is when individuals are enabled to direct their lives, make their own choices, decisions and live with the consequences. It is not just choice, but every person's human right to decide their own fate. For those with disabilities, it also means selfdirected care: having the right and to determine how to allocate the money for their essential services and supports. According to the Robert Wood Johnson Foundation, it is having the authority to design services according to individual needs and budgets, as well as hiring and firing support staff based on choice, performance and individual preferences. "Self-determination is the doing, while advocacy is the talking, the speaking about what you want," says IHDD Self-Determination Team Advisor Vici Decker. "Selfdetermination is the actual living and demonstrating of what you want and having the capacity to make decisions of your own choice." Nationally, self-determination practices have been credited with improving quality of care, increasing consumer control and satisfaction, decreasing employee turnover, and in some cases reducing public expenditures. "The important policy shift here is following the money, being able to control how your support 14 Making A DIFFERENCE Self Determination A NEW FRONTIER IN GEORGIA dollars are being spent," says Beth tions, is one of several members of the Spinning, program director, Governor's IHDD's Self-Determination Team. Like Council on Developmental Disabilities many before him, he was raised in a vac- (GCDD). "It is the shifting of authority uum devoid of self-determination. He was and control over money from administra- not allowed to set goals, make decisions, tors and program technicians, to people evaluate his options, solve his own prob- with disabilities -- consumers of service. lems, speak for himself, learn about the You are not in complete control, until supports available to him or evaluate the you control your own resources." accord- potential outcomes. In understanding ing to the GCDD staff member working self-determination yesterday and today, on self-determination , the state is now in his life's story is unique but not unusual. prime position with a primary vehicle for Roscoe, born with osteogenesis imper- shifting more control to consumers and fecta (brittle bone disease), a rare genet- altering home- and community-based ic condition (less than 50,000 cases services so that people with disabilities nationally) that causes bones to break and their families actually control the easily -- from little or no apparent cause - financial resources provided to them by - was never given much choice in life. the state through the Medicaid program. The "Grady (hospital) Baby" was "With a major paradigm shift of treated immediately upon delivery at one adopting a new self-determination of the nation's best neonatal care unit, model, people with disabilities can con- which was credited with saving his life. He trol funding to purchase supports: hiring was transferred from hospitals to state and firing who institutions with they want," Spinning said. "...You are not in complete family members given little choice of "Consumers will also have authority and control, until you control treatment options or locations. your own resources." "My disability choice to purchase supports -Beth Spinning caused me to be separated from fam- and aid out- ily," says Roscoe. "It side the traditional realm of services like wasn't my choice, I'm not sure if it was hiring a family member, neighbor or theirs either." friend to provide homemaking or trans- Often wrapped in casts from head- portation services." to-toe, Roscoe started elementary school The self-determination concept isn't late but the quick-witted, gifted orator -- new to Georgian, the birthplace of the known as one of the nation's most effec- landmark U.S. Supreme Court Olmstead tive self-determination advocates -- even- decision, which mandates that individu- tually graduated from a public high als with disabilities have the right to leave school nearly on time. institutions and direct the funds being Today, Roscoe's survival is a function spent on their care to supports in the of how well he protects and shelters his community. With Olmstead implementa- delicate 3'11" frame from the constant tion leading the way, Georgia's service perils of bone breakage. His high-powered delivery system is on a gradual track to wheelchair is more than an aid for mobili- providing self-directed care for more of ty, it also serves as important armor and its citizens with disabilities. essential protection against continuous The majority of people today strug- threats to harm his delicate and fragile gle with life's daily decisions, but it is skeleton which shield internal organs. people with disabilities who are consid- "A lot of people think of me as being ered less capable or worthy of making very special, but I don't see myself that decisions of their own and living with the way," says the aspiring disc jockey, who consequences. Seldom, are they allowed spins CDs and vinyl LPs at social gather- the freedom of choice to independently ings with hopes of some day working determine if they will succeed or fail. professionally in the field. "I want the Leonard Roscoe, 34, who spent the same things that everyone else does." first 26 years of his life in state institu- That includes work, home ownership, a continued on page 16 New Self-Determination Legislation in Georgia would include An impetus to change all levels of state government where alternatives to institutional care for people with disabilities becomes a priority. An application for a new state Independence-Plus Medicaid Waiver to the federal government that modifies the existing service delivery system to be more responsive to the ever changing needs of Georgians with disabilities. The establishment of MicroEnterprise Programs that allow Georgians with disabilities to become business owners with flexible income to fund some of their own supports and services. This new money earned will offset state funded supports. The creation of Micro-Board, mini-corporation whose members are friends, family members and the Georgian with disabilities. This mini-corporation's sole purpose and responsibility is to provide services and supports to the single individual with disabilities. Fall 2003 15 continued from page 15 Self Determination A NEW FRONTIER IN GEORGIA family of his own and close family connec- says GCDD Executive Director Eric tions with his parents and siblings (for the Jacobson. "It is a process, perhaps a new great majority of his life, Roscoe harbored way of thinking, it's a new way of doing feelings of abandonment and isolation from things in our state. It's `best practice' in dis- his natural family). ability that we must implement, to allow Being a parent to children is one of individuals with disabilities to be able to many life-long goals of Roscoe, whose live-in design their own services and supports attendant, Renee, is a partner in the recent according to what they need, that what has adoption of Nigel, an elementary school- typically been `available' to them." aged son. "People should be able to select, hire and Gail Bottoms, another nationally known fire support service providers as determined self-determination advocate and member of by their own criteria," Jacobson adds. Most Georgia's Self-Determination Team --lives importantly, "Georgians with disabilities quietly with a family of her own -- in Griffin, a should be able to purchase "cafeteria-style" small bedroom community south of Atlanta. services and supports outside of the tradi- She, with her gentle quiet spirit and tional service delivery system if they chose. down-to-earth mannerisms as a member of We believe its their right." the "Governor's Council" (GCDD) and the Dr. Zolinda Stoneman, IHDD director at state's self-determination team. UGA agrees. The poet is also a well-known and effec- "To ultimately realize the strength of an tive community activist who has distin- individual, we have to continuously expand guished her- the choices and self as a "They should be able to select, opportunities for plain-talk- persons with dis- ing, straight- hire and fire a service provide as abilities to shooting "neighbor" determined by their own criteria." become full partners in their com- who believes -- Eric Jacobson, GCDD Executive Director munities," the strongly that university profes- people with disabilities make the best deci- sor says. "By doing so, our communities sions concerning their own lives. become stronger, more diverse, more inclu- Recently in a public forum when Dept. sive and more productive. Everyone is con- of Human Resources Commissioner Jim tributing their talents and abilities and as a Martin announced the formation of the new result our communities become a better Office of Developmental Disabilities and place to live, work, learn and play for us all." how the state would fund future disability For true self-determination to happen, a new supports and services, Bottoms approached system has to be constructed and put in place. a microphone and said in very direct Beth Spinning, GCDD program director, approach, "Mr. Commissioner, can you outlines a working model that includes the nec- break it down and tell us little people in your essary tools for successful self-determination. own words, what impact this will have on "Self-determination doesn't become a people with disabilities?" reality in Georgia without individualized The former four-year president of People budgets. It takes a redirection of service dol- First of Georgia, married for 25 years with a lars controlled by individuals with disabili- grandchild, has earned the respect of neigh- ties and their freely-chosen allies," she says. bors, colleagues, high-ranking administra- "An individual budget is created to support tors and policy-makers due to her matchless one person and one person only." ability of sharing the importance of advocacy Spinning says independent support and information. coordination is the second leg of the stool in "Somebody helped me to get where I am any systems change initiative. today," says Bottoms. "It's natural for me to "A person with a disability needs to have help others, speak-out for them, and try to someone to help them with `plan and make a difference in the lives and others who resource development'. It's a detailed don't have a recognized voice." process that has to be approved before state Self-Determination needs to be policy, and federal dollars can be allocated," she Independence Plus Wavier & Money Follows the Individual Coming to Georgia Next Year? Part of President's New Freedom Initiative A new self-determination program, "Money Follows the Individual," is an initiative and federal change-in-policy introduced by of President George Bush (Feb.'01) that allows the federal government to pay 100 percent of the cost of moving an individual with disabilities out of an institution and into a community setting. Part of his $1.75 billion "New Freedom Initiative," Bush hopes to "tear down the barriers to community living for people with disabilities," he says as well as motivate state and federal governments to work together to increase choice. Typically, the federal government reimburses Georgia about 60-percent of its cost in moving those with disabilities out of institutions and into communities. A new major focal point in the president's Medicaid reform plan is the creation of "The Independence Plus" Medicaid waiver. This self-determination mechanism streamlines the approval process for creating special consideration for families that allow the exercise of great choice, control and responsibility in choosing supports and services. The use of Tools of Self-Determination -- with individualized budgets and a neutral fiscal agent -- is an important component of this new Medicaid program. For additional information visit: http://www.cms.hhs.gov/newfreedom http://www.cms.hhs.gov/independenceplus 16 Making A DIFFERENCE Self Determination A NEW FRONTIER IN GEORGIA Georgia Today on Self-Determination Grassroots advocacy, Georgia's #1 strength in promoting systems change, is the impetus that will make self-determination -- real choice for people with disabilities a reality in our state. Activists working on parallel tracks, in and outside of state government, are optimistic that implementing self-determination policy will become a reality in the next few years. In last year's legislative session, an Independence Plus Initiative (SB 170 & HB 715) was introduced in both houses that would effectively bring about systems change in the delivery of services for Georgians with disabilities. This new legislative initiative would change public policy and allow for greater authority and choice for the consumer of disability programs, services and supports. Additionally, at the state level, administrators are being encouraged by advocates to implement administrative changes internally -- within the Departments of Human Resources and Community Health. If program managers, at highest level approve, self-determination initiatives introduced in the house and senate will not become unnecessary. Gov. Sonny Perdue -- working with the Governor's Council on Developmental Disabilities and state-level disability administrators -- is crafting a new pilot program that demonstrates self-determination tools, techniques and procedures that could be put in place once administrators or the legislature approve self-determination policy and standards. says. Additionally, she cites the need for a systems change will further be enhanced fiscal intermediary -- a third component of by the GCDD's priority of teaching stu- the individualized self-determination infra- dent-advocates in high school, through structure -- to provide order in check writ- their Project of National Significance, as ing and bill-paying, which ensures that per- well as hosting a national "Immersion sonnel and personal costs are budgeted Learning about Self-Determination" in and monitored. Atlanta this spring. Additionally, GCDD David Mapp, who also has osteogenesis will collaborate with community members imperfecta, works as a part-time recep- to host a number of information/advocacy tionist at disAbility Link, a Center of opportunities for lawmakers, policy-makers, Independent Living (CIL) that promotes key executives and the media. independence and lifestyle opportunities Speaking optimistically, Jacobson, says for people with "we have to disabilities. "My life is "...I've got to focus on my life believe that allowing now, I need and not be consumed with G e o r g i a n s help now, this with disabilities the system needs to hurdles and barriers to determine change now," the self-advo- placed before me to receive for themselves how govern- cate says. "I can services." not wait much ment resources - David Mapp can best help longer to be them, is a self-determined. I've got to focus on my concept, a service delivery system whose life and not be consumed with the hurdles time has come." and barriers placed before me to receive Roscoe is a bit less confident than services." Jacobson, Gov. Perdue's developmental Plans are under way to bring about disability analyst. significant systems change in the service "Georgia hasn't been a leader in any- delivery system for Georgians with disabil- thing relative to disability," says Roscoe. ities. Mapp, Roscoe, Bottoms and others "We are still waiting for Olmstead to be have been waiting patiently. implemented, we are 50th in the nation "Georgia is on the brink of making sig- relative to fiscal effort to support commu- nificant advances in self-determination," nity services for people with disabilities Jacobson says. "We are ahead of some and we still need to get people out of hos- states already by having a successful self- pitals and nursing homes who can live in determination team that has been active communities." for years talking with family members, Roscoe, who once considered relocat- service providers, policy-makers and elect- ing to another state because others pro- ed officials around the state." vide more services to people with disabili- Further evidence of Georgia's move ties, says "okay, I can begin to understand toward self-determination became evident why someone would be optimistic about with a bill introduced in the last legislative self-determination being implemented in session which resulted in the formulation Georgia. Yes, it is an opportunity for us of a self-determination study committee to here to be a national leader. Perhaps, Gov. examine the policies. Jacobson is hopeful Perdue is the right guy, in the right place at the bill will pass both Houses in the next the right time to really make a difference legislative session. for us who with disabilities every moment "Couple that with self-advocates in our live. Life, death and quality of life working with our CILs and we begin to issues all depend on what we do tomorrow approach critical mass, where systems concerning self-determination." change and improved service delivery is inevitable," Jacobson says. Dottie Adams and Beth Spinning GCDD, which is state operated and of GCDD contributed to this article. federally funded, believes the impetus for Fall 2003 17 TIPS for Families and Professionals Promoting Self-Determination in Youth with Disabilities Promote Choice Making Encourage Exploration of Possibilities Promote Reasonable Risk Taking Encourage Problem Solving Promote Self-Advocacy Facilitate Development of Self-Esteem Develop Goal Setting and Planning Help Youth Understand Their Disabilities Taken from www.ncset.org/publications Self-Determination: Supporting Successful Transition (This brief outlines research on self-determination suggesting that youth with disabilities who actively direct their own lives are more likely to successfully transition into adult life.) Children celebrate at the finish line of the 2003 Lekotek race. Straight Talk Creative Drive of Janis Shapiro Inspires Others By Gail Bottoms and Lisa Sassaman J anis Shapiro describes herself as a composer who loves to write; as a poet who creates mental poems while in bed at night, and puts them on paper the next morning. Janis' life has been one of challenges. Because she has cerebral palsy, learning to speak clearly was difficult. She received no formal education, but her mother, a teacher provided the basic necessities for learning. Through her own drive and ambition, Janis taught herself typing, and began writing in her teens. She was 37 years old when she started speech therapy and 39 before she could say her own name. While her mother was overprotective, it was a cousin by the name of Bernice Snooks, who instilled confidence in Janis and her abilities. When her mother became ill and paralyzed, Bernice encouraged Janis to take charge of how she would care for her mother. Janis credits her strong trust in God and her personal will power in giving her the strength she needs to live her life in a selfdetermined way. Her favorite Bible verse is Philippians 4:13, I can do all things in Christ who strengthens me. She also thrives because she knows that other people have confidence in her and see her as an inspiration. Janis' advice to parents of children with disabilities is to protect their child, but let them prove what they can do. Parents should be a safety net for their child when they try to see what they can achieve. People First, a self-advocacy group, has provided Janis with a forum to speak out about self-determination. She has made presentations throughout Georgia, Tennessee, North Carolina, Louisiana and Alabama. She has received encouragement from other People First members to speak up. She says that she used to be self-conscious and would picture everyone looking at her. Janis has learned to focus on talking to one person in the audience, which helps her not be intimidated in front of large groups. She tells people with disabilities who may not have had an opportunity to speak up about what is important to them is, "Get up off of your seat and try. You don't know what you can do until you make an effort." Janis is a shining example of the power and spirit in each one of us. In 1982 she married David Shapiro, and in 1986 she completed her education at the Adult Education Center in Griffin. Since 1983, she has served at her church on the Christian Women's Center board of directors, and received the "Hero of the Town" award. Janis' has a book of poetry that is in its second printing. She is a truly remarkable woman and an inspiration to us all. 18 Making A DIFFERENCE O S - UR PONSORS Help us to improve our editorial content as well as print additional copies of this magazine. We appreciate their support and yours. 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 Beth English, Director 1906 Palmyra Road Albany, Ga 31701 (229) 439-7061 GOVERNOR'S COUNCIL ON DEVELOPMENTAL DISABILITIES Over 117,000 Georgians With Developmental Disabilities Want... s Real Jobs s Real Homes s Real Learning Experiences 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 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 ARC Cobb (770) 427-8401 www.arccobb.org DeKalb Developmental Disabilities Council (404) 508-7796 Fax (404)508-6443 Fall 2003 19 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 areas, please visit - www.disabilityresources.org/GEORGIA.html Preferred State Providers The state agencies listed below are recognized as those who provide "best practice" services and information to people in Georgia. Babies Can't Wait Children with Special Needs Div. of Public Health, Dept. of Human Resources (404) 657-2726, (888) 651-8224 www.ph.dhr.state.ga.us/programs/bcw Georgia Advocacy Office (404) 885-1234, (800) 537-2329 www.thegao.org Georgia ARC Network (404) 634-5512 www.arcga.org Governor's Council on Developmental Disabilities (GCDD) (404) 657-2126 or (888) 275-4233 www.ga-ddcouncil.org Parent to Parent of Georgia Inc. (770) 451-5484 or (800) 229-2038 www.parenttoparentofga.org Statewide Independent Living Councils of GA (SILC) (770) 270-6860 or (888) 288-9780 www.silcga.org University Centers for Excellence in Developmental Disabilities Institute on Human Development and Disability (706) 542-3457 www.uap.uga.edu SELF DETERMINATION ADAPT (303) 733-9324 www.adapt.org Advocating Change Together (800) 641-0059, Fax: 651-641-4053 www.selfadvocacy.com Center for Self Determination (734) 213-5220, Fax: (734) 213-5229 www.self-determination.com Employment For All (228)-497-6999, Fax: (228) 497-6966 www.employmentforall.org GCDD Contact: Beth Spinning www.gcdd.org Inclusion Research Institute (202) 546-4464 x250, Fax: (202) 546-4465 www.inclusionresearch.org 20 Making A DIFFERENCE National Institute on Disability and Rehabilitation Research (202) 205-8134 www.ed.gov/offices/OSERS/NIDRR National Center on Secondary Education and Transition (612) 624-2097, Fax: (612) 624-9344 www.ncset.org Self-Advocate Leadership Network (503) 885-1436, Fax: (503) 885-1536 www.hsri.org/leaders Self-Advocates Becoming Empowered http://www.sabeusa.org Self-directed Support Corporation (SDSC) Information on Microboards and Self-Directed Support Corporations www.self-determined.org Speaking for Ourselves (610) 825-4592, Fax: (610) 825-4595 www.speaking.org/self_determination.htm MEDICAID Benefits Planning Assistance & Outreach - Georgia A service that provides comprehensive benefits counseling to the recipient or beneficiary of SSI (404) 350-7589 or (866) 772-2726 www.bpaoga.com Centers for Medicare & Medicaid Services (CMS) A Federal agency within the U.S. Department of Health and Human Services. www.cms.gov Consumer Insurance Advocate (404) 463-1010, Fax: (404) 463-1067 www.insuranceadvocate.org Families USA The Voice for Health Care Consumers (202) 628-3030, Fax: (202) 347-2417 www.familiesusa.org Georgia Dept. of Community Health www.communityhealth.state.ga.us Georgia Cares Health Insurance Counseling, Assistance and Referral for the elderly (800) 669-8387, Fas: (404) 657-5285 www.agingatlanta.com Georgia's Medicaid Program (404) 656-4507 www.dch.state.ga.us Resources Georgia Medicare www.gamedicare.com Federal Medicaid Program to support Self-Determination (877) 267-2323 www.cms.gov/newfeedom Georgia Insurance and Safety Fire Commissioner's Office (404) 656-2070 or (800) 656-2298 www.inscomm.state.ga.us Social Security Administration (800) 772-1213 www.ssa.gov/pubs/10029.html Tricare The US Dept. of Defense Health Plan (800) 444-5445 www.tricare.osd.mil SERVICE DELIVERY SYSTEM Albany ARC: See Sponsor page 19 Atlanta Alliance for Developmental Disabilities (AADD) Partners in Policymaking (404) 881-9777 www.aadd.org disABILITYLINK (404) 687-8890 or (800) 239-2507 www.disabilitylink.org Division of Mental Health, Developmental Disabilities & Addictive Diseases (MHDDAD) Regional offices oversee the network of state-supported MHDDAD community and state hospital services in the region. (404) 657-5737, (404) 657-2272 Fax: (404) 657-2256 www2.state.ga.us/departments.html Georgia Advocacy Office See Preferred Providers Georgia ARC Network See Preferred Providers Easter Seals of Southern GA See Sponsor page 19 Family Voices (678) 445-4664 www.familyvoices.org Continued on page 21 Calendar OCTOBER National Disability Employment Awareness Month National Down Syndrome Awareness Month 8 10 iCan! Disability Summit Holiday Inn Charleston , Charleston, SC Admission includes conference, accessible ground transportation, meals and hotel Contact: (877) ASK-ICAN www.ican.com 9 10 Quarterly Meeting Governor's Council on Developmental Disabilities Augusta (404) 657-2127 www.gcdd.org 9 11 The How's & Why's of Establishing Valued Social Roles for Children & Adults in our Society Georgia Advocacy Office (800) 537-2329 www.gao.org or donna@thegao.org 15 Disability Mentoring Day (DMD): Career Development for the 21st Century American Association of People with Disabilities & U.S. Dept of Labor Office of Disability Employment Policy Contact: Ollie Cantos (800) 840-8844 www2.dol.gov/dol/odep 17 - 19 Women with Disabilities & Allies Forum: Linking Arms for Equality & Justice for All Am. Assn. of People with Disabilities (AAPD) & Nat'l Org. for Women (NOW) Bethesda, Maryland (800) 840-8844 www.aapd-dc.org 18 Annual Buddy Walk Down Syndrome Assn. Of Atlanta Contact: Sue Joe, (404) 320-3233 www.down-syndrome-atlanta.org 19 - 21 2003 Family Connection Biennial Conference Jekyll Island Convention Center, Jekyll Island, GA Contact: Laurie Searle, (404) 527-7394, ext. 104, or e-mail laurie@gafcp.org. www.georgiafamilyconnection.org 25 The Learning Disability Conference: The Decade of the Brain Conference on learning disability and ADD/ADHD Learning Disabilities Association of Georgia Georgia State University Student Center, Atlanta, GA (404) 303-7774 www.ldag.org/events.htm 25 28 Home Care in the Heartland Home & Community Based Services (HCBS) Waiver Conference National Association of State Units on Aging Milwaukee, WI Contact: Virginia, (202) 898-2578 www.nasua.org 29 1 Through the Years: From Science to Practice 15th Annual CHADD Conference on AD/HD Adam's Mark Hotel, Denver Colorado (800) 233-4050 www.chadd.org 30 7th Annual Inclusion Conference: Beyond Access Sponsored by RISE Project, UT Boling Center for D.D., The Mid-South Access Center, The ARC of TN Contact: Paul Ayers, (901) 678-4932 www.utmem.edu/bcdd/beyond_access_03.html NOVEMBER 11 14 Vision 20/20: 49th Annual SEAAMR meeting Chattanoogan Hotel, Chattanooga, TN Contact: Sara Clifford, (770) 277-4477 http://seaamr.org/ 14 16 "Knocked Down but Not Knocked Out!" Conference for youth with spinal cord injuries Shepherd Center Marcus Community Bridge Program & the Institute on Human Development and Disability Roosevelt Warm Springs Institute Contact: IHDD at (706) 583-0544 15 Siblings need support too! Lekotek of GA Contact: (404) 633-3430 www.lekotekga.org 20 21 National Health Forum: Improving the Quality of Healthcare for People with Developmental Disabilities Sheraton Atlanta Hotel Keynote speakers Bernie Marcus, Dr. David Satcher, Dr. Vince Campbell Contact: Janice Nodvin (770) 956-8511, ext. 207 www.mayinstitute.org www.marcus.org DECEMBER 10 13 Possibilities: 2003 TASH Conference Chicago Hilton, Chicago, IL www.tash.org SAVE THE DATE IN 2004 February 26, 2004 Disability Day at the Capitol 2004 www.gcdd.org February 28 29, 2004 Regional Conference on Down Syndrome & Other Developmental Disabilities Marriott Century Center www.down-syndrome-atlanta.org March 17-20, 2004 Better All Together: Inclusion Works! Inclusive Education Conference Peachtree Wyndham, Peachtree City www.gcdd.org April 25-28 National Learning Immersion About Self-Determination Conference www.self-determination.com Resources Continued from page 20 Georgia ADA Exchange (770) 451-2340 or (800) 949-4232 www.gaada.info Parent to Parent of Georgia See Preferred Providers Statewide Independent Living Council of Georgia, Inc. (SILC) See Preferred Providers MEDICAL National Center on Birth Defects, Developmental Disabilities and Health (770) 488-7150 www.cdc.gov/ncbddd Osteogenesis imperfecta (800) 981-2663, Fax: (301) 947-0456 www.oif.org Fall 2003 21 Paid Advertisement Paid Advertisement Volume 4, Issue 2 Fall 2003 Making A DIFFERENCE The quarterly magazine of the Governor's Council on Developmental Disabilities 10 Georgians With Disabilities Trek to D.C. Georgia advocates go to the nation's capitol to urge lawmakers to reform Medicaid. 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 Pat Puckett Executive Director, Statewide Independent Living Councils of Georgia SELF-DETERMINATION 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